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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board

Seizures anyone?

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Old 08-11-2009, 02:05 PM   #1
US miss
Join Date: Jan 2009
Location: U.S.
Posts: 160
US miss HB User
Seizures anyone?

Over last weekend I had what I think was a TIA, for about 5 minutes, couldn't move, couldn't talk but could see and understand everything that was going on.

My "tremors" have been getting worse to the point of now being called seizures: flailing limbs, arched back and shaking lasting from 2-5 minutes so far. Is this common with RSD or do I need to be looking elsewhere for the cause on this one. My GP is quick to blame everything on RSD to the point where I think if I turned up preggers he'd blame the RSD so I need input on this one.

As a side note, never, ever let the student do the needle stick, I screamed, I cried while the doctor sat there and watched him, and they still kept sending him in. You should see my poor arm.

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Old 08-20-2009, 05:14 PM   #2
Join Date: Feb 2009
Location: Pacific Northwest
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harmony85 HB User
Re: Seizures anyone?


Ok I'm not sure if this is the same thing that is going on with you but I'll try and explain. I have rsd in my whole left leg. I was getting these horrible tremors,shakes,what ever you want to call them and they were back. I couldn't do anything other than ride it out.Couldn't move and more times then I'd like to admit it would make me horribly sick. My doctor who is treating my rsd with PM said that in some cases the nerves can have seizures that make my leg go all crazy. My leg will go into this tremor so bad at times my leg bounces a foot off of the couch of doctors exam table. Which you can imagine how that feels when your rsd legs slams onto the surface and you are severely sensitive to the slightest touch. My doctor has be taking baclofen for the bad tremors. I take a half of a small pill and within an hour they all stop and I don't have them anymore.
Like I said I'm not sure if this is the same thing. Other than going to the doc,getting a second opinion if you have to,during research and being your own advocate for your health I'm not sure what to say. It's such a hard and tricky disease. Can make one want to pull out their hair,lol I hope you find the answer you need and the help.

Old 08-22-2009, 09:42 PM   #3
US miss
Join Date: Jan 2009
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Re: Seizures anyone?

Thanks for the imput, but no, these aren't tremors, I'm up to 90mg of Baclofen a day to keep those under control, I think I'm maxed out on the dosage and can't have more but would love some. I've had those for months and they started acting up again, then the seizures started. These are full body muscles stiffening, back and neck arching right hand flying up legs kicking seizures. I'm losing words, losing parts of days and am having trouble getting my hand to write what I want or type the write letter. I can't get the primary care to take a look because the CAT scan came back fine, never mind that I've had a headache for 21 days straight and can't open one eye half the time due to the pain. I was just curious if anyone else had this or if it's maybe more of the lovely levaquin damage. I'm beginning to think it's more levaquin damage and am scared of what I'm going to lose next.

Old 08-28-2009, 08:42 PM   #4
US miss
Join Date: Jan 2009
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US miss HB User
Re: Seizures anyone?

Finally after a week of screaming, the neurologist said he'd see me. I'm on day 28 of a headache, how do I get rid of this? He looked at me, ordered another MRI and EEG and said this could be from the medication, stress, chronic insomnia because I don't sleep more than two or three hours in a row and therefore don't get "good sleep" or it could be the white matter changes in our brains. There are a bunch of studies going on and if anyone wants the the link to the article I found PM me and I'll send it to you. He has told me I'm not legally allowed to drive now until he clears me and I feel like a prisoner. He mentioned something about a seizure disorder, is this common with RSD?

My last bit of freedom has been officially taken away and I'm having a very hard time with this. My depression is up big time and they all act like that's causing the RSD. I wand to smack them, I wasn't depressed until I got this and I'm having a hard time adjusting to my "new life" being told to go to my happy place by my therapist isn't helping when I'm not able to leave my house other than to see a doctor or the occasional trip to the supermarket.

The people I live with are sick of having to drag me around so I'm stuck here and sorry, just needed to vent. I thought I found a place in a homeless shelter that would be better, but it was on the second floor and only staff members have access to the key and they aren't always there. I use a walker. Might as well keep my gilded cage instead of one filled with screaming kids (I have big noise problems)
As a side note:
How do you know if your RSD has gotten into your eyeballs? This is a serious question. My eyes feel like they are being stabbed with needles and I can't keep them open.

Thanks as always for listening, I'm on to my second appeal to Social Security I've heard the third time is the charm? Please tell me that's true. My long term disability people are reviewing my medical again and will shut it off until they are done and if they decide I can work even though my doctor says no, my only source of income is gone. I'm so stressed I bought a pack of cigarettes =) Just needed to vent and hopefully some input about the eyes.

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