constantly dizziness

Primary progressive MS
1

Hi…
I was diagnosed with PPMS 9 years ago (I’m a 55 yo male). A year later I travelled to Poland to have the CCSVI procedure, and I had minimal progression until I fell and broke my hip 16 mos ago
I’m hoping (desperately hoping actually) that someone can help me with a question… over The past 2 1/2 years I’ve been experiencing constant dizziness, morning noon and night. My balance is terrible- I can only manage a few steps without cane or walker. I know dizziness/balance issues are common with this disease, but I literally have a hard time thinking straight with the constant dizziness and sludge between my ears. I can sleep most nights, but wake up each morning with a spinning head - I know it’s not food related.
Before my long term disability I had a high-functioning career (advertising Creative Director) and also spent the majority of my spare time songwriting and recording in my basement studio (Bmus in music composition).
I can no longer play piano or guitar (much less compose anything), look at a book or computer screen for more than a few minutes before I need to close my eyes or look away. I can’t walk into a crowded coffee shop or store without being hit with a wave of dizziness (it’s not BPPV- related vertigo, which I’ve had a few bouts of but was successfully treated).
My biggest wish would be to attend our local church, but I’m unable to cope with the environment and all the people. It’s ironic that I can’t handle the thing I crave most - stimulation.
I tend to sit in a corner at home waiting for the hours to go by until I can go to bed (I realize how pathetic that sounds).
I know my pilot light is still burning… I still want to make collages, write songs, etc. - but it’s too much for me. I’m so fortunate to have a loving supportive partner and 3 beautiful kids. Most of all I want social connection. I don’t think I’m depressed (which is sometimes doctor speak for “I don’t know”).
My MS doctor tends to dismiss my constant dizziness, instead focussing on my more physical symptoms. Truly, I’m reaching the end of my rope - I don’t have a death wish… I have a life wish. I wish to get some quality of life Bach. (Took me over 2 hours to type this msg on my iPad, with 3 breaks…).

Does anyone have or know of this debilitating cognitive issue? Thanks in advance

2

I am RRMS. I have - like you - constant dizziness which is bloody awful I know. My GP prescribed Betahistine to try and control it. It seemed to help for a while but now i’m back to the constant dizziness. So - i’m back at the GP’s next Friday and i’m going to ask her to refer me for an ENT appointment. I have been told to ask about something called “Epley manoeuvre”. This takes very little time - and from what i’ve seen is just lying down and having your head held in different positions for a while. I’m told it can help in a lot of cases…it kind of resets your inner ear balance mechanism. Maybe you could mention that too? Juls

3

My initial symptoms when diagnosed PPMS were dizziness and balance issues.

A year on, they have improved 90%. The symptoms just improved on their own. I`ve only been taking vitamins as in Vit D3, Magnesium and B12.

I`m going to start taking a light dosage of Baclofen very soon because of aching legs 24/7.

4

Hi Rob , Dizziness has been a problem for me I’ve had it on an off for years but now I’ve developed mobility problems too I’ve been a wheelchair user since May 2013 , I had a very bad episode and lost most of my mobility . I’ve got some back in my home but my poor balance and weakness means I can’t walk out of my home without falling. I tried using a rollator but ended up on the floor. Do you have double vision ? Mine is awful I find that it badly affects my confidence, It’s not a great feeling seeing everything in twos. It’s worse when I’m tired or ill. I go to my church quite often and take Frazer my assistance dog , having him has helped me be less anxious . On days when I can’t go we have a phone link and I listen in. I’m still in limbo I’ve not had a diagnosis other than be told it’s functional. I’m seeing a neurologist again soon , but I don’t know if I’ll ever know what is causing my disability. I’m just trying to manage it as best as I can . Michelle and Frazer xx