The Vestibular Migraine & Secondary Hydrops Community
Read our welcome post, user support wiki & visit our member recommended products page

Derealisation / disconnected


#41

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


#42

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.


#43

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


#44

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


#45

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?


#46

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.


#47

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:


#48

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 ?


#49

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


#50

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


#51

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


#52

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


#53

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:


#54

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!!!


#55

not at all, zoloft made me feel worse


#56

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.


#57

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.


#58

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


#59

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


#60

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: