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Peter Charlton

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About Peter Charlton

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  1. Peter Charlton

    Dissociation any one ?

    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.
  2. Peter Charlton

    Can beta blockers cause MCAS?

    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.
  3. Peter Charlton

    Doctor recommendation in UK please?

    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?
  4. Peter Charlton

    Doctor recommendation in UK please?

    Hi Dancer, who is and how do I find "STARS" please?
  5. 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.
  6. Peter Charlton

    Heart issues, Cardiologist not helping

    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.
  7. 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!
  8. Peter Charlton

    Functional Neurological Disorder / Conversion Disorder

    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.
  9. Wondering if there is a link, crossover between Functional Neurological Disorder. and Dysautonomia. Certainly many shared symptoms. It has been likened to having a software problem that makes perfectly undamaged hardware perform incorrectly, that parts of your structurally normal brain are not communicating with each other correctly, automatic parts of the nervous system not being given the correct instructions, sound familiar? http://www.neurosymptoms.org/ https://rarediseases.org/rare-diseases/fnd/
  10. 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.
  11. 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.
  12. 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.
  13. 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.
  14. 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?
  15. 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.
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