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
Quote:
Originally Posted by ali12
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
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