[Bratette19]

I have RSD and have a SCS since August. I have been having seizures. Yes seizures. The doctor I see tells me I could be having serve jerking. I hate the doctor I have but it is a workers comp so I am limited on my doctors.

Has anyone heard anything about RSD and seizures?

I am scared and tired of fighting the pain. I have the scs pump it helps some. I never turn it off. I also use my hot tub. I am 31 years old mother/stepmom of 5 amazing kids. One of which will not go to bed tonight bc I have 4 seizures jerking whatever they call it. It is so bad it put me on the floor.

I am partial weight bearing on my right ankle so I walk with crutches.

I just at a loss and crying non stop tonight. Any advice/thoughts would be wonderful

[Willow_Makk]

Originally Posted by Bratette19

I have RSD and have a SCS since August. I have been having seizures. Yes seizures. The doctor I see tells me I could be having serve jerking. I hate the doctor I have but it is a workers comp so I am limited on my doctors.

Has anyone heard anything about RSD and seizures?

I am scared and tired of fighting the pain. I have the scs pump it helps some. I never turn it off. I also use my hot tub. I am 31 years old mother/stepmom of 5 amazing kids. One of which will not go to bed tonight bc I have 4 seizures jerking whatever they call it. It is so bad it put me on the floor.

I am partial weight bearing on my right ankle so I walk with crutches.

I just at a loss and crying non stop tonight. Any advice/thoughts would be wonderful

The 1st doc that recommended getting one of them to me told me that it was a possible side effect.
I am so sorry it is happening to you. I understand you are limited on the doctors you can see (me too) but my rule is,if I feel like I am being "blown off" I will call the insurance and get them to change the doctor so I can go get a second opinion. If the new doctor can't do anything for you, you can always go back to the old one.
Good Luck

[Brambledog]

Hi Bratette

That's excellent advice from Willow. Might be an idea to do some research on the pump and see if seizures can be a side-effect, if they are known then best to get the wire positions checked to make sure they are in the right place for you. I know they have to be positioned very carefully because there can be a number of issues if they are slightly off...

You mention the 5 months since the pump - did you get it straight away when diagnosed, or have you had the CRPS for much longer than this? Sounds like you are having a really tough time of it, and that's a lot of pain to be still in while on a constant SCS I agree with Willow on changing docs - especially if this one doesn't seem that good - if you hate him, that's never a good sign of how good he is. I know it's so hard to find a good doc, but there are some out there, and with a condition as serious and debilitating as CRPS, it is really important to get the RIGHT treatment. And sadly, all docs seem to treat this differently

Are you on any meds on top of the pump? Also (so sorry for all the questions, I'm just worried for you) are you convinced you have CRPS/RSD? What are your symptoms? I only ask because although it's rare enough to actually get diagnosed, docs do make mistakes, and I'm just wondering whether this guy might be flying solo and maybe hasn't investigated thoroughly. Obviously I could be completely wrong about this having got hold of the wrong end of the proverbial stick lol, in which case masses of apologies!!!

I really hope you're having a better day today. 5 kids is a LOT of work, I'm not surprised you are struggling with the pain. There are a few non-med things that really help me - I use warm Epsom salt baths, deep breathing exercises (the deep breath-in through your nose silently saying 'calm', then a long, slow breath out through your nose counting slowly to 5), and meditation (you can download tracks for free from iTunes, or look for the Mindfulness Body Scan meditation on YouTube or the web.

I appreciate that this might not be possible all in one go with 5 children, but I have roughly an hour each morning that I use for some me-time. I gently stretch out my muscles, then I do about 15 minutes of very gentle exercises called Qi-Gong, and on bad days just some ones called "exercises for those confined to bed" from a diabetes site (google the quotes bit, they take your legs mostly out of the equation, and concentrate on core strength - I used them for ages when my leg was really bad, they are great). Then I use some nice-smelling oil (all natural to prevent irritation) and massage my legs and arms gently. Then I do a meditation.

