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Another Bad Paralysis Spell


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hi folks

i had another really bad paralysis episode last night.. boy it was not cool.. I was laying down taking a nap yesterday evening.. I'd only been sleeping maybe an hour and half.. and I woke up paralysed i was laying there and I felt totally weird.. and irelaized that i couldnt move or speak.. but i could move my eyes and i could think.. my boyfriend came in about the same time I woke up.. and told me that it was about 7:45.. and that my show was going to be on soon. i was trying to look at him.. and it was like I was looking thru clouds or fog or something like that..

he stood there talking to me.. and i wanted to some how let him know that i couldnt move or talk.. i vaguely remember trying to blink and trying to move my arm.. and i couldnt.. he walked out the room and said come on get up.. i couldnt..

i was alying there.. and the humming in my head got very loud.. and i got a weird feeling in my body.. and the pain was getting bad with in my bone and my muscles.. I felt like I was being stung by bee's again... not cool--and at one point I poked my left arm and the rest of my body.. and everything felt rubbery.. like I have no bones!! seriously that is how it felt.. scary

I think I passed out..b/c I floated out of my body.. and was like above myself. I never get used to that.. its weird and scary..

I'm guessing about 30 minutes later i'm still not up.. my b/f comes bak up stairs. and asks me if I'm going to get up.. I can finally move my right arm and i can talk some now.. and I told him i cant move..except for my right arm.. and he said "oh is your body asleep?" and he turned around and walked out of the room!!! :)

and he went down stairs and turned the TV on and turned it up full blast. we have surround sound.. so it can get really loud.. and he left me there.. just left me there.. unable to move.... after a while I regained some feeling in the rest of my body.. and was able to get up.. but i was ahving alot of trouble walking..and was very unsteady.. and my pain level was getting more and more intense .. to the point that i was crying..

everybone in my bone hurt.. and felt like i had sprained it or fractured it.. and my bones felt like they were going to shatter at any momemnt.. and my muscles burned badly.. and felt like they were tearing apart..and the stinging.. was bad.. I was super cold.. from the inside out.. and was shaking.. and felt like I had a fever..

afew hours later my pain level was even higher.. i finally asked my b/f.. I'm like wouldnt you be concerned if somebody told you that they cant move? I'm like I was having a paralysis episode.. and i needed some help.. why did you walk away!?

he said nothing and he walked away again.. and ddint barely say 5 words to me the rest of the night.. I'm wondering if he just doesnt care.. or if he is in some kinda denial thing?? any one have problems with there b/f or hubby when you have a syncope spell or something??

I'm still in a great deal of pain today.. and am going to the docotors this afternnoon.. hopefully they will give me something for the pain.. that would be great..


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Hi Linda,

It's hard to say from your text if your boyfriend does not care or is in denial but one thing for sure thre is a major problem. You cannot rely on him at all to help you. It's worst than living alone because you expect him to do something when you have an episode.

Keep the phone close to your hand so that when you unparalyse you can call someone reliable.

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Guest Mary from OH


I can SOOOOO totally relate!!! Did you by chance have a migraine when this happened? Did you take any migraine medicine to relieve your migraine?? The reason I ask is because a similar thing happened to me twice in one week! And I had a DH who didn't care too! But, I won't get into that. Only I was "only" paralyzed from the waist down

I was evaluated top to bottom (supposedly). First, they thought migrainous stroke, then MS, now maybe sleep paralysis.

I feel for you. It is a terrifying feeling!!

I was paralyzed EXACTLY like you after giving birth to my daughter. I also had (been forced to have) an epidural. I think my body did not react to it well.

Take care of yourself. It took me almost 6-8 weeks to feel totally "myself" again. PM message me if you want!!

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Linda I've had this too- have you been tested for hemiplegic migraine? Don't worry- I'm sure your boyfriend isn't being callous- he probably just doesn't understand how bad you were.

One of the things that is fundamentally ironic about our condition is that the worse we get- i.e- the more we faint-0 the less people worry. You see how people react to someone who never faints- and they are in total panic. It gets to the point with us that people will just say "oh, that happens a lot, don't worry" and perhaps not gives as much time/concern as they should. Do you think this could b the case with your boyf?

I suffer from paralysis episodes thru hemiplegic migraines and they get pretty bad, but it doesn't take me 8 weeks to recover; more like 8 days. I hope you are like me and can get yourself together soon.

But do go and get this properly investigated.

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I am so sorry.... I hope you are feeling some better. It is scary sometimes when our bodies freak out, especially when no one gets it...docs, family, husbands etc.

I think sometimes people dont understand so they shut down or get offensive or react in their own 'special' way. People are inherintly afraid of what they don't understand... Be it animals, nature, health or people.

