I had emailed my doc saying I didn’t think Verapamil was working and that I’m concerned about starting VRT without any improvement. She prescribed Diamox 125mg. Haven’t gotten it filled yet (had to find a local pharmacy that had it) but apparently I’ll be increasing dosage as the weeks go on.
I did a search on here and am, as aways, afraid to start something new that people have had so much trouble with.
If anyone has had experience with Diamox, please let me know what to expect. I live alone most of the time and really want to start it this weekend since I have someone here in case something goes wrong.
I don’t have any experience of diamox and hadn’t heard of it before you posted about it but I just thought I would post to wish you luck with trying it, it has to be worth a go!
I also wondered if you just had no results at all from the verapamil not even any side effects? Is it your GP who prescribes the meds for you or is it a specialist/neurologist? Do you feel confident in the diagnosis of MAV?
I am on my first week of nortriptyline at 10mg, so far it has done nothing for my dizziness which is so bad at moment, my neck pain has eased a little but I am having some side effects: short of breath, restless sleep, increased heart rate. It’s so tough with these meds isn’t it, knowing if they are helping or making things worse… I really hope you see some improvement on the diamox.
Hi Judy, like Jem I’m afraid I can’t help with the diamox but just wanted to say I too wish you well in your drug trials. I know it can be so hard to begin something new. Especially when you’re on your own. Not quite the same I know but we’re always here for you. Good luck!
And Jem, it’s early days yet so hopefully as time wears on you’ll turn a corner and begin to see improvement. Meanwhile, take heart, lots of folk have SEs at first, so it doesn’t mean nortriptyline isn’t working for you. It’s just so hard though, I know.
Best wishes to you both, here’s hoping for better days soon…
Hi Judy
Just hoping for you that Diamox will help - it must be really tough for you coping with this on your own most of the time.
A pity the verapamil didn’t help but it seems that many of us trial quite a few meds before finding one to help. Of course, some people do find their first trial med works but reading the posts here it seems fairly rare!
Haven’t heard of Diamox & wondering where that fits with the Classification list of migraine preventative therapies?
Good luck with your trial.
Barb
I’m not sure why your dr has prescribed diamox for you. I know it has been used for those with spinal pressure issues on this site. I was seen at Duke University where they were doing studies on the spinal pressures and were using the medication… I was told I was not a candidate for the drug as I had no pressure issues… You might PM Elisha as she was at Duke as well… Are you seeing a neurologist or an internist… What are his or her reasons for prescribing this drug? It is not a first line drug or MAV for sure… Continue asking questions and research this site as there s a wealth of info here… Don’t worry… There are a lot of meds out there… You will find the right one for you… You just must be e patient and ask questions… From long experience, I know this is not easy when you don’t feel well!!
I was also on Verapamil for about a year or so with no improvement… No side effects… Just nothing… I am now taking Topamax and seeing some improvement… But it has been a long time and a long journey… We all have had successes and then crashes…it’s all part of the journey to regaining our health…
Continue to ask questions, especially about Diamox… I’m just not sure why your dr would go from verapamil to that… There are lots of others to try… Please keep us posted… We are all in this together., best regards, Dee
I don’t have any experience of diamox and hadn’t heard of it before you posted about it but I just thought I would post to wish you luck with trying it, it has to be worth a go!
I also wondered if you just had no results at all from the verapamil not even any side effects? Is it your GP who prescribes the meds for you or is it a specialist/neurologist? Do you feel confident in the diagnosis of MAV?
I am on my first week of nortriptyline at 10mg, so far it has done nothing for my dizziness which is so bad at moment, my neck pain has eased a little but I am having some side effects: short of breath, restless sleep, increased heart rate. It’s so tough with these meds isn’t it, knowing if they are helping or making things worse… I really hope you see some improvement on the diamox.
Good luck x
— End quote
Thanks Jem,
I hope you find some relief with Nortipyline and the side-effects go away.
I did have some side-effects with Verapamil, but nothing I couldn’t/can’t handle.
