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Old 11-13-2008, 09:05 AM   #1
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how to stop a dystonic storm

how to stop a dystonic storm

 
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Old 11-13-2008, 03:17 PM   #2
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Re: how to stop a dystonic storm

As far as I know, there isn't a way to stop a dystonic storm. There are medications you can take when the storm is starting that shorten the length of the storm, but they won't stop it. I'll have to refer you to your movement specialist or neurologist here, because I'm a really weird case and medications have abnormal effects for me, so what may help me might not help you. (I have generalized dystonia, I assume you do also?) If you find out any good info from the doctor, let me know! My storms can last anywhere between 15 minutes and 4 hours, but I find that usually exhaustion will cause the storm to subside eventually, although its terrible to wait for that moment to come. It never comes fast enough!
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Old 11-14-2008, 06:25 AM   #3
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Re: how to stop a dystonic storm

Hi Hammy, welcome to the boards. As of yet, I have never really found a way to stop the storms from coming on. I suffer from Cervical Dystonia. When I first started having dystonic attacks in my neck, I would go to the ER and get a shot of Sedrol Medrol which is a shot of Prednisone and something else combined. Later when I was finally diagnoised with Cervical Dystonia, I was put on Soma 350mg which is a muscle relaxer. I still get dystonic attacks ever so often and these can last a few hrs up to a couple of days. After about 2 days of one, I go to the ER and get a shot of Sedrol Medrol. It well release the spasms in a matter of just a few seconds after receiving the shot. Other than that there's no other way I've found to help with the spasms. I sorry to hear of someone else having to suffer from Dystonia. I wish I could give you more adivse than this but that's it. I have been suffering from Cervical Dystonia for over 6 yrs now.
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Cervical Dsytonia- severe muscle spasms in the neck
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Old 11-15-2008, 10:17 AM   #4
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Question Re: how to stop a dystonic storm

Actually my 6 year old daughter suffered a brain injury 4 years ago, and now has cerebral palsy and generalized dystonia. She began having dystonic storms in January of 2007. At first we had no idea what they were, we called the ambulance twice and had two hospital stays and still the doctors were of no help. No one could identify what was happening. Finally in December of 2007, a pediatric physiatrist diagnosed her with dystonic attacks/storms. She gets an attack approximately every 30 to 60 days, and it is always out of sleep. They typically last 3 to 4 hours. The whole time her body is completely stiffening with her abdominal muscles pulling her forward, and she is crying/screaming in pain. I cannot imagine the unbearable pain, and as her mother I feel so helpless that it tears my heart out. The doctor has said they are very difficult to treat. We currently are on artane (which cause constant urinary infections, so we are going to taper it off) klonopin and baclofen on a daily basis. Once an attack hits we give phenobarbital and sometimes get into the bathtub with her to try to help with the pain, but most of the time it does not help. My daughter is nonverbal and can only press a communication button that tells me yes/no. It is so difficult because I cannot talk to her about exactly what she is feeling before, during or after the attack. Any information that you all can provide, since you go through these horrible attacks would be so helpful. Do you have any idea what triggers them? What medications work best for you? Have they gotten worse or better as you have gotten older? Since she cannot verbalize, and we know of no other person who suffers from these attacks, maybe you can let me know what your feelings are. Thank you all so much!!

 
Old 11-15-2008, 12:40 PM   #5
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Re: how to stop a dystonic storm

Hammy,
Sorry to hear what your daughter is going through. Most of my dystonic storms also occur out of sleep, although occasionally they happen when I'm awake completely. For me, lack of sleep precipitates the attacks most frequently, which is why some of my worst ones are on planes and in late evening (when I'm most tired). I've also had a HUGE dystonic storm during a physical therapy session. It lasted for hours and then left me completely stuck in one position afterwards for several more hours. I think my worst attacks were actually precipitated by taking a drug called Sinemet, which is levodopa/carbidopa. It's a really unexpected reaction to that kind of drug, especially since my dopamine levels are severely low (they thought this was dopa-responsive until they tried me on the drugs and everything got so much worse).

One thing I can tell you about the attacks is that when they happen, I am HOT. Sweat is pouring off my entire body from the effort of it all. It's also so unbearably exhausting, like running a marathon once and being told you have to immediately start again without a break. My heart races and it becomes difficult to breathe. I also get thirsty from the effort.

I know some people like to take something that makes them sleepy during an attack like valium or something. I haven't taken anything during an attack except that the ER gave me a tiny dose of benadryl. The benadryl made me sleepy, which helped stop the attack, but it had already been going on for 4 hours before they gave it to me.

I had a dystonic storm yesterday, which really wasn't full blown. My arms and back were shaking, but that wasn't terrible. Then it turned into a full blown storm. My whole body stopped moving, I was seized up in all my muscles, stuck in a position that made me look like an overturned beetle. But not my worst, so hopefully I have time before the next one.

