What Do You Do During An Episode..

[mom4cem]

Hi all,

After a long run of feeling not too bad, the bad came rolling on in. Since Friday I have a had a few episodes of adrenaline surges, tachycardia, the teeth chatters hit, running to the bathroom, etc. Outside of taking a bit more of beta blocker(I take 6.25mg 1x a day and when I have an episode I'll take another),,but taking just another bit when I have an episode leaves me so blah, tired, out of sorts,,just can't function, mental fatigue and muscular fatigue. Weather is no help either.

The tachycardia is tough and long to ride out without the beta so I usually break down and take it. It's been off and on for a few days so it's starting to take it's toll mentally and physically.

I'm starting to lose my rational part and I'm starting to think and worry all over the place.

Anyone have any tips or tricks or comfort things that help you get through it? (the symptoms)

BTW, anyone ever feel the surge as a heat sensation in your stomach and or(I'm afraid to even say it) the groin area and it spreads?

[Guest tearose]

I do self talk and tell myself that just because my body is taking off into uncharted territories my emotions do not have to go there. I tell myself I am not going to die from this and to lay down and wait it out. I always take my electrolytes in a sipper cup with me as I lay down!

I think managing has gotten a little easier over the years simply because I think my nerve endings got fried over the years!

More seriously, to break a SVT, I will sit down and pull my legs up to my chin and it will stop the racing in just a few more seconds. Is that your worst symptom?

Wearing compression has helped me to manage too.

tearose

[delphicdragon]

Generally during an episode I lay down in a semi-quiet room and sip on water. I found that Rescue Remedy (an herbal supplement) seems to help (sometimes). It's more alcohol than herbs and I think the alcohol (even though it's just a few drops) calms my nervous system down as it is a depressant.

I find that reading keeps me from panicking, especially if it's a crappy chick novel or a comedy book.

TMI ALERT!!! Sometimes spending "time" with the boy also helps. I think the oxytocin release short-circuits the adrenaline response. And he sure as heck doesn't complain.

Sara

[turtlefairy5]

I would agree with tearose that calming self talk can really help. I was having an episode recently on a camping trip; even sitting down, my heart rate was up around 115, so I just did my best to remind myself that this has happened before, and that I eventually felt better. I just remind myself that this is just another episode, and that I have survived every episode so far. I remind myself that this is POTS, and that it stinks, but that it's not a heart attack. I remind myself of the people on this board who cope with it, and that encourages me. I see the episode as a reminder to take better care of myself (drink more fluids, stay out of the heat, etc.)

Also, I second what Sara said about "crappy" chick books and comedy. Read something fluffy, something to entertain you and make you laugh. And that's from a former English teacher! ha! Just distract yourself from it.

I know that when I've been suffering with a real bad episode of the brain cooties, dealing with depression and/or anxiety, I have to escape into something that's fluff. That's okay.

It's even okay to totally disconnect your brain and just plug into the tv. Do whatever you have to do to get through it! We're here for you!

I hope things get better.

Amber

[MomtoGiuliana]

I know how hard it is. No matter how many times you've been through it, it is scary and uncomfortable.

I also have found rescue remedy helpful. Perhaps too b/c of the alcohol...?

Focusing on breathing also helps me. And as others have said the self-talk--I've gotten through this before I can do it again.

Increasing fluids and salt of course, helps.

I would not feel badly about using a beta blocker--if it helps--beta blockers are very safe. I also take mine if tachycardia flares up.

Take Care,

Katherine

[masumeh]

When episode-like symptoms are overwhelming, I find a quiet, dark place to lay down. If I let myself stay where noise and activity is going on, I just can't cope. The sounds get to my head very fast. So does light. When there's a lot of pain, I count or repeat things to myself, such as, "This is just one day, it will pass". Or, "All I need to do is relax. Maryam will be fine" because I tend to worry about my daughter when I'm going out of consciousness.

When it's not possible to take time out, and I'm having high adrenaline symptoms (which I will not faint right away from) I grind my teeth and push myself. I try not to speak. I avoid being touched. That way, I don't blow up on anyone. I try to keep moving if I have to be on my feet. Once I stop moving, I need to go lay down and will probably pass out.

It's kind of complicated because the symptoms vary and have so many different roots. I do something a bit different for different kinds of symptoms.

[ajw4790]

I guess try to treat the symptoms best I can, and then either crash and go to sleep or try and distract myself with other activities (tv, read, internet etc.). Sometimes I guess self reflection and trying to remind myself of the big picture and that it isn't always like this, and that you have to work through the bad to get the positive benefits etc. But, for me it is mostly distraction and trying to not focus on everything more than I have to. I also tend to set a goal for myself and then concentrate my energy on this goal. Like if I am having a day that is just hard to even sit up and stay awake, I try to make a goal of doing a particular small household chore etc. and focus on that and not that I feel crappy.

