Had An Unprovoked Weak Spell......gonna Try These Things

[mvdula]

Since I have been somewhat relapsey in the past few months, I have been trying to remember what (if anything) I was doing differently this time last year, when I had a very nice remission period...for months. It may be inconsequential, but the only things I remember are: I started taking Vitamin D - D3 1000IU I think, and I often went for walks - slowly, average speed maybe, I can't do any type of power-walking or would have a nasty episode, I'm sure. I was walking often though, in the evenings, slowly with my youngest child, or all of them...if I can get them not to run ahead too far. I did take pretty long walks though. So, we shall see if this makes any difference. It can't hurt.

Last night, just as we had sat down at a restaurant, I had a completely unprovoked weak spell. It was not hot, I had not been rushing, nor doing too much. So, I am very depressed by this, as now I am worrying my symptoms are unpredictable, and therefore I can't control them. I suddenly felt hot (it was not hot in restaurant) and very weak. It is strange though - my husband asked if I wanted to leave - I said no bc really lying down at home makes no difference for me - walking usually helps actually. Despite the weakness, I was able to sit & eat my dinner - I was hungry still, which is a bit odd since usually my appetite disappears once the weakness starts. I just kind of stare off and don't say much, maybe bc I am upset, maybe bc I don't feel up to talking. It is so obvious though, that my 11-yr old son asked if I was feeling ok. It lasted about 1 hour.

Does this type of episode sound familiar to anyone? My heart was not racing and weakness/heat were really my only symptoms.

[tinkerbella]

I get the weakness and the terrible heat surges and if I put on my bp cuff my heart rate is at about 120 and climbing... i just want to lay down again. the more i try to get up and do things the more these surges come on. I could never go for a walk though. I have to use my walker or have some to hold onto or use a crutch. I have no breath when I walk. my spells just kept getting worse no matter what I did. : ( I hope it works for you and I wish you the best...

[lieze]

I'm sorry to hear about this.

My episodes are unpredictable too. And I get real quiet and stare also.

I am noticing a lot of emotion with mine. Like I have to hold back from bursting out crying and I feel a cloud of depression coming over me.

I get nervous to go anywhere at all just because I never know when it will hit me.

I think it's great that you have such a positive attitude. Want to try to work through this, and are still willing to be so active with your family. Thumbs up. Let us know how you're doing if you can? Check in? I'm interested to see if those things help? I was doing daily vit c and it seemed to help but this past bottle I got is really nasty bitter and leaves sore places in my mouth.

The other type was chewable and only $2 at Walmart I'll have to get some next trip. I'll let you know if it works for me. (another thing to try)

Oh also if you know you are going out in the evening pace yourself during the day? Take breaks? Try to save yourself for that event?

lieze

[Guest tearose]

I have had similar out of the blue spells so to speak.

It is very frustrating but after a few days I noticed it passed. Another time after a few days, I wound up with a virus.

In my opinion and from experience, I believe these symptoms come when our sensitive body has been exposed to a virus or bacteria and is going into overdrive to kill it and keep it from getting us sick. A "normal" person would not react as seriously as we do because the energy it took to get out and to that restaurant and all that walking was already using up your energy, your body was multitasking in big ways. Also, it took energy for your body to digest your food, talk with your family...it all adds up in us.

I hope that this spell leaves just as quickly as it came and it is not the beginning of a relapse for you.

hugs,

tearose

[lieze]

I've noticed what tearose is describing too.

Sometimes when I've felt a little worse I end up with cold symptoms within a day or two.

I also realized how with my job sorry to run on this-every day I went to work I was exposing myself to loads of germs that my body was having to fight off. No wonder I was always fatigued!

lieze

[futurehope]

I agree with Tearose.

[erik]

And I get real quiet and stare also.

This describes me at times. Zoned out... perhaps even something loosely akin to the "thousand yard stare". Beyond that, I've had couple of "catatonic" episodes... one involved remarkably low Potassium levels (documented). Besides the "detached" state, some phases of "emotional lability" seem associated with POTS to me... though not every doc will buy in to that.

Somewhat different, but also in the genera of making one feel "unreliable"... I can reach a fatigue level where I get what feels like flu symptoms coming on (maybe this is more CFS side rather than POTS???). This can even include great discomfort and night-sweats and such... but lacking typical POTS heart rate things. I seem to have had great luck lately with steady moderate stream of salt, potassium, magnesium & water... then rest for a while. For me personally, this may be somewhat useful in staving off and treating these things. I do not yet have them, but I will probably try out some "slow release" versions of those key minerals and see if that is even better (or at least more convenient than popping pills every few hours).

Besides getting things measurably out of whack (electrolytes and such)... I think we folk tend to have tighter ranges of "normal". Meaning even a normal reading might be personally a bit out of range for us in some of these key items like electrolytes & sugar. I believe the glucose sensitivity is a medically (research) documented aspect of POTS/dysautonomia. The rest just "seems to be the case" to me personally.

[ramakentesh]

You know anything doesnt surprise me with POTS some of the symptoms Ive experienced are just so bizarre that Ive kept them to myself.

But I can relate to your description and the lack of predictability is quite annoying for me at the moment trying to maintain a fulltime job with varying levels of success.

[lissy]

Hi,

Its kinda weird to be reading this, the exact same thing happened to me on the same day...My Family and I went out to eat and it just hit me I stuck it out I wanted to run out of the restaurant but I have a 2 and 3 year old and they were eating a ice-cream cones it seemed like forever ... I am also going through a relapse after feeling great for a few months. The only thing thats really changed that I noticed is I'm up North the weather is changing and more stimuli surrounds me its Louder , busy, humid . Hope it doesn't last long I spent 2 summers not leaving the house much so I hope it passes.

Lissy

[issie]

Well, here's my two bits---Yes, have the same problem. I notice that sometimes it comes on when I'm hungry. I can't seem to make a decision of what to eat. Feel sick, know I need to eat. But, have an aversion to it. Can't decide what to order or even get out of the fridge. My husband thankfully takes over and I make myself eat ---something. Eventually, it passes. I think it's some type of blood sugar issue. But I get the hot flashes too. I was getting the flashes when I did my TTT. They told me that when I was having the flashes my pulse and BP was doing odd things. Don't know what, but it was indicative of POTs. I have the "spacyes" allot of the time. Just seem out of it. Talking becomes too much, too much energy, thinking etc. So, then comes the quietness and starring. Hope we figure this one out!!!!!