lloppyllama

Hello, I think that it should be ok if its the same "vibration" kinda thing as a TENS unit, my doctor who is my POTS doctor knows and approves of the use of my tens unit, and i have tachycardia like you do. Nothing too serious, but its deffinetly there. I think that it would be ok to use POTS wise since is the same kind of thing as a TENS unit and my doctor told me it is not harmful to my body since i have POTS to use a tens unit. Hope it works for you!

So i woke up in the night from my chest and left are hurting really bad. My symptoms seemed almost like a heart attack.....but i doubt it... But anyhow what it was, was it felt like haveing about ten knives shuved in the from of my heart and also in the back...then down my arm there was shooting pains. Has anyone else had this, i dont know it was pretty freaky though! Oh yea and it only happened the worste when i was laying down....still when sitting up or proped up, but not as intense just like my usual chest pain. Thanks for listening...any help or feedback would be great thanks!

Hey sorry, i just got up bad night of sleep! Um i use a TENS quite regularly and my doctors know and say that is fine, and my doctor specializes in things like POTS. So i dont know much about the EMS....wait what does it do...i might have had it used on my when i was in PT.....if so i think it would be fine. What that was is alot like a tens unit just a larger machine, and felt a little bit different. You say excersize machine so that is kinda what through me off..... Let me know and i will be happy to help you out!!!

My hair is alot like you described yours, LONG, curly/waivy, and frizzy! Gotta love it! I really like having long hair but dealing with it can be a pain. I usually lean over to wash my hair, when i am really sick i have my mom wash it, she thought i was really weird the first time i asked her to wash my hair, i still dont think she really gets that it bad for me! haha....but thats ok i guess eventually! I cant straighten my hair anymore since the straigtener gets to hot and make my symptoms flair from the heat, not to mention the lifting of my arms above my head! If there is anybody else out there who has good tips for dealing with hair they would be greatly appreciated! Thanks!

Wow thats very interesting, probably explains why most of us were told we were just depressed before actually getting diagnosed wiht POTS or other autonimic nervous system problems. Thats very interesting how many of the things overlap, when i took it it said that i was depressed, and i am still a very happy person even having to deal with this cruddy illness. Thanks for sharing!!

I really dont know much about that, however you mentioned flushing toxins out of the body, and well i get massases (sp?) and those are supposed to also "flush toxins" and they seem to help with my symptoms (for example some it has helped: hand tremors, arm knumbness, migraines) So i dont know about the hyperharic chamber, but i know that this form of getting rid of toxins did help. Good Luck! ~Mary

Flop your description of how it happens is very very similar to mine, i notice it alot when washing my hair, or trying to just put my hair in a pony tail. And it deffinetlly helps to bring my arms back down by my sides. I think your explenations makes sence and is seeming to be quite accurate.

I get tachy alot so im not sure how that factors into when i have weekness, however i have noticed a couple times that after i get really bad tachycardia i will be quite wiped out, but my tiredness may be from tachy other times too and im just so used to it happening, and me being tired all the time that i dont actually realize they are tied together. Like lauren said if it is worrying you, its always best to check with your doctor just to be on the safe side! Have a good evening! Mary

Wow that is awful! Its hard to believe there are so many doctors out there who specalize in things and wont be willing to help people in the area they specalize in! There are also alot of good doctors too, it just seems like its alot harder to find those!! Hope you find the right doc to help you soon!! Good Luck!

Hey Sara! Welcome!!! I havent been a member all too long, a little less than a month i think. But i have found it to be a great help in coping!!! Glad you finally got your diagnosis, its such a pain to be left in the dark. Welcome, hope you have a nice day!! Mary

Hello, Its too bad you havent been able to find anything that helps yet. Metoprolol is the first BB i have been put on and so far (a little over a month now) i would say that it helps!!! It has slowed down my heart rate when i am at rest significantly. So for me i have no complaints about the drug, and from my experience would say that it is deffinetly worth trying! Hope it works for you if you give it a go!! Good luck! Mary

hey, I forgot to add before that i am on a beta-blocker, and it has been very helpful in lowering my heartrate because my heart rate gets very high, and it deffinetly makes a difference in reducing it. so that might be something goo to check out because mine is only 4.00 regularly priced(that is without insurence, it only costs like .80 with mine, but yours might be differenet) so with the money issues that could be good, because that is once month worths supply. have a great night!

Hey anna, My name is mary, im 15 so im about your age, there arent alot of people here our age so it will be nice to get someone's point of view my own age! I sent you a PM a few seconds ago before you added your post so you can check that out. Welcome!!!!!!

