February 7, 2012 at 12:31 pm #1729sarahdionnaParticipant
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.February 19, 2012 at 8:02 pm #1751MJParticipant
I wake up often in the middle of the night hallucinating (my eyes are wide open & I am awake) and the interesting thing is, it is only if I wake up while laying on my back. I do not hallucinate when I wake up on my side. Also, many times I have touched my face and forehead (while hallucinating) and they range from cold to ice cold. Otherwise, laying on my back just does not feel right unless I have a pillow rolled up under my neck and the Acuball under the thoracic area of my spine. I feel like I can breathe deeply when I use the Acuball to fall asleep.February 22, 2012 at 5:16 pm #1764PalominoMorganParticipant
Here is what happened to me last Friday/Saturday morning after laying down for 20-30 minutes.
. I have succeeded in avoided the ER except for one trip in 1996, one in 2005, and now I have been 3 times in 2 or 3 weeks.
Friday night/Saturday am around 2:30 in the morning I was unable to move or respond to my girlfriend. At first I thought “oh I’ll just not answer her” as I laid in bed. Then, she asked if I was ignoring her, then said my name, that’s when I tried to answer her a little and couldn’t. She came around the bed and just stared at me. She kept saying my name in a panic and I was trying to talk but apparently all I could get out was “huff, huff, huff”. She later told the ER doctor it just sounded like I was having a bad dream. (My eyes were closed.) Eventually she poked me on the shoulder and said my name. That ticked my body off and an adrenaline surge ran through me and I started having spasms and seizure like activity. I’m sure all she could see was my right hand jerking, but my legs and back were all jumping too under the blankets in tons of mini spasms. She poked me enough and eventually I was able to get my right index finger to move. I pointed at my head and tapped my forehead trying to say “me”. She was making wild guesses, none of them remotely close. I was tapping my head and pointing down my body trying to tell her to pick me up. She was asking if I needed loratabs or something from the living room. In my head I was like “OMG… you suck at charades! Just shake the ____ out of me already!”
Eventually after minutes had passed and she was just panicked wondering if I was dying on her “my breathing was rapid, then shallow, then nothing for 10 seconds, repeat) I was able to barely force out the words “me…… up” She repeated them and tried to process what I wanted. She finally got it and I tried to nod. She then goes to move my legs which I had to groan “nnnnhhhhh” because I was seized up and it HURT. She came and picked up my upper body and sat me up.
Once I was up about 30 seconds I could talk but I was still seized up. I said “blood pressure” since I KNEW what was happening. She hurried up and put the cuff on, hit the button and said “holy S__t!” I was still cognitively confused and said “high or low?” She said “VERY low. 72/56” My next words were “very cold” and “phone”.
So, I called the PCP emergency number, tried to coherently talk to the on call dr, and was advised to go to the ER. After hours of being at the ER I was diagnosed with “near syncope”. I had been given fluids, told my potassium came back a little low, so I was given potassium, and was sent home and told to follow up with my PCP Tuesday. I already had a follow up appt set to go over my trip to see Dr. Henderson last week.
I had this weighted dream happen as a kid where I couldn’t move and it didn’t freak me out, but as an adult this was SCARY. It honestly wasn’t scary until I tried to move though. Until then I was in my head thinking I was just VERY VERY tired and really wanted to go to sleep. It wasn’t until I tried to respond and couldn’t that I was like “ut oh”. Then when I couldn’t MOVE and starting having spasms/seizure-like activity I just knew I needed to be sat upright and wondered how long it would take my gf to figure that out. I wonder what would have happened if she hadn’t checked on me or if she hadn’t been there. I think throwing myself out of bed might have helped break me out of it but I couldn’t even move to do that and what if I hit my head or hurt my unstable neck trying that trick (even if I could do it.)
I put my bed on blocks last night and figure it can’t hurt, but I see a “Come to Jesus” meeting coming with my PCP on Tuesday when I have to tell her what happened. You can only fool yourself and she can only fool herself for so long before reality starts getting pretty damn scary.February 26, 2012 at 5:39 pm #1768judithParticipant
I´m kind of scared now, cause i read all the things you were writing. I have EDS, hypermobility type, but I never thought, I would have POTS, even when I already heard that many people with EDS have POTS too.
But when I read this, I found that it´s exactly what I experienced several times.
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.
I never thought that it has something to do with my position while sleeping. It usually happened when I took a nape in the afternoon. It never really happened at night (luckly, it would scare me even more). Sometimes it´s like I want to move, and I think that I really did, but after a few seconds I realize that I didn´t move, and than I try again and it doesn’ t work. If I try harder and harder I start to panic, cause it doesn´t work. If I stop panic (which is hard 😉 ) and also stop trying to move, this scary thing stops after a while. I don´t no If it stopped after I was able to turn on my side. How do you guys get out of such a situation, except from someone is picking you up?
Since this seem to be a part of POTS and not only EDS I´m kind of wondering if I might have POTS aswell or some of the other conditions which were mentioned her. How do I find out? Is it possible to find out If I have POTS without having this tabletest done?
I´m living in Europe, so some things you recommend might not work here. Actually it was hard enough to get me diagnosed with EDS (took me 7 years of searching ). I don´t think it would be ever possible for me to be tested for POTS or anything like that or even try the diamoxthing. Any advices?
Thanks and bye byeMarch 9, 2012 at 6:01 pm #1809MJParticipant
I didn’t think I had ever experienced anything like that, but I forgot about an episode that happened about 3 years ago. I was laying down on my ND’s (Naturopathic Doctor) table, and she was asking me some questions. Suddenly I couldn’t speak and I couldn’t move. I didn’t blink my eyes for at least 5 minutes, and they didn’t even tear up. I remember she just kept calling my name trying to get me to respond. But that was my only experience in that regard.April 1, 2012 at 2:06 pm #1927MattiesMomParticipant
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.
Whoa, I experience this! For me, it is hard to lay on my sides though, because my shoulders roll under and hurt my shoulder blades. My shoulders have no stability at all, and I have severe chostochondritis from dislocating my ribs on a regular basis… so I think my body just ends up on my back to try to protect my ribs. I wake up with my arms crossed over my chest (burial style) and numb extremities gasping for air, feeling nauseous, dizzy and panicky like I am falling. I also have to use my hands to lift my head that feels too heavy for my painful neck to lift. This amazing to read that others experience such similar symptoms.~MatttiesMomApril 22, 2012 at 8:39 pm #2033BarbaraParticipant
I’m new to this forum, so I’ll say ‘Hi’ to you all. My name is Barbara, I am from the UK and I had an accident in 2002, where I fell backwards and smashed my head on a low stone windowsill, about a foot off the ground. This sharply twisted my neck to my left and forced my head forwards. I had a miriad of symptoms, some immediate and some which crept up on me very insidiously and, as this forum topic is about paralysis, I would like to tell you about my experience of it and, more importantly, how I stopped it. It has definately been the most horrific of my symptoms.
Within a short time of my accident I started to experience intermittent tingling in my hand, at first I noticed it during the daytime, in particular, when I was stationary in traffic. There were two things that eventually became apparent. The first was that I had to have my hands below my heart level, in order to avoid having ‘circulatory’ hand problems, so I had to keep them low on the steering wheel when driving. The second and probably the most important thing I noticed, in relation to what was to come, was that looking down (with my head in flexion) had something to do with the tingling.
Now the intermittent tingling that only started in one hand during the day, started to affect me at night when I was dropping off to sleep and I was waking up with it too. As if it wasn’t enough to wake up cold and clammy with my heart racing and gasping for breath !
Eventually, over the weeks and months, the tingling started to affect the other hand, then it began to spread up my arms, then it started to affect my feet as well, then up my legs, after some months it had spread to my lower abdomen. I was scared and no-one in the medical field was helping me. The trouble was that by the time I was up and out of bed it dissipated, so no-one ever got to examine me in this ‘state’.
