I cant take the diamox due to kidney problems so i am on 160 mg of lasix and for vision issues methozolomide 50 mg. Other than my kidney issues i already had before dx no real side effects.

i used to take methazolamide 200mg a day took almost a yr for it to work but stopped taking it when it went on back order in april and never went to get another refill

I used to be on a combo of Lasix and acetazolamide (diamox). I think it worked better than Diamox alone, but it tanked my potassium levels. My doctor discontinued the Lasix. Now I'm just on Diamox. According to my neurologist my next alternative to Diamox is a shunt.

The only other medicine I know of that is recommended for IIH is topomax. If you cannot tolerate lasix, diamox, or topomax and you have papilledema or severe neurological symptoms then a shunt is the only other alternative at this time to help alleviate your symptoms and save your eyesight. I know they can place holes in your eyes (fenestration) but I am shunted and they never mentioned that procedure to me. Hope that info helps some. I know many people that the higher doses of diamox caused some pretty intolerable side effects so they had to quit taking it.

I went through the same thing with Diamox. I slept 20hrs a day and could not function. The doctor put me on Lasix and K+ but the eyes got extremely blurry. Then I was switched to Neptazane and I still have the blurriness. So I dont know what the answer is, sorry.

Hi there,

For those on Shunts or thinking about Shunts, please checkout this video of a patient who went with a stint over shunt. Her situation might be different from you guys, but you never know.

Stint for PTC is somewhat new procedure at Johns Hopkins.
http://www.hopkinsmedicine.org/neurology_neurosurgery/news/videos/moghekar_pseudotumor_ashley.html

Good Luck

I am on diamox 3000mg and to be honest i have truly given up.....my vision has improved a 100% but i still have horrible headaches.....i was diagnosed when i was 6 months pregnant...all the dr's said it would go away when i had my daughter BUT GUESS WHAT....(IT DIDN'T)....i am in constant pain but no one understands but me i am a mother of six now and i hate my life......i cant work because i would have too many absentees with this condition...(DUE TO ALL THE DR'S VISITS)....i cant get ssi because i am not blind, OR AT RISK OF BECOMING BLIND ANYMORE..... i feel useless to myself and to my family..... my life sucks........ i wasn't supposed to be sick ..... i have a great NEUROLOGIST.... who thank god doesn't believe in constant spinal taps , so i don't have to deal with that pain.....i'm tired all the time in constant pain all the time i cant work and cant collect ssi i so how do i show my children how to be productive when this condition is holding me back......i grew up with a mother who has fibromyalgia and i couldn't stand her being sick all the time and now LOOK what am i showing my kids AND MY HUSBAND.....shit I HAVE BECOME the very same thing i hate my fucking LIFE

Hi BriBri29,

I so sorry to hear about your pain. I posted a video regarding a patient with horrible headaches that decided to go with a Stent to address their pain.

You said you had a good doctor, have you guys talked about possiblities of a stent or shunt?

I have attached 2 videos on patients who experienced crippling headaches and both addressed them with their doctors in their own ways. Hopefully you and your doctor can talk about these 2 video and some ideas.

http://www.hopkinsmedicine.org/neurology_neurosurgery/news/videos/moghekar_pseudotumor_ashley.html

http://www.youtube.com/watch?v=p3Nlqg9BzPo

Good luck
David

My mom is on diamox 2000mg and got a very severe blurry vision since she has been put on him, for 6 weeks now. However, her NO doesnt believe diamox can cause that, so we are left with no alternative to treat her paps

Update... so I switched doctors. When I shared the extent of the side effects (exhaustion, sleepiness, short term memory loss, irritability, very emotional) of Diamox with this doctor, he immediately cut the dosage back to 250 mg a day. Looks like I'm very sensitive to the drug. And since then I've improved. I've lost a total of about 30 lbs and working to lose another 10. I'm sure my weight loss has contributed to my progress the most but I feel so much better with the lower dosage. In fact, I'm taking 125 mg a day now. Big difference from the 1500 mg. Not suggesting that anyone stop taking their meds. I'm just glad that I questioned the side effects and made the choice to get another opinion. My first dr refused to listen and basically told me I didn't know what I was talking about. Her response was to prescribe a different med with same side effects as Diamox plus the threat of seizures. Nope. Wasn't taking that one and decided to find another dr. Took time but glad I did.

The lesson I learned is to make sure the dr listens to me and understands or find one who will..

I totally feel you about the diamox! I was on 2000mg and couldn't function at a waking human. I pleaded with my doctors and they moved me down to 1000mg, and I just work with my Opthamologist to closely watch if my eyes. My vision of fine but my headaches are still there. I'm actually going through the process of getting the gastric sleeve. I'm 5'7" and 227 currently (245 when I was diagnosed). The bariatric surgeon I met with said there is no better reason to get the sleeve or bypass then pseudotumor, since decreasing weight is linked with decreasing / removing all symptoms. Maybe something to consider? Hang in there!