[BrianC]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #4947

Thanks Robyn. There’s lots of car head/neck supports on ebay etc. I’ve taken a punt and ordered one that looks like it might help. I have round 2 of botox in three weeks, and hoping for SOME effect this time.
Cheers

[BrianC]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #4939

Hi again Robyn.

In your reply to me on May 2, you mentioned having a good headrest for driving.

Can you tell me what you have and where it was sourced please. I’m trying out various options, and I think having a headrest that can be swapped between our cars would be useful. I’m finding that pushing my head back into the car headrest does allow both hands on the wheel the bulk of the time, but it does get tiring.

Cheers
Brian

[BrianC]

in reply to: My Corporate Memory (and life with Dystonia) #4783

Beautifully written. Your description of shaking hands and avoiding cups or glasses of fluids in stress situations … was me. Two hands on the glass was not a power look. I mostly controlled the tremors for the last 20 years of work with beta blockers, and it’s only in the last couple of years post retirement that my neck control/spasms have started and become an issue.
Good luck and best wishes.
BrianC

[BrianC]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #4615

Thanks Robyn & Denise.

I see the neurologist (one of the WA ones listed on here) on Monday, so I’ll see what he has to say.

Most of the time the “head pull” isn’t too bad, mainly when out walking or driving. I’m constantly trying new things, such as doing small regular head “flicks” to the right, which seems to avoid the head pulling down to the left. Also leaning my head slightly forward and down, then looking over the top of my glasses, seems to hold off the head pull.

These are just other sensory tricks I guess, but less obvious that constantly having to touch my face, neck or head.

My only pain currently is like a pulled muscle in my left shoulder blade which I did doing exercises planned by a physio in early February. It keeps hanging around as is affecting sleep now, Denise’s mention of finding a physio with Dystonia knowledge appeals.

Cheers
Brian

[BrianC]

in reply to: Introduce Yourself – no longer in use – Please create a new post if you wish to introduce yourself #4531

Hi members.

I have just joined after this week using Dr Google to finally put a name to my neck issues. Cervical Dystonia.

GP’s, physios, sports physiologists, etc had no clue. After raising it with my GP she has referred me to a neurologist …. I took the list of WA based specialists with me that I had found on this site.

I was diagnosed with Familial Tremors, now called Essential Tremors about 30 years ago because of hand and lip tremors, and managed that quite OK with beta blockers.

In 2002 I had a radical neck dissection for a tonsil cancer, which involved removal of lymph glands from the right side of my neck. So all sorts of nerve damage and tightness as a result, but I really had no significant issues until maybe the last 12 months.

My head turns down to the left, and really only became noticeable when driving and finding I had to constantly have one hand on my chin, cheek, forehead, etc to allow me to keep my head up and straight. So constantly driving one handed. Two hands on the wheel almost always results in the head drop and turn, and it is a real fight to get it back up and straight … momentarily. I find that by letting it drop further I can swing back up and around. Walking is becoming more of an issue now too.

I find sometimes that I think “wow I’ve had my head straight for a while”, then it’s like I’ve hit the “on” switch again.

So I see the neurologist in just over a week, and I’m looking through the masses of information out there .. and here.

Has anyone looked into the issue of jaw realignment and CD? I’ve seen a lot of anecdotal stories about apparently successful treatments. It is interesting to me because I did have jaw/mandibular issues in the early 1980’s, predating the start of my essential tremors issues.

Cheers, and thanks for having this forum.

Brian

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