Factors and actions that make your dystonia symptoms worse or better.

[AlecB625]

Dear All,

Will you please share info on what makes your dystonia better or worse.

In my case the worst spasms ( neck and abdominal muscles) happen when I try walking (even a couple of steps). Turns me into the hunchback of Notre dame))

Another aggravating factor is any action that involves arms and shoulders. Would never have thought I would struggle doing simple things like cooking, eating, showering, shaving, etc, but here we go.

If I lie down the symptoms disappear almost immediately.

What is rather interesting is that when dystonia symptoms first manifested 4 years ago, it was the other way around. For the first 18 months or so I struggled to fall asleep because of the neck spasms, but could walk for miles symptom free! This illness is truly enigmatic...

Thank you

[ITGuy1]

Hello Alec,

for me the things that aggravate my dystonia are:

Long walks on hard pavement / asphalt

(Hiking on softer, sandy trails doesn’t affect my dystonia as much i’ve found)

Lifting heavy objects

Stress / social anxiety make the tremors worse

Rubbing my upper back (like a massage) really sets off my tremors.

I’ve learned that the back muscles are just as involved in dystonia as the neck and shoulder muscles. Even sitting on certain kinds of chairs will rub my back the wrong way and make the tremors worse.

Have you tried botox ?

In my case, botox, meditation (to reduce stress and learn to relax muscle tension) as well as hiking on softer trails have been the best treatment for my condition.

The hiking strengthens my back, and leg muscles without aggravating my dystonia as much.

[AlecB625 in reply to ITGuy1]

Hi! Unfortunately I am one of non-responders to Botox, had 10 sessions so far, little or no benefit...

[ITGuy1 in reply to AlecB625]

Did your physician use EMG guidance for the botox shots ?

It’s a thingy that makes noise when it gets close to overactive muscles, so it helps the dr know where to inject the botox more precisely.

[LewesGuy]

Hi! I just today joined healthunlocked and this is my first post. I have cervical dystonia and am successfully treated with Botox. What makes it worse:

When the Botox starts to wear off (typically about 15 weeks after receiving the injections).

Being tired.

A psychological factor -- If I think about the dystonia, then it seems to become worse.

[NUTZ in reply to LewesGuy]

Yes I find thinking about dystonia can make it seem worse.

Perhaps some kind of distraction,,,,listen to music...watch a film/dvd...playing chess..

Tiredness certainly won't help. Before you were diagnosed with dystonia did you feel tired for long periods of time?

Trusting the botox will continue to be beneficial for you.

[Muscari]

Hi Alec. Fatigue, stress and cold weather are all triggers for my Dystonia. Trying to do fine, detailed movements with my right hand also aggravates it because I get so frustrated!

Not much really helps to stop the spasms, other than lying down so my body is supported.

[Hidden]

Dystonia ..plain n simple sucks,sorry but..im a med mess n this by far is the worst of all of them

For me..stress,no sleep,pain,ignorant people to Dystonia are triggers.

My spasms n cramping make me look like a t rex sometimes .

Medical marijuana is the only thing that helps all of it n lets my body relax n lets me take a deep breathe n say..i can get through this.

[Hidden]

Hello,

I have Cervical Dystonia and find stress and lack of sleep makes my hand and head tremors worse.

I have just started with botox. I have only had two sessions and my third was to be in May but this has been cancelled due to coronavirus. The first session I saw the benefits but the second session I haven't noticed any changes but not too sure whether this is down to the situation we are all in at the moment.

[Lucybarker]

Hi Alec

I have found recently that for me the epilepsy diet really helps cut down the tremors and intensity of the spasms. And eating very high carb foods massively increases the intensity and duration of the spasms.

It is a pain as I do love a slice of toast, but a week ago I had a carb binge (bread, biscuits, chocolate etc) and for a few days after the spasms were so extreme it really scared me, I sometimes thought I might break my neck my head twisted round so much, and trying to get to sleep at night because of the jerking and tremors was upsetting and frustrating.

So I am back on the epilepsy diet and everything has quieted down again. Not a cure but takes the edge off things, for me anyway.

I am also using Dr Farias’s brain plasticity exercises. The jury is out on that for me but I do find if I don’t do the exercises for a few days then I seize up again. So I am going to kee going with those.

I’d be keen to hear if anyone else has tried either of these? For me botox has never worked sadly.

All best,