I was prescribed this medication This past Friday because Of debilitating headaches that I had even before my tethered cord surgery 3/13/14. (I also had chiari decompression with cervical laminoplasy on (9/23/13)). Doctor did ophthalmologic exam which suggested there could be some increased pressure in the head, and this could be treated with Diamox. If this medication does not help after 2 weeks then I may need a lumbar puncture to measure the opening pressure, as the gold standard for measuring intracranial pressure. Today is my fourth day on this medication and so far my headaches are as bad as ever and I have very sensitive parts on my body that is touched really hurt. Has anyone been on this medication or is anyone on this medication? The other thing is it makes me sleep constantly. Any feedback would be greatful. Thank you and God Bless Karen
Karen
I am on Diamox 500 mg daily for headaches/constant head pressure. This medication has done nothing to relieve the pressure I suffer with on a daily basis. I am also taking topamax along with it. I am drowsy throughout the day but not sure if it is all of my medications or the fact that I am an insomniac. I had a lumbar puncture and opening pressure was 25 on that day which is considered on the low side of high but still high. I was also told your opening pressure could be different depending on the amount of pressure you are experiencing at the time of the LP. I am not sure about all of this but just what I was told. I do know there are days the pressure in my head is unbearable and most days I can just feel it crawling up my head. I know that sounds crazy but it is true. The more active I am the more intense the pressure. I try to explain this to the NL and NS and they look at me like they don’t understand what I am talking about. I had decompression surgery without the duraplasty last June and my NS says he will not do a second surgery because he has deemed the first surgery a success. Well here I am 10 months later in the same condition as I was then, so I don’t deem it a success. I hope you get the answers you are seeking. God bless you.
Melanie
My pressure wasn't high enough for my local neurologist to prescribe any medication. Instead he wanted to send me to an neuro opthamologist. I let his office refer me and my appointment isn't until September. I will hopefully have answers from Dr Heffez before then. Not sure why my local neurologist wants to refer me to the neuro opthamologist since he was so certain I didn't have increased pressure since the regular eye doctor said my optic nerve looked normal.
The radiologist that did my lumbar puncture told me normal pressure is 20 cm. 25 cm and greater is considered pseudotumor or idiopathic increased hypertension. My pressure was 23.5. They removed 10 cc of fluid but it didn't change my symptoms.
I am on acetazolamide, which I’d generic dismox. I actually take 500mg 2 times a day. I’m not quite sure why anymore and plan to ask my neurologist at my next appointment. I haven’t had any problems with it. But I take enough meds. I was put on it to slow the spinal fluid and relieve some pressure. I had my surgery a month ago. I wonder how long I really need to be on it. The only side effect I’ve noticed is that it makes me pee a lot
I'm also on the Acetazolamide 500MG twice a day, though I usually only take it in the morning. It makes me pee SO much that I can't sleep. For me it was a game changer, since the pressure was so bad I'd developed papiledema and the pressure pain in the top of my head was unbearable. I've been diagnosed with progressive hydrocephalus secondary to the Chiari, so it really does drain a lot of liquid, but with that being said, not enough to stop the progression or damage to my brain, as I now also have Empty Sella Syndrome. The only side effects I've had from it is loss of minerals from the excess peeing, which has caused a lot of pins and needles. I pretty much rely on bananas and avocados to get by.
Wow. It sounds like you are caught in a vicious cycle. What is empty Sella syndrome? That I have never heard before. Do you have a syrinx? That also can cause the pins and needles. And if you take any pain meds than I really feel for you having to eat bananas. I think most of us know what I mean. Best wishes!
Danie said:
I’m also on the Acetazolamide 500MG twice a day, though I usually only take it in the morning. It makes me pee SO much that I can’t sleep. For me it was a game changer, since the pressure was so bad I’d developed papiledema and the pressure pain in the top of my head was unbearable. I’ve been diagnosed with progressive hydrocephalus secondary to the Chiari, so it really does drain a lot of liquid, but with that being said, not enough to stop the progression or damage to my brain, as I now also have Empty Sella Syndrome. The only side effects I’ve had from it is loss of minerals from the excess peeing, which has caused a lot of pins and needles. I pretty much rely on bananas and avocados to get by.
I do not have a syrinx, and I almost say, "unfortunately," because the lack thereof has caused regular neurosurgeons to not take me seriously. I have a list of symptoms and secondary conditions that are a typed page long, but the run of the mill neurosurgeon says, "there's something going on, but it's complicated, and it isn't Chiari, and your ventricles are still small, though not slit like." WTF?!?! I get seen once for a consultation and then dropped, and neurologists and ophthalmologists won't even do that. I live in Indiana, and there isn't a "Chiari Specialist" here, or a neuro-ophthamologist within an hour's drive, so I'm left to my own means.
