Hi guys,
Just thought I’d drop a post to let you know that my Dr has finally decided that my symptoms might not indicate uncompensated Labs/VN and in fact might be indicative of MAV. They are now going to try me on Verapamil. I took my first pill a few minutes ago and we’ll see how it goes from there.
Keep your fingers crossed for me! 
Mark
Good luck. I don’t think I’m too far behind you!
best,
Molly
Good luck Mark,
How much have you started on? I have a script for it as well –– and Cymbalta. I was holding off on all drugs to see how I would be and as of yesteday the bottom began falling out on day 5 after stopping Paxil. It’s amazing how initially after stopping an SSRI, I feel really good. It’s like the effect is still there and working minus the negative side effects of the daily dose. If only I could find a serotonin enhancing drug without side effects.
Best … Scott 8)
Hi,
Thanks for the good wishes.
I was told to take a single pill (80mg) on day one, then two pills for the next two days and three pills from then onwards. I hope it does help as all the other drugs out there seem to be heavy on side effects.
I’ll keep you all posted.
Mark
Mark, I wish you well. I will be following your progress. I have an appt. in one month and am planning to ask the Dr. for a verapamil Rx. I hope by then you will be seeing some benefit. Good luck. Kristen
Good to hear Mark!!! I am on Verapamil. I take 360mg of the SR or ER. Keep in mind to be very patient with it. Some might find relief right away and others it might take the full 8 weeks to completely do its thing. make sure you drink plenty of water and get enough fiber :mrgreen: …other than that you should find it to be an easy preventative to take. Keep us posted!!!
Pam
Hi everyone,
Well it’s now day 4 on the verapamil. First day was one pill (80 mg), next 2 days I took 2 pills and I’ve just now taken 3 pills. So I’m up to full dose. I haven’t had a proper heavy dizzy attack since I started on it, but then after only 3 days that could just be coincidence. I’m keeping my fingers crossed though. Mild dizziness is still hear, but no proper flareups this week.
The only negative I can say so far is that I can feel dizzy if I stand up too suddenly. Thats’ expected though as verapamil lowers blood pressure and my blood pressure is normal usually. Thats symptom only lasts a few seconds though.
I’ll keep you all posted as I get used to this drug. No real negatives to report so far though. Early days still…
Take care
Mark
Hi guys,
Here’s another update. I’ve now been on verapamil for a week and have for the last few days been at about 90% normal, with only one proper dizzy spell (that lasted about 15 mins). Early days still but the last couple of months I’ve been about 80% or so normal so 90% is an improvement. I really hope that the improvement will continue…
Hope you guys are feeling better?
Take care
Mark
Wow Mark! That is teriffic news:-) Can you be more specific as to your symptoms prior to feeling so much better on the verapamil. Did you experience rocking, head pressure, etc? Also, was your blood pressure normal prior to starting and how did the verapamil affect your blood pressure? Thanks so much and I only wish you continued success…
Lisa
Hi guys,
Sorry to put a downer on things. I thought that the verapamil was helping (and maybe it is) but I’ve had a relapse and have felt very dizzy the last two days.
Could it still be working? I’ve only been taking it for a week or so. Maybe this is just a temporary glitch as it builds up in my system.
Hope everyone else is on the mend.
Take care
Mark
Hi all,
I too am on verapamil, day 23 without much progress. I plan on sticking this out, but am also wondering the time frame of when others got results???
Thanks a bunch!
Lisa
Hi all, I am starting week 9. I have been up to 240 mg for the past week and plan to got up further, although I can honestly say it hasn’t help me at all yet. I had a bout of ankle swelling two weeks ago when we went to FL - it was very hot. I am hoping that with the warmer weather coming here that this will not be a problem again. Did anyone not have any results at 240 then hit good results at a higher dose? I am just wondering whether I continue with this try or start the process over with a different med. I have been through Effexor and Nortriptyline thus far to no avail. During my Verapamil trail I tried adding low dose Klonopin but that didn’t seem to do much and I am weaning off of that at this point to see if maybe the Klonopin was impacting my dizziness worse and maybe the Verapamil may be doing something…very frustrating. Thank you for any thoughts. Ben
I’m so sorry to hear that Verapamil has not yet worked. I know for me at 240mg it didn’t work and then it didn’t work at higher doses as well. But that might just be specific to me. I know Hain/Cherchi don’t believe in continuing to go up if 240 doesn’t work, but other doctors disagree. I know Buchholtz wanted me to go all the way up to 480. Have you consulted with any doctors? I wish you all the best. I am feeling awful too.
Thanks, Lisa. I too was told to target 480 mg by my local Dr, but as you said Dr Hain has said stop at 240 mg. I do have a rx for 300 mg and may get that filled and give it a try. I am starting to think I am heading toward trying topamax, although cymbalta may be better next try…it is so hard to tell.
When it comes to this ailment----as with Meniere’s as well----it’s pretty much a painful study and realization of different strokes for different folks. So many different treatments…no silver bullets…and so many different people respond differently.
Hang in there…keep trying. Took me several years to get on the right track, but I did. Don’t hesitate to get second, third, and fourth opinions as well…no matter how well regarded the doctor is. Docs are human, too…they make mistakes.
“It doesn’t matter how beautiful your theory is, it doesn’t matter how smart you are. If it doesn’t agree with experiment, it’s wrong.”
----Caltech’s Nobel prize winning physicist, Richard Feynman (May 11, 1918 – February 15, 1988)
So what worked for you in the end?
— Begin quote from “MarkSD”
So what worked for you in the end?
— End quote
At times, I thought morphine might do the trick (kidding).
Seriously, lots of trial and error.
Go to the “Success Stories” thread. It’s been a tough go…but hope exists.
Hi,
Thanks, I’ve now read your success story. It sounds like it’s been a very long road for you. I just hope that it isn’t quite that long for me. Although if someone could say to me that I would be symptom free (or close to symptom free) in X amount of time, then I’d be happy.
I do console myself with the fact that I have made some improvements though. For the first few months of this I was pretty much disabled and unable to do anything. I was also constantly on the verge of throwing up. I’ve certainly improved from there. Even if I am still dizzy all day, every day.
Thanks guys for your advice.
Take care
Mark