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3 years of 24/7 headache

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Unread 11-24-2012, 09:49 PM   #1
medstudent99
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Default 3 years of 24/7 headache

I am a med-student who has been suffering from 24/7 bilateral eye pain and frontal head pain for over 3 years. This constant, dull, soreness and sensation of pressure has become totally disabling and I've had to completely withdraw from school and almost all other activities. I have literally seen over 100 doctors all over the United States including Ophthalmologists, Neuro-Ophthalmologists, Neurologists, Neurosurgeons, NeuroRadiologists, and Cardiologists. I have taken a myriad of different prescription medications for the pain, but they only provide short-term 30% relief of the pain at best. I was diagnosed with Idiopathic Intracranial Hypertension, but I have had shunt surgery to relieve the high CSF (cerebrospinal fluid) pressure. The pressure is normal, and the question is why am I still in pain?

I'm looking for ANY information that would lead to the resolution of the pain I experience. I've been blessed with a loving family that supports me and cares deeply for me. *edit*
here is a link to a website my father and I constructed which has my full medical history

*edit*

Despite the burden of constant pain, I will never stop fighting and searching for an answer

God Bless,
medstudent99

Last edited by Chemar; 11-25-2012 at 07:36 AM. Reason: no linking for new members plus guidelines
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Unread 11-25-2012, 04:14 AM   #2
razzle51
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have you ever been checked for Chiari Malformation ?
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Unread 12-22-2012, 08:14 PM   #3
Barry Spencer
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I always give the same advice: gradually decrease your caffeine intake from all sources, dietary and medicinal, over a number of days.

BTW: Med students have the highest caffeine use prevalence of any group! Some studies I've seen of caffeine use among med students at various med schools found caffeine use prevalences of 98, 99, and 100 percent.
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Unread 01-23-2013, 07:12 PM   #4
Nina.G
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Have you tried steroids injections and Gabapentin?
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Unread 02-03-2013, 12:30 AM   #5
imuspee
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!OMG, it's almost like reading my own story!

Started out medically treating with diamox, proceeded to have ONSF to my right eye only to have my left eye done a month later, and yet the headaches continued. Two months later had my first shunt placed, LP shunt. Headaches decreased significantly but there were still days when I had those horrible ones yet.

Am currently on topamax & gabapentin which is doing well with the headaches most days. I have a great deal of other pain with OA, RA,.. have what they often refer to as a complicated medical history...just lucky I guess.

Sorry to hear you have this & I do hope you can get back to your medical training/education. Perhaps you could change the way some (in reality, many) docs think & treat us IIH patients. Think we all have stories where we have been treated less than kind at one time or another.
Peg

Hang in there! I pray it does get better for you!
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Unread 02-06-2013, 06:39 AM   #6
dds4life
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Default Headahe related to your bite and TMJ is overly under diagonsed

I am sorry to hear that you have had a chronic headache and no specialist has been able to pinpoint the problem. I am a Reconstructive dentist with many years of experience in treating TMJ disorder. I would suspect that your pain is coming from your TMJ. Depending where you are located, I strongly suggest seeing someone with extensive experience in TMJ.
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Unread 04-28-2013, 09:04 PM   #7
Squidge
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Quote:
Originally Posted by medstudent99 View Post
I am a med-student who has been suffering from 24/7 bilateral eye pain and frontal head pain for over 3 years. This constant, dull, soreness and sensation of pressure has become totally disabling and I've had to completely withdraw from school and almost all other activities. I have literally seen over 100 doctors all over the United States including Ophthalmologists, Neuro-Ophthalmologists, Neurologists, Neurosurgeons, NeuroRadiologists, and Cardiologists. I have taken a myriad of different prescription medications for the pain, but they only provide short-term 30% relief of the pain at best. I was diagnosed with Idiopathic Intracranial Hypertension, but I have had shunt surgery to relieve the high CSF (cerebrospinal fluid) pressure. The pressure is normal, and the question is why am I still in pain?

I'm looking for ANY information that would lead to the resolution of the pain I experience. I've been blessed with a loving family that supports me and cares deeply for me. *edit*
here is a link to a website my father and I constructed which has my full medical history

*edit*

Despite the burden of constant pain, I will never stop fighting and searching for an answer

God Bless,
medstudent99
Hi I was diagnosed with IIH 4 years ago. I had a vp shunt inserted and have had this revised many many times! My last icp reading in march this year was normal, however my headaches have been chronic and daily for the past year! My neuro surgeons referred me to a neurologist who has given me 39 injections of Botox. This was only done 2 weeks ago but so far there is some improvement, its now more like a background headache, although us still bad when I lie down or bend over. I've been told the second course in 12 weeks should work even better! IIH sufferers often end up with chronic migraine as well as the intracranial hypertension. I am very hopeful for the Botox to work, I'm glad it's been approved on the NHS in the uk x hope you're feeling better and that you get some relief x
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Unread 05-01-2013, 03:16 PM   #8
DevotedDad
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Default Explosion in people suffering similar symptoms

There has been an explosion of the amount of people who are suffering from similar symptoms as you have described.

Everyone is trying to rule out commonly referred to illness or factors that may cause these illnesses while ignoring the massive increase in chemical spraying, genetically modified food, and poisons that are being added to most of our food supply.

I can literally predict how bad my headache and pressure behind my eye will be by simply looking up in the sky and keeping a count on how many planes are chemtrailing in my neighborhood.

