PseudoTumor Cerebri

Yes, I have also been diagnosed with pseudotumor cerebri. Very scary I was told if I lost weight my chances of it clearing up is greater. So i have definityl been on a up hill battle with this weight loss. They also mentioned that it is more common in young women who are heavy.

Yes, I was diagnosed with it about three years ago. I took acetazolamide for a year (and pretty much hated every day of it, since I had EVERY side effect that medication can cause). I've been off of it since, and working on my weight. It's been a back and forth struggle, but a year in therapy helped me start to manage my binges and emotional connection to food tremendously.

I think one of the reasons I'm so focused on getting healthy now is that I can feel a difference as I gain weight. I had lost thirty pounds after I was diagnosed, which was a major factor in getting off the medication. However, I gained it back and the headaches start to reappear. It scared me into looking for help dealing with my food and health issues. Even just the 12 pounds I've lost so far makes a noticeable difference in how I feel on a daily basis.

I had it back in the 90s. The doctor put me on Lasix and told me to lose a certain amount of weight...once I hit the mark he set, he took me off the Lasix for a month, checked me, and said everything was back to normal. I wish MFP had been around back then...it would have made my part of it a lot easier. ^_^

I was diagnosed with it a few years ago when I went in for a routine eye exam. I was on diamox and topomax and am now off of both because I hate what they did to me and how they effected me. I have not been back to either my eye doctor or my neurologist since I moved and I really need to because the migraines are still ever present in my daily life and I want to know if it is still present. It has given me more motivation in the recent months to push forward and to try to get my life on track to a healthy lifestyle.

I forgot Tyramine, which is found in aged and processed foods. We are still researching, just looking for input from others.

I have been diagnosed with IIH since Feb 2011.
I have a Vp shunt (since April 2011). Have had it replaced twice in 2012.
I am from New Zealand.

I am so tired of this illness making life so hard.
Determined to get healthier and take better care of myself.

Would love to know how you ladies are going now?

I have lost quite a lot of my vision due to IIH and really need to get my weight down to help prevent any further issues.

I am just so tired of feeling like crap.
I feel like crap then eat like crap.
Then it just continues as this negative spiral.

So fresh start today.
Food logged.
I can do this.

I was first diagnosed with PTC/IIH back in 1993 (when I was 11). I have been struggling with it ever since. Luckily there have been years where no medication has been needed, but I continue to get flare ups where LPs and medications are needed to get my symptoms back under control. I have chronic daily headaches from the PTC. I generally try to ignore most of my symptoms but I get scared and seek medical attention when my vision becomes impaired. I think the doctors have prescribed just about every medicine they can think of but unfortunately I seem to get all of the side effects and none of the benefits. I am currently down to just Diamox which I still have just about every listed side effect from. My neurologist is not comfortable with taking me off all medications though since the papilledema is still present. My neurologist does not feel I am a good candidate for a shunt but we have discussed optic nerve fenestration as a possibility if my vision deteriorates. This most recent flare up has been the longest lasting- I have been on medication over two years now. Luckily the symptoms are not as severe as I have had in the past.

Pretty much every doctor has stressed that I need to lose weight to get my PTC under control. I am not entirely convinced though because although I have been heavy my entire life I have not noticed gaining or losing weight to have had any impact on my flare ups. I have heard people saying that weight loss is not necessarily the answer to PTC and that it is an old school way of thinking. However, I have not seen the research to back that up. I figure that any weight I can lose will make me feel better in other aspects of my life even if it does not help with the PTC. I will certainly never regret losing weight! If by some miracle getting down to a healthy weight does indeed prevent more flare ups I will be ecstatic! After 20 years of PTC I am certainly not holding my breath though...

completley cutting out caffiene to help alleviate IH. Has anyone else heard this? I

Yes my bosses have told me this and I have. No caffeine for me since May. Smoking is also a contributing factor Ive been told. Smokeless for 1 year and 2 months

I never drank/used caffeine before and was told after my spinal tap/ epidural blood patch that I NEEDED to drink caffeine, so I have been, after doctors orders. They also suggested I limit my water intake, which sounded ridiculous to me... any thoughts?