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Old 11-02-2008, 09:58 PM   #1
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Dystonia

Hi does anyone else have dystonia? I have generalized dystonia with no known gene mutation. I possibly have dystonia secondary/combined with mitochondrial disease. I haven't been able to find a medication that helps me, and I can't tolerate the pain of botox injections due to the severe level of my dystonia (the needles can hardly get into my muscles because they're so tensed up). My dystonia is constant in my legs and feet and still episodic in my arms, neck and face. I have pretty constant dystonia in my trunk too.

Just looking to speak to some other dystonics
Wallis

 
Old 11-04-2008, 07:07 AM   #2
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Re: Dystonia

Hi Wallis, I suffer from Cervical Dystonia which is severe and uncontrollable muscle spasms of the neck. I've tried Botox shots as well which basicaly a waste of time for me. The muscles in both sides of my neck are hard as bricks and there's nothing that will help relieve the tension in them. My muscle spasms also run at times run down my back and leave in a bent over shape and have to end up going to the ER for a shot to relieve the spasms. Between the Cervical Dystonia and another condition I suffer from called Reflex Sympathetic Dystrophy, it has left my left arm in the position where my left hand touches my left shoulder and is frozen in this position. I've been suffering from both for over 5 yrs now and it was tough losing use of my arm and I've also lost most of the use of the other as well. The weather also can be my worst enemy because it can bring on such muscle spasms in my neck that it causes my shoulder to raise up to the point it touches my ear. I currently take Soma to keep the spasms under control which it pretty much does. Sorry to hear someone else has to suffer from any type of dystonia because it is a very painful condition that can leave a person permenantely disabled.
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Cervical Dsytonia- severe muscle spasms in the neck
Arthritis

 
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Old 11-04-2008, 10:27 AM   #3
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Re: Dystonia

Hi Raye,
Thanks for your response. Sorry to hear you have dystonia too. I guess I never realized that the muscles in my neck are hard as bricks either, probably from dystonia. I've lost some of the functionality of my arms from a combination of dystonia and from using crutches and wheelchair for so long. I have very limited range of motion. I know when my arms get dystonic I'm basically in the same position as you... the left arm draws up and gets stuck against my shoulder with my hand curled, and my right arm generally gets stuck somewhere near my head. It's tough when the dystonia kicks in all over my body because I can't move anything and have to be carried to my wheelchair.

I've gone to the ER a few times for severe jerking of my limbs. There's some speculation that 15mg of benadryl actually stops the spasms because it reduces acetylcholine levels. I'm not sure whether it works for me yet, other whether the drowsiness stops the spasms, but I keep some with me at all times anyway.
Wallis

 
Old 11-04-2008, 05:44 PM   #4
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Re: Dystonia

Hi Wallis, the way you described that your arm and hand gets when you have a dystonic attack is the way mine is permenantely frozen. I know it must be hard on you to have dystonia in your legs as well as your arms. My heart goes out to you because dystonia is not an easy condition to live with. Especially since we never know when one of the dystonic attacks will come on. When I get a dystonic attack in my neck it causes my head to turn to the left and my shoulder raises up to point they're touching. One of these attacks can last for a few hours or up to a whole day. When I go to the ER they give my a shot of Sedrol Medrol ( I think that's how it's spelled), it contains prednisone and something else. Whatever it is, it don't take but a few seconds for it to work and the drawing up to go down. Also my left shoulder is raised higher than the other and my shoulders are drawn inward in the front toward my chest. It kills me to straighten out my shoulders like yesterday when they did an X-ray of my chest. Both of my shoulders are now hurting badly due to having to straighten them out yesterday. Also all this coughing and sneezing from this cold hasn't help either. I have seen times that I have sneezed so hard that it has brought on one of those bad spasms in my neck. I've never tried Benadryl for the muscle spasms. Have you ever been given a shot with Prednisone in it to relieve the spasms? If not, maybe you can ask your doctor about it, I know they have brought my spasms down within seconds of getting the shot. I was also wondering, do you take something everyday to help reduce the muscle spasms? Do you take anything like Valium, Soma or Bacaflon?
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RSD (Reflex Sympathetic Dystropy)
Cervical Dsytonia- severe muscle spasms in the neck
Arthritis

Last edited by rayefaye; 11-04-2008 at 05:47 PM.

 
Old 11-04-2008, 06:29 PM   #5
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Re: Dystonia

Hi Raye,
I've never tried solumedrol for my dystonia although I do take prednisone for other conditions. As far as medications I take daily, I used to be on baclofen but I couldn't tolerate the side effects of it. My doc is talking about trying a baclofen pump if I can't tolerate the botox shots. I'm on tegretol for seizures, which I know can help dystonia. I tried Sinemet (levodopa/carbidopa) but it has the reverse effect on my dystonia, and makes it WAY worse. The same thing happens with Klonopin and Ativan. I have Valium, but I haven't experienced any benefit from it on my dystonia.

