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Peter Charlton

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About Peter Charlton

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  1. Apart from one year in the mid-eighties when I let one of my rooms to a friend, I have lived totally alone since I came out of the Royal Navy in 1978. Wasn't so bad when I was working, but whatever has gone wrong with me nervous system has lost me my job and I am on the verge of being housebound due to my symptoms. I do have a couple of half-sisters and family in Sweden, they want me to visit but just the train journey into town for medical appointments knocks me for six. I did have sustained, (as in every single day for up to 12 hours constant), Ventricular Tachycardia, but that was cured with an ablation, the most frightening thing was the feeling of suffocating I got until my ANS regained its regulation of my blood oxygen for a full year after beta blockers. I have completely given up with the National Health Service now so completely alone. Fortunately my cognitive abilities are dwindling to the point I feel constantly drunk now so don't care.
  2. Peter Charlton

    UCLH says "Goodbye"

    They did do catecholamine tests lying down and upright, but if they did aqn antibody test they never mentioned it, not even on my follow up appointment. Not sure about my next step, I am gradually deteriorating so think I might just wait until it will be impossible for them to dismiss me. Best wishes to you as well.
  3. Peter Charlton

    UCLH says "Goodbye"

    The thing is, yes, I saw a neurologist at Britain's foremost Autonomic Unit https://www.uclh.nhs.uk/OurServices/ServiceA-Z/Neuro/AUTU/Pages/Home.aspx The neurologist could see something was wrong with me due to my balance problem, she did the normal touching your nose test, and said she didn't know what the answer was, but that there was nothing wrong with my cardio vascular autonomic system, surely she would have known that there are other systems that suffer from Dysautonomia, I though she would have arranged different tests instead of just sending me away with no clue what I am supposed to do next.
  4. Peter Charlton

    UCLH says "Goodbye"

    Can I ask what your T-Wave abnormalities look like please because sometimes when I am feeling particularly bad and take an ecg my T wave towers over the preceeding R wave but I read its never supposed to go above a third of the R wave.
  5. Peter Charlton

    UCLH says "Goodbye"

    So, after being told I have "Autonomic Instability" and finally getting the promised tests, I had to go to the Autonomic Unit at the UCLH to hear that the tilt table test and blood pressure tests shows my Autonomic System is fine so not to come back. Is that really the case that any problems with the ANS will also effect blood pressure and heart rate, that you cannot have other symptoms of Dystautonomia without having POTs at the same time? So I really am at a loss now, whilst some of my symptoms such as low blood oxygen, erratic heart rate, arrhythmias all got a lot better at once back in April, the loss of appetite, early satiety, the drunk feeling, the peripheral neuropathy, the balance issues, the brain fog, the total exhaustion are all getting steadily worst. Any suggestions as to where I should go next please?
  6. Peter Charlton

    Oxygen level readings in the ER?

    By the time the slow wheels of the NHS got in motion, my oxygen levels, whilst said to be low, were not the problem they were. My VT was cured with an ablation April 2017 Quite some years ago, they put me on SSRis for depression, did absolutely nothing for said claimed depression, but, not that I am an anxious person in the first place, but those SSRis made me lose any anxiety I might have had. Quite dangerous really as they made me feel indestructible whilst riding my motorcycle through heavy London traffic.
  7. Peter Charlton

    Oxygen level readings in the ER?

    I am not on any meds, last med was Sotalol in March 17, just for a few days as it gave me a horrendous cough that lasted for a year. Prior to that I had been on Bisoprolol to which it was said I had an anaphylactic reaction, apart from the cough, all my Dysautonomia symptoms arrived with the taking of Bisoprolol and some have remained for 21 months now. I can understand that arrhythmias can make it hard to get a reading, but that wouldn't explain the jumping awake because I forgot to breathe or the suffocating nightmares. Can you remember what the "long term side effects" where and if they go away? Whilst the cough and breathing and palpitations seem to have resolved spontaneously back in this April, the exhaustion, brain fog, balance issues, feeling drunk when standing up, have all remained. The feeling full after eating just a small amount seems to be in the process of getting better.
  8. Peter Charlton

    Oxygen level readings in the ER?

    I noticed this when I was in the cardiac ward, oximeter alarm constantly going because of my oxygen levels, despite what I did with my finger. Now this was one of the first Dysautonomia systems I got from the day they put me on Beta Blockers for my VT, the feeling of breathlessness, as if I had to remember to breath, I even started forgetting to breathe whilst asleep, waking with nightmares of suffocation. Its one of the things the Autonomic Nervous System does, detect carbon dioxide and oxygen levels, and get you to breathe appropriately. So, in my efforts to get health professionals to actually investigate me, rather than fobbing me off with "its anxiety", I bought my own oximeter. Despite having stopped taking beta blockers many months previously, you can see my oxygen levels to be around 85% for half of the night. Then April of this year, something changed in me, I got far fewer palpitations, no longer had the feeling of breathlessness or the nightmares, the year long cough I got from Sotalol stopped, and my blood oxygen has never gone below that red line for long again, even though I am using the same meter with the same fingers, so differently something was happening. Pre and post April graphs for you.
  9. Peter Charlton

    Evening meal - danger zone

    I have pretty much the same thing except that I have given up eating anything at all during the day as it ruins my day for me, I become so exhausted I start acting as if I am drunk. I therefore only eat in the evening, that way, I have recovered from eating overnight in time for the next day.
  10. Peter Charlton

    Atenolol side effects

    Beta blockers, Bisoprolol specifically, are the reason I am here in the first place, I was perfectly fit and healthy before taking them, as soon as I did however, I got the symptoms you describe, and more, they turned me into an old man overnight and I have lost my job as a result. My days tend to be no longer than six hours now, and if I do anything such as go out, I then have to spend the following day in bed. For me though, the symptoms have remained for now a full 20 months since I last took one, they disrupted my Autonomic Nervous System, which is of course what they are designed to do, but my Autonomic Nervous System never recovered. To me it is so ironic that people with Dysautonomia are given beta blockers, from my point of view its like somebody being prescribed cigarettes to help manage their lung cancer. (Though of course I can see why they are given to people with Tachycardia). If you read down to the end of the following, you will see one of the causes of Autonomic Neurapathy is beta blockers. http://www.qhrv.com/dtr_ans_overview.htm
  11. Peter Charlton

    breathing

    This was my second biggest symptom that lead me down the Dysautonomia path. Started the very day they put me on beta blockers, I would comment that it felt as if my lungs no longer work and I had to remember to breathe. It was even worst when talking. They took me off beta blockers but the feeling of breathlessness lasted a full year after. The worst one was forgetting to breathe when asleep, I would have nightmares that I was calling an ambulance because I could no longer breathe and worried how quickly they could get here. Turns out its one of the tasks of the Autonomic Nervous System, to detect oxygen and carbon dioxide in your blood, and get you to breathe appropriately whilst you are asleep. Living alone, it is something I though I could possibly die of, if I become unconscious due to my breathing having stopped, I wouldn't be able to wake up from it. And it wasnt just a feeling, it was real. When in hospital, I noticed the machine constantly bleeping, because my blood oxygen was only at 87% when awake!. I therefore bought my own oximeter in an attempt to get evidence so the health service would stop fobbing me off with the "its anxiety" fob off. Here below is an example of what half the nights looked like oxygen wise. Fortunately, in April, something happened that meant my breathing issues sorted themselves out, and my palpitations really reduced.
  12. I just had mine done last week after waiting since February 8th! I now have to wait another month at least, to be called in to hear what the doctors have decided upon after seeing the results. Of course I am a little concerned they didn't find anything as it was so comfortable just lying down, its like when I went into ER, walking like I am drunk, slurred speech, by the time I have had a nice rest waiting for hours to be seen, my symptoms have subsided! Nothing horrible happens, the people (at the UCLH) were really nice, they don't torture you, (apart from the bit where you have to hold an ice pack!), or put you in prison if you fail, so just think of it as a nice day out, a new experience, like going to see a play at the theatre you haven't seen before.
  13. Peter Charlton

    Dizzy And Very Lightheaded From Talking

    Thanks Pistol, I will see what the results are, the technicians didnt give any impression they found anything wrong, and I didn't feel anything drastic from the TTT, though it feels so much nicer lying down. Can I ask is one of the symptoms of HyperPOTs an uncomfortable feeling in the stomach when drinking?, I have lost my sense of hunger and feel full with much smaller meals than I used to eat, but I am thinking maybe I should be drinking more, but it hurts my stomach a bit. Its also quite convoluted for me to interact with this site. Even though I have the box ticked, I get no notifications, my password is never recognised either, so I have to click the forgotten password box to reset it, but then when I click on the e-mail link, that same password is already there and I don't need to change it! Just mentioning this in case I miss kind words people might say and wonder why I dont respond.
  14. Peter Charlton

    Dizzy And Very Lightheaded From Talking

    Had three days of Autonomic Testing at UCLH this past week. The technicians leave it to the doctor to share the results, so I don't know what they found. I did notice however that my blood pressure was 157 when standing and that it quickly went down to 114 when lying down, The technician also seemed to do something extra, "to be sure", when measuring blood adrenaline levels before and after tilt testing. So wondering if I have Hyperadrenergic POTs, I do get some of its symptoms such as the edema. But for the purpose of this thread, I read, :- " People with hyperadrenergic POTS seem to experience an increase in symptoms when any event occurs that causes an even greater release of norepinephrine. " Wondering if just the act of talking increases adrenaline levels which put us further into fight/flight mode, constricting blood vessels which increase blood pressure, getting us to breathe harder in case we need to run? making us feel out of breath for no reason, because the body wants that oxygen for something more important than talking?
  15. Hi Andy, I believe I have some form of Neuropathy as my feet and lower legs are constantly buzzing, the soles of my feet feel as if I have just been beaten on them, this happens all the time now, even if I have spent a day in bed. My GP stabbed me in the leg with something sharp and asked if I felt it, I said yes, but she wrote down no, I guess I should have reacted to something that to me felt quite numb. I might have to change the view I initially expressed in this post. Firstly I said the edema is due to heart failure, whilst it may be, my heart failure if at all is quite mild, an enlarged heart, some scar tissue, Mild Mid LAD disease, are some of the things picked up by an MRI scan, but this week I finally had some Autonomic Testing at the UCLH, whilst I seemed to pass everything OK, had no bad feeling from the tilt table test, what I did notice was standing up my blood pressure was 157, then as soon as I lay down it went down to 114, I have to wait a month to hear about the results, but if it turns out I have Hyperadrenergic POTS, this could explain the edema rather than heart failure. I also read it can cause hypovolemia as well. Time will tell.
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