Pseudotumor Cerebri Support Group

Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...

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So Frustrated....again

notsurewhat2puthere
notsurewhat2puthere
I am in the process of losing weight still...I just hit the 29 pound mark today and it seems like me being on diamox and topamax is not working again...my vision is getting worse again! Shouldn't it be getting better with weight loss?
mary1973
mary1973
Don't give up to discouragement, bravo and congrats on this huge accomplishment! I say its time to get up in the Dr.s cheerios over the return of symptoms in light of your commitment. Its about time us patients walk away with some answers, or an apology that they have no idea what the hell they are doing! Keep up you positiveness, hard work. You will prevail over all or most of your health.

Mary
notsurewhat2puthere
notsurewhat2puthere
My weightloss dr is staying on top of it thankfully
SeaSprite
SeaSprite
Weight loss will probably help, but not for sure. Your pressure could still be going up, not down, or giving you different symptoms.

That aside, losing weight is so healthy for so many reasons! I really admire your 30 lbs! I'm inspired by you. :)
deleted_user
deleted_user
That's a great achievement and even if it is not helping with the IIH, it will be good in so many other ways. That's what I'm telling myself too. I need to lose at least 60 more pounds myself. I am down 20 so far and also not seeing any changes in symptoms. But, I feel better, my clothes are fitting better, and I am sure it's good for my health, so I guess at least there is no downside here. That said, it is certainly frustrating, isn't it? Especially when our Dr's seem to tout the weight loss as the miracle cure for this.
HHugel
HHugel
I don't like it when drs throw that in there either. Congrats on the weight loss. I have lost 40 myself and 2 pant sizes. It's a good ego booster but didn't help the symptoms. My drs haven't mentioned weight loss recently so maybe they are getting it. I still have more to lose too but I am back down to where I was 5 yrs ago. I think I am going to try the flex belt. Anyone tried it yet? Since I can't do the couches or situps I thought maybe that would help give my mid section a nice workout.

Hope
mary1973
mary1973
Good job Kellie and Hope.
I have not heard of the belt, if it works,go for it. I'm doing the POTS workouts that strenghtens midsection and legs. I sit and flex my stomach like when your going number two, lol. I'm flexing legs too, I'm sore, when the heck does that pain stop?
notsurewhat2puthere
notsurewhat2puthere
My bariatric doctor is assured that I will no longer have IIH. I guess I just assumed she is right because she's seen someone else get rid of it with weightloss. I guess I'm terrified to let myself think that this is a long term thing honestly.:(