Hello guys
Sorry have not posted in so long it’s mainly because I’m so much better as most people know I’ve had this four years now. I don’t like to post I’m better but I liked to read these stories myself last year when I was housebound with MAV.
I’m still on pitzotifen and amitriptyline combo I don’t see myself coming off it anytime soon. I put on a few pounds maybe 4-5 pounds nothing major so pleased about that.
If you are newly diagnosed well done for finding the forum and getting diagnosed so early!
I even had a drink again the other week I haven’t been able to touch alcohol in a long time three years or more but it felt good to have a few I didn’t feel any worse really but didn’t over do it.
You will take your life back again one day. I don’t feel 100% I still have bad days but absolutely nothing like they used to be I’m back at work in two weeks after my mat leave. I didn’t ever think the awful dizzys would go away I suffered a long time but I’m better now and enjoying it my MAV could get worse again but I live in hope I’m over the worse.
How are you all ? I see a lot of new members and some of the old ones not post so much now. I haven’t forgot this board or the people who literally saved me last year so thank you
Brilliant news Donna. Fingers crossed that things stay good now. Chances are they will as you said that you didn’t plan having any more children and that seemed to be the main factor in your relapse. Keep us updated every now and again xx
PS. Did you stop doing your blog… now you are feeling better I guess there isn’t a lot say these days?
So nice to hear that your doing so well it just proves what we are all told that we can get better. Like you, I am a mother of small children, I think it makes recovery even harder. X
Thanks everyone ! Jem I don’t get time like I used to plus there’s not a lot of point now I’m better as its focusing on it I think.
MM no tips really I do eat anything I want these days. Staying up late causes probs sometimes though but mainly pitzotifen that worked for me really kicked my MAV into touch as I had been on ami for years and was still getting really bad days looking back don’t know how I copes for three years feeling constantly dizzy like I did but you do don’t you. The passage of time to helps it dumbs down as time goes on.
Mornings I can still feel off balance but it’s a walk in the park really I used to wake with vertigo every single day for two years can’t believe that tbh but it’s gone now!
There is hope it can go even after 2/3/5 years I think I’m proof of that
i have had some success in the past 3 months, i started a new drug (veramipil) & it has helped. i am about 80%.
but today for some reason I got 3 dizzy spells…maybe the small coffee i had this morning or i may have turned my head too fast in the car…i dunno?
i may consider upping my dosage if it continues.
I’m really glad for you, Blondie, and thanks for sharing that. It does help, a lot, to hear that things can improve…and I’m having the sort of day where I really need to hear that.
Really pleased for you Blondie , its good to hear and also to report back. I am in a similar sitation after 2 years of bed bound dizziness, and finally getting my life back. When I first came on the forum and looked online, I could hardly walk, was suicidal and never thought it would go away. I highly recommend DR S for Mav/Dizzies who helped me get my life back. It is hard work and doesnt go away over night but it is possible to get better again!
Donna - wonderful news you can now enjoy being with your children and leave MAV hell behind! I followed your blog when I was really sick and found your story an inspiration. So happy for you after all the difficult times you coped with but now you have your lovely family am sure it was worth while getting through those dark days. It’s good to know we can make it through as well.
Barb
First of all, great news! I’m still in that stage of feeling like I will never get better… I am very interested in how your brain fog lifted. That’s the one thing I cannot imagine ever getting rid of after all this time.
My brain fog hit me along with vertigo, E Tube problems and all types of balance issues. I was diagnosed with VN. 3.5 years later the fog remains, I’m unsure if it has improved. At this point they are just saying I have a migraine variant. I am still testing different drugs, but to no avail. Some part of me feels that the ear damage has left me permanently like this, and it’s not any type of migraine issue causing it…
I just wanted to ask, how was it for you when your brain power and concentration began to improve? Did it just happen slowly and gradually? Did you have to try lots of drugs? Most important, how awesome if life without this drunk feeling? =)
I remember you too and am so glad things are going so well for you. Really appreciate you dropping by too to spread the good news. It’s very encouraging for us all.
Ahh thanks your all so nice!!! This board has some amazing members you do help people keep their sanity through this nightmare.
Aaron the brainfog was awful for the first two years but I don’t get it so much now unless I’m having a bad day. I don’t know what makes that go away I think how you deal with it is the most important thing just carry on as normal don’t let it take over your life distraction often works the best for me.
I still have MAV it’s for life I think but you can manage it a LOT even forget about it and live normally with right meds, diet, sleep etc
The drunk feeling was with me for a long time three years I got used to it but this year it has gradually faded away to a barely noticeable level.
I hope everyone on the board gets better and you will eventually you might never be the way you were before I’m not but I’m happy now I feel as normal as I think I ever will and you can live a good life at 90-95 %
Thanks all take care x
blondie - been wondering how you are getting on, assumed from the absence u were better! Great news, especially how low you felt after your baby.
Super pleased for you
x
Own it girlfriend!