Think I Just Had My First 'episode' Since Diagnosis...

[bizbiz]

I was feeling really weak and tired all day, but went out to feed my horses. I was doing okay, cleaning the paddock and preparing their feeds, until I started to oil their hoofs...I was going from squating down to standing at each leg and started feeling really breathless and slightly dizzy and my heart was just pounding! ( I should have known squating to standing continuously was a big no-no for a POTSY!!) So checked my HR monitor and it was reading 140 bpm, so I finished up and got into the car to leave. Usually sitting brings it down, but this time as I was driving home it just kept going up and up and up...when it reached 180 I called my husband (who thought I was just having an anxiety attack and told me to come home), but it just felt really bad, so I made the decision to drive myself to the ER (5 mins away).

When I got there I got out of the car and crouched down with my knees to my chest hoping that I can just make it go away, but it didnt help, and I started getting the shakes. So I went inside and they hooked me up to the ECG (which was all normal, just fast HR - 130, blood pressure normal) and gave me an IV fluid bag. By this stage I was so cold, couldnt stop my body from shaking and teeth from chattering.

Anyway, eventually my HR slowly started going down, until it got to about 80 and I tried standing. It went back up to 100 when I stood, but thats pretty normal for me, so they said I could go. I was still a bit shaky for half an hour or so when I got home, but ok after that.

Does this happen to you guys often? And do I just take a BB and ride it out at home next time? I tried the crouching with knees to chest because I think I read here somewhere that it helps? I havent felt this way since I first got POTS 6 months ago! It was really scary!!!

[rymac]

I can usually tell when an episode is coming on. I take 1/2 of a 25mg Toprol XL. When I do this it almost never gets to a full blown tachycardia episode. It helps if I can sit down and drink some water.

[Guest tearose]

Keep packets of electrolytes with you. Next time, cause there will be a next time and you don't want to go to the ER... Mix water with electrolytes and sip it down. You must not have pulled your legs up tight enough to your chin. This will break a fast rate if done firmly. How long did you stay in that position? It can take 1-1 1/2 minutes to break an SVT. I find laying flat will also break an SVT. (I don't recommend this but if totally out of control, ask your doctor if you are allowed to apply pressure to your neck if you must break an SVT.) If your fast rates are frequent and you are unable to manage them, you may have an accessory pathway and not just SVT from POTS. Keep in touch with the doctor and try to stay out of the ER. The ER staff usually will interpret our symptoms as a more serious-must-treat-it-now issue and we know that for most of us it will eventually pass. Also, after an event like this, you will probably feel like you ran a marathon and be wiped out and very weak. Rest or you will further relapse.

Are you using compression? Even in compression, if I must be active around for any length of time I will bring a seat cane or just find a place to sit and let my body rest before being active again.

The one thing that concerned me the most about your incident is that sitting, your rate was 180. That is dangerous. I do not drive if my heartrate is over 100 sitting down. It may climb to 125 while driving but I make sure my range is never over that. You must have been dehydrated or you may have that extra pathway. Please follow up with your pcp or cardiologist if this is a new pattern for you.

take care,

tearose

[all4family]

I don't have any advice, I just wanted to say I am so sorry that this happened to you. And even more so that your husband thought it was anxiety. I know that decision to go to the ER is such a hard one. Especially when feeling so bad. I can't tell you how many times I have sat in the parking lot at the hospital waiting to feel better and trying to decide if I should go in. I hope you are feeling better now. Take care, and take it easy on yourself.

Healing hugs

Suzy

[turtlefairy5]

I've had a couple ER episodes myself - the first one was especially not fun. They did everything from a chest x-ray to a cat scan, took all kinds of blood. yech.

Second time, different ER, I drove myself to the ER at 6:30am with that racing heart feeling that freaks me out so bad. The doc thought I was having an anxiety attack, but this awesome man did a wonderful/miraculous thing:

He gave me a dose of beta blocker in my IV, gave me a prescription for low does beta blocker, and referred me to a cardiologist. He took me seriously, ordered follow-up instead of simply dismissing me, and sent me on the long journey to a POTS diagnosis, with help from others along the way.

I will remain ever grateful to that ER physician.

But of course ER's are no fun. Sometimes it can take hours for someone to see you, sometimes, like someone else said, they go all crazy and start doing all kinds of tests that make you nervous and anxious and feel even worse. Or they completely dismiss you.

I understand why you don't want to end up there again - follow everybody's advice here. Sit and scrunch up, lay down, drink some water. The ER print-out I got also suggested - and I know this sounds wierd, and I don't know if it works - to bear down as if you are having a bowel movement.

If your heart rate while sitting doesn't go down, please go ahead on to the ER. Take care of yourself, no matter what husband or other say!

Amber

[bizbiz]

Thanks guys! I feel like I get more advice here than from a doctor.

Tearose, what is an accessory pathway? I tried to google it but couldnt find much info. Also, I tried the crouching with legs to chin only for a little bit - wouldnt have even been a minute - because I was in the car park and felt like everyone was looking at me like I was an idiot!

I also didnt take my BB that morning because I was slowly trying to come off it and taking less and less everyday. I guess that had something to do with it?

I also dont know if it was the squating to standing that brought it on...? Initially I stopped, sat down and had a drink, and the HR went down to about 90, so I thought it was okay and went back to oiling their hoofs, and then it went back up and stayed there and I started freaking out...I guess because I had the HR monitor on and I could see how high it was going made it even worse...I dont know if it would have gotten that high if I couldnt see - I got very anxious!!!

My POTS came right after the birth of my son, but I remember two occasions while I was pregnant and didnt have POTS at this stage (or didnt know it), standing in the kitchen cooking and my heart started racing so badly I had to lie down. I didnt have a monitor back then but I'm sure it would have got to about 120 or 130. After lying down for about half an hour it went away on its own.

[bizbiz]

Just one more thing....

Is there a reason this happens? I mean, was it because I was tired, or the continous squating to standing, or because I didnt take my BB that morning? Or would it have happened just the same if I was just sitting on the couch watching tv? I have a six month old son and am not getting much sleep lately...could this be a reason?

[flop]

the "why" question is always one that we want answers for. I guess that there is no definite answer but a few factors combined together can increase your chance of having a fast tachycardia episode. Squatting and standing up is often a trigger, being tired can make things worse, physical exertion can be a trigger, had you had plenty to drink? Would being on a BB have prevented it - impossible to know.

Sorry I haven't really explained that at all, what I am trying to say is that it was probably the combination. It can happen whilst lying on the sofa but is much less likely (I am not saying stop doing things, but maybe take a rest between jobs or get someone else to do the hoof oiling).

Riding is excellent for leg muscle strength which helps to pump blood back to the heart from the legs so it is a good thing to keep doing.

Flop

[Guest tearose]

In non-medical person language...

The super high heart rates are the result of several different causes.

You may be having a normal response to an abnormal condition.

OR

You may be having an abnormal response to a normal condition.

An "extra" or "accessory" pathway means that in a heart that is having super high rates it has been discovered that the electrical system has an extra electrical loop that causes the very high heart rate.

Hope that is a little clearer.

take care,

tearose

[Lizzegrl]

Biz biz, as a frequent episoder, I have a few pieces of advice. I don't drive if my rate gets over 120, because after that happens, I often get another surge or drop in rate that can cause loss of consciousness. I don't want that to ever happen driving. Just a thought. Not a fun one, but one that should be considered.

I've never had luck with the val salvo move, but laying down with my head and legs level for a good half an hour tends to get things headed in the right direction when I'm svt'ing. If it doesn't after that, or keeps increasing, I call for help or at least company to wait out the episode.

If you keep up the episodes you might want to talk to your EP about looking for the extra pathways. My doc said that ablation isn't all that successful with POTS pathways in the long run, but it worked for about 5 years for me, before I was diagnosed with primary POTS so it might be a good thing to address. It is an awful feeling to have the heart out of control, so just make sure that when it happens you put yourself into a safe situation as soon as possible. Don't stay at the barn alone, or go driving somewhere too distant that if something happened you couldn't be found.

Triggers - I have found that lifting things over 20 lbs or so can trigger an episode, as can frequent stooping and lifting smaller amounts. Also, not getting fluids and rest can do it to me. Sweating is a big no no in me. When I get too hot and start to sweat too much, I lose fluids and the rate increases too quickly so I have to avoid overheating. Trying to keep yourself well hydrated and not too warm may help with episodes. Track the things that youare doing when your heart takes off, so that in the future you might be able to find your triggers. It could help prevent them in the future!

Good Luck

Liz

[bizbiz]

Okay, so this 'episode' happened to me yesterday, and just now I had another one!

Must admist I was fighting with my husband and crying and getting myself all upset, and before I knew it I felt my heart thumping, checked my mornitor and my HR was 110 and creeping up. It got to about 130, so I layed down flat on my bed, took 6mg of my BB and waited. Withing a few minutes it was down to the 90's. I tried the crouching (HR went back up when I got off the bed) and pulled my knees up tight under my chin, but it didnt work, so I jumped back up on the bed, drank my electrolite drink and waited. It took about half an hour all up, but then I was able to be up and walking as if it didnt even happen.

I hope I'm not crashing...

[janiedelite]

Hi bizbiz,

For sure fighting with my husband will set off my symptoms . It was a good thing that you went to lay down, rest and took the beta blocker. It seems like most any stress (physical or emotional) will make me pool more, get more tachy, etc. Sounds like you have quite a bit of stress going on right now too, though! So sorry for the lack of support from your husband. It's good that you're recognizing the beginnings of an "episode" before they get out of control.

[Sophia3]

Hi I had horses DECADES ago but bending over to pick their hoofs, i would hold hoof in my leg between knees bent over like a blacksmith (my horses were sweet and kind!)

for oiling hooves I can't remember if I bent over from waist or not. Is this what YOU are doing? Or squatting? BENT OVER positional situations ALONE set me off, scrubbing bath tub (RARELY do that anymore, if you need to a lot, get a cheap mop from dollar store to clean tub for you so you can stand)

Bending over to scoop cat litter boxes can do it and if I rush from that to answer a phone, I am always breathless on the phone. so it triggers symptoms and SOB (Shortness of breath)

It would be nice to train horses to raise their feet to put hoof on two foot block and you could brush hooves this way. Course might be a trick with back feet.

I had an Arabian in the 70's..and a few months after owning, discovered by accident- picking out front left hoof, he had been taught to kneel down. It was cute but annoying...go to pick up feet to use a hoof pick, and I must have bumped his shoulder a certain way and it sent off old signal in his brain. Students at this riding school and parents found it very entertaining. But I digress.

Try wearing an abdominal support from exercise section at store, wide velcro things...see it that helps. Good luck.