What Is An "episode" ?

[turtlefairy5]

I hear people on here talk about having an episode, and I've always wondered if I've ever experienced one, or atleast experienced the same thing that you all are talking about. I just had what *I* would call an episode, and it would help me if ya'll could chime in and give me a "Yes, that's it!" or a "No, we're talking about something different."

When I have an episode, it feels like:

- extreme, unusual fatigue

- anxiety

- scary palpitations

- a general sense of feeling sick, ill, malaise, but not with any specific thing such as sore throat or headache

- I've got to lay down right now

- I can't even speak because talking, even one word, seems to make my heart race and my anxiety worse

- sound, light, noise are too much, make me feel jittery/anxious, make my heart race;

I need soft lamp light and soothing white noise

- feel depressed

- wonder if the episode is ever going to end

- scared that I'm going to have to go to the hospital again because of the tachycardia

- usually happens if I eat too much, have a full belly, or have had too much sugar, or if I'm exposed to too loud music or

stimulation, especially thumping bass like when riding in a car

- comes on suddenly and usually goes away within 20 minutes to a couple hours later

So help me out guys; this is what happens to me - am I describing a POTS episode? or something else?

I've considered reactive hypoglycemia and "simple" anxiety, but would love to know if I'm on the same page about what others are talking about when they say they've had an episode.

Thanks,

Amber

[Ernie]

Hi,

When I say I have an episode it means I faint. What you describe is part of how I feet all the time.

[turtlefairy5]

I guess I should clarify that I feel all of those symptoms to a lesser degree all the time as well, but during what I'm calling an episode, they are all very intense to the point that I couldn't, say, type a post or a response on a forum. It is very much a world-stops-turning event.

[Radha]

yes i would call that an episode, i have all the same symptoms plus some more and most of them all the time but when an episode is triggered by food or noise like you, then they are all much much more intense and unbearable, sorry you have to go thru all of it,

Radha

[carinara]

I also have experience most of the symptoms you do almost all the time. But when I get an episode, the symptoms are much much more intensive than usual. They get so bad that i was bedridden in the past for a while because my body went crazy as soon as I tried to stand up. During such an episode Iam totally helpless, at times i cant even go to the toilet on my own. My body seems to react extremly to every little thing like food, smells, noises, lights, talking and so on. I had 3 bad episodes like that in the last 10 years. Last year i was off work for 5 months due to a bad episode, And 4 years ago i was off work for 4 month. During my episode last year i finally got diagnosed after years and years of suffering. In between them episodes my body seems to get somewhat in balance again. Like i said, the symptoms are still there on a daily bases but much milder than during an episode. Thank god, that i now know that i am suffering from POTS and that i have found this wonderfull website because now i feel, that if ever such a bad episode happenes again, i know so much more about the triggers and what happenes with me. I hope this knowledge will help me get through an episode like i had in the past better ( Hopefully something like that never happenes again:-). I hope and wonder, that it might never gets as bad as that again because i now know what iam dealing with.

Of course i have little episodes as well, but they last only a few hours or a day or so.

Iam glad you asked this question because i wondered about the same question myself.

All the best for you

carinara

[pat57]

I think I use the word "event". It means the occurrence of neurocardiogenic syncope (since that is my DX). It is a collapse-faint or sometimes seizure.

[Guest tearose]

With a couple of differences, Yes, that is what I would refer to as an episode. The difficult part is not knowing how long it will take to be back to your baseline so you may find you are now being cautious. Others who do not understand may think you are being anxious but we call it management with good reason! You will learn when to push and when to rest. TRUST your instincts.

Just in case you don't know, if your heart has taken off and you are having trouble slowing it down, sit down and curl up as in a ball, bringing our knees to your chin. It will break the fast rhythm. This is a good time to take in extra electrolytes because your little ticker has been in overdrive. Also, you may find that after you are feeling better you then feel a "crash" of total no stamina, this is like exercise fatigue. The heart has run a marathon and now hours later the body starts to feel the effects of all that activity. I call that fried nerves. This is the time to rest and replenish your energy.

Since we tend to limit our activities during this healing/ return to balance period, we call it being in a "potshole".

If it helps, being in the posthole does not have to be depressing! Some non pots people may think it is like depression but it is not. We have the desire and motivation to get up and go and do things, but the body is struggling. Do not add emotional stuff to the physical issues and you will survive your time in a relapse. Keep your mind active, make small daily goal (s) and take small steps.

best regards,

tearose

[Csmith3]

Yes, that all sounds familiar to me. And I agree with the depression. I know it's not real depression in terms of medical diagnosis because as soon as I feel "normal" again (ie, hours later), the feeling of depression has totally gone.

Like the others, I would make a notional distinction between an episode (as you have described) and a crash (when the symptoms are worse and constant for weeks or months at a time).

[lorrie]

My episodes come on quickly and take anywhere from several hours to 2 days to be back to normal. My episodes include:

-flushed feeling in my face

-arms and hands go numb

-excessive sweating

-pounding chest

-nausea

-stomach pain

-severe headache

-confusion

-inability to talk

-uncontrollable shaking

-bp drops drastically

-hr rises

-trouble swallowing

In between episodes, I have fluttering or pounding in my chest several times a day. I am also prone to migraines and extreme fatigue. I have a constant feeling of being hot no matter what the temperature.

What you are doing sounds like a POTS episode to me. Just remember that everyone may have slightly different symptoms and may react to an episode differently. I have the added problem of loss of bowel control and I haven't heard many others have that happen. My POTS doctor explained to me that your body reacts in whatever way it needs to in order to protect itself.

[juliegee]

Lolo,

Do you have any allergy issues? Hives or any skin involvement aside from the flushing. When I feel like you do, I use my epi-pen and everything resolves. I have long suspected a greater connection between autonomic issues and mast cell disorders. I learned of mast cell activation disorder on this site and am in the midst of an evaluation I had done at Brigham and Young in Boston by Dr. Marianna Castells (one of few masto specialists in the world) to get her input. She took tons of blood and did a 24 hour urine. I'll let you know what I figure out... Since I've been treated for MCAD, my autonomic things are improved, too. Before I took daily antihistamines, I was having trouble eating, couldn't even ride in a car, etc. Just a thought. Maybe ask your doc, if you could try benadryl when you have an "episode." It often prevents things from worsening for me.

Julie

[jbrian00]

My episodes come on quickly and take anywhere from several hours to 2 days to be back to normal. My episodes include:

-flushed feeling in my face

-arms and hands go numb

-excessive sweating

-pounding chest

-nausea

-stomach pain

-severe headache

-confusion

-inability to talk

-uncontrollable shaking

-bp drops drastically

-hr rises

-trouble swallowing

In between episodes, I have fluttering or pounding in my chest several times a day. I am also prone to migraines and extreme fatigue. I have a constant feeling of being hot no matter what the temperature.

What you are doing sounds like a POTS episode to me. Just remember that everyone may have slightly different symptoms and may react to an episode differently. I have the added problem of loss of bowel control and I haven't heard many others have that happen. My POTS doctor explained to me that your body reacts in whatever way it needs to in order to protect itself.

You hit most of my symptoms right on the button, except my bp rises and I don't normally get nauseated. I noticed these almost daily when off of cymbalta. It has so helped with most of the symptoms, except these wierd headaches I've been having.