I know it sounds happy-clappy and I was very skeptical myself, but it really truly helps a lot. It makes me feel like I have some control over how I feel, and keeps me in touch with my body. It also makes me feel better about things, and reduces my pain levels. If I miss it out, I know all about it. My skin is in better shape now, and my overal mobility is improved (I was in crutches and a wheelchair before June this year). If an hour is just out of the question then try splitting it into chunks where you can and just grabbing ten minutes here and there. Stress is such a big flare inducer for CRPS, and if you can feel like you have more of a handle on things then it really does help.

Sorry to go on, I'm a wordy soul at times!

Take care of yourself, and I hope your pain levels are lower today. What ages are your kids? I admire you so much, coping with this along with a big family and all the work that goes with it. I hope you have a bit of help sometimes from friends or family.

Hang in there,

Bram.

[AZ-Di]

Hi Bratette,
Seizures must be really scarry!! What meds are in the pain pump? I ask that because lidocaine can have that side effect. (I've read about lidocaine lately).

Bram had some good thoughts and questions so I won't repeat those.
My posts are generally short b/c my left hand generally won't cooperate for very long.
I have Baclofen to take for spasms but I don't think that's the same thing as full seizures?
You do have a full plate with those kids and all!! I do hope you get answers and relief!

[RSD ME]

Hi Bratette, I'm sorry you are suffering so much. I have never had seizures (knock on wood) so I can't really offer any advice. I am one for getting more than one opinion though from other drs. Maybe they can help shed some light on this for you. I hope you feel better soon. Take care. From RSD RENEE.

[heatherg23]

I had (...long story) a Spinal Cord Stimulator for 9 months and never had any side effects. My leg jerks (which is my effected area) sometimes even my whole body but it's for a split second only.

I would think that that is something that needs to be addressed........like NOW! You're doctor doesn't seem to concerned. Take a video of a seizure and show it to em. Maybe he'll care a little more!

What's worse...not having the SCS and dealing with the pain or having it and dealing with seizures. Sometimes the things that are supposed to help make things worse. Sorry you have to deal with that.

Good to luck to you. Hope you find some relief soon
Heather

[Imahotep]

Some doctors consider the pain itself a sort of seizure. There's certainly jerking associated with RSD. It can be extreme.

[doubleagle15]

Originally Posted by Bratette19

I have RSD and have a SCS since August. I have been having seizures. Yes seizures. The doctor I see tells me I could be having serve jerking. I hate the doctor I have but it is a workers comp so I am limited on my doctors.

Has anyone heard anything about RSD and seizures?

I am scared and tired of fighting the pain. I have the scs pump it helps some. I never turn it off. I also use my hot tub. I am 31 years old mother/stepmom of 5 amazing kids. One of which will not go to bed tonight bc I have 4 seizures jerking whatever they call it. It is so bad it put me on the floor.

I am partial weight bearing on my right ankle so I walk with crutches.

I just at a loss and crying non stop tonight. Any advice/thoughts would be wonderful

I am relatively sure you can change doctors. Check with workers comp and ask for right to second opinion even if it is out of their normal doctors. Curious was injury due to negligence on part of company. You might need to consult attorney skilled in w/c law if you haven't slready done so

[Russell]

All I can tell you here besides all the great advice you've been getting is my own experience with siezures. Mine started after I was changed from Neurontin to Lyrica which deals with the pain much better. My neurologist prescribed Cymbalta and my siezures have lessened alot both in numbers and intensity.
Ask your doc about these!!
I hope this helps....

[tkayewade]

I get those also also. My doctor told me they aren't seizures or I would be unconscious. However, I have seizures in absencia. Which is a minute of staring off into space. These are completely unrelated to the jerking movements. They are not seizures. I also have an scs., two actually. They started after it, but I never made the connection.
I have yet to find anything that marks them better, and find they're worse when I'm tired.