I have the exact same dystonia in my neck! My head usually goes left and my shoulder lifts up. It's so strong that I swear my ear is trying to go THROUGH my shoulder. I also get REALLY hot during a dystonic storm (attack) especially when I start jerking uncontrollably. I also get dystonia in my face during attacks, which isn't fun. My facial muscles pull either down like a stroke, or upwards kind of like elvis. Then it starts spasming.

Nice to have someone else to talk to! By the way, are your fingers curled up tightly? My feet are and I wondered how you keep from getting infections between them?
Wallis

 
Old 11-05-2008, 06:48 AM   #6
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Re: Dystonia

Yeah, my fingers curl up too and I also get real hot when an attack comes on. I can usually tell in my shoulder because right before an attack my shoulder go to hurting real bad at the top and down my back. I know what you mean when it feels like your head is going to go through your shoulder. I haven't had any infections between my fingers or hands in along time but my hand stays real dry. I did have a problem with my arms and hands breaking out with these itchy red bumps and the doctor gave me this cream called Triamcinolone Acetonide to help with that. I also use the generic brand to the Eucerin brand at Wal-Mart to help with the dry skin. It comes in a jar and it costs about $4 compared to the $12 brand, it a real thick cream that helps alot with the dryness. I hope that maybe the next round of Botox shots may help you but I know there's not a real good chance once the muscles become to tight. So hopefully, if they do give you a Baclofen pump that hopefully they will help you more than the pill form. I take Soma 350 mg 4 x a day. I also take Neurontin and Norco due to the nerve pain from the RSD and Celebrex for arthritis. I have read that dystonia is possibly comes from nerve damage within the muscles. If so, then the probably on of the reasons the Neurontin helps along with the Soma. I'm also glad to find someone else who suffers from Dystonia as well because it's a very rare condition like RSD that doesn't effect alot people like other conditions.
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RSD (Reflex Sympathetic Dystropy)
Cervical Dsytonia- severe muscle spasms in the neck
Arthritis

 
Old 11-05-2008, 09:37 PM   #7
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Re: Dystonia

Well I woke up this morning to find out my dystonia is progressing. My neck and shoulders are completely frozen and my arms are getting harder and harder to move. All of my fine motor skills are getting clumsy too. I called the doctor, and she told me dystonia is unpredictable... She also doesn't want to start any more medication right now because I keep having unexplainable reactions to the medicines we try. So I'm worried about losing the use of my arms on top of the loss of the use of my legs... It's so quick for me. :/

 
Old 11-06-2008, 06:38 AM   #8
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Re: Dystonia

I'm sorry to hear about it progressing into your arms and neck. I can understand your dilema since I've already lost the use of one arm and only have about 30% usage of the other. So far I haven't had it progress to my legs but I have had it progress to my back. The doctor is right about it dystonia being so unpredictable because I never know when I'm going to get the next attack. I mean I have been just sitting still doing nothing and all of a sudden out the blue it can attack my neck and shoulders or my back. I do hope they can figure out a way to help you from losing the use of your arms since you've already lost the use of your legs. I can still do with my hands but not my arms. I know my family is very helpful and sympathic. But it's very hard to understand how painful these attacks are and how powerless they leave you. Also to know you can do the things that you use to take for granted unless you actually have to live with dystonia. I seen a many of day I've cried from the pain and the fact that I've lost the use of my arms. I don't really get depressed, I really get angry at the fact that I can't do the things I use to be able to do. I guess that's what gets me through all this and the fact I still try to do things even though I know I can't. Then this ends putting me in more pain and brings on more spasms and then my husband fuses at me for knowing I can do them anymore.

I wish I knew what to say to you but I don't. We're dealing with something that even the doctors don't know how to fix. So all we can do is bide our time and just hope it doesn't progress and get any worser than it already is. Which we know there's a big possible it's only going to get worse and there's nothing we can really do to stop it.

