Peter Charlton

Maybe we are alike in the logical need to understand things completely, and a very useful trait it is too when you encounter over-worked doctors whose main agenda is to not spend money, and it does sound like you have quality of life symptoms that need to be addressed. I dont feel these are life threatening issues you have though which it seems is what worries you, they need to be sorted yes indeed so you can enjoy life. For instance, whilst indeed my Ventricular Tachycardia was life threatening, it was cured with an ablation. but I still get ectopic beats mind, especially after eating, have a look at this next ECG of mine, every other beat is an ectopic beat, yet my cardiologist considers even that to be fine and has written that I now have a good and stable heart and so I have started a reduced hours return to work. The heart is a pretty tough thing with back-up mechanisms. I am not worried with a heart that behaves like this.

I have this thing where if I keep my head horizontal, and turn my head slightly, its fine, but if I lean my head to the side, and then turn my head slightly as before, the two images no longer converge to become one. I think its more a question of my brain not working properly than my actual eyes. Another thing I get, sometimes when I am making tea or washing up, my eyes will both shoot from side to side and back and forth really quickly, I think this is something I have subconsciously learned to do to give my eyes/brain a rest as they no longer have to produce a detained image when I do that, but I can still sort of see.

Excuse me for being personal, but I am sure your Mum would wish you to enjoy life so do try to relax a bit, as you yourself have said, your anxiety has taken a severe toll. Google "Sanjay Gupta anxiety causes palpitations" and watch some of his videos, he is a great cardiologist, So, in order for you to be able to reassure yourself, I bought a "Prince 180B" ECG from Amazon. During my frequent ambulance rides, I was able to see what the expensive professional ECG graphs looked like, and they looked exactly like the readings from my cheap device. Ignore the machines comments though as they are rubbish, just look at the graph. Any questions on amateur interpretation, you are quite welcome to ask me as I have been off work since March and spent a lot of obsessive time seeing what these things mean. The Oximeter I got was the CMS 50F Pulse Oximeter, highly regarded by the CPAP community. As for why I dont consider I have POTS, and something I hope you will consider, its the actual adverse symptoms that I think are important, rather than readings. I see how some of these girls with POTS suffer, I have many Autonomic problems but I can stand up all day without my legs going purple or fainting. My GP rang me yesterday to say she is referring me to the Neuropathy Hospital in London, I dare say they may well give me a Tilt table test, maybe my Dysautonomia will indicate I am a little borderline?, but I haven't even listed POTS on my list of symptoms. I am thinking sure, that heart beat went up by a lot, but maybe its because I was asleep, then woke up probably as a result of being oxygen starved, then stood up, but you can see almost right away my heart beat then started to come down on its own, so maybe that part of my ANS works OK, but is just a little slow. Like I said, don't stress yourself about figures and readings, its how you function that is the important thing. Any time you want a bit of reassurance or chat, just ask, its OK for me, I am quite old now, but you are young and youth is to be enjoyed whilst you still have it.

To get the NHS to do anything, I have had to spend my own money in order to present them with evidence. They couldn't detect I had Ventricular Tachycardia for two years until I bought my own little hand held ECG machine, (See "My VT" below), I then had cardiologists ringing me up at home telling me to ring for an ambulance every time it happened. They were calling my breathlessness anxiety so I bought my own recordable SATs oximeter, when I showed my GP how low my oxygen gets, (see green graph), she has referred me, I note how my heart beat went from 63 to 114 just from getting out of bed, but I do not consider myself to have POTS. If you have spare money, such machines might be useful to you to perhaps reassure yourself that you are fine and so can enjoy your life. If there is something amiss, then useful to be able to show your GP something, but I wonder if lots of people might find things wrong with themselves if they went to too much trouble to look, so do be careful to not stress yourself into having something real that might have been avoided. Sorry about your Mum.

