Verapamil trial II

Hi All,

I had a hit of verapamil this morning – just 10 mg. I tried this stuff before about 2 years ago and I was so dizzy from it I threw in the towel after 2 days. I took the dose at about 8.30 am and it’s now 11 am. The dizziness just hit about 15 minutes ago. It’s probably 4 or 5 times worse than what I might get on a bad day so this is challenging to say the least –- especially at work.

Can you guys remind me that this is normal … that you were dizzier on this at first if that was the case? I really want to get through this initial period and crack this if that’s all it is to see if this can work. If it escalates much more I may be in trouble though. It just becomes impossible considering I’m on a computer screen all day. The feeling of motion is quite something right now and it’s a real brain scrambler.

Thanks … S :shock:

Bloody hell. :!: Hope it works out for you.

What a day! These drug trials are not for the faint of heart. I made a pile of mistakes today and my memory is shot. I think the Program director here is wondering if I’ve been smoking something illegal :shock:

Hmm. I took my first and only dose of verapamil - 120mg SR, the same day I got my serotonin syndrome bigtime - at least I’m pretty sure that’s what it was…
I previously thought the verapamil didn’t make a difference… perhaps it did after all.
Most people seem to agree that it’s a very mild drug to begin, so I wasn’t very scared of it at all, and haven’t really blamed it since then either. Might have to rethink that a bit.

I am glad I am not the only one. The neurologist laughed at me last time I saw him and I told him I was really dizzy on just 20 mg a day of verapamil all those years ago. I never carried on because it was in the days before computers and I had no knowledge that the side effects might pass, so things may have got better.

I am thinking of trying it again as our bodies change. I did 3 months of amitryptyline years ago, only three quarters of a tablety a day, but wasnt too bad on it, lately, I have tried it twice and each time it has sent me into depression, weird but true.

I hope you have success with this one, might give me the incentive to try it again.

Christine

Tran,

If I had taken 120 mg as a first dose I would have left work today on a stretcher. Just 10 mg has knocked the stuffing out of me all day and I still feel like I’m in another world. Only now I’m coming back to earth only somewhat but that’s only because I took it 12 hours ago. Tomorrow I’ll be topping this up again … could be a rough one.

Would you consider trying Verapamil again but starting very low this time? Everyone seems to cruise with this med. I’m determined to give it my best shot.

The neurologist laughed at me last time I saw him and I told him I was really dizzy on just 20 mg a day.

Doesn’t that just p**s you off when they say that? I think Steve Rauch is the only physician I’ve come across of the neurologist breed who readily acknowledges that migraineurs can react to homeopathic doses of these meds. It may very well be worth revisiting Christine. Maybe start on a lower dose. Molly and Nance both saw their dizziness rise for the first week or so and then go. Nance is now completely free of this miserable condition.

S 8)

Hey Scott,
That sounds rough:-) Ugh. Did you take your blood pressure when you started to feel so dizzy? I understand why your neurologist may have questioned your reaction from a pharmacological standpoint, and the a the half life of verapamil is pretty short (usually with a first dose only about 4-6 hours), so I wonder if there is possibly something else in the formulation that your body is reacting to??? I am a pretty small person (105 pounds) with super low blood pressure and a resting heart rate in the 40’s. I started verapamil 9 weeks ago. 2 days at 20 mg (no side effects), 2 weeks at 40 mg (no side effects), 7 weeks at 60 mg (still tolerating), and yesterday moved up to 80 mg. I am guessing for many the increase in dizziness could be a result of a blood pressure drop that take a little for your body to get used to. How is your blood pressure? Good luck. I really hope it works out for you. I wish there was just one drug we all could take and be symptom free…
Best,
Lisa

Hi Lisa,

Thanks for chiming in. I doubt it’s blood pressure really. The feeling I had was not unlike feelings I’ve had from a few other treatments in the past (CoQ10 sent me flying too). It just feels like the med is hitting my brain (vestibular system?) and throws it all off. But I don’t really know for certain. A BP drop would make me feel light-headed would it not – the sort of feeling when you stand up too fast? Today was just an all round dizzy/dysequilibrium nightmare going on and it’s letting up more and more now as the drug trickles out.

I’m amazed that you had no side effects happening and here I am on 10 mg out on the high seas! :roll: The good news is that I’m not put off and am ready for round two tomorrow.

Do you think it’s helping you at all? Could still be early-ish days at 9 weeks perhaps.

Best … Scott

Scott, I had very similar dizziness when I started Verapamil. I started with 40 mg and then went up from there. I would say that the first 1-2 weeks I was definitely dizzier but then things settled down and I got up to 300 mg over a 3 month period. My dizziness did change somewhat but never really improved from my baseline. Looking back, I think it may have helped slightly. It is hard for me to describe the change in my dizziness but the Verapamil almost made the dizziness even more constant but less severe…it that makes sense! I really hope that you get some relief on it. The only real side effects I had was swollen ankles whne I hit 240 mg and the weather got warmer and a little constipatrion early on. Good luck! Ben

Scott, sorry to hear that you are already getting knocked around by the Verapramil. I do hope you can stick with it a little longer to see if you can eventually tolerate it.

Hey Ben, good to see you. What ever happened re: the Topamax? Are you going to try again with it or are you going with another med or nothing at all?

