Please somebody help answer!!!!

[bamagirl]

Is POTS and dysautonomia something that will happen all day every day? I mean do most of you guys get tachy every time you stand or does it come and go? I will be ok for a few weeks and then have a strange spell, mostly at night, like I will get a strange warm rush over my body, then both of my arms will start to tingle, then my heart rate will go up to about 150 for about 2 mins, then I get nauseous, then it will go away and I will be tachy and feel terrible for about a week. I will have migraines, be extrememly fatigued, feel drunk, and my skin will burn. Then after a few days I will slowly get back to ok and I am not tachy again until my next "spell". Anybody else get these spells or is it every day all day?

Thanks guys!!!

[Dawg Tired]

My symptoms tend to come and go. I have times when it is all day every day but then I also have days when I have almost no symptoms.

[Poohbear]

I have good days and bad days but most days have symptoms (they can be to varying degrees though).

I too have a lot of trouble at night like you describe. My worse episodes at night seem to be correlated to out-of-balance hormones and my cycle. Getting these more in control has helped a lot but I still have exceptionally bad episodes at night.

Lately I've noticed that since I've been going to bed much later and sleep later in the morning I don't tend to have as many of these middle of the night episodes. It could be coincidence but it doesn't feel like it....it feels like there is something to this I just haven't figured it out yet or understand it.

[persephone]

Hi Bamagirl- are you new? I haven't seen you here before.

Don't worry- I don't think everyone gets the symptoms as intensely as you all day every day. I swing in roundabouts- I have weeks where I'm really dire- can't get up without feeling like death. And then I get weeks like the one I've just had--where I feel heaps better than that and even make it to the gym(but I'vepaid dearly since, as my pulse reached 192 getting out of the bath after my workout)

It's very much a day to day thing. Good luck, and hope to see you post often!:-)

[MomtoGiuliana]

It is typical for symptoms to wax and wane. However, many POTS patients feel better overall with medication (although what works best for you may only be found by trial and error) and increasing fluids, salts, using compression hose and other non-medical treatments.

Katherine

[calypso]

My symptoms are constant. I get tachy each time I stand up and my pulse slows as I sit or lie down. I do better on a small dose of beta blocker and the antidepressant Effexor, which stops the attacks of major tachy that I was having on top of the regular heart rate increase each time I stood.

Amy

[nantynannie]

Hi Bamagirl,

I am wondering if your symptoms are more or most noticeable around your cycle? Many of us get worse around that time. For me, though I have symptoms everyday, the week after my cycle is usually the worst. Hope you find lots of support and answers to some of your questions here.

[hockeykid]

Most of my symptoms are pretty constant but a few of them come and go. Like hives, I won't have them for several weeks and then all of a sudden for no reason I start getting a bunch of them for no reason. I get them for about a week and then they mysteriously go away. Too weird. I get a couple other like that but for the most part it is pretty constant. But my tachycardia sometimes doesn't come at all when I stand up and other times it's going full boar. I can't seem to figure it out. I also have good days and bad days.

[faithinspires]

My symptoms seem to be constant. Worse early in the day, better in the second half, also during the night. I have my blood pressure drop and my heart rate increase everytime I stand. My daughter with this condition who is on different meds tends to have her symptoms come and go. She will have a good week, overdo it and then struggle for a bit. She wasn't doing that well at first, for a time she was pretty much bed ridden, but she has improved tremendously over time.

[Sunfish]

bama -

welcome! we're glad to have you

for me i have many signs/symptoms that are constant but others that wax & wane, either in being there at all or in their severity. years ago i felt pretty okay for long amounts of time but would "just" faint now & then. those were the days

melissa

[Gena]

Welcome! My symptoms are mostly at night too...I can go for long periods of time without having symptoms though (well, at least not major ones). I function pretty normally during the day, but the heat can really get to me and make me symptomatic.

My BP drops very low at night, so regardless of how good or bad my symptoms are, I always use a wheel chair to roll myself to the bathroom in the middle of the night, as this helps prevent any major tachy spells from trying to stand and walk after lying in bed for hours. When I first came down with POTs, I got a lot of those adrenaline rushes and tachycardia in the night just as you describe. Now it's mostly just tachy, arrythmias, chest pain and sometimes dizziness.

You'll find lots of good info and support here.

Gena

[pamela]

Hi! Certain symptoms come and go for me to. Though I am always tachy it does get worse some days. My worst problem is getting up everyday. I here the alarm, the dog crooning in my ear to get p and I really try. Luckily he is a hard head and trained himself to wake up at 5:oo am to pee or eat but mostly he watche me take my meds and try to start a pot of coffe. Then we lay back dwon for an hour and he goes out and I get to dealing with the day.

I am worse to right befor my periode, PMS is wors, GI problems are worseetc. THen the week after I have lower BP and a highter ht rate,

But I went for 3 weeks with only mild exhauston and felt o.k periode. i avoided standing up to fast and singing while standing up. Church goin is gret but I cannot sing while standing uo any more.

Well, good luck and the best advice I say is take a recors of how you feel when and write diwn any unusual stresses you may have come in contact with

Pam NC

[mom4cem]

Hi and welcome. My episodes sound similiar except they are not limited to the night. I just had one yesterday after a good month of feeling pretty well. I could feel the tachy coming on and my rate jumped up to about 130 and took quite a while to go back down. I felt shaky and had adrenaline just hanging around all night and still this a.m. I feel yucky still.

Welcome and I am sure this is just rough time for you and you will get through.

[pamela]

Than you for the encouragement. Evidently the 19th was a very bad day for me. I just read my post, I need to apologize for the spelling,typo's and run on sentences. Yesterday I went to the Cardio Doc and he said that I looked a little pail. Upon examing me he said its a no wonder that I look so rough. I was tachy and arrythmic but my BP was catching up to where it should be when I stand up.

He is going to keep my meds the same until some other tests are run.

Oh we!! We did find out that I have the MVP thing. So more reading to do.

Bye for now

pam

[Dizzy Dame]

hi bamagirl,

I've noticed that my worst symptoms come and go, but I get tachy almost every time I stand up for more than a few seconds.

I've noticed that most of us are saying that our worst problems come at night, the same is true for me. I can actually tell how bad my night is going to be based on how my day is, and my worst hours are between 8-10pm. I wonder why that is?

Anyway, I don't think fluctuations in the severity of symptoms is abnormal based on what everyone's been saying, and from my own personal experience.

Hope that makes you feel better.

-Lauren

[Guest Julia59]

Hi Bamagirl,

Welcome to the forum! I also am at my worst at night. For me ---a lot of my symptoms get much worse with exertion. I think if I would try to run it would kill me---

I've been having tachy spells at night lately, but of course they are blunted some due to the beta blockers. That doesn't make the spells any easier. I still get the tremors and chattering teeth. I also notice that I have just recently had some spells after eating---along with bloated belly---just miserable.

Oh well---what's a person to do-----------maybe dream of better days to come.

You will find a lot of supportive people on this forum-----and many questions will be answered. It's a place you can go when times get tough----and it's a place you can go to offer your support when times get tough for others. The people on this web site will know exactly how you feel---we have been there and back a few times.

We are warriors who will beat this.....................

Julie :0)