Originally Posted by LadyLissy (Post 936857)

Hi everyone! I'm really happy to have found these boards. I've been dealing with this condition pretty much alone for months. It started 6 months ago when I had a migraine wake me up at 2 am. I'd had migraines before, so I thought no big deal. Well, it wouldn't go away.

Went to my pcp at 3 days, he gave me Maxalt. Did nothing. Went back at 7 days, he tried a shot. No help. He told me that at 10 days, I needed to be in the ER. Day 10, I went to the ER. They lectured me that my pcp should be handling this, not them. Grr! Anyway, they gave me a migraine cocktail of meds. No help, sent me home to see the neurologist a few days later. Neurologist suspects Pseudotumor Cerebri. Now, I'm not, and never have been, overweight. I'm in the healthy weight range for my height. 125lbs and 5'1". But he was telling me that I needed to lose weight to get rid of the pain. That annoyed me right off the bat.



He put me on Topamax, and gave me Imitrex to stop the headache. Neither worked. I had bad reactions to the Topamax, but I stayed on it for 2 months, hoping it would work for me. A week later, since I was still in pain, he decided on an LP. I went to his office for the procedure. He missed. 5 times. Oh, the agony. So he sends me in for the x-ray guided LP that night at the ER.

Sure enough, I got the low pressure headache from the 5 failed LP's that day, and 3 days later, when I sneezed, I went completely blind for about 5 minutes. So, we went back to the ER. That ER sent me by ambulance to another hospital for a blood patch. Back to normal migraine. Keep in mind that in all this time, nothing has relieved the headache for even an hour.

Months followed of neurologist doing nothing, and PCP offering all sorts of creative solutions. Massage, acupuncture, acupressure, aromatherapy... Peppermint helps, by the way! I finally got in to see a new neurologist, who sent me for an MRI. MRI came back clean, except for showing very high CSF levels.

So, it's back to the ER again for another LP. My opening pressure that day was 35. They gave me Diamox, which I'm handling even worse than the Topamax. If I stand up, I'm out of breath. Not fun! So tomorrow, I see a neuro-opthamologist to figure out what to do about the Diamox side effects, and where to go from here.

It's been a very frustrating journey so far. My family is all in different states, and my fiance tries to understand, but being a headache related issue... It's not so noticeable from the outside. I just need some people who understand what I'm going through, and maybe have some ideas I can present tomorrow about the future treatment.

I've heard about shunt surgery. If any of you have had it, how far into your treatment did you have to wait until the doctors suggested it? I've been 6 solid months with a constant migraine right now. I'm desperate! Sorry for the long post, and thanks everyone!

Originally Posted by LadyLissy (Post 936857)

Hi everyone! I'm really happy to have found these boards. I've been dealing with this condition pretty much alone for months. It started 6 months ago when I had a migraine wake me up at 2 am. I'd had migraines before, so I thought no big deal. Well, it wouldn't go away.

Went to my pcp at 3 days, he gave me Maxalt. Did nothing. Went back at 7 days, he tried a shot. No help. He told me that at 10 days, I needed to be in the ER. Day 10, I went to the ER. They lectured me that my pcp should be handling this, not them. Grr! Anyway, they gave me a migraine cocktail of meds. No help, sent me home to see the neurologist a few days later. Neurologist suspects Pseudotumor Cerebri. Now, I'm not, and never have been, overweight. I'm in the healthy weight range for my height. 125lbs and 5'1". But he was telling me that I needed to lose weight to get rid of the pain. That annoyed me right off the bat.

He put me on Topamax, and gave me Imitrex to stop the headache. Neither worked. I had bad reactions to the Topamax, but I stayed on it for 2 months, hoping it would work for me. A week later, since I was still in pain, he decided on an LP. I went to his office for the procedure. He missed. 5 times. Oh, the agony. So he sends me in for the x-ray guided LP that night at the ER.

Sure enough, I got the low pressure headache from the 5 failed LP's that day, and 3 days later, when I sneezed, I went completely blind for about 5 minutes. So, we went back to the ER. That ER sent me by ambulance to another hospital for a blood patch. Back to normal migraine. Keep in mind that in all this time, nothing has relieved the headache for even an hour.

Months followed of neurologist doing nothing, and PCP offering all sorts of creative solutions. Massage, acupuncture, acupressure, aromatherapy... Peppermint helps, by the way! I finally got in to see a new neurologist, who sent me for an MRI. MRI came back clean, except for showing very high CSF levels.

So, it's back to the ER again for another LP. My opening pressure that day was 35. They gave me Diamox, which I'm handling even worse than the Topamax. If I stand up, I'm out of breath. Not fun! So tomorrow, I see a neuro-opthamologist to figure out what to do about the Diamox side effects, and where to go from here.

It's been a very frustrating journey so far. My family is all in different states, and my fiance tries to understand, but being a headache related issue... It's not so noticeable from the outside. I just need some people who understand what I'm going through, and maybe have some ideas I can present tomorrow about the future treatment.

I've heard about shunt surgery. If any of you have had it, how far into your treatment did you have to wait until the doctors suggested it? I've been 6 solid months with a constant migraine right now. I'm desperate! Sorry for the long post, and thanks everyone!