Vegas Nerve Stimulator

[dreambeliever128]

Have any of you heard of the VNS for depression?

I am in the process of trying to get it. My Dr. and a lady that works for the company is going to start fighting to get it ok'd by my insurance. I know the fight will be long. I'm looking at most likely a year just for the fight to get it. Then the implant is put in and it takes 8 weeks to get better from the surgery and then it has to be turned on by a wand and then it takes up to 6 months to start seeing any difference, maybe longer.

I just wanted to know if anyone has had this put in or knows of anyone that has had it done.

Thanks,
Ada

[jingle]

Ada - The VNS is widely used for epilepsy and you could perhaps get lots of answers about it in that Forum.
Best wishes :)

[Julie]

Here is one website I found with info for you.

http://www.vnstherapy.com/

I just did a search with the perameters VNS + depression and found lots of information. I hope this helps.

[DiMarie]

Ada I met a person during a NAMI convention recently that shared his experiance. I did not attend his presentation, but did hear him speak at the lucnh table, and have somewere in my notes a pamphlet...
I will look for it.

Ada, do you think if you had an SCS nerve stimulator for Tos Pain implanted it may have cross over benefits? I know the implant is not in the same place, but the vegal nerve stim is implanted near the armpit, up into the front of the chest where the brachial nerve area is....I have concern about aggrivating the Tos symptoms.

Di

[dreambeliever128]

Thanks for the information. I have read some and will read the rest.

DiMarie, I never thought about it aggravating the TOS. I do know the chip is put up near the neck area where the TOS problems are. That will be an issue I will talk to when I see the surgeon that will put it in. My PCP has some concerns about me having more problems from it but he also promised me that if it was approved by the FDA we would go after it.

I'm also not sure when but I will end up having my left side TOS surgery eventually and that might be a good ideal before I get the VNS put in. They sent me a tape which I got yesterday plus a lot of info on it so I am going to watch the tape and see how they put it in and what it does.

I'm just so tired of this depression. I'm just trying to find a way to have a better quality of life. Now that I don't have Bill I do know that I need something to help me get to a point to where I can get out of this house. I have a friend who lost her husband 6 years ago and she is a mess. Her daughter doesn't want me in the shape her Mom is in so she thinks this is a good ideal.

Nothing has helped my depression at all. I can't take the meds and I won't let them do the ECT on me. They have wanted to do it and my PCP won't let them either so we both agree on that. I'm just desperate for answers.

I just thought there might be someone on here that has had it implanted for depression. I will go to the other board and read though. Thanks for all of the good info.
Ada

[OneMoreTime]

DreamBelieve, before you lie down on the wheeled wagon headed for surgery, DO investigate this procedure very closely. Don't limit your learning to the surgeon and the company website and salespersons ie, customer service representatives. Study up on it. A few have had the device removed for various reasons. Do you know about the side effects?? And read about the studies?

If you find a "support group", feel suspicious if the group is heavily moderated and only has positive glowing reports, as it might be owned (behind the scenes) by the company.

Have you TRULY tried all the possible antidepressants? There are DOZENS and very few people have actually tried all the ADs, just a handful. Which ones have you tried? What happens when you try them? Have you been tried on any of the TriCyclics? Different ADs are not just "different brands". They are not just like cans of green beans with different brand names. They are each distinctively different compounds that interact with your brain neurotransmitter in totally different ways.

80-90% of people who try ADs will eventually find relief, tho some may have to try more than three or will have to try a combination (like adding thryroid, etc) or trying a mood stabilizer. See McMan's website - http://www.mcmanweb.com/article-17.htm

What, exactly, happens - how does your body or mind respond to being on these meds? Do you go off them within the first month or do you give them at least 2 months to work? Or do you have a rapid response, within the first 3 days, that makes you want to stop them? What is that reaction like?

Have you been tried on a mood stabilizer like Lithium or Lamictal? What does your psychiatrist say about your major depressive disorder?

How does psychotherapy do for you? How many different therapists, how many types of therapies have you tried? Do you try them while you are on ADs?

How long have you had depression? Is it every day? Are you often suicidal? Does it keep you from being able to work? To interact positively or productively with your loved ones? Can you leave the house, shop, keep house and cook? Can you function? Do you have self-harming thoughts at times? Have you ever attempted suicide or planned a sucide (yet then didn't do anything)?

What are your depressive symptoms? Lots of anxieties, too? Do you have very little appetite or do you tend to gain weight, more and more -a huge appetite? Do you cry a lot? Do you have trouble getting to sleep or trouble staying asleep or wake up too early and then can't get back to sleep? Do you have a chance to nap during the day? Do you have a lot of stress in your life? Or did you have a lot of stress when you were a child?

What other medications do you take regularly? Or supplements?

My concern is that there is the strong profit-motivation behind this unproven device. Yes, there are patients who report it cured them -- but the cure may not last for long. And consider that placebos of the right color (red has found to be the best) can "cure" depression, too. Do find out a great deal more about all the possible complications and read the studies yourself. (at least the abstracts online).

These are things you should think about, write out, then present to your psychiatrist and ask him if seeing all these information makes him consider anything else? A psychiatrist, seeing you for generally short periods at spread appointments, rather than one hour a week, often has a very spotty notion of you, as an entire person.

I wish you the best in your exporation of DreamBeliever.
Theresa


PS:
I have no desire to have anyone live with depression for year after year. I was very overwhelmed and (I guess) depressed during high school, given that I flirted with suicide by car wreck, over and over, during at least a couple of years. I was depressed in junior high, too. But my "adult form" of depression didn't start until late in my 20's, when I had a great sense of the hopelessness and helplessness of my life, and my life, in all aspects but my children, was falling totally apart.

In that period, I spent an entire year of my life sleeping, sleeping, sleeping - day in, day out, before I was put on a tricyclic, desipramine - a medication I was on for the next 8 years. Actually, it has remained the best AD I've ever been on - and I have recently been considering giving it a trial run again. It is still a highly recommended tricyclic for bipolars. Gave me low blood pressure (bit woozy if I stood up too fast) for a while til I got used to it. Also a dry gummy mouth.

But during that year, I would get up in the morning, fix breakfast for the children, then go to sleep on the couch - they would wake me for lunch, then my husband's phone call before coming home would wake me to make supper. I MIGHT stay awake for a bit after supper, but then it was sleep again. Prior to that year, I had a 7 or so years at least, of near-constant anxiety --- "nerves". After getting on the AD, my "nerves" went away. Everytime I came off the AD, my "nerves" would come back with a vengeance -- until, after a number of years, they no longer did.

When I am depressed, I am never tearful, don't cry (can only really cry when I am doing well). I eat too much, I sleep too much. I vegetate. I retreat from the world. My bedroom becomes my world. ADs get me out of my bedroom.

[OneMoreTime]

For the full picture on AntiDepressants, see here -
http://www.depression-management.info/antidepressants.html

info below is from what is the best website I've even encountered on Depression --
http://www.depression-management.info/

Vagus Nerve Stimulation (VNS) Therapy

The FDA approved the VNS Therapy System by Cyberonics, Inc. (http://www.cyberonics.com/) in July 2005 as an adjunctive long-term treatment for adults with chronic or recurrent treatment-resistant major depression (those who have not had an adequate response to at least four courses of conventional antidepressant treatments).
The FDA's post approval requirements include post approval studies - one study will follow 1000 patients receiving VNS therapy for five years. Click here to view the FDA's approval letter. (http://www.fda.gov/cdrh/PDF/p970003s050a.pdf) At the end of this 5-year study of 1000 patients, they will reappraise their approval.

The main reason it was approved is that its use in epilepsy has a long period of verying basic safety, but it has not yet have proven results.

VNS Therapy has been in use in the U.S. since 1997 as an adjunctive treatment of difficult-to-control epilepsy. Some of these patients (being treated for epilepsy) have reported improvement in mood, alertness, and memory.

These benefits may be due to improved seizure control or may be a direct result of VNS therapy - or a combination of both. In other words, the reports of patients may reflect an artifact of the alleviation of epileptic seizure activity. VNS Therapy has been approved for use in Europe and Canada for treatment-resistant depression since 2001.

What is VNS Therapy?
VNS therapy involves stimulating the vagus nerve, which in turn stimulates brain. The vagus nerve extends from the brain through the neck to the major organs - a major communication link between the brain and body.

A small battery-powered device (a pulse generator) similar to a pacemaker is surgically implanted in the chest, connected by a lead to electrodes that connect to the left vagus nerve in the neck. The device sends small periodic electrical pulses to the vagus nerve, which delivers these electrical pulses to the brain. The pulse generator can be programmed externally by a computer, and can be turned off with a special magnet.

How Does VSN Therapy Relieve Depression:
It is not known exactly how VNS therapy relieves depressive symptoms in some people. Stimulating the vagus nerve and the brain through the vagus nerve may trigger the brain to release mood-regulating neurotransmitters or alter the way in which they are transmitted.

How Effective is VNS Therapy for Major Depression?

It appears that 30 - 33 % implanted with a VNS Therapy system report at least a 50% reduction in symptoms of depression.

Only 15% of patients will have full or nearly full remission of the symptoms of depression. Many (but not all) of these patients were still being as well benefitted 2 years after the surgery.

67 - 70% will have no reduction in depression or less than a 50% improvement.

