Rachel

My doctor told me that blood pooling in my legs wouldn't damage my veins. But a friend just told me that her doctor said that it would cause the veins to stretch out and then make POTS worse because that would allow more blood to pool. What have you heard from your doctors? I'm trying to figure out if I need to lie down or put my feet up as soon as I'm in pain from blood pooling, or if it is ok to sit with pain for a little while.

Rachel

Maxine,

I took Keflex a year ago for an infection and it worked very well. I started to feel some relief within an hour of the first pill. I never noticed any side effects from it.

I hope it works well for you and that the infection clears up soon. I'll be praying for you.

Rachel

Lauren,

I'm so sorry that your symptoms are getting worse. I'll be praying for wisdom for your doctor. I hope things get better for you soon.

How long have you been on Mestinon? I was just wondering if that could be causing some of your problems. When I tried it 2 years ago it worked for a few days and my symptoms improved some. But then they gradually got worse over the next two weeks and I was worse off them before Mestinon. We think the medicine just built up in my system and was then too much for me. I went off the meds and my health then went back up to baseline.

Hope you find some relief from your symptoms soon.

Hugs,

Rachel

Yes, I often get nausea as one of my symptoms. It doesn't always go along with tachycardia, though. I find that lying on my side is less nauseating than laying flat on my back. And drinking peppermint tea helps some too. But mostly I just have to wait it out.

Oh yes, Chick-fil-A is a great place to eat! We just had lunch there today. Chicken nuggets and waffle fries are my favorite! One of the nice things about living in the south again is the Chick-fil-A restaurants that are all over the place.

Lavender,

You live in Alaska?!!! I wish I had met you a few years ago! I used to live in Alaska. I just moved from Alaska to Georgia in October.

An electrophysiologist is a cardiologist who is trained to diagnose and treat heart rythm disorders. There are one or two at The Heart Institute in Anchorage. Here is a link to their webpage with the physicians list:

http://www.alaskaheart.com/pcsites/physicianList.cfm

A new ttt would probably be a good idea. Like Ernie said, a lot can change in 10 years. I'm sorry the guy running the test was so inconsiderate. Sometimes medical people forget that patients are real people, not medical objects, and that we have feelings too.

Being nervous and stressed can make pulse and bp readings different. Also, sometimes doctors will say that your pulse and bp readings are high only because you are nervous. And they just ignore the abnormal rates. I had been going to doctors for a year before a nurse finally commented, "You're pulse is a little fast." That's what finally got us on the right track.

I would definitely keep looking into dysautonomia. Unfortunately, you might have to go to the lower 48 for a good doctor for dysautonomia. Doctors in Alaska just don't have much experience with it. For example when I went to my neurologist in AK (she only had 1 or 2 other POTS patients) she would ask me, "What do you want to do next?" And I'd come prepared with a list of symptoms, a stack of research, and a list of meds or tests I wanted to try.

I'm so bummed that I didn't know you when I lived in Alaska! If you have any questions about doctors in Alaska that I've been to or heard about feel free to send me a pm. I'll help in any way I can.

Rachel

P.S. Enjoy the winter for me! I miss it already!

Lavender,

You live in Alaska?!!! I wish I had met you a few years ago! I used to live in Alaska. I just moved from Alaska to Georgia in October.

An electrophysiologist is a cardiologist who is trained to diagnose and treat heart rythm disorders. There are one or two at The Heart Institute in Anchorage. Here is a link to their webpage with the physicians list:

http://www.alaskaheart.com/pcsites/physicianList.cfm

A new ttt would probably be a good idea. Like Ernie said, a lot can change in 10 years. I'm sorry the guy running the test was so inconsiderate. Sometimes medical people forget that patients are real people, not medical objects, and that we have feelings too.

Being nervous and stressed can make pulse and bp readings different. Also, sometimes doctors will say that your pulse and bp readings are high only because you are nervous. And they just ignore the abnormal rates. I had been going to doctors for a year before a nurse finally commented, "You're pulse is a little fast." That's what finally got us on the right track.

I would definitely keep looking into dysautonomia. Unfortunately, you might have to go to the lower 48 for a good doctor for dysautonomia. Doctors in Alaska just don't have much experience with it. For example when I went to my neurologist in AK (she only had 1 or 2 other POTS patients) she would ask me, "What do you want to do next?" And I'd come prepared with a list of symptoms, a stack of research, and a list of meds or tests I wanted to try.

I'm so bummed that I didn't know you when I lived in Alaska! If you have any questions about doctors in Alaska that I've been to or heard about feel free to send me a pm. I'll help in any way I can.

Rachel

P.S. Enjoy the winter for me! I miss it already!

Thanks, Emily, for keeping us posted.

Melissa, Glad to hear you're getting better. Hope you can go home soon!

Lavender,

Welcome to the forum! I'm glad you found us!

Your story sounds like many of our stories! I'm so sorry you haven't been able to find a doctor who can help you. Have you ever been to an electrophysiologist or a neurologist? If not, it would be worth checking into. And definitely see if you can get a tilt table test done.

Have any doctors made comments on your pulse and blood pressure before? Or did you just recently discover on your own that your pulse and bp aren't normal?

