Need Some Advice

[sarahm]

Hi All

I need some opinions on a recent conversation with one of my doctors. I have been having a relapse over the last month. My heart rate and symptoms have just been very erratic. My doctor took a look at my heart rate and bp log. She noticed that my symptoms and heart reate don't always coincide. Some days I will feel ok, but have a high heart rate and some days I will feel bad and have a lower heart rate.

She is saying that because my heart rate and symptoms don't always coincide medication probably won't help me. I am currently on midodrine, but I don't think it is doing anything. But I really want to try a new medication, especially a beta blocker. Her reasoning is that even if they fix the heart rate issues with medication, I won't feel better because often I have symptoms with a low heart rate anyway. This just seems wrong to me. From reading on this forum it seems that most people experience symptoms even at rest.

She is also wondering if my issues are not due to POTS at all. And wants me to redo the autonomic testing. Her reasoning for this is again if the postural change is not causing my symptoms than maybe something else is. She already had me redo an EKG which was perfectly normal. I had a very extensive work up when I first got sick and nothing other than the TTT was abnormal.

I have been especially symptomatic during cardiac rehab. I have to do the warm up standing and that has set off a lot of symptoms lately. But I am also getting symptomatic when I exercise too hard on the rebumbant bike or rower and my heart rate will just start to take off. My doctor said that is not typical POTS behavior. That exercising harder shouldn't make me more symptomtic if I am not standing. Again this just seems wrong to me.

What have your experiences been? Do you have erratic symptoms? Do your symptoms only appear when you are standing? Do your symptoms get worse the higher your heart rate goes? Do you get symptoms during recumbant exercise?

[yogini]

Many of us (most of us?) have erratic symptoms and they definitely don't always coincide with HR and BP. My drs and I had the same thoughts when I was first sick and we thought I might have inner ear or endocrine conditioning addition to or instead of POTS. Turned out to be just plain POTS for me. And medications help me a lot. Is your dr a POTS specialist? Maybe it would be helpful to see someone that specializes in POTS?

[Kellysavedbygrace]

Like you, I can be very symptomatic w/o a correlation of HR and BP changes. (most docs don't get this.)

I too started exercising - first w cardiac rehab and now w an exercise therapist. Ive come a long way (now 5x wk) but still most of my exercise is recumbent and if I do anything upright I have to be either marching/ or running hard- otherwise I get dizzy. Back in March when I started my HR was more erratic, now it is erratic all day long except once I'm 10 mins into my workout- then I'm like a textbook HR. Sometimes during cooldown Ill focus on my HR just for the joy of watching my HR act normally. Of course once I stop all bets are off. Often I can feel the blood draining my head on the way home from workout. So even though my HR is textbook during ex that doesn't match symptoms. I can push through a workout and have tunnel vision the whole time. Lately I've been more symptomatic than the last few MOS and I wonder if it is because I've upped my exercise.

Exercising harder is something to be cautious about. When I push myself I regret it. Many people have exercise intolerance and we are likely to make our conditions worse by overwork. I try to not let my HR go above 150. I keep a close eye on it and slow it down when I get in that range. As far as "normal" for POTS- I don't know of many "normals."

I would stop any standing warm ups/ cool downs. Sit, lie down, ask the cardiac rehab nurses to help you find ways to do it in a recumbent position.

I agree w your doc, bc symptoms don't match HR/BP meds that influence the heart probably won't help- that said, if Midodrine is not working and you've never tried a BB then it makes sense to try it even if just to evaluate it's effectiveness for you. And yes, I definitely experience symptoms at rest- in fact some of the worst are while resting.

Maybe updated testing would be helpful especially ifit has been a while. They might find new information that would help.

[sarahm]

Yogini, yes this Dr is a POTS specialist. However it is not the regular Dr it is his fellow, who has been there for 3 years. I am not sure if my regular Dr agrees with all this, but it is very hard to get an appointment with him so I haven't seen him in a while. They also suspected inner ear issues for me as well early on because I was dizzy all the time. That has since gone away.

Kelly, thanks for the insight and advice. I generally find that during exercise I start getting symptomatic when my heart rate goes over 120. So I usually only push myself to that point. I guess the question is when your heart rate is around 150 is that exercise induced or because of the POTS? I had worked my way up on the rower from 5 Watts to about 12 Watts. All keeping my heart rate under 120. Now I am back to 5 Watts, if I go any harder my heart rate takes off in the POTS way with palpitations and lots of other symptoms. Its hard to describe, but imagine you know what Im talking about.

[leydengs]

Hi sarahm, I work out daily and I've done long distance stuff (marathon/half marathons) and I've done a figure competition and I'm with you I can be sitting or standing and my heart rate can go nuts during a workout. Leg day is the worst, I can't do a lot of lunges or jumping things because my heart rate goes through the roof and I get really dizzy. Sometimes during cardio, if I'm doing stairs for example I'll be doing pretty quick for about a minute and my heart rate it ok but when I slow down for a minute my heart rate will go even higher so I have to just adjust my workouts to what I can do. Sometimes I take more breaks, sometimes I take longer breaks.

I also had the same problem where I can't do medications because they make my other symptoms so much worse.

Good luck!!

[StephL]

Is there any norm to your heart rate at all? Or is it just always all ove the place?

I ask because my heart rate is very blunted. Usually in the 40s, maybe 50s. It doesn't react properly when upon standing or movement. Usually it stays blunted all together or it's tachy for a minute or two and then drops quickly back down into the 40s.

My TTT report specifically said that I should NOT be on BB because it would blunt my pulse even further. Is it possible that your doctor is concerned about that?

[Kellysavedbygrace]

Funny, I can be at 150 walking into the gym. (because of POTS erratic craziness). Get on the recumbent bike, get pumping really hard and my HR will drop into the 120s-130s. When doing cardio I get all sorts of erratic HRs (180-not recordable weird rhythms) up until I'm manually pumpingmy legs and working my cardio in the 120s-140s. And on a good workout day I like to stay in this range between 20-40 mins (not sure ow that translates to watts). My overriding goal is to strengthen my heart muscle and hopeully that will help w overall vascular tone. If I really get going over 150 I quickly tone it down not so much because of palpitations but overall exercise intolerance. That is not to say I'm not symptomatic while exercising. When recumbent I typically don't get more faint and often the blood pumping will help clear my head but anything upright or sitting w legs down is danger for me in the faint category. I often get grey outs/ tunnel vision etc but only when feet are down. I wonder what would happen if you pushed through into the 120s-130s and kept it there for 10-15 mins- would the palpitations go away for you like they do for me?

[looneymom]

I think I might get a second opinion. My son has had two tilt table test. Before the second test he had already been taking midodrine and fludrocortinsone and he still failed the test. He has to be careful doing exercise and it has taken him awhile to build up to 25 minutes of stationary bike riding. If you can afford to see a POTS specialist, that would be great. It would might put your mind at ease. Good luck and hang in there.

[sarahm]

leydengs. I am impressed you are able to do so much. I hope to get there one day. It is kind of nerve wracking to try and work through symptoms, plus the first one I usually get is nausea which just makes me feel miserable. I actually haven't had any issues with the medications, its just that none that Ive tried have worked. And the doctor is basically refusing to try anything new.

Steph, my heart rate is not as erratic as yours. Its just that I was having a very consistent resting and standing hr. Now my standing hr will just take off at times. I think the best example is at cardiac rehab when we do the standing warm ups. Sometimes I get through it fine and other times my heart rate takes off. Where before I didn't have those episodes where it would just take off. It was high, but consistently high and regular day to day.

Kelly, Im glad to here that sometimes workout harder actually lowers your heart rate. I had this theory and asked my doctor about it but she didn't think it would work. But I am going to try it. Thanks for the advice.

Looneymom, I agree it might be time to get a second opinion. Since she is just the fellow I need to talk to her again to find out if the regular doctor agrees with all this. If he does I will probably move on.