Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
hello, i am new here and was just wondering if anyone can tell their stories of how long it took to find thr right meds, and how many lps u have had? Im just wondering how long of a road i will be on until i feel beter. thanks so much any advice or stories will help. feel free to ask any questions.
also i was wondering what everyones opening pressure was with your first lp. mine was 38? doc said normal was 20?(idk if its in mg or something else)
also i was wondering what everyones opening pressure was with your first lp. mine was 38? doc said normal was 20?(idk if its in mg or something else)
The thing about IIH is altho we all have the same basic problems there are so many variables, one can never say it is this.
How long before any one was diagnosed? All different.
I was treated for the wrong illness for a year before they realised I had IIH.
I would also say, I have had it for years, just 3 years ago , I lost all control of it.
Lps, hmm. We have a lot of different schools of thought here about that, or I should say , the drs do.
Some use it as a therapeutic aid, my neuro , will only do it to see what the " numbers" are. I think, we should have as few as possible.There are very high risks associated with it.
My first op was 49, the last one, with a VP shunt, 34.
By the way 20, is not normal. It should be 11-13, but for us, anything over 20 is the starting mark. This is the point where they start measuring.
For me , personally, I have tried all the meds, have a Vp shunt, have had very bad paps, (Papilloedema, swollen optic nerves) and they have also healed and come back. I still have daily headaches, vision, balence problems, but over all, feel better than I have done.
It s a long twisting, unsure road, this illness but there are success stories, stories of remission, of getting some quality of life back.
Stick around, read old posts, , ask questions. We are very supportive of one another and share all our news and info. I hope you will find your time with us, a good one. Cath.
This seems to carve a different path for each of us. My first round of this was ten years ago, I had one lp and took 2000mg of Diamox for one year, and then was in remission for 10 years, relatively symptom free. Now I am fighting this again, have been since July. This time I can not tolerate Diamox, was having severe low blood pressure and pulse and the side effects were horrible. I don't know what changed in my body, but am searching for a different treatment this time.
Hang in there, and I hope you find a treatment that works for you.
(We have a thread called Our Stories...please add yours!)