P.O.T.S anyone have this?

Discussion in 'Fibromyalgia Main Forum' started by chloeuk, Mar 28, 2006.

  1. chloeuk

    chloeuk New Member

    I know it sounds weird and because I have no short term memory I cant remember what it stands for...anyway I have been having problems with my HR during this flare and it was making me feel dizzy,breathless,chest pain and the feeling of constant heart beating loudly.

    My resting heart rate is 100 when at rest and I only found out yesterday that when I stand up my heart rate goes right up to 140 or sometimes higher...then I was told that when that happens the blood pools in your legs so that is why it goes up so much b/c your heart has to work so much harder to get blood around the body, it is also associated with low blood pressure which I have.

    Apparently from what I have read it is quite common with cfs and when I was thinking about it I thought wow this makes sense this is the cause of some of my symptoms...I always thought that if your heart rate was as high as mine surely it would make you tired etc...and the brain fog, if the brain isnt getting enough blood then can cause memory loss etc.

    I have an apt with a cardiologist next week and I am hoping that he can confirm that I have it and then work on fixing it, it feels great( I know that sounds weird) to know what it is and that it can be fixed/controlled and that may help with cfs...also I dont know about anyone else but I always feel like a fake, like people cant see anything wrong so therefore you are lying...they never come out and say it, but you know....and it is much easier to explain that cfs, psoratic arthritis lupus and all the other things I have either had or been tested for.

    So has anyone been dx with POTS and if so how and what treatment have you had and has it helped?
  2. Thistledown

    Thistledown New Member

    I have BP problems when I stand up and I have dizzy pounding spells where I actually lose my hearing because the blood drains so fast. I looked it up once when I was diagnosed with orthostatic hypotension. Not pleasant, but my resting HR is about 55 and it goes up into the 100's. Not cool.
    [This Message was Edited on 03/29/2006]
  3. Kimelia

    Kimelia New Member

    I have neurally mediated hypotension too, which is the same as that orthostatic word you used. I noticed at the gym sometimes i take my heart rate and it's in the 100's when all i did was move from one machine to the other to talk to someone while THEY workout... hah
  4. mrstyedawg

    mrstyedawg Member

    I was diagnosed with this in 98. It is a very hard illness to treat. I know that I cannot take hot baths, have to drink plenty of liquids, and increase in salt. My doctor put me on Midodrine to help elevate and stabalize my blood pressure. It has really helped. There is also Florinef, but that did not work for me.

    I went to a cardiologist for my heart syptoms, all he did was check my heart out really good and said that my problems were not caused from my heart. He did not diagnose the P.O.T.S I hope that your cardiologist is familiar with this disease. It took me going to 10 different doctors over the course of 14 years before I finally went to John Hopkins. This is where I was finally diagnosed. One of the neurologist I saw said that this is caused from an Autonomic Nervous System Dysfunction. One of the doctors done some kind of test on my neck and told me that I was not getting enough blood into my brain. But they do not really know what causes this. It is trial and error. I have always thought that CFS was really an autonmic dysfunction. I have had at least six doctors over the past six years tell me that this is what is going on.
    Good luck,
    Andrea
  5. chloeuk

    chloeuk New Member

    Angela...sounds like you had an awful experience with this...the only reason I started looking into it was b/c I went to see a rheumatologist last week and he was a really horrible dr, my husband was oversees and I came out of the apt in tears...he called the dr and discussed what he thought was wrong with me.

    He had listed my tachycardia and dizzy spells etc, so he took my blood pressure, then laid me completely flat and did it, then sat up and then finally standing...I thought it was a bit weird he didnt explain to me why or what he was doing..he told my husband that the virus I have had has affected my cradiac function and that I should see a cardiologist..so I started doing some research at home, have a pulse moniter and so I sat down and took my hr and then stood up, as I am sure you know you have to be stood for 10 mins and if your hr stays at plus 20 beats for that time then pots is the answer and with the other sxs it should be easy to dx...I will print out the info I have read and it seems it is more common in women and even more common with with women who have cfs...first indicator is low blood pressure.

    thanks for your reply to be for warned is the best so I will go ready for him not knowing and hopefully get some help.

    Chloe
  6. vickiw

    vickiw Member

    I have it too. It stands for Postural Orthostatic Tachycardia Syndrome. It refers only to heart rate. Neurally mediated hypotension / orthostatic hypotension are not the same thing as they have to do with blood pressure. I have only POTS, but not neurally mediated hypotension. Even though my BP tends to be on the low side, it doesn't drop when I stand - just the heart rate goes up.

    I've been on Inderal for about 3 months and it's helped. I don't have a bad case of POTS and 60 mg/day of the Inderal keeps it under control...so far.

    It's nice not to have the heart racing and no more dizziness, but the CFS hasn't improved at all. Sigh...
  7. sop28

    sop28 New Member

    I was just recently dx with cfs and haven't done much research. I'm a nurse and have never heard of P.O.T.S. I get dizzy, have palpitations, etc.. Recently it has been pretty bad. I just tried to see what the difference is in my HR sitting and standing but I counldn't stand up for ten minutes because I got so dizzy; my lower legs and feet started to tingle. HR sitting was 84, standing(right after standing) was 112. The other day I had an episode were I got dizzy, my ears "plugged" up, I couldn't hear right and I had intense ringing in my ears. Does this sound like it could be POTS? I can't tell you how happy I am to have a name to put to this horrible problem!

    Thankx a bunch,
    Tammy
  8. suz9601

    suz9601 Member

    I used to have my heart rate get up to 195 before I was put on a beta blocker. It stills gets pretty high but not as bad as before the beta blocker. It is one of my worst symtoms of this illness. I think it is from the autonomic dysfunction
  9. chloeuk

    chloeuk New Member

    Glad to be of help to anyone...I even called my mum in the uk to get hers done because its hereidary from mother to daughter. I have been prescribed stemistil for dizziness and that has helped..I am seeing a cardiologist next week so will let you know how it goes. I havent got a bp machine so dont know if bp goes down or up but top part of bp is hr so I know that part goes up..i may be wrong but I think the main problem is that the bp reading at the bottom drops and that causes dizziness etc I think. There is alot of info out there and lots stating links to cfs.

    Chloe
  10. Thistledown

    Thistledown New Member

    I probably didn't explain well. I have had problems with my blood pressure, bu I also have trouble with tachycardia upon standing,dizziness and hearing that pulses with my heartbeat. When I first stand uo, my BP and heart rate both drop (Orthostatic hypotension), then my heart rate soars into the 130's. (POTS)
  11. elastigirl

    elastigirl New Member

    ... but I don't want to have to self-diagnose again :(. I get dizzy spells so bad, sometimes I'd classify them as vertigo (where I literally fall over, but at least this is rare; I stumble a lot.)

    My doctor has seen that my blood pressure can go from soaring to perfectly normal after I've been sitting still for fifteen minutes. Scary stuff. You'd think that would be enough for him to test me for POTS, but it isn't.

    I was thinking that I could buy a blood pressure wrist-cuff myself to try this; maybe after a few examples, my doctor would be convinced. (Or maybe it would prove I don't have it, which would also be good.) However, these devices are quite expensive, so I haven't done it yet.
  12. vickiw

    vickiw Member

    I forgot to take my Inderal yesterday and wow, I didn't realize just how much it was helping! Without it, the "brain fog" is terrible, along with all of the other symptoms. I took it this morning and I'm waiting for it to kick in - it'll be a while because it's time-released.

    For anyone who thinks they may have this, I strongly recommend talking to your doctor about treatment. Be aware of how your doctor checks for it. I had one doctor send the nurse in and she took my pulse lying down, sitting and standing, all within about a minute. It didn't show enough change for them to be concerned.

    The doctor that diagnosed me made sure my resting rate was taken after sitting comfortably for several minutes (he actually has a recliner in his office!). Then he made me stand for a few minutes, taking my pulse two more times. The pulse rate goes up the longer you stand in one place (you shouldn't walk around when testing for POTS because the muscle movement helps push the blood along, changing the results).
  13. chloeuk

    chloeuk New Member

    I have been using our excersise bike which has a pulse moniter, when I have been sat my pulse is around 105, the longer I stand the more it goes up...up as high as 140. I was on inderal for a few days after seeing emergency dr, I was having chest pain and they did an ecg and my resting hr was just over 100 laying down, I was however ill in other ways, and the inderal made my chest weasy so he told me to stop taking it.

    The stemitil helps with the dizziness but the heart palpitations continue...and after a couple of days where I was beginning to feel well( no pain in joints or muscles) I have developed a sore throat again with swollen glands and woke up feeling like I did 8 weeks ago when this all started, i would have gladly spent the whole day in bed but I was booked into the hairdresser, part of my plan to be well again(lol) and boy was it exhausting, imagine just sitting for hours with foils on could make you feel so drained you could sleep for a week...also when I did get up I felt like I was going to pass out.

    Just waiting for thursday now to see cardiologist and hoping he will help and not just tell me yes you have tachycardia and get used to it b/c I cant...hope that this helps anyone discover that their is a symptom that can be fixed or at least helped with medication...after all if their is no cure for these diseases we have to find some way to deal with the symptoms that become our lives.