Ouchie indeed!! Poor thing!
I wonder how much depends on whether/if one had constant 25/7 dizziness in the first place. I knoe you have constant rocking but @jojo65 and @nin. Not sure. Surely must be a factor. If the system isn’t quite so hypersensitive, it would settle, albeit temporarily, more often slightly easier. Helen
Very early days yet but seems very promising. Makes one wonder what Effexor could possibly be doing for you that none of the others you tried did. Be great if someone could work that one out, though don’t knock it. Just imagine you’ll be able to enjoy doing the Christmas shopping in Tesco. Well, as much as anybody can. If ‘enjoy’ is the right word! Helen
Ah jo this is amazing news !!! I’m so happy to read this long may it continue do let us know how the other half of the tablet goes but it sounds like ur on to a winner !
Helen…i think the fact that im actually TAKING the meds everyday and not hit and miss like the others because they made me ill might be helping me. You are right…its early days…ive thought is it the meds? Am i just having a half decent few days? Who knows. But i can tolerate these drugs and gonna go up to 37.5mg next week…i can only hope and pray…
I plan to go up to 37.5mg next week. Im just hoping its the meds helping and not just a fluke and im having a few days better than others…i just " feel" a little better all round…yes still dizzy and off when outside but i feel less " mixed up" does that make sense?
I understand those thoughts BUT small changes and improvements that’s wha to believe it’s a good sign so hopefully it only continues
How are you Amy?
I’m okay my light sensitivity and aura are still mostly gone but that’s all so far no more change it’s only week 5 but I am a little unsure what to do . I feel under the conclusion that a drug is meant to stop all symtoms in 6-8 weeks maybe that’s wrong . Prob will go up a dose and hope for the best
The drugs are considered successful if they stop 50% of symptoms not counting breakthroughs. Once I decided consistently feeling 85% of whatever normal is was enough for me, I became a whole lot happier. I don’t ever expect symptoms free. I’ll take bit by bit progress.
I think this is the crux for both coping and mental recovery. If you are a bit better every 6 months that’s huge and you can deal with it. It gives you all the hope you need, arguably.
I agree 100% I don’t feel anywhere near 85% and I’m wondering how long or how long a med should take to take me there . How long did it take for Effexor to get you to 80%? X
Bit of a delusion that one I’m afraid. I remember getting a so-of diagnosis eventually, being told to take preventatives - inaptly named when you really think about it I suppose - and thinking ‘Great, Take pills and be better in a month!’ What an ignoramus I was!
The doctors considered preventatives successful if they reduce frequency, duration and severity of symptoms by 50%. Maybe they should be renamed ‘reducatives’?
Depends what drugs one takes. I’ve read papers saying plp should see progress with Ami within a month. Propranolol six months! I bet there’s more than one on this forum who would contradict either of these statements from personal experience too. All so individual. Helen
@GetBetter was quoting some cases where they’ve become 100% on meds, but can’t give up the meds or they slip back.
I know of a couple of old boarders who are 100% without medication but they’ve not been on for the longest time. It’s hard to say how common these people are.
A few months, though if I get lax on lifestyle I back slide. I’ve lately toyed with going up to 50 mg because I’ve been feeling worse than I had been. I think I was feeling really a lot better, got overconfident and forgot myself. I’m working back into a stricter diet and exercise routine. I’ll reevaluate in a month.
I was speaking only from personal experience. I’ve had MAV symptoms my whole life. This is genetics for me. Preventative meds make up for gaps in my biology.
85% sounds pretty darn good compared to the alternative.
I remember the -12% months, i’m sure you’ve had them
Emily…i can see me doing exactly the same thing as yourself…feeling a little better and overdoing it when the goings good. Im going to try and not fall into that trap…plus i’ll get my hands slapped off Helen.
There are other factors that must affect recovery surely. How badly one was affected, how long undiagnosed maybe. Anxiety. Consultant, Dr S? Told @sputnik2 I think it was because she’d had it a long time it would take long time to go away. I think 18 months was mentioned. In that Lauren Kossack blog she was told same applied to her recovery. She was ‘diet only’ but was told she need to maintain the diet for a duration to equal her illness duration. Personally I’d say it seems those who mention having been bedridden with it suffer longer which woukd be logical because their balance was temporarily completely knocked out. I sure anybody whose MAV gets picked up before it becomes 24/7 should recover quicker because it was caught before it was unable to reset itself. Helen
I agree Helen it’s jsut I’ve searched this site and sooo many on jere do claim to be 80% after 6 weeks on meds which I find very disheartening .
I do agree with a reduction however you continued to improving on prop over time ? So I guess it is individual I would say pitz has reduced but I guess maybe dr s will have to add something else in or I go up in dose