Hi Linda, and welcome. I have seen this in a few fibro forum thread posts. Maybe never on this particular forum, tho, I think it was elsewhere.
I see this SX(symptom) a lot more often in posts my mast cell groups. Multiple studies implicate mast cell involvement in fibromyalgia. My mast cell groups are full of people who were first told they had fibromyalgia. And when you get other symptoms piling on, then is when the topic of mast cells might be eventually brought up on forums, because having over activating mast cells (a type of immune cell) can explain having multiple problems.
Theories in those mast cell groups for paralysis include severe electrolyte imbalance, a mast cell attack (which can cause for example the loss of potassium), possibly true narcolepsy, or maybe due to blood pressure drops during mast cell reactions or possibly due to too many prostaglandins being released by mast cells.
It might be a disautonomia problem for some people. When treatment got her MCAS under control (MCAS=mast cell activation syndrome), one person said that the treatments completely eliminated sleep paralysis. And resolved what had been thought to be POTS SX also, and that's why she also wondered if paralysis can somehow be part of disautonomia.
Some people have had this paralysis as a mast cell reaction to a med. I have seen opioids mentioned. Percocet and morphine. Most opioids can be mast cell activators. Another person got paralysis in a trial of lithium.
Sometimes I see people with EDS mentioning sleep paralysis as being a known SX within their patient group, but EDS is very much tied into mast cell diseases, so perhaps its most related to mast cell problems? One of those EDS/mast cell people said sleep paralysis hasn't happened again since she started Diamox 4 years ago. She asked her primary care doctor to prescribe it just because other people with EDS found that it helped them, and he was willing.
One had sleep paralysis a handful of times, was diagnosed with uars (upper airway restrictive syndrome) and started sleeping with a cpap. No paralysis issues since getting the cpap. (But then a half dozen people said using a cpap increased their mast cell reactions...In this group anything can be a problem for some people.)
I have seen some mast cell patients mention food comas. I think while sometimes it could be a diabetic issue, it seems to be a mast cell food reaction in this patient group. Maybe a person can hear but they can't always respond. Or can do so only with great effort.
One lady thinks it's a mast cell reaction lowering her blood pressure (That low pressure SX I have seen mentioned a lot) so she thinks she gets inadequate blood to the brain and muscles at those times.
Another said for her it is an early symptom of oncoming anaphylaxis in the night. We divide ourselves into 2 groups. Leakers and shockers. Us "leakers" don't go into full anaphylaxis. Or we have not ever done so yet, hehheh.
A couple of people in other threads thought it was high prostaglandin release from mast cells. I can't understand why that would be that people say that. Maybe they have high prostaglandins when they test after reactions or after anaphylaxis, so they assume its related. To my uneducated, less experienced mind, it seems like a leap to assume that. There are hundreds of mediator types that can be released by mast cells.
Oh, I searched her group just now, and I see our resident scientist who runs the group ("Mast Attack" is the name of her blog) was saying in an old thread that it's quite possible that "mast cell comas" may be induced by high prostaglandins.
Same thread, a person said when she was really reactive her pgd2 (prostaglandin D2) was in the normal range but serum histamine and chromogranin A was high, and sometimes she would have paralysis for hours. This had lessened at first with treatment with Gleevec...for a while...but it came back full force. Gleevec is a tyrosine kinase inhibitor. Basically, it should help stabilise mast cells. Edit: To clarify, it could stabilize them when that tyrosine kinase (or KIT) pathway is the pathway to cell activation. Unfortunately there are various pathways to activation.
[to get more technical "Activation of tyrosine kinases is central to the ability of both Fc epsilon RI (that's the receptor that IgE has a high-affinity for. It's on mast cells.) and KIT to transmit downstream signaling events required for the regulation of mast cell activation."]
One group member (different group) is a registered sleep technologist and clinical sleep educator. She said she would also question what sugar levels were at night. "We have had many patients with what they thought to be sleep paralysis and it turned out to be low blood sugar causing a "coma" like effect."
I have seen a surprising number of masties with waking paralysis. I've read that this can be a seizure (which a number of masties also have) but not everyone is calling this seizure. Maybe because of the prostaglandin thing. Some are just calling it a mast cell reaction. One person who has these paralysis freezes when she is awake was told by her mast cell dr that someone should give her epi pen then, or give it herself when she unfreezes. She said epi injection works to unfreeze her.
One person said the freezes are related to her having migraine and sumatriptan injection can fix it. She can just get out the word "stuck", and her husband injects her. (And she said she'll also take a valium. Some benzos can help mast cell patients. I think there are certain receptors on mast cells those land on...cant remember details today darn it.)
A couple of people say they get paralysis as a mast cell reaction to cold. (cold and heat can be mast cell triggers for some people. Me....but I don't tend to have extreme reactions).
Post Edited (Rockon) : 5/5/2019 12:22:54 AM (GMT-6)