My daughter, Alison, has had RSD for three and a half years affecting her left leg, right arm and now back
At Easter she had a spread to her arm and shortly after began to faint on occasion
This became worse over the ensuing weeks to a point where she was having anything up to ten episodes a day
During these repeated episodes she injured her back and the RSD decided it had a new place to affect
Ever since then the syncope episodes have increased and are now accompanied by myoclonic spasms affecting her whole body and sometime hallucinations
She was diagnosed with syncope of friday. The neurologist does not have a full understanding of RSD and says it may be a "teenage girl" thing and will subside by the time she is 18 but that it is likely pain is the trigger
As Alison has an underlying pain condition it is difficult to belive that these will stop as long as she still has RSD
The episodes are now coming throughout the day peaking from mid afternoon through to late evening and can number anything between 20 on a good day up to 30 plus on a bad day
They can often come on without warning and during one episode the other night Alison choked on something she was eating and I had to provide emergency treatment to help her which was extremely scary
I was wondering if anyone else with RSD has syncope and if so how many attacks do you have and have you found anything that helps
Thanks
Andrea

Dear Andrea -

I am very sorry to hear Allison has this to contend with on anything approaching a regular basis. Let alone 20 episodes of syncope on a “good day.”

I had one episode of syncope about four years ago: six years into the RSD. I was standing in the kitchen talking to my then 13 year old son, with a good night's sleep and few medications thus far that day, having already had breakfast and at least one large cup of coffee, when I'm told I said something to the effect of "oh, my head . . ." and fell backwards onto the ceramic tile floor. (In a recent essay for his English class that I'm not supposed to know about - regarding some of my post RSD/CRPS parental foibles - I am described as toppling over like a tall pine cut down below.) It cost me 7 stitches on my scalp and a completer neuro workup, but no cause was found, as is the case with 85% of the single-episode cases, according to the neurologist who followed me.

But please note: syncope must be distinguished from a condition common to people with CRPS, orthostatic-hypotension, which only occurs in the act of standing up, and people become dizzy or faint due to low blood pressure secondary to the dysregulation of vascular tone that is part and parcel of our common affliction. For its part, I have been advised that certain medications can make orthostatic-hypotension worse, including narcotics and diuretics, the latter significantly reducing the blood volume in the body.

But as to my single episode of syncope, where I had just walked downstairs and had been standing for at least a minute before it hit me, I still have no firm understanding as to what hit me.

But whatever I may have experienced, it was nothing like myoclonic spasms and hallucinations. My spasms - when in full bloom - are essentially continuous as opposed to the electric jerks of myoclonic spasms. And yet myoclonus is not unknown in children with CRPS. See, e.g., Movement disorders associated with complex regional pain syndrome in children, Agrawal SK, Rittey CD, Harrower NA, Goddard JM, Mordekar SR, Develop Med Child Neurol. 2009; 51:557-562, FULL TEXT @ http://www.rsds.org/2/library/articl...ement_2008.pdf

Department of Paediatric Neurology, Sheffield Children's Hospital, Sheffield, U.K.

Abstract
The aim of the present study was to review the history, clinical course, treatment, and outcome of movement disorders in children and young people with complex regional pain syndrome (CRPS). Case notes were reviewed retrospectively of children and young people who presented with movement disorders in CRPS to our tertiary paediatric pain service over a period of 13 years. Ten children with CRPS presented with movement disorders (eight females, two males). The age at first presentation with symptoms of CRPS ranged from 8 to 15 years (mean 11 y 2 mo, median 13 y). The most common movement disorder was dystonia (n=8), followed by tremors (n=3) and myoclonus (n=3); two patients had all three movement disorders. The movement disorder affected mainly the lower limb (n=9) with a predilection for the foot (n=7) and was frequently initiated by minor trauma (n=7). Follow-up ranged from 6 months to 14 years. The outcome was variable, with good prognosis in nearly half of the cases: four children experienced complete resolution of symptoms. Two children showed a slight improvement. Four children showed no improvement. Movement disorders in CRPS are under-recognized in children. The management has to be multidisciplinary with an expertise in paediatric pain.

PMID: 19018846 [PubMed - indexed for MEDLINE]

http://www.ncbi.nlm.nih.gov/pubmed/19018846

As I’m sure you noted, the authors of that study are at Sheffield Children's Hospital, I don’t know what’s required by means of a referral to get there in the NHS, but it is probably worth the shot.

