Ugh you guys. Four years ago I was wicked sick and it turns out that chronic illness, which was in remission, is back. I feel so awful and its hard to explain. Plus the specialist I was seeing is apparently no longer seeing patients and now I have to go see uber specialist in Boston.
I am irritated at myself because although no one really knows what causes the disease, women with obesity are pretty much the population that gets this disorder. I lost thirty pounds which sent the disease into remission. But over the last three years I have slowly gained back 20 lbs and now I have it again. It causes terrible, debilitating headaches, blurred vision, and I have periods of confusion and disorientation.
I seriously just hate myself right now. I need hair pats.
That sounds horrible, I'm so sorry. Does it come in relation to your period? I have a friend who just started experiencing similar things at the beginning of her period... actually cannot speak sometimes. The first time they thought she was having a stroke.
Nope not for me I haven't had a period in years with my Mirena. Although there is some research that suggests the condition is exacerbated by hormonal birth control. It's pseudo tumor which is also known as idiopathic intracranial hypertension.
Pseudotumor? I'm sorry your headaches have returned, that is such a frustrating condition.
Yup!! Do you have this? I had never heard of it when I was originally diagnosed four years ago.
Thank you all so much for the kind words. I really appreciate it.
I do not, but I've seen many patients with it and I cannot imagine being in your/their position. I mostly see them when they fail conservative treatment and have surgical intervention. I hope your new specialist has some great ideas for treatment.
Yup!! Do you have this? I had never heard of it when I was originally diagnosed four years ago.
Thank you all so much for the kind words. I really appreciate it.
I do not, but I've seen many patients with it and I cannot imagine being in your/their position. I mostly see them when they fail conservative treatment and have surgical intervention. I hope your new specialist has some great ideas for treatment.
Ugh I really hope I don't get that bad. Last time I was well controlled on diamox and I just picked up my prescription. Are you involved with shunting or something else ? Feel free to pm me if you don't feel comfortable sharing. I will hopefully get a consult with the neuro-opth soon. Today I just saw my pcp and a regular opthalmologist who were comfortable diagnosing me with my symptoms and the papillodema. I am hoping that the neuro-opth doesn't want me to get a lumbar puncture bc that was awful last time as I had a leak and a spinal headache for a week until I got a blood patch.
I do not, but I've seen many patients with it and I cannot imagine being in your/their position. I mostly see them when they fail conservative treatment and have surgical intervention. I hope your new specialist has some great ideas for treatment.
Ugh I really hope I don't get that bad. Last time I was well controlled on diamox and I just picked up my prescription. Are you involved with shunting or something else ? Feel free to pm me if you don't feel comfortable sharing. I will hopefully get a consult with the neuro-opth soon. Today I just saw my pcp and a regular opthalmologist who were comfortable diagnosing me with my symptoms and the papillodema. I am hoping that the neuro-opth doesn't want me to get a lumbar puncture bc that was awful last time as I had a leak and a spinal headache for a week until I got a blood patch.