New here and question please help!!

[amy777]

I have just been diagnosed with POTS. I have all the symptoms. Dizziness, palps, low bp, tachycardia, chest pain, tired all the time. But I do have a question??? I know some of you say your heart rate rises when you stand. Mine goes up only sometimes when I am doing something small like walking up 10 stairs or walking in a store. This doesn't happen all the time just some times and it usually goes up to like 120-130. Anyone else have this?? I am on a beta blocker which helps but doesn't stop it totally!!! Also, do those salt pills really work?? My cardio gave me a script today and I don't know whether or not to take them??

[Merrill]

Hi, Amy. Welcome here. Sorry to hear you've been diagnosed w/Pots. It can be a drag--but look at all the amazingly goofy things your body can do! Walking a few stairs? Heart goes wacko! Not many people can boast such a creative response to such minor stimulus! But all of the people on this forum can, and we're here with you and for you to help answer questions and commiserate. Stay cool. Remember that your heart is doing what it's supposed to do--keep the blood up to your brain, lungs and back to heart and keep you going. Don't worry too much about the numbers. It can be a little uncomfortable and scary sometimes, but hang in there.

Yes, is the answer to your question. I can do 153 in the morning just getting ready to take a shower. No stairs required! But it comes down again (tho it's always over 100 when I'm awake) and I'm just used to it. By the way, you don't want your beta blocker to "stop it completely." That would be a bad thing.

As for salt pills, I take them and I think they're great. I'm careful to always take with some food, though--it's a great way to make sure you're getting as much sodium as you need. (Sometimes I forget to bring w/me to work; on those days, I make sure to empty a salt packet into a glass of gatorade once or twice ... in addition to adding table salt to food and snacking on salty nuts etc.) I've also been known to just dissolve one in a glass of tomato juice or gatorade if I didn't feel like swallowing it.

I didn't need a prescription for the salt tabs, tho my pharmacist did have to order them for me. Athletes, runners etc. take them to replace lost salt ...

Are you wearing compression hose yet? If not, get them and they will become your new best friend. Try 30-40 compression (get from medical supply store or order online from Ames Walker). I prefer Medivan Elegance 30-40 thigh high ones ... they make walking around much more fun! (I can't bear to be without them--my legs absolutely drag with heaviness ... compression is GREAT.) Actually, if you get a prescription for those, your health insurance may pick up the cost (under durable medical goods) for several pairs a year. They ain't cheap.

Good luck with those salt pills ... try em! What've you got to lose!

[yogini]

Amy,

Welcome to the board, glad you found us! My symptoms definitely come and go, and I can't figure out any reason (other than that I am worse around my period). Sometimes when I walk, I have a high HR and am terribly dizzy and other times I almost feel normal. I also get sudden attacks where my HR suddenly goes to 150 or even higher, even though I am on a beta blocker. The attacks would be longer and much worse without the beta blocker, though.

Dealing with POTS involves a lot of patience, trial and error. Salt pills, eating saltier foods, drinking tons of fluids and wearing compression hose has helped many of us on this board. The salt takes a few days to really start working. And if you still have heavy symptoms after that, you can talk to your doctor about increasing your dose of BB or trying other medicines. It's a slow process trying to get the right combination of treatments, but you can definitely get there.

Good luck,

Rita

[Guest tearose]

Welcome amy! Glad you found us. Yes, those swings of heart rate are not unusual for pots people. You will learn what triggers you more. Whatever sets off your autonomic nervous system will also be more sensitive when you have a cold or are tired.

Salt pills work for some...as you will also learn, what works for one person may not work for you. You may also be able to manage getting more sodium in your daily diet.

My suggestions for newcomers would be: learn as much as you can, "build" a medical/wellness team of professionals you trust, scroll through the archives and absorb the experiences of others there, and keep a hopeful attitude.

If I think of more I'll let you know.

I've got to start thinking of what's for dinner...best regards, tearose

[Guest Julia59]

Hi Amy,

In the beginning I had tachycardia spells which seem to happen even on the beta blocker. But I imagine it would have been much worse without them. I feel for you as I know who scarey it can be sometimes. However, the doctors never seemed to be overly concerned. Dr. Grubb who is an autonomic specialist/Cardiologist/electrophysiologist knew it was from the POTS.

For some people the heart racing seems to come in spells---meaning it comes and goes away for a while.