I hope that you can find some answers here. Feel free to ask questions! I'm always amazed by the kind and intelligent people I find here.

Let us know when a doctor finally figures out what's going on!

Rachel

Hi Cindy!

Welcome! Glad to have you here. Hope you find this place to be helpful and encouraging.

Your symptoms are "normal" here on the forum!

Rachel

Good topic, masumeh.

Coping isn't always easy. There was a grieving time for me when my POTS first started, and again when it became disabling. But I can cope because of my faith in Christ and knowing that He has a plan and purpose for me in all of this. I've learned to accept POTS, move on, do all I can to improve my quality of life, and enjoy life despite my circumstances.

I'm willing to share more with anyone, just send me a pm.

Rachel

I was wondering if sensitive skin is common for POTS patients.

My skin is always extra sensitive now. But when I'm having a really bad day my skin is so sensitive that it is hard to function! It makes hugs uncomfortable. I get really jumpy from just a hand put on my shoulder. It is even irritating to touch my arm with my own hand! And if I try to sleep and the sheets move just a tiny bit on my legs it wakes me up!

Does anyone else have this happen???

Rachel

I've heard the tall, skinny, and female stereotype for POTS patients. I used to be tall and skinny. I'm still tall, but not quite as skinny. When I started haveing life-altering symptoms I was 14 and a year round swimmer. But POTS has certainly changed my exercise habits, so I'm not skinny anymore!

Rachel

Thanks for the links, Gena. I'll check them out.

No, it's never happened to me because of meds. Sometimes I'm late just because, but it has never seemed to be because of midrodine or any other med.

Rachel

I'm sorry the antibiotic treatment is so rough on you. Hope they help and I hope you see some improvements soon.

Rachel

You all have me laughing! Glad we can share our brain fog funny moments!

DizzyGirl, I do the same thing with making multiple lists! I always forget where I put the shopping list, or list of people to write, or whatever. And I can never remember everything at once. So I have nearly a dozen partial lists all over the house!

Quiet_Spike, you reminded me of another one of my difficulties - I have a hard time turning on the right burner on the stove. I have to think and think and sometimes it still takes 2 or 3 tries to get the correct one! I don't cook anymore, though, so this isn't an issue usually. But sometimes I do still try to heat up the tea kettle on the stove. But my husband pours the water. I don't trust myself with a kettle of hot water.

Again, thanks everyone for the smiles.

Rachel

Thanks for the update, Emily. I'll keep praying for Sunfish. I sent a card to her, but it didn't get out until today. So it will be a belated birthday card.

Let her know we care about her and miss her.

Rachel

I'm right there with you. The last week has been extra tough.

Thanks for letting us know! I just finished signing up for igive.com.

Rachel

Margaret,

Where do you find the BFO cushions? I've looked online, but didn't find any. Is there a particular online store that would be good? It's hard for me to go out to stores to do shopping. I've checked spinlife.com, but theirs were mostly the expensive ones.

Rachel

Some brain fog blunders of mine:

"Greg came over to get the red stuff. You know...the red stuff. What's it called? It's red." ---I was talking about ketchup and for the life of me couldn't remember what it was called!!

Yesterday I called the vacuum cleaner a "trash can."

Usually my sentences come out something like this:

"Uh... they are in a drawer... a rubbermaid drawer in the bedroom.. uh.. the closet."

It's a good thing I can type on the forum. That way you don't hear the weird breaks in my sentences when I can't remember a few words!

Dear Niki,

I'm so sorry! That was a mean and terrible comment for that guy to make. It gives you a picture of his true character. If all he is after is the outside then he's not a true friend.

A size 3/4 is tiny! I'd be thrilled just to be an 8 again! Try not to worry about the weight gain. Hang out with some friends who like you for you - whether you are a size 0 or a size 3. Work on your inner character, put a smile on your face, and know that you are beautiful.

Rachel

I have POTS, OH, and I'm still trying to figure out which other things I was diagnosed with are actually true! An antibody was found in my blood that antagonizes m2 muscarinic receptors. Basically this antibody messes up the process of the brain sending messages to my heart, lungs, veins, and other smooth muscle tissue in my body. We found this in a study done at Johns Hopkins. M2 receptors are a fairly new discovery, I guess. I asked my neurologist about them because I was trying to do more research. She seemed kind of embarrassed that I knew as much about them as she did. It must be rare to have an antibody to m2 receptors because there is very little info on them online and I've never found anyone else with this antibody.

Rachel

It's confusing because different doctors use different terms interchangeably.

I was diagnosed over 10 years ago with numerous things. I'm in the process right now of going back through my medical records to find out which ones are technically accurate, or which ones were just a different name for something similar to POTS. For example my ttt clearly showed POTS and severe orthostatic hypotention. But my cardiac electrophysiologist didn't always use the term POTS or OH.

The National Dysautonomia Research Foundation says that POTS is one of the three main categories under Orthostatic Intolerance. It lists Mitral Valve Prolapse Dysautonomia and Idiopathic Hypovolemia as the other two OI conditions. I think there are other forms of OI too. Basically OI is a blanket term that covers many different types of Orthostatic Intolerance. So if you have POTS, congratulations, you have OI too.

Good luck sorting through all of the terms and trying to figure out what each doctor means by each term!

Rachel