There is no way to predict which patients will respond to VNS therapy.
It may take several months before any benefits are noted.
Improvements may not last.
Some people may not benefit at all.
Some people may even get worse.
There are risks and side effects and special precautions must be taken.
Side effects:
The most common side effects of VNS therapy are hoarseness of voice, cough, tickling in throat, neck pain, shortness of breath, sore throat, and difficulty swallowing. The side effects generally occur during the stimulation periods (which usually are programmed to occur for 30 seconds every 5 minutes). Side effects tend to lessen over time. However, some side effects may continue, especially hoarseness of the voice.

Hoarseness of voice (the most common side effect of VNS therapy - experienced by over half of patients) often continues for the full length of VNS therapy, as long as the stimulator is used.

PRECAUTIONS:

VNS Therapy system may interfere with other implanted devices such as cardiac pacemakers.
If a person with a VNS therapy device needs an MRI, special precautions must be taken. A person with a VNS stimulator should not have a full body MRI.
A person with a VNS therapy device cannot have diathermy. This includes short-wave diathermy, microwave diathermy, or ultrasound diathermy (diagnostic ultrasound is still safe). Diathermy is a therapy (often used by physical therapists) used to treat pain, stiffness, etc, in which a device is applied externally to deliver energy into a person’s body. Diathermy may cause any part of the VNS therapy system to heat up and cause temporary or permanent damage to tissue, nerves, or blood vessels – even if the VNS therapy device is turned off. If there is damage to blood vessels, death could occur. Any part of the system is subject to overheating from diathermy.
Even if the pulse generator is removed, the lead (small wires) and electrodes attached to the vagus nerve may be left in place (to avoid damaging the vagus nerve) and special precautions must still be taken in regards to diagnostic MRIs and diathermy treatments.Click here for the Depression Patients Manual (http://www.fda.gov/cdrh/PDF/p970003s050d.pdf)for the VNS TherapyTM System by Cyberonics, Inc. This article is a pdf file written up by the FDA (the Food & Drug Administration of the govenment).

[DiMarie]

Ada,
I don't think you sufffered from severe chronic depression, before, that you never got out of bed or took care of yourslef prior to Bills passing. I know it is tough, I lost both parents, not my spouse, so While I had so much depression over thier loss, it still was not Tommy so I can't imagine.

I know when I went through my divorce and had to find a job, with small children and a husband that got a highschool pregnant while I was having our third I was devestated. I was likely much like your friend. I had my kids to think of and when my little one came in and siad don;t cry anymore Mommy, woke me up.

It took a year, about that time I went back to school, took some clases finished my Associate Degree. I joined a group, got involved in community things. I met a few friends that cared to call me, get me out ocasionally. Then I remet my future husband. Years before, we had married others, divorced when spouaes got pregnant by others and then we dated. For 13 years, then decided to marry over 14 years ago.

My depression was gone, although I always have sad events, the parents death, my kids health problems, my health problems, money issues. But what I found was, I needed coping skills. I found a wonderful psych that dealt with chronic pain patients how it affects their life. We had many things that helped reivent me to aperson I like and am.

I first met him to help my daughter and realized, he was my biggest advocate. He knew what I didn't know. I had loss my job as Chief, I was never going back to it, I had so many losses, but I had to morn that life, now at a year I told him, I think I would go to school. He was killed in a car accidnet before I enrolled, but weould be so glad I did it.

From there you know I did go back, I excelled, found a part time job, and do really well there. It is not the life I expected, or the pride I had in my position before. My prior coworkers treat me like a peon with no professional respect anymore......It was one of their own's neice that hit me in the car accidnet....

But, I realized, the Effexor, the prozac, etc. had side effects, they masked, I was much better getting grip, finding good days, crying through bad days and doing it on my own. I take ativan for panic anxiety, but no where like I did. Maybe 30 in a year.

Surgery for the stimulator...if there is a physical reason for depression, not a loss, an emotional crisis is considered. But, Ada, until you morn, find quality of life to go on, I am not sure the stimulator will help.

The person I met that had the surgery, had a life long battle of depression. But, if he were to lose a sibling, or parent, I don;t think his stimulator will avoid his grief.

Our friends that have a more difficult time getting over the loss, were generally people that were totally dependant on their spouse and isolated from others. Finding a friend that also loss a spouse, attending a grief support group, volunteering a day a week at a hospital gift shop etc, may help better then anything to find a new Ada.

Bill would want to watch you and see that your are a star shining and filling others with love and kindness.

All my love.
Di

[heyjude5050]

I work in a surgical suite and this summer was the first time that I heard of a VNS. One of our surgeons implanted one in a male patient to perhaps decrease his seizures.
He was an extreme case due to the fact that his seizures where continuous and limiting his quality of life. This was an attempt after many alternatives were tried.
The procedure did not take long and the gentleman was conscience and speaking before he left the OR.
I spoke to the Doc about it and he did mention that it was also used for certain types of depression. From what I remember it is sort of like a putting in a pacemaker. It is under the skin and when done by a qualified surgeon it is a safe procedure. Do your homework on the VNS and the surgeon you would be referred to.
Judy

[dreambeliever128]

I have lived with depression all of my life to the point that I have been suicidal sense I was old enough to remember. I have tried several times. There is not a day goes by that I donot want to kill myself or live.

I have seen 4 Physchitrist and 2 Physchologist and have been in councelling for 8 years weekly.

I have tried every med out there. I spent 2 years on Prozac and 1 year on zoloft and they made me even more suicidal. I signed myself into a mental institution and because they couldn't find a med that I could take they soon put me out. They said if I couldn't take meds then I could not get well and 2 Physchatrist have wanted to do ect's on me and told me that I would never get well if I don't have this done.

Every med that I have taken has made me worse or the side effects were so bad that I couldn't take them. The more I got into my system the worse the side effects have been.

I deal with every symptom that you have mentioned. 3 years ago I had to sign a living will because the Drs. were worried that I might try to kill myself. I have no doubt in my mind what I have been through and what I continue to go through today.

This is not something we thought of overnight. We have talked about going this route with the vns for the past 2 years. We had to wait until it was approved by the FDA.

I realized a long time ago that I would never get well from depression unless we did something drastic and this is what we have decided to do. I trust my Dr. and I fully intend to study on it more and do what I need to do to understand it but I honestly do see it as my answer and so does my Dr.

I have lived in hell for all of these years with this depression and a person has to walk in my shoes to know what I have been living with. Everyday is a challenge for me to keep from killing myself and there's not a day goes by that I want to die. If a person truly lives with depression the will know what I am talking about.

Thanks for the info. you have given me.

Ada

[Curious]

((((ada))))

you are doing the right thing for you. searching for info. getting feedback.

not giving up is the best thing. i am very proud of you. i can tell you have done research and know this is not something to decide on overnight.

have you gone to the vns forum of birdbombs? i think you will find info there and others to help. besides here that is.

nobody has been in your shoes. there are members on survivors of suicide who will understand.

take care ada. we are here for you.

[OneMoreTime]

Dear Ada ....

You have, indeed, had a long and painful history of depression. One of my sisters has had a number of exceedingly serious suicide attempts, and it was only luck (or god) that she was found in time and brought back from the edge of death.

The reason I asked about whether you have been tried on Lamictal is because many bipolars are never diagnosed because they never ever have a manic episode - but a mood stabilizer is vital to helping them overcome their depression. The fact that the ADs you tried caused you to become suicidal (unless this was as a teen or in your early twenties) is more evidence of bipolar as suicide is most often an impulsive act, and impulsivity is the hallmark of bipolar, whether found in someone considered to be BPD or whether in someone who is considered to just have depression.

Bipolar II is exceedingly difficult to diagnose - often going undetected until someone is over 50 years of age. So during this year or more that you wait for your surgery to be approved, do consider this avenue wtih your psychiatrist. Lamictal is exceedingly safe and incredibly low on side effects, especially on the doses used by bipolars (as opposed to those for control of grand mal seizures). It is unique as an antiseizure med as it works so well on depression.

Thank you for your gracious response to my posts ... I realize now that you may by now be rather tired of meeting people who think you are going "too fast", not knowing enough of your particular circumstances..

Please do stay with us this year ... and even after your surgery. You have so much to teach us.

Teri

[DiMarie]

Ada, you are always there for us and so supportive, I would never know how deep the depression is. While overwhelmed with depression, I never had to fight the suicide thoughts. Must be different chemical balance.

If the stim is the way after two years they want to go, I would only check into the placement and alternatives. If I can locate the person with the stim in that spoke at NAMI I will send an email to them.

You are a blessing to be here for us Ada, knowing now the battle you have fought from not only physical, but in your soul. If things are this heavy on you, I will truely hopw the answer for a fuller better life is soon to come.
Di

I lost someone I cared about recently, and it is heavy on my mind daily.

[dreambeliever128]

Thanks again for the help.

I am not bipolar. All of the Drs. have said that.

I do have 2 caregivers. I just had one until Bill passed in Nov. and the company that my one caregiver works for brought in another one right away to help me and I suspect watch me. I have a helpline now also in case I fall again.

The Drs. can't get over how involved I am in my care and yet deal with such a degree of depression. I have ran into only 2 other people that have it to the degree I do.

I have been told that I am missing a chemical that fights off diseases and cancer. Apparently that includes depression also.

I give new meaning to the word depression. LOL I do have a sense of humor, I do look normal, I have a lot of people in my life and luckily they know what I have been through so they stick by me. I have a lot of what I call adopted kids along with my own daughter Susan and they are amazed at what shape I am in. No one thought 3 years ago I would be living, I hear that all of the time.

DiMarie, you have known me on here since around 99 on the TOS forum. I remember when I first came on here how bad off I was physically and mentally. I have came a long way but the depression is another one of those diseases that I am not going to get rid of on my own.