Watching stress levels is important as that can be a big trigger to messing with your heart rates. Dr. Davis, a phychologist here in Toledo was a big help in getting me to recognise when my body is trying to tell me something. This helped me because he taught me to listen to my body ----listen to the subtle changes before I get to a stage where my Autonomic Nervous System crashes---which is usually when I would get those tachycardia spells. The body will load up on adreaniline when stressed----------and some people with the hyper-adrengic form of pots are especially sensitive to their own adreniline.

Please try not to worry. I know how scarey it can be, but it's just your body's way of trying to compensate--------doing it's thing to keep the blood circulating so your brain gets the oxygen it needs.

Take care, I hope you feel better soon.

Julie :0)

[funnyfrog]

Hi Amy - I am glad you found us - Sorry to hear you were diagnosed with POTS also - You will come to find that you are going to have good days and bad days with this, don't let a bad day depress you or drag you down - Take one day at a time because the symptoms fluctuate so much, even on all our medications and don't get to bogged down with the #s of your blood pressure or heart rate-Go by how you are feeling and try to live as full a life as you can. I wish you the best of luck. Welcome!! Beth in NJ

[geneva]

Hi Amy. Sorry that you have been dx with POTS but really glad that you found this group. Shared experiences can help you learn more about this strange condition. As you can see HR can be consistently high -- mine always was at the onset when I stood -- or hit and miss, which is how mine is now. Stress really does play a very active role in managing POTS....something hard to do as you adjust to an illness like this, but the better you can reduce stress, the better you will probably feel. Keep asking questions!

[DancingLight]

hey amy!

welcome here. i am glad that you found us! i hope you will find the board a good source of support and information.

i just feel like being a noodge (did i spell that right?) to merrill right now...he-he...

i agree with her about the compression hose 100%...but i vote for the juzo brand--the really sheer ones.

as for salt tablets. i didn't really have a lot of luck with them...but it sounds like a lot of other folks have. i really don't know how merrill drinks one in a tomato juice! eeek! i wish i liked the taste of salt more...

everyone had good things to say to you already as to the hr stuff. i take a beta-blocker too and for me that made all the difference in the tachycardia. and, as previous posts said, your heart IS doing what it is supposed to do to keep you from fainting! so, that is a good thing!

as for salt tablets...when i did try them, i couldn't get down the plain ones. they dissolved so quickly and even with a LOT of water, i puked them up. sorry. just the truth. so then i got this brand called thermotabs...which are coated in potassium and are MUCH easier to get down. you might have to special-order them, but they ARE available--despite what your pharmacist might say! i think my pharmacist just thinks i am crazy with the combination of things i take.

mostly, i don't have anything to add, despite the fact that i seem to be rambling right now! i hope that you will be able to find relief from your symptoms and see improvment with time.

if you get a chance...fill out the who, what, when, where and why post floating around...it is such a great resource b/c everyone has put their name, age, etc. it will help us get to know you better!

again, welcome...

later alligator!

emily

p.s. tearose...what's for dinner?

[Merrill]

OK, miss emily (you better watch it or I'll out you on your first name!), you caught me in what I guess on re-reading is a bit of a white lie. True confession time: I never have dissolved a salt tablet in a glass of tomato juice--tho frankly, I see no reason why that would be bad! V-8 is loaded w/sodium ... why not salt some plain ol' tomato juice? It would probably taste better! (I save money on powdered gatorade at work--which happens to be low in sodium--and add salt to that, either a tablet or a table salt packet ... and it tastes MUCH better.)

Here's more of the real truth: I cannot swallow a salt tablet with water either! I gag, I choke, it simply won't go down! (and trying sets off unbelievable tachycardia) However, I have no problem swallowing it with V-8 or tomato juice or with gatorade. I don't know how folks drink salt water ... it makes me choke ... and I think the pill starts to dissolve as Emily says and then I can't swallow! But you can't taste it with the gatorade or tom. juice. So there you have it. I love the idea of the coated thermotabs and will try them next time I have to restock. Thanks for the tip!

BTW, Emily's givin' me the bizness about the Juzo vs. Mediven because she bought the Medivan one size too small. These are the faces she makes when she puts on the Mediven. Have I got that right EE?

merrill

[yogini]

Emily,

Thanks for the tip on the coated salt tabs. I can't stomach the regular ones either. I hate salting my food and drinking soup broth is tiring!

-Rita