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Do you feel sick when you lie flat on your back, or have you ever felt “paralyzed”?
Posted: 01 December 2011 06:40 PM   [ Ignore ]  
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Hi Everyone,
In the interest of research smile can you tell me if you feel worse if you lie flat on your back? How do you feel? What happens? Have you ever had episodes where you felt paralyzed, and were unable to move and perhaps even speak?
I have! I think I know why, but I wanted to hear from you all and see if we’re having the same funky thing going on here!
Thank you, my friends!
smile Diana

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Posted: 03 December 2011 12:15 PM   [ Ignore ]   [ # 1 ]  
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In the interest of research, and being the willing subject that I am, I decided to sacrifice myself and lie down. =) I discovered that when I lie down flat on my back, (no pillow) I don’t really notice feeling “worse” in a sick way, but I feel like I am under a lead blanket. (And actually, when I am especially fatigued, I feel that way when I sit, too) I’m not sure what you mean by “paralyzed”, but in my mind I feel like I can’t move or speak, seemingly because the “weight” is so heavy, and it would require strength and effort, that I don’t have. I laid down flat, without a pillow, and I did notice that the head and neck pain I would normally get when I sleep with a pillow on my back, I did not get. That was interesting to me. This also helped me to figure out that I DO have POTS!

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Posted: 09 December 2011 06:56 PM   [ Ignore ]   [ # 2 ]  
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Hello Dr Diana, Just wondering if you are able to say what the reason is for feeling sick or paralyzed when lying on back? Curious! Thanks

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Posted: 12 December 2011 11:53 PM   [ Ignore ]   [ # 3 ]  
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KC - 09 December 2011 06:56 PM

Hello Dr Diana, Just wondering if you are able to say what the reason is for feeling sick or paralyzed when lying on back? Curious! Thanks

I’ll give you a hint, and save the “big reveal” for Part 2—how does that sound? When we lay on our backs, we are very prone to going into shock - our heart rate and BP both drop simultaneously. This can leave us unable to move or speak (I’ve been there a few times). Basically, if you ever feel this, sleep slightly propped up, and on your side and you’ll probably avoid this. ‘Big Reveal’ soon, OK? smile Diana

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Posted: 14 December 2011 11:35 AM   [ Ignore ]   [ # 4 ]  
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Dr. Diana - 01 December 2011 06:40 PM

Hi Everyone,
In the interest of research smile can you tell me if you feel worse if you lie flat on your back? How do you feel? What happens? Have you ever had episodes where you felt paralyzed, and were unable to move and perhaps even speak?
I have! I think I know why, but I wanted to hear from you all and see if we’re having the same funky thing going on here!
Thank you, my friends!
smile Diana

I"m not sure if I’m posting properly but here it goes.  I am not diagnosed yet with anything other then a possible pain disorder.  That is bull:)  I believe along with two other doctors that I have pots.  It all started 3 years ago,ugg, when I had a rotational adjustment by a chiropractor.  I went home feeling odd and then by that night I could not move.  I was stuck in bed with extreme dizziness, extreme nausea, extreme weakness, I could not move my right arm.  Lasted 3 days.  Then for a year and a half I had spells.  ALl the time, to the point of going to emerg.  Normal results everytime.  Wasd rear ended a year and half ago and been 10x worse since…Does anyone else know of their pots being caused by neck injuries like these.

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Posted: 14 December 2011 03:39 PM   [ Ignore ]   [ # 5 ]  
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Oh my! Absolutely! I can never sleep on my back. When I fall asleep flat on my back I often have episodes of sleep paralysis, where I seem to wake up, but cannot move, feel very panicked, and want to scream but can’t, and am still asleep somehow, but it feels very much as though I’m awake. This never seems to happen when i lay in a different position, so I just avoid sleeping on my back now. Also, if I wake up but stay lying flat I will feel as if there is a lump in my throat, and I will feel nauseous, but sitting up seems to help. It will lead to vomiting on the odd occasion, and is much worse if I don’t get enough sleep, and the sleep paralysis is also worse if I’m over tired.