This was was only the tip of the iceberg, little did I know what was to come. It continued to spread, affecting more and more of my body, over time the tingling turned to numbness, it even affected my scalp, then my tongue. When you wake up with everything numb, including your tongue with your lips pursed and barely able to utter a sound, you know you’re in trouble! This was happening 3 times a night. I was waking up every 2-3 hours in this state. It didn’t stop there, the tingling that had progressed to numbness had now progressed to excrutiating pain (the worse you could possibly imagine) and the only way I could get out of this state was to move each muscle individually, VERY SLOWLY – which worsened the pain!!! It was taking me 40 minutes to get up out of bed, to get rid of the pain – every 2-3 hours.
I noticed that, during the day, so long as I was moving, I seemed relatively ok, other than the hundreds of fasciculations (muscle twitches) I was now getting, everywhere. Also when I slept during the day, the symptoms weren’t as bad, was it because the room was warmer, or was it down to position? Being an analyst I decided to study how my symptoms reacted to different sleeping positions and I found that each position had different effects on my symptoms but I found that sleeping more sitting up was the best. I was sleeping more upright on the sofa, during the day.
One very important observation I made, was that when I woke up feeling dreadful, my chin was also right down onto my chest, not a position I particularly remember being able to achieve before my fall, this was the key. Another observation I made was that my urine PH was so low it was nearly off the scale. Now after 5 years of enduring this (how I managed to survive it and retain my sanity, I just don’t know!!) I managed to get a referral to Spinal Injuries and they fitted me with a Philadelphia Collar and Brace – WOW the pain reduced to a 3/10 OVERNIGHT and I actually slept 5 hours solid, for the first time in YEARS.
Over time, lots of things started to heal, the arrhythmias became less, the fasciculations were less often, less intense etc, it was marvelous. I would never have thought that, after being so ill, for so long, that I could ever recover to that degree from it. I still have a long way to go but I can witness that the body is an amazing piece of engineering and that, given the right help can repair itself, given time. Let’s hope that Dr Diana’s hard-working efforts can be the start, or a continuence of the healing process for us all, that we can start to participate in life again.
Barbara (UK)May 18, 2012 at 6:37 am #2179LisaHParticipant
I’m new to this forum. Officially diagnosed with neurocardiogenic syncope or postural hypotension, but I’m sure I have POTS (get the heart rate increase between +30 to +70 bpm from lying to standing)and all the classic symptoms, but don’t think my doctors know what POTS is and they never check for it- only interested in my blood pressure and only do sitting to standing which doesn’t show as much change. Wondering too about whether I have a form of Ehlers Danlos or not? Anyhow…my biggest concern at the moment is the symptoms I am getting lying down. I have had similar before on occassions when I have been really unwell, but 2 weeks ago I was having them almost every night and some nights very bad I didn’t know if I was going to make it. A while ago I started getting symptoms around half an hour after lying down and this would always baffle me as to why this would happen and I’d had the symptoms when you wake up feeling like you can’t breathe/suffocating and your heart races initially, then you come right. It’s amazing reading the Driscoll theory as it is making so much sense to me. Not sure if I have Ehlers Danlos or not, but it is what has made the most sense to me of anything I have read so far. I do have large styloid processes on both sides of my neck so wondering if this is contributing too? I have had occassions when I used to wake up paralysed and this was so scary, but I think it was when I was on the Beta-blocker at night and I’m guessing it was making my already low heart rate even lower and causing these symptoms, very scary! Sometimes when I lie down my heart rate and blood pressure will be on the lower side- 90-100/50 and HR 50-60 with the symptoms. The other week I had a heart rate of 43 but my blood pressure was up- 160/100-110 while resting, this was strange, but happened 3 nights in a row. Felt very weak and faint while lying down and like you are about to go unconscious. The only thing I find that helps is having a strong salt drink and few glasses of fluids and I have found on occassion sitting up does help. I have also taken an antihistamine when I get very bad and it has helped too (never knew why, but now wondering about mast cell disease??) I had a very bad night after