Reviewer: WazUp247, 25-34 on Treatment for 1 to 6 months (Patient)

Comment:
I've been diagnosed with IIH. I've been on this medication for over a month now and I absolutely HATE it! I've been begging my doctor to let me stop taking it. I have tingling in my feel, hands, back, and lips. I drink a lot of water and still the dry mouth is bad. I have massive migraines that last days, and I live with a headache 24/7. I'm tired and moody all the time. My tastes ... Show Full Comment

Comment:
I've been diagnosed with IIH. I've been on this medication for over a month now and I absolutely HATE it! I've been begging my doctor to let me stop taking it. I have tingling in my feel, hands, back, and lips. I drink a lot of water and still the dry mouth is bad. I have massive migraines that last days, and I live with a headache 24/7. I'm tired and moody all the time. My tastes buds are shot, nothing tastes good. I have little to no hunger and when I try to see it just makes me nauseous. I have chills hot one minutes, freezing cold the next. I started taking it because of my blurred vision and I see no change! I try to stand or walk and I get dizzy and light headed. I also have ringing in my ears are random times. Surgery would be better than this! This isn't living!!! I can't even live my house without my husband, I'm scared I'll get dizzy or my vision will get blurred while driving or walking around the block.
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Reviewer: JessicaC., 19-24 Female on Treatment for less than 1 month (Patient)

Comment:
I had pseudotumor Cerebri 3 years ago and then went on diamox for a year and everything was fine 9 months later it came back i am now back on the medication and I'm having worse side effects then before.i only take 250 mg at night and 125 in the morning because the side effects are so bad, i had the increase in urine the tinge in m hands feet and face, headaches after taking the medication and ... Show Full Comment

Comment:
I had pseudotumor Cerebri 3 years ago and then went on diamox for a year and everything was fine 9 months later it came back i am now back on the medication and I'm having worse side effects then before.i only take 250 mg at night and 125 in the morning because the side effects are so bad, i had the increase in urine the tinge in m hands feet and face, headaches after taking the medication and I'm always tried, and metal taste when drinking carbonated drinks, the last time i was on it it make me anemic. now when i take the 250 at night after going to sleep i wake up in the middle of the night and feel like i have no control over my arms and legs its very scary. I've tried to switch the different medications but this ones the best, and I've done the lumbar punctures and the most recent one i had landed me in the hospital for 2 days. I also don't fit the criteria for this issue, I'm 5'1 and 120 pounds and healthy so my doctors are now sending me to john Hopkins hospital in baltimore Maryland to see a specialist, hopefully i come home with answers.
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Reviewer: kerryo, 45-54 Female on Treatment for 10 years or more (Patient)

Comment:
This condition is no longer referred to by the sad name of Psueudotumor please change to the correct medical term....IDOPATHIC INTRACRANIAL HYPERTENSION... thanks. It has been absolutely horrible. I have been on this drug for over ten years. I got IIH from Lupus and I do not believe this is a disease caused by weight..as the british say, there is no proof...weight is only a symptom of the overe ... Show Full Comment

Comment:
This condition is no longer referred to by the sad name of Psueudotumor please change to the correct medical term....IDOPATHIC INTRACRANIAL HYPERTENSION... thanks. It has been absolutely horrible. I have been on this drug for over ten years. I got IIH from Lupus and I do not believe this is a disease caused by weight..as the british say, there is no proof...weight is only a symptom of the overeating caused by the disease or hormones. in this obese society everyone would have it if it were weight and it's that thinking that stops the progress of study into the disease! Men, children, skinny people get it too. I had every single horrible side effect. My disease, well the grade four papilledma, is gone I still have many symptoms and on top of that have to deal with the symptoms of the drug which now include a serious tinnitus that I am reading has caused deafness and or hearing loss in many people on the drug...some get it back some don't. It is my greatest hope that they will do research and begin to understand this awful illness. The latest 40 year study I read confirmed the loss of cognitive levels and impairment for life in patients with IIH whether primary or secondary. I gained weight from steroids with lupus...couldnt stop eating...I lost weight, I exercise, I eat healthy....nothing has changed the illness and most studies confirm that few people are helped by weight loss....everyone feels better when they lose weight my question is the chicken or the egg...is the disease active at low levels in the brain causing overeating and are there hormonal issues....or does the eating come first causing hormonal issues and an increase in the disease.... That's my rant. Diamox is a horrible drug and should not be taken long term. It is great for short term use or small doses from some conditions. The medical community needs to take this illness seriously, study it and come up with something better than diamox, topirimate (which is even worse) and shunts.
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Reviewer: 25-34 Female on Treatment for 5 to less than 10 years (Patient)

Comment:
The only thing that I don't like about taking this med is the dizziness and lightheadedness and some times I have tingling in my feet, hands and face. But other then that it has be fine.

Comment:
The only thing that I don't like about taking this med is the dizziness and lightheadedness and some times I have tingling in my feet, hands and face. But other then that it has be fine.
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Reviewer: Barb, 35-44 Female on Treatment for less than 1 month (Patient)

Comment:
I personally, have had a lot of side effects with this med.However,I also am in the process of spinal surgery too. so.....

Comment:
I personally, have had a lot of side effects with this med.However,I also am in the process of spinal surgery too. so.....
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