Has anyone else woke in the night with bo... - Cure Parkinson's

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Has anyone else woke in the night with body froze?After a struggle I manage to throw myself on floor.

wrench profile image
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wrench
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9 Replies
soup profile image
soup

Wrench, how were you diagnosed and who said you had mild PD? Where are you in the world?

wrench profile image
wrench in reply tosoup

in USA - diagnosed mild PD by my GP and Neuro DR.

soup profile image
soup in reply towrench

Ask for a DAT scan to eliminate other Parkinson's like conditions.

Pete-1 profile image
Pete-1

Sounds like a significant freezing episode. I have read of only 2 people with worse freezing. In their case freezing occurred all over the body. Only the eyeballs would move. This type incident would occur for several hours 2 or 3 times a week.

Their problem was solved entirely by the implantation of a DBS unit. For more detail look for Linda and Steve on the relevant Facebook page (don'r know which, you'll just have to search around for it) or copy and paste the following into your browsers; URL.

login.meetcheap.com/confere...

This gets you to a live chatroom. Steve and Linda are Administrators for this chatroom so they may not be online when you look

arwenmark profile image
arwenmark

There is also a sleep paralysis that can occur and has nothing to do with PD.

Hikoi profile image
Hikoi

This is a description of sleep paralysis to see if it fits with your experience.

"For healthy people, sleep paralysis occurs during REM (Rapid Eye Movement) sleep, and they are blissfully unaware that it’s even happening. But for some narcoleptics, falling asleep or waking up makes sleep paralysis kick in, creating a terrifying state where the mind is awake, but the body cannot move. The paralysis can last several seconds or even minutes, with rare cases lasting for hours."?

wrench profile image
wrench in reply toHikoi

This sounds exactly like mine.I have been in fear and somehow finally threw myself out of bed.Hurting myself sometimes.Thanks.

pauline19 profile image
pauline19

I have this and it is extremely rare. In my case it is Hypokalemic Periodic Paralysis. In the States I am one of 200. It could also be a related condition called Andersen-Tawil Syndrome. In my case the potassium level can be low by 1/10th of a point and I am limp, lose my voice (but not always) and even though I got dxed by Dr. Rabi Tawil in Rochester, New York, docs STILL think it's a stroke or psychological. Even wearing a med alert bracelet doesn't help. Look up "periodic paralysis international" for more info. That you flung yourself out of bed using your belly or trunk is what makes me think that's what you have. There is a drug, acetazolamide that lessens the severity and frequency of attacks. In my case the attacks were so mild my whole life that I thought I had chronic fatigue or something. But a doc gave me hydrochlorothiazide (HCTZ) which is a potassium-wasting drug that started making them profound. I was told it was mental or "blood pooling" and hubby said "blood pooling that takes away your voice??" Be aware that if a doc thinks you've actually had a stroke, the TPA will kill you, when all you need is K+....

And I have mild PD as well. If I had a dollar for every time I was told "Conversion Disorder" or "Somataform Disorder" I'd be a zillionaire. I take 40meq of potassium citate (Rx) daily. Doctors are shocked by this, thinking my heart would stop but it doesn't. In an attack there will be T-wave abnormalities, which should be a big red flag. In my case I've had to have the hubby take me out "against medical advice" BC each untreated attack permanently weakens your muscles. I went from vigorous daily excerise to being wheelchair bound in one year. Don't dismiss it out of hand. Good luck.

Joyable profile image
Joyable

I have had body freeze in bed several times but spread apart over the years and it hasn't happened to me in several years. I just couldn't move as hard as I tried; so I just give up and go back to sleep and when I wake up I can move again.

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