getting engrossed in my sewing for a couple hours. Sitting up in one position like that for so long makes the orthostatic intolerance worse. I laid down and felt very unwell, faint etc and my breathing got very laboured and slow and felt like I couldn’t breathe properly, feels like my diagphragm muscles were not working properly. I rang the ambulance but it was even hard to talk to them I was so weak. I’d had a litre of fluid before bed,because I knew I’d overdone it and I started to come right about 5 mins before the ambulance got there. Was still very weak, but improving when they arrived. One other bad night it felt like my breathing was about to cut out and my speech too and swallowing, was awful and I thought I was not going to make it. I was waiting for the salt water to kick in, then I was shaking and cold for about 20 mins and very confused and groggy. My husband keeps talking to me, telling me I’ll be ok soon, but I’m scared that what if it doesn’t work/kick in one day? Wondering if this is life threatening as it certainly feels like it. After the fluids kick in I start to come to, but I am very weak for a while until I eventually fall asleep. These symptoms really scare me and I have told the doctors and went to emergency the other week as my blood pressure had been up for 3 days (unusual for me) and the bradycardia and breathing issues lying down. The doctors do not seem to understand how bad it gets, thought I was close to having a stroke. Sometimes sitting up will help, but sometimes I’m also very dizzy when I sit up. Have had to crawl to the bathroom a few times- one night after exercising I could not sit up for a few hours, was so dizzy and almost fainted. Had to sit up in small increments. Does this sound familiar to anyone out there? I’m going to see an autonomic specialist in a few weeks and having another MRI next Monday, so will see what happens from there, Thanks any advice would be appreciated! I have tried the coffee before bed thanks Dr Diana and it does seem to help, thankyou! I take the salt and fluid too and antihistamine and this helps too. Thankyou, Lisa
Just thought I’d add that often when I am almost asleep, I’ll wake up with a jolt/gasp and every time I try to fall asleep again this can happen up to say six times in a night when I’ve had a bad POTs day. Last night I woke up a few hours after being asleep and I felt very unwell and my face felt swollen and numb and like I wasn’t getting proper circulation and felt like I would pass out. Other times I have woken and found it difficult to lift my arms and upper body feels heavy and numb like lead. I sleep with 2 pillows at the moment, but seem to end up in some weird sleeping positions sometimes with my neck bent.May 28, 2012 at 12:06 pm #2234TennilleParticipant
Hello everyone 🙂 I’m new here to the forum. My name is Tennille. I wanted to quickly chime into this thread really quick because for many years I have had this paralyzed issue and have asked so many people, docs, others with my diseases, what it is, if any others experience this and what is causing it, but to no avail. I have not had anyone who could relate, even on dinet. Imagine my excitement when i read this!!!! Someone has experienced this too perhaps?? I was too excited not to jump in even though the thread is a few months old and im new here 🙂
I first thought perhaps it could have been an autonomic attack or seizure (but the paralysis could be long term, going into days, weeks). Here in the past year or so, I was thinking it could be anaphylactic shock. But I still have no clue.
I don’t seem to have real issues though when lying on my back, UNLESS i am in a flare up. When I am in a flare up, I have to lay on one side or the other, sleeping is the same. If things are in control, i can fall asleep on my back but eventually i sleep most all the time on one side or the other. But again, in a flare up, yes, i find it every challenging to lay on my back and I also feel like things seem so skyrocket in the symptoms, which gets a tad scary, hence, why I stay on one side.
Back on the paralysis, mine would be so bad that yes, i could not speak. I couldn’t even move my lips or lift my head or lift a finger or barely keep my eyes open. I wasn’t sleepy and I was coherent and could hear all that was said, but there was no possible way I could respond. Now that, is scary. I spent 3 days straight in the hospital due to one of these attacks that kept repeating itself, but that time i was ‘stuck’ in it for days. No one could find anything wrong. Gradually, i would come out of it, but several times I have felt like death was near, cuz during these paralysis spells, i cannot breathe….. as if my diaphragm isn’t working or the muscles are paralyzed themselves and i have to solely concentrate with all my might on the breathing. I usually pant like a dog too during this.
