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