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New name for shakes


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Okay at the DYNA Summer Chill Dr. Grubb said in his lecture that most of the community are now agreeing that the hypermobility we have (at least those of us that are kids with this, I don't know about the adults) isn't really considered a form of EDS anymore, since they've re-worked the categories of Ehlers-Danlos Syndrome. They're now trying to all call it JHS--Joint Hypermobility Syndrome.

Well, my parents and I were talking while at the Chill and many of us kids get the shakes or tremors or muscle spasms, whatever you want to call it, but they're NOT actually seizures for most of us. We ended up describing it more as full body muscle spasms and that is basically the way my doctor described it too. So we've decided to call the shakes I get, which happen to just parts of me and to my whole body at different times, FBS--Full Body Spasms. What do y'all think of that name?

We noticed at the Chill from Dr. Grubb asking us to raise our hands about who had EDS/JHS and from talking among ourselves about this later, that most of us have EDS/JHS, FBS--the shakes/spasms/tremors, and most of us are ADD or ADHD too, I'm ADHD. Does this relate to anybody else out there for a majority I'm wondering. Would those that respond mind putting which, if any, of these that they have and what type of dysautonomia they have. Most of us at the Chill had NCS or POTS, I have both.

Thanks, y'all. I'm wondering how this will turn out and if it turns out the way I think it will I'm going to talk to my doctor about the results.

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Hi Unicorn,

Thank you for sharing this information with us. I guess I have this symptom because they told me I have seizures (but not epilepsy) or intense tremors. When I get that all my muscles are contracted and I can't move a bit voluntarily and I shake as if a was frozen cold. This last for about 10 minutes. Do the doctors know what causes it?

Ernie

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Hi Unicorn

Me too!! When I was sick in April I had what they called "non-epileptic seizures" because they found nothing on my MRI and several other tests. That is very interesting because that really scared me and my family when it happened. It also hasn't happened since and hoping that it doesn't

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Ernie and Sue,

First, Sue, you're lucky, I get them all the time. Ernie, you described exactly what it feels like and what it does. As for what's happening/the cause, here is the way my doctor explained it and it makes sense to us, and my dad used to be an EMT so he agrees with this theory.

The nerves in the nuscles are firing involuntarily, the same way the rest of the ANS messes up. But since it's the ones pertaining to the muscles, it causes them to move without us being able to control them. We shake the way we do because the muscles are being told to move in many directions all at once and they can't do it. It's like when a remote control car gets smashed or bumped too hard a few times, it's trying to go one way and the controler is telling it to go another and it's getting all the signals at once and trying to go in all directions at once. So it sits there going in circles or back and forth without any real control. Does this make any sense to you the way I explained it? I hope so! :)

Ernie and Sue, you're right, they're not true seizures, but they're not the kind of shakes/tremors that people with Parkinson's get either. They don't really have an exact idea as to what causes it, the same way they don't really have exact proof that the ANS messing up is what causes all of our problems. But that's the closest they can get.

Mine last from a few seconds for the really easy ones to many minutes for the bad ones. They can be just parts of me, like an arm, or my head, or my whole body. They can be easy, or the muscles can get REALLY tense and hurt really bad with the bad ones. If you are able to notice what's happening to you while it's going on, if you get the ones that tense the muscles up really bad, that's usually the peak of it for me, it goes back downhill and starts getting better from there on. Afterwards my muscles are really tired and hurt ery badly. It hurts to move for a few minutes afterward and I'm usally too weak to move during that time too. After I stay still and rest a bit, I'm okay again. I hope this helps y'all.

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Thans Unicorn for giving the explanation. What you explained makes sense.

I went to see a few neurologist and nobody so far as figured out was causes it. This is my main symptom besides the syncopes.

I am going to see a muscle specialist in October and I would like him to find the cause (I believe in miracles!). I would also like to have a medication to stop it , because the complete paralysis lasts for 10 minutes and it is very frightening, especially when I am lying down in the middle of the road.

It takes me 3 days to recuperate from such an attack and my muscle hurt so much it's like they are on fire or something similar.

Before I was diagnosed with POTS and NCS I was sure I had Parkinson. Parkinson tremors are due to damage to the cerebellum.

Ernie

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Well, i got the shakes at the social remember megan? okay mine was cuz the pain got so INTENSE, that i couldn't stop moving, grubb said relax and i couldn't stop them, i held them in and they were worse. i ended up in the er with the migriane and the tremors and once the pain went down a little the tremors stopped.

does that make sense.....i have had the worst migrianes for weeks and nothing has touched it working on finding an answer.

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Ernie, I know several of the kids in DYNA said they're on muscle relaxers and Valium to help with the shakes. I'm not on anything for it yet, but mine have been getting worse so when I go back to my doc next Tuesday for other problems relating to this, we think, I'm going to ask him about it then. I'm just wondering if suppressing it with medication would have the same effect as trying to fight it, ie. making it worse. I HOPE NOT!! :) I still hope for the best when I can too.

Susie, yeah, I remember, I didn't know you went to the hospital though. Sorry. The pain and shakes seem to correspond with me too. The worse the pain the worse the shakes. What you said makes TOTAL sense!! I usually get bad migraines after bad spells too, especially the ones where the shakes are intense. The ONLY thing that works for my migraines is a combination of morphine and phenergan. The phen. to help the stomach relax and take the edge off the neausa. The morphine dulls the pain just enough that I can fall asleep through the pain. I stay out for days at a time afterwards, but when I wake up it's usually gone. As soon as I wake up I pop an advil and a tylenol, like Doctor Abdallah told me to, and that's kind of a premtive stike against it coming back, but I have to take it literally as soon as I wake up the first time after it's all over. I've been having migraines since I was a small child and I've had 'em that have lasted for weeks on end without stopping. Usually I just ride them through because it's not worth the extra pain and cr*p you have to go through at the ER because the only way to get morphine in Virginia is at the ER and only once a month. I hope this helps some!!

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Unicorn, I am the same. When I try not to shake it gets worse and worse and then it explodes. The pain is much worst and it takes me more time to unparalise. When I wake up after a faint/tremors I also have a migraine and nausea. It seems we have about the same symptoms.

Tylenol helps me with the pain but I need a high dose.

Here we can get a form of morphine from the pharmacy. It is called Dilaudid and it is very powerful (and addictive). I use it sometimes when the pain gets unbearable.

I think that if we suppress it with the right medication it would be OK. The trick is to find the medication.

The propranolol helps with the continuous tremors but when I have a syncope/tremors, it is more seizure and the propranolol does not work. I will talk to my doctor about the muscle relaxant and give it a try.

Ernie

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I get a terrible case of the shakes sometimes, if i try to stop shaking, it makes it so much worse. My muscles will contract so tightly that i need to go to the er to get something strong. My GP said it was "nerves", if it is my nerves wake me up once every few weeks. i use Skelaxin most of the time but if it's really bad, i so for the valium.

Good Luck, Blackwolf

P.S. how old are you? i'm 33 and it is only in the last 8 months that this has become a problem. :)

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I'm 21, I'v been sick with this since I was 19. I've been getting the shakes the whole time.

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