That is my theory...I know it does not help make it easier to take when you are the subject of the reaction...How I wish people around us could live thru one decent to bad episode happining to them, so they could understand...

Sending you hugs!!!!!

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I've never had parylasis like you describe, but it sounds awful! I agree with Ernie about keeping a phone by your side in case that happens again, at least until you can rely on your man a bit more. Also, it might be helpful for you to talk to him about what happened. Let him know that you were hurt when he didn't respond with compassion. Perhaps next time, he'll be more helpful and sensitive.

My boyfriend and I have a way of grading my symptoms so he knows when to worry, because me saying "I don't feel good" is NOT a good indicator. We use the hospital style 0-10 system, 10 being unbearable/life threatening symptoms like inability to breathe, tachycardia over 200 bpm, or Bradycardia under 40 bpm etc. and 0 being "normal" (for me). Some nights, I'll interrupt him and let him know I'm at a 5 or 6, and he knows to keep a close eye on me. When I reach 8 or 9, we to to the ER. 10 means a call to good ol' 9-1-1.

Perhaps you could adopt a similar system?

Anyways, I hope you're feeling a bit better today! I'm sending you a card to cheer you up :)



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hi folks

thanks for the support!

I just got back from the docs..she is going to call dr.g to get things going on getting the MRI from head to tailbone.. and she also mentioned having another EEG.. (which I'm allready set up for).. and a possibly EMG.. she wants to check for muscular dystrophy? or some kind of muscle disorder..

and the bone pain jesus it ***** big time..there really is nothing that we can do for the pain.. nothing really relieves it- or even mildly touches it...

um MRI they are going to be looking for Chiari type things/brain stem compression.. she was like wow! i havent heard of chiari malformation since med school!!) they are also looking for disc herniations.. and old fractures in the spine and stuff.. that healed..herniation aside from what we allready know is there...

And I plan on sending the MRI results and actual scan out to the chiari Institute for a neuro to review.. before I spend money i dont have to go there.. so that is the plan..

Oh yes.. and we are going to get things set up for me to get an aide.. since as of tonight I will be living alone! I'm taking my wheelchair iver to my apartment tonight....

my regular nurse who ususally sets me up for an IV wasnt in today.. so I have to wait till thursday to get an IV..

about my b/f.. i think that that is how he reacted (now that i've had time to think of it).. more out of fear.. thenany thing else.. he is always afraid that I'm going to die.. I've told him many times that pots is not giong to kill me.. but he has found me here at home unresponsive one to many times I guess.. and still worries...b/c lets face it paralysis is scary any way you try to turn it..

but ok I'm going to go lay back down..



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I am glad your Dr is ordering all those tests - my goodness I'd e freaking out if that happened to me! I have no advise or way to relate to paralysis what so ever, but just wated to say that I am thinking about you and good luck...

:):):P cheers!

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Guest Mary from OH


Please do let me know what you find out. I had MRI's on my whole spine too. And an EMG too. For me, they were checking for MS. I already have peripheral neuropathy and neurogenic bladder, among other symptoms.

Did you have a migraine when you went to sleep?

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hi ya mary

no I did not have a migrain when I went to sleep.. shortly after I come out of the paralysis though I had alot of pressure in the back of my head and neck...i had a potsy headach. which is pretty common after something like that for me..

i have a history of pretty severe migraine at times.. but was not ahving one yesterday.. though i've also ahd painless migraines.. where I just have aura's and things.. but I didnt have that either..

I know that last summer i was admitted to the hospital with one of the worst migraine i have ever had.. and it casued alot of problems then...

I'm hoping that he MRI will show something .. a casue for these things to be happening.. a fixable one. not that i want anything t to be wrong or anyhting.. but I want the pain.. and scary things to stopp happening to me!! :D

I'll post when i know about the MRI results.. its going to take a bit of rangling though doc is going to ahve to fight witht he insurance company to et them to apy for it!!

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Guest Julia59


I'm so glad your going to get the MRI done---and hopefully you'll have some answers.

You already know I gave you the talk about being careful regarding chiari/spine issues, that they are not always related to the POTS issues. BUT---In your case it can't hurt to try everything possible to find why you are doing so bad---especially the parylasis issues. Pretty scary stuff. Some of the things you have had to deal with would make me very scared-----you have handled it like a trooper.

When I saw that hump in your upper spine, I just wanted to cry. I can only imagine the pain you must be in.

You keep hanging in there----I'm sorry you have been having such a hard time.

I hope your next appointment with drippy goes well---and the it helps you feel less symptomatic.


Julie :0)

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