deeplyset Posted September 26, 2005 Report Share Posted September 26, 2005 A few days ago I collasped after attempted to crawl up a few steps. I obvious over did it and was having one of my "normal" spells but when about an hour or so into it when I was laying down my whole body stiffen (as if concrete was being poured into me) and my hand cruled funny and my face controted and I was kinda paralyzed. I couldn't speak either all I could do was gruggle. I could move my eyes around in my head a little and cry. When I did try to move I would twich. But nothing else and when people moved me my limbs would popped back to the place they moved them from... It lasted from about 20 minutes or so and then I slowly started to regain movement ability and speech slowly started to regain a little at a time... IT WAS TERRIFYING... I don't know what happen... I've been paralaze in my left hand and rigth side of face before but never like this before... Does anyone else know what this is??? I'm assuming it's just another POTS thing... It took me over a week to recover to a standing position again and I still feel a little funny...Help? Quote Link to comment Share on other sites More sharing options...
Ernie Posted September 26, 2005 Report Share Posted September 26, 2005 Hi,I paralyse completely for 5-10 minutes almost everytime I faint and doctors have not figured out what is the etiology.I am still on the look out to find the reason and I am getting closer to it. Quote Link to comment Share on other sites More sharing options...
morgan617 Posted September 26, 2005 Report Share Posted September 26, 2005 I started doing this a month or so ago, hence my hospital stay. What they did discover was my potassium is always pretty low when this happens, so I have been taking supplements and , keep your fingers crossed, no bad ones since. I take 10 meq twice a day. Hard on the gut, but ANYTHING is better than those awful things!!!! (On a side note, a shrink happened to walk into the room while I was having one and declared me mentally ill, even though they insisted I wouldn't have episodes unless there were witnesses and I was all by my lonesome, he wasn't expected to come back and I'd already seen my nurse for the one time I was going to that shift) I'm only telling you this, because of the responses you may get, but ask to have your potassium drawn especially after an episode. You are right, they really are gross and the worst thing is, you know everything that's going on and can't do or say anything....YIKES dontlikethosemorgan Quote Link to comment Share on other sites More sharing options...
Evie Posted September 27, 2005 Report Share Posted September 27, 2005 I started doing this a month or so ago, hence my hospital stay. What they did discover was my potassium is always pretty low when this happens, so I have been taking supplements and , keep your fingers crossed, no bad ones since. I take 10 meq twice a day. Hard on the gut, but ANYTHING is better than those awful things!!!!  (On a side note, a shrink happened to walk into the room while I was having one and declared me mentally ill, even though they insisted I wouldn't have episodes unless there were witnesses and I was all by my lonesome, he wasn't expected to come back and I'd already seen my nurse for the one time I was going to that shift) I'm only telling you this, because of the responses you may get, but ask to have your potassium drawn especially after an episode. You are right, they really are gross and the worst thing is, you know everything that's going on and can't do or say anything....YIKES dontlikethosemorgan<{POST_SNAPBACK}>They thought you were pretending for attention?how horrible!Did your other drs dismiss the shrinks claims or did they treat you differently after that?deeplyset, i have woken up paralyzed but aparantly thats quite common even in people without pots. Sometimes when its a POTS type thing i will not be able to get up off the bed for about 10 mins but i can wiggle parts of my body but i dont have the strength at that time to lift them up to move. What you experienced sounds horrible .... it could be agood idea to test potassium like morgan suggested or magnesium as thats supposed to help stop muscle cramps ... However i suppose muscle crams are not paralysis are they ... I hope you find some answers .. good luck! Quote Link to comment Share on other sites More sharing options...
deeplyset Posted September 27, 2005 Author Report Share Posted September 27, 2005 I saw the doctor (my neurologist) today and he said that they are probably a reaction from fatigue and hyperventiation where my body is not getting enough Carbon Dioxide. He said it is a type of condition but didn't tell me the name for it... He suggested that the next time it happens to breathe in a bag...He said the main characteristic is labored breathing and numbness around the lips... It could be caused by POTS or be in addition to POTS... I don't know...It's so comforting to know I'm not alone and that these whacked out things are happening to other people. Thank you so much for sharing your tips and stories... I will be thinking about the Potassium suggestions. Thanks... Quote Link to comment Share on other sites More sharing options...
