Is the above statement just for Topamax, or for any of the MAV drug treatments?
Iāve read it as a blanket statement for both migraine and vestibular drugs, but given Iām not a doctor, I definitely think you need to work with your practitioner. Iām certain Iāve read it specifically for topomax.
If Iām reading this right, youāre saying youāre noticing days being off again after a bppv episode, is that correct?
If so, yes, usually it takes a time frame for your mind/ear/whatever it may be to readjust again. It took me roughly 2 weeks to be a bit more steady after my bad bad recent lapse, but usually itās been a week for me and then reduced down to 3 days after a lapse as time progresses with this MAV condition.
Iām still not baseline recovered yet after my bad lapse yet though.
yeh it did get worse than it was after bppv. ive hewrd from a few others that they had the ssme haplen. itās getting better though kately lets hope that continues. im still continuing with topamamx
Just a comment to the OP on clonazapam.
I was given clonazapam for āanxietyā in 2000. My symptoms that led to anxiety diagnosis was dizziness/ imbalance in stores, fluorescent lighting. MAV wasnāt a diagnosis at that time. I have a history of classic migraine with aura, and my mother gets hemiplegic migraines.
Anyway, without going into my story, clonazapam has allowed me to mostly function for 18yrs. It was always on an as needed basis and limited amount. Within the last 5 yrs, Iāve been on migraine prevtatives as well. But now that I am having severe attacks that are more like Menieres, I need more clonazapam during bad spells. I have one Dr that gives it to me, and heās a psychiatrist. Yep, I had to go to shrink to get it. None of other Drās would give it even tho they all agree I probably have both Menieres and MAV. So i say I have panic attacks to continue that rx. I find it horrible and shameful that one would have to grovel for this med. My own Neuro instructed me to take it for my spells, but wonāt prescribe it herself. I currently am up to 0.25mg 1x to 2x a day, when I used to take 0.5mg maybe every 3-4 days.
After reading this whole forum I am now going to drop back to 25mg. Iām on day 2 of 50mg and in struggle town.
so thank you.
I ended up trailing 3 meds before I found the one. For me, so far, thatās Effexor XR.
Hi
I donāt know if you still check this forum but how are you doing now?
Did you also change your diet or anything?
Bump
Lisa,
Iām wonder how you are managing? It has been awhile. I have stuck with the topomax. In additionā¦ Kolonopin, Effexor and a strict diet along with supplements. If I really watch my every move, well, I guess Iām much improved and I hope you are the same. I think of you often because you were instrumental in helping me push through with these terrible drugs.
Have you found anything else to help yourself? How are you managing with Covid?
Marg
As @zoology hasnāt posted on here since 2018 I think itās highly unlikely you will obtain a response. People quickly move on.
Thanks. I thought I would try. She was great at a time I really needed help and she was very knowledgeable.
That isnāt to say others arenāt. She lives in Canada and had the same hurdles etc.
Well, maybe sheāll get this postā¦who knowsā¦
Always worth a try. Sometimes they surprise us.
Have you tried searching her in other social media platforms? Many are no longer here but, hopefully they will come backā¦
Thanks. Good suggestion!
Only when they relapse ā¦ ā¦
once people get stable on a medication they generally move on and only return upon relapse.
Indeed. Hopefully they are so recovered they are no longer on social media discussing it.
Moreover, once someone has written a #success-stories-positivity Iād only expect them to respond to queries for a little while longer and then disappear. @zoology responded even after 4 yrs of writing her success story and we should be grateful for that. We shouldnāt expect someone to respond forever: writing in this category should be your ticket out of here!
Btw people should be maintaining a profile here in such a way as they are sufficiently anonymous as hard to find elsewhere?
Hi, this is Karen, and it is so refreshing to read of everyoneās similar struggles and journey to mine. You all give me great hope and determination that I should hang in there with the Topamx. Godspeed, Karen