Help Me Explain This To My Family And Friends Please

[erikainorlando]

I have been busy with a lot of sitting work so I have been better symptomatically (aside form all the diahrea!! ). But this morning I got up and didn't fee too bad even tho my hr was it's usual 138. So I started doing things around here....swept the porch a little..then i got one of my very sick spells.

What is this? I mean I will even take the diahrea, the chest pain, palpitations etc. BUT it is from activity that I get these sick spells. Can't even explain it to anyone (other than you all) but my head feels like it is going to pop off, and i feel sooo sick...not nausiated...just weak, shakey, horrible sensation..that I never had in my life before POTS so I don't even know how to name it. A woman once said that it is the extra levels of epinehrine or norepinephrine or something life that...

But I know you all have something like this... it is from activity... and if I lay down for a while...sometimes a long while...it will get better and leave. BUT hwat is this and does anyone else get these "sick" spellls?

Thanks so much...

Erika

[babettess]

I'm so sorry you are having these spells. Activity does it to me, too! Not all the time, but sometimes and without any warning. I'm not sure what actually causes this to happen.

I once read that a "healthy" person would feel like a POTSy if they :

Didn't eat or drink for 24 hours and then

Ran a marathon

In 100 degree weather

And I think there was something else, but I can't remember it.

Another way I've explained it is it's like having the flu every day (without the fever) and running a marathon.

Hang in there and I hope you feel better. Try to stay hydrated since you're probably losing a lot of fluid.

Babette

[bjt22]

Yup. Have at least a couple of those spells a day. My whole life revolves around trying to function in some way around them. Some success with that...I'm very good at planning now. And I have to plan EVERYTHING. Tomorrow, for example, my husband and I will probably have an appointment at the bank. Totally necessary. So, today I'm doing nothing. I won't even cook dinner, most likely. I'll take a shower tonight, and with luck, I will feel decent enough to get myself dressed and presentable sometime around noon tomorrow. Wanted to go to my son's house today to see the grandbaby, but if I had done that, well, I'd need tomorrow to sort of get recovered.

How to explain? My favorite phrase is "feeling like something the cat drug in". I guess I'm at a point where I accept that feeling, so it's just part of my existence. I'm either working towards feeling that way, feeling that way, or recovering from feeling that way. All the time.

[kayjay]

I would say that I feel as though I had the flu, with panic attacks that last for hours and when the fear is over my whole body hurts as though I was run through the washing machine then tumbled dry (with rocks in the load!). HAHA

[janiedelite]

Yes, that is how I feel too under stress, heat, activity, and especially talking. I believe it is because something is putting more strain on our brain cells than they can handle in their oxygen-deprived state. My BP goes up too. The only thing that helps is resting flat and quietly. Fun, huh!

I try to explain it by saying that when the brain doesn't get enough blood flow, it will automatically do everything in its power to help itself including pumping out extra adrenaline. I tell people that I feel like I've just worked a 24-hour shift (I used to be a nurse) and I drank 6 cups of coffee. "Wired tired" I've heard people describe it.

[futurehope]

I have a similar explanation as Thankful. When I feel shaky, weird, as if I can't take another step or do anything, I attribute it to my brain not getting enough oxygen to function properly. I'll frequently say "my brain is not working". If I am feeling that way, I may "mean to pick up a pen", but I "pick up a knife". I absolutely cannot drive a car in that handicapped state. I would do something wrong. I may say the wrong words when trying to communicate.

When I say,"my brain isn't working", it means "don't expect me to do anything useful. I need to rest."

[dsdmom]

I think the additional thing was

GIVE A PINT OF BLOOD

since many of us are hypovolemic.

[erikainorlando]

I was trying to explain to my boyfriend today that although the diahera is bad and stomach cramps are bad and the heart palpitations are no fun but the sick spells can stop you dead in your tracks!

Again...it is after activity...makes me stop...can't funciton. Not even for one minute more...

So do you think it is the neurotransmitter thing (too much) or too little blood to the brain or just too little blood? I have noticed in addition to laying down, if I drink A LOT it helps. So maybe that is support of the low blood volume things...

Thanks guys!!

Erika

[ajw4790]

Hiya,

I think the symptoms that your are describing are caused by orthostatic intolerance. I get this all the time too. It can be caused or brought on by many things, and there are many things that can help decrease the episodes or their severity, but not really anything to stop them. Because, it is more of a blood volume/pooling/dispersal issue, you can try to do things to decrease the pooling and help encourage more blood flow to the brain.

As far as how to describe, I think you got a lot of good ideas! I have yet to find the magic phrase. I think that this may be a case for many people of "seeing is believing". Meaning I think that most have no clue until they see you turn grey, weak, and almost pass out. Also, if done right I think that reminding or telling people when they have a cold/flu etc. that how run down etc. that they currently feel is how you feel on a daily basis. This may not work for some, and they may soon forget, but at least it is a more tangible metaphor for them to try to grasp.