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Need some support


avais1
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Hello, and Happy New Year to all! I hope this e-mail finds all of you doing better than I am. After a long respite, I had a doozy of a POTS attack the other night, and had bad symptoms for a few days following. It had been so long, I forgot how terrifying the spells are. However, this one was particularly disconcerting, as it happened in the middle of the night, AND I WAS LAYING DOWN. In fact, the only way to stave off the severe nausea was to hold absolutely still. Even turning my head would set my heart off. I had it all, the severe nausea, the rapid heartbeat, sweating so much (and everywhere) I was swimming in it, panic, dizziness, etc. I couldn't get away from it, because I was already laying down.

I am reaching the "two year" mark in February. I know I am one of the lucky ones, and should not complain, because I generally have been doing quite well. But after reading some of your posts, I am left disheartened. The reason being, that when some of you have POTS spells, you can "work through it". I, on the other hand, am completely incapacitated.

Can I ask, how many of you have spells while laying down? Dr. Low once told me he wasn't sure what caused that, as POTS is when you stand up. Needless to say, that too was disheartening.

I am needing your support, as this last spell has really done a number on me psychologically. I was thinking I was done with this, (I went into a recovery period of 5 years symptom free before) but it looks like this time I will not be so lucky.

Anyway, sorry to cry my eyes out to you, but my fiance doesn't understand, nor my family. Only you lucky, chosen few :) !

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Hi,

I am so sorry that your fiance and family doesn't understand. You really need a support system. It sounds like to me that you were under the impression that your POTS was gone forever and since you felt that way the attack made you angry. Just my thought here. As far as the lying down thing. With me, it doesn't matter what position I am in. Hopefully when you get back on your feet that you can go another 5 years or longer without another episode or maybe even forever. Best of wishes.

Paige

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avais

So sorry you have had a relapse attack. I think it is very very normal to feel incapacitated, as you describe, during one of these "attacks". As far as working through it, all that has helped me is 1) understanding at some level what is going on physiologically and knowing that it is not life-threatening/dangerous; 2) learning some relaxation/breathing techniques and trying to use them.

I have had onset of symptoms when lying down, especially after having been in bed, even asleep for awhile. I have always suspected it has to do with the blood pooling that occurs when you are lying down and not moving around much. I still get symptoms like sudden severe tachycardia and chest pain at night, from time to time.

As far as developing another bout of POTS, it might be helpful to try to identify any trigger that might have brought this on. Sometimes there is an underlying factor that brings POTS back on--illness, injury, allergy, stress, etc. If you can identify that and eliminate it, it might help. Sometimes though, there is no identifiable trigger (or much you can do about it.)

Are you on any meds for POTS? Can you increase your salt and fluids intake for awhile and see if it helps?

Hope you start feeling better soon!

Katherine

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Hi,

I'm sorry to hear that you had such a bad episode!! :P

I used to experience episodes of paralysis. It usually happened at night. The only part of my body that I could move was my eyes, and I could produce a nearly inaudible whisper. Since it happened at night, I usually ended up falling asleep and by morning it was over. But, my point is (long point, hey?!) that it happened while lying down.

I hope you're feeling better now. I'm thinking of you! :)

Kristin

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Guest tearose

Hi avais, Happy New Year to you too!

I just noticed your post, I'm about to leave for an ENT appointment (ear, nose doc) but surely wanted to give you my support!

I am sorry for this setback. It does not have to mean you won't move forward again. You may be incapacitated now, but as you have seen, many of us finally get off the bed, leave the walker behind and resume some better level of activity again!

I think one of the most frustrating things about this disorder is the way you can be going along, just minding your own business, not doing anything that seems too stressful and BOOM!, the body just flips out!

Please do complain, cry and get upset and then when you can, do something soothing for yourself. I hope you will forgive me for being brief, I'll check up on you later...we DO understand! tearose

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How stressful were your holidays? Did you change your diet at all? It's interesting, the timing of the episode... Not uncommon, after a period of even "nice" stress.

I had a dilly of an episode 6 months ago, where most of my symptoms were prevalent when I laid down. While reclining can "even out" the distribution of blood volume in the body, and alleviate symptoms in that situation, if your blood volume is already too low it can also bring on some scary stuff. Katherine asked the best question, about increasing salt and fluids - it's easy to neglect our condition over the holidays. Could that be what happened here?

I know the fear and frustration after a period of relative good health. I'm really sorry. Let us know how you're doing?

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:P

Thank you all so much for your very kind words. I can't tell you how much they have meant to me. I am so grateful to have all of you to talk to.

Here is some good news: I followed your advice, and I am feeling much better. I loaded up on salt and fluid, had a good cry, and pulled myself out of bed. I seem to be more stable now, thank heaven. I guess I was thinking that maybe this was "all over" (like you said), and I thought I would go into a "remission" if you will, like I did before. But, I am 10 years older now than the first hit, and I have to remember to take it slow.

I am one of the lucky ones, in that all I take is 5 mg of Lexapro. Otherwise, I haven't really needed anything drug wise. The part that is the hardest for me is that I have that weird GI thing, where my motility decides to take a hike and sit there. I am considering trying some Zelnorm for that. Have any of you with GI issues tried that?

At any rate, thank you again so very much. The best to all of you!

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I'm really glad to hear your feeling a little better. I just have to reinforce what the others said about the lying down part. Some of my worst symptoms happen to me in the middle of the night while lying down. Sometimes just rolling over from one side to my back causes tachycardia, dizziness, sweating, which leads to panic and more tachycardia, etc.

My neruo, Dr. Cheshire, at Mayo in Jacksonville said he consulted with Dr. Low regarding my case and said they feel that I didn't have POTs because I often experience symptoms while lying down. I think their "conclusion" is a load of bull, because I have other doctors who say otherwise. :P Anyways, I don't think Dr. Low realizes all of the people with POTS out there that experience symptoms in various positions and that it doesn't just happen while standing.

Definitely keep the salt and fluids going. I don't take any meds, but recently started taking a small dose of Klonopin at night and that helps keep the panic at bay if I wake up with tachycardia or dizziness. It also helps me sleep better and lessens the severity of the episodes.

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Hi;

I have POTS and I have equally as much trouble while lying down as I do when I am sitting or standing... I wake up from sleep very often having POTS symptoms....often even fainting while lying down....for years my docs didn't believe I could actually faint while lying down. Finally it happened while I was hospitalized. Now my doc is Dr. Grubb and he wasn't at all surprised to hear this. I have another strange phenomenon happen while lying down....documented in the hospital as well....my heart actually stops for a period of time if I lie completely flat. I ALWAYS have at least two pillows under my head....if I don't I can be assurred of passing out. Not a fun experience.

Dysautonomia never fits into a nerat little box. It is unpredictible and changeable.

Good luck!

Kristen

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