Severe Tachycardia

[tilly]

I know that the tachycardia is the main symptom of pots, but I wonder just how you cope with it all of the time .. I tire of it daily .. meds did not work on it and so I have to keep stopping what I am doing and lay down to get the tachy to stop ...

even when I sit to get washed and dressed the tahcy is still there 150 washing and cleaning my teeth ? 140 putting on my bra, and so on , I get breathless if I don't stop .. it appears that upper body movement also causes tachy! any movement infact !..

I can't sustain it all day and have to keep sitting - lying down, which I have become accustomed to after having it for nearly three years now, day in day out, never had one single day free of it ....

how many of you have to use a wheelchair indoors .?. Does it help ? ? I have to use one to go around a shop .. I have already posted a lot about this on ( Stacie?s wheelchair thread ) .....

but in the morning I am floored by the incessant tachy, constantly every morning, when I wake I think here goes as soon as my feet touch the carpet ....

I know what I am saying is all POTS .. but I still wonder do you all feel the same ? do you use wheelchairs indoors ? Most importantly does it help ? do you all get the tachy even though you are sitting to wash and dress ? ..

I am having one of those days when I feel im the only one ....

[brownsea]

aw tilly

i really feel for you, im on the usual meds, and i still get like this. i cant stand more than a minute or two.

i dont use a wheelchair indoors, i do outdoors though otherwise i wouldnt be able to go out anymore.

i have to sit down and clean my teeth, if i feel out of breath walking around indoors i sit down on the floor. which ive been doing for nearly two years now.

the autonomic function test has detected, vascular sympathetic failure, not sure what that means as i havent been back to see the doc yet, ive got an appointment in may, but being vascular im sure its why im out of breath.

its a real nusiance as i cant do much at all. i dont make meals anymore, can do housework. i only go downstairs two or three times a day. also i cant drive or work.

really know what your going through.

emma.

xxx

[prettyinpink]

Meds and slowly increasing my activity is what's working for me. I use a wheelchair outside of my house because my walking endurance is so little but wheeling a wheelchair with your arms or feet can really increase your heart rate. I found that walking a few feet to a chair, sitting, then walking to the next room with a chair is what helped me the most in my house. Slowly I was able to walk through 2 rooms to a chair etc. I can't wheel myself in a wheelchair on carpet because my heart rate skyrockets.

[prettyinpink]

I think maybe if your doctor can help you understand why your heart rate is so high then maybe you can find a somewhat more effective treatment. I know that we dont know the cause of pots but if for example your heart is so high because your blood pressure is really dropping then maybe compression hose, increasing your salt etc would help.

[Maxine]

I just wanted say my heart goes out to you, as I can't imagine that all day. It's so disabling when I get it sometimes.

Can you talk to your doctor about possibly changing your meds so you can function a little better? I take wellbutrin to help constrict my blood vessels. My POTs is secondary to the EDS which also causes poor vascular tone. I've been having some spells with my heart in the last few weeks, with some flip flops, adrenaline surges, and tachycardia. I take my full dose of klonopin on really bad days, otherwise I normally take half.

Sending a BIG HUG to you.

Maxine :0)

[persephone]

Tilly you need to ask your Doctor about IVABRADINE as it is licensed in the UK now.

It's the world's first beta-blocker style drug that does NOT lower blood pressure.

When I was first given it, y pulse was doing 180 with my sittimng in bed and stretching an arm above my head. Within 2 doses my pjulse was 65!

IT's not without its side effects- what drug is? But it can really work well for severe tachycardia. It's not a first line drug and is quite expensive, but it's good for people like us with low bp so do ask.

[tilly]

Thanks so much everyone for replying to me ... i can not tolerate some days, it the same every single day every time i move ... i get no breaks from it and so reading some of your replys like Emmas ."its a real nuisance cant do anything", no house work .. it is a real nuisance indeed .....

i don't drive anymore because i fear if anything makes me anxious the tachy will be worse 200 plus and i will be on my way to the hospital again ... so i avoid everything that can cause me any anxiety ... i also worry what and how i will cope with an emotional upset say a bereavment, how will the tachy be then ? do any of you have experienc of this ....

i get high BP aswell as LOWs with the tachy it fluctuastes and is as erratic as the tachy ... what do you all think is the worse symptom to put up with ?... mine is definitley the tachycatrdia because it is so disabling ...

persephone, thanks for saying about the iverbradine i think this may be a discussion at my next appointment ... let you know what they say ....

tilly

[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

[icesktr189]

MommytoSJEA

have you tried hydration therapy? my cardiologist said it was a "last resort" but i have heard that it can do wonders. from hearing your experiences a PICC line seems worth it. Not everyone gets infections.. i think my mom has had hers for over a year now.. and she has a back pack so she does not have to sit at home with her fluids all day long

just a suggestion

[Angelika_23]

A beta blocker really helped my severe tachycardia. They tried me on several until they found one that worked. The others actually made my HR worse. Toprol XL is my beta blocker of choice.

Angela

[Griffin]

Tilly, I'd endorse that advice aboout Ivabradine. I am about to go on it soon and am hoping it will help.

[tilly]

Kelli .. i don't know how you manage to work, it must be so hard for you ... I cant seem to sustain activity .. like I said heart rate through the roof before I do anything and I can?t seem to take a full breath in and struggle every day with trying to keep the rate down physically by sitting an laying down .. when i try to ignore it and carry on i get chest pains and them one thing leads to another and before you know it you got go to the hospital ... so it always is a balancing act trying to manage it all of the time ...

I have had no relief from symptoms for three years now since it began .... before this I was a relitivley normal person ... Who had to work hard at the gym to get your heart rate up to 120 aerobic mode fat butning mode .. and was no stranger to exercise and going for long walks ... so having to put up with this has bee very frustrating .. I have had four acute coronary syndromes, been treated for the chest pains .. and wonder if I have some cardiomyopothy now ... I am going to ask for a new echocardiogram when I go for my appointment next month ...

Angela .. I think the bb you mention is it the same as bisopropolol . in the uk ? .. I have tried three different ones and they did nothing . but the bisopropolol sent my heart irregular every other beat keep missing it was very scary for me fast and irregular... but I have not heard anyone else complain of this !.. it must be me that is sensitive to the meds ...

Griffin... I intend on mentioning the iverbradine . unless they mention it first .. I'll have to see at my appointment ....

what I find the most distressing is the constant inability to sustain any activity, how any activity floors you ... my heart seems to think we are in marathon mode, it balmy, surreal, odd, the number of analogies i can come up with are endless ...

what I have been trying to do over the past few months is, build a life with how I am now instead of keep banging my head against the wall ... I have given in to using wheelchairs now, i use them in the shops and I am looking into the options of a power chair in the home to help me over the bad morning .... thanks for all replying i know you are all suffering too ....

tilly