Hi Carly,

Sorry you have this illness, but you are in a very supportive place with very knowledgeable women (and a few men!)---here is a helpful link:

http://www.uihealthcare.com/topics/medicaldepartments/ophthalmology/iih/treatment.html

I try to take control of this as much as I can: I have eliminated all chemicals from my food---aspartame is a known cause of this---and I eat a vegan, organic diet. (Not everyone can do this), but the weight loss has reduced the headaches a bit. Also, low sodium and a calorie-restricted approach has helped with the weight loss as well. There is some controversy about weight loss, as it works for some and not others.

Be sure to have a neuro and and opthamalogist and a regular doctor who monitors your blood work. He/She can work in conjunction with the other two.

Read back at old posts, as they are very helpful as well.

You will find that any and all questions you have will be met with warmth and care.

Angela

Thanks for the suggestions! :)

Carly, PTC or IIH (Idiopathic Intercranial Hypertension) affects different people differently. For some, medication reduces the symptoms and one can go into remission, but there is currently no cure for the disease. For some, like me, medication did not help and it led to a surgical procedure to bring my pressure down and reduce symptoms, a VP shunt to be specific. No one can put a timeframe on when you will feel better or see any results, it could take months or like many of us, years (and we're still strugling). Another helpful website is IHRFoundation.org that can go into more details and symptoms of the disease and even how to talk to others close to you about what you are going through. It will also offer assistance in finding doctors if you need to find an opthomologist or neurologist in your area. A lot of doctors do not know how to treat IH patients so educate yourself as much as possible, ask us questions, and then judge for yourself if you feel your current doctors are equipped to deal with your symptoms and progress compitently and effectively. The best thing right now is to do research and educate yourself so you know what to expect. If you need suggestions on what to ask your dr, post and we will be glad to give advice.

Hope

Hi Carly,
Sorry you had to get this diagnosis but you have found a good place for support and information.
Yes every patient is different with treatment and symptoms. The doctors call PTC or IH a chronic disease. They believe it is a life long illness, that is not to say that you won't go into remission but as of today we have no cure. I pray that we will change that soon.

Has your doc put you on Diamox? That is usually the first course of treatment. There are 2 types of Diamox, one is a fast acting and the other is a SL, slow release also called a sequel. Be sure you are on the sequal. My daughters doc did not know there was a difference. she spent six months o the wrong meds. Huge difference as soon as she was switched.
Do lots of research for yourself and ask lots of questions.
We are here to help if we can.
Sonya

Thanks for the heads up on the medicine. I'm not sure which one I'm on. I do know that my blurry vision episodes have been worse the last few days.I don't have papilledema yet, but I do have hazy episodes that are bothersome. I'm going to check my meds and make sure it's the sequel. That might be it.
I have noticed something improved-less all over twitching!
I don't know why, but the constant twitching has improved dramatically
since the meds. So, there's one praise! :)

Thanks for the encouragement and tips!
CarlyM