It is dependent on the environment that you are in and the symptoms to what can be done or even what maybe beneficial.

I guess the most important is listen to your body, and slow down if that is the message it is trying to tell you.

[lorrie]

I have to get very still and concentrate on breathing. A cold, wet washcloth on the back of my neck and on my forehead helps too. I have to lie down and shut my eyes. I need quiet and low light and sleep.

My husband automatically goes for drinking water, wet washcloths, fan, and starts turning off lights. He and my daughter have a routine they follow and they do it all without speaking...just know their part and go for it. In the early days of this disorder, it was total chaos and lots of stress and excitement. Now, it runs like a well oiled machine. We have all learned it will pass sooner if we stay calm and get me still and cooled off.

Thank God for these two...I love them!!

[ramakentesh]

I try to breath it out. Go and lie down or put some calm music on. Once I also had two shots of Baileys and it nibbed it in the bud - probably not ideal, but you gotta do what you've gotta do.

[EarthMother]

I'm a Zen meditator, going on ten years now. I have excellent control of my breath and my mental state ... when I'm not in a POTS flaire.

So what do I do during an episode? I crouch on my heels with my knees pulled up, breathe very slowly and CRY quietly. The amount of anger, frustration and helplessness that still grips me during an episode is unbelievable. I wish I can say that I can handle it better after all these years. But I can't. At the worst of it, I am still at my worst.

What I think HAS changed is my moment to moment coping when the flaire has passed. I am more able to let go and resume what I can do without ruminating about what has past.

This too shall pass.

I never before realized the living truth of those words.

Peace.

~EM

[mrsdavidson8605]

Hi,

I sure do know how you feel.. Those adrenaline surges are the WORST! I always feel like a monster ready to kill someone! I have learned to try to avoid interacting much with my husband during that time, bc I know i'm going to go off on him. Also, I pray and read my Bible. Sometimes, obviously, reading makes me feel worse, so I just meditate on the words I know and think about how I feel that God is with me. That helps me alot, eventhough I know I still have to go through the episode. Sometimes I wish I had a rescuer who could just take it all away. I try not to dwell on that thought though, because it's not reality and will make me feel even more disappointed. Hang in there, we're all in the same boat!!!

[juliegee]

I use my epi-pen. Crazy, I know. The first time was so scary because my HR was so fast I was about to lose consciousness. Epi is the WRONG thing to do for tachy, but the RIGHT thing to do for anaphylaxis. I took a huge chance and it worked. My husband injected my thigh and ALL symptoms stopped. I now take benadryl, zyrtec, or atarax when I feel symptoms coming on to avoid the epi-pen, but I always carry it just in case.

I am struck by how similar your "episodes" are to my anaphylaxis.

Julie

[Maxine]

One main thing to remember-----------BREATHE........ Just in and out like a baby does when they sleep. no fancy breathing, jut REMEMBER TO BREATHE--- . I would tend to hold my breath without realizing it, and this only makes things worse. Sometimes I have been able to make the spell go away more quickly by just doing this simple thing. I have been able to avoid them when I felt one coming on too--- .

I think these spells are common with POTS/dysautonomia, and also one of the most difficult to deal with.

It can make you feel "out of body", and when some of us have gone to the ER, it's easy for a doc to pin the "anxiety" diagnosis on us.

Fortunately these usually come in waves and calm down on thier own. I have found that reading a good book helps get my mind off of them, but if your having adrenaline surges it can be difficult to conentrate. There are things you can find to distract your thinking, and hopefully avoid that overwhelmed feeling. Beta blockers help keep the heart rate down, but I still get tachy on them if the spell is intense enough. However, the tachycardia is usually below 120. The klonopin has helped, and I only take half of what is prescribed which is .50. When I go on a trip, or have to travel to an appointment, then I may take the whole dose because my body tends to get overstimulated.

Before I was diagnosed with POTS, and I didn't know what was happening, I would get on my knees and crouch into a ball on the floor and ride them out. I remember those teeth chatters.

I sure would like to see an ANS doc, or a neurologist who specializes in ANS disorders to study these spells specifically, and do different testing while these spells are active.

It's like a switch would go off------one minute I was fine, and the next I was having one of these spells. AND YES, it would start with that disturbing warm feeling in my gut.

One thing I always remember, is that they don't kill me, and they always go away as mysteriously as they come.

Your in my thoughts and prayers for these spells to take a quick exit--- I know how terrible they can make you feel.

Maxine :0)

[EarthMother]

I would get on my knees and crouch into a ball on the floor and ride them out.

I've seen this from a few people (including myself). I find that crouching on my heals is the only position I can tolerate when I am in a flair. This is very different from a "panic attack" when sitting still was the last thing I was capable of.

