Headaches, headaches

[Guest guest]

Dear Friends,

I am one of those stuck in a rut of trying to find treatment and answers for a

lifelong problem of dealing with PTC, Pseudo Tumor Cerebri, also known as

Intracranial Hypertension, when there is too much spinal fluid made to be

absorbed, so it sits on the brain and creates high pressure headaches.

I have been shunted in one form or another since 1971, starting with an LP

shunt, then switching to VP shunt in 2003.

After decompression, revision, and TC surgery, the headaches remain.

I am at a loss for what to do next to try to alleviate these eadaches.

Diuretics don't work for me. I am allergic to sulfa, so Diamox is out as a

treatment.

Losing weight has been a battle. I think there are pituitary issues going on. I

am hypothyroid,, and am on Synthroid. Those levels have been tested.

Dr B says losing weight would help with the PTC. Ok. Yeah. To be honest, in

the past, I did lose a lot of weight and that didn't make a darn bit of

difference with the headaches.

I feel like with my case of PTC, TCI is sort of stumped with me. Shunts are

problematic, and [it seems to me] they don't like to work with them anymore. We

are difficult patients to treat. I don't get many answers, and feel lost and

pushed back.

I don't know what to do next. I took a chance with the TC surgery,

hoping that amoung taking care of other issues that it was successful for (I

did get relief from bladder symptoms) that I would have relief from the high

pressure headaches. I knew going into it that getting rid of the high pressure

headaches would be a crapshoot. But after hearing of other patients being able

to have their shunts disconnected, I had a glimmer of hope.

So, I guess what I am asking after all this explanation, anywone that has been

to TCI recently, if you have PTC, what has been suggested as treatment? Was it

anything more than Diamox?

And, I could even be on the wrong track on what is causing these headaches. A

neurosurgeon that I saw in Buffalo, NY, that is very knowledgable about SM (Dr

Lee Guterman), said that my headaches could be caused by my SM, or even the

herniated disc at C 5-6. Any thoughts anyone who has had experience with either

of these issues?

Thanks. I am hoping to get some direction going to this year, do more than just

take pain pills for these headaches. I would like this year to be the year of

some decisive action.

Peace be with us all,

Betsy P, Erie PA

ACM, PTC, SM, TC

herniated C5-6

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