I put on a good front for everyone around me. Bill knew how bad my depression was and he lived with it and helped take care of me with it. He worked with my Dr. to help me as much as he could. Now that he is gone, I am on my own here at home dealing with it. It is definatly not going away on it's own.

I am very interested in knowing how people have done with it for depression, I wouldn't mind talking to people that have it in.

Thanks again for the good info.

Ada

[OneMoreTime]

Hi Ada ...

Actually, I had many doctors through the years deny that I was bipolar. MANY doctors and therapists. NOT BIPOLAR. Never had any manic episodes at all. Didn't have the right kind of history. So how did I find out that I was bipolar? How did the doctors prove the diagnosis? By discovering that I responded to a mood stabilizer. By being put on Lamictal and seeing the subtle, yet dramatic difference it has made to my functioning. They did try me on several other "mood stabilizers" with poor (and even negative) response before they put me on Lamictal. It enables ADs to do what they should do, without the bad side effects ADs used to cause me.

Bipolar is found much more frequently in those who have had adverse childhoods like you and I have. And Lamictal helps those with BPD, too.

Just wanted to pass this on to you, for someday you may be in a position to pass on this information. My life before ADs was a nightmare. But ADs made other parts of my life dysfunctional and certainly didn't solve any problems. None of the real problems.

I am sorry to hear that you are physically disabled, too -- all of these things are important considerations in your pursuing aggressive treatement for your depression. If I were you, I'd be willing to take all the risks... I am glad you are able to keep so upbeat, despite all the bad breaks like has handed you..

Teri

[Birdbomb]

I would like to add to OneMoreTime's information about the VNS. This is taken from the manuals

This device is a permanent implant. It is only to be used in patients
with severe depression who are unresponsive to standard psychiatric
management. It should only be prescribed and monitored by
physicians who have specific training and expertise in the
management of treatment-resistant depression and the use of this
device. It should only be implanted by physicians who are trained in
surgery of the carotid sheath and have received specific training in
the implantation of this device.

Not curative (depression)—Physicians should warn patients that
VNS Therapy has not been determined to be a cure for depression.
Patients should be counseled to understand that individual results
will likely vary. Beneficial results might not become evident for
months. Most patients will continue to require antidepressant
medications and/or electroconvulsive therapy (ECT) in addition to
VNS Therapy.

Unapproved uses—The safety and efficacy of the VNS Therapy
System have not been established for uses outside the “Intended
Use / Indications” section of this multi-part physician’s manual,
including (but not limited to) patients with:
�� Acute suicidal thinking or behavior (depression)
�� History of schizophrenia, schizoaffective disorder or
delusional disorders (depression)
�� History of rapid cycling bipolar disorder (depression)
�� History of previous therapeutic brain surgery or CNS injury
Cyberonics 26-0006-4100/2 (U.S.) — 9 of 20
Introduction to the VNS Therapy™ System
�� Progressive neurological diseases other than epilepsy or
depression
�� Cardiac arrhythmias or other abnormalities
�� History of dysautonomias
�� History of respiratory diseases or disorders, including dyspnea
and asthma
�� History of ulcers (gastric, duodenal, or other)
�� History of vasovagal syncope
�� Only one vagus nerve
�� Other concurrent forms of brain stimulation
�� Pre-existing hoarseness
�� Under 12 years of age (epilepsy)
�� Under 18 years of age (depression)
�� Primary generalized seizures

Worsening depression/suicidality (depression)—Patients being
treated with adjunctive VNS Therapy should be observed closely
for clinical worsening and suicidality, especially at the time of VNS
Therapy stimulation parameter changes or drug or drug dose
changes, including either increases or decreases in the stimulation
parameters or concomitant treatments. Consideration should be
given to changing the therapeutic regimen of VNS Therapy or
concomitant treatments, including possibly discontinuing VNS
Therapy or the concomitant therapy, in patients whose depression is
persistently worse or whose emergent suicidality is severe, abrupt in
onset, or was not part of the patient’s presenting symptoms.

[Dmom3005]

Hi, I'm Donna and I have a sister with bipolar, who has had the VNS,
for about 6 months now. I also have a son who is 15 who has had
the VNS for 2 1/2 years for seizures, who also has at times suffered
from hallucinations,anxiety, and other things. He still has seizures
at times, and is on three medicines that are maxed out. He wont
ever probably be seizrue free. But he does have a much better
quality of life than he did. He would tell you that VNS for him is
a success. My sister chose to go with the VNS, after it was approved
by the FDA for depression, after seeing how much it helped my
son with his many types of seizures. She has suffered from bipolar,
and been in and out of hospitals for over 15 years. Been on almost
every kind of drug there is, she is part of NAMI in Indiana.

Depression or Bipolar runs extensively in my immediate family and my
husbands too. My other son's have a form of it, and one of my other
sister's does too. I have some problems with it too, thanks to all
the troubles with my son's all three of them.

BUt regressing here, the cyberonics group, can give you the name
of people that have been implanted, with the device to talk to
of course they will have had luck with the things. But that will
be good for that side.


There are ways to locate those that haven't had luck too.

Donna

[dreambeliever128]

Thanks Donna,

For your input on the VNS. My Dr. and I started the paperwork for me Friday. It's the one thing I have been excited about in a long time. He is very on board for me to get this.

I don't expect a miracle. I'm a realist and I know that it might not do a thing for me and I also know I have a long fight first with my insurance company and then having it put in and getting it turned on and sat.

I have plenty of time to do research on it and that's what I'm doing. I got a tape and books in the mail from the company but I am also going to do my own research for it. Actually my Dr. is the one that found out about it a couple of years ago and said if it was approved by the FDA for depression then we'd go after it. It was approved in July of last year and I have had a lot going on that I didn't know it until awhile back.

I am glad it has helped your family. My family doesn't have much of a history of depression. I think Daddy had it but I couldn't get his medical records to know. Mom didn't have it and I had 9 brothers and sisters and none of them deal with it. I do have a great uncle that had it and his kids so I can't say it wasn't in the family just not the immediate family. I come from a family that is always happy and have really good lives. I am the only one that has ever went through the depression. I'm also the only one though that has delt with medical problems all of my life. I do realize that my medical problems play a big part in my depression but I also know that my depression is extremely bad. I have a nurse that has it as bad as I do and she has helped me to deal with it some and she is excited about me getting this chance. She's took care of me and been a friend for 17 years so she knows me very well.

I know there are different degrees of depression. I have seen them and as I said before I have only met two people that have it as bad as I do.

I believe that everyone on here has their own degree of depression. Some worse then others, some different then others.

Thanks again for all of the help.
Ada

[DiMarie]

http://www.vnstherapy.com/depression/hcp/

Local broadcast information. Was covered in 46 cities
Di

[Dmom3005]

Ada

Keep us posted. We that have kept up with how the kids and adults
do with it have found that the adults especially that go into it with
the attitude that any help they get is better than they were have
done exceptionally well. THey have a gift in their way of dealing
with life then. I know that for my sister she entered it thinking that
just a little of help would be better than none.

And that was what we wanted with my son and his seizures.
We thought if he got some energy and stamina that would be a
plus. ANd seizures a little better would be heaven.

Donna

[dreambeliever128]

How did it help your sister and son with the depression? In what ways have you seen a change.

I had to make myself go to town yesterday. I knew I had to keep this appt. I had. I cancel a lot of appts. because of not wanting to leave the house.

I was laying in bed a few weeks ago and it hit me that this would be my only chance of getting some normalcy back in my life. Now that Bill is gone I have to be able to take care of myself and at this point I can't do it.

Paying bills is a job for me because I forget them or lose them. Cooking meals is a job also. I never have an appetite and I just eat anything I can find fast.

I can't clean my house. I have 2 caregivers that help me. I've never been a lazy person but my mind won't let me do anything.

The company called me yesterday and they got my paperwork from my Dr. so they are going to submit it to my insurance but I know we have a long fight for it.

I was just interested in what differences' it made for your sister.

Thanks,
Ada

[LostOne]

Hi Ada, I know where you are comming from. I am there myself. I am considering the VNS after dealing with horrible depression most of my life. It looks like a very worthwhile thing to look into. and considering that you are running out of options as am I, it might be just the answer. Look into it, study it and in the end do what YOU think is best. Its your body and your life.

[Dmom3005]

In my sister's case I am not sure exactly how to explain it.

Mainly I know that she herself says that she sees a difference.
And my mother also says she can tell that it helps. I'm about 2 hours
away so I can tell you that in my opinion I believe that I see a
difference but that is just my opinion. I can't exactly tell you how
but it just seems she is happier. But then things in her life are better
at times now and she should be. But its more a inner happiness like
she isn't having the inner sadness, the anxiety and the need to get
away from the noise or the big crowds she was before.

She has always been one that has a anxiety or a nervousness to
her when she is getting around to many people she starts to feel closed
in is the best way to explain it. It used to be that you had to make
her get up and go. You had to make her stay up, and now I know she
is up lots later like to 10pm or later, she used to go to bed at 7pm,
and get up at 10am or later. But now its not unusual to get phone
calls at 10pm, or see her if I'm in the town visiting at 9am. Which
since she has her own place is really good.

SO its a lot for her to me. Does that help. But her meds and her life
have changed too, she has done lots of other things too.

donna

[dreambeliever128]

Thanks Donna for the answer.

It does help. Things can change for the good or bad but with the depression, it doesn't matter.

What I notice about me also is the numbness that I feel toward anything. Nothing makes me happy and even losing Bill, I am not able to deal with emotions as I should.

You know you love someone but you can't feel it. You know that at a party it's a fun thing but you don't feel it. You're just there.