I was also wondering how long have you been suffering from dystonia? I've been suffering from it for almost 6 yrs. now.
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RSD (Reflex Sympathetic Dystropy)
Cervical Dsytonia- severe muscle spasms in the neck
Arthritis

 
Old 11-06-2008, 07:06 AM   #9
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Re: Dystonia

Hi raye,
have to keep this short because my hands arent working too well. I got worse again today. But to answer your question... I started having problems when I was 11, nearly 12 years ago, but i didn't know it was dystonia then. I really started getting bad like 3 years ago, and getting REALLY bad about 6 months ago. I went from using crutches to wheelchair bound in only a couple years. It's been really tough. I dont get depressed either, but I do get scared from time to time.
W

 
Old 11-07-2008, 05:49 AM   #10
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Re: Dystonia

I'm sorry to hear this Wallis, from what I gathering your age is around 22 or 23 yrs old. If so, you're around my oldest daughters age which is 22 yrs old and she will be 23 in Feb. '09. If this is your actual age then my heart really goes out to you because you're so young to be suffering from such a horrible condition. I just don't what to say especially if you're that age.
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Cervical Dsytonia- severe muscle spasms in the neck
Arthritis

 
Old 11-07-2008, 11:54 AM   #11
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Re: Dystonia

Hi Raye,
Yes, I will be 23 in August 09. The good news is that I'm going to fly home to NY and see both a movement disorder specialist and a mitchondrial specialist asap. My shoulder is now permanently stuck up, my head intermittently is pulled to the left side, but the shoulder is constant... It's amazing and scary that this happened over night. But I will at least strive to figure out what's going on with me. And I've always got the service dog to keep my spirits up.

What do you do for that horrible headache that comes from neck and shoulder dystonia? I succumbed and forced myself to take vicodin the other night, but I don't like doing that.

 
Old 11-08-2008, 05:52 AM   #12
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Re: Dystonia

Hi Wallis, that is good news that you're getting to fly home to see a movement specialist. Hopefully, the specialist will be able to help you especially since you're in the early stages. Where I live out, I would have to drive over a hour or more to find such a specialist. There's not any such specialist where I live because it's a real small community with limited doctors. I'm also glad to hear you have a service dog to help you, animals can be real helpful when you're disabled.

As far as the headache's are concerned, there's not much that help mine. Sometimes asprin helps with the headaches. Most of the time, I have to lie down and just rest. Also sometimes when they get real bad from where the muscles are so tense in my neck and back, my husband massages my neck and back. The massage helps out a whole lot if you can find the right place to massage. I have had the muscles so tense nothing works, so I end up at the ER getting a shot.

I really hope the specialist can help you out especially since you're so young. It saddens me to know you're so young and have to suffer from dystonia.
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RSD (Reflex Sympathetic Dystropy)
Cervical Dsytonia- severe muscle spasms in the neck
Arthritis

 
Old 11-08-2008, 10:10 PM   #13
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Re: Dystonia

Raye,
I hope the doctor can help me too, at least with my upper body. Then I can at least transfer from my chair more easily. The doctors are talking about deep brain stimulation because of the severity of my disease, although I'm not too big on the idea yet. They also might to a baclofen pump. I'm pretty sure that I'm going to have a muscle biopsy to figure out if my dystonia is primary or secondary to mitochondrial disease (although its hard to tell if the mito is secondary to the dystonia also). But it doesn't change treatment too much.

I'm really having problems with my back. It's really twisting and hurting my ribcage and neck more. I'm starting to have pain with breathing. I don't know what to do about that either. I hear that a dystonic storm can come on in a few weeks, I'm worried that's why things are getting so bad so quickly, that I'm having a dystonic storm. Apparently it will stop you from being able to breath and require a ventilator. I hope that's not where I'm headed.
Keep well.
Wallis

 
Old 11-09-2008, 05:59 AM   #14
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Re: Dystonia

Wallis, I sure hope this doesn't happen to you either. I will keep you in my thoughts and prayers that is doesn't get any worser than it is now. I have heard of the deep brain stimulation and I can understand where you're coming from. From what I read and have seen in a report on the news one night, this is a scary thing to try. Hopefully, it won't come to that and maybe the Baclofen pump will work. I know myself and I don't think I could subject myself to the deep brain stimulation either. I hope they can figure out a way to help you soon because I know from experience that you're really suffering. These dystonia attacks are very painful and to have them in some many areas at one time, is got to be excrutiating. I really hope the doctors in NY can help you soon.
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RSD (Reflex Sympathetic Dystropy)
Cervical Dsytonia- severe muscle spasms in the neck
Arthritis

 
Old 12-15-2008, 10:26 PM   #15
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Re: Dystonia

Hello, I saw your post.
I am trying to find out as much information as I can. I was recently diagnosed with dystonia when I try to write my hand won't let me. I've been having twitching and spasms all over. My legs are really bad at night-they tense for for about a minute (they say its restless leg syndrome). I'm sorry to hear that you have it so severely. I have it in my eyelids and my dry eyes make it really bad. I'm worried I will be one of the people that one day I won't be able to open my eyelids because of the spasms. The twitching all over my body I'm dealing with-its my hand I'm having problems with. Again, I know I do not have it as severely as you, but there is not much information on this disorder or disease.

Thanks for listening.

 
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