Severe Episode - Off Work, Need Suggestions

[jeanlit]

Some symptoms came on over a year, others always there, just got worse. Thought it was stress.

1) Severe constipation. 2) Gastroparesis (stomach won't empty well). 3) Migraine like symptoms without headache. 4) Brain fog so bad I had to take off work. 5) Exhausted to the bone upon upright. 6) Temperature - hot then cold, then hot, then cold. 7) Pupils - pinpoint, then dilated, etc. 8) Lightheaded, even when just sitting still. 9) Short of breath.

Not until I put all these together did I realize it was the POTS back in full.

Saw primary who did an EKG - normal except for low rate of 55. Pulse on exercising just does not get up there (15-20 minutes on the bike and I can get just to 100). Used to get my pulse to 130-140, not anymore.

Current treatment: Florinef, midodrine, compression stockings, exercise (bike), salt tablets. Staying away from anything that will increase norephinephrine.

To try to get some energy and brain function when upright, I'm wearing 2 pairs of 20-30 mmHg compression hose and that does help with the weak and dizzy feeling.

I must return to work 02/12/2016.

I'm thinking of increasing exercise a lot to try to put some blood up above my thorax.

I thinking of increasing the salt tablets even more to try to retain some fluids (from my appearance, I am dehydrated, from my urine concentration, I definitely am dehydrated).

Clue: Very strong coffee will get rid of the shortness of breath. Usually do only tea, not coffee.

Suggestions are greatly appreciated.

[abizzle229]

I was told to do light exercise everyday and make sure to stay well hydrated. That way you are still getting benefits of exercise, but you aren't pushing yourself into a "crash" by pushing too much! I am currently struggling with lack of energy and don't know how people do this everyday with "pushing through" the symptoms. I am also out of work as well and really want to go back but I am trying to find the strength to go back everyday.

[abizzle229]

I also heard supplements help like Vitamin B12 and Ribose, with energy!

[Katybug]

Have you had a recent full cardiac workup? My mother had very similar symptoms including not being able to elevate her HR upon exercise (hers was worse than yours). They were going to do a stress test and the cardiologist monitoring that test wouldn't even let her get on the treadmill. She put her in a wheelchair and wheeled her over to the ER. Upon further testing, it was determined she had a rt bundle branch block. Basically, a problem with the electrical conductivity in her heart. She had a pace maker put in and now she is fine.

I don't mean to scare you, but not being able to elevate your HR is not a symptom of POTS and should be evaluated immediately by a cardiologist if it hasn't been already.

[jeanlit]

Thanks for the suggestion.

At PDocs office, the EKG was normal except for bradycardia. As of now, I'm scheduled for the full blown Myoview cardiac stress test. I am hopeful it shows the rhythm problem. Going back to teen years, I've had intermittent rhythm problems that were completely asymptomatic other than annoying. Fast irregular pulse that usually self-corrects or corrects by smacking my chest a couple times (not recommended but works for me). That is not symptomatic just annoying. In years past I've had a lot of premature atrial contractions without any symptoms, just show up on EKG.

Many EKGs over the years have shown bradycardia and that is when I am really struggling to function. I wear out very very quickly just walking across the room.

These episodes usually self-resolve, but this one has really caused problems. I'm not sure I can wait it out until it self-corrects.

I was hoping somebody knew of something to get it to self-correct other than a pacer.

[corina]

HI Jeanlit, I can have episodes of brady too. They come and go for no apparent reason. When I'm really low I can't leave my bed. I have had a full work up and like you I can get my heart rate up to some degree but not like healthy people at all. As the heart in itself has got the all clear I'm dealing with the brady episodes for as long as I can. Not sure whether this is dysautonomia related but it's quite annoying! Sorry no ideas for self correcting, just a "you're not alone"

[jeanlit]

Update.

First, I looked at my old tests. When I lie down, my circulation is way too fast (as determined by tagged red cells). So all this lying down trying to get blood to my head was the WRONG thing to do because it was just circulating more blood through my kidneys, causing me to get more dehydrated.

Yesterday, I really revved up the salt (6 salt tablets along with salting food) and did 15-20 minutes on the bike (not fast just medium). I also wore the 2 pair compression hose (equals about 35 mmHg) until late night.

Feeling better today, really much better. No longer short of breath. Pulse is getting up some, but not great.

Despite the 120-130 ounces of fluids and the salt, I still appear dehydrated (my blood sugar is just fine). I will keep working on it.

At least for now, the brakes are off a little bit.

Thanks for the replies.

[Katybug]

Hope this continues to make improvements for you!