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!

LadyLissy,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

There are some dear friends in the following forum that will be able to ask you in your request.

Hydrocephalus (Pseudotumor Cerebri):
http://neurotalk.psychcentral.com/forum14.html

Please keep us up to date on your condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

WELCOME to NT!

You've found a fantastic place for support and understanding!
Make yourself right at home! People are easy to talk to and the atmosphere is down-to-earth. Poke about all the different forums and post anywhere you'd like.
There's always a friend around every corner

Just holler if you have any questions or need help in finding your way around!

It's great to have you!

Caring,
Rae

Omg this brings me tears!!!! I've been to multiple hospitals, I've had 5 LP's Multiple Ct scans, MRI , was in the hospital for 8 days because of this, first day in ER they tried a Spinal Tap nd missed about 5 times ouch! So I had to wait until the next day my pressure level was at 35 , I still had headaches, they did another the next day OUCH! This one was higher I was at 42 soon thtat was done they put me on Diamox I was takin 1500mg a day, it had me sick but also using the bathroom (pee) Alot !!! The 3rd day being on Diamox it was quite difficult to stand up , I was very dizzy ,couldn't breathe, so they lowere the dosage , 500mg a day, the 4th day of Diamox they did another Lp nd it was 7% it was a whole lot of sticking goin on but when you're in so much pain you'll do anything to get rid of it, left the the hospital work for about 3weeks straight started gettin sick again went back in I had 52% wow! That was the highest! So the up my dosage to 1000mg doin good so far I've even lost 20 pounds like they told me, I go to every Nero-opthamologist appointment because I fear of losing my sight ! I have swelling in the back of my eyes but my vision is fine! I'm so scared because I can't get a shunt put in my brain my vessels are too small so it's like what's next! The spine shunt my Dr is scared of that procedure for me as well! But I'm doin good so far hopefully it doesn't come back even tho I kno it will ! I've been dealing with this since Feb 7 2013 ! I pray nd pray everyday! Hopefully this 1000mg work because I'm not even sick from it either, come on Diamox you can do it!! I have ptc, but Ptc don't have me!

My husband had bad headaches off and on for about 1 year. Thought it was sinuses, stress, etc.. Finally PCP said you've had these for some time lets do a ct. His ventricles were enlarged and We saw a neurosurgeon in the next few days, he said he needed surgery and had it by the end of the week. He now has a VP shunt. Did fine for approx 2 months, then headaches returned with a boat load of other problems such as: short term memory loss, trouble concentrating, and most recent possible seizures (absence). We see a Neurologist on Tuesday to see what he says. Lots of people have shunts and do great! no problems at all. This has been a great place for support from people who know what your going thru! Good Luck and keep us posted!

Fighting Ptc,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please, just let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

I totally feel your pain. for months no one could figure it out. and when you try to describe the headaches to someone that doesn't have them they just think we're being babies. Weren't those the WORST endless headaches you've ever had in your life??

I'm in the same boat with the Diamox side effects they are awful. But if the LP works and it gets rid of the PTC symptoms I guess it's better than that? I had complications after my LP but I had the blood patch and I've been ok since. They had me off the Diamox for a couple of weeks and I'll tell you I was ok at first and then I started to feel that eye pressure again so in the meantime if you can handle it, well even if you can't, do NOT stop your meds. I learned this the hard way.

Good luck, and I hope everything works out. Keep us posted about the shunt. I only just started reading about that so I'm curious also. If we get that done does that mean we can stop the meds or do we have to be on them anyway?

I so sorry you are going through all of this. I took those same meds with the awful experiences of the side effects. I understand how hard it is for others to understand too as my husband was having problems in this area.
He is very helpful now though. It takes some getting used to.
My eye doctor found by a routine eye exam that I had a problem and sent me to a neurologist who saw the same thing. Pseudotumor. She sent me immediately to get a fluoroscopy which showed my CSF not so bad, thus the meds were administered and Neurosurgeon visits began. After 6 months of that I was sent for another fluoroscopy which showed very high CSF, thus emergency eye surgery then the VP Shunt placement on 5/1/12.

While the shunt has helped it has not been without its own problems too. In February I had to have a spinal tap, due to headaches were back, which indicated my CFS was still too high. Easy fix was for my neurosurgeon to adjust it. Since then things were going well until 3 weeks ago when my vision changed. This was after having a sudden severe headache that put me in bed for 24 hours. I had a fluoroscopy that showed my CFS at "borderline" range so they are wanting me to go to a new neurologist. I now looking for someone who can help me to deal with this new situation.