Well I write this in disappointment today. After over a year attack free on topamax, I rolled over in bed this morning to that all to familiar feeling I get when I get a MAV episode. The room was swimming. I quickly sat up and everything was tilted, moving etc. it was horrible. Now any head movement brings on a swimming sensation. Lying down is hard as I feel like I flipping and swimming all over ( esp if I move my eyes) and once I get through that, getting back up is a nightmare. I’d seriously forgotten what it was like. I’m feeling desperate again and like someone has ripped my security blanket from me.
Every time I’ve been dizzy thus last year I’ve thought to myself, I won’t get an attack, I’m on topamax. I just proved myself wrong.
I feel like I’m back to square one.
A questions if anyone could help! Has anyone experienced a relapse while on meds and got better again ( is this normal? ) of course, I’m now questioning if this is even MAV and silly thoughts like that!!
Yep, experienced this more than once. In fact I’m really envious of you having a whole year attach free -that is brilliant. The fact that you have had one “relapse” doesn’t’ mean the med isn’t working or has stopped working.
I know it’s hard but instead of focusing on this current attack, think about how well the med has helped you and the other 11+ months where you were attack free.
Maybe there has been an accumulation of triggers that have combined to put you “over the edge” into a major attack, but there’s no reason to think this is your new normal. Hopefully things will settle again quickly and you’ll be back to your new normal
Thank you so much lorcalon. I can’t believe how down this has made me and how anxious! I’m pacing around the house holding onto things like a mad woman with my eyes not tracking properly and everything moving after I turn, just because I’d forgotten how to cope with this dreaded thing. Can’t thank you enough. I needed sense talked into me. The hardest thing is not having a ‘safe position.’ I can’t find anything that stops the movement and lying back is horrendous. You are right though, I need to keep focussing on the good. I keep playing thoughts in my mind re how this is a bad sign etc. thank you for the support and the words of wisdom!
Lorcalon is right. Remember what Rauch said: even on a good drug a “fat kid” can still hit the pool and we take all of the water in the face (the analogy of us standing in a swimming pool and the water level being the trigger level). It doesn’t mean Topamax isn’t working for you.
Another thing I’m wondering. Is this possibly a BPPV attack? Did your eyes pulse in a clear direction when you rolled your head in bed this morning? This is what happened to me twice. Full on vertigo. And then feeling wrecked for about a week afterwards. Had to use the MEP to get the rocks back in place. Migraineurs are 3X more likely than all others to have a BPPV attack for no reason at all (idiopathic).
AG Not Good. You have been under stress as you said in an earlier post you need to fly to Sydney to see your father-in-law who is very ill and flying makes you very anxious - so that would definitely raise your trigger levels right up.
And Scott’s suggestion - BPPV could also be right, especially the rolling over in bed cause - that’s what Dr Granot diagnosed me with last year when I had a sudden vertigo attack. A visit to a physio who was able to do the Epley/Hallpike fixed me up in 2/3 visits. Could be worth finding a physo or doc who can do this for you. My husband had a go from a u-tube video Dr G sent but the physio ex was much better! Don’t think it can do you any harm.
As Scott/Lorcalon say - you’ll get back on track for sure.
Yep, I had a bit of a relapse over Christmas. I got a nasty flu which blocked up my ears and then after the flu one ear stayed blocked for days in the migraine way, with humming tinnitus and vertigo. Christmas was a bit stressful too. Anyway, I upped my dose of Topamax from 50 mg to 75 mg (still below the 100 mg I was meant to be on) and within a few days I came good.
Not Good. You have been under stress as you said in an earlier post you need to fly to Sydney to see your father-in-law who is very ill and flying makes you very anxious - so that would definitely raise your trigger levels right up.