anyone here have POTS or dysautonomia??

[nelgkel]

Just wondering if any of my fellow BYCer's have Postural Orthostatic Tachycardia Syndrome or autonomic issues.

 

[booker81]

Yup - POTS and POH. Both related to Ehlers Danlos Syndrome. Hate it.

It is a neat trick though if you have someone with one of those Droid apps that can track heartrate via the camera. Resting rate for me is about 55-60, however by standing and sitting a few times, I can get my rate to over 150. I've gone over 200 a few times.

I don't take medication, but increased sodium intakes keeps my blood pressure closer to normal. Without the salt, my blood pressure likes to drop too much when standing (like 60/40) and then the POTS goes nuts and I hit that 200 mark.

 

[KristyHall]

my sister has it. she actually went into congestive heart failure at 33 but has survived. its nott o be trifled with

 

[booker81]

Nope, not at all. It's definately something to keep a close eye on.

I also have a lot of arrhythmia problems, so I get to wear a Holter monitor about once a year to follow up for any hidden changes. I have a pretty messed up ticker, but my doctor keeps a close eye on it, and we have a lot of "history" of scans, echos, EKGs and whatnot. At this point they just tell me it will keep on going right - it's strong, but it just doesn't beat normally.

 

[sunny & the 5 egg layers]

I have been dizzy off and on for 2 1/2 years but it was never really held me back from my daily routine. I would get dizzy and just have to take a break for a while from whatever I was doing. Sometimes I would be dizzy for a day or so but then I would be back to normal again.

Recently however, I have been dizzy 24/7 for 10 months straight. It started in september when I went back to school. I remember it being really hot (the school doesnt have any AC). Well I started getting really dizzy and I would go to the school nurse and end up being sent home. I ended up being so dizzy to the point that I couldnt function, I couldnt even go to school anymore. I ended up getting a tutor so that I wouldnt fall behind in school. I had been to my regular doctor and the doctor didnt know why I was so dizzy. I have gone to a neuroligist, cardioligists, ENT specialist, Geneticist, Optimoligist, Orthopedic specialist. My mom had been researching my symptoms and came across something called POTS (Postural Orthostatic Tachycardia Syndrome). My symptoms fit it to a Tee.

The problem is, most of the doctors I have gone to hasn't heard of POTS before or don't know enough about it. It is just so hard to find a doctor.

I have been drinking LOTS of gatorade and increasing my salt intake.

Some things that sometimes help me are a baked potatoe, elavating my legs and putting ice on them. It may sound weird, but when I feel like fainting, I will often times sit in my recliner, elavate my legs and eat a baked potatoe with salt and drink orange juice.

My Symptoms include:
Dizzy 24/7- Feels like I am in a dream and sometimes it feels like I'm going to faint.
Heart/Chest Pain- Sometimes for a few days straight I often think its a heart attack.
Heart Skipping Beats
Shortness of breath
Pale colored face
Sweaty hands
Heart beating too fast
Weakness of legs
Heart burn

I also have micro valve prolaspe and scoliosis. I have asked my doctor about a holter monitor before, but he didn't think it was needed.

It has been very hard having this condition. I am away from my friends and have lost touch with a lot of them. I still haven't found a good doctor that knows about POTS. But I have found that even on my worst days, my animals (whether its my dogs or my chickens) seem to make me smile with there little antics no matter how bad I may feel.

I am so happy I have found this thread. I like knowing that there are more people with this condition and that I am not alone. I love BYC!

 

[Qi Chicken]

Wow, Sunny with those symptoms I am horrified that you can't find a good doctor. Can you go to a cardiologist?? that could get you on the right track? Having to deal with the problem is one thing, having to deal with inept doctors is another. I really hope you can get this sorted out. I will be thinking of you.
THe mitral valve prolapse should be enough to get you in the door. And certainly a holter monitor is easy enough, seems like even an ignorant gp would do that at the very least.

 

[Marney]

Dear all, my daughter has PoTS, my boyf has just started complaining of similar symptoms. By five chickens live indoors and I'm now wondering if they are the cause. Any thoughts please?

 

[KristyHall]

I have now been diagnosed Dysautonomia too. It is a nuisance but with proper meds I am functional.