Just got back from a Neuro appt. New plan is to try verapamil while conducting the exposure therapy PPPD treatment.
If verapamil doesn’t offer any relief, the next med I’m going to try is the Aimovig injections.
Will keep the forum posted of any progress with these drugs.
All the best, D x
Best of luck! I’d like to try verapamil but my doctor won’t let me because my blood pressure is normal. Please keep us posted no matter which route you choose!
Thanks Jess!
That’s a shame about your blood pressure, blood pressure meds tend (in my experience) to have relatively few side effects. Are you on any preventatives at the moment?
You’re welcome. Yeah, I mean I’m glad I have healthy blood pressure, but I have heard such good things about verapamil helping the dizziness more than other preventatives. I’ve been trying a bunch of preventatives and am having a hard time tolerating them. The stupid trial and error that we all go through.
Yeah it’s so difficult isn’t it. I’ve had a very time tolerating drugs too - failed amitriptyline, propranolol, topamax, and flunarizine due to side effects.
My Neurologist thinks I should be moving towards injectables due to them causing fewer side effects - have you considered aimovig?
Good to hear your update. Guess you haven’t started the PPPD exposure therapy as yet. So, after all the drugs you’ve already trialled, now they say Verapamil next. Good luck with that. I think the Calcium Channel Blockers and Betablockers are much easier to tolerate than many others, From what I’ve read a very few people react very promptly to tiny doses of betablockers and quit, and the rest just on with it. That said I think they probably take much longer to work than some others. It was eight months at quite high dose before Propranolol really started to help me but it’s gone on giving and I’m talking 18 months later now. If I might enquire, what side effects did you experience with it to make you quit.
@jess09 I guess the Calcium Channel Blockers are very effective at lowering blood pressure, much more so than the betablockers. My BP is on slightly high side and the Propranolol hasn’t lowered it one bit. Of course with Propranolol a high for MAV dose is actually low end for BP dose. Helen
Thanks Helen!
I’ve started the PPPD treatment. I’ve not found it terribly useful. In a nutshell, I would describe it as gradual exposure to dizzying scenarios coupled with some relaxation techniques and motivational work. I have seen some slight improvement from this, but it’s little more really than concepts that we chronic MAV-ers are familiar with already.
The limiting side effect of propranolol for me was severe chest pains. I tried pushing through this but they were very frightening and wouldn’t go away.
Hope you are still travelling well on prop?
All the best, D x
You any better today Helen?
Jo xx
No I think once you’ve been around MAV as long as you are I, there’s not much more they can throw at us, cos from a practical management point of view, we know far more about it than they do, and really they ought to be reading the book we could so easily write!
Sorry to hear about ‘chest pains’. Scary that. I guess it was trying to change your heart rhythm which objected cos it didn’t need changing anyway. Pity there aren’t more migraine specific drugs, still maybe these injectables will be The Thing, eh. Hope so, Thanks for the enquiry, I’m still moving forward with the Propranolol, usual blips you know, colds and so on. If you are feeling really bored sometime you could read my Personal Diary just to get some idea of my progress. Oh, and it might just help you get off to sleep if insomnia’s a problem anytime! Looking forward to hearing how you are going. You’ll be able to chat Verapamil with @ander454. All the best Helen
That is so very true.
I’ve followed your story loosely lurking around on the forum and am so pleased for you that you seem to be doing really well.
All the best - long may your upward trajectory continue. D.
I was much better yesterday apart from some remnants of almost Visual Vertigo symptoms around TV, very slight, even went out for a good walk in the autumn colours which I thoroughly enjoyed. Walked some slopes and rough ground I guess. Didn’t go that far, certainly under the 2 mile mark and felt fine but, as seems to have become the norm, I have to pay for it next day. Despite good night’s sleep and being totally steady first thing, my balance has gone gone off once again. I’m up, getting on with things, baked bread etc, etc but feel bit dopey and ‘off’. So frustrating, keeps happening. One good walk and I’m planning the next one for the next day, and then it seems I come unravelled at the edges and tomorrow never happens! Helen
I had normal blood pressure and titrated up to 360mg of Verapamil. My blood pressure has never dropped lower than 110/70 and remains normal. Seems strange that your doctor won’t prescribe it, or even start you on a low dose, is he/she a Neurologist? Verapamil is a very traditional migraine medication, used all the time for people with normal blood pressure.
Awesome, good luck with it. I’ve had good success with it, - the biggest improvements have been at the higher doses and after 3-6 months of taking it. Its sort of a long haul med I think…
Thank you!
Wonderful to hear that it’s been helping you. I’m starting at 180mg ER, I was told I would need to get regular ECG’s at the higher doses - have you had to do that?
My Neurologist said if I wanted to get up to 480mg I would need the ECG. He assured me though that most people are still fine at the higher doses, the ECG is just to ensure safety. I still might go there, but I might add another med into the mix instead. Not sure yet, might just stay at 360mg.
Main side effect is constipation, but you probably already knew that. Stick to magnesium citrate and prunes and you should be fine. 
Ok, thanks! I’ve had ECG’s before and they’re nothing to worry about. Hope you continue to do well!
All the best, D