Experiencing POTS

[DSM3KIDZ]

I was dx with autonomic dysfunction (neuropathy), Gastroparesis and POTS. Well I have alot of migrianes and chronic nausea. I never really felt the orthostatic problems..........until now. When I stand up and am on my feet my symptoms increase alot. I first experienced this on Mon. when I was baking x-mas cookies with the kids. That evening when I was fixing my hair. Now everytime I'm not just relaxing I feel really sick (nausea -not unusual) my heart rate is fast, head is pounding and I need to sit down again.

I don't know if this is due to deconditioning because I've been homebound/relaxing for the past 2-1/2 mo. or if it means the worse that my illness is progressing which scares the heck out of me.

I moved some couch cushions 5 stairs yesterday and my hr was 106. My husband moved a COUCH and his was 74.

Should I see a cardiologist for this?

I hope it's a temporary thing.

Dayna

[MomtoGiuliana]

Dayna

Are you under a doctor's care currently for your condition? If so, can you talk to that doctor about these new symptoms? Otherwise, you might consider trying to find a specialist who can help you. I would suggest an electrophysiologist, as they usually have some knowledge of autonomic dysfunction and its treatments. This is a kind of cardiologist, btw.

Are you using any medications? It may be that you will need to try some meds or a new med, but this is only a determination a doctor can make.

Try not to stress about it, or worry about things getting worse. For many of us, POTS waxes and wanes, and new symptoms emerge only to eventually disappear either on their own or with treatment.

BTW, a hr of 106, while alarming if you are not accustomed to it, is not dangerous or anything to be worried about, per se. For one thing, women have higher heart rates than men, so don't compare yours to your husband's. A heartrate over 100 is considered tachycardia--at rest--but you were active (at least a bit) when you found your heart rate to be 106.

Many people with POTS have soaring heart rates on standing and on mild exertion. Mine can still go to 120+ just standing, some days. I would also suggest that you start a diary of your symptoms and heart rate, as that will help when you see a doctor. But, please try not to obsess about it. I only say that b/c I tended to do that and I know how easy it is to fall into that, and it is not really helpful!

As far as becoming deconditioned--that can be detrimental for POTS patients. It is important to try to exercise a bit each day--even if you have to do that in a reclining position--and start off slowly!

Keep up with fluid intake and rest. That can help.

Hope you can find a physician who can help.

Katherine

[DSM3KIDZ]

Katherine.....thanks for your post.

I'm not on any meds except for Reglan and phenergan as needed. I will talk with my neuro on the 15th and track my rates till then.

Since I've been sick 17mo. I've learned not to get too worked up about new symptoms because they can come and go. But you can't help but having that nagging feeling in the back of your mind wondering wether it's getting worse or not.

Thanks for telling me about women's heart rates are higher. I never knew that and was always comparing mine to my husbands. Do you know if that's the same for bp?

Dayna

[mom4cem]

My heartrate always varies. If it is in the 70's-80's sitting(that is a good day) standing it goes to 90-100's and forget about moving around. I think our bodies go through changes and these symptoms just pop out where and when they want. Some days just sitting my resting rate is in the 90-100's and standing it really goes up to 120's so you know what walking or moving something around does to it.

Not quite sure what a normal moving around hr would be but if you continue to feel lousy call the dr and just check.

All in all I ditto Katherines remarks.

[gwen]

if you could see your favorite doc, what would it hurt?The diary thing is just a good thing to start. sometimes i forget exactly which day something happens or specifics.so the diary does help some. hope you start feeling better!:-)

[Poohbear]

Sounds like you are having a flare of symptoms. If your activity has lessened overall the past 2 1/2 months that could be the culprit. Try to slowly build up to standing for longer periods each day and walking a bit more (as tolerated) and you may find that over time this helps again. It may also help to drink at least 16 oz. of water 1/2 hr prior to standing or walking to give your body the extra boost.

Please do mention this to your Dr though since it's a new thing for you.

I do hope you feel better soon!