I’m seeing a Migraine Neurologist at Duke, who I feel really confident in. She was an MAV sufferer so her empathy is off the charts.
Feeling some pretty significant side-effects from Diamox, but I’ll keep taking it.
Hi Judy, like Jem I’m afraid I can’t help with the diamox but just wanted to say I too wish you well in your drug trials. I know it can be so hard to begin something new. Especially when you’re on your own. Not quite the same I know but we’re always here for you. Good luck!
And Jem, it’s early days yet so hopefully as time wears on you’ll turn a corner and begin to see improvement. Meanwhile, take heart, lots of folk have SEs at first, so it doesn’t mean nortriptyline isn’t working for you. It’s just so hard though, I know.
Best wishes to you both, here’s hoping for better days soon…
Brenda
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Thanks Brenda
I do feel like a bit of a lab rat right now, but I’m at the point of trying anything for some relief.
Hi Judy
Just hoping for you that Diamox will help - it must be really tough for you coping with this on your own most of the time.
A pity the verapamil didn’t help but it seems that many of us trial quite a few meds before finding one to help. Of course, some people do find their first trial med works but reading the posts here it seems fairly rare!
Haven’t heard of Diamox & wondering where that fits with the Classification list of migraine preventative therapies?
Good luck with your trial.
Barb
— End quote
Hi Barb,
Thanks for your understanding. I wish there was a magic pill that helped us all. See my next post on here to answer the question of why Diamox.
I’m not sure why your dr has prescribed diamox for you. I know it has been used for those with spinal pressure issues on this site. I was seen at Duke University where they were doing studies on the spinal pressures and were using the medication… I was told I was not a candidate for the drug as I had no pressure issues… You might PM Elisha as she was at Duke as well… Are you seeing a neurologist or an internist… What are his or her reasons for prescribing this drug? It is not a first line drug or MAV for sure… Continue asking questions and research this site as there s a wealth of info here… Don’t worry… There are a lot of meds out there… You will find the right one for you… You just must be e patient and ask questions… From long experience, I know this is not easy when you don’t feel well!!
I was also on Verapamil for about a year or so with no improvement… No side effects… Just nothing… I am now taking Topamax and seeing some improvement… But it has been a long time and a long journey… We all have had successes and then crashes…it’s all part of the journey to regaining our health…
Continue to ask questions, especially about Diamox… I’m just not sure why your dr would go from verapamil to that… There are lots of others to try… Please keep us posted… We are all in this together., best regards, Dee
— End quote
Thanks Dee,
Thanks for all your concern and support.
I’m seeing a Migraine Neurologist at Duke and honestly don’t blame her for trying to Diamox. It’s used primarily for inter-cranial hypertension and other than some symptoms, I would be a candidate for that given that over the past 18 months I’ve gained about 50 pounds. 20 lbs from quitting smoking (before MAV) and 30 lbs since MAV from sitting on my ass. I’d rather go ahead and try the med instead of having a lumbar puncture because 1. During the school year I live over 3 hours from Duke and 2. it takes forever to get into see Dr Gray who is the best at doing the lumbar punctures.
Topamax was the first drug my Neurologist suggested, but since my mother had such dramatic side-effects when she was put on it for weight loss, we decided it might not be the best option for me.
Did you have any side-effects coming off of Verapamil?
Thanks again, I’m so glad this forum is here and there are such great people support and encouragement,
Judy
Hi Judy! But of course…I should have read that you were in north Carolina…so of course you are-at Duke… That’s great and as far as I know they are the only institution using Diamox… A few of us ( me included) have gone to Duke to see about the pressure study… You are in excellent hands with Dr Gray, that’s for sure!!
I had absolutely no I’ll effects going off Verpamil… As I recall I did titrate down fairly quickly with no problems…
Ok, I feel better knowing you are at Duke… They are wonderful there. I am in Virginia, so I go to Johns Hopkins and Georgetown which are much closer, but have been to Duke to see Dr Adkins. While she was great, she advocated the same treatment I was doing here, so I decided to stay with my doctors here.
Good luck!