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

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

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

ask your Dr. about pachymeningitis

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.


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

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.

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)