Cheers, Bonnie

Hey Scott,
I too would doubt that 10 mg would do anything to your blood pressure and I agree the feeling would most likely be a result of orthostatic hypotension (yes, lightheadedness) if you had that. As for me, when I started I was dizzy, rocking, heavy headed, dysequilibrium, basically bedridden 24/7 so I would not have even noticed if I felt worse cause I think that was rock bottom. As far as if it has helped, I suppose I have made some improvement, although I would defer to everyone else because I feel confused whether this is improvement. Okay, so here’s the million dollar question… I still have all the same symptoms and feel horrible all the time, HOWEVER, I am doing a lot more although uncomfortable such as walking on a treadmill, lifting weights at a gym, very short walks outside, running into supermarkets holding on to the cart for dear life and getting out ASAP, and am sitting for short periods in a high backed chair (I have an obscene tolerance for pain…lol, I was a triathlete before all this nonsense). Does this mean I have improved even though I still have all the same symptoms and they are quite intense most of the time (even rocking in bed), but I am doing more???
I know this might sound like a stupid question, but is that improvement to just tolerate the symptoms and be a bit more functional even though there is no quality or comfort to my day or night??? Any thoughts on this would be greatly appreciated.

Also, Scott, I was wondering what your doc’s titration schedule is for you regarding the verapamil? Maybe you could try taking it at night if you are just taking the dose 1 time per day and see if you can sleep off the dizziness. Verapamil is my first drug trial and I am really wanting this drug to work and just hoping my bp and pulse will hold up to the increased dose. 80 mg, the dose I just started at yesterday is still considered tiny so I really hope you can adjust to the med to be able to give it a fair trial.

Keep us posted!
Warmest,
Lisa

Lisa,

Good question. My situation is somewhat similar in that I’m taking 240 mg. per day of verapamil and wondering whether its having a positive net effect. After 3 1/2 months I would have thought it would be as simple as either its working or not working. However, as in your case, it just doesn’t seem that definitive. The improvement, if you can even call it that, seems ever so subtle. Has anyone else on this forum experienced a similar situation with verapamil and, if so, did they stick with verapamil or move on to other meds. Good luck to all. Ed

Hey Ed,
What does your doctor say about your progress and the time frame?
Thanks,
Lisa

Hi Scottie,
I was put on verapamil immediate release for tachycardia,
It definitely made my Mav symptoms worse at first.
After the 3rd week I saw my Dr and asked if I could take the slow release instead, I found the slow release much more tolerable.
The dizziness and disequalibrium decreased.
It took 3 weeks for the side effects to go away and around 3 months to get full results on verapamil.
Nothing miraculous though.

All the best with it
jen

Lisa: Congratulations on being able to do more. I DO think you are getting better. I know that when I am feeling better, I actually do more but I also think doing more makes me feel better, vicious circle. I think after an “episode” the vestibular systems needs to re-acquaint (sp?) itself with directional movement. The balance/movant system part of the ears gets all mixed up. I know the more I push myself to move around even though it makes me feel like crap while moving, I feel better afterwards. I also think being able to do more lessens the anxiety about the whole MAV condition. I know when I am feeling my worst, especially sitting at a the computer, I actually feel better when I get up and walk around for a while.

Keep on moving!

Joan

P.S.: I know what you mean about shopping, I walk around the store holding on to the carriage with white knuckles.

Exercise for me is essential, without it I would feel crappier than ever for sure… I do tend almost always get a headache afterwards, but I can usually sleep it off so that’s ok.

Like this evening, I went running with a friend who’s in a much better physical state than me, and we went running for 50-60 min; I felt like I was going to die lol, but I feel great (and the headache’s not so bad) now. Good night!

Hi All,

Some weird stuff going on with this trial:

Last night when I got into bed I had some pretty loud tinnitus going on that I haven’t had for years. As I was lying there drifting off, my legs and arms started to flinch as though there were electric pulses jolting along. Nothing too crazy but clearly my nervous sytem is wired. I woke this moring with an excessively “thick” feeling in my head … my memory is shocking as well. Once at work this morning, I pulled my laptop out of my pack and put it on the desk. Seconds later I looked into my empty backpack and thought, “Damn, I forgot to bring my laptop to work!” DOH. The dizziness is less severe today but the feeling of being on another planet is worse. Let the good times roll! :?

Scott

Hang tough Scott - the first week or so was definitely very tough for me too. Ed and Lisa, I definitely experienced the feeling of being able to do more but without having much relief from the 24/7 dizziness. Like you guys, I was able to do more activity but my dizziness was still there and I still had some very bad days. It was very strange and in the end I decided that I wanted to try something different. Looking back, I wonder if adding something else to the Verapamil regime may have done something…worth thinking about. The only thing I added while on it was Klonopin and that didn’t do much. I am now only on low dose Klonopin, plotting my next med trial. Ben

Thanks Ben. What med is in the pipeline for you next?

Scott

Scott, I am torn between trying Topamax again, maybe going even slower or trying Zoloft. I actually started Klonopin back up yesterday, twice a day low dose - that is all I am on now. I was med free for about 10 days after my failed Topamax trial. I really wanted to try a prolonged med-free period but wanted to also try the Klonopin without anything else. The last time I tried it I was also on Verapamil. So…my plan is to stay with Klonopin only for another week or so and then decide whether to go back to Topamax or try the Zoloft. I keep thinking about Howie and his success on Zoloft (along with Klonopin and Verapamil). I also know that Colleen did very well with Cymbalta, but I tried Effexor and it didn’t do it for me and I think it is closely related to Cymbalta so I was thinking Zoloft may be a better next try…who knows! Good luck with Verapamil and keep me posted and I will do the same. Ben