It basically means that I either make too much cerebral fluid or I don't absorb it fast enough. Most people are given a diuretic that causes more problems than the original disease. My symptoms aren't too bad, but I have some minor swelling behind my eyes. The neurologist wants to go straight to having a shunt put in my head that drains into my stomach. I think that's nuts when my symptoms aren't even that bad. Some people lose weight and go into remission.
I'm hoping to find someone else that has cured or put this into remission by diet alone without the medication or surgery. It feels like a long shot since most people miss the boat on linking up their symptoms and tying it to diet.
I'd like to go a natural route and try natural diuretics, paleo diet, and weight loss first (I'm 5'5 woman and weight 240 after losing 10 lbs). I think everyone I know will think I'm crazy for not following doctors orders.
Acetazolamide (Diamox) is the drug commonly used to treat pseudotumor cerebri. It causes the body, through the kidneys, to shed excess water. Most doctors treat conservatively first, surgery should be a last resort. Try the med or another diuretic, try to lose weight, and see if that helps. If not, then maybe you'll need to have the shunt.
I'm speaking here as a pharmacist but one of my students in the pharmacy were I used to work developed this condition. She did lose some weight and the condition cleared up. As I recall, it took a few months to see improvement. Hoping this helps you.
I have it too so I literally share your pain. I'd be very hesitant to go and have the shunt, I should be a last resort. Try the meds - they helped me but I couldn't handle the side effects after a few months :( they recommend 5% weightloss and I've lost 12 and no real change :(. Do lots of googling and find some of the online forums
I also have IIH. Mine presents mainly through vision problems. I've had two flareups, both controlled by Diamox. The first flareup was the hardest because I didn't know what was going on and was put on a very high dose of Diamox right away. Yeah The symptoms of Diamox suck ass. However I got better (never completely because I stopped taking Dianox as quickly as possible and I never lost weight). My next flareup, I was just on Topiramate (Topamax), which is basically Diamox Light, and it did absolutely nothing but make me feel worse. When I was switched back to Diamox (at my own insistance since I knew it worked for me), I was put on a much more gradual increase (500mg-750mg-1000mg daily) and now I have very few of the side effect and even fewer of IIH symptoms. I'm also losing weight (10% down thanks to Weight Watchers). I would recommend trying gradual meds and diet combined but maybe ask your doctor about spinal taps as treatment rather than a shunt. One IIH patient I know hasn't had luck with finding meds yet, but gets a spinal tap every 3 months which helps keep her functional. Not an ideal solution but something to consider.
I think the main trick with this disorder is not thinking of it as something that will go away. It helps me to realize that IIH will probably be waiting for me if I ever get super heavy again. Keeps me motivated for the diet and meds.
Hello girls, just want to tell you I was recently diagnose, and like you at first I was confuse and afraid, it was something new for me, but I refuse to give up, I went blind for 2 days and it was very, very,scary, some doctors told me there was no cure, I was going to be blind for life, I was depressed, and sooooo afraidddd. But let me start telling you first that there is a God that love us and He has the final said so, second don't give up, there are good doctors willing to listen and treat you like a human, God put not just one doctor on my side but a group of different doctors that now are helping me, Neurologist, Endocrinologist, Ophthalmologist,General Doc & Gynecologist together. Couple of then had told me, there is cure but is in my hands, they just will help to control the fluid with medication, but I can do it too if I learn, I will have to do anything and everything possible to get out of this, is a commitment for life, "PALEO" loose weight eat healthy and change your habits, I had a lumbar puncture, I am thankful I found a great team of doctors that are helping me, guiding me and taking me by the hand to make it, I know is a hard work, I have lost 40lbs and I know I have 60 more to go, I was taking 4 Topiromate pills a day I am on 1 now, if you need support and help, you are welcome to contact me, I can encourage you what I have done, is not easy but it is possible, I am also 5.5 and I was 265 lbs. I feel good but I will feel great till I can say I out of this completely and it has passed years without no signs of that diagnose one day a doctor gave me and I know this will come to pass, so girls, don't give up. I know you also can do it.