MommytoSJEA

This is my main problem so I feel you, I really do. I know I have IST along with POTS. My resting HR is generally around 115-120. Just from me sitting up typing its racing a bit. If I stand it goes to about 130, if I stand and talk, 140, god forbid I move.....150+ Its like this all day everyday. Meds have never been able to bring it down. Its been this way for 7 yrs. UNforutnatly, I have had 2 ablasions, and a sinus node modification. Obviously, did not help. I have learned to "live with it". Im tired all the time from my body thinking its running marathons (as the cardio put it). I work full time b/c I do not have a choice financially. I am up moving around standing and walking the whole time Im on shift. ( I work at a local Blockbuster being Asst. Store Manager) Thankfully, being manager means I can sit whenever I need to, But I cant spend the whole time on my rear. I am usually crusing along at 160-170, in a dizzy as heck haze the entire time Im at work. NO FUN THERE. WHen Im at home, I try to do as little as possible. I take naps before the kids get home from school, especially on the days I have to work at night. Unfortunatly I have not found anything to help slow the HR down. I have been asking for a complete sinus node ablation so they would put in a pacer for over 2 yrs now, but they said it would be unwise. I dont have any answers for you Im sorry. I can just tell you that I am so in that same postion day in and day out. If you find an answer let me know ~Kelli

My GYN told me this once too. I used to be prone to them, and she said stay away from hubby until treatment was done b/c he could pass it back to me. Hope you feel better! ~Kelli

My cardio openly told me he basically knew jack squat about POTS and to go to this web site. And that the people here could help me more then he could. And you all have ~Kelli

I have never had one. My Cardio told me to never touch them. But I also have IST in addition to POTS and my HR is just so darn sensitive to any stimuli ~Kelli

Yes Coricidine is over the counter....at least it is here. ~Kelli

YUp....I dont get sick only if Im the driver. And forget the backseat! ~Kelli

My cardio told me that if I had to I could take the Coricidine products. They are made for BP patients. Mostly patients with high BP, but he said the ingredients that make it safe for them would make it safe for me too. The downside to them is that they are much more $ then reg OTC meds. For me though they do work. Dont make me feel too bad. ~Kelli

Strawberry Lemonade Powerade is my only drink. I buy that crap like its going out of style. The people in my local grocery store know I need like cases of the darn stuff to buy. Its also almost always on sale 10 for $10 which is great!! ~Kelli

The first time I saw these was for an ad for Curves (I dont know how nationwide they are, but its a workout place for women) They even sell them in the Avon catalouges here. I have had my eye on the sketchers ones for awhile now. I only buy sketchers sneakers and Im due for a new pair (i wear them til them are falling apart...lol) and have been thinking about getting the rocker bottom ones. Hmmmm.....just maybe I will. I stand for like 6 hr at a time at work. I constantly have to sit down b/c I feel like crap. Kellli

I had SVT and I had to have it ablated. I know ablation is not in the best interest for most people with POTS though. My ablation did stop the SVT though since meds wouldnt do it. I was also not dx with POTS at the time. Not sure what to do about it, but I do understand what a terrible feeling it is to just have your heart "flip the switch" and be pounding out of nowhere for no good reason. Its scary! ((((HUGS)))) ~Kelli

Welcome! Now its official. Its not all in your head...yay!!!!!!!!!!!! Now the real fun starts. Hopefully you will be able to find some meds that help you feel your best nice and quick! Kelli

I know right???? I hate the side effects to the meds. Half the time I dont know what makes me feel worse. The POTS symptoms, or the dang side effects. ~Kelli

Thanks everyone. Just kinda wondering ya know. Im so sick of med trial and error. I will be taking the florinef too to help keep the BP up. Kelli

I got the scalp tingles too. Not unpleasent, just a very odd feeling. And yeah...I too would look "cold" If I had a thin shirt on My biggest problem that actually caused me to have to go off the med was the nausea. Mine got so bad that I had that feeling in the back of my throat...you know...the one that says dont open your mouth you are going to vomit right now. I was in a constant state of that, and I just couldnt do it. But the doc says that that was very uncommon for that level of nausea. The med worked though, I mean it helped. I just couldnt take it. Make sure you don't take it before bed, I believe its along the lines of 4 hrs before you plan on laying down. It could raise you BP to unsafe levels ~Kelli

