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Peter Charlton

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Everything posted by Peter Charlton

  1. Eating makes me so utterly exhausted that I do not eat a thing until my day is over and I can go to bed. Fortunately another symptom I have is that I lost my sense of hunger, I did an experiment a year back, went v42 hours without eating as much as a peanut, still didn't feel hungry.
  2. Similar to the above balance thread that I replied to on the slightly older thread. And I wouldnt have thought I veered more to one side until reading this and so I wonder if I do veer more to the left and my stumbling to the right is to compensate? I actually said to my neurologist it feels as if I am made of metal and there is a giant magnet next to me, on one occasion talking to a neighbour, I had to really lean against the wall as the force pulling me to the other side was so strong. I think its to my left because I now fear walking along the platform of a tube station with the rails on my left and keep to the right, not so much afraid for myself but of suddenly and unexpectedly veering to the left just as somebody is hurrying by and that I might bump them into the rails. Like all my symptoms that the NHS cannot find the reason for, they say I have anxiety, even though I feel totally laid back and when I did see a psychotherapist, she sent me right back saying that I don't have anxiety, they are always doing this".
  3. I just posted my experience with Bisoprolol on this thread here https://www.dinet.org/forums/topic/30812-ventricular-tachycardia/?ct=1575668280&_fromLogin=1 Summing it up, I would say this drug permanent ruined my life.
  4. The day I took them, (very end 2016), I described feeling as if my lungs no longer worked, that I had to remember to breathe, that I felt like a drunk zombie, that I turned into an old man over-night. So I right away cut the minimum dosage tablets in half which was just enough to keep my VT at bay, never-the-less, five weeks later I am found at work slumped against the wall, the nurse couldn't detect a pulse so she gave me oxygen which made me feel ok, the ambulance then turned up to find my pulse to be 40bpm, so I wonder what it was before the oxygen?, I wonder what it was when I was asleep and had nightmares about not being able to breathe in view of the feeling I now had to consciously breathe? So they took me off Bisoprolol around February/March 2017. When in hospital for VT, the monitors alarm was constantly bleeping because my oxygen was so low, I bought my own oxymeter and found my blood oxygen to be around 85% for half the night. (See attached image). I also had a persistent cough. April of 2018 the breathlessness, the cough and the low blood oxygen just all got better just like that, for no reason, my guess is that the Autonomic Nervous System which is what beta blockers unbalance, took a whole year to correct itself. The ANS is what monitors your blood oxygen and gets you to breathe correspondingly without you needing to think about it. I had many other symptoms of a disrupted ANS, early satiety, a heart beat that would be really variable for no reason, complete loss of the feeling of hunger. The feeling my feet and legs where on fire, numbness of my skin. My memory is now rather poor, I drop things, I instantly forget things I have literally just done. Whilst the lung part now is fine, my oxygen levels with the same meter are now in the high 90s, but I still feel like a drunk zombie, especially when tired, my head just feels numb, people think I am drunk because of my gait. My own view is that the beta blockers did some sort of permanent damage to my nervous system because the ANS was regulating my oxygen and so I had a long term measure of oxygen deprivation. I did a DNA test last year, turns out I have genes that make me a slow metaboliser of various drugs, including beta blockers, this means when I take the next days dosage, I still have the previous days inside of me, and so I gradually became overdosed. My cardiolgist initially fobbed me off with the usual "anxiety" claptrap, but he now apologises, especially as he has another patient with exactly the same permanent side effects from Bisoprolol. I had to be medically retired because of it all. Here is a link of a company that makes medical equipment re Dysautonomia, near the bottom they attribute Dysautonomia to beta blockers, yet its very hard to get anybody in the NHS to believe this, they much prefer to get you out of their office with the "anxiety" fob off. http://www.qhrv.com/dtr_ans_overview.htm Here is a link to a discussion on Bisoprolol from others who have been effected. (Though you might have to sign up to read it?), https://patient.info/forums/discuss/beta-blocker-bisoprolol-withdrawal-and-breathlessness-493734
  5. This is the one of the main remaining side effects I have from taking beta blockers for a while three years ago, I notice it is worst when I do not have a visual reference point, standing in the sea and looking down is quite difficult, at work people seeing me walking asked my manager if I was drunk. I also notice that it is worst when it is cold, so wonder if blood viscosity thickens when it is colder? My inquiry though relates to the criteria for having OH. When I was first tested at Queens Square, my blood pressure fell more than 20, but when I went for a tilt table test and also my last visit to a neurologist saw my blood pressure drop by only 17, hence I dont get a diagnosis of OH but a determination to blame my symptoms on my poor childhood of over 50 years ago, the symptoms of which only manifested themselves on the very day I started taking beta blockers. So what happens regarding OH, can your blood pressure drop by 19 points and you are perfectly fine but a drop of a single point more and you fall over? I would have thought it would be more gradual, so that my last measued drop of 17 points might not be serious enough to cause concern, ie I dont feel like I am about to faint, but maybe its enough to exp-lain the drunk zombie un-balanced feeling I get?
  6. I had Ventricular Tachycardia, sustained, (not SVT), sustained as in every day for up to 12 hours. It was cured with an ablation nearly three years ago. I too had the trouble of my episodes never co-inciding with NHS investigations, so I bought my own little ECG, a "Prince 180B". The following print was an exact match to how it looked in the ambulance. Mine started as very occasional single ectopic beats, that became more common over the course of a few years as they gradually became so often that they joined together to form VT. Beta blockers are what then made the occasional short runs turn into all day and everyday occurrences once they had made me take them and then took me off. Beta Blocker damage is also the reason I am now on this forum.
  7. Sometimes mine will seem to read double what my heart is doing. I think what is happening is when my Autonomic Nervous System constricts the smooth muscles of my artery walls causing Prinzmetals angina, it creates such large "T" waves that the meter will read both the "R" wave and the "T" wave of every beat, therefore counting one as two. Here is one of my ECGs demonstrating this.
  8. Thats interesting, two other symptoms I didn't mention, I have a crick in the neck, so I lean my head to one side and get a massive click. I also described feeling as if I had been injected with a local anesthetic, like you get at the dentist, in the back of the neck, so my neck was numb, had this for at least a year but dont notice it so much now. As for the pain in my brain, its still there, but not to the extent it was last night.
  9. Probably not a Dysautonomia problem, but you guys might have an answer. Deep in the back left half of my brain, I get a strong but dull pain if I swallow or move my head into a certain position. Any ideas? I have suffered from feeling like a drunk zombie, balance issues, slurred speech, brain fog and Peripheral Neuropathy for two years now. I have also been seeing movements that are not there in my extreme right peripheral vision.
  10. I would say my experience is the opposite. I had no form of Dysautonomia, no nervous system problems at all, until the day I took the selective beta blocker Bisoprolol. Been off all medication for two years but my nervous system is still a mess. People assume I am drunk due to the way I walk now and the balance issues I have.
  11. All Doctors know is what somebody else who hasn't actually experienced these things has told them. Just looking at the force of those ectopic beats compared to normal ones should indicate to them that the heart is doing something rather more strenuous than the way they are told the heart works.
  12. Two years ago a had an ablation which has successfully stopped the I still get a few palpitations every day, but nothing to worry about, occasionally it will be every other beat for hours, which does make my heart ache the following day. Nobody has told me what caused it, I used to do cycle racing so wonder if I damaged it then?
  13. One of the symptoms I got was losing my sense of hunger, I did an experiment last year, went 42 hours without even eating as much as a peanut, still didn't feel hungry. This is handy as I cannot eat at all until its the end of my day as eating makes all my symptoms so much worst, its as if digesting food uses up the very little energy I have, so my balance gets bad, my speech becomes slurred. Yesterday, I did a lot of things for all day, and as a result was feeling really quite bad, as somebody had suggested not eating was maybe causing my syptoms due to low blood sugar, I got a kit, measured it yesterday after not eating for 24 hours, and working all day, and my blood sugar was still at 5.5
  14. When I was working, people were asking my manager if I was drunk, I dont feel dizzy as in inner ear problems, but its as if my balance doesn't work so I am often banging into walls now. As for dropping things, I have to concentrate now to hold onto things else I drop them.
  15. Initially, I thought maybe I had an aortic aneurysm as I would be standing still and then suddenly it felt as if something had suddenly expanded in my stomach area causing all the blood to fall down to my lower half. I didn't feel faint, it was a bit like going over a hump back bridge very quickly. This was just a single ectopic and didn't happen for days at a time, then I would get one. My GP though it felt enlarged but a ultrasound showed this wasn't the case, this was September 2014. I cannot remember what prompted the first wearing of a 24 hour halter monitor, but I didn't get any ectopics whilst wearing it, so was dismissed. Due to the ectopics happening more frequently, I tried again a year later, still didn't co-incide. and I was once again dismissed. But I was starting to know it was my heart because lying down, I could feel my heart beating in a strange way, so that instead of "ba-dumph, ba-dumph" heart beat, I would get "ba-dumph-dumph" and the third part I would feel in my belly and I could actually see it jump. So I read you could buy your own ecg which is what I did. The following is an early example. As you can see, I wasnt getting one PVC a month, it was now every fifth beat on this occasion. Gradually these ectopics grew more and mnore frequent, until they all joined together like a runaway train in your chest. Then I would feel as if I was being strangled, I could feel these ectopics as powerful beats that I could feel te pressure of in my groin arteries. Normally nu VT just feels like a mad squirrel leaping around in my chest, but on one occasion, I thought I might die as it was as if I my consciousness was on a dial that somebody would turn down every three or four seconds, but would spin it back on just before I blacked out, this went on for a bout 45 minutes. I didn't have my ECG with me on that occasion as I would have loved to know what my heart was doing.
  16. Two years of the NHS monitor wearing failing to coincide with what I knew to be my heart, prompted me to buy my own little ECG machine, that way I could record what was happening as it happened. Once I could show the NHS what they had missed, the ball started rolling very rapidly indeed.
  17. This is interesting. All my problems occurred from a soon as I took beta blockers for a few weeks over two years ago. Right away I felt like a drunk zombie, thing is, I seem to have stuck feeling like a drunk zombie even though the beta blockers have long gone. I have wondered before if taking something like Amphetamines might swing me back into the normal zone, but I too have to be careful with my heart. What stimulants did they give you?
  18. My PACs just feel like my heart stopped for a bit and I get a hollow feeling, my PVCs feel like a wet fish flopping around in my chest or like going over a hump back bridge quickly. When they are really strong, I can feel the arteries in my neck and groin as if too much blood is being pumped through them. Some times my PVCs are much lower down in my lower stomach which I can see move. When I go into Bigeminy, I can feel my back jump slightly to one side with each ectopic beat. Going into Sustained Ventricular Tachycardia feels like a pvc, then another, then more quickly another that feels like a runaway train going over a hill where all the PVCs suddenly join together, then it feels like a mad squirrel leaping around in my chest.
  19. "Just harmless ectopics" was one of the GP's response to the ECG I showed him that a cardiologist later told me I should ring an ambulance when ever I got them. (VT). This was the same GP who told me my dislocated shoulder was "old age" pain, without even looking at it, and whilst I was aged around 45. Another GP said, "Whats brain fog"? Best though was the cardiologist who in response to my accusation that the beta blocker Sotalol had given me a persistent cough said, "Ive been a cardiologist for 15 years, its nothing to do with beta blockers, pure coincidence you got the cough at the same time, maybe you've got lung cancer". (Here is a link showing coughing to be a side effect of Sotalol). https://www.ehealthme.com/ds/sotalol-hydrochloride/coughing/
  20. Did the year long cough also start "BEFORE" beta blockers? My year long cough started the day I went on beta blockers, in fact when I went to my GP about my cough he looked up Dr Google the same as we all do and said, "stop taking the beta blockers. Whilst the cough went from really really bad to just annoying, it remained for a full year later. I too also got the variable blood oxygen, even the NHS Star Trek style monitor confirmed my low blood oxygen. I also got variable heart beats as well, ie I could be just sitting doing nothing and it would be beating at 140, but other times 54. These symptoms too settled down after a year, so I am guessing they are related. In fcat my theory is that beta blockers disrupt the Autonomic Nervous System, putting things like smooth muscle constriction control out of balance so your heart vessels constrict, as do the airways in your lungs thereby triggering a cough reflex. My ANS seems to have settled down now, but I think I am left with permanent oxygen deprivation damage to my nervous system as I still have the drunk feeling, the lack of co-ordination and the bad peripheral neuropathy that all cane the day I started beta blockers for Ventricular Tachycardia. This is all conjecture of course as its all too much for anybody in the NHS to get their heads around so they blame it on anxiety which I have never had. (See one of my all night oxygen graphs top graph is oxygen which you can see spends hours below the 88% danger line, and the bottom is heart beat). (Second graph is how it is always now since my ANS settled down).
  21. I asked my primary GP for a brain scan a year or so back, he laughed, I avoid him now and found one of the Junior GPs to be much more helpful, she said to me, "We really must get you a brain scan", such has never materialised, I am guessing she got laughed at as well, money is more important than peoples health these days it seems in the NHS. Unless my cardiologist is incensed enough to see how wasteful the huge amount of money his department has spent on me, if I am left ill elsewhere, and puts pressure on my GPs, my only hope is with the good Dr Google.
  22. I see my cardiologist next month, he is the only one who has shown interest in what beta blockers did to my nervous system. So I have already drafted the letter that I will just hand over for him to read, followed by a print out explaining the mechanism how beta blockers lower blood oxygen, and how low blood oxygen damages the Peripheral nervous system. I think its easier for people to take in what is written down anyway, plus they can keep it to refer to again. :- " Soon as I went on beta blockers I described feeling like a "Drunk Zombie" and "Breathless" and as if my lungs didn't work properly. Re multiple genes that make me a slow metaboliser :- Nat 2 relates to not being able to clear beta blockers from my system and so I became overdosed and ended up semi-conscious after five weeks. Oxygen brought me around so the semi-conscious state was due to low blood oxygen. Feeling like a drunk zombie must be due to low blood oxygen. What was happening to me when asleep whilst still on beta blockers? Quite some time after coming off beta blockers, my blood oxygen was often measured at 85% for prolonged periods of the night, even when awake on the hospital monitor, so what was my blood oxygen when on beta blockers? Effects of low blood oxygen?, Peripheral Neuropathy. Nerve damage. Autonomic Neuropathy, many symptoms of this cleared up in April 2018, since then, my blood oxygen has never gone below 90% and I no longer have heart rate and blood pressure variability. Still have some eating problems but these are much better as well though eating still makes me feel too exhausted to eat during the day. Sensory Neuropathy seems to be getting worst, my skin feels numb, I keep feeling like I am being bitten, burning and tingling to mid thigh level now. Motor Neuropathy seems to be getting worst, I drop things if I do not concentrate on holding them, my walking is often unbalanced so people think I am drunk. The brain fog, slightly drunk feeling has remained the same. My deduction in lieu of nobody else bothering to deduct anything. :- I am sensitive to beta blockers and did not clear the days dosage before adding the next days. Beta blockers disrupted my Autonomic Nervous System resulting in low blood oxygen levels which have caused permanent damage to my nervous system which is heavily reliant on a good blood oxygen level".
  23. I have OCD though I learnt to manage it so its not a problem for me. Mine would have come from being abused and neglected as a child, thought that might have led to my Heart troubles which led to the medicines that have done something bad to my nervous system, so, relate in a very roundabout way.
  24. I had this from the moment they put me on beta blockers until a full year after I stopped taking them. My blood oxygen is still a little low at 92-94%, but it used to go as low as this:-
  25. Pretty much how Hutch described things, I could do everything automaitically, now I have to really think hard about every little action, else I drom things for instance, tonight I was standing by the cooker, absolutely blank, until the smoke coming from the burning toast reminded me what I was doing. The feeling I am not really here, but I am dreaming, occasionally it was even a nice feeling, like being a child new in the world, gazing up in wonder at high buildings. But things are getting worst, walking is getting worst as my legs are getting so numb. As for the lack of normal feelings like hunger, I did an experiment earlier in the year, didnt eat as much as a peanut in 42 hours, and I still didn't feel hungry. I feel I am in danger of dropping into a coma at any time.
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