It's as if you just exist and nothing changes how you feel inside.

The VNS most likely does help her if you see changes. I thought I would get past the numbness but I haven't. I have talked many times to my Dr. about it in the past 10 years. It actually gets to you that it doesn't go away. I'm always asking why I can't feel anything.

Everyday is the same. If you get out of bed it's ok and if you dont it's ok. You have to force yourself to go out of the house and you can't wait to get home.

I honestly think as I said people have different kinds of depression and it can be caused by something or it is just something that's there for no reason at all. I have only met 2 people as I said that has it the way I have. The other people that say they are depressed it seems to be from medical problems or something else they are going through. I think also major depression is caused by something lacking in the body compared to being caused by an incident or illness.

Thanks again for the help.
Ada

[Peaches]

High Dreambeliever128. I am recently diagnosed as being Bipolar-depressive.
I read your information about " Vegas Nerve Surgery ", and you said that you did a lot of research on this proceedure. I need to know how to get in touch with the people who sent you the information to reseach VNS. I hope you will help me. Thanks. :Sigh Peaches

[Dmom3005]

Peaches

VNS is made by Cyberonics, I'm not srue if that is what you mean
though. If you put that name in the search, it will bring up there
website. If you call their 800 number, they will send you information
about the Vagal Nerve Stimulator, and that is a start.

THere are also websites about the Stimulator that you can read other
peoples experiences.

Donna

[dreambeliever128]

The phone no is 1-800-332-1375. You can call them and they will send you a tape to watch and plenty of information.

I have been talking to a lady named Kathy there that is working with my Dr. to get it for me. She actually fights the insurance company to try and get it for people.

Hope this helps.
Ada

[dreambeliever128]

I went to see my Dr. today and I got to read the letter that has been sent to my insurance company by Kathy at the VNS company and my Dr. He wrote to her and sent her all my info and she compiled it in a letter stating why I should have the VNS. It was a very nice letter.

She told how I had tried every med out there and couldn't deal with the side effects and how I followed through with councelling for 8 years faithfully and how I had spent time in a mental institution signing myself in only to get thrown out because I couldn't take the meds after only 3 days.

She told how it cost 42000. a year to take care of patients in my shape and also about my cronic pain and that I was on Methadone for it and followed Drs. orders to the letter to try and help myself in every way.

It made me proud to read it. My Dr. says I am still in for a long haul with the insurance company though. They will most likely fight me for months but that's ok, at least I know I have a chance of getting it in the end.

It's hard to deal with the depression and it has gotten worse since losing bill. I honestly believe though that this is my only chance of seeing some improvement but I know also not to believe that it will work for sure. My Dr. is preparing me for anything that I might run up on mentally.

I just wanted to share my good news. It might not happen but I'm hopeful.
Ada

[dreambeliever128]

I just wanted to let all of you know that I got a phone call today saying I have been approved for the VNS for my depression. I wasn't expecting it to happen this quick but I am happy about it. I have an appt. on March 15th with the surgeon to implant it.

Ada

[Dmom3005]

Ada

That means that letter that Kathy wrote told exactly how good
a job you have been doing getting the help you needed. But that
it hasn't been doing the job. And that the VNS is the next step
that should be used to try and help you.

The doctor's on the panel think its a good chance that it will help
you.

I wanted to add, my congratulations for the chance too.

You have a great month now waiting.

Remember that long haul you were expecting.

Enjoy the wait.

You will have a great experience now.

Donna

[sadeyesr4ever]

Best of luck with that Ada :hug:

[dreambeliever128]

I am excited but after I got the news I cried all evening. I cried myself to sleep. I was thinking about Bill. I wish I could have had this done a year or so ago before he passed so we could have gotten to a more normal place in our lives. He was looking forward to a trip to Ca. and Arizona and I was trying to get better to make the trip with him. Deep down though I was afraid to make the trip because of how he had went down hill. He wouldn't have cared, he was always going no matter how he felt.

I wonder why it is a man can go more when he's disabled then a woman can. I made him go places the last few years by himself. I was determined I wasn't going to make him sat at home because I couldn't go.

At a time when I should be happy, I'm having a time getting there.

If it weren't for my PCP standing by me and pushing me, I don't think I'd be here today. He has been one of my best friends for the past 16 years and has helped me get all of the help I need just as he did for Bill.

All of you on this forum have been a great support to me. I can come on here and post to keep my mind off of my grief at times or just talk about it.

Thanks,
Ada

[sadeyesr4ever]

(((((ADA))))) My heart goes out to you... (((hugs)))

[Dmom3005]

Ada

Bill is there with you as a guardian angel. He is rooting you on.

He probably was there telling the insurance company that this
was what they had to do. THat it was your chance for a life.

He will be there when your ready to go on your next trip, and you
will. You'll take a trip because its what he would want to do.

You'll go somewhere do something that he would want to do.

Donna

[HopeLivesHere]

Hi All,

Ada !!
You got the ok for the vagal nerve stim so fast, it must be some kind of
record :) for those insurance companies :eek:

I have never been to this forum before ... I just found myself here reading :confused:

I really want to thank DiMarie for all you have said - It has really helped
me understand some things going on inside of me.
I want to thank everyone else too for helping Ada.

Also I want to mention I have a very good friend who is Bipolar.
He is always manic but no one ever sees the depression.
Lots of anxiety and continually moving and talking, but never sad.
So I guess it just doesn't show on the outside. It is so severe, he left work disabled over 8 years ago.
He gets upset because he always has to make the effort to keep our friendship going.

((hugs)) Ada. There is so much history behind your depression through
all these years, I couldn't begin
to understand the pain you have gone through (and still do) :hug:

I want to thank you Ada for identifying what is going on inside me.
I couldn't put my finger on it or express it but I knew something was wrong.

It is what you said about "being numb".
That is exactly what has been going on with me but I never knew how
to say it -- to put it into words.

Things you say about the way you are sound so much like me.
If I don't take medicine I have insomnia and stay up all night.
But I DO take meds and so I sleep, I sleep a lot. 12-14 hours at night and some during the day.

When my husband bought our retirement home a few months ago we left a tiny condo, for a larger very comfortable ranch style home.
SO MANY people kept saying how happy I must be to have such a nice home.
I really couldn't say that and still don't say I feel happy about it.
I don't know know how I feel except I miss my home. (I've moved a lot tho)
It must have hurt my husband so.
He is so confused about why I'm not excited, but am - as you say - numb.

As a result the same people keep asking me if I am happy here
(where I live) but I can't say yes because I don't know.
Like there is no feeling there.
That word numb never crossed my mind.

When my children & grandchildren fly across the country to visit,
my friends visit, take me out to lunch and such,
others say "How nice, are you excited?"
I can't say I am....I don't even like to go out to lunch.

I love my family and they love me a lot.
So why don't I get excited to see them - why don't I "feel it" ?
I must be excited but don't know it.
I don't say yes, I'm excited about things to people, because I don't feel excited
I only get dressed 1 ort 2 days a week when I have to leave the house,
but I don't care to go out. I only bathe because I have to and that leaves me so tired I go back to bed.
I don't say yes, I'm excited about things to people, because I don't feel excited. I lost enthusiasm, which I always had a lot of.
I started a thread before this one to explain my situation a little better.

I just wanted to say thank you Ada for giving me the words to describe
how I feel .... or don't feel .. not sure which.
Thanks for listening.
Hope

[Herb]

Dear Ada (dreambeliever128),

I happened upon your posting on another topic to which I responded and I’d like to also respond to you on this topic and too take this opportunity to wish you good luck and wellness with your VNS Therapy for TRD.

There are individuals in this life who, like myself, try to make a sincere effort to share information in a non-alarmist fashion both balanced and unbiased advocating for education of the patient and his/her support person(s) to make informed and un-coerced medical decisions in collaboration with one’s trusted, knowledgeable and licensed health care practitioners from a pro-active stance and to encourage hope and persistence.

Unlike a previous poster and her cut and pasting of information I’m sure if you also read carefully the drug inserts on many of the medications you’ve utilized you’d also read similar forms of information. The point is and which I advocate for is education as well as hope and persistence and to never give up or give in.

I’d be interested in and so would others in following your experiences with the therapy for Depression as there are so few patients utilizing this therapy for Depression (about 2,000 or so) and the fact that CMS (Medicare) has put a major damper on the therapy for the Depression patient.

My spouse was one of the earliest study subjects (D-01 study) implanted approximately 7 ½ years ago and she has been doing remarkably well as are a number of other patients with whom I collaborate.

There are no guarantees of efficacy with this treatment for Depression as there are no guarantees with any of the other treatments. For my spouse and me our 43 years of this journey has been a "Trial and Error Approach to Wellness" which has proven to be fruitful for my wife about 7 years ago.



Once again, I wish you wellness.

[dreambeliever128]

I saw the surgeon today. The VNS will be put in on a Friday. Don't know which yet, my PCP has to be there so the have to get together and sat a time and date. I am thinking Friday after next.

Hope, I will keep you up on this. I have had several people in my area wanting to know how it goes. I'm excited but scared.