So i went to see a new dr today and she started me on Atenolol in addition to the floirnef. She seems to think if we could just lower my heart rate to something more acceptable I will feel tons better. My at rest HR is generally over 100bpm. Very rarely do I go under that. My biggest complaint is my HR. SO she feels this will help. I have been on BB's before, and they have not worked. Just made me yucky sick with side effects. Im suppoed to take 25mg once a day for 3 days and then bump it to 2xs a day. SHe said if its not making HR go under 100 yet bump it some more every couple of days until I reach 2 pills 2xs a day. Anyone else take this or have taken this? What did you think? And what kind of side effects did you get if any? I read that unusal dreams were a possible side effect....lol ~Kelli

Well now you know and knowing is half the battle Sorry the test went crappy (or should I way well???) I dont tolerate meds well either. Hope they work for you though. I keep hopeing for the right combination to just click and feel better. ~Kelli

Good question! My EP told me to get one and I looked them up online last week, and there were just so many I didnt know what to choose. And the chest straps looks so uncomfortable, but I dont want to have to stop what Im doing to put my fingers on the watch plates or something goofy that I read. Kinda defeats the purpose I think. ~Kelli

My hair falls out like crazy. I know the ave person looses a certain amount per day, but I mean when I run the brush thourgh my hair, whole clumps come out. I have super super thick hair, so its not like you can really tell the differnece. Its still just a pain in the rear. One of my fave things to do is have my hubby play with my hair as im falling asleep, and so much hair comes out! ~Kelli

I can relate. But, you really do need to treat the infections. I am really sensitive to meds too. I hate taking a new med, I get so many side effects. BUt I also know that I need to take them to feel better even though in reality the side effects make me feel worse. Its a cost/benefit ratio. If your doc thinks you need to take these meds....then you should. I agree with what others have said, get in and see a psych. It will help so much in the long run to have someone to talk to to help you overcome this. They will be unbiased and listen to your fears and help you through them. Hugs to you ~Kelli

I drink it instead of water becasue I HATE water. I know wierd, but water actually makes me vomit. Generally within a few minutes of drinking it I'm very naseasous. Yick! So i just drink the Powerade instead. Kelli

The specialist I saw at Cleveland Clinic told me to add 5g more then I normally would have. I had no clue what the typical daily allowance was for sodium so I looked it up and it said 1400mg-2000mg. I know 5g is 5000mg, So between 6400-7000mg I guess. I dont rellay pay any attention, even though I know I should. Now I'm sure its different for everyone, but thats just what the doc said. And it was on a hand out she gave me too. ~Kelli

I used Reglan for while while PG! When I found out all the side offects, I was terrified. I took it everyday for about 6 months before eating, and while I did not get any of the harmful side effects that can happen, the drug did nothing for me. I really would talk to hs doc and see about getting something else. He should listen to you if you tell him that as a parent you just are nor comfertable giving him that drug. Good Luck ~Kelli

huh! I have always answered with Nope...no ankle swelling, but until today have always wondered at night when I take off my socks...why I have sock imprint. How bout that. Learn something new everyday!

My 8 yr old son has Crohn's Disease, and instead of the typical presentation of severe diahrrea, he has extreme constipation, and Im talking he once went almost 3 wks without a BM. He has been impacted to the point of needing laxative dumped straight down an NG tube to clean him out. My poor guy. It was common for him to go close to a wk with no BM. And we have to be very careful what we give him b/c of all the disease in there. He takes 1/2 cap of miralax twice a day....once in the AM and once in the PM. We also added Benefiber to it twice a day. It helps him a lot. His GI has also given him Kristalose (sp?) and thats supposed to help a lot too, but he has not taken that yet. The only time he gets the extreme exsplosive reaction is when he needs milk of mag...YUCK! Other then that just taking the miralax and benefiber helps him to stay regular. He doesnt always go everyday, but they are not painful BMs either. Now granted he does not have any antonomic issues, but I thought I would share a gentle way to "regulate". Hope it helps. Its no fun when you cant go ~Kelli

Thanks everyone for replying. It sounds like if I do work up the guts to go get some I will be getting the open toed ones. I hate to even wear socks so Im thinking they may bother me. ~Kelli