kalamazoo

I think part of the problem is were seen as too fragile, its rather bothersome. So sorry to hear about your problems Jen, your husband sounds like a great guy especially that he takes care of you, you guys will get thrugh all of this ... Its very hard. Crossing my fingers for you!

And MCAD, I kept seeing that aroundthe forum, now ill be able to research, thanks!

I'm just curiousabout your experiences with beta blockers. For POTS or any other reason. I'm consdering them for my anxiety and rapid heart rate but have always heard mixed reviews.

If I drink alcohol I black out, for hours. Almost an hour after drinking. And the hang over last about 3 days. Needless to say, i dont drink.

Does anyone have any kind of swelling in any way shape or form? If so, when and how does it present itself. I also have erythromelalgia and am trying to distinguish the two disease but doctors are of no help sadly. So I'm seeinh which symptoms others have with the same disease. I get swelling of my hands knees and especially feet/legs.

I ask this because recently i see a lot of changes in my sex life. Im asking in a serious manner, I am now feeling miserable after sex. My cheeks get very hot and flushed to a point ive never experienced and immediatebly afterwards my heart rate elevated anf wont lower for a few hours. While sex is physically exerting I kbow, i suddenly am finding myself not able to keep up anymore and am almost scared to even do it now..

Make sure you find one who listens. I write down the things I need to talk about and my symptoms. Always helps me and the doctor. Good luck!

Yes and no. The heart can beat irregularly to the point where its so irregular and fast that its not even pumping properly and sometimes the heart can just stop. It really depends. I'd Google heart attack to fully understand what happens but any doctor I've gone to says the chances are beyond low and no one has had a heart attack from a panic attack. they're just scary. Not deadly.

I would talk to your doctor and have your heart checked out. It's comforting knowing your heart is okay but I really don't think its too much of a worry.

I've had panic attacks for years. My heart rate gets up to 170 and my BP up to 150/105. Pretty **** high. Doctors never seemed worried about it. The high blood pressure usually comes with the first part of the anxoety and the build up to the panic attack. I wouldn't worry too much. As long as your BP is normal when youre not anxious its not that bad. It's scary of course. But the body can handle a lot. Just keep track of it. Its a scary thought though so I know how you feel.

Does anyone else have any sort of swelling at all?

My hands and legs and knees swell all the time.

Does anyone else get sharp pains in their head upon standing quickly, I almost always get this and get to grit my teeth while it passes which usually takes about fifteen seconds.

I drove from Arizona to Alaska. Took a week and aggravated my symptoms. I made sure I got out of the car at least every two hours. Stayed hydrated and ate very well. Long car rides are tough. just go prepared. Way safer than flying.

I do the same thing, it's a vicious cycle. I always worry about every little thing. Last week my nail beds were turning blue and in was so scared that it kept me up hours each night. I still don't know why they were blue. It's not as bad anymore but I can definitely sympathize with you. Perhaps you could try melatonin?

My doctor said taking this would not be safe for my condition and therefore I am not able to take any birth control.

Like Kalamazoo I also have erythromelalgia along with POTS. Or at least I think I do. I was diagnosed with it. Then that diagnosis was dismissed. And then last December I was rediagnosed with erythromelalgia.

I'm takig neurontin for it now but have had a hard time staying on it. I saw my doc the other day and he told me to persist as higher doses (when I get to them) will probably help me.

Do you take anything for erythromelalgia, Kalamazoo?

blue

No I don't take anything, I just try and limit the temperature in my environment and stay off my feet. It happens in my hands too and in my knees.

Is there any other symptoms present? I have POTS and erythromelalgia. Might look into that. But usually swelling burning tingling and redness accompany that.

I've read fish oil promotes vasodilation. Isn't POTS too much vasodilation (in some) which creates the swelling and redness? So I'm curious if this would help or worsen. I have bad circulation and my fingernails sometimes turn blue and I'm not anemic so I want natural ways to improve that but I'm worried about worsening the POTS.

Anyone else have a completely normal echocardiogram besides a rapid heart beat?

Yep, I have to eat roughly ever two hours too or that hypoglycemia will get me!

Maybe it's your blood sugar and the apple gives you a pick me up ?

when i lay down blood pools in my knees, i can feel my pulse after a while and they start hurting. Then when I get up they hurt really bad but then feel okay after being upwards for a while. They are also kind of hot. It might be my erythromelalgia but I'm wondering if POTS is contributing.

Any body else have this or something similar?

Wow! So many people have this. And no I don't have any kind of sensor, I don't want a reminder of how high my heart rate is because it jist makes me more anxious. I can tell what my heart rate is all the time without checking for a pulse because of this pounding in my body. Mine is worse when I've been sitting for a while or if I've got a headache. I can also see my chest move my shirt up and down and can see my heart rate in my vision too. It's extremely annoying and keeps me up at night. I cant lay ib my left side because the soynd of my heart is too prominent when I'm trying to sleep.

I always feel like my heart beat is beating so hard. When I lay down it's in my back throbbing, when I lay on my side, it's in my arms and chest. If I'm sitting I can feel it so much in my butt (sorry, couldn't think of a better word) it just feels so prominent. And I wonder if I'm just paying close attention to it or if this is because of the POTS?

Mines always runny. Especially when I need to be quiet during an exam or something all you can hear is my sniffles.

As stupid as this sounds, its so hard for me to change me daily routine any more than I've already had to because of thos disease. Any time I change it just a little more it makes me so frustrated. My day revolves around, therefor my life does. It's so frustrating! I guess I need to finally give in and try these tips. I miss wearing my rings but can't because my hands are too swollen. Thanks ladies, glad to know I'm not alone in this symptom.