I only had a single shot so wouldn't have thought it would be enough to cause blood sludging which as you said, would cause a decrease rather than an increase in blood oxygen. But you suggestion has pointed me to another possibility, as alcohol is a drug that depresses the central nervous system, I wonder if the imbalance of my Autonomic Nervous System that is causing my low oxygen content and breathlessness, is temporarily put back to normal by the temporary effect of alcohol?. I will mention this to the Neurologist that my GP has today referred me too.

Last night I posted a question on the relationship of heart beat rate to blood oxygen, I also mentioned in that post that my blood oxygen, which is normally much to low, went up to a very good 99% when I drank a small whiskey, so I did the same again tonight. Where you see the green blood oxygen level quite high at the beginning of the following graph, was whilst I was drinking this small whiskey!. It soon returned to its normal low self though.

What should the heart rate and blood oxygen levels look like in relationship to each other. I noticed when I stood up gently, my heart rate went up and stayed up for a while, but the blood oxygen didn't seem to change its relationship at all? (See blue heart rate spike at end of graph below but no change in green oxygen spike). I was feeling really quite spaced out just sitting up in bed so I thought I would see what my blood oxygen levels were, they were around 90 to 92, I noticed when I drank a small whiskey I had with me that the blood oxygen went up to 99% hence the reason I recorded myself for a while, after the whiskey the blood oxygen returned to its normal low self. Guess I have found an effective medicine though.

My symptoms started the day they put me on Beta Blockers for Ventricular Tachycardia. I was found to be allergic to beta blockers, so they took me off them 10 months ago, however, most of the symptoms are getting worst. Of course the NHS didn't listen to me all this time, coming up with the old "Anxiety" chestnut, its only a few weeks ago I finally got a cardiologist to consider the logic that a medicine that disrupts the Autonomic Nervous System, might be the cause of my having a disrupted Autonomic Nervous System. Quite frightening that we put our health in the hands of such illogical people.

I describe mine as "quivering inside", and it only occurs when I go to bed and relax.

Thank you, I will add that to my rather long list. This seems to be the symptom that is getting progressively worst whereas the rest seem stable.

One of my symptoms is a brain fog that not only makes me feel a little dizzy and off-balance, but also makes me feel as if I am in a trance or a dream, I find myself feeling as if I died and am just floating around the world not feeling like I am really there, but observing the wold with a new found childlike wonder. Its quite mice in a strange, nothing really matters kind of way. Somebody on another forum brought my attention to Depersonalization-derealization and that condition is somewhat how I feel. Would anybody else describe themselves feeling this way or has my nervous system simply collapsed and sent me on my merry way?

With me, I had Ventricular Tachycardia that was cured by an ablation back in April. But what gave me all these A.N. symptoms were from the day they put me on Beta Blockers for my VT. I haven't been on Beta Blockers since March, but all my symptoms remain. Some like the variable heart rate and the breathlessness getting slightly better, whilst others like the brain fog and dizzyness, and the stomach seemingly turned itself off, getting worst. I have spent months trying to get the NHS to listen to what I have to say instead of fobbing me off with non existent anxiety, now in the past three weeks I have both the hospitals who are looking after my heart, saying they will get my GP to arrange to see the Autonomic unit at UCLH. I just hope I can hang on to my job long enough, I wonder how long the waiting list is?

For quite some years now, I add a dash of Organic Apple Cider Vinegar and a dash of pure orange to water, makes it taste nice and I read nor Cider Vinegar is supposed to be rather good for you.

You will have to Google. I did the (CASS) for you, you have a score of 1, " Patients with a score of 3 or less on the composite autonomic scoring scale have only mild autonomic failure, those with scores of 7 to 10 have severe failure, and those with scores between these two ranges have moderate autonomic failure" http://www.sciencedirect.com/science/article/pii/S0025619612606314

Its normal for the heart rate to get worst than it was before taking Bisorolol, the fact she feels better otherwise is a good sign and the heart rate will normailse once the disrupted adrenaline receptors find their equilibrium I would think.

I have bikes too, just worried that I seem to be getting too ill to ride them. As for the picture posting, I could just post this picture of my Norton directly from my computer.