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Posted: 20 December 2011 07:37 PM   [ Ignore ]   [ # 6 ]  
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Justter - 02 December 2011 09:06 PM

I’ll jump in.  smile  When I lie flat on my back, my head pressures up, I feel nauseated, and almost hungry for air.  I have had episodes where I became paralyzed, and talked about that in one of my videos, I think it was the “Don’t assume” video (This is tslu1970 btw, lol).  Hope this helps.  wink

That’s it to a “t”, Justter! I’ll look for your video. Meanwhile, be sure to go to bed well hydrated, try not to sleep on your back, and have you elevated the head of your bed? Hang in—this is rampant with us… Big hug, Sweetie, Diana

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Posted: 20 December 2011 07:42 PM   [ Ignore ]   [ # 7 ]  
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KC - 09 December 2011 06:56 PM

Hello Dr Diana, Just wondering if you are able to say what the reason is for feeling sick or paralyzed when lying on back? Curious! Thanks

Hi Sweetie, I think I have this in the bag! I’m writing this up (with references). I’m under a fair amount of scrutiny, of course, and need for the doctors to “get it”. This is a huge problem with us, and if it is especially bad, I wonder if it could be life threatening (not to be frightening and morbid, here. I’m just trying to jump up and down and get the attention from doctors that we so desperately need!). Until then, as I told Jestter, be sure to go to bed well hydrated, try to avoid sleeping on your back, and elevate the head of your bed a bit if you can. Cool? Scientific answer forthcoming… smile Diana

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Posted: 20 December 2011 07:47 PM   [ Ignore ]   [ # 8 ]  
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neartpuppy - 14 December 2011 03:39 PM

Oh my! Absolutely! I can never sleep on my back. When I fall asleep flat on my back I often have episodes of sleep paralysis, where I seem to wake up, but cannot move, feel very panicked, and want to scream but can’t, and am still asleep somehow, but it feels very much as though I’m awake. This never seems to happen when i lay in a different position, so I just avoid sleeping on my back now. Also, if I wake up but stay lying flat I will feel as if there is a lump in my throat, and I will feel nauseous, but sitting up seems to help. It will lead to vomiting on the odd occasion, and is much worse if I don’t get enough sleep, and the sleep paralysis is also worse if I’m over tired.

BINGO!!! Give the girl a prize—you describe exactly what I mean. My breathing is very fast and shallow, and I can’t call out for help. SCARY. I knew if I could sit up, I could break it. I started to slip into another one last weekend. Yikes. I went to bed very thirsty (Bad, Bad, Bad), but I was able to speak and get help before it was in full bloom. Do you know if you have any hydrocephalus (or has your doctor let you try a bit of Diamox in the evening before bed time? I’m curious if you have symptoms of high intracranial pressure… Thank you for chiming in! big hug, Diana

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Posted: 01 January 2012 05:26 PM   [ Ignore ]   [ # 9 ]  
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You know my answer but I did get a more accurate BP cuff for Christmas so one of the days I may repeat the experiment for you. I also have a slightly better “camera” so maybe video aim would be better. Will let you know when I post it. Mt wrist BP cuff reads HIGH though. So, the last reads of 107/70 must have been much lower last time.

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It’s good to be open minded, but not so open minded that your brain falls out of your head.

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Posted: 14 January 2012 04:47 PM   [ Ignore ]   [ # 10 ]  
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Melania - 14 December 2011 11:35 AM

  Wasd rear ended a year and half ago and been 10x worse since…Does anyone else know of their pots being caused by neck injuries like these.

Absolutely! I hear of this from a fair number of patients. If you broke any small vessels at the top of your brain (like a small bruise, only smaller), those red blood cells can further block the drainage of CSF, making your intacranial pressure higher and increasing your POTS symptoms. Did you and your doctors discuss Diamox to see if that helps? There is a very good chance it will. Fingers crossed!

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Posted: 06 February 2012 10:20 AM   [ Ignore ]   [ # 11 ]  
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When I lie flat on my back, it actually hurts my back, neck and head. I get a lot of pressure in my head and it feels really heavy to pick up. Some mornings I have to pick my head up with my hand or roll over. I always fall asleep on my side but for some weird reason, I always wake up flat on my back with my ankles crossed and my hands folded over my chest. I feel like I am preparing myself for burial or something. My arms do go numb and feel tingly as if they have fallen asleep. Sometimes when I faint, I will feel paralyzed when I first come to and some mornings when I wake up or when I wake up randomly in the middle of the night. I also have a lot of occular pain. It seriously feels like someone is trying to squeeze my eyeballs out of my head from inside my head. My eyes, nose and lips are almost always swollen when I first wake up as well. I have this headache that feels like I had been swimming all night and took water up my nose somehow.

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I have POTS, NCS/NMH, IBS, GERD, GP, erosion of esophagus, hiatal hernia, cholecystitis (will have gallbladder removed on the 27th), microulcers, degenerative change of spine, levoscoliosis, anemia, recurrent bladder infections, polyuria, atypical complex migraines, osteoarthritis in lower back/hips region, hypermetropia, restless leg syndrome, alternating insomnia and hypersomnia, and I will be tested for EDS on the 21st, which I am sure I have.

