My cousin, female 32, has RSD. It is localized to her right foot and leg. She says
it flares every few months. It is flared now. It burns, she says. Most of the pain is
in the foot she broke two years ago. When she had her first nerve block, she experienced
her first seizure. Now she has seizures every couple months. She doesn't jerk. She just
seems to pass out briefly, then, she doesn't know who family is for a few minutes. Her
speech is usually slurred too. Do you think this is from the nerve blocks? Also, how
intense is the permanent nerve stimulator? She is afraid to get one implanted.
Thank you

Cheryl, I am assuming you areb talking about the spinal cord stimulator (SCS). I have one. Its as intense as you want it to be as you regulate with the technician and have control of it with your remote. Ther is a trial surgery for it before the permanent one is implanted. It is the best way to find out if it works for you & if you can tolerate the stimulation. Iwould not give mine up even though I did not get the pain relief I ws hoping for. I was hoping for the full 50% pain reduction. I didnt get it. But the stimulatot definatley helps take the edge off my pain most days & distracts me from it. If your cousin wants more info I would be happy to aanswer any questions that I can. but the best thing is for her to do the trial surgery & decide for herself. I think its so great that you are trying to help her. You are a lovely person & everyone should be as lucky as to have a cousin like you. Good luck to your cousin & you.
Hugs, Denny

My body handles intense falre ups with seizures. I get what they call pseudo seizures that can b caused by extreme pain and stress which is what rsd is but i love my scs it didnt give me my wanted amout of pain relief either but it def takes the edge for me 2 b able 2 live life as much as i can. Hoped i helped a lil

Hi Cheryl, I'm sorry about your cousin having RSD from your accident. Mine came the day following surgery 12 years ago and now have it full body. I wasn't diagnosed for 4-5 years so never had any blocks. I've had lots of myclonic jerks, spasms. electric jolts thru my body and brain, scarry. Now am on anti-seizure med. lyrica before that was on 3200 mg. of neurotin, before they would stop. I woke up one morning and stumbled into the wall and door and passed out. I was out over an hour. When I woke up was not able to get up, but able to crawl to get my husbands attention. Asked him to call 911 and he did. passed out again and medics thought I was dead, couldn't find a pulse. blood pressure was down to 40. The sympathetic nervous system causes the blood pressure to rise, so most of us are on high blood pressure meds, and the para sympathetic nervous system causes the blood pressure to fall, thus the passing out. I check mine dailey. Dr. says it's like to happen again, I have a friends with full body that has had it happen to her three times. Mine was 4 years ago. Was in icu for 4 days. lots of tests on the brain. Hope this isn't too discouraging, just straight talk. I'd mention this to your neurologist, before any procedures done. This is a wonderful forum to get answers to questions and lots of education about RSD and encouragement. Hope the best for your cousin. Is there a support group in your town or nearby. They are wonderful too. You can find out by the RSD. org and putting in your zip code. Most of us have slowness of finding words in speaking. RSD effects the Limbic part of brain that controls short term memory. depression is part of RSD, skin issues, circulation, excess in sweating, Ice is not recommended to use on our body. Cold weather bothers most of us, so we use socks and gloves. Hope the best for your cousin and you as obviously you care deeply for her. your friend, Loretta

I think the seizures are not related to SCS, but are part of RSD and the general failure of the central nervous system. They are not "real" seizures -- they don't show up on an MRI -- but they sure do act like them. One doctor told us that it's critical to drink some juice immediately afterwards to get the blood sugar stabilized (as much as it's ever stabilized with RSD!)

This year , year 5 for me I have had 5 major seizures. Mine could be from the coma, I had alot of problems and was intubated for 35 days after developing pnemonia, i almost died. so I may have developed epilespy. We also often have sleep paralysis due to our inability to get accurate sleep this too causes seizures. you need a ecp I think it is called . they do not often show on mri. good luck i know they are terrrifying.cz