Hey Ali, I am so happy to see you back on this forum...I was worried about you. Lindsay does have POTS she was diagnosed with that when she was 11 years old. She is also hypermobile. I knew that was what is wrong with you they also call it Vasa Vagal with syncope...sorry for the spelling. Lindsay took medication for years until she had the ketamine infusions her blood pressure stabillized. I am wondering if that could be starting to rear it's ugly head again. Lindsay sees a wonderful cardiologist though
All Childrens Hospital here is Tampa, he is the top doctor dealing with POTS.
I hope you feel better sweetie, I know this has been a hard road for you
Keep your chin up and I will keep you in my prayers.
Love Sandy
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Originally Posted by ali12
Hi Sandy,
Sorry to hear about what Lindsay is going through right now. I hope she feels better soon.
I have a rash over my body at the moment. It looks kinda like i've been bit by something but haven't. Not sure what it is but I do tend to get them a lot.
As far as the fainting, I have been collapsing for 3 months now on average 25 times a day. I can just be walking round and fall to the floor although it does happen more during sitting, hence why I haven't been on the forum much. It's been so bad that i've had to pack in my college course I was doing and have now developed RSD in my back from falling out of bed whilst collapsing! I was diagnosed with Reflex Syncope which is something up with the calf muscle that pumps oxygen to your brain and then told it was POTS (Postural orthostatic tachycardia syndrome) which is something wrong with the heart beating too quickly causing your blood pressure to drop at certain times.
I'm on the waiting list to see doctors that specialise in it but they are only at the adult hospitals over here so wont accept me until I am 16 which is another 5 months away  !
My PM Doctor did say that RSD can cause your Blood Pressure to go either too low or too high and the POTS can be caused by Hypermobility so if Lindsay has that it might be worth getting it checked out. Mines believed to get worse when my pain spikes as a way of my body 'coping' so that could have been whats happened to Lindsay.
Please send her my love and if you ever want to talk i'm here!
Alison. x |