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Everything posted by m@t

  1. Thanks pistol. I really do have to adjist everyday, if I take the same amount of meds needed to counteract the exercise on a day when I cant exercise due to work I end up in a world of pain. Seriously I have been learning my reaction to propranolol for 3 years or so and I am in a far better place now than I have been since the start of the journey. The only problem is moving on to tapering up the exercise level and the best way to approach it.
  2. I hear what your saying but I am not increasing without the doctor. My script says up to 160mg a day as required and they are more than happy for me to play with the dose on a daily basis from 0 up to 160mg to find the minimum dose to support a level of activity. Indeed this has been the advice from 2 cardiologists and a neurologist. What they can't tell me is if I should push through and tolerate some degree of symptoms for overall gain. Doing less exercise will not work as the amount I can do in the gym without the drug increase to prevent reaction is fairly trivial.
  3. The problem with Marmite is that even thr manufacturer knows that 50% of people will hate it hence their love it or hate it advertising campains😁 Can't beat a bit of marmite with salted butter on granary toast😁 I have found SIS GoHydro tablets have a good effect which I assume is due to their electrolyte content. I know some triatheletes that use them too.
  4. Having reached a minimal activity base line of 20mg of propranolol a day I decided to undertake some gym based experiments... It would appear I can tolerate an hour (including warm up and down etc) of gym work twice a week if I stick to recumbant bike, rowing machine and some floor work. All these machines are set to very easy levels and my HR doesnt really get much up over 90bpm but to maintain my feeling 'ok' level I have had to increase the propranolol to an average of 60mg per day. I have tried some treadmill work and this did not go well and saw me needing around 120mg of propranolol as well as feeling shockingly bad whilst doong it. Without upping the propranolol I get the following symptoms: Larger increase in HR on standing Overactivated buzzy feeling Need for sleep savagely drops to only a few hours Massively high libido Talk very quickly (possibly a little hypomanic even) Anxious on edge feelings Its pretty unbearable! If I stop and do absolutely nothing for a few days other than sit I can ride this out. As the over activated feeling subsides I then crash into equisite fatigue which is actually an awesome feeling and I get a good 12+ hours sleep. Using the propranolol I can shorten the time taken for this cycle to complete by increasing the dose. Does this ring true with anyone elses experience? I would like to try and find out if the best way forward it to keep pushing the propranolol dose up or tough it out in the hope that my body just gets used to it. No medic I have contacted is interested in helping with an answer to this. The only person I have ever spoken who has felt similar apart from the episodic nature is someone who was hyperthyroid. Mine was 'fine' when the TSH was checked a few years back but I do wonder if there may be some post exertion link. I have also had a high dopamine level which seems to give the same symptoms.
  5. Evening chaps. Anyone else take propranolol and had a colesterol test? My results were: LDL 2.6mmol/l HDL 1.03mmol/l Total 4.2mmol/l Triglycerides 1.25mmol/l I have seen that HDL can be lowered by propranolol and mine is right at the bottom of the reference range which is sub optimal. Anyone else got some results to compare against?
  6. Adrenal fatigue isn't recognised as a condition by the medical community is it?
  7. How old are you and are you male or female? Assuming your phone is Android or Iphone you should be able to download a free heart rate app which uses the phones camera to measure your HR.
  8. PoTS is a type of dysautonomia, its not the only type thats why you may find a bit more stuff reading around here. You could probably do a HR measurement without any equipment... Lie down for 10 mins or so and then count the number of beats in 30 seconds and double it. Then stand up and stand still and after a few minutes count the number of beats for 30 seconds and then double the number again. This will give you a supine and standing heart rate in bpm. A rise of more than 30bpm or so is suggestive of POTS. Do you notice any strange flushing / difference pupil sizes between the sides?
  9. Have you done a poor mans tilt table test to see what happens to your heart rate when you change position from laying or sitting to standing?
  10. Hey Emily. Have you seen the potsuk.org site? I think they are quite active on Facebook etc. There is also the rather fantastic York Cardiology (Dr Sanjay Gupta) who has a youtube channel with some pots info and runs clinics. He seems to "get it" and also understands the importance of a good Dr patient relationship. Awareness is spreading and there was a brief mention on "Casualty" admittedly it was related to EDS but it was still a mention
  11. Any of you chaps tried beta blockers or increased beta blockers after over exertion?
  12. If propranolol is doing the job bar the side effects I have had success in doing daily adjustment of the dose depending on how over activated things feel. Somedays I only "need" 20mg but others its 160mg. Since doing this I have lost around 5kg without trying and I'm noticably less tired. I think the best dose for me seems to be the absolute minimum that will prevent an unreasonable upright heart rate.