I haven’t read through this entire thread, as I think I am in a flare up, but feeling a tad better each day, still requiring loads of rest though.
Thank you everyone….. i’ll go back and read through the thread in few when i rest up for a few. 🙂
~tennilleJune 27, 2012 at 11:38 am #2489Special KayParticipant
First off i’d like to say hi to everyone as i’m new here.
I deliberately looked on this forum after buying a copy of the Driscoll theory and found by pure accident something that rang a bell.
Since the age of 18 i suffered with what drs thought was some kind of epilepsy (thought to be unrelated to the EDS 111 i was diagnosed with at 32)but all the tests for epilepsy came back negative/inconclusive. I always had this when i was in bed and sleeping on my back. I would wake up, feel like a wave would travel up my body very quickly and then i would be paralised. I would try to shout for help in a total panic but all i could do was make clicking noises as i tried to speak (whitnessed by my partner)and unable to breathe. I would panic to turn on my side somehow thinking that would break the paralisis but never managed it. I would then start to hallucinate either with or without my eyes open (aliens and my partner with pixie ears may seem funny now but at the time it really wasn’t haha). I’m now 43 but haven’t had a problem with it for a few years now. I thought it was something i’d just ‘grown out of’ until i came across it in the book, now i realise it’s probably because i haven’t slept on my back for the same amount amount of time.July 6, 2012 at 7:17 am #2544Give My Daughter the Shot!Participant
I can’t effectively sleep on my back because what’s the point of sleeping anyway – it’s not like I’m going to feel rested – Just Kidding! The reason I struggle to sleep on my back at all is because of ‘my tail’ (a massive knot of bones at the base of my spine which prevents me from lying flat). I am not sure when the last time I slept on my back was.
Now, regarding ‘FREEZE DREAMS’… I’d never been to the doctor for my ‘freeze dreams’ since they occurred during my teenage years and into my twenties (maybe up until 30 but not sure about that). While they were terrifying and I was certainly completely paralyzed, I never considered seeking medical assistance. I did, however, inquire of friends and they had feeble ideas or no ideas at all. Not a huge deal since they didn’t happen often. Believe me, a healthy person (which was my identity) is not going to give much credence to a bad dream. I am not sure how often I slept on my back at this point and it may not have been very much. I don’t remember noticing ‘my tail’ until after I was a teenager or at least late teens. If anything it has become more bothersome with time, ‘my tail’ that is.
During these ‘freeze dreams’ I once dreamed of Freddy Krueger hand (complete with blades) coming down toward my forehead but couldn’t wake myself no matter how desperately I tried. I was completely paralyzed in every way. I remember trying desperately to move and it was weird because I was also awake. Anyway, you can imagine why I might have overlooked the paralysis portion of this as a teenager and been more impacted by the Freddy Krueger portion.
Other times that it happened weren’t necessarily nightmares, however, I always thought of them as a sort of nightmare since the abovementioned is the first one that I remember having and I always remembered it so vividly. The other times I recall desperately willing any part of me, (specifically my pinky which was so close that it was practially already touching my partner) to move just a teeny teeny bit and make contact with my partner so that I could be ‘wakened’. I was never able to establish contact. Absolutely no vocals and, while struggling with such desperation, don’t even think I was able to breathe heavily or squeak or anything. I wanted to do anything to attract attention to my mere existence and remember thinking that if I could be touched, I might ‘wake’. I was just ‘suspended’ and ‘invisible’ and could do nothing about it. I may have ‘awakened’/snapped out of it/come to with an abrupt gasp but am not positive. I was just so darn grateful to be out of it. I still thought of this experience as a ‘freeze dream’. I’ve never heard of it before nor has anyone else. I am not sure if this is the same as this post.
