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looking for answers on migraines

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Unread 10-27-2012, 04:31 AM   #1
Sam
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Default looking for answers on migraines

I'm looking for any additional advice on diagnosing intractable migraines. Mine started at 18 and have gone on through the years to increase in severity. Over the last ten, i've had multiple CT scans, MRIs, dye studies, bloodwork, psych evals, allergy tests and others to try and find the underlying cause. My Dr. has tried all the new and older migraine medications, cardiac drugs and antidepressants that had been shown to decrease migraines in low doses. Injectable, non narcotic meds including ketoralac, botox related drugs and others that I can't remember the name of off the top of my head. I've tried chiropractors, accupuncture, accupressure, biofeedback, and exercise. Made dietary changes to delete as many migraine triggers as I could identify. My Dr., a pain specialist and boarded anesthesiologist has refered me to several nuerologists and I have a peripheral nerve stimulator with leads around the effected eye.

When nothing helped, (he still looks), he resorted to narcotics, which he says is usually not recommended for migraine treatment. Due to tolerance built over time to the medications, the doses have been increased several times. There is a vascular test of some sort that can be done, but because of the peripheral nerve stimulator, nothing magnetic can be used anymore. (No more MRIs either for the same reason). It took several surgeries to get the leads in the right position, and taking it out for another test is out of the question.

I used to have to lay flat when I had breakthrough pain, (the migraines are there all the time at a 7 out of 10 pain score while breakthroughs are off the chart). For the last ten years, I've only been able to sleep in a semi-reclined position, even if I sleep on my side, which has resulted in anatomical changes in my back. (More chronic pain), and the rescue injections have left me with the inability to bend my legs more than a 120 degree angle due to scar tissue in the muscle.

Has anyone else found themselves where I am and had success with any other diagnostics? I'm only 49 and worry that I will lose all of my mobility in a few years. When not at work, (two to three half days a week, lately only two), I'm confined by the pain to dark rooms and am rarely able to get out. My Dr. is one in a million, even driving a medication script into the pharmacy for me once. He has consulted headache clinics, nuerologists and anything he can find, but so far, we have already tried it.

Any ideas?
Thanks,
Sam
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Unread 10-27-2012, 03:35 PM   #2
Dr. Smith
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You may have tried these already, but...

In my search, one specialist I was sent to was an opthamologist at a major medical center/teaching hospital who specialized in migraine. I went through a 2 hour evaluation with all kinds of eye tests. Ultimately that was not my cause, but for someone else, with a significant eye component... (?)

http://www.livestrong.com/article/12...aine-symptoms/

Also in my area is a neurologist known by his colleagues as "the headache guy" because his practice is limited solely to headaches/migraine. He DXed me with 3 questions, which blew my mind since I'd been suffering & searching for years. (Treatment was a separate issue -- knowing the cause doesn't necessarily present any guaranteed cures/treatments).

During my multi-year search, I found (as I'm sure you have) innumerable sites that described migraines, their types & causes. Some of the sources surprised me, e.g one was a chiropractic site, another was a nursing site.

http://www.dynamicchiropractic.com/m...&proxyreload=1

(Cannot locate the nursing site)

I hope there may be some clues/ideas here for you.

Doc
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Unread 10-28-2012, 03:13 AM   #3
Sam
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I've never been evaluated for eye problems beyond the diagnosis and treatment of a corneal ulcer. That one I haven't tried. I have an appointment next month with my pain doc, and I'll ask him if that is something we should pursue.

Thanks,
Sam
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Unread 01-20-2013, 01:42 PM   #4
musicofnote
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Don't want to step on anyone's toes, but our whole family suffered from simple and/or chain migraines. Through a series of coincidences we came across an acupuncture therapist, a Chinese lady, educated in China. My wife and I didn't originally go to her for the migraines, but rather for other things. My wife for arthritis pain and me for back pain and numb feet due to idiopathic polyneuropathy (which has now swung in the the other direction to over sensitivity, while still being rather numb, but better than before acupuncture).
During the course of the session, I mentioned to the therapist one day, that I had a horrible migraine and she set a needle in the webbing between my left thumb and index finger. It hurt like hell - I actually slammed her on the wall of the room unintentionally from the reaction. The long and short of it is, that I still do get migraines, but only once every couple of months. My wife heard of this, had a couple of sessions with the same point being stuck and she's pretty much migraine free.
My daughter went to her for allergies and for then for migraines. She ended up doing her senior high school thesis (we live in Switzerland - different school system) on a comparison of western and TCM migraine treatments. She still gets them once very 4-6 weeks, but no chain migraines anymore. She's finished medical school here and is starting her first resident job at a local hospital in 10 days.

