SLEEP PARALYSIS AND SPDS?: Just a quick question... - Behçet's UK

Behçet's UK
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SLEEP PARALYSIS AND SPDS?

Just a quick question

I've been suffering with ChronicSleep Paralysis, insomnia, and also have SPDS ( sleep Phase Delay Syndrome.

And when I say Chronic I can have 4-5 episodes of Paralysis per night. Both when trying to fall asleep, and waking from sleep.

Sometimes I can go a week or so without an episode. Then suddenly, BANG! I'll have it several nights in a row.

The SPDS is constant and permanent. And no amount of 'Sleep Hygiene' will change that.

Anyone else suffer these symptoms with their Bahcets?

I also have difficulty swallowing, a permanent feeling of something stuck in my throat, dry mouth, and wrinkled tongue.

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Interesting. I get sleep paralysis sometimes, but from all the classic reasons (irregular sleep schedule, lack of exercise, exhaustion, stress). Super unpleasant. I've had it for years before Behcets so I don't think mine is related though. The best thing for me is as much exercise as possible and the knowledge that it's not real... Just have to wait it out. Best of luck!

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I have been diagnosed with Behcets a year ago a for 3 years I've had flare ups and also choking sensation it's taken 2 years to realise I have a blood clot in my neck and chest , which together are stopping blood and fluids flowing from my head and neck properly- as a result from this extra fluid pressing on my throat - especially when I lay down I have developed sleep apnea and when checked I had stopped breathing 38 times per hour! .. now I'm on a CPAP machine .. it was only by luck I got to see someone who knew about Behcets and knew it was a possibility it was a blood clot !! They thought originally it was Lemieers Syndrome or possibly Lymphoma.. I had CT's MRI's dopla's and even a PET scan to rule things out !

Think some uk GPs are ignorant to this - not many I met know anything about it .. not to mention playing the waiting game for a stent too !

Good luck with getting things sorted !!

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Wow thank you for your post I'm very interested to look into this for myself as it's a definite possibility. Sounds pretty scary though, didn't know you could survive that long with a blood clot!

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I'm on bloods thinners to stop any further clotting !

Good luck

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I have had periods of apnea from what feels like tongue sticking vs spasm or temporary closure of the throat

It is brief but forces you up and towards the window

My arms often fall asleep. The whole arm goes dead but quickly comes back with movement. A great night of sleep is rare, but when it happens it is an amazing feeling

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Yes I get sporadic episodes of sleep apnea too.

This is probably due to dry mouth and throat, with throat swelling.

I believe these are common symptoms of autoimmune diseases.

Ive woken up paralysed and unable to breath. 99% of the time the body is doing its own breathing. An involuntary reflex.

But a couple of times I've had no chest movement and zero air flow. Thought I was gonna die. Guess I passed out and woke up later. Thankfully.

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I have behcets and I have flare ups cyclically (every month). My first several days I sleep walk and it is horrible and have been injured many times. I get terrible dry mouth and heartburn. I regularly have trouble with insomnia and have only a few times have had sleep paralysis (unknown if it has anything to do with my behcets)

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Yes! Oh my gosh, your post could be something I wrote almost to the tee, I even suffer from constant burping now for the past 3 months nothing helps it. I've been thinking it might actually be due to silent reflux. I definitely have leaky gut. I don't know if I have Behcets but have found it could be a possible diagnosis for me as so many of the symptoms match mine.

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Yes I absolutely have the same issues!! It takes me hours to fall asleep. Sometimes I fall asleep only a couple hours before it's time for my family to get up and start the day. I have experienced sleep paralysis so many times I've lost count over the years of how many times it's happened to me. I also choke on water, food, medication, air. Feels like somethings stuck in there when I swollow. Then there are days I don't have any of these issues at all. Very frustrating. Just know you are not alone. I know exactly how you feel. I started sleeping with nature sounds playing in the background (water running, birds chirping, etc.) It helps sometimes.

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My throat is always fcuked! Though I've only had a steroid shot from my Rheumatologist.

1st appointment at the Royal London Hospital Bahcets Centre of Excellence is September 15th.

My Rheumatologist said I'm too complex for him to treat and monitor.

So basically buggered every day without hardly any let offs.

All good things come to those who wait and all...

I'll give the music thing a ago. Rustling leaves, waves, dolphins, wind, wood instrumentals etc 👍

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I'm not diagnosed either but I had a sleep study 12 years ago that showed I only go into stage 1&2 sleep as soon as I get to stage 3 I wake up before I can get a complete apnea. I woke up 267 in 6 hours. I now sleep propped up on my couch and have started dreaming again my mouth is so dry that I only make bubbles with saliva when I do make saliva. I often cannot sleep because of how dry my mouth is. I was diagnosed with retinal vasculitis and branch retinal artery occlusion last year and though my eye specialist is certain it's autoimmune I have not found my diagnosis. Now I have what I believe is my first apthous oral ulcer it's been nearly 3 weeks now no sign of healing. Last year I said no to oral ulcers but I have had many varied skin ulcerations all my adult life including some heroes looking lesions once on my vagina too. This year I keep getting boil like areas on my bikini area I heal one or two I get 1-2 more. I'm having neurological symptoms now too.

Please help!! Anyone had eye involvement before the oral manifestations???!

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