temporary paralysis + muscle spasms

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temporary paralysis + muscle spasms

Postby prism » Tue Jun 12, 2007 8:53 am

Hi,

I'm disturbed to have experienced this temporary paralysis again after a couple of months of not having it. I have heard some of you refer to tremors and muscle spasms-- one follows the other for me. Kind of have some kind of regurgitation and drool on myself too.
I have no idea if these are connected to Chiari/SM or not or are something else entirely.
I had a "seizure" problem this last year, but they weren't brain seizures according to the tests. I thought that they were resolved by my going off some of the medications I was on. I don't think I'd call what I experienced last night seizure like- but really don't know how to classify it at all.
It's just very depressing to go through a period where I'm in pain and having bad itching and am unable to move, even locate where my extremities are with my brain.
:? prism
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Postby Ryzing » Tue Jun 12, 2007 10:06 am

I can relate to the tremor and spasm - as I sit here, my thumb spasms every 20 seconds or so and has been all morning. I also get random spasm all over - legs, arms, stomach, back, face - everywhere. Same with the tremor. These two symptoms are the worst for me, so my sympathy is with you as you deal with this.

Diane
Syringomyelia - C4-T12, Fibromyalgia, Scoliosis, DDD
"If you don't change your beliefs, your life will be like this forever. Is that good news?"
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Postby mac » Tue Jun 12, 2007 11:08 am

Diane and prism...really bums me out that you two are having these problems! Not good!!

prism, my thoughts are if you feel you are having anything close to a seizure, you should let your doctor know (I know you don't have the best doc yet)...someone professional should decide if you need to be seen about this or not. I don't know anything about this, okay, but it could be a reaction to certain meds...or food....I'm not 100% sure but seizures are not usually something we hear on this board associated with CM or SM. Paula (specialmom) has had a lot of seizures and perhaps can work with you some on this.

My other thought is about the bad itching. I also had this extreme neuropathic itching. So bad I wanted to cut my arms off. I bet you know what I mean. i wanted to share what helped a lot at those times. First off, I would take the blue pill, Extreme Sinus and Allergy Headache by Benadryl. It HAD to be that type the other did not work for me. But those blue pills, just one, really helped the NP itch alot!! After I took the pill, I sat down and iced the arms and hands/shoulders, whatever. Try to really calm yourself, as I think the elevated BP, using your hands and arms, lots of thing, really stirs up that painful itch. I know it well, it goes deep and goes straight to your brain, doesn't it. Give the Benadryl a try, and if you don't have them, get a couple of good ice gel paks, the kind that stay soft. I have one that I've had for about 10 years! I can't really find another like it...but with some research, I'm sure we could.

I hope this helps. The itch is terrible, I know, and combined with spasming, tremors...and something like a seizure...I can only imagine. I am concerned about the seizure-like episode and would like you to find a neurologist to talk to right away about it.

Also, concerning Benadryl, call the pharmacist and ask if it's okay to take it combined with the meds you are on. I asked if I could take it the same time as Norco and the answer was yes, but you should get your own answers on this, it's very important!!

Let me know how it goes. Diane, hope you don't have too many of those episodes again, okay?

mac
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hi

Postby prism » Tue Jun 12, 2007 11:41 am

Hi,

Thanks for the replies, for caring. I don't know what to say. There's a point at which words written on a computer screen just fall way too short to convey things. I have just fallen down the rabbit hole right now. Last night's problem started with terrible chest pain, that lasted a long while. (Not totally untypical for me) Today my whole body is majorly unresponsive. It's harder to walk, use my arms, fingers, harder to focus, balance, some loss of feeling. Lots of pain in my head. I had more trouble again this morning- not as bad as last night, not so much seizure like, but whatever it leaves me pretty impaired.
As to seizures and neurologists- I was at USCF for 4 days for a videoed EEG. I'm done with neurologists here. It was a bad experience, as are most hospital stays. With the memory of my heart surgery as a traumatic undergirding- There isn't a single neuro or cardio or surgeon, any kind of doctor I would go see or bother talking to.
I never fit their criteria and just slither through the cracks like some freak.
And whatever it is I know I'll live through it. Whatever it is, the worst of of it comes to pass. I've had a long year with falling down whenever "it" hits and being unable to move for a long, long time. Hopefully, I haven't regressed that far.
Sorry to be negative but it is what it is. I'm pretty convinced none of the doctors here know how to look at the big picture.
That's why I like the philosophy I hear about TCI-
:roll: I will see what Paula has to say~ and will see if I can't try Benadryl. What is it about nerves- (not nervous) and itching--- this board is the first place I've heard about a connection between nerve damage? and itching.
btw, that's one of the worst parts about the temporary "paralysis" - not being able to itch your itchies. :shock: prism
prism
 