Good luck.
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Old 11-15-2008, 01:23 PM   #6
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Re: how to stop a dystonic storm

Thank you for your input, it is very helpful. I know that my daughter's cheeks get very red and flushed when having an attack, which usually means she is very hot. She does have a feeding tube, so we try to give as much water through her tube in order to keep her hydrated. Could putting her in a warm bath be making her even hotter? Also, have any doctors been helpful in treating your attacks, if so, what type of doctor are they? We currently take her to a pediatric physiatrist, but I am not sure if this is the best specialty for dystonia.

 
Old 11-15-2008, 06:37 PM   #7
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Re: how to stop a dystonic storm

Hammy,
The best doctor for dystonia is a specialist in the neurology field called a Movement Disorder Specialist. They work with dystonia more than any other doctor. I highly recommend finding one of these doctors for your daughter.

I don't know if the hot baths are making it too hot for your daughter. I do know that during a severe attack, my physical therapist thought that keeping me warm would help relax my muscles, so she insisted I have a fleece blanket on during the attack. It helped minimally, although honestly, I think the biggest issue was that I was getting so unbearably hot under the blanket that once I took the blanket off the change in temperature was increasing the dystonia even more. For me, basically the blanket just made me hotter, didn't really do anything productive for my attack.

You said your daughter can answer your yes/no questions... could she understand if you asked her whether the baths made her feel better during an attack? Or ask her if warm feels good during an attack. Maybe the yes/no questions can get you somewhere, and allow your daughter to be more comfortable during a storm. Good thinking about the water. I can only drink out of a straw during an attack (and a lot of the time without an attack).

 
Old 11-16-2008, 03:12 PM   #8
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Re: how to stop a dystonic storm

Hi Hammy, different things causes my dystonia attacks and then sometimes nothing can trigger them off. I usually can tell when I getting one in my neck because my neck and shoulder gets real painful all of a sudden and then after about 30 mins of the pain the attack comes on. There's nothing I can do to stop them. I have tried Botox shots which didn't help me. I have heard of some people having success with Botox shots but you have to repeat them every 3 months. Botox shots are very expensive especially if you don't have insurance. Other then that I take Soma 350 mg 4 x times a day to prevent them which most of the time they do. Weather changes causes alot of mine especially severe weather. Also I can't do nothing that requires my to reach my arms over my head because that brings on severe dystonic attacks. I also can bend over alot like working out in my yard planting flowers because that brings on the back spasms. Then there's times I can be sitting still doing nothing and an attack comes on. I have attacks that can last for days which like I said before I have to go to the ER and get a shot of Sedrol Medrol. Sedrol Medrol has Prednisone and something else in it that will stop the attack within seconds of receiving the shot. I sorry to hear your daughter has to suffer this way, it's sad to hear such a young person suffering from this. I have also read that a drug called Sinnet used for Parkison's disease has helped some people. I wish I could I knew of something else that would help but that's all I know of. I hope you can find help for your daughter because it sounds like she is having a rough time.
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Cervical Dsytonia- severe muscle spasms in the neck
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Old 11-16-2008, 07:44 PM   #9
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Re: how to stop a dystonic storm

Hammy,
Raye was discussing a drug called Sinemet, which is used for parkinsons and dopa-responsive dystonia primarily. I've seen that many movement docs are trying other dystonia patients on it to see if they have any benefit from it. I was on it for two weeks and I had a disastrous reaction to it despite the fact that it should have at least helped me by increasing my disastrously low dopamine levels. But it made my dystonia markedly worse to the point where I could no longer care for myself at all. But apparent 99% of people have no problems with the drug.

I had another storm last night, pretty big, really painful. I managed to dial my dad on the phone as it was starting and he came and sat with me. I started having trouble breathing from pain and being stuck in a crunch. The pain got so bad after a half hour that I made my dad feed me a vicodin, which I thought would at least stop the pain. As I got drowsy, the storm faded, which was a nice side effect. Oddly, after the storm had faded to the point that I wasn't convulsing anymore, I had a very hard time speaking in more than a whisper. I must have gotten dystonic in my vocal cords. Luckily, after a few minutes, I could talk normally again.

One thing I notice, is that after every storm, I ALWAYS have to pee really badly! So I made my dad carry me without putting any of the burden on my muscles to the bathroom. I knew if I tensed any muscles I'd get stuck in that position, since I'm very vulnerable to abnormal posturing after an attack.

