June 2, 2015 at 2:39 am #842lindseymjParticipant
I was wondering if cellulite is related to EDS in any way? I have had cellulite since I was just 12-13 years old despite being 5’4″ and 110 pounds at that age. I’m still in pretty good shape, I’m 5’5″ and weigh 140. I have no idea how to get rid of it. No matter how much weight I lose it is still there. Does anyone else have this problem?
I also had a question about sleep paralysis.. I had a scary episode this morning. I was awake but I could not move or speak. I saw a post talking about EDS/Mast Cells/POTS and going into shock or something, but I could never find another post about it. Is it dangerous? How do you get out of it when it happens?June 5, 2015 at 6:58 pm #5505Mog the DogParticipant
Isolated sleep paralysis is not considered dangerous. It typically lasts a few minutes or less (although in rare instances can last over an hour – gasp!). As far as I know, it is not related to Ehlers Danlos Syndrome (EDS), mast cell disease, or POTS.
Sleep paralysis is considered a parasomnia (something unwanted that occurs during sleep or during the sleep/wake transition). It often occurs in those with narcolepsy, so if you also suffer from the other kind of EDS – excessive daytime sleepiness – and you experience hallucinations either upon sleep onset or upon awakening, you should consult with a sleep specialist.
I have experienced all of the symptoms of narcolepsy except for cataplexy, so I am quite familiar with how frightening an episode of sleep paralysis can be. I eventually learned that when I get myself locked up into the dreaded sleep paralysis state, I am actually in REM (aka dream) sleep and can dream anything I want. As soon as I start lucid dreaming about something nice, I either drift back into total sleep and don’t notice the paralysis or I wake up with a smile on my face. It’s taken a long time to develop this skill, though.
MTDJune 9, 2015 at 8:34 pm #5524BarbaraParticipant
I also had a question about sleep paralysis.. I had a scary episode this morning. I was awake but I could not move or speak. I saw a post talking about EDS/Mast Cells/POTS and going into shock or something, but I could never find another post about it. Is it dangerous? How do you get out of it when it happens?
I posted this post quite a while ago, regarding my experience of this, at:June 11, 2015 at 12:56 pm #5532Mog the DogParticipant
Thanks for the link to the previous forum discussion. Your experience appears to be very different from sleep paralysis (the REM sleep parasomnia) even though it was occurring during the transition into sleep. I am glad to know that you did get some relief after all those years of suffering.June 11, 2015 at 1:09 pm #5533lindseymjParticipant
Thanks everyone for your replies! Barbara thanks for the link, that sounds exactly like what I’m experiencing!June 11, 2015 at 8:58 pm #5534BarbaraParticipant
No probs, (thanks MTD)
I have had to sleep sitting bolt upright for the last 12+ years, as many of my symptoms were even worse laying down, that’s one of the reasons why Dr Diana’s ‘vagus nerve/jugular vein’ theory made so much sense to me. In bed, it’s no good if your pillow forces your head into flexion, you need to avoid this at all costs, you have to support your neck and stop anything from pushing your head forwards.
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