  13. Not sure many of you chaps have seen the videos from Dr Sanja Gupta of York Cardiology on youtube bit I thoight I would post up a link as I think theybare pretty good. Heres the link: https://www.youtube.com/user/YorkCardiology He has done a series on how sleep affects POTS and has now moved on to brain fog.
  14. Thats great news. How are you doing now? I'd be interested to hear an example of your daily diet incase I can copy it!
  15. Are you taking the HR readings from an automatic BP machine? If so next time it gives you a 199 reading also take her pulse manually and check that its reading accurately. When you say she is non compliant with a 10 minute test do you mean she passes out or feels as though she is going to?
  16. Hey. I have POTS but still manage to run a busy deparment and look after a team of people. Sure I can feel dicey from time to time but I know it wont kill me. Symptoms fluctuate and you can get both good and bad times. I just have to cut back on physical activity which is my main beef.
  17. Not sure if it helps but heres a log of my BP and HR on going from laying flat to standing and then standing still and going back to laying down: mm:ss sys/dia HR 00:00 Horizontal 00:47 144/98 @ 61 01:43 133/98 @ 63 02:46 140/86 @ 62 03:00 Stand 03:47 134/101 @ 127 04:41 124/101 @ 116 05:23 118/104 @ 117 06:01 124/105 @ 125 06:43 129/111 @ 130 07:28 129/115 @ 134 08:10 130/104 @ 128 09:29 123/109 @ 136 09:32 Horizontal 10:34 156/95 @ 59 11:23 141/93 @ 65 If you can walk for an hour and feel ok that day and for the few days after then definitely keep doing that. When you do a flat to stand test have you tried standing still for 10 mins and seeing what your HR is then? I noticed in your vids after an initial spike things went back to around your base line +20bpm? How much fluid are you taking on?
  18. Thats a commute and a half, I take ot you do one of his online consults rather than jumping on a plane? That pesky anxiety label is a difficult thing for doctors to look past once they have given it to you.
  19. Fantastic. Id say you are extremely lucky to have someone knowledgable, not that I actually know what is top of his list of things to try... I take a small dose of beta blockers which does seem to help a bit. Do let us know what he has planned.
  20. Ah thats really interesting, thats an on the ball cardiologist. I had noticed my symptoms when I wore a heart rate band but never thought much of it. Do you do much exercise at the moment? Mine definitely worsens after that. Have a look at the videos by York Cardiology on youtube. I like his pivot point analogy, it describes it for me perfectly. I think the anxiety goes along with having a bit of an overactive nervous system. People tend to think of mental health and physical health as two distinct things but there is really a blur in the middle which is where some of these symptoms sit.
  21. I was similar to you. I had the positional heart rate variability for years but was doing loads of exercise and had no ill effects from it. Then "something" changed and I started to become unwell. Thats not to say you will have the same. Out of interest what made you search out this forum and bow did you come to notice the elevated HR on standing You dont have to have a drop in BP to have POTS, in the hyperadrenergic form you can see a rise in BP.
  22. Interesting posts. My symptoms started with a series of migraines in 2014. I only ever get the visual aura and never any pain with it. I still get the odd one now where I sit there for an hour unable to see anything. I have often wondered if there was something structural that caused a change but wasnt picked up on the MRI or MRA. Kind of the only reason I can think of going from an atheletic life style to struggling to walk around the garden in a short period of time.
  23. Sadly the same as you! I am thinking of experimenting with adjusting the propranolol dose on a day by day basis depending on symptoms rather than a flat dose. How much are you on at the mo? Whats your resting HR? Lets hope your flare up isnt too bad.
  24. Ah yeah thats familiar. I thought I was suffering from over training syndrome at the time as my performance had taken a dip.
  25. I was similar and able to do 5k runs, cross country cycling for a number of hours each week for a long time. Sure my heart rate raised on standing by 70bpm and Id feel a bit dizzy from time to time but it didn't really worry me too much. My resting HR was down in the 40s so a rise of 70 only took me to 110 but I was used to sitting at an average 155bpm for 3 hours when riding so 110 felt like nothing. Then I think my body ran out of things to throw at it over the course of a few months and it wasnt actually the heart rate rise symptoms that took me to the docs. It was the other symptoms of wacky stuff going on with my pupils and suddenly being totally exhausted from mowing the lawn.
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