A lot of planes = a lot of headaches and eye pain.

If you want to find out what is happening to you, stop listening to the idiots who say: "That's a crazy conspiracy" as your head is pounding!

Quote:
Originally Posted by medstudent99 View Post
I am a med-student who has been suffering from 24/7 bilateral eye pain and frontal head pain for over 3 years. This constant, dull, soreness and sensation of pressure has become totally disabling and I've had to completely withdraw from school and almost all other activities. I have literally seen over 100 doctors all over the United States including Ophthalmologists, Neuro-Ophthalmologists, Neurologists, Neurosurgeons, NeuroRadiologists, and Cardiologists. I have taken a myriad of different prescription medications for the pain, but they only provide short-term 30% relief of the pain at best. I was diagnosed with Idiopathic Intracranial Hypertension, but I have had shunt surgery to relieve the high CSF (cerebrospinal fluid) pressure. The pressure is normal, and the question is why am I still in pain?

I'm looking for ANY information that would lead to the resolution of the pain I experience. I've been blessed with a loving family that supports me and cares deeply for me. *edit*
here is a link to a website my father and I constructed which has my full medical history

*edit*

Despite the burden of constant pain, I will never stop fighting and searching for an answer

God Bless,
medstudent99
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Unread 06-25-2013, 02:44 PM   #9
veggienft
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I'm a diet nut. I've cured a lot of my illnesses with diet changes. I've been on a modified paleo low carb diet for about 5 years. I've been experiencing the following sequences for about 3 years:

* Recurring right-side migraine headache
* Recurring right-side neck ache
* Sleep disturbance
* One bout of kidney stones
* Right ear ringing and "whooshing"
* Recurring bacterial ear infection
* Recurring blurred vision
* Recurring sinus aches and sinus infection
* Recurring nose bleeds

These symptoms responded to changes in posture. I stopped sleeping on my stomach, and I stopped slumping while lounging. The symptoms also responded to elimination of eggs, yellow corn and tomatoes, and to curtailment of coffee intake.

Prior to this week, I had blamed my condition on a combination of neuromyelitis optica (NMO) and thorassic outlet syndrome (TOS). Then I read Dr. Jack Kruse's blog entry about pseudotumor ceribri.

http://www.jackkruse.com/cpc-6-pseudotumor-cerebri/

Pseudotumor ceribri is another term for idiopathic intracranial hypertension (IIH). I was elated. One diagnosis explained all my symptoms.

But read Dr. Kruse's blog entry. Dr. Kruse explains that vitamin A is connected with IIH via its ability to affect the effects of blue light. Vitamin A is a "carotenoid". Carotenoids are a family of red and orange polyphenol dyes contained in foods. The body uses carotenoids to regulate the effects of blue light.

As shown some of my symptoms were caused by coffee, yellow corn, egg yolks and tomatoes. These foods all contain carotenoid dyes. Some of them contain small concentrations of pure vitamin A. All of them contain non- vitamin A carotenoid dyes.

I'm saying to try eliminating yellow corn, eggs, tomatoes and coffee. See what happens.

I should add that eliminating dairy also alleviated many of my symptoms. It just has no polyphenol association that I know of.
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Unread 08-08-2013, 03:54 PM   #10
unfortunate1
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Quote:
Originally Posted by medstudent99 View Post
I am a med-student who has been suffering from 24/7 bilateral eye pain and frontal head pain for over 3 years. This constant, dull, soreness and sensation of pressure has become totally disabling and I've had to completely withdraw from school and almost all other activities. I have literally seen over 100 doctors all over the United States including Ophthalmologists, Neuro-Ophthalmologists, Neurologists, Neurosurgeons, NeuroRadiologists, and Cardiologists. I have taken a myriad of different prescription medications for the pain, but they only provide short-term 30% relief of the pain at best. I was diagnosed with Idiopathic Intracranial Hypertension, but I have had shunt surgery to relieve the high CSF (cerebrospinal fluid) pressure. The pressure is normal, and the question is why am I still in pain?

I'm looking for ANY information that would lead to the resolution of the pain I experience. I've been blessed with a loving family that supports me and cares deeply for me. *edit*
here is a link to a website my father and I constructed which has my full medical history

*edit*

Despite the burden of constant pain, I will never stop fighting and searching for an answer

God Bless,
medstudent99
I am 19 years old and I found out I had chiari malformation when I was 16. Before that I suffered with migraines 24/7 also. And any pressure in my head limke sneezing or coughing made it worse. I had to be homeschooled my last two years of high school and it was hard to do any activities. Well I waited for a year to have my decompression surgery and my mistake was waiting so long. I am thankfull my daily migraines got better but my other symptoms got worse and I developed a syrinx. I am on disability now I have been diagnosed with depression, ataxia, sleep apnea, cervical dystonia, POTS, neuropathy, etc.... My Main problem is I have no balance. I have to have help on stairs and I fall a lot. I am now facing a spinal fusion surgery next month to maybe help some of my symptoms now. U say u have had a lot of tests but trust me so have I. It took a few to find the chiari. They found it by an MRI of the brain with contrast. It sounds li8ke this could be what ur diagnosed with. My advice to u is to have them search for this SOON. If This is ur problem u really need to have them take care of it. Don't be dumb like I was and wait around cause then even surgery wont help ur symptoms and they could even possibly worsen as mine did
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