Hey Lauren, First off I want to welcome you to the forum, it has been a great help for me in dealing with all my POTS issues! I do take an anti-depressent, it isnt a replaicement of florinef, for i was never told to take that...or yet at leaste, but it is for pain management when trying to sleep at night. It helped a great deal for about the first 10 months i was on it, however now i think my body is starting to get used to it and its not working as well. I dont really have anything to help you for your other questions, but im sure there are others here who would be able to help you out! Good luck, glad you found us, too bad you have a reason to be here, however since you do i think it will be a HUGE help in dealing with everything.....i know when first being diagnosed it can be quite overwhelming, i was only diagnosed in mid-April, but have since learned a great deal of information about POTS. Hope you have a nice evening! Mary

Hmm, thats good that it wasnt anything serious and just the darn pots acting up again, but I know how important going to church services on sundays is for me, so understand how you would feel when you have to leave. I have had to stay home some sundays, however i have been very fortunate, which is good since my faith is such a huge part of getting through this in one piece! Hope your doing better now! Have a wonderful day! Mary

Hello, I dont have MVP but experience this too, like i will wake up and have tons of energy and then i will be like yay i can finally do stuff!! so i will and then i end up overdoing it and crash, i dont know if mine is the same thing, since yours isnt necissaraly from over doing it, but i guess it might be...not too sure. But i know one thing no matter what its from it is very annoying to one minute have tons of energy and then the next your "dead". Have a nice evening. Mary

Hello Heidi! I used to take midodrine for migraines however it did absolutly nothing for me so they took me off of it, however I dont recall having any bad side affects. The meds im on now would be nortriptyline for pain at night so i can sleep, metoprolol for my BB which you said you cant take, and then I take iron for RLS. I dont know that this would be of any help to you other than possibly the nortriptyline possibly you night problems but i dont know that it would get rid of the cramps, maybe just help you sleep through them??? Sorry i wasnt much of a help Hang in there, best of luck!! Mary

Oops hehe i did know that silly brain fog!!!! Yes two pair a month would be awesome, but actually rather waistefull too! Have a great night!, or morning i guess for you, i think you said you had a doc. appt. today too, hope that goes well for you!

Awesome! Glad that worked out for you as those things are quite spendy, but in your case you only get 2 a month if i remeber correctly. I will have to try that one on the run/ladder i have since it worked for you, hopefully i will be as lucky and succesfull, thanks for letting us know that it does in fact work even if its a larger run! Have a nice night!

Right now i am on 50mg. I used to take gabapentin every day like 1,000mg i believe...but then it stopped working since i was on it for a while, man that seems to happen alot! I will deffinetly let my doctor know when they call me back this week, because it certainly is annoying to be more tired than the norm. Thanks for the help! Mary

I am on nortriptyline for getting to sleep and staying asleep since i dont sleep well because of pain. Lately i have been waking up several times during the night from being all tachy, my heart is just going so fast it wakes me up. Its really annoying because i then cant get back to sleep for like an hour and then once i do, i wake back up again cause my heart is racing! I'm not sure if my meds just arent working as well since i have been taking them for about 10 months now or if i just never had problems wiht my heart racing during the night before. But if anyone knows of any ways to make this not happen so much, or get back to sleep if it does, i would really apprechiate the help, thanks. I guess i just might have to change my meds, idk we will see, i thought these worked pretty well but maybe just not for such a long period of time. Thanks, Mary

hello everyone, I was just thinking and from reading a post from last week i saw that for some people moving fast ( like in a car or on their scooter) is bad for their pots of other dyautonomia problems, however i was wondering if for some of us it can be good. I'm wondering if its like watching it specifically what is bad cause you get dizzy, but if you dont watch (which would be bad is your driving the moving fast thing...but if not) then actually since your moving fast its not as hard for you body to work against gravity to circulait (sorry i am an awful speller!!) your blood. I have just noticed that i it actually makes me feel better to ride in the car sometimes, other times it makes it worse so it probably depends on what that days symptoms are primarily from, but it just seems strange how it can make me feel better to be moving like that. Idk its just a thought, i also noticed that when i went for my walk today that the wind outside actually kind of helped! Im in MN and its really windy right now its crazy!!! But anyhow it was strange but it almost seemed to be helping i havent come up wiht a theory as to why this is but i did notice it. Thanks! Have a great day!! Mary

Thanks for the replies! A more in depth way of describing mine would be that i feel like im not getting enough air to my lungs and then i get dizzy and lightheaded from that, it doesnt seem like it would be hypervenalating since it happens at random times when im not overly emotional about anything. That usually happens just when i am sitting down, or standing sometiems, but i havent noticed that excersising makes a difference with that kind, i mean i get tired when i excersise and get the normal "out of breath" feeling but other than that no. There is one more kind i experience, its like i wake up and i cant breath or im not breathing, and i cant talk and im really out of it, this has happened like 3 times i think, and its very scary. I dont know what could be causing those things but i will deffinetly tell them to my pots doctor when i see him next month, if you guys have any ideas feel free to share! Thanks! Mary

I have recently started having trouble breathing, i tried doing the whole breathe in through your nose and out your mouth, it helped somewhat but not alot. It was a scary feeling and has been happening alot lately...just wondering if anyone has any tips or experiences this too! Thanks, Mary