Does anybody have experiences with any MAV drugs honing in on their symptoms and amplifying them 50-70% daily!? This is what I have been experiencing for the last 2 months and its really wearing me down. I felt better before I started any MAV drug treatment but my Dr seems to think its unlikely the drugs would cause this themselves and it’s more likely a coincidence. I’m afraid this doesn’t add up for me, having monitored my body with a fine tooth comb for the last 2 years whilst struggling with this disorder. Anybody have any similar experiences, thoughts etc? I’m feeling pretty disheartened atm.
There is no reason to take any medication for MAV that makes you feel worse. As far as I know, there is no pharmaceutical cure, just symptom relief. Not taking medication for MAV doesn’t make it worse or life threatening. I also feel the medications feel like a burden and don’t take any.
pretty much everything i have tried has made me worse. you should try and give it a month if u can and if yours symptoms dont go back to baseline i would dump it but that is just my opinion. many people find the meds make them worse at first but then their bodies adjust within a few weeks and they go back to baseline- then eventually the meds help them. it is an individual thing but i see no point in spending more than a month on something that makes you worse- topamax seems to be an exception though for most people.
Don’t feel disheartened – there are plenty of things you can do besides medication. Scott has written many good descriptions of trigger identifications and how you have to take care of yourself when you have a MAV “constitution.” Some triggers are motion, caffeine, irregular sleep schedule, stress. Of course it’s more work than taking a pill, but I like how Scott describes it as taking care of an elite racehorse. You are extra sensitive and deserve the extra effort!
simon what meds have u tried? which one is making u worse?
Hey guys, thanks very much for your suggestions! Bluesky you are right I have noticed for a long time that I have to be very careful with stress, over work, sleep patterns and eating too much of the wrong things! Although my diet has always been (western comparatively) very good. My Dr seems to think that the drugs can cure the route cause and that you wouldn’t need to stay on them forever whereas other people I know (normally anti drugs people) believe that drugs in general only mask symptoms but don’t cure them, this seems like a very blanket statement to me.
Thanks for your thoughts Sarah, I was on Nort for 4 weeks and felt a good 70% worse for the first 3 weeks and 55% worse for the 4th, then I moved onto Piz, now for almost 4 weeks and feel about 50% worse consistently. Clearly Nort really upset me but I don’t know if Piz is upsetting me too (I suspect it is) or whether its the left-overs of Nort.
I’ve tried a long list of medications at this point. The ones that made me worse generally aggravated my migraine headache symptoms rather than the dizziness. In retrospect I wish I would have given up on each one sooner, but you never know until you give them a fair trial. I’m currently on generic Effexor and feeling improvement in both the MAV and headache symptoms, even though I have a long way to go until I feel “normal.” I had pretty bad start up side effects at each dose increase on the Effexor but those issues went away within a week each time I increased the dose.
Hang in there. Definitely push your doctor for more options if you continue to feel worse on a medication.
How long do you suggest trialing a medication for before its safe to assume its not the one for you?
I have had some of the drugs make my MAV worse and it just makes everything much more difficult The first thing my neurologist informed me when she prescribed the various medications was that it may make my MAV worse. For your doctor to say its a coincidence is very odd in regards to the fact that everybody’s body responds differently to medication. I would feel a bit down if a doctor told me that. I usually stick to a medication for 2 to 3 months and if it does not work I stop it. It can be very frustrating finding the right medication but don’t give up hope.
I’ve had some non MAV drugs make me feel worse. I immediately stopped them. They were an antipsychotic drug (Risperidone) and Prozac. They made the dizziness worse.
Hi Katie, thanks for that, makes me feel a bit better, 2 to 3 months huh, so it would be a good bet if you were feeling no better than baseline after 2 months to start weening off it? I’ve been on piz for about 6 weeks now, I’m still below baseline, not holding out for any miracles yet. I hadn’t realised how gruelling all this drug testing actually is until I started it.
Yep, a lot of drugs are a 12 week trial recommendation (differs from med to med though). Some made my symptoms worse in the beginning, but were then better. For me, I really try to give things the full go barring any serious side effects. In my experience, if a med made my symptoms worse for more than 3-4 weeks it wasn’t going to work in the long run, but everyone responds differently. If the ADs aren’t for you, maybe trying a different class like calcium channel blockers or anticonvulsants could be a next step.