Peter Charlton

5 minutes ago, bombsh3ll said:

Anybody know what treatments he uses? I couldn't actually find any mention of therapies on his website. I have pretty much exhausted all options except stimulants, injectables and IV fluids. 

B x

See all his you tube videos, he has plenty of good advice. https://www.youtube.com/results?search_query=york+cardiology

Would certainly explain my dysautonomia that arrived the day they put me on beta blockers and that have remained 19 months after stopping them if the passed the blood-brain barrier!

14 hours ago, blizzard2014 said:

Have you ever been tested for Antiphospholipid Antibody Syndrome "Hughes Syndrome!" A lot of people who have autonomic dysfunction also have this syndrome. It cause mental confusion and balance problems because of sticky blood. You can ask your doctor about trying a daily low dose aspirin to thin the blood, and if this helps, maybe you have sticky blood. But you need to discuss all of this with your doctor as a lot of medical issues can cause brain fog and balance issues. It's just something to look into. 

Not that I am aware of, but I did start a thread here a while back along the lines of as I have Oedema due to a measure of heart failure, even if a drink enough, if the fluid just hangs around in my legs and feet, would that give me the same symptoms as dehydration?

3 hours ago, p8d said:

I have had days where I go catatonic.  Just can’t talk or think.  I also frequently can’t find words.  One of the more amusing was trying to tell my husband something about my ankle.  I spent ten minutes trying to think of the word then just blurted out “you know, feet wrists”! I really hate not being able to read anything remotely difficult or even light stuff for more than about a half hour.  I used to read court transcripts and dense government policy documents and enjoyed it.  I can’t concentrate and get extremely fatigued.  All that hey is sleep.

The other day I fancied a coffee, boiled the kettle, went to get my cup, and found it full of the steaming hot coffee I had literally just made already!

10 hours ago, WinterSown said:

Have you yet been tested for vertigo? Your primary can do a Dix Hallpike test in their office, they will know in moments if you have vertigo.

I saw my GP just a couple of weeks ago and did mention vertigo but in a sort of dismissive way by saying, "if it was something wrong with my inner ear, wouldn't I feel a spinning dizzyness?, I just feel off balanced", I said this in the hope that she might consider testing for Vertigo if she thought it a possibility, but she is happy to wait for the Autonomic testing she arranged for me last December, if that doesnt come up with anything, come back and see me, she said!

The fact it all happened from the day In first took beta blockers does make me think its all Autonomic, if it was vertigo, it would have to have been a co-incidence to have started the same day as taking beta blockers. Also, my symptoms get worst as the day progresses, and eases off when I lie down, wouldnt vertigo be a constant?

 

 

Feeling much better having been laying in bed for a few hours now.

Dr Gupta who is one of those rare Cardiologists who understands POTS, has posted some patient stories of POTS patients for those who are interested.

https://drsanjayguptacardiologist.com/patient-stories/

2 minutes ago, bombsh3ll said:

Yes, I think dysautonomia absolutely can cause such bad cognitive issues. That is certainly my experience. I too can be sitting there with perfect heart rate, BP and O2 sats and feel extremely lightheaded and out of it. 

Remember that peripheral measurements of heart rate and blood pressure are not surrogates for either cardiac output or cerebral blood flow. To calculate cardiac output, stroke volume has to be known, and that can only be measured with much more advanced and invasive tests. 

So two people can have the same heart rate and blood pressure, but vastly different cardiac outputs and hence cerebral blood flow. 

I just wish more doctors remembered the basic principles of circulatory physiology from medical school rather than deeming a highly symptomatic patient to be perfectly fine based on their peripheral vital signs being normal. 

Have you got a date for the autonomic unit yet? Is it the one at UCLH? That's where I am currently trying to get in once they accept my out of area funding. 

best wishes,

B x

 

Thanks all.

Yes I have three appointments in the week around 24th September. Yes, it is at the UCLH, Just a bit worried that the nice Lady doctor I saw in February who said I had "Autonomic Instability"m Dr Iodice, well she is no longer at that hospital, I do hope I dont get one of these doctors who fob you off at the slightest excuse to lesson their workload. 

My brain fog and balance issues have been steadily getting gradually worst as a full year has gone by and my tests are not until the end of September.

I worry though that there might be something seriously wrong with my brain that nobody is looking into whilst they wait to see what the Autonomic Neurologist says, but as its taking so long and I am getting worst, I worry that something that needs treating urgently is being missed because they only want to test me one thing at a time.

Today, I feel as if I have drunk a whole bottle of neat vodka, Its hard to stand up straight, if I love my eyes, its quite a delay before my brain stabalises the new image.