Anyone else find this kind of compression helpful?

[ramakentesh]

I once had a real nasty one and I just dug my nails into my arms without realising! I sit down and focus on nothing - try to empty my mind. lately ive been getting these in public quite a bit, whereas in the past thankfully i was only getting them at home.

One time at a train station one just came on so dramatically and i felt like was going to die. I remembre i sat down and turned around and all these people were looking at me wondering why i was so pale and jittery. They asked me if i was alright - i said sure im fine. Im amazed how ive learned to portray myself even in these extrememly difficult circumstances as if I am fine.

[ramakentesh]

'I always feel like a monster ready to kill someone'

I usually feel like some kind of monster is after me and I cant get away I had one of these episodes in the ER years ago when i first got POTS and they were really quite interested in it. They found it interesting that i seemed to be calm depsite having what they assumed was a panic attack And the thirst thing made them think it was something peculiar. Still i didnt get diagnosed for a year from that time

[Guest tearose]

Wow, ramakentesh...

I never understood why people felt anxiety, until you explained your type of symptoms.

I never have felt that way.

You are actually that pent up? Wow. I am so sorry.

It is so different for me. I have to focus on just getting the heart rate down and then I'm okay. If I am having symptoms, I feel no emotion of fear or anger. I feel like I am running a marathon in one place and need to break the fast rate. As soon as I break the fast pattern, I may feel tired or exhausted, but that is it.

I hope you find soothing ways to stop your episodes.

Could you be having a reaction to a food or additive or drug?

Healing wishes,

tearose

[ramakentesh]

mmm... I was actually responding to someone else there. I guess the monster thing was a bit over the top. i would say more that I feel what my doctor described as 'hypervigilant' during an episode - tachycardia, sweating, jitteriness and trembling. its certainly not a psychological response to unresolved issues or 'pent up' issues.

That being said, anxiety is a pretty normal reaction to excess norepinephrine. When Im bad I generally feel anxious and jittery every time I stand for too long - for me it seems to be part and parcel with POTS. However, when im not as bad I find that my adrenal surges dont make me anxious, but yield only physical symptoms.

I think I read one study where about a 3rd of patients felt some form of fight or flight response to the excess sympathetic nervous system activity associated with POTS.

So i believe its fairly common for POTS patients to feel this way.

Its not really a 'pent up' psychological response or thing - primarily because it happens for me only after ive been

standing for a particularly long time.

I have a form of pots where I do not have a proper functioning NET transporter.

[Guest tearose]

Earth Mother, Yes! I do use manual compression too. I will bring my knees up to my chest while sitting down to break an episode. I too have crouched/squatted down on a floor when I did not have a seat cane and then compressed that way. It may look weird but it sure brings me back to baseline fast.

tearose

[Simmy]

Like tearose and EarthMother, I also find that the absolute best way to stop a tachy when I cannot lie down is to squat, balancing myself on my toes. It stops the tachy instantly and remains low as long as I stay in that position.

[delphicdragon]

Crouching down helps me SO much! What's funny is I used to do this all the time as a kid when I was standing in line. I guess my body knew what to do. Usually I get myself supine - quick, or pull my knees up to my chest. Apparently crouching down is a sign that your heart isn't getting enough blood and that's the fastest way to regulate it. Very interesting.

Sara

[mountainsunflower]

I have a question... While crouching down does work quickly to lower my heart rate... i seem to have have issues with my legs- they will hurt (well not exactly 'hurt' but i can't really think of another way to describe it- ) and it feels as though the blood has stopped and is unable to go back up to the heart (or something of the sort) since my knees are bent and it will quickly feel as though my legs are going to go to sleep or go numb- does this make since??? In the long run it seems to make things worse... So my question- do any of you who use crouching as a means to quickly lower rate, feel this too??? or am i crouching wrong???

[delphicdragon]

MountainSunflower-

My legs feel awful when I do it, and if I stand up things get 100X worse. It's a fail safe mechanism so that I don't pass out.

Sara

Don't know if you can crouch "wrong"?

[mountainsunflower]

silly me- your right, i probably can't "crouch wrong". i guess what i really meant to ask if i was understanding what everyone meant by crouch.... because for me, like you said, it seems to make things a hundred times worse - i will just sit, pretty much any where- however standing back up is exhausting!!!

[Tammy]

I have to say benedryl does help the adrenaline rushes and also tylenol. I have actually taken Tylonol PM in the middle of the day to settle down an adrenaline rush, and it works!!! Also Xanax is a God send but doctors don't like prescribing it, which if you only take it during the worst episodes infrequently it isn't addictive. Klonopin has helped alot to reset my system if it gets really out of wack and of course Atenolol everyday. However, Klonopin makes my sleep even more fragmented so I only take it for a short time when I crash so that my body resets it self.