Ada

[HopeLivesHere]

Hi Ada,

I am using my husband's laptop to write...not used to this.
I had a whole post written and it disappeared. :(

I'm may be close to knowing how you feel. :hug: I've waited over 4 years for an approval for the SCS and the last two for the intrathecal morphine pump with denials. :mad:
A year ago, I got approval for the pump trial. I had it, worked well, so doc asked for permanent pump.
WComp said, not only are we DENYING the permanant pump, but we are NOT going to pay for the trial either. :mad:

2 months ago the doctor told office staff to ask my Private Insurance & WComp again, to authorize the intrathecal (spinal) morphine pump. The staff never even worked on it until I called a week ago and asked them what the status was. So they asked my private insurance and got THE OK :D
The didn't ask WComp however so I told them to ask w comp because my insurance coverage is poor. I have medicare to help out also. So yesterday they called w comp and we are waiting for their answer. Meanwhile we are scheduling the surgery anyway. It may me next Friday or the week after.
I'm sitting here pretty much without any emotion. My friend said, "Are you excited?"
Honestly, I said no. I want it, I am not scared or excited, I just want pain relief. I am sure the day before or day of surgery I'll experience some emotion - I'll let you know. That is what my first post was about, not having feelings and if I do, not knowing what they are. I wonder if that is from all the pain meds I take. They may be numbing my emotions instead of my pain :confused:

I look forward to (my) & your surgeries and the positive results. I am praying for our surgeries to be successful - positive outcomes, and that we experience success without any complications. That all goes well and these things do what they are supposed to do.

By the way, I emailed you and asked in a post if you ever received the information I sent you on the splanchic block for abdominal, pelvic and hip pain. Did you ever get it? My friend had it and it relieved her pain.
Take good care of Ads...love ya, pat

[dreambeliever128]

I did get the PM you sent me on the block. I email and PM so many people I swear I can't keep up with them. I even talk to a lot of the forum girls and I can't keep up with who I have talked to and who I haven't. After Bill passed I had several to call me and I think now was that this one or that one.

I'm very excited about this VNS. My biggest worry as I posted on the RSD forum is the spread of the RSD. He has one patient that is dealing with it in the neck area of the surgery. They can't do a block in that area since it is up kind of high where the wires go. The box goes in the chest area near the arm pit. This surgeon told me he would help me if the RSD came out and my PCP said he'd jump right on it but you know how RSD is. They can't calm my worry about it.

I am hoping you do get that pump. I wanted it back in 2003 but this idiot PM Dr. at the UofC said because I had CSS that it wouldn't work for me. He also told it to another girl on the forum but others have told me that is just not the case. It would work for me.

Between WC, PM's, SS, and SSI we all have a long road to go. My insurance has already approved my VNS. The Surgeon told me that my insurance was a big advocate of this and that's why they approved it so quick.

As far as the numbness and no feelings, it can be the meds but if you are dealing with major depression you know it. I actually have a nurse that has it and she is excited about this for me so she can see how it does so she can get it if it works for me. She says she can't imagine living 5 more years like she is.

From what you have said in your post it does sound like depression to me. I would say the length of how long you have felt the way you do tells you if it's depression or not.

I have dealt with it all of my life and I am 55 years old. It got worse after an etopic pregnancy in 87 and got 10 times more worse after I developed TOS and RSD.

When I say I am excited about this I guess it's the wrong word I think just relieved. I have laid in bed many a night and thought if something doesn't happen for me then something's going to happen to me. I most likely would not be alive in a few years if I didn't get this VNS and if it didn't work.

My husband loved life and never gave up and I'm just the opposite.

I will keep you up on this. Thanks for the info on the block. My problem is when I think about doing something else I need to do for one medical problem I run up on something else that needs taking care of first. Now I am dealing with CFS again so I have to find out what to do about it next.

Keep you hope and faith up. What you want will happen if you want it to and you keep after getting it done.

Ada

[HopeLivesHere]

Glad you got the info on the block.
I thought you could plant the seed in your doctors ear in case someting really severe happens and you needed an emergency treatment. Once can only take so much pain.

I am getting the pump from what they said. Maybe next week, but I should know for sure. I had surgeries as a child, a ton of surgeries 15-20 yrs ago, 2 just before RSD and hoped I was through. This next one is the last I hope. We are getting too young -- oops, old for this. lol

I sure hope that person on the RSD forum tries those lidoderm patches. Taking meds or patches to help relieve pain gives us hope and less chance of depression. Just like the VNS is going to help YOU :D :hug:
Love ya, Pat

[dreambeliever128]

My surgery is scheduled for April 11th. I'm am excited but scared. I think this is the scarest surgery I have had. Just not knowing what the outcome will be scares me. Also the RSD part.

It's set up so I have to go for it though.

Now I am dealing with my CFS again and that is getting to me. It started about a week ago and I am so tired I can't think straight.

Hope this is it. I hope you get your surgery lined up soon and we can compare notes.

Only difference is they'll be pumping meds into you to make you feel good from the pain and mine will be wires.

Thank all of you for your support.

Ada

[dreambeliever128]

Thank all of you for your support and helping me to get through the depression and getting through this surgery.

I had the surgery yesterday and it went great. As I told Chemar in her post that it won't be turned on until the 23rd when I heal from the surgery some but I'm excited but again scared. The fear of the unknown I guess.

I will keep you up on how I do with it.

Thanks again for the support.
Ada

[Dmom3005]

Ada

I'm sorry I missed the date of the Surgery and that you had
already had it. I didn't mean to just disappear.

I just have been very busy. But you will do just fine.

And it will come and go very fast. We will be ready.

But I will probably disappear again for a while, I've got two
very busy weeks.

I'm a parent advocate, and I'm training this next two weeks.

Its been a long haul to get the parents I need to get this
chance.

And I'm also traveling to finish the year for trainings.

So I'll be looking to see how your doing.


GOod Luck.

Donna

[dreambeliever128]

I am up and runing. The VNS was turned on today. I feel like I have a tickling in my throat otherwise it's ok. It will go off 30 seconds out of every 5 minutes for now.

I'll keep you up on how I do.
Ada

[Dmom3005]

It shouldn't last for long the tickle in your throat.

Donna

[dreambeliever128]

It is less noticable as time goes on.

I have to go have some test run for my heart. Do you know wheather this interfers with any of the test that I will be taking. I know there will be an echocardiogram, angiogram, stress test and whatever else goes with the workup.

Thanks,
Ada

[data010101]

I was implanted 5/19/06, however pdoc got mixed up and so only recently "turned on". So I have about 6 weeks therapy - not helping. What settings are optimal do you think? I would like to hear some success stories!! I'm really depressed and ultra-rapid cycling!!!

[dreambeliever128]

I just wanted to update you on my VNS. We turned it on about 2 weeks after it was put in. I saw some difference with my sleeping and anxiety right away. I also was less stessed. The depression still came and went.

Two weeks ago we turned it up for the 1st time and I am having problems with my sleeping and breathing at this point. I had a sleep study done for sleep apnea and they said that the machine showed that the VNS was causing me breathing problems. I haven't slept good since we turned it up. At this point I am aggrevatd with this. I called my Dr. today in hopes that we can turn it back down.

I do have sleep apnea but since my body jerked all night they want me back in to see how much worse I am then what they were able to read. I never went into REM sleep.

I don't want to give up on the VNS but at this point I most likely want let them turn it up again. If I can get him to turn it down I will leave it there.

Hope this helps and all of you start seeing better days.
Ada

[glennablom]

I'm at .75, 250, and 5 min. Anything higher - can't do - swallow wrong way and get manic. I don't know if it helps = 7 months. Still waiting for vast improvement.

[dreambeliever128]

I am at the lowest possible setting again. I went in this evening and he turned it down. He said it could be that it don't take a very high dosage of meds for me then this might be the same way.

My depression is still there. I don't think I ever had a day that I don't wonder what I'm living for and deal with suicidal issues. They said it could take up to 6 months to see any results and maybe even a year.

I also felt like my throat was stopped up at times. I had trouble eating with it up higher, I have lost 7 lbs since we turned it up so I hope it continues to help with that part.

I was having the hardest time sleeping. After turning it up 2 weeks ago the sleeping problem go so much worse. I woke up this morning thinking I can't take it much more. It was turn it down or turn it off. Of course I am determined to give it longer as long as it don't cause me any major problems.

Good luck with yours.

Ada

[glennablom]

Now that it is turned down I don't have to take ambien every night. So much to learn about this!

[Dmom3005]

I'm sorry your both having trouble I hope it starts to work better.

Donna

[dreambeliever128]

I slept better last night. Didn't have the breathing problems.

Ada

[Dmom3005]

Good hoping that you can now find some relief for the other things too.

Donna

[dreambeliever128]

I just wanted to say that I am still having breathing problems and some eating problems with the VNS. After we turned it down I thought I would get back to where it was before in helping me but since we turned it back down, my depression has been worse.

It's been kind of frustrating for me what is going on with the VNS with me.

Ada

[dreambeliever128]

I just wanted to update on my VNS.

We have left it turned down until I get use to my CPEP machine for sleep apnea. It got worse after we turned up the VNS. I have also been sick all month so we want to wait until my stomach calms down also.

It still isn't helping me but with it being turned down it's not unusual. It doesn't bother me though anymore when it goes off. When I am stressed I notice it going off a bit more. It goes off for 10 seconds out of every 5 minutes.

Glennablom, I hope you are having better luck with yours now.

Ada

[JILLF.]

Hi My name is Jill, I just signed up for this forum. My docter is wanting me to try VNS. I have been treated for severe depression for approx. 18years, medication just does not work. Currently Iam receiving ECT's. I was getting 3 a week now thankfully Iam down to 2 a week. I was hoping that the vns would free me from ect's. I have read what ya'll have wrote, I am wondering if anybody has gotten ect's before getting vns?

[dreambeliever128]

I never got the ECT's. They were offered to me and I said no.

I have delt with depression all the way back to when I can remember. Around 7 years old. I will be 56 this month.

