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what infrared light do you use? i did not see any in the recommended member products.


Thanks! Started 75mg today. As @GetBetter suggests, I am hopping on the “monster dose” (love the term). Thanks for the support and advice everyone. I guess there is room to go quite a bit higher as well.


oh yeah, I´ve been told I can go higher… so imagine, you are on a tiny dose.


Hi Laura hows the hives ? did you go down on Effexor ?


hives are better, not totally gone, but I am only taking antihistamines once every two days (versus 3 times everyday!). I have not started the process of going down, neuro told me to wait a month with the new generic to see (150mg tablet). But since hives have gone down, I do think it was the previous generic that gave me the hives. They were all over. So maybe is not the venlafaxine itself but the generic?


Unfortunately the light I bought isn’t sold on amazon. :disappointed: If you search for “infrared” on this forum you will see my original post and there is a link to the product if you are interested. I’m also use a home-made intranasal infrared light that I also think helps get at the trigeminal nerve. I definitely look weird, like Rudolph the Red-nosed reindeer with a light up my nose! But it really helps me get relax and get to sleep, no joke. I was surprised.


I am seeing someone for a second opinion and will ask about this drug I’m actually exhausted taking all these meds now with little to no relief :sob:


Thanks so much Eric

I see a new neuro next month so I’m hoping to get some fresh ears on it . What dose of topamax are you at now ?


Did Zoloft do anything ? I’ve heard so many actually get relief from it so odd how we’re all diff


Amy…you do very well tolerating meds i think so you have several options…a lot of people get relief from Topiramate but just cant hack it…you may be able to.
It was one of the 1st drugs i tried just couldnt cope with it.
Jo x


For years since chronic MAV I felt I had to relearn balance every morning as I got up. Took me minutes to get to sitting up in bed, tiny inch by inch. As I take immediate release drug did wonder if first thing there’s none left in your system to cope. For me all this cleared completely after long long time a couple of months back. Found I could hop out of bed as I did pre-MAV. Since recent relapse/attacks it’s back. Even on meds. My attacks have always started first thing on waking. Are we more vulnerable then. Must be some reason. Helen


Yes…im the same as you Helen. I dread the first part of the morning…put it this way…i dont go to bed the way i get out of it!!!
Jo x


Thanks jo I don’t think I did I’m tbe beggining but my tolerance is higher now so will c what the second specialist says I’m just exhausted not having anyone who knows what to do with me :grimacing:


I know how you feel i really do…Nov 17th 2014 my MAV became chronic and its only recently im now on a cocktail of treatment and meds that are doing me some good…its a long hard slog!!! And then some!!!


not at all, zoloft made me feel worse


Best of luck on new dose, I had the greatest benefit once I got onto this dose, it’ll be worth the move up. Only side effect at that dose was extra night sweats but benefit of 75mg so worth it. Keep us posted.


That’s me too Joanne! Mornings are the worst, however they have gotten better than they were. The fear of sitting up in the mornings may always forever be with me… terrifying.


Yes im with you there…its the first thing i think of when i wake up. Have i got a headache? Am i going to be dizzy? Its so hard to move away from this illness
So glad you are improving you deserve it
Jo x


I’m at 50mg and will probably stay here for a while.


Thanks so much jo I’ve been an emotional wreck all week it is beyond exhausting I know you all get it thank god for this group! I’m so happy ur feeling some relief lord knows u deserve it ! :heart: