m@t

Ah yeah thats familiar. I thought I was suffering from over training syndrome at the time as my performance had taken a dip.

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.

Katcanny, hows things going now?

Hey Bombsh3ll have you looked at seeing Prof Mathias in his private clinic? How did your symptoms start?

I'm exactly the same and it correlated well with the start of propranolol. In some ways its almost like the heavier I am the better I feel dysautonomia wise. Strangely dieting seems to make symptoms flare up. It will be good to hear how you get on.

I have no trace of a UTI etc. Its extremely unlikely to mean anything but I think my GP just wanted to be sure as to use their words its "not normal in men".

Hi. Mainly its the pounding heart due to a marked increase in pulse pressure, different sized pupils, increase in heart rate on standing and fatigue.

Evening chaps, recently I have found that when my autonomic symptoms are bad if I have my urine dipped it comes back showing that some blood is present although not visible. My GP has refered me to urology for further investigation, juat waiting for the appointment to come through. Has anyone else had similar? I am assuming that it will turn out to be absolutely nothing.

I tend to use propranolol directly after exercise to kill the prolonged elevated heart rate and insomnia. Do any of you use betablockers in this way too?

I'm the same age and slightly further east in Hampshire. I am lucky that I can hold down a full time job as I dont have things as bad as most but still know your pain...

Wilson, I'm in the UK too and it has been a complete nightmare. The worst experience I had was at a non local hospital with a non english speaking doctor who attempted to write a letter that was so factually incorrect it was laughable. She was truely poison and the only way I would go anywhere near that terrible grotty place again is if I was dragged there. I was lucky that I saw a local neuro and cardiologist pretty quickly after symptoms started and they were smart enough to twig I had some degree of autonomic dysfunction mainly due to my pupils being different sizes when I felt bad, mad heart rate jumps and BP variation. Admittedly I did have to pay to do this as my GP was fixated on anxiety and my refusal to take SSRIs really enraged them. They still arent fully on board with what the consultants say but I'm not really bothered as I give their opinion absolutely no weight at all, they are more focused on the 10 minute target and getting you out the door than anything else. I think the odds are stacked even more against men with the condition as it has been seen as something women get. Not sure geographically where in the UK you are but I know there are some good medics out there its just finding them. I'm in the south central area. The NHS is pretty worthless for this kind of condition, great if you need a heart bypass or broken bones fixed, but useless at stuff like this. ME/CFS is something I wouldnt want anywhere near my notes as from what I can make out the majority of people in the NHS class that as a psych disorder and a dustbin diagnosis that means they then no longer have to try and improve your quality of life. As you can probably tell I am extremely angry and bitter about my experience and if I hadn't of paid to see the local cardio and neuro as @jojo79 did I would have been left to rot.

I assume quite a number of you chaps have also had 24 hour urine collections looking for a pheo or carcinoid etc. I completed one a year ago and am doing another one now and I wonder if my urine is actually quite dark given the volume! This is about 3.75 litres just after finishing. Does the look about right? I would assume I was dehydrated if it wasnt for the amount of water I had drunk.

Last september there was an article on POTS in the magazine for UK GPs which is called Pulse. Its available online to look at here: https://view.joomag.com/pulse-september-2016-issue/0467704001472816532?short It starts on page 78 and may prove useful if you have a non believer of a GP who thinks everything is a bit made up.

Evening chaps. I recently decided to see if citalopram would help out with the hyper pots symptoms and maybe improve my exertion tolerance. I guess my mood had dipped a smidge too so I wondered if it would help. I'm about 10 days in and it has ruined my sleep, I feel terribly anxious all of the time and I spend the first couple of hours every day led on the bathroom floor vomitting. I have mixed feelings about pushing on, Im on 10mg and wondering if things will get better with time or if I should just go back to the propranolol on its own! Anyone using it to great effect or have any stories to tell about their experiences with it?

I was fairly fit before I had all this nasty dysautonomia stuff start and most of the chaps I cycled with had resting rates in the low 40s its not uncommon. Doc said it was nothing to worry about. Still on propranolol, it barely changed my resting rate but has stopped the massive rise on standing.

Mine averages 50 and sits at around 40 most of the time or down to 29 when asleep. Thats without taking propranolol..l Heres the blurb from my holter monitor report for a lazy day... I was still prescribed propranolol and have positive effects from it....

No real purpose to this thread really other than to vent how I am feeling at the moment.... Its been getting warmer recently up to a warm for the UK 30 degrees C and I have had to do some slightly more physical tasks at work as we are moving offices. Gradually I have noticed that I have been sliding down hill. For a while 20 to 60mg a day of propranolol seemed to snub out a fair amount of my POTS and other autonomic symptoms. However it doesnt seem to be touching it at the moment. I am going from 48bpm lying down to up to 100bpm standing, my pupils are different sizes, chest pain, feeling a bit edgy / anxious / wired and my vision is off, to top it off I also feel very irritable and have no patience with people. I think the latter is related to just feeling terrible. I hate the feeling of being wired and edgey and no one seems to understand when I say that it is caused by over exertion and goes away with rest! I know if I spend a week completely led still with minimal stimulation I will feel a lot better but there is so much that I want to do. I'm at a point where I am thinking I may as well keep pushing and pushing and doing things I enjoy regardless of how bad it makes me feel, however I know this will end up in the ED and complete rest for a month or more which is torture. I have tried gradually increasing exercise but it has had no positive effects at all. Little over 3 years ago I was doing 20 minute 5km runs and 3 hr 30 mile cross country bike rides a few times a week. I still cant understand how I can go from this to not being able to do anything in a number of weeks with no explaination. Team medicine have basically done an MRI of my pelvis, abdomen, chest, neck and head and a couple of blood and urine tests and given me propranolol and told me to go away and deal with it which isn't helping a sense of despair! I have had some dodgy results but the medics dont seem too worried... 2 x ref range 3-Methoxytyramine (dopamine metabolite) Over ref range cortisol but supressed with a dexamethesone supression test Over ref range 5HIAA 25mmhg difference in systolic BP between left and right arms when symptomatic Different sized pupils when symptomatic A sharp increase in libido when symptomatic (its so strange feeling terrible but wanting sex at the same time) 40 to 50bpm rise of HR with no drop in BP from sitting to standing. Passing 4 litres of darkish urine a day and still feeling dehydrated Gout Over reference range ferretin My main GP problem is that there is no "read code" on their computer system for dysautonomia so they dont beleive it exists. I have been considering trying an SSRI such as citalopram just to see if it has any effect on things. Any views on this? I have also wondered about MTHFR mutation and homocystiene and whether to get checked for that. Appologies for the rambling waffle! Matt

Thanks Sarah. I was aware of potsuk but I was just trying to cover all bases with a post on here too!

Knowing whats an isolating pain in the bum the constellation of dysautonomia symptoms can be I wondered if there was anyone else on here who was fairly local who would be happy to meet up / help each other out?

It was a massive thing for me start the propranolol and I really dislike taking them, but I can't really argue with the results. That is a remarkably high heart rate you hit there. I assume you have been worked up with team caridology with a treadmill ECG etc? Do they know if your inner workings extremely sensitive to adrenaline which causes the HR rise on exertion or something else? One other question, say if you are 90bpm sitting at rest and 200bpm fast walking are there any activities you can do that would get you to say 130bpm or is it always a step change beyond that?

Mo as in short for moment... I have been at the point where I could do no exercise so I know your pain. My BP has been up at 180/110 and swung wildly around before starting the propranolol. It now sits at around 135/85 on 40mg, the additonal doses don't seem to affect it. My starting prescrition from my GP was 120mg / day every day but I was suffering from terrible migraines and gout at that dose. I cut back to 40mg and those side effects went away. I should say that I am not the smallest of people at 1.91cm and 100kg which I assume dilutes the dose slightly! As you say, the half life is quite short which is why I assume the additional doses have a positive effect after exercise. Before all of this started my resting heart rate was in the high 30s due to the amount of exercise I was doing, even with the propranolol I'm nowhere near down at that level anymore. What's your response to swimming / recumbant cycling? I assume you wouldn't hit your 200bpm as easily as you wouldn't be upright?

Its not the extended release form, at the moment it may be a maximum of 120mg a day from a usual baseline of 40mg. The 40mg lets me hold down a full time fairly stressful job and do a few bits and pieces in the evening. Ive just got to get some exercise back into my life as I miss it and the social side of it so much! What are your limits at the mo conpared to without Propranolol?

Evening chaps 40mg of Propranolol a day seems to have levelled out the worst of my symptoms so I have been experimenting with a little exercise. I have been doing a small set of 6 mins recumbant bike to warm up, then some weight work for arms followed by legs which in total comes to about 30 mins of work. I definitely feel worse in the hours and days afterwards, with increased HR rise on standing, heart hammering so hard it shakes my shirt, nausea and fatigue but also strangely insomnia. However, I have been experimenting with a post exertional Propranolol dose and seem to be having some good results. I have found that taking an extra 40mg as soon as I finish my session followed by a further 40mg at 6 hours and extra doses the following day if required cuts down the duration of all of the symptoms. This is reducing my recovery time from a number of days to approximately one day at the moment. Has anyone else experimented with this or any other beta blocker and had similar results?

Katy, sorry to hear that. I know that feeling all too well, sending many positive thoughts.

Katybug that is exactly how I have been. In two years I have gone from running and cycling for hours a week to sedentary. Any attempt to get going again regardless of how slow I have started has resulted in this cumulative effect where it just builds up until its intolerable. I am now starting to play with my propranolol dose and am having a degree of success. Normally I take 20mg a day and directly after exercise I am taking an additional 40mg. This certainly seems to have some beneficial effect for me but I guess ill see how it goes. Ill be very interested what your team have to say.