I have spent over 8 years in councelling and couldn't take any of the depression meds. I took zoloft for 2 years and it made me more suicidal and then Prozac did the same thing. After I had my gallbladder out, it seemed I couldn't handle any of the meds.

I haven't given up on mine. I went back in Friday evening and my Dr. turned it all the way back down to where it was when we first turned it on. I thought it was there anyway but he had left one setting up on it.

Turning it up was a nightmare for me. It has affected my breathing and also caused me to have sleep apnea. They are wanting me to have a second sleep apnea test because they are worried about my breathing.

I didn't have any trouble getting approved for mine. The insurance approved it the first time. The Dr. told me that the insurance companies are getting behind the depression issue. We thought we'd have a fight on our hands but they didn't.

There is a phone no. on here that I put on for everyone and a lady named Kathy is the one that fights the insurance co. to get it for you. She is great.

The company is very good. They have helped my Dr. with every issue we have had with it. They are hands on.

I'm one of these people that if it can go wrong it will so these issues I talked about may not happen to you.

As I said, I haven't given up on mine. I am determined to give it every chance.

Hope this helps. If you need the phone no. again, let me know and I will put it back up here.

Ada

[Dmom3005]

Ada

I really hope you get your issues straightened out. I'm so sorry that things
are still not exactly right.

Its just so frustrating I know.

I know that my sister is using a different doctor at this point because she had
to find a doctor that could regulate all her medications together, and he
happened to be able to do the VNS too.

It seems to be working much better for her. And her psychiatrist is much happier I think with it this way.

I'm wishing I could find someone like this for my Derrick, doesn't seem
his doctor has a clue at times for him.

Donna

[wickedwings]

but my insurance company keeps refusing to help with that. i have had depression for 15 years. now, it's to the point i can hardly get out of bed. i really feel that it's safer than the electrock treatments. i already have brain damage and i don't want more from electroshock. i tried a long list of medications. they either don't work or work for a very short period of time. therapy never got me out of my depression. i did everything i'm supposed to do, including lifestyle changes. i think my hubby and i will go bankrupt for this treatment. we'll pay for it, albeit by making monthly payments. i'm dying all the time, just dying. drowning. :thud:

[longhorngirl069]

There are clinical trials you could try to get into. You can get the device & surgery for free if you are in the study... See link below for study sites.

http://www.clinicaltrials.gov/ct/show/NCT00305565

[Dmom3005]

Please call cyberonics, and explain that the insurance company is refusing
to pay for the procedure and you want to know if there is any help available.

There are some programs that can help with at least part of the procedure.

I think that you might be able to get cyberonics to help with their part of
the device itself. Maybe they would even pay for 1/2 of it.

Then you could look into whether the surgeon you are looking at using
would go ahead and bill the insurance company for the procedure and
see if they would pay him for that part of it.

And lots of hospitals will help a patient with their part of the bills.

If they can't afford the bills, so you could go ahead and do the VNS,
and then go through the procedure to ask everyone for help.

But I would ask cyberonics right now if they would help you. That
way you have one part of it taken care of. And the surgeons office,
might know a way around your insurance company if you ask.

Donna

[wickedwings]

(((((dmom))))) thanks for your suggestions. i've already contacted them via e-mail (i'm deaf), so i'll know more tomorrow. i've been waiting to do this for a very long time. i'm just too exhausted to continue. i can't get out of bed or clean or function at all. luckily, i have a very caring husband who's doing the best as he can, since he works. god, i want to live. i'm unable to experience joy, excitment, or any pleasure. it's like i'm living in hell. day to day is torture. i come online during my waking hours to escape. nothing's wrong with my life, really, since we have a dog and 3 cats whom i love so much. other times, i just stare in space and zone out. anyway, i just needed a way, since i have no more energy to put into fighting my insurance company over this. i can't even sue, either. there's no way i can handle a court system like this, since i would just shut down. somebody suggested clinical trials, i can't remember who, but i tried to get in last year, but i was excluded from the study since i had a stroke 1 1/2 years ago, which was very tiny. so, i can't use clinical trials. stupid, i know, but that's just the way they are. they want specifics, so they know for sure that nothing is influencing their datas. yes, i'm educated to the level of a scientist. i did all my research on this. i left no rocks unturned. i like to be thorough, so i'm making an informed decision. i understand a lot about what to expect and what not to expect. it takes awhile for it to become effective, so i can accept that, but i'd like to get started on this. the sooner i start on this, the sooner i can experience the effectiveness (not the timing between the implantation, startup, and the beginning of effectiveness). i'm not looking for a quick-fix, but a better management tool.

it was so bad last week, so one day, i upped my cymbalta to 60 mg., as i had been on 60mg. before and had to reduce to 40 mg. due to side effects. just one dose of that totally floored me for the whole week. the side effects hit me much harder than the first time around. it was unbelievable. ugggh. i still have side effects lingering, although they died down considerably. goes to show that it's time for a med change - again. med changes are hard on me. really hard.

[dreambeliever128]

I haven't been on for a month or so but I did want to update you on my VNS.

You all know most of my story from here but there are things you all should know about side effects with the VNS.

I still have mine turned on at the lowest. At times I try to decide if I want to turn it up or turn it off.

I wasn't told any of the side effects but you can pull them up and they are endless. The two I am having problems with is breathing and swallowing.

At the time when I got it put in I didn't know I had sleep apnea. Actually I did from a test that was done about 3 years ago and the guy that did the test told me that I did have sleep apnea but the Dr. that ordered the test got mad because this guy gave me info he shouldn't have and refused to let me have it. I thought this and my Immunolgist put it into words for me a few months back. He confirmed what I thought. Anyway, my Immunologist ordered another sleep apnea test on me because of my CFS and not being able to sleep at night. He also ordered allergy test. I found I was allergic to grass, all trees, molds, guinnea pigs, and all flowers and dust. The allergies made things harder for the VNS use this summer. I now have allergy meds to help me with this.

Back to the sleep apnea, now that I have ran into this problem they are acknowleging the fact that if a person has sleep apnea it might not be a good thing for them to get the VNS.

When I had the sleep apnea test, the hospital really got worried about me. They scheduled another one. They said everytime the VNS went off I stopped breathing. I knew the VNS had made my breathing worse before they did the test but was still trying to deal with it on. We turned if off for awhile but then turned it back on and had another sleep test. The hospital called me and told me they were concerned about what the VNS was doing to me.

They ordered the sleep apnea machine in hopes that I could use it but I couldn't use any of the mask they brought me. What happens when I stop breathing is that I make this noise that the respirtory therapist describes as the death rattle. They decided to just put me on oxygen at this point. It upsets my PCP because he feels I really need the sleep apnea machine but right now our hands our tied. I use the oxygen. I still don't sleep all night. I wake up a lot and at times I have trouble breathing even with the oxygen.

I still haven't given up on the VNS, as I said at this point. I really want it to work but everyone is worried about me because of having it on.

As far as my depression, it still hasn't helped. The man that helped us turn it on at first did tell me that he knew of one person that it didn't help, well I am looking at most likely being no. 2. I still have all of the symptoms of the depression, anxiety, panic attacks and suicidal issues so at this point we have it at the lowest setting and don't know what to do next.

I am not trying to scare anyone. First I would find out if I had sleep apnea and if I did, I would talk to them about what their thoughts are on it.

Another thing it messes with swallowing. If I eat an apple it takes me forever to get it to go down, same with some pills and other foods. This is a side effect of the VNS that is also listed.

Everyone has to do what they think is right for them but do make sure you are completely informed on the VNS, I wasn't.

Ada

[BJ]

This is so disheartening Ada and I'm sorry that it's not working for you. :hug: I didn't even know this was here. I just googled it and found it that way. I was searching for people that have success stories or good results with it because I don't want any more ECTs. My memory can't handle much more of those. And I was trying to find out what happens when they turn it up.

I just had mine turned on Sept 11th and I'm experiencing all kinds of side effects especially breathing, sleeping and my throat. After they turned it on I started having sleep disturbances and they did a sleep study and found out that every time it goes off I stop breathing. So right now I'm using oxygen until the machine arrives. Like you I'm still having depressive/suicidal thoughts but fighting so hard. I heard that many don't benefit from this at all.

I'm at the lowest setting right now and tomorrow they're going to turn it up. I'm really really nervous about it because they told me something about parameter changes but for the life of me I can't remember what they said. When you had yours turned up did you feel anything happening? I don't know if it's all in my head but I think I feel it every time it goes off. And I'm afraid tomorrow if they turn it up I'll "feel" it even more.

[dreambeliever128]

I do feel mine every time it goes off. Like you it is messing with my sleeping. I am on oxygen now and it still causes me to have those spells where I stop breathing and wake up with a jerk and I can hear that loud noise I make. The Respirtory therapist says it sounds like I am describing the death rattle to her. She is worried about me having it in and the hospital calls me to check on me. After the sleep apnea test they panicked about it.

I am so desperate to give it a try though. I go back in Monday to see my Dr. and I am going to let him turn it up again. He will get me right back in to turn it down if we have to. We have turned it up and down several times. It's at it's lowest setting right now and I have had it in since April.

As far as my depression, I am no better. I still have the suicidal thoughts and can't leave the house, don't sleep at night and just don't care about anything.

I'm sorry that you are going through the same thing as I am. I am going to try for awhile longer on mine but if I see it isn't going to work we will turn it off for good.

Another thing, when I was taken to the hospital in August by ambulance the Drs. thought the magnet to turn it off was the VNS. I was too sick to explain anything about it and my daughter didn't know much about it. I am going to have to right down some instructions for the next time I end up in the hospital.

