Peter Charlton

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.

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?

Hi Dancer, who is and how do I find "STARS" please?

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.

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.

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!

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.

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/

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.

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.

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.

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.

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?

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.

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.

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.

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.

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

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.

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.

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.

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?

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.

There are a couple of types of sleep apnea, "Obstructive" which tends to go hand in hand with snoring, its when soft tissues relax and block the airway, I would guess this has little to do with Dysautonomia, the low oxygen readings tend to come as frequent spikes. Though having said that, the Autonomic Nervous System does dilate and constrict the bronchial tubes. The rarer type however is called "Central sleep apnea" and as far as I can see, has everything to do with the Autonomic Nervous System as it is this system that detects levels of carbon dioxide and oxygen in the blood, and maintains the correct levels without you even being aware, if this system isnt working correctly, then blood oxygen will not be at the levels it should be. This is one of the symptoms I experienced when beta blockers knocked my ANS for six, I post one of my all night reviews, you will see that rather than spikes, my blood oxygen is staying low for long periods. Funny enough, back in April, 13 months after coming off beta blockers, this particular symptom pretty much went away, I no longer get the breathlessness, and the low blood oxygen at night.

Firstly, I had not even the slightest symptom of any form of Dysautonomia in my entire life, my multiple symptoms all arrived the following morning after they put me on Bisoprolol beta blocker for Ventricular Tachycardia. They made me so ill that I cut my minimum does 1.25 tablets in half, none the less, I was still found at work, barely conscious, the nurse couldn't detect a pulse, she administered oxygen which made me feel OK but only raised my pulse to 42. They took me off beta blockers following that. That was 19 months ago, the symptoms have remained. As many here can attest to, the Autonomic Nervous System is a complicated and delicate system that is easily disrupted, beta blockers actually disrupt this system by blocking adrenaline receptors in it. My ANS never regained its equilibrium. Here is a website of a company that makes medical equipment for the study of Autonomic Neuropathy, near the bottom of the page where it lists causes of Autonomic Neuropathy it states, " Causes of autonomic neuropathy may be related to numerous diseases/conditions, medications used to treat other diseases or procedures (such as surgery): .... The following are some examples: ...... Drugs that decrease sympathetic activity (sympatholytics): alpha and beta blockers (i.e. metoprolol) " http://www.qhrv.com/dtr_ans_overview.htm