Question of the Week for everyone: Does the weather make a difference in your Dystonia?

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Permalink Reply by beka on June 17, 2008 at 12:10pm

Hello to Everyone -
This question I have to respond to. Simply can't keep quiet about this hot topic. Personally , for me, I do think that weather does play a role in exacerbating symptoms. Last week it was in the high 90s here in NYC. You could fry an egg on the sidewalk. Humidity was high. Even though with the DBS system programmed, it was like I never had DBS placed. Symptoms came back with a vengeance. Scalding back of the head "occipital" pain, at times it felt like I had reverted back 20 years ago when dystonia first started. My head and eventually the rest of me became immobile.
I called my NPs' office and apparently alot of movement disorder patients had been calling her about feeling terrible and meds not working for them.
Her advice was to stay in doors- lucky ole me I livein the hottest apartment in the building- use air conditioning, cool off, keep hydrated, take your meds as prescribed, remain in a neutral position which was flat in bed for me, and ice the area 20 minutes on, 20 minutes off.
I never thought I would make it thru last week. Once the humidity cleared, so did my symptoms. And DBS retook effect.
Today my muscles feel stiff as it's humid out there again, but supposed to cool off later in the week.
Back to ice packs for now !!

What's your experience been ? Winter seems better - may be it's the scarves I wear as a mechanism for sensory tricks that makes symptoms better in that season !!

beka
www.care4dystonia.org

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Permalink Reply by sisdailey on June 20, 2008 at 4:25pm

Hello Beka:
I have cevical dystonia and live in Tennessee. We have a varity of weather here. I think the humidity has a lot to do with my symptoms. When the humidity is high I am at my worst. I can usually tell when it is going to rain because my neck begins to act up. Also with the cold weather it makes a difference for me. So I think the humidity and pressure has an effect on my dystonia. To get relief I usually have to lay in bed until I feel get back to normal.
sisdailey

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Permalink Reply by Ernie on June 20, 2008 at 1:04pm

Hi Ellen (and everyone else),

We have noticed over the years that climate plays a huge part in how my wife feels. She feels much better in warm, humid climate and worst in cold, dry. Therefore, wointers in Iowa tend to really wreak havoc upon her muscles. We really strted noticing the difference when we'd make a trip to Florida in the winter and she would almost immediately feel better just getting off of the plane.

I think that what is more important than just the climate is the stability of the climate. When there are rapid changes in temp and humidity, that tends to exacerbate the symptoms as well. Fortunately it will be a warm, humid weekend.

Ernie

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Permalink Reply by Ray on June 20, 2008 at 5:21pm

Hi.....I live in a very hot dry climate, Central California. I find that I am better in the very hot months, we don't have humidity, it is like 10 per cent, but it hits 105 or better on a regular basis.

Ernie what part of Iowa? I lived in Des Moines for many years and use to work for KRNT Radio and TV, Channel 8 CBS.....also graduated from Drake.

Ray

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Permalink Reply by beka on June 21, 2008 at 2:53pm

Welcome to the Forum - Ernie.

Why don't we just all ask God to turn the world weather upside down to benefit us with dystonia ???

Simply do not do well with weather changes or thunderstorms !

beka

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Permalink Reply by Robin Wood on June 28, 2008 at 11:21pm

I'm with You on this one Beka; I've been putting out prayers request this past week for the humidity and dew points to go down.

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Permalink Reply by Richmanarnp on September 13, 2008 at 8:45am

Odd thought - try living in Florida where the humidity changes every hour - and recent tropical activity. Do you think this could have caused the recent exacerbation? Symptoms started to return on Monday - the day Ike was closest to us????
Tracey

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Permalink Reply by monty007 on June 28, 2008 at 10:46am

I find that the barometric pressure has a lot to do with my dystonia, drastic changes or even daily changes can produce more tremors. Being in crowds also triggers my dystonia. I had so many people who stare at me (because my face on the left looks like i had a stroke and my face pulls down into a frown) that my husband made me some business cards that say " I have dystonia which is a movement disorder and if you would like to ask questions please do. But please don't STARE"

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Permalink Reply by Thorns on June 28, 2008 at 1:57pm

I find living in Canada the weather has such extremes that I've become a walking Barometer, it can be a nice day and my neck and back is out of control and I can predicted we are going to get some kind of storm, weither it's rain or snow. Sometimes it just a drastic change in climate, living near Lake Ontario we get constant changes one day it can be 100 degrees and the next day it can be 60 degrees in the summer to 30 degress to 50 degress in winter. I used to suffer from migraines with the change of weather also, when this would happen I'd be hold up in my bedroom with light's out and as little noise as possible and than I got a medication called Imitrex which was a miracle drug for me, it took about 2 hrs. to work but it saved me alot of grief.
I started to get botox just in my brow and haven't had a migraine since and I no longer need the Imitrex, one less drug to take. Thorns

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Permalink Reply by Ellen S on June 28, 2008 at 10:35pm

Thorns,

I wish you'd go into the Migraine group and tell about your experience. I think there are a lot of correlations between the two. There are a lot of dystonia patients with migraine, but I suspect most of them have some sort of spinal involvement.

Ellen

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Permalink Reply by Ellen S on June 28, 2008 at 10:42pm

I like the card idea. :)

If it wasn't for appygal (Barb) I probably would never have accepted my Diagnosis of Dystonia.

I took my dog for her to groom and noticed her neck. I didn't try to hide anything, I just asked her about it (I'm forward that way I suppose). I know I have always appreciated people asking vs. assuming or staring, so that's how I treat others.

Anyway, she told me her story. It got me looking and I still didn't really accept it entirely (still don't) but having someone else to talk to about it has made a huge difference for me.

Maybe one time you talked to someone about Dystonia it made a difference too.

This is how we change the world... one person at a time.

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Permalink Reply by Robin Wood on June 28, 2008 at 6:21pm

Weather definetely effects my Dystonia, although I've yet to understand why and am very happy to see someone ask this very question .. Thank You Ellen :)

I live in the desert, Lake Havasu City, as my dystonia continues to progress the monsoon seasons are becoming harder and harder on me to get thru. When the air is dry I do ok but from now till mid Sept I am one twisted contorted spasmodic mess. The spasms are relentless.

This past April I went to FL to visit family, one morning I awoke and I'm talking as soon as I lifted my head, to full blown body spasms and tremors. Could not understand why because nothing had changed from the previous other 3 days, nothing that is except the weather, a system came thru. I was down that entire day, couldn't walk, couldn't see, my head had fallen, my tremors were going full force and then about 7 pm that night everything just started to subside and when I checked the weather again the system had come and gone and so had my spasms, gone as if they were never there.

One thing I notice about spasms triggered by weather; they are a lot more painful and more intense in their nature, much like spasms that are triggered by stress.

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