The 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.
- The Postural Tachycardia Syndrome (POTS): Pathophysiology, Diagnosis & Management Satish R Raj, MD MSCI
Autonomic Dysfunction Center, Vanderbilt University, Nashville
- GENERAL INFORMATION BROCHURE ON ORTHOSTATIC INTOLERANCE AND ITS TREATMENT Chronic Fatigue Clinic – Johns Hopkins Children’s Center
- Postural orthostatic tachycardia syndrome is an under-recognized condition in chronic fatigue syndrome ME Research
- POTS An Overview Dysautonomia Information Network
- Postural Tachycardia Syndrome (POTS) STARS (Syncope Trust And Reflex anoxic Seizures)
- ME/CFS – Pacing with a Heart Monitor Facebook Group
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.
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.
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!