Do give yours time and see how it does but keep an eye on the side effects. I also get choked on food such as apples and can't get my pills to go down. One night last week I ate an apple and it took 10 minutes to get that apple to go down.

Keep me up on how you are doing and do give it a little time too.

Ada

[BJ]

I guess I didn't realize it was going to have these effects. Or probably I forgot. It's so frustrating trying to remember things but the only thing going through my mind is I can't handle any more ECTs.

I was discouraged when I read that you had it in since April and there's still no improvement. I was hoping, I guess like you are, that this would be a miracle. But it's a constant struggle. I too can't swallow and the only way I can take my meds is to shut if off. I couldn't even imagine eating an apple. :eek:

I'm having it turned up tomorrow and it's a bit frightening, the unknown. Good luck with having yours turned up on Monday. I hope you start to see some improvement. I'm not giving up on it yet because it's too soon. But like I said, it's just a constant struggle. I haven't been out in the "real" world in quite some time and I'm not sure how to get back in the mainstream. But tomorrow my goal is to go the mall and buy my kitty a new mouse before I have the VNS turned up. Not much but it's a start. :D

[dreambeliever128]

Make sure you come on tomorrow and let us know how you are doing. I know you haven't had yours in as long as mine but we both have to give it time.

I can't imagine going through those ECT's. They were suggested to me back in 98 but I had so many medical problems going on that my family Dr. said no. He took over my councelling to help me through what I was going through. I had heard so many stories about the ECT's that I didn't want them and my Dr. felt the same way. I did have an idiot for a Physchologist so I didn't trust him anyway.

I was not told about the side effects when this started and I didn't even think to read up on them but my Dr. and I had been talking about this for 2 years and I knew when it came out of the trial stage I would try it. I just wish I had been told the side effects up front. If you go and google the list there are at least 40 side effects from the VNS.

I have never used my magnet to shut it down because I was afraid I wouldn't turn it back on.

Another worry I had was what if I needed it turned off and my Dr. was gone but so far that has never happened. He has been good about checking on me before he leaves town to make sure I am ok with it.

As I said, I am going to have him turn it up next week but let me tell you, I will make sure he's in town until I get use to it. We have had to turn it down twice so far and I know it's a possibility it may have to be turned down again.

Let me know also if you can use the sleep apnea machine. I can't because the mask has to cover the nose completely and that leaves me to breath through my mouth and the VNS keeps that from happening all of the time.

Good luck tomorrow.
Ada

[BJ]

I didn't want the ECTs but since I can't take anti-ds because of mania I signed the consent form. The days of treatment weren't so bad because they put you out for them. Then the achiness and headaches start for a day or so. But now I'm having such a hard time with my memory and it's so frustrating. :confused:

I know they told me about all the side effects but I know I forgot. With each one my memory got worse and worse. I just hope it works for both of us. :hug:

I was going to go to the mall but I'm starting to panic so I'll put that off. I'm a little apprehensive being around people at the moment. So I'm leaving in a few minutes to get it increased. I'm just so nervous. :(

[dreambeliever128]

Like you, I have so much trouble leaving the house. I will make plans the day before to do something such as go to town and then when morning comes I start thinking I'll just go another day.

There are times I won't answer the phone then everyone gets to wondering where I am.

I have trouble caring about anything. You don't have much feelings with depression. You know you love somebody but you don't feel it, it's like you are just there.

Nothing seems to matter. I'm still basically the same way with the VNS in me.

Do you get newsletters. I get one about every 3 months. I noticed this last one talked about sleep apnea now.

It's going to be interesting to see where we are in a few months with this. I don't have BP so that is not something I have to deal with although I have been around a lot of people with BP and it is a very hard disorder to control I believe even on meds. Oprah just had a show about it Tuesday.

That brings up another subject. When I first got ok'ed for the VNS I was not asked about any of my medical problems which I believe are keeping my depression from getting better. I was actually surprised that they had ok'd it for me without asking about other medical problems.

Were you asked about the BP or did they discuss it with you?

Ada

[BJ]

I never had problems leaving the house until I've been "away". I just feel like there's a stigma attached to it. I didn't want it that way but I had to protect myself. :o

No I don't get any newsletters because I'm afraid to read anything. It took me so long to except that I'm BP but this is so different. Grief and accepting a loved one's suicide is so hard to overcome and no amount of counseling will help. You have to do it yourself.

They knew about the BP because I was "away" that's why I was there. I was just so overwhelmed with everything. But they said Lithium is not for me and it's what almost killed me. Definitely not my mood stabilizer.

I wish I could help you more Ada with depression. It's a battle so I hope you have someone there for you. :hug:

I was turned up today and my throat is tickling like crazy. I was up almost all night last night for worry and the tickling. It's a battle but I can't give up on it yet. I wanted to go to the beach this weekend but my pdoc said not to go too far with the parameter change. So I can't. But she's going to check on me constantly to see how I'm doing which eases my mind a bit.

[dreambeliever128]

How are you doing today? I am anxious to see how you are doing with the VNS turned up.

I was just thinking of my depression today and realizing how little this thing has done for me.

I am anxious to have mine turned up tomorrow. I just worry about the outcome.

You will most likely start getting newsletters soon. I didn't sign up for them, I think they are a package deal. I believe they come every 3 months.

I have several people watching me to see how mine does. It bothers me that I have nothing good to report about it. I have a nurse that is interested and a lady that works in the Drs. office for her sister-in-law. There are a couple of others I have met waiting to hear about how I am doing with it. I just hate to report anything negative so I am waiting awhile longer.

I sure hope yours helps you. I was told that it might not help me due to the extent of my depression but to me it was worth a try.

Hope you are seeing some better days.

Ada

[BJ]

Hi Ada. I'm not liking it at this setting. Every times it goes off I feel like I'm choking and can't breathe. I'm getting so breathless even just going up and down the steps. And I'm not sure if it's from this or the ECTs but I've had a headache since she turned it up. I was afraid to lie down last night because every time I did I felt like I couldn't breathe. So I slept in the recliner, well tried to.:Zzzz: I don't know what it is but I seem more depressed today but maybe it's from lack of sleep and frustration over my memory loss. It's so draining try to pull things out of your cob-webbed brain. :confused:

I'm trying so hard not to get discouraged and give this time to work. And I'm sorry to hear that's it not working for you Ada. Maybe when they turn it up?

Let me know how it goes tomorrow Ada. I hope it's easy for you. :hug:

[dreambeliever128]

I didn't get the VNS turned up yesterday. I needed some triggerpoint injections for pain so he gave me those. I go back in tomorrow as his last patient so he can turn it up and stay with me for awhile to see how I do with it.

I will let you know tomorrow evening if I get everything done. My Grandson also has a football game tomorrow.

I hope you are having a better day.

Ada

[dreambeliever128]

I got my VNS turned up tonight. It is messing with my voice more but it will take me a day or two to see how it is going to work.

My Dr. wants me on the Cpep machine but I have to find out if they have a mask that will work for me.

How are you doing with yours. Make sure you keep me up on it.

Ada

[dreambeliever128]

I was wondering how you are doing with the VNS turned up. Mine isn't messing with my voice too much but I haven't been able to keep my Oxygen on all night. I end up jerking it off. Now my Dr. wants me to find out about a mask that will work with the CPEP machine. I'm doing some reserch on it.

As far as helping with the depression, it is not doing anything to help with it. I honestly thought he had turned it down because of the way I felt this morning when I woke up.

I hope you are doing better then me with it.

Ada

[Dmom3005]

BP

Please call your doctor and get in and have some adjustments made.

Your VNS shouldn't be making you feel like your going to choke. It will
also add to the stress and depression issues.

I'm sorry ladies that your not having more relief from this.

Hopefully it will start to work with more time.

Donna

[Curious]

just a little update on bj. a lead came off and she was scheduled for surgery this last thursday.

i'll post a link to the thread in just a sec.

http://neurotalk.psychcentral.com/showthread.php?t=28371

[dreambeliever128]

I am sorry I haven't posted sooner. With the surgery last month and then my husband Bill will be gone a year on the 21st. The day before Thanksgiving. I am having a hard time with all of it. I wake up thinking of him and go to bed at night thinking about him.

We are having a family dinner on the 22. It's going to be rough. The main thing I have to do is keep up a front for my 2 grandson's. Dustin mentioned to me Tuesday night that he'd be gone a year this month.

The kids got me another vehicle and the boys are keeping Bill's truck to fix up. They didn't want us to sell it.

As far as the VNS. I am frustrated about it right now. I don't sleep at night. I wake up every hour or so . Last night I was waking up every 15 to 20 minutes. I woke up once thinking I had been sleeping for awhile and I'd been to sleep about 2 minutes. Did it again later on in the night.

It's only on .25. We are suppose to turn it up next Wed. but I am just so discusted with it. I keep saying I'm not going to give up on it, but I'm getting closer to saying lets turn it off.

I have several people around here following me to see how it's going to do so I don't know what to tell them.

I wish the company had come forward with more of the side effects instead of just saying, let's do it. I don't understand why no one called my Dr. nor me and told us about the side effects. There are a lot of them.

Anyway, I am still hanging in but it's been rough.

BJ, my friend, I PM'd you and have tried to call you, I hope you are doing better.

Ada

Ada

[BJ]

Ada I'm sorry the VNS is working for you either. I know it's supposed to take a while but it does get frustrating. I was hoping for this light to switch on and say all will be well but it hasn't happened. It's a constant struggle just to get up and go to that dreadful job. :( I wish I had known more about the side effects too. But everything was thrown at me and I didn't know which way was up. My sleep is so disturbed and I don't even know if I've been sleeping or not. :confused: And the constant tickle and hoarseness when it goes off is so annoying. I'm at .5 now and I think we're going up to 1.0 eventually. My doc said that it's "supposed" to be annoying but not painful. Yes, it's annoying that's for sure. :(

I know how hard this anniversary of your husband's passing will be on you. Just know that I'll be thinking of you on the 21st. Tomorrow is 2 years since I lost my dad and I can still see him lying in the ER like it was yesterday. :( I hope you are able to enjoy your Thanksgiving with your family. I know it will be hard but I know you can do it. :hug:

[Dmom3005]

Sending you both hugs on these rough days.

Hoping that things start to look up.

I haven't been around in a while. But I think about you a lot.

Donna

[Herb]

Dear Ada et al,

I would like to interject some information which you may or may not have considered.

First by way of brief introduction my spouse, Joyce, was one of the earliest study subjects for VNS Therapy for Depression. This December she will have had a pulse generator for about 8 years with one replacement and in her case history the results have been pretty remarkable.

I also established a website as a repository of information that I’ve garnered through the years relating to the therapy, our experiences, research and knowledge as it relates to the VNS Therapy and references to other sites and forums sharing information relating to the therapy.



I would like to make you and the readers aware there are other parameters which can be adjusted to overcome many of the encountered side-effects. It seems you have basically only discussed the amplitude settings of the device. There is also the pulse width and frequency settings which when lowered may solve some or all of the side-effects as well as the on time and off time settings.

The magnet should not damage the prosthesis and when used by the Depression patient by placing and holding directly over the prosthesis will deactivate the device. Upon removal the prosthesis will automatically reactivate and continue cycling as per the programmed parameters.

What I have also learned through the years is the fact that higher amplitudes do not necessarily constitute efficacy. I have read of a number of patients responding at lower amplitude settings so this should be taken into consideration. Until the current and ongoing dosing study is completed there are no definitive answers as to what are the proper settings.

One of the key points I seem to be learning is that time, which includes patience, may be a key factor in achieving a favorable response. I have also read and collaborate with patients that first began responding after a year or more. Once again, each individual is unique and so too there response to any treatment.

As a very, very long time support person and care giver to my spouse Joyce, we’ve learned there are no short cuts nor any guarantees and that there are some major side-effects from various treatment options. I also firmly believe one should not have to endure any pain or unusual side-effects from the VNS Therapy if one takes the time to be educated to all the parameter settings and learns to make adjustments. One need not attempt increasing amplitude on a weekly basis etc. In one of the other groups in which I participate we often discussed “the sweet spot.” Several patients found favorable responses but continued to increase amplitude and seemed to have lost the benefits only to lower the setting and regain a favorable response. In my opinion, proceed slowly, have patience and when a favorable response is achieved, “Leave well enough alone.” Even if the amplitude is set low one is obtaining therapy 24/7/365. Remember too, this is supposed to be an adjunctive therapy to ones current treatment regimen so one might consider leaving the VNS at comfortable settings and making adjustments to the primary treatment regimen.

I do hope I’ve been able share some worthwhile information.

I wish you all a Happy and Peaceful Thanksgiving and most importantly, wellness.

[dreambeliever128]

Thank you for this info.

I am going to run off a copy of your post and take it to my Dr. Friday. We turned my VNS up last Wed.

When we first turned mine on it seemed like it was going to help. I had it on for about a month and I was sleeping better and felt better. I had to have a surgery so we turned it off and after that it didn't seem to do a thing for me.

Also, I wanted to say on the settings. I called the company myself as did my Dr. and they told both of us that there was no other way to set it up. I talked to two different people. I will call them back though.

My pain comes from cronic pain from other illnessess and that seems to make my depression worse due to the pain from those.

I don't sleep at night and my mind is constantly racing and I am always stressed. I was this way before the VNS was put in.

Thanks again for this info.

Ada

[BJ]

Thanks for this info Herb. I know and my doc has told me to be patient with it and give it time. But it's frustrating especially when things keep dragging you down. We've been playing with my pulse width setting to relieve some of the breathing problems I'm having and the constant feeling of pressure in my throat when it goes off and like Ada, I can't sleep either. We haven't hit that sweet spot yet. :(

I don't know what this means but my settings are:

Output: .5 mA
Signal frequency: 30 Hz
Pulse width: 250
Signal on time: 30 sec
Signal off time: 5 min

Ada hang in there friend. I hope when you see you doc on Friday they can make some adjustments and it starts doing its thing. :hug:

[dreambeliever128]

I am going to ask my Dr. to shut the VNS off. I was going to give it until April. It will be a year April 18th and I wanted to wait that long but I don't want to anymore.

I don't like it, it's not doing me any good. At times I feel it is making me worse.

Ada

[Alffe]

(((Ada))) I'm keeping you in my heart and in my prayers...I know you are struggling to keep it all together. :hug:

[dreambeliever128]

I see my Dr. today at 12. If he had not seen me, I swear I would have went to the ER to see if they would shut the thing off.

It has made me physically and mentally sick. Now that I have read stories on the VNS website about the horrors of it, I know I am not alone in dealing with the VNS side effects.

I am hoping he will be ok with turning it off. I called down yesterday and they left him a note so I am sure he knows already. He is only there part of the day today and I wasn't sure he could get me in but they did.

I hate the ideal of not being able to turn this thing off myself. After going to the ER in July and having surgery in Sept. and now dealing with the panic attacks and everything else I am dealing with this week, it makes me even more furious that we have to depend on someone else to shut it off for surgeries, ER visit's and so on. Some people might not mind this but I do.

Thank you so much for your support.
Ada

[kephacantor]

I have a Vegas Nerve Stimulator. It was implanted Nov 2005. I have Temporal Lobe Epilepsy. I also suffer from severe depression. Every person must of course decide these things for themselves and you know your own body more than anyone else. However, I feel I must share the many negative side effects I have suffered since the operation - none of which have I found in any material I was given nor was I warned by the neurologists or neurosurgeons.

The one thing I was told was that I would never sing again. This may be no big deal for most people, but my ministry is in music. I write Christian music and this was taking away my purpose in life. Still, because my problems were bringing trauma to my husband and sons, I finally decided to go through with it.

It has been the biggest mistake of my life - and I'm not talking about how it changes your voice. I have been more depressed than ever and all I do is cry. If I'm not crying I find myself yelling and not making sense. I am constantly having flashbacks of the worst moments of my life.

I don't know anything about your private life or other than brain chemistry if there are reasons for your depression, but if you've ever had any horrible memories I strongly urge you NOT to get the VNS. It also hurts. I can feel the pulse. I actually hear it in my left ear. I'm going crazy with these side effects. I had my left lower molar pulled because the nerve goes up your neck past your vocal cord - where they also make an incision - it's not just your armpit - then across the jaw line and up the back of your neck. This elliviated some of the constant pain I am experiencing. But I still have a constant headache.

The Vegas Nerve also extends into your stomache. If you suffer from any acid indigestion this will increase, as well as other digestive problems such as stomache ache, ulcers, and diarrhea.


God bless you as you make your decision. I may be suffering, but perhaps I can prevent someone from going through what I have gone through.

~ kepha cantor aka Rock Singer

[dreambeliever128]

Thank you so much for your input on the VNS.

You are so right about the stomach problems. I had to have part of my intestines taken out back in 95 and I have Peptic Ulcer Disease, GERD, Esopogeal spasms and heart problems.

It made my stomach problems multiply. I am on Prevacid and I had to start taking 2 a day and it still wasn't helping.

I started having panic attacks as I told you and they were so bad that I thought I would go crazy. My PCP wants mine back on low and I told him the only way I would do it is if he will answer my calls if I need him. He always has but that week he was out of town. 7 days of it made me want to keep it off forever but since I am so loyal to him I am willing to try it again on the lowest possible setting.

Also, I do have old memories of being molested as a child and I lost my husband a little over a year ago and I am still having a hard time with that. We just put his dog to sleep a few days ago and that brought the memories back even more.

I have had a history of medical problems for 20 years and have had 21 surgeries since 95 and going to have one in Jan. so again we will have to turn that damn thing off for it. I keep forgetting about this. I just had a surgery in Sept and we had to turn it off. That means I will have to start all over.

I had side effects that weren't mentioned on the list and the list has over 50. The one that I found on the internet did anyway. The books they send you from the company sure don't mention any of them before it's implanted or after.

It is a very hard call. My depression has been extremely bad since I got sick in 87 to the point of being suicidal and they have wanted to do ECT's on me but I didn't want them. This was the only option we could see at the time. My Dr. has been there with me for the long haul of the depression. 17 years of it anyway. He knows my history all too well that's why we opted for this.

I just don't know about it. I am tired of not sleeping at night because of it. I wake up everytime it goes off. I go to sleep and think I have slept for an hour and it's been the time between it going off.

I was glad to have your input on it. You didn't say if you were going to turn it off or not.

Please keep us up on how it goes for you.

Ada

[dreambeliever128]

We turned the VNS to .25 Monday and today I have it taped off. I am dealing with a lot of depression today. I think it comes from the pain from my syndromes being worse and missing Bill a lot today. I honestly don't know if the VNS has anything to do with it.

I am to the point that I don't know what to do about it anymore. My Dr. offered to turn it off today since he is leaving town for a week but I said no. I might be making a mistake but I am just to tired to even get dressed to go deal with it.

I have my doubts as to wheather it's going to help me.

Ada