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The new "guess" is iih (pseudotumor cerebri)
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The new "guess" is iih (pseudotumor cerebri)



My issue has been going on for almost three years now.
I am on this forum because my latest neurologist said he thinks I MAY have IIH or/ Pseudotumor Cerebri.


HISTORY : I remember being about 11-12 on my grandmother's couch every other night because I had horrible headaches. I would have to put a rag on my head in the dark.
                I had my appendix removed.
                I had a compound fracture, to my left arm. Almost lost it and had to be medivaced ( sorry for the spelling ) to the hospital.
                I have really low vitamin D & vitamin B12 deficiencies but not pernicious anemia.


Around 2004, I stopped having headaches... THEN about three years almost ago...I started having tingling in my cheeks. Went to my regular DR and had blood tests done.
Only found defiencies. I then went to my first neurologist. Had a neck/head MRI with contrast. Nothing abnormal. Then as the weeks went on, I had tingling in my fingers, neck and back pain.
I'd throw up, felt off balance, and went to the er about 19 times. I had abnormal antibodies in one of my titer blood tests but then that was ruled out.
Saw an infectious disease dr, spine doctor, rheumetologist, three neurologist. All found nothing.The day I fainted they admitted me at the hospital. I had a LP which came
back normal. I had a whole spine MRI which they found nothing.


From then on, I have seen 3 neurologist. The first suggest a CSF Leak ( low pressure ) not because my eyes showed anything but off of symptoms. They never found a leak.
Its 3 years later and im still in pain every single day. My latest neurologist/opthamologist suggested since im overweight and because I now see ( snow vision ) that it may be IIH.
I have no papilledema ( spelling, sorry ).  I am supposed to take meds to help for migraine WHICH I just got after ALL these years. None of them really suspect typical migraines tho.


Things I thought I could have, CSF LEAK, Brain Sag, Lymes Disease, Vinous Sinus Thrombosis, Chiari Malformation? Anyway, I have really bad lower back pain, neck pain, random pressure in
my ears and head. TIngling everywhere but mostly on the scalp, feeling off balance, facial pain, and more.


Tags: chiari malformation, iih, pseduotumor cerebri, Migraine, Headache, Pain
4 Comments Post a Comment
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620923_tn?1405964489

  Hi....I haven't seen u on the site in a while....was the Chiari ruled out completely? IIH or PTC which ever one u want to call it, is a related condition to chiari...and  depending if ur Chiari is congenital or acquired would explain a lot, if acquired it could be the result of the PTC.

And PTC can develop when u have a CSF obstruction from Chiari...either way u could have both.

I would suggest u see a Chiari specialist for either issue....I hope u got to the bottom of this soon.
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1756321_tn?1377771734
Have you corrected your vitamin B12 and vitamin D?  Vitamin B12 deficiency causes many symptoms without affecting the size of the blood cells. Nerve damage may be permanent if not corrected within 6 months of symptom onset. Vitamin B12 deficiency appear in the cerebrospinal fluid when serum levels fall below 550 pg/ml (400pmol/L).  Vitamin D deficiency is a well noted cause of chronic bone pain.  Vitamin D council recommend 50 - 80ng/mL (125 - 200nmol/L) year round.

Are you taking any medication to lower stomach acid?  Current warning is magnesium deficiency (but lowering stomach acid causes many deficiencies as you need stomach acid to absorb nutrients) and magnesium deficiency is another cause of chronic pain (increases substance P - P is for pain!).  Magnesium deficiency is also a common cause of migranes (migraines).
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1166456_tn?1310011517
My newest Neuro who sugget IIH gave me Amitriptyline.
I looked it up and its used for depression? I'm annoyed, because
my old neuro prescribed me topamax which seems more relevant?

Has anyone ever heard of someone usingAmitriptylie?

I have not checked my vitamin levels for two years, and my new
PC doctor says that I'll have to pay because its not covered..sigh
my insurance changed and I had to switch all my doctors :(*
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4084741_tn?1350812085
I used Amitriptyline for a month in 2011 and I HATED it!

It made my eyes fluttered so badly I cldn't see plus my light sensitivity (sp?) got 10 times worse.

If you have to try that med, watch for symptoms in your eyes. At the first sign of problems, stop taking it and call your dr asap. It took a few days for it to leave my system and return my eyes to my normal/abnormal situation, lol.
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