I'm just wondering if any of you have any experience with Diamox? My neuro and doctor are trying to diagnose me with EA2. My neuro has suspected it for several years now, but I can't afford the $18,000 for a genetic panel despite insurance. There are a couple of other genetic ataxias he has thought so he thought he would rule out EA2 with Diamox (a cheaper method than the genetic testing). I am already on other medications like Gabapentin (for migraines, nystagmus, and neuropathy) & Klonopin (for vertigo). This has helped me enormously, but I was still getting bad attacks despite the gabapentin. So I started the Diamox about four days ago.
I had very mixed emotions about the whole thing. I am scared that it WILL work and then I will have just one more medication I HAVE to take for the rest of my life or that I will build up a tolerance. I am scared that it WON'T work and I will be back to square one of not knowing what kind of ataxia I have. I have read that some people with EA2 don't respond well to it anyway, so I wondered how reliable it really is in ruling out EA2?
Since starting it I have had some very sick days. Lots of nausea, diarrhea (sorry for sharing the less appealing symptoms but I need to know what is normal), some dizziness, and the occasional tingling in my fingers and toes. Yesterday I felt better, and was encouraged, but then today I felt sick all over again. I am on a very low dose to begin with - just one pill a day for a month. He said if that doesn't work then we will try two a day for a month.
I must mention I already have Celiac Disease, and Colitis so I have a LOT of stomach issues. I am very nervous about the continued possibility of always feeling nauseous or having bathroom problems. If any of you are on this, have these symptoms gone away?? And what kind of help have you received from this medication?
Anyone with EA2, do you get vertigo, and does the Diamox help with the vertigo attacks or migraines? The gabapentin was helping me with the migraines a lot. I guess I am just nervous to upset the balance I had. Starting any new med is always hard for me. Especially when a potential diagnosis depends upon it.
Hi, I also have not had official testing due to the cost. I have tried Diamox and it made me very depressed and I could not get to a therapeutic dose. Diamox also can work wonders for people then the effects wear off, so yes you might have that hurdle of building a resistance to it. Sounds like it might be helpful not to feel attached to a particular outcome, but just try it and see what happens.
Your dose of one tablet is still quite high (250mg is the lowest I belive) if you're sensitive to medication and have issues such as Celiac. I have a medication dose line, I say to the Specialist, think of the lowest dose, they do, then I say 1/4 it.
However, my main message to you is that if Diamox does not work for you that doesn't mean to say you don't have EA2, it's way too simplistic for a medical professional to draw that conclusion, if you do feel better on it then it simply supports the diagnosis.
I've had some good success with Endep, but then had to reduce the dose as I got bladder problems. Clonazepam helps,it's a benzo but I am on a stable dose. I'm also following a food plan called GAPS, it is very strict and has no grains in it, but I did notice a difference in my functioning, have a google about GAPS as it is very likely to settle your stomach issue.
All the best and keep us updated on how you go with the meds.
I am very sensitive to meds myself. I don’t know which SCA I have due to expensive cost of testing. I tried Diamox n in 15 minutes I felt really sick. I had a severe allergic reaction to a similar med in hospital. Both meds could be used for seizures also. Gave up on it n just do without meds. I do wonder what I would feel like if I could find a med that might help me.
I was started on Diamox last March as my neuro thought my symptoms were EA2, they also began DNA testing, (luckily in the UK its free).
They started my dose very low and I built it up over a 2 month period. During this time I found myself very tired and lethargic with very strong pins and needles in my hands and feet. But! once I had reach my dose of 500mg a day I could not believe how much better I felt. The attacks didn't last as long and I seemed to have longer in-between them. The pins and needles still persist but I can deal with that. Unfortunately it doesn't help with the vertigo and I have had to increase my dose to 750mg, this happened about 2 months ago after I found my attacks were becoming more frequent again. But once again when my system became used to the dose I now have more energy and feel more myself in-between attacks again and they have slowed down.
My Neuro diagnosed me from my symptoms, neurological testing and most importantly (he said), my reaction to Diamox.
I am still waiting for the results of the DNA but they have informed me as they only know a small amount of genes that cause these diseases it could be years before I know one way or the other.
The Diamox Sequels that I take we’re prescribed years ago. The Sequels are timed release. When I took the name brand, I got diarrhea, so I only took 1 per day contrary to the prescription. My Dr, when he found out several years later and I complained of daily migraines, switched me to the generic. I still had problems with diarrhea but only occasionally. Are you in the United States? A recent switch to a generic made by Heritage pharm, I am guessing pharm is an abbreviation, has no diarrhea side effects. I also find that if I eat gluten, I have problems. If I eat Greek Yogurt by Dannon, my digestive problems improve significantly. I used to eat Activia but recently I have found the texture is more watery and I don’t like it.
Thank you for all of your responses! It does sound like I'm on a very high dose... 500mg is what I was started on. I am going to try to bland my diet a bit and see if that helps before I do anything else. I am very tired, but as I hear it may go away as your body becomes adjusted?
I have noticed I'm not having migraines, and no vertigo attacks since I've started. Perhaps the vertigo attacks is a coincidence though since I've only been on it for five days now. I also take a regular dose of .5 mg of klonopin. That is what helped my vertigo the most. I can take a rescue dose, but I really don't like to as I get so sleepy. Of course now with the Diamox I'm already tired so I've been thankful I haven't had to worry about vertigo yet.
Like others I am also sensitive to meds. I was pleasantly surprised when I started Gabapentin and the daily dose of Klonopin. Neither one gave me any issues (maybe some spacey feelings till I adjusted). They have been SO helpful, and I'm glad I took the risk. It is part of what prompted me to take the risk of trying Diamox despite my sensitivities to meds.
I will look up the GAPS diet. Haven't heard of it although I've heard of many others.
I was curious about the genetic testing mentioned in the UK by Debra. Is it normal for it to take years to get results back - even in the US? I didn't ever think about how long it might take to get results. I do live in the United States, and if my stomach issues keep up I will ask about the generic version Rae mentioned.
Ah Klopin is as what I know as Clonazepam and I take .75, it was taking this medication that got me out of bed when I couldn't get up for 10 or was it 12 weeks. Wouldn't be with out it. I also up the dose occasionally if I have something important to do. However, if I have a bad spell now higher doses don't seem to help, but I am grateful for what it is doing in general. I also use Sturgeron at times, again is not a cure, but it does help if I have a vertigo episode. I order mine from the UK it's a common travel sickness pill over there available for under 3 pounds, but not available in the US or Australia. They are good to carry around as they also stop nausea etc within 10 minutes. The only reason why I know about it was that I was given it under a special medication scheme here.
MissCake2 said:
Thank you for all of your responses! It does sound like I'm on a very high dose... 500mg is what I was started on. I am going to try to bland my diet a bit and see if that helps before I do anything else. I am very tired, but as I hear it may go away as your body becomes adjusted?
I have noticed I'm not having migraines, and no vertigo attacks since I've started. Perhaps the vertigo attacks is a coincidence though since I've only been on it for five days now. I also take a regular dose of .5 mg of klonopin. That is what helped my vertigo the most. I can take a rescue dose, but I really don't like to as I get so sleepy. Of course now with the Diamox I'm already tired so I've been thankful I haven't had to worry about vertigo yet.
Like others I am also sensitive to meds. I was pleasantly surprised when I started Gabapentin and the daily dose of Klonopin. Neither one gave me any issues (maybe some spacey feelings till I adjusted). They have been SO helpful, and I'm glad I took the risk. It is part of what prompted me to take the risk of trying Diamox despite my sensitivities to meds.
I will look up the GAPS diet. Haven't heard of it although I've heard of many others.