That, or being seen by Dr. Candy McCabe http://www.bath.ac.uk/pip/directory/profile/827314 (please note her list of publications at the end of the page) at the Bath Centre for Pain Services (BCPS), part of the Royal National Hospital for Rheumatic Diseases NHS Foundation Trust (RNHRD). “We are a centre of excellence for the provision of intensive rehabilitation services for adults, young adults and adolescents with chronic pain.” http://www.bathcentreforpainservices.nhs.uk/Index.aspx That said, the latter’s in-patient programs appear to be focussed primarily on regaining functionality, as opposed to offering medical treatments per se, but I hope that's my error in reading this over too quickly.

Good luck! As you know, your daughter is thought of quite highly around here. (I still can’t get over the beauty of the poetry in her blogs.)

Mike

I have not but it is repleate in the literature, as Mike has posted. BTW, nice pic Mike!

My goodness what an awful thing to have to go through...now I miss Ali even more...please tell her that we all miss her deeply on this board and I will pray for her daily. She truly is the the sweetest ray of sunshine and I miss her happy little quips that she would post to every newcomer....hopefully you can find a doctor that won't label her in such an awful light. Please give her my love
Cindi

I think I posted to you before re: this elsewhere. I was diagnosed with vasovagal syncope prior to my injury and RSD diagnosis. Ironically, I haven't had any episodes recently, most likely since I'm confined to a wheelchair and spend quite a bit of time in bed. Well, I take that back. I had an episode during one of my sympathetic blocks (they were able to track it thankfully since I was hooked up to monitors at the time), but they pushed some meds quickly (epinephrine, I think, but not positive) and I was fine.

At any rate, not sure whether it's much help, but I'd be interested to know more regarding the possible comorbidity of the two diagnoses.

I truly feel for Alli. At least in my family (three of my sisters have also been diagnosed), we are all triggered by pain, and none of us have outgrown it.We have, however, learned to manage it for the most part thankfully.

Personally, I'd be quite concerned about a neurologist who isn't familiar with RSD, and doubly concerned regarding his insinuation that this is caused by hysteria. Can you get a second opinion by chance?

Hugs. It's difficult enough to have this as an adult. I can't imagine a teenager affected by it.

Hi Andrea,

First I want to tell you how much we care about Ali, she is a great young lady. I also have a daughter that has RSD she is now 17. She was disagnosed with Neurally mediated hypotension...which is low blood pressure with syncope, same thing, It is a part of RSD, it is a part of the autonomic nervous system. My Lindsay took blood pressure meds to raise her blood pressure for about 5 years. She used to pass out all the time. Especially in early morning when she first stood up. They administered a tilt table test on her and her blood pressure bottomed out. She had a very difficult time for many years with medications. She couldn't take anything without it dropping her blood pressure. She went though Ketamine infusions back in November and then in July, after the infusions her blood pressure leveled out. But, I also was told by a doctor that she would grow out of the syncope. She still has the syncope and we are very careful when she gets up. She has certain exercises that she has to do before getting out of bed. Believe it or not when she first decides that she wants to get out of bed, she has to punch the air, and wiggle her legs...then she has to sit up and the hang her legs over the bed for several minutes before standing...I will usually take her blood pressure before she stands to make sure that it is normal before standing. I am sorry that this is all over the place, but it is important that
her pressure is stable before standing. Did they put her on any medications. What they started Lindsay on when she was 11 when she was diagnosed was salt tablets three times per day. Hopefully they checked her sodium level with blood work. But she did take midodrine for 5 years for the blood pressure. I don't know if the ketamine stabelized it or if she has grown out of it...your guess is as good as mine.

I am so sorry that Ali is struggling right now. If you would like to pm me feel free, as a mum I completely can understand how you feel right now.
My prayers are with you both.

Much love,
Sandy

I would like to mention that VasoVagal is the same as Neurally mediated hypotension...and Orthostatic hypotension...anyway, I forgot to tell you that when my daughter was in the Cleveland Clinic childrens pain program, while talking with the parents of the other children there with RSD, most of the children also suffered from Vasovagal.

Please let us know how Ali is doing, we really care for her.

Sandy

Andrea.

Something just came to me. Last year when Lindsay was seeing her cardiologist he suggest that he felt that the syncope was due to her middle ear. He sent her to an Ear Nose and Throat doctor that believed that it was Meniears disease... http://www.ehow.com/about_5063952_me...-disease_.html. Check out the link. I took her to a balance doctor and he ran some balance tests. We never followed up because Lindsay was having a pretty bad flare in her legs, but her syncope is few and far between since the Ketamine Infusions. Have you taken her to an ENT? I am sorry that I didn't remember this before, but as you know, when you have a symptom you are sent from doctor to doctor.