My fish have helped me through this summer of ****. I have a couple of Goldfish out on the balcony. They had babies that I transferred into a few buckets so they wouldn't be eaten. With my total and utter exhaustion this year, it has been all I can do to drag myself onto the balcony, and sit and stare at the baby fishes all day.

A lovely lady. When I initially wrote to her, it was because the NHS had done nothing about my condition as they had fobbed me off with the usual "its anxiety" excuse, In the meantime I had finally got a cardiologist to actual listen to what I had to say, and he agreed it has to be Autonomic Neuropathy, so I told her, that for me, at least the wheels were now in motion. But I also used the chance to express my belief that the NHS could save a lot of money if they changed the culture of doctors who think they are demi-gods that know more about how we feel than we know are own bodies, if they would listen to us rather than considering us stupid pieces of meat. I told her that in my research I had discovered the huge waste of young peoples lives who are fobbed off for as long as 15 years before finally getting a diagnosis. Whilst she admitted that she already had a cause she was involved with, at least she has now heard of this and was Googling it as we chatted. She wants me to keep her posted regarding my treatment, I will bump into her from time to time, we shall see.

When I did mention this to my GP, he said, "arthritis", without even looking. This is the same doctor who said my shoulder pain at age 43 was due to old age, once again without even looking. Years later it was found that I had a dislocated shoulder. Unfortunately standards in the NHS have fallen so low that the only use of a GP is to write a sick note. Another GP at the same surgery two weeks ago said to me, "whats brain fog"? I do also have a click in the neck is it called?, when you lean you head right over and you get a click.

I never had any Dysautonomia symptoms whatsoever, until the day they put me on beta blockers for Ventricular Tachycardia. Right away I described feeling like a drunk zombie, not being able to feel my lungs working, and so exhausted I felt I had been turned into an old man overnight. I cut my 1.25 tablets in half, even still I was found at work in a state of near collapse. I only feel OK now when lying in bed. That was eight months ago, I haven't been near any medication since, but the symptoms are permanent and getting worst, I have found an ANS medical equipment company that states one of the things that can cause Autonomic Neuropathy is beta blockers. It has taken me eight months to finally get a doctor, a cardiologist, to admit the possibility that beta blockers have caused me to have Dysautonomia, prior to that it was the usual "its anxiety" fob off, so frustrating when you know you are not feeling anxious, just very very ill.

The back of my neck always feels numb inside, in the way that your arm does before the pins and needles starts. Could this have a bearing on my Dysautonomia symptoms?

My lung function tests were fine, my blood oxygen is sometimes as high as 98%, but when I am just sitting around it is 90 to 94% When I fall asleep however, I find myself awaking with a start as I forget to breathe. Worst was in deep sleep where I forgot to breath so had a nightmare I couldn't breathe and the ambulance wouldn't get here in time, fortunately I woke up so could take a breath. Half the nights I wear my Oximeter I see my blood Oxygen average is 85%

Tomorrow I have an appointment to see my Member of Parliament about this very issue.

As soon as they put me on beta blockers for Ventricular Tachycardia I complained that I could no longer feel my lungs work, that I had to make myself breathe. I haven't been on beta blockers for eight months, but the symptoms all remain, including this breathing issue, quite frightening to forget to breath whilst you are asleep so you dream you are suffocating and that the ambulance wont possibly get here before I suffocate. My cardiologist did organise lung function tests that came back as good, so nothing mechanically wrong with my lungs, I can get my blood oxygen level as high as 98% So I bought my own blood oxygen monitor and find that half the night, I have a dangerously low blood oxygen level of 85% and wonder if this is why I now feel drunk all the time? My theory is that beta blockers, which disrupt the Autonomic Nervous System, have disrupted my Autonomic Nervous System, permanently, and so my ANS isn't detecting the low blood oxygen levels and so is not getting my lungs to automatically compensate.

Since I suddenly got all this Autonomic Neuropathy symptoms, I seem to have lost my sense of hunger as well as thirst. I did a little experiment a few weeks back, didn't eat as much as a peanut for 42 hours, and still didn't feel hungry, though I was feeling even more drunk than this business is making me feel anyway.