associated conditions-

Postby prism » Tue Jun 12, 2007 12:23 pm

Hey, I just found this, followed another great one of Razzle's link suggestions- comments? prism

Associated Conditions: Other conditions including hydrocephalus, syringomyelia, seizure disorder, scoliosis, tethered cord syndrome, craniocervical instability, and Ehlers-Danlos syndrome can also be present in a patient diagnosed with Chiari I malformation. In addition to measuring the degree of herniation of the cerebellar tonsils, some surgeons look for the presence of a retroflexed odontoid process, basilar invagination, the presence of CSF flow in the posterior fossa, the volume of the posterior fossa, and the presence of arterial and/or venous malformations in the brain and cervical spine. Of note, Chiari II (Arnold-Chiari Malformation) is typically associated with Spina Bifida and myelomeningocele.

(what kind of seizure disorder)
prism
 

Postby Janice » Tue Jun 12, 2007 2:23 pm

Hi Prism,

I'm sad to hear you are going through so much. It is very frustrating as I have found. My doctors try to keep me comfortable with prescription or OTC medications but there is really nothing they can do right now. I always try to tell them of new symptoms but some just last a short time and then you don't experience them for a while. Eventually they come back, maybe after a doctor's appointment, lol.

I have the itching and agree with Mac that Benedryl seems to work, at least for me also. I would cry at night the itching was so bad. Most nights holding a brush in each hand to scratch the many locations throughout the night. I'm sure this drove my husband nuts, although he has been very supportive.

I also agree with Mac that you should see a doc for the seizure. I get pretty tired of the "nothing we can do" comments also but at least they are keeping a history of your symptoms so they are aware and will know when you absolutely have crossed the limit and it is time to address other options, besides waiting and keeping you comfortable. I just feel that it is really not there fault. No one wants to take a risk in operating too soon. They all are aware of the symptoms and some just try to take it lightly as not to worry us, at least I feel this way with my docs. Basically, because they do all they can but it's really all they can do right now.

We need to manage our symptoms with the help of our doctors and (from what I've learned, support from this board) but most of all we need to feel comfortable and confide in our doctors so when it is time for more aggressive treatment, we will know.

Take care and you are in my prayers for comfort and answers.
GOD Bless!
Janice

Thoracic: SM T3-T12 / Disc Buldge T7-T9 / Mild Scoliosis
Cervical: SM C2-C6 / DDD / Kyphosis
Hemangioma's: T9-T11 & L4

http://janice-mylifewithsm.blogspot.com/ (Copy & Paste link into your browser)
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Postby SMLady » Tue Jun 12, 2007 2:52 pm

I started having spasms last year. WhenI lie down at night and start to drift into slip, my entire body will start to spasm - sometimes hard. I now take zanaflex at night. It helps me fall asleep if nothing else.
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spasms

Postby hoz74 » Tue Jun 12, 2007 3:16 pm

hope you are feeling better soon, i feel your pain, my hands just plain quit working on me now and then for a few hours at a time, like today I have just about wore out the delete backspace button out on my keyboard because its almost the biggest challenge of my day just to type and quite entertaining too (if i couldnt find the humor in the situation i would go crazy) I am now getting ready to go off to my mri of my neck to see if I have a herniated disc which i do not think i do, but you cant tell doctors anything sigh... hope you all are feeling better soon
Luv hoz
ACM decompression surgery sept 06
Lord Keep your arm around my shoulders
and your hand over my mouth
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