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Derealisation / disconnected


#81

I think you may have hit on something here. I know MAV morphs but I’ve noticed being on meds once the 24/7 dizziness ceased, other symptoms appeared. At first I thought maybe they’d been there all along And I hadn’t noticed them but now I wonder whether whatever was causing the 24/7’s just had to come out somewhere else. System not yet ready to be ‘normal/pre/MAV but better than it was when 24/7 dizzy. Still struggling but not as much. Helen


#82

Hi Amy, I would say 160mg helped but when I added the Effexor I noticed my symptoms subside a lot more that’s why I reduced back down to 80mg of the propranolol plus I was losing hair at the 160mg dose, its not enough that we have to have this awful illness but losing hair as well it nearly tipped me over the edge! :joy:I eventually want to get off the propranolol but every time I have tried I get a migraine but I have never had another medication to combat migraines that I was taking as well as the propranolol so I’m hopeful that with the Effexor I can get off the propranolol and be down to just one med. I think with this illness you just have to go for it in the hope it works and then onto the next if it doesn’t. Good Luck let me know how you get on! xx


#83

Could I ask, and I appreciate how difficult it must be to pinpoint, what you felt the Effexor helped with more than the Propranolol. I ask because I take PP myself and am beginning to think it’s struggling to cope on its own. It’s certainly keeps full on attacks at bay. I’ve gone over three years since my last full on attack but it broke through three weeks back although thankfully not as severe as previously. Helen


#84

Hi Helen, I agree since taking the PP after my last silent migraine it definitely keeps them from coming back, the reason I suffer with VM is because I tried coming off PP and got hit with it! I would say I when I doubled the dose in May this year I felt it helped after a month of taking it to lessen the symptom’s slightly but no where near what Effexor has done, I was on 180mg of PP and 75mg of Effexor for 3 months and since the beginning of January I reduced the PP to 80mg and doubled the Effexor and feel better so I know its the Effexor working better for me the double dose of PP. x


#85

Thanks for that. I certainly couldn’t increase my PP dose any more… i’m beyond maximum already. Did you find the Effexor kicked in quite quickly. I found PP didn’t do much for me for eight months which is a loong time! Are you in UK? If so, What part of UK are you in I wonder cos out West GPs have no ideas about using Effexor for MAV. It’s PP, Ami (which I cannot take), or Sodium Valproate which I won’t take! It’s not a question of them thinking outside the box. I don’t think they’ve even found the box yet! Helen


#86

Yes I felt better within a month of taking the Effexor, then when I dropped the PP and increased the Effexor I would say I had a few off weeks just as my body was getting used to withdrawing from the PP and increasing the Effexor. I’m fortunate I’m under Salford Royal hospital under neurology and the person I see is pretty good, he’s really open to trying lots of things and doesn’t mind me emailing him to ask questions which is great. My Drs didn’t really have a clue they thought I had an infections, then a heart problem it was only by chance and the 4th visit I saw a doctor who bothered to look at my history and saw it was probably migraine related. I tried Ami it didn’t work for me, just sent me to sleep. I saw a tiny improvement in Topamax but that was all. I like the fact that with PP and Effexor you can take them long term if needed. I wish GP’s would do more training on migraines it so frustrating!


#87

So glad you’ve managed to find someone open minded and outside of the Home Counties too. Agreed. It’s so frustrating the lack of knowledge. Stupid when you realise it’s such a common condition. Taking a detailed medical history is often what will clinch it. That’s how, after twelve years of misdiagnosis, the neuro-otologist I saw picked up on it with me. Helen


#88

I agree with you Helen. Mine was intense dizziness to start with, two bouts of vertigo and severe blurred vision. Now to this detached/dreamlike stuff with floaty head and eyes. Me and Amy have wondered if we were to dizzy to notice but now I think the symptoms just change.


#89

Amy,
Wondering how you felt about your meeting with the new neuro. Did it go ok?


#90

Thanks so much for asking :slight_smile: it was yesterday I must say dr Nandi at the royal ent is very good I even rate him higher than dr s . He basically said the pitz is not working that’s why I feel so off still he has told me to wean off pitz and try ami if that does not work then probably Effexor or topirimate. How r u doing ? He explained the spaced out feeling as a result of a balance system not working correctly which makes sense :slight_smile: