High Heart Rate (POTS)

55/365 heart rate monitor my normalThe idea of Pacing By Numbers is an interesting concept but a little controversial as some health professionals think it’s a bit obsessive. To those trying it they find it a way to quantify when and how much effort to use and it gives a clear signal when to stop.

Basically you wear one of those heart rate monitors used by people at the gym and try to keep your heart rate below your AT (anaerobic threshold) which is when you start to use energy you don’t have. For me using the calculation that’s 106.

Having bought my HR monitor I started to wear it to observe what my heart was doing when I was resting, sitting using the laptop, getting up to the loo, preparing lunch or a cup of tea, going up stairs and so on.  I discovered my average sitting around doing things like watching telly was between 97 on a good day and 108 on a bad day.  When I got up to do things, gentle things like make a cup of tea, it was up to 130-140. That’s higher than most people get when they work out. My maximum heart rate is supposed to be 160.

When I went on high doses of tramadol and high strength co-codamol it was even higher and at one point walking from the car up a few steps to my brother’s front door my heart rate hit 162 at which point I stopped looking at the monitor in an attempt to relax as much as possible!

Having done some research about POTS (Postural Orthostatic Tachycardia Syndrome) especially in M.E. I made an appointment to see my Lovely GP to discuss whether it could amitriptyline causing it or whether we might be looking at a POTS diagnosis.

I saw my Lovely GP today and she says it’s very very unlikely the highHR is due to amitriptyline as the dose is so small.

She hadn’t heard of POTS but I had printed 3 articles, a testing sheet (with CD copy) and a list of specialists for her. She was very interested to learn a little about POTS and keen to read up.

Happy World Heart Day!

By Robinn on Flickr

I’m going back on the 17th May at the end of her surgery to do proper POTS testing so we have lots of time.

She took my pulse sitting which I guessed right was 104 (she was impressed I could guess my heart rate but I didn’t tell her I’ve been wearing that heart monitor a lot!). Then I stood for like 30 seconds and she took it and it was 116. Not a POTS test but enough to both satisfy and equally fuel her interest. She said 97-104 as my average sitting rate isn’t totally surprising as I’m technically unfit from the sedentary ME thing but when I told her if I lie down and do deep relaxtion it doesn’t change she was a bit surprised and intrigued. I have an effective deep relaxation track which almost sends me to sleep and it lasts 30 minutes but even with that lying down my heart rate doesn’t seem to dip below the low 90’s.

I’m booked in for an ECG tomorrow morning with the practice sister to rule out heart problems.

My GP says since the NHS funding cuts and being in the new world the system is all very confusing again and it seems very difficult to do the “Book and Choose” of before where you could pick any specialist you wanted. So seeing an out of area specialist may now require an application for special funding or perhaps referral to local cardiologist then on to POTS specialist. Seeing as how most docs don’t know about POTS that seems like a long shot to me.

Atenelol

By deartistzwei on Flickr

But I did tell her that I have friends online with POTS who are being treated by their GP using beta-blockers (Propanolol being the one of choice for POTS and ME) so we could maybe do without a specilaist referral.

Am stupidly excited at the prospect of trying Propanolol as I think my high HR is responsible for a lot of my “stamina” issues – why I can only stand for a few minutes or walk very short distances. I’m excited about Propanolol because I know a lot of people in the ME/CFS pacing with HR monitor Facebook group have had good success with it but not with other beta blockers.

She does have a good article on POTS (from John Hopkins CFS clinic) which lists drug therapy options (including some notes from me! Like how stimulants are not advised by ME experts and the beta-blocker recommended isn’t tolerated well by ME people) so she can do her homework on other options she might think are more appropriate or not.

She was apologetic she couldn’t fit me in next week so I re-assured her my heart has been fast for a long time so it can wait a little longer. And I only have to wait 2 weeks anyway! Suits me well as I have the phsyio specialist next week with my back which is a 45 minutes assessment so that’s my big task for next week.

I’m relieved I don’t need to stop the amitripyline as it is very effective for pain control especially my chronic back pain and migraines.  I have a little seed of doubt as to whether it could be triggering POTS but it is a relatively small dose and as it’s effective if the POTS can be treated successfully then it’s not an issue anyway.

UPDATE 4th May 2011: Had my ECG today which was fun thanks to a lovely Sister even if my heart rate was a bit scarey! Hitting 129bpm just sitting down I think due to getting up early, washing, dressing and walking from the car to the consulting room. She tried to do it standing up but the signal kept cutting out so she took one sitting and one lying down. When I lay down it went from 129bpm to 108bpm but then climbed again. Not a good indication of POTS or not because I never got relaxed enough and was recovery from moving around. But definately showing my fast heart rate in action! I guess I’ll find out if there’s any underlying cause from the ECG when I see my doc again in 2 weeks.

Meanhwile I’ve been told by a ME friend that just a 10mg dose of amitriptyline was enough to take her resting heart rate from an average 70-80bpm pre-amitriptyline to 100bpm on the tablets.  So I think when I see the doc our first line of action should be to withdraw the amitriptyline to see what effect that has.  Unless she thinks we should treat it anyway as amitriptyline has been so effective for pain and migraines for me. Plus there are other tricyclics with less side effects I could try (which are more expensive) which is something else to throw into the mix. Doxepin and Trimipramine being my shortlisted favourites to try (in that order). Doxepin is good for migraines, chronic pain and IBS and eczema as a bonus and it’s more sedating so could help more with quality sleep.

I’ll have to see what the Lovely GP thinks!

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9 Responses to “High Heart Rate (POTS)”


  1. 1 Maggie May 3, 2011 at 11:56 am

    Hi Rachel, how lovely to have such a supportive GP! 🙂 Though can’t complain about my GPs (other than the difficulty of actually managing to get an appointment which is convoluted and difficult) as they have been very helpful with getting me referral to neurologist when I started having vertigo (apparently I have a “mild” vestibular dysfunction, but it doesn’t feel mild when I’m nearly falling down the stairs or falling flat on my face when out! 😉 ) and also after my parents’ deaths when I had chest pain they got me to a heart bod quite fast. We decided not to pursue the stress test as I couldn’t have done the exercise one and the alternative is somewhat invasive. “Wait and watch”. I’m pretty sure now that it was a mix of worry and grief – basically psychosomatic, but obviously it needed checking out. It’s good to know that there are other ME friendly GPs around. 🙂

    • 2 rachelcreative May 3, 2011 at 2:22 pm

      Oh it certainly helps a great deal to have a helpful and supportive GP! It took me over a year to find this one just in my own practice (like half a dzoen doctors) and she was the one who finally diagnosed me with ME while the others fobbed me off.

      I know it’s not just about ME. My mum had problems getting any doctor to take her palpitations seriously they all said it was stress but she knew it wasn’t that simple. She paid to go private and discovered with simple tests that she has a leaky heart valve and now she has the right medication to control it. But now she has another problem her docs are back to saying “it’s stress” or it’s diet or it’s nothing to worry about. Very frustrating.

  2. 3 Sue Jackson May 3, 2011 at 1:27 pm

    How wonderful that you got in to see your doctor and she was so interested and understanding, even though she didn’t know about POTS to begin with! That’s great that she’s willing to work with you.

    I just messaged you on FB, but now that I’ve read your full post, it really doesn’t sound like you need full testing – if you met the criteria for POTS after only standing for a few minutes, there’s certainly no need to put you through a longer test (which would only make you crash badly).

    As you probably know from all your reading, everything that you describe is completely normal and expected in someone with ME. Since OI (including both POTS and NMH) occur in over 95% of people with ME, you’re in good company! And you’re right – OI causes many of the symptoms we associate with ME.

    Dr. Rowe, who wrote that article from Johns Hopkins, says there’s really no reason to test officially if you show the symptoms – just try treatment and see if it helps. I spoke to him personally when my son was 8 years old (and couldn’t stand still for long enough for an official test!) and he said just go ahead and treat and see what happens.

    The general agreement among OI in ME experts seems to be to use very small doses of propranolol, as you said, in order to minimize any side effects. As you know, it has helped me immensely!!

    Oh, and any doctor who thinks tracking HR is “obsessive” has obviously never lived with ME and experienced major crashes from normal daily activities!

    Good luck, Rachel – sounds like you’re on the right track!

    Sue

    P.S. While you’re waiting for your next appt, you can try lots of extra salt and fluids on your own. It often helps quite a bit.

    • 4 rachelcreative May 3, 2011 at 2:27 pm

      Thank Sue very useful stuff. Interesting about Dr Rowe saying symptoms are enough. I can do a 10 minute test and show results and just be a bit wobbly afterwards for a day rather than a massive crash (think LDN helps). And it will certainly be of interest to my doc it being her first case/experience of POTS. So I’m relaxed about going back and doing a test in the docs office. Wouldn’t be keen on tilt table though!

      Yes I think docs or physio’s or whoever who think HR montoring for pacing is obsessive don’t really understand either how to use it as a positive tool to do more and what the HR activity for us people is like. If they knew we had heart rate and/or blood pressure oddities then maybe they would be less quick to criticise.

      Anyway they are just a “them” at the moment. I don’t know who “they” actually are! Ha ha.

      And I do pretty well on my fluids and salts though I might pay closer attention.

  3. 5 Maggie May 3, 2011 at 4:24 pm

    About the salt – I’ve been a saltaholic since I was a child – used to dip my finger in it and slurp it up. Oh, and those lovely little blue twists of paper with salt in them in crisps! 😀 I wonder if it’s a case of self medication – body recognises what it needs? And as for chips, just smother them!

    • 6 rachelcreative May 4, 2011 at 10:33 am

      Absolutely what the body needs. I’ve eaten a lot more salt since I’ve had ME. Never was too fond of it before. And it’s like that urge to sit – hadn’t twigged the reason behnd it. Thought it was weak leg muscles but actually a lot more going on that just that!

  4. 7 Dominique May 3, 2011 at 10:18 pm

    Rachel – You’re post was really interesting for me. I tried to get tested at the VA (Veterans Hospital) and they did the 30 second test but nothing. Yet, I went ahead and did the water and salt (at Sue’s suggestion) and have seen a lot of improvement.

    I’m glad you doctor is willing to learn and check. That is soooo important nowdays.

    I’m looking forward to seeing what they find out.

    • 8 rachelcreative May 4, 2011 at 10:32 am

      Oh thanks for that glad it is interesting.

      I did a sort of self POTS test using a cheap but good blood pressure monitor.

      Like this http://www.amazon.com/Omron-Bp710-Automatic-Pressure-Monitor/dp/B002ZHXVWU/

      I relaxed for 10 minutes and took my BP and pulse with the monitor. Then I stood up with the monitor still attached and stood still for 10 minutes. It’s important not to talk or move around. Then I redid the monitor test every 3 minutes.

      When I was sitting my pulse was 99. After 3 minutes standing still it was 120 going to 126 after 10 minutes. When I sat back down again it went to 89 after 3 minutes and I was lightheaded, with a headache and spots before my eyes with a bit of blurry vision.

      I am lucky I don’t collapse or crash really badly after such an exercise (I think the LDN has helped a lot in that respect). But I am really low energy reserves for a day or so afterwards and my heart spikes even more on standing and moving around even gently after such a test.

      Then I bought a heart rate monitor like they use in gyms and observed what my heart rate was like doing simple gentle things and discivered my heart is really fast! But sitting/lying is fairly consistently in the 90’s or the low 100’s if I am weary/bad day.

      Great to see the salt and fluid loading helping! Something simple and cheap to help.


  1. 1 POTS Negative, Possible Other OI – Postural High Blood Pressure « ChronicallyMe Trackback on June 7, 2011 at 12:58 pm

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