Keep pushing for a diagnosis. Don't let them tell you NO. Something is going on with her and they need to get the right answer.

My prayers are with you.
Sandy

Thanks so much everyone for all of the input, it is much appreciated !

Alison's syncope is still really bad. She is having between 25 and 30 attacks a day. I have posted on several message boards about Syncope and they all say that this ammount of attacks isn't normal but none of them have a pain condition so I am not sure what to think.

She seems to have Syncope attacks when there are flashing lights a lot which to me, sounds a lot like Epilepsy although her Neurologist says it isn't that as they can also occur without a known trigger.

Mike - Thanks for the info. Ali used to collapse quite a lot when standing up and still does however it has got a lot worse now and she can just be sat watching the tv and will collapse and have a fit. Her PM Doctor is at Sheffield Children's Hospital and he is good but has never seen this happen to anyone else so doesn't know what to do. I'm wanting Ali to get transfered over to the adult PM Drs and Neurologists but unfortunately, will have to wait another 6 months until she is 16. I have emailed Great Ormond Street (leading childrens hospital in the UK which she also attended) as I can remember her PT talking about collapsing and RSD but they have yet to reply.

Sandy - I am so sorry to hear that your daughter has RSD and the same problems as Ali also - as a parent I understand how hard it is to watch your child deal with all of this so if you ever want to talk, feel free to PM me.

A lot of what you described with Lindsay sounds like what Ali has also. Her blood pressure seems to be worse first thing in the morning when she wakes up, early and mid afternoon then last thing on a night though she does have a lot of problems during the day also, they just aren't quite as bad.

Ali is on oral Ketamine and it was thought that maybe that could be causing some problems but she has been on it for about a year (though she only takes it when she's in a really bad flare) so her dr said it can't be that. Her PM Nurse wanted to see if it would be possible for her to take it all the time to see if it would even out her Blood Pressre so its interesting that you said Lindsay's Blood Pressure seemed better after taking it.

The Neurologist hasn't put Ali on any meds. He said it's just a case of 'learning to deal with it'. Easy for him to say but it's really affecting her life now - she can't go out as she collapses. Thankfully she has a supportive boyfriend who helps take care of her whilst I have to go to work.

What you said about the ear was interesting - they haven't mentioned that at all. Ali did have an EMG to rule out any heart problems but it came back normal so the Neuro said it was typical Syncope.

I am going to try and get a referal to another hospital or possibly take her to ER as we can't go on like this much longer.

As some of you know, Ali was supposed to have been having a baclofen pump to help control pain however her PM Dr wont do that now she has problems with her back. I can understand where he is coming from but on the other hand, we have been told that we will probably need to get the pain under control for her to stop collapsing.

Thanks again for the support - it's much appreciated!

Andrea

First, Allison you are a brave young women and so sorry to here this latest battle for you. I hope you are feeling better in the near future.. I just wanted to comment on Mike's post. It is interesting to me because I don't get exactly what Allison and Mike get where they pass out, but I first get a headache, which then turns very quickly into a migraine which is just unbelievable. Let me back up I have never suffered from migraines until I had my accident then DX with RSD and my RSD is upper extremety right side. When I get these episodes or whatever they want to call them the pain is so prominent on the right side I could draw a straight line right down my face to the back of my head right down my shoulder and right arm. If I don't get to a place where I can lay down I do feel like I will pass out. I know this sounds like a typical migraine, but here's the interesting part and somewhat proves that maybe your type of episodes and mine are being induced my the RSD. After each of my in-patient ketamine treatments with boosters I never got the headaches again. Now I'm almost 2 years out since my last ketamine procedure and just this past Sunday I got one of those migraines. I have not one since I finished the last procedure. But I have also been having many flareups and more RSD symtoms in the last month or so. Sorry, ending point:When my RSD is under control I'm ok and don't get those episodes. I believe RSD induces these headaches/episodes even thought different migraines are part of some kind of vascular problem in the brain and passing out is kind of the same. Oh, and you mentioned low blood pressure I'm usually on the low side but at my last appt, just 2 weeks ago. I was really low. Just thought this was interesting sorry if I bored everyone.

Gabbycakes