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Posted: 06 February 2012 08:01 PM   [ Ignore ]   [ # 12 ]  
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Melania - 14 December 2011 11:35 AM

I"m not sure if I’m posting properly but here it goes.  I am not diagnosed yet with anything other then a possible pain disorder.  That is bull:)  I believe along with two other doctors that I have pots.  It all started 3 years ago,ugg, when I had a rotational adjustment by a chiropractor.  I went home feeling odd and then by that night I could not move.  I was stuck in bed with extreme dizziness, extreme nausea, extreme weakness, I could not move my right arm.  Lasted 3 days.  Then for a year and a half I had spells.  ALl the time, to the point of going to emerg.  Normal results everytime.  Wasd rear ended a year and half ago and been 10x worse since…Does anyone else know of their pots being caused by neck injuries like these.

Yes, indeedy! do you know if you have EDS? I have some videos to talk you through that… but YES, I know of a few personally. If you are on YouTube, check out DebraDebbieDeb—she and her daughter started out symptomatic after a car crash. They figured out they had EDS (likely) from the videos. I’d recommend you “marry” this website for a while and see if you can narrow down what is going on, and I think Parts 1 and 2 of The Driscoll Theory will fill in the blanks for you. I’m wondering in you have symptoms of increased intracranial pressure? (in the vids!).
Big hug, my friend,
smile Diana

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Posted: 06 February 2012 08:04 PM   [ Ignore ]   [ # 13 ]  
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neartpuppy - 14 December 2011 03:39 PM

Oh my! Absolutely! I can never sleep on my back. When I fall asleep flat on my back I often have episodes of sleep paralysis, where I seem to wake up, but cannot move, feel very panicked, and want to scream but can’t, and am still asleep somehow, but it feels very much as though I’m awake. This never seems to happen when i lay in a different position, so I just avoid sleeping on my back now. Also, if I wake up but stay lying flat I will feel as if there is a lump in my throat, and I will feel nauseous, but sitting up seems to help. It will lead to vomiting on the odd occasion, and is much worse if I don’t get enough sleep, and the sleep paralysis is also worse if I’m over tired.

neartpuppy!! That is EXACTLY what happens to me (and so many others). I posted the question on another forum, and got 90 responses (that is ninety). I asked the same thing of the MS patients. TWO responses, both saying, “huh?”). I think I’ve figured it out and am including it in Part 2. You are CERTAINLY not alone with this CRAZY symptom!
Big hug,
Diana

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Posted: 06 February 2012 08:08 PM   [ Ignore ]   [ # 14 ]  
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sarahdionna - 06 February 2012 10:20 AM

When I lie flat on my back, it actually hurts my back, neck and head. I get a lot of pressure in my head and it feels really heavy to pick up. Some mornings I have to pick my head up with my hand or roll over. I always fall asleep on my side but for some weird reason, I always wake up flat on my back with my ankles crossed and my hands folded over my chest. I feel like I am preparing myself for burial or something. My arms do go numb and feel tingly as if they have fallen asleep. Sometimes when I faint, I will feel paralyzed when I first come to and some mornings when I wake up or when I wake up randomly in the middle of the night. I also have a lot of occular pain. It seriously feels like someone is trying to squeeze my eyeballs out of my head from inside my head. My eyes, nose and lips are almost always swollen when I first wake up as well. I have this headache that feels like I had been swimming all night and took water up my nose somehow.

Sarah, I’ll betcha’ you have EDS/POTS, too! Just a feeling I have… ha. Have you had a CBC with diff? Happy to look at it (in about 2 weeks). Your docs should want this to check your kidney/liver function. Let us know?
smile Big hug,
Diana

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Posted: 07 February 2012 11:31 AM   [ Ignore ]   [ # 15 ]  
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I usually have a high white blood count and sometimes low red blood cell count. That is all they have told me about my complete blood counts so far.

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I have POTS, NCS/NMH, IBS, GERD, GP, erosion of esophagus, hiatal hernia, cholecystitis (will have gallbladder removed on the 27th), microulcers, degenerative change of spine, levoscoliosis, anemia, recurrent bladder infections, polyuria, atypical complex migraines, osteoarthritis in lower back/hips region, hypermetropia, restless leg syndrome, alternating insomnia and hypersomnia, and I will be tested for EDS on the 21st, which I am sure I have.

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