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Peter Charlton

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About Peter Charlton

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  1. 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.
  2. 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".
  3. You don't go to St Thomas' do you? All my Dysautonomia symptoms arrived the day I took Bisoprolol, a junior cardiologist at Tommies got quite angry at my blaming beta blockers, said it must be a co-incidence I got so ill as soon as I started taking them, regarding the year long cough I got from the beta blocker Sotalol that they bullied me into taking by saying I would die if I didn't, he said, "maybe you got lung cancer". I had VT quite rarely before I took beta blockers, I was only on them for five weeks, once I came off I was in sustained, as in constant for up to 12 hours a day, VT every single day. Be very wary of beta blockers unless you are in danger not to take them. They have permanently ruined my life.
  4. That is indeed what happened with mine, a single PVC once a month, three years later they had become m0ore and more frequent until they joined together. This doesn't mean all PVCs will become more frequent until they become sustained VT though, I think they knew mine would as they said VT become I even got my first VT episode, so guess they can tell by looking at an ECG of a single PVC. The term "Broad complex QRS" seemed to be the indication.
  5. Mine was the other way around, I never had a single symptom of Dysautonomia all my life. My PVCs I started getting about 6 years ago gradually joined together until I got sustained Ventricular Tachycardia, it was the medicine they gave me for it that mucked up my Autonomic Nervous System. As for the VT, I used to get it constant for up to 12 hours a day and I am still here, it was cured with an ablation 2 years ago, I just get the occasional PVC now and very occasional Bigemini run.
  6. 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.
  7. 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:-
  8. 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.
  9. Well this is interesting, I looked up MAST and see I suffer from many of the syptoms, but what really caught my eye was :- " resulting in a range of chronic symptoms, sometimes including anaphylaxis or near-anaphylaxis attacks." You see, I have been found to have many bad genes that make me a "slow metaboliser", this results in me becoming overdosed on a standard dosage of the similar beta blocker Bisoprolol, resulting in me being found semi-consious after just a few weeks on this medicine, and what did the hospital state on my discharge letter? :- "Allergies/sensitivities, Active Bisoprolol-Anaphylactic shock. Can I ask how you got the MAST diagnosis please, the NHS is really struggling to give me a diagnosis for my symptoms that have remained for a further two years since coming off beta blockers.
  10. Thanks Dancer, though looking at the website they look to be a charity for fainting and seizures, neither of which I get and whilst I m sure somebody there would have the expertise to be of assistance, I couldn't use resources that would be better employed on the people the charity is set up to help. Tomorrow I have an appointment at my doctors for yet another blood test, in anticipation of being referred to a Rheumatologist, my GP noticed I have family members with ME and with Fibro-myalgia, so she has decided to explore that route?
  11. Following my dismissal from the Autonomic Unit of the UCLH in London as I didn't show any symptoms of POTs which is not something I ever claimed to have symptoms for anyway. I saw my GP today and she admitted she was at a loss, she actually asked me if I could research for a Doctor in the UK that she could refer me to, which I thought very professional of her, most doctors here don't like any input from the patient. So, does anybody know any specialists her that can look into other aspects of Dysautonomia rather than just the common cardio-vascular aspect please? Maybe one who is familiar with all aspects of Neurology as my condition is definitely something wrong with my nervous system even if it doesn't fall under the Neurology umbrella.
  12. Firstly, I am not a cardiologist, just a medically retired mechanic. That last line, where it has the bigger gap between the QRS waves, that is a PAC. I attach a picture of one of my PACs. My second picture will be of a PVC, rather than a gap, they have this huge spike. Picture that looks like a child's scribbling, is my Sustained Ventricular Tachycardia, when its like this they like to see you in ER. PACs and PVCs are nearly always benign and they say nearly every body gets them. Last picture is how my heart looks like when I suspect I am getting Prinz metal angina, or Coronary artery spasm, feels like really bad heartburn, you will notice that the little bump after the normal spike of the QRS is actually huge, this is called the "T" wave and is a sign of LAD Occlusion which would in effect block coronary arteries the same as Prinz metal angina, so I don't think I am wrong in guessing one would see a similar ECG. Please note if you ask a question of me, even though I select the notification box, I never get notifications, apologies if I don't reply.
  13. Worst thing I ever did was revealing to health professionals about my abused and neglected childhood, like that wasn't bad enough, they now use it as an excuse to not treat or investigate me because they can just blame it on my childhood, and clear another patient off their busy books. I did reason with one cardiologist that I had gone my whole life with no psychosomatic symptoms from child abuse until the very day they put me on beta blockers, "why would childhood anxiety manifest itself the day I take beta blockers?" I asked, "beta blockers disrupt the Autonomic Nervous System and every one of my symptoms is a symptom of a disrupted ANS, surely that warrants at least investigation?", said cardiologist apologised for blaming it on childhood anxiety, unfortunately the Autonomic Neurologist at UCLH seemed very interested in my childhood as the records are on my notes, and has discharged me rather than carry out more appropriate Dysautonomia testing. One trick you can try, call their bluff, if they say its psychosomatic, then insist on being referred to mental health specialists, I did, right away the Psychologist said to me, "I can see you don't have even slight anxiety, they are always doing this, it makes me so mad", and she discharged me right back to my GP telling them to find the real diagnosis. I have been called in to see my GP again next week, I might suggest to her that she refers me to mental health again just to waste the money they think they are saving by fobbing me off!
  14. A good point, but I have to say that in all the links I have looked at, measures have been taken to stress the opposite whilst acknowledging there has been a tendency amongst health professionals to act in the way you suggest. The very change of the term from "Conversion Disorder" has in itself been a measure to correct this view, the notion having been that physical symptoms were simply a conversion of mental problems into physical ones.
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