This LP worked for a while because the headaches were gone. I even quit taking the diamox for a while. Then a few years later I hurt my tail bone in a fall. The next day I sneezed and I guess becuase the spine was already hurt from my fall, (I'm guessing here), I got whiplash. Well, it wasn't much after that the PTC was back with a vengance. I went back to my family doctor, and knowing he didn't know much about PTC I talked him out of sending me to a Neurologist and just prescribing the diamox. (Boy was I stupid! But in my defense, I still didn't understand how serious this disease was!) Well the doc put me on Diamox 500 mg. That was about five years ago.

Over the past two years my headaches have begun to get worse, but I also lessened the dosage of diamox to once a day. I can only say I was totally ignorant to this disease and since I had lost a lot of weight, I thought I was safe. I went to my doctor and complained about headaches and neckaches but he thought I might have arthritis from the whiplash. (Like I said, he didn't know anything about PTC.)

Well I saw the Neurologist before Christmas and he put me on a drug called Inderal which is really a medicine for high blood presure (mine is low) but it also prevents migraines. Well, it has helped with the migraines but I still have the burning headaches and stiff neck, etc so he has decided to do another LP. I asked him why and he is concerned the pressure is up high from the PTC. He did a CT Scan first and that came out normal.

That brings me up to today. I am supposed to have the LP this week but have not heard back from the doctor. Meanwhile, I decided that since I know so little about this disease I should look up some information on the internet. That is how I came to find out how serious a condition it really is. In fact I think I know more about this disease now than I have in the last 12 years!

The first thing I did was join the support group and mailing list. It has been a blessing to me. I discovered I was not going crazy, nor was I a hypocondriac. Everything I am going through is real and a part of PTC. That is why I have created this page. It is to help others find the links I found and hopefully find some answers as well.

I am hoping to see a neuro-opthomalogist soon. I will keep this site updated on all that is happening.

UPDATE 3/10/99 Well, I finally had my LP on March 12. It was not a good one. I ended up going in on Valentines day for a bloodpatch. That helped with the headache. For the past three weeks I have had no problems with pressure or headaches. It's been wonderful. My doctor wants to see me in six months for a recheck.

Yesterday I saw the Neuro-opthamologist. He had good news for me. Right now my eyes look really good. There is no pressure on them and they have no signs of damage. He suggested I get back in touch with my Neurologist in six months as planned and see how things are going. So, that is what I am going to do.

I hope this helps. Please feel free to email me if you have any questions.

September 29, 1999I ended up seeing a neursurgeon because I was feeling so bad. He did a retrograde venousgram and it showed my pressure was so high that I was in danger of going blind. He recommended weight loss surgery. Because of that I have started a journal regarding my weight loss. To read what is happening please go to my journal to read my entries.

July 12, 2000 I feel great! I don't have headaches anymore and think my PTC may be gone. I will be having another retrograde venousgram and an MRI in August to confirm it. I will update when I know more.