Actually, Acetazolamide is the only medication I take. Empty Sella Syndrome means my pituitary gland has been smashed by the hydrocephalus, so the chamber called "Sella" where it sat is not empty. Here's a pic I found on Google - http://www.radiologyassistant.nl/data/bin/a509797a621c41_hypertension2.jpg - Without a pituitary gland I am missing opioid receptors, so pain pills do nothing for me. I can take 3 oxy at once and still be in pain. I see an acupuncturist twice a week, and she has gotten most of the compression and pressure pain under control. I do have pretty severe dysesthesia in my arms, face, and torso that has only gotten worse.
I need surgery, but I don't have $100,000 for a specialist, so I remain grateful for what I have and try to always count my blessings :-) Life is good despite these things.
jessica said:
Wow. It sounds like you are caught in a vicious cycle. What is empty Sella syndrome? That I have never heard before. Do you have a syrinx? That also can cause the pins and needles. And if you take any pain meds than I really feel for you having to eat bananas. I think most of us know what I mean. Best wishes!
Danie said:I'm also on the Acetazolamide 500MG twice a day, though I usually only take it in the morning. It makes me pee SO much that I can't sleep. For me it was a game changer, since the pressure was so bad I'd developed papiledema and the pressure pain in the top of my head was unbearable. I've been diagnosed with progressive hydrocephalus secondary to the Chiari, so it really does drain a lot of liquid, but with that being said, not enough to stop the progression or damage to my brain, as I now also have Empty Sella Syndrome. The only side effects I've had from it is loss of minerals from the excess peeing, which has caused a lot of pins and needles. I pretty much rely on bananas and avocados to get by.
Wow. That is crazy, unfortunate, and I have to say, interesting to say the least. With the lack of specialists in your area, I’m actually surprised the empty sells syndrome got diagnosed. I can’t tell you how much I hope things get better for you. And I have to say. .you seem to have such a wonderful outlook on life. It’s inspiring!
Danie said:
I do not have a syrinx, and I almost say, “unfortunately,” because the lack thereof has caused regular neurosurgeons to not take me seriously. I have a list of symptoms and secondary conditions that are a typed page long, but the run of the mill neurosurgeon says, “there’s something going on, but it’s complicated, and it isn’t Chiari, and your ventricles are still small, though not slit like.” WTF?!?! I get seen once for a consultation and then dropped, and neurologists and ophthalmologists won’t even do that. I live in Indiana, and there isn’t a “Chiari Specialist” here, or a neuro-ophthamologist within an hour’s drive, so I’m left to my own means.
Actually, Acetazolamide is the only medication I take. Empty Sella Syndrome means my pituitary gland has been smashed by the hydrocephalus, so the chamber called “Sella” where it sat is not empty. Here’s a pic I found on Google - http://www.radiologyassistant.nl/data/bin/a509797a621c41_hypertensi… - Without a pituitary gland I am missing opioid receptors, so pain pills do nothing for me. I can take 3 oxy at once and still be in pain. I see an acupuncturist twice a week, and she has gotten most of the compression and pressure pain under control. I do have pretty severe dysesthesia in my arms, face, and torso that has only gotten worse.
I need surgery, but I don’t have $100,000 for a specialist, so I remain grateful for what I have and try to always count my blessings
Life is good despite these things.
jessica said:Wow. It sounds like you are caught in a vicious cycle. What is empty Sella syndrome? That I have never heard before. Do you have a syrinx? That also can cause the pins and needles. And if you take any pain meds than I really feel for you having to eat bananas. I think most of us know what I mean. Best wishes!
Danie said:I’m also on the Acetazolamide 500MG twice a day, though I usually only take it in the morning. It makes me pee SO much that I can’t sleep. For me it was a game changer, since the pressure was so bad I’d developed papiledema and the pressure pain in the top of my head was unbearable. I’ve been diagnosed with progressive hydrocephalus secondary to the Chiari, so it really does drain a lot of liquid, but with that being said, not enough to stop the progression or damage to my brain, as I now also have Empty Sella Syndrome. The only side effects I’ve had from it is loss of minerals from the excess peeing, which has caused a lot of pins and needles. I pretty much rely on bananas and avocados to get by.
Hey KMS,
I have an arachnoid cyst located on the cerebellum, pushing things downward, mimicking Chiari symptoms; removal of it has been ill-advised so far, but I did have to take action nearly 2 years ago when the cyst closed off the cerebral aqueduct, I began to get hydrocephalus, and I had a procedure called an endoscopic third ventriculostomy, or ETV for short, where the CSF flow is re-routed through a new path in the brain. Since then, I still have CSF pressure issues, including high results in lumbar puncture, so I have been taking diamox standard (not the sequels) for about 9 months, 250MG X 3 times per day. The last dose of the day is accompanied by baclofen 10mg. At first, the only thing these meds did was space me out. But after about 3-4 weeks on it the side effects leveled off and I do get some (nowhere near 100%) relief. Hopefully you will see the negative effects taper off as well. Best of luck to you!