 
Old 11-17-2008, 07:05 AM   #10
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Re: how to stop a dystonic storm

Thanks Wallis, I spelled the name of the drug wrong. I have never tried it so I don't think it be of any help with mine due to the fact most of mine are in my neck, back and arms. I sorry to hear that you had such a terrible attack last night thank God you have your father who can help you. Do you ever take a muscle relaxer on a daily basis? My attacks lately have been in my upper and lower back especially since over the weekend we had some real bad weather here. I know if you heard about those tornadoes that touched down early Sat. morning in North Carolina but I didn't live to far away from where they touch down. From the looks of things where we live it may have briefly touched down where I live due to all the damage we did have where we live. Also I have been having alot of attacks in the left side of my back if I sit too long in one position on the couch. I hope when you see the specialist soon that he can help you or at least help minimize the attacks.
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Old 11-17-2008, 10:57 AM   #11
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Re: how to stop a dystonic storm

Thank you all for you advice. We did try Sinemet (I don't think it was Sinemet, but in the same drug class), a few years ago and it actually made my daughter's muscles stiffer and she could barely bend to sit. We had Botox shots in 2004, but they were in her ankles to prevent contractures. The botox did seem to help her. I am just not sure how they doctor's would handle botox since she has dystonia throughout her body, I have put this on my list of many questions for her next doctor's appointment. Also, I scheduled an appointment with a pediatric Movement Disorder Specialist. The first opening they had is in 2 months, so hopefully they will have some answers. Raye, what exactly is Soma, and do you take it everyday or only when having an attack? Wallis, I hope you are feeling better. I do notice that following an attack my daughter does have an increase urination too. Also, I read somewhere that during an attack if someone touches you to try to calm you, it just makes the attacks intensify. Do you find that to be true for yourself?

 
Old 11-17-2008, 12:24 PM   #12
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Re: how to stop a dystonic storm

Thank you both for your well wishes. Hammy, I certainly don't find it helpful to have someone touch me. I do know when I'm having increased dystonia, not a storm, that if someone tries to move me I get way worse. For example, I was twisting really badly in my spine and my dad tried to counter the twisting by pulling me the other way. I immediately ended up COMPLETELY twisted to the point that my chest was actually facing the ceiling, a really bad position.

Hammy, it's also interesting that your daughter got so much worse on Sinemet. It's apparently really rare according to the jerky movement doctor who prescribed it for me. They actually didn't believe me that I was worse since starting the drug.

Raye, I'm sorry to hear about the tornadoes, and the increased dystonia. I'm still waiting to hear back from the new specialist for an appointment. I haven't taken a muscle relaxant on a daily basis, I'm horribly sensitive to drug side effects, so I never imagined it would go well, but I'll consider it for sure.

Wallis

 
Old 11-17-2008, 06:12 PM   #13
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Re: how to stop a dystonic storm

Hi Hammy, Soma is a muscle relaxer and yes, I take it every day. I take the Soma 350 mg but they now make a Soma 250 mg which isn't as strong as the 350's. Also it does make my attack even worse if anyone tries to touch it or massage it. I also suffer from a condition called Reflex Sympathetic Dystropy which is a painful condition caused by nerve damage. The area that I have the attacks in are very sensitive to the touch. Between both of these conditions, they have left me permenately disabled. My left arm is frozen in the position where my left arm touches my left shoulder. The only time I can extend it out is to put my clothes on. If I extend it for any other reason then that it sends sharp pain up my arm and also causes a dystonic attack. I'm also glad to hear that you have found a movement specialist and I hope the doctor can help her.

Thanks Wallis, I'm just glad that the tornado didn't touch down here. Unfortunately, where it did touch down in two different places, it left 2 people dead. The sad part was a 11 yr old boy was killed by the tornado. He was living with his grandparents due to the fact his mother had been murdered 3 yrs ago. So this was a very sad story especially since the parents lost their daughter and their grandson within 3 yrs.
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Old 11-18-2008, 10:01 AM   #14
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Re: how to stop a dystonic storm

Raye-
It is good to know that massaging my daughter during an attack is probably making it worse. When she is having one, we feel so helpless, so our instinct is to massage her legs, shoulders, etc., just to give her some comfort. As hard as it may be to stand by, I will do or not do whatever it takes to make her as comfortable as possible (as if that were even possible during a dystonic attack!).
Also I am getting ready to call her physical rehab doctor and I am going to ask about Soma and see if it is an option for her.
Thanks for all your input, and I will be praying for you and your community during this difficult time.

 
Old 11-19-2008, 05:50 AM   #15
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Re: how to stop a dystonic storm

Hi Hammy, you're so welcome and I hope maybe the doctor will be willing to try the Soma. Especially since now it comes in a less stonger form with the 250 mgs. I have read that one cause of dystonia is due to some type of nerve damage within the muscles. I know that the area where I get the attacks are highly sensitive to the touch. I take the Soma everyday which helps keep down the attacks. So I don't have them now as much as I did in the begining. Which I've also have learn the things not to do to bring one on, on a daily basis. But I do still get them sometimes all I have to do is sneeze real hard and that can cause one. The only thing about dystonic attack is that it's doesn't give you much of a warning. So therefore, it doesn't give you a chance to stop one. I do hope this specialist helps your daughter. I have two grown daughters and hate the idea of either one of them having to suffer like I do.
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