morgan617 Posted September 27, 2005 Report Share Posted September 27, 2005 Evie, yes they said somatization with conversion disorder. And they asked me if I ever had them when I was alone. I told them I am alone all day as my son is in school and my hubs works 10 hour days 6 days a week, so duh, yea I have them when I'm alone. So then when he finds me in the middle of one, all alone and unable to put on the light, he says I have unresolved issues. (Yea, like cracker butt shrinks) The only thing is, with conversion disorder there are no physical findings to back you up. Well my heart rate goes from 60 to 180, my bp goes from 100/50 to 220/120, and my potassium dumps. Gosh it's great to be so insane that you have that kind of control over your body.... This is why I say get a K+ level to back you up....morgan Quote Link to comment Share on other sites More sharing options...
Evie Posted September 27, 2005 Report Share Posted September 27, 2005 haha yeh it amazes me when people think you are making yourself sick and you have that much power over your body .. you would think if you had that much power you would be able to make yourself healthy ... i dont know why people are so keen to assume we WANT to be sick ... its just irrational. *sigh*Glad your neurologist was able to give you some answers deeplyset Quote Link to comment Share on other sites More sharing options...
Sunfish Posted September 27, 2005 Report Share Posted September 27, 2005 just out of curiousity - morgan or anyone else - have any of you been evaluated for periodic paralysis? melissa Quote Link to comment Share on other sites More sharing options...
Ernie Posted September 27, 2005 Report Share Posted September 27, 2005 Hi,I asked my endo last week if he thinks I have periodic paraylis and he said no. I did not get tested for it.He said that pp is triggered by eating. I am improved with eating. Quote Link to comment Share on other sites More sharing options...
dizzygirl Posted September 27, 2005 Report Share Posted September 27, 2005 Hi.. I just wanted to add that I had an experience here not too long ago (maybe 1-2 wks ago?) where I had passed out and then could not move my body or open my eyes when i came too...I dont know what its from... I have had experiences of paralice (sp?? sorry cant think tonight!) during that night.. (ie.. making up not being able to move..) and first thing in the morning...They actually told you to breath into a bag? How are you suppose to do that if you cant move?geez... well I hope that they can find out what is wrong and help you....good luck Quote Link to comment Share on other sites More sharing options...
morgan617 Posted September 27, 2005 Report Share Posted September 27, 2005 Never heard of periodic paralysis. Just get checked out for the nut factor I guess. btw, for all who care, I got a card from the cardiologist office with my 2 week post hospital visit. I told them 3 times it had to a pm appt. So it's scheduled for 9 am. I called them today and unless I go to a DIFFERENT TOWN 1 hour from here, he can't see me till the middle of December. His office is 3 blocks from my house. So I said to heck with it. If he's that dang busy, I'm not interested anyway. Anyone you have to wait 3 months to see is waaaay too busy for me. I was actually going to talk to him about this paralysis thing because he was very interested in my potassium levels...so sort of a bummer igiveupmorgan Quote Link to comment Share on other sites More sharing options...
Sunfish Posted September 27, 2005 Report Share Posted September 27, 2005 (edited) i'm (hopefully) about to fall asleep, but thought i'd post some info re: periodic paralysis really quick...there are a few types; i was thinking of the hypokalemic variant in re: to some folks on the board, though obviously i'm not an expert! the key issue is that the K levels are low DURING an episode but not on a consistent basis otherwise. there's obviously more to it than that, but i'll save that for the explanations on the links.http://www.nlm.nih.gov/medlineplus/ency/article/000312.htmhttp://www.ninds.nih.gov/disorders/periodi...c_paralysis.htmhttp://www.periodicparalysis.org/g'night, melissap.s. morgan - sorry for the mess with the appt. i feel like i'm going through a similar rigamarole with trying to get in with a primary care doc here & it is SO frustrating! Edited September 27, 2005 by Sunfish Quote Link to comment Share on other sites More sharing options...
