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

have you ever been checked for Chiari Malformation ?

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.

Have you tried steroids injections and Gabapentin?

!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!

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.

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

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!

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.

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

Medstudent99
 

Wow sorry your going through this if you ever find the awnser please let us know too its so crazy how all of our stories are so similar it having iih and having shunts and I dont know about you but I wad told I would feel so much better after.my shunt was.pit in not so much more crapier becouse to loose over 190lbs just laying on the couch if thats supposed to be the good life then what was the bad life becouse I dont know which one is better at tbis point all I know is I want my life back you know the one I used to have when I used to smile and laugh and go camping and hiking and play with my kids not this person I've become today that's always throwing up and laying on the couch and sleeping because I can't keep my eyes open who's always in pain because of the headache I don't know who that person is so med student 99 you find out what's going on get back to me because I would like to find the person who I was before before all this to my kids could have their mother back and maybe they can have a chance of having a childhood just maybe it won't be too late in the meantime take care you're in my prayers

Hi med student
 

I have a neighbor who suffers these kinds of headaches. Have you tried bio-feedback?. She is being trained in this and it seems to help some. ginnie:grouphug:

Lovelife,

Has something happened since February? Your posting style has changed markedly, and it's very difficult to read & understand your recent posts without capitalization or punctuation.

Doc

jraytn ask your head Dr about pachymeningitis
 

ask your Dr. about pachymeningitis

DX
 

In my experience, Pain Management Physicians can be good at diagnostics.

I just started with a new doctor who is a "Neurology Pain Management" doc. It is difficult to find a PMP who is also board-certified in Neurology (most are anesthesiologists), but they are out there.

What part of the country are you in? My new doc is out of UCLA; is there a teaching hospital near to where you live? That might be a good place to start.

By the way, this doctor entered the medical field because she is/was a migraine sufferer… It would be a real shame if you had to give up your chosen field of study and practice due to H/A pain, and I hope by now you have gotten some answers and been able to return to med school.

So important to have the right diagnosis from the get-go. It affects your treatment plan and everything else involved in your journey… It took decades in my case to get the right dx (I have a rare form of Thoracic Outlet Syndrome, which not only mimics the sx of many other pain syndromes but can be incredibly difficult to diagnose).

My dx was ultimately made clinically, by a vascular surgeon (which may be another way for you to go if you're still looking for answers, even though of course you want to avoid surgery at all costs).

Good luck to you and I hope you are feeling better.

Has anyone had difficulty getting diagnosed with IH because the only symptom not showing is papilledema? I have all of the other textbook classic symptoms and have recently undergone 2 spontaneous cranial csf leak repairs. I have seen 2 local neurologists and neither believes that IH is the underlying problem despite the fact that I have had headaches since I was 17 (now 43) that have never responded to any treatment and no history of previous sinus surgery or head trauma to account for the leak. I have dizziness, balance problems, difficulty thinking/remembering/concentrating, constant ringing in ears, pulsatile tinnitus, empty sella noted on recent MRI (as well as on an MRI in 2005 which was ignored although the MRI was ordered for headaches). I am just feeling broken and lost at this point because until the leak became obvious last July, I knew that something was causing some problems that I was having and considering the leak with no other known cause, I thought IH was the answer and with treatment, I may be able to find help. I have also had so many symptoms related to my pituitary having pressure on it that no doctor had ever been able to explain. I have thoroughly researched IH and noted in several medical publications that not everyone with IH has papilledema. I'm so discouraged that the 2 neurologists that I've seen refuse to acknowledge this. Can anyone help? I am several hours from Duke, Chapel Hill if anyone knows of a neuro that specialized in IH there.


Sent from my iPhone using Tapatalk

If you have not done so already, call Duke & ask them!


:hug:

I have a lot of issues but have no headaches at approaching 77. I've been taking OPC's mainly pycnogenol and now for 19 yrs grape seed extract. I still keep Pycnogenol at home as I make moisturizer cream with pycnogenol. But no headaches, no sinus issues, no allergies....had them all before 1995.

You might want to do some research on OPC's....these powerful antioxidants address so much in our bodies.....

This is one great site, I'm NOT endorsing the company, believe me, just like the way they "say it"....

www.grapeseedextract.com/
The OPC1 components in GSE are 50 times stronger than Vitamin E and 20 times stronger ... It strengthens blood vessels, improves skin, and aids in circulation.

Looking for second opinion
 

No recent posts on this topic but hoping someone might have info. I have a family member diagnosed with ideopathic pachymeningitis and I’m hoping for a second opinion. Online search looked like Mayo Clinic and ucsf have experience with the condition. Anyone have experience with either?

Welcome, Ann68!

If you haven't already found this out, you can search here on NeuroTalk for terms or phrases. For instance, when I entered "idiopathic pachymeningitis" in the search window, this is what came up:

https://www.neurotalk.org/search.php?searchid=3602277

And it is listed as a rare disease on the NORD Website:

Idiopathic hypertrophic pachymeningitis - NORD (National Organization for Rare Disorders)