I was curious about the genetic testing mentioned in the UK by Debra. Is it normal for it to take years to get results back - even in the US? I didn't ever think about how long it might take to get results. I do live in the United States, and if my stomach issues keep up I will ask about the generic version Rae mentioned.
Hey Debra, do you ever take Sturgeron? It sounds like it would be cheaper for me to fly to the UK and have the DNA test done (I'm a UK citizen, but haven't lived there for 20 years), that have it done in Australia!!!!
Debra White said:
Hi,
I was started on Diamox last March as my neuro thought my symptoms were EA2, they also began DNA testing, (luckily in the UK its free).
They started my dose very low and I built it up over a 2 month period. During this time I found myself very tired and lethargic with very strong pins and needles in my hands and feet. But! once I had reach my dose of 500mg a day I could not believe how much better I felt. The attacks didn't last as long and I seemed to have longer in-between them. The pins and needles still persist but I can deal with that. Unfortunately it doesn't help with the vertigo and I have had to increase my dose to 750mg, this happened about 2 months ago after I found my attacks were becoming more frequent again. But once again when my system became used to the dose I now have more energy and feel more myself in-between attacks again and they have slowed down.
My Neuro diagnosed me from my symptoms, neurological testing and most importantly (he said), my reaction to Diamox.
I am still waiting for the results of the DNA but they have informed me as they only know a small amount of genes that cause these diseases it could be years before I know one way or the other.
DNA testing is also free in NZ - have had it done twice and both times they couldn't identify the EA gene but my positive reaction to diamox was so obvious that I have been told it can't be anything else. I have been on 1000mg a day for 7 years and have had no issue with building up a tolerance. I have few actual attacks now but get quite a few other symptoms. I used to have up to 5 major attacks a week - brought on by caffiene, exercise and stress or sometimes nothing at all.
Hi Misscake2, my daughter tried Acetazolomide when the dr's believed she had EA2 but it made her very unwell, especially as it affected her sodium levels and we had to try and get her to consume bicarbonate soda to balance up the levels and it just didn't work and she had no good effects from it at all. They then decided that she probably had a different type of ataxia, not Episodic. I hope you get to the bottom of your diagnosis and get some treatment to help.
I only take Amitriptyline and Diamox, I'm under Professor Michael Hanna at Queens Square, London. I paid for the first consultation at £350 and then he saw me on the NHS after that. It might be worth a try for you if its cheaper.
Deb
Lucy said:
Hey Debra, do you ever take Sturgeron? It sounds like it would be cheaper for me to fly to the UK and have the DNA test done (I'm a UK citizen, but haven't lived there for 20 years), that have it done in Australia!!!!
Debra White said:
Hi,
I was started on Diamox last March as my neuro thought my symptoms were EA2, they also began DNA testing, (luckily in the UK its free).
They started my dose very low and I built it up over a 2 month period. During this time I found myself very tired and lethargic with very strong pins and needles in my hands and feet. But! once I had reach my dose of 500mg a day I could not believe how much better I felt. The attacks didn't last as long and I seemed to have longer in-between them. The pins and needles still persist but I can deal with that. Unfortunately it doesn't help with the vertigo and I have had to increase my dose to 750mg, this happened about 2 months ago after I found my attacks were becoming more frequent again. But once again when my system became used to the dose I now have more energy and feel more myself in-between attacks again and they have slowed down.
My Neuro diagnosed me from my symptoms, neurological testing and most importantly (he said), my reaction to Diamox.
I am still waiting for the results of the DNA but they have informed me as they only know a small amount of genes that cause these diseases it could be years before I know one way or the other.
I take Diamox in addition to Klonopin, it makes me tired and achy at times but in my case I has helped me a lot. I can't afford the genetic testing the doctor's want to do, so I appeciate this combination. I had to stop taking the gabapentin as it seemed to make the ataxic issues worse, but may try it again in the future.