lthomas521 Posted September 28, 2005 Report Share Posted September 28, 2005 I started doing this a month or so ago, hence my hospital stay. What they did discover was my potassium is always pretty low when this happens, so I have been taking supplements and , keep your fingers crossed, no bad ones since.Hi Morgan:Has anyone measured your blood sugar level when these events happen? If you have an insulin surge, you will end up with low serum potassium. But the real problem might be the low blood sugar. Your brain cannot store energy, so if your blood sugar level goes down, you could experience symptoms of "neuroglycopenia." They include confusion, visual disturbances, seizures and/or loss of consciousness, or activation of the autonomic nervous system (heart palpitations, tremor, anxiety, sweating).The diagnosis of hypoglycemia is based on "Whipple's triad": (1) symptoms of neuroglycopenia, (2) measurement of a low glucose level, (3) relief of symptoms when the glucose levels go up.I believe that hypoglycemia is underdiagnosed. For one thing, it is relatively rare, so when doctors see a low blood glucose reading in someone who is not actually unconscious, they often assume that it just resulted from the blood sample being left out too long before it was processed (the blood cells consume glucose). If they believe that the results are not the result of laboratory error, they might suspect that the patient has surreptitiously taken someone else's diabetes medication in order to produce a fake abnormal result. They are particularly likely to suspect this in someone who has a diabetic relative or a background in health care. It does happen, but there are other ways to test for that! Best of luck. Quote Link to comment Share on other sites More sharing options...
persephone Posted September 29, 2005 Report Share Posted September 29, 2005 Hi everyone,I thought I'd chime in one this one as I've experienced paralysis a few times myself.When I went to London for tests, I was told that a rare type of migraine, called Familial Hemiplegic Migraine can cause heaviness/numbness/paralysis in one side of the body, and that it doesn't have to follow a typical headache- apparently it can happen without experiencing pain- so you literally just go numb and dopey and that's it.However--these past few days I've been bad again (stupid menstrual cycle!) and had 5 syncopal turns yesterday where I wasn't paralysed, but I had real tingling in my arms and legs. I rang my cardiologist for advice and he said that hyperventilation can do this.Now, before you say "no, hyperventilation isn't what causes this," and get defensive (as I myself did!), hang fire. Remember, if you run up a flight of stairs, you breathe faster to compensate for your heart beating faster, right? So, if your heart rate suddenly goes up for no reason, you will still breathe faster. Logical, isn't it. Well, my doc told me that if you breathe too fast, then it can cause something called hypoxia- from the Greek hyp (low) and oxia- oxygen etc. It means that there is too much carbon dioxide in the blood stream, and it overshadows the oxygen. This can cause tingling, shaking, spasms, even paralysis! Though it shouldn't last long. He also told me some other technical jargon stuff but I can't rmember it all. Something about calcium deposits or something.Anyway, the point is- hyperventilation, as a SIDE EFFECT and not a CAUSE of pots can be at the root of paralysis. I'm not saying it is in everyone, just that it might be in some people, or certainly might be made worse in some people. and the suggestion of a paper bag isn't that dumb- it's the easiest and quickest way to make this type of paralysis disappear because it rebalances the oxygen and carbon dioxide levels, and will get rid of any symptoms that a weird breathing pattern may have caused.I've been trying to control my breathing today when having a funny do but I'm still getting the tingles an some numbness- so I will probably have to get back to my own Dr and see what else he thinks may be up.But I just thought I could potentially offer some reassurance to some worried people, by passing on what my own Doc said to me Quote Link to comment Share on other sites More sharing options...
morgan617 Posted September 29, 2005 Report Share Posted September 29, 2005 Actually people have commented on the fact that I am not hyperventilating and find it weird, because i am, of course, a nutball who panics. My respirations are well within the norm and I don't ever get tingly, just paralyzed. lthomas, I have had my sugars tested twice during these and they were fine, something like 94 and 100. The only abnormalities are high white counts and low potassiums. My doc diagnosed me with sighing hyperventilation, that can't get quite enough air thing, but I find that is much improved on the potassium too. Of course you use muscles to breathe.I did find that periodic paralysis really interesting. For years now I will wake up in the night not able to lift my head or move my arms, but always blew it off as being half asleep. It would certainly explain a lot. Very interesting...... Quote Link to comment Share on other sites More sharing options...
persephone Posted September 29, 2005 Report Share Posted September 29, 2005 It's weird you saying that Morgan, because sometimes I still get the tingles and stuff even when I try and breathe slowly and deeply! I wonder if breathing too deeply could cause the same symptoms, or whether we two are just unique! Quote Link to comment Share on other sites More sharing options...
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