I was actually awake or more than subconsciously aware of what was happening. Maybe trapped of suspended in some state of being type feeling?? I was completely paralyzed and aware that I was desperate to be rescued/’awakened’ from my state of being (which I labeled as a ‘freeze dream’). No couldn’t speak, or I would have. Could not make a noise or a move whatsoever – not even the slightest – even though I TRIED LIKE MAD!!!
I haven’t read this whole post but will review to see if y’all have been having ‘freeze dreams’ too. I’ve never heard of anyone having any idea what this is. It happened other times but I don’t remember them so vividly. It didn’t happen ‘all the time’ or anything. OH, the times that I mention and recall were definitely on my back!! Trapped and paralyzed while on my back!!September 9, 2012 at 12:16 am #2885dancechick4728Participant
I always feel sick after laying on my back… When I lay flat on my back I get light headed and the longer I lay flat the harder it gets for me to breath… I feel like there is an elephant on my chest. But the real problem is when I try to sit back up. The longer i lay the worse the dizziness is when i sit up. I have been known to pass out after laying to long many times. I have also experenced those paralyzed moments 2 or 3 times before i didnt know what was happening so it was very scary and it only happend when i ended up sleeping flat on my back i felt like i was awake and wanted to scream but i couldnt. I now sleep with 7 pillows, practicly sitting up to make sure this never happens again!September 30, 2012 at 6:27 pm #2976JewelsParticipant
What an interesting topic! Since being a small child I have hated sleeping on my back. I feel like I can’t breath and have a general cruddy feeling any time that I do. I almost always sleep on my sides, but sometimes on my stomach. I had to have two different sleep studies and they were a bit irritated that I couldn’t sleep on my back. If I had realized this was an issue for us I would have forced myself to lay on my back for a while to see if they could pick up anything with their equipment. Two birds, one stone. Shucks!November 15, 2012 at 1:47 pm #3138JoannParticipant
I don’t often sleep flat on my back, mostly prop myself up so I am more half sitting, sleeping. But during my worse time last May, it was difficult to find a position that didn’t make me feel ill. I did have a time where I would feel like I couldn’t move and my throat was closing up, I couldn’t talk, tried whispering to my husband and that was difficult. I slept with a container with straw and would sip water, and throat would open up a little. But I would feel like I had to stay completley still and as if my I was choking. I wasn’t sure if it was the health problem or side effect of new meds. Very scary.
Recently I had the tilt table test, and when they put the table back down, I felt much worse. I thought my heart was going to burst. The technicians thought maybe I got a last burst of medicine, but I think it was the position, along with the heart racing, the back of my head felt full of pressure. When I sat up it was better. Maybe I will try lying flat and seeing what happens again. But I was told not to lie flat, because it makes it more difficult to get up in the morning.January 1, 2013 at 7:56 am #3279NompancakesParticipant
I’ve had this exact same problem off and on for years. When i was 8, i had a dream that i wanted to get out of so i woke up but i couldnt open my eyes, breathe or move for a good 10-15 seconds. After that, its happened around 4 times since then. Im starting to think i have eds. XD last night was bad. I went out for new years eve supper and then saw the hobbit afterwards nd during the hobbit my mouth was so dry i had to keep licking my lips and i knew i had tachycardia even if i took my atenolol pill 2 hrs prior. Anyways i got a tad dizzy too and decided after the movie i was gonna go home and go straight to bed after a nice glass of water. My left foot was red and swollen too. This happens to me a lot. Not sure why.. So i was gonna lay on my back to sleep so the swelling would go down. I kept waking up right as i wuld fall asleep feeling numb, weird and really thirsty. At one point i call for my dad to feel my forehead because i felt hot but no fever. I felt like i was in a weird trance. My tachycardia was bad throughout the night too. Rest was 100-115 bpm.
Also at night, i sometimes get a low rumbling in my left ears like a truck in my distance rumbling away. It hard to explain. It only happens sometimes when im laying down.
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