Crash after doing so well

I’m a MAV patient with continuous disequillibrium and dizziness for 2 years solid. I have been on Nortrptyine since January trying to find a suitable dose. My VRT therapist has encouraged me to challenege my sympoms by going out and about. Whilst I am not doing VRT at the moment, I have over the past 3 weeks been able to go out and about to different locations. However once again my symptoms have sunndenly got worse, all the usual plus the flu like aching that is also characteristic of my MAV. Does anyone know why after oding so well this crash occurs? It could take 6 weeks for my brain to calm down so I can go out again. Do I take it that the Nortrptyline is just not working?

I am so sorry to hear this. remind me, what dose are you on? can you increase, maybe? If you got well once, you will again. please hang in.

That can be so disheartening, I found it even frightening, when I experienced it.

Asking for feedback was one of the best things you could do. I certainly felt worlds better when, after a recent relapse with new symptoms, I hollered and heard from others (Hannah especially) that my experience was familiar, and I could reasonably expect it to be temporary and manageable.

I can’t explain why but something similar happens to me. When ever I push myself I pay for it sooner or later. I usually do better while I am pushing myself but when I finally let myself relax, I need a lot of down time. Fortuantely, my wife is good at scheduling down time for me these days and keeps me from pushing myself too far. I find that I can do a little each day without paying a heavy price, but if I try to do to much in one day, or multiple days, I will eventually require one or many days to recuperate. The problem is that I can’t identify when I am pushing myself because I feel so good and I simply forget. :roll:

— Begin quote from “MAVLisa”

I am so sorry to hear this. remind me, what dose are you on? can you increase, maybe? If you got well once, you will again. please hang in.

— End quote

I’ve tried everythuing form 10 to 70. Am currently on 20 mg.

Thanks for the replies. It is frustrating because each time it seems as you say as if everything will be ok this time then bang. There might be somthing in being very disciplined about the time I allow myself then go home.

That has happened to me also numerous times and eveytime it does it just gets worse everytime!
I totally sympathise with the disequillibrium I have only had this a handful of times but it has always happened after I have done too much aswell and its a awful symptom one of the worst ones.
Dizziness is like my barometer now when Ive done too much I pay big time and the dizziness is there reminding me .
Take this as a means to slow down a bit , you will get back to where you were I always have. My longest relapse was about 6 weeks and I did feel myself coming out of it slowly but it took a while. I too suffer constant symptoms but sometimes they are so mild I hardly notice them and then I have big flare ups things will settle again they always do . Try not to be dis-heartned by this set back a positive attitude helps things a great deal although I know its hard sometimes .
I was speaking to this one lady who had vertigo 24/7 for 3 years she was disabled and now shes 100% again and said its 7 years down the line she forgets how ill she was and takes health for granted again . Remember nothing lasts forever this too shall pass .

Fiona - if you can elaborate on why you tried 10-70, and ended up on 20 I would greatly appreciate it. thank you so much

My neuro otologist started me on 10 in January. The advised me to up the dose every 10 days by 10mgs until I felt some relief. he remarked that it could take as high as 70 before I felt some difference. So although I felt slighly better or at least no worse at 20/30 I kept going to 70 expecting complete relief from the symptoms . But this didn’t happen . Higher dosage made me feel signifiacntly worse. So he advised me to go down to between 10-20 mgs. This has taken me some while because I find the withdraw smyptoms pretty bad, throwng up , feeling faint etc. I am not certain now if the feeling of improvements I felt three weeks ago was due to the tablets or just a return to my baseline. I might add that all previous meds have made my sumptoms far worse.

Fiona - thank you for filling me in. I am so sorry to hear that you got so ill when dropping the dose. how quickly did you go down?

Hi Lisa,

I began coming down 10mgs at a time but I felt so sick , I came down 5mgs at a time. I’ve stopped at 15 and am now starting VRT very slowly but must admit it is as before exacerabing sympoms. Heigh Ho . Feel rough if you do…feel rough if you don’t.

Fiona - I am so very sorry to hear.