It doesn't work for everyone, but then again, what "normal" western method does. I think it's important to find a therapist who knows what he/she is doing. Not always easy.
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Unread 02-06-2013, 06:42 AM   #5
dds4life
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Default Your Chronic Headache is most likely due to your TMJ

The TMJ and bite related chronic headaches are overly under diagnosed. Please see a TMJ specialist in your area or ask me if you have any further questions
I have been treating TMJ patients for years and it sounds like what is going on with you. Thanks
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Unread 05-21-2013, 07:47 PM   #6
Magirose
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Hi yes this is so familiar not being able to lie down properly....migraine that lasts days on end. Do you get stiffness in your neck too? I have a diagnosis now and treatment for my problem. It took literally years and years to get here. Neuros couldn't help me either. Not sure where you are based otherwise I might be able to make suggestions about where you could go for treatment/diagnosis. M
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Unread 05-24-2013, 11:31 PM   #7
Dr. Smith
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Quote:
Originally Posted by musicofnote View Post
I had a horrible migraine and she set a needle in the webbing between my left thumb and index finger. .... The long and short of it is, that I still do get migraines, but only once every couple of months. My wife heard of this, had a couple of sessions with the same point being stuck and she's pretty much migraine free.
I've heard of something similar in a pressure point in the same area -- in fact, it's mentioned here:
http://www.wikihow.com/Use-Acupressu...aine-Headaches

Googling: migraine pressure point and/or migraine acupressure point will turn up several articles on various acupressure points for migraine. I've found a few of my own along my hairline and at the base of the occipital bone (another fleshy area) that I've not seen mentioned elsewhere, which leads me to suspect that they're different for everyone and worth looking for/trying.

Best wishes,

Doc
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Dr. Zachary Smith
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Unread 11-11-2013, 06:29 PM   #8
Synnove
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to Dr. Smith
this is regarding your post here on the migrane topic from 10/27/12.
Well, it was so familiar to me when I read it. And when I read the reply saying how strange it was to be seen by an opthomologist for migrane, I could understand one would think so, but on the other hand, I knew that this was a possibility.
It is now going on 3 years since I went to my regular opthomologist for an out of the usual yearly check ups. I had a strange visual episodes with a zigzag pattern bright light ring in my visual field happening twice. The doctor set me up with a stat MRI of the brain. He then called me at home, he had set up appointment right away with an interventional neurologist due to the fact that the MRI showed a cerebral aneurysm.
Well, I say this good eyedoctor saved my life. I had the aneurysm repaired,
have since had a tonn of neurological stuff, but as far as the aneurysm, I was just glad it was found before it ruptured
HERE IS MY POINT
i WENT FURTHER TO INVESTIGATE REGARDING THIS SCOTOMA IN MY VISUAL FIELD.
I saw a neurological opthomologist. He said, You are lucky you went to Dr. --- so so, for had you come to me right away, I could have told you that those scotomas, they are Aura before migrane. I said I really did not think I had migrane, but had head aches, but never with nauses etc. He said I have migrane. Sometimes one can have migrane without head ache. Some times one can only have aura. So this was all new to me
Now I am also dealing with something else. I have had episodes that neuro said could be simple partial seizure, so they set me up, and I had 72 hour video monitored EEG. I realy did not happen to have a severe of those episodes during my stay, so no seizure observed, but the neuro think it can be migrane related.
Well This goes to show that migrane can be complicated, and can have many symptoms Thanks for reading.

Last edited by Synnove; 11-11-2013 at 06:40 PM. Reason: had to add something
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