I took my blood pressure, heart and oxygen rate and everything looks fine, but I feel so dreadfully ill.

Can Dysautonomia cause such severe brain fog?

Now the weather has cooled down a bit, I am so exhausted all the time that I let myself sleep all day, maybe once a week. I get my eight hours, wake up for a bit, then fall back to sleep for the rest of the day, and still go to sleep again that night. It does make me feel better except that I have a back condition that does not respond well to lying down for long.

36 when I am asleep sometimes it would seem.

7 hours ago, bombsh3ll said:

Thanks I just looked up this device and might get one for when I am having a lot of irregular beats. It looks as if there are multiple ways to use it, which do you use? Do you ever use the leads with pads? Do you hook it up to a computer screen to see the actual ECG?

 

 

B x

 

I did buy the leads, but have never used them as just putting my dampened fingers on one end, and the single end to my chest tells me all I need to know.

You can see the actual ecg on the devices own screen, it can store a lot, if I want to, I connect it to my computer from where I can store it and print it.

5 hours ago, bombsh3ll said:

I am also interested in the home ECG devices, cost, accuracy, ease of use etc and would like to hear people's experiences.

B x

The NHS couldn't find anything wrong with me in two years, as my symptoms never co-coincided with their Holter monitor tests, so I bought a Prince 180B ECG, I see they are £92 now on Amazon, its written interpretation is rubbish, but the actual graph is the same as I see in the ambulance. Its a bit convoluted to print, but I can walk you through it. Best thing I ever ought as the NHS couldnt detect my VT in over two years. I attach one of my ECGs from it.

The Oximeter I use is a Contec CMS50F £80, even though I have fat fingers, I can wear it all night, this also compares well to one the NHS gave me to wear for a couple of days, I also attach a chart of mine from this.

It took me from January last year when I first got the breathlessness, brain fog dizzy, drunk zombie feeling, to December before I got my cardiologist to listen to my logic.

He, like the rest of them, said its anxiety, from am abused childhood back in the 60s.

So I said "I have never had a days sick in my life from childhood anxiety, why would I suddenly get it the day you put me on beta blockers?, whats the connection?", I then said" what makes more sense, is that beta blockers disrupt the Autonomic Nervous System by blocking adrenaline receptors, every single one of my symptoms, is a symptom of a disrupted autonomic nervous system, surely that warrants at least investigation"?

He said, "I think you are right", apologised for the anxiety fob off, and got my GP to refer me, so far to a diagnosis of "Autonomic Instability".

Last time I saw him he told me he now has another patient who has had the same permanent reaction to the same beta blocker, (I was only on a minimum dose for a couple of months, Jan and Feb 2017.)

21 hours ago, WarpedTrekker said:

@Peter Charlton I have similar oximeter, that I have been wearing at night. Mainly I got it, because I have sleep apena that was still not controlled until recently with a BIPAP and dental appliance. But about three months ago, I started having some weird "unwell" feeling during the day, where my respiratory drive felt depressed. When I laid in bed, it got worse, and it caused me to stop breathing (central apneas). But normally I don't have central apneas. My oxygen would drop to low 80's. Now...I did have a recent DVT/PE during this time, but even after that, I kept having these episodes. No local doctor ever figured it out. I'm on Multaq for AFIB and Bystolic, and have always wondered if that contributed to these symptoms. It seemed to happen more, if I ate heavy meals during the day with the medicine.

 

I get the feelings you describe from the day they put me on the beta blocker Bisoprolol, I described feeling as if my lungs were not working and that I had to remember to breathe, as if it wasn't being done automatically. I would get out of breath when I talked. Yet my lungs were tested as being mechanically fine and I have seen my blood oxygen as high as 99%

Blood oxygen levels are one of the things controlled by the Autonomic Nervous System, its one of my symptoms that got me referred to the Autonomic Unit at LUH.

Funny thing though, back in April, thats 14 months since no beta blockers, something change in me, I no longer feel the breathlessness, my blood oxygen, whilst low, is usually around 90-92 rather than dropping to the mid-eighties. At the same time my Heart PVCs that had been every other beat, they stopped and I got the occasional PAC instead.

The only symptom that seems to be getting worst for me is the feeling I am drunk.

22 hours ago, Weary said:

 

@ Peter: what was the cause of the initial ventricular tachy; i'm surprised you survived that!

No idea what the initial cause was, initially just a funny feeling like you get going over a bridge, and only every few months. When it became more regular I tried the NHS, after they failed to find anything in two years, I bought my own ECG, my GP said "Benign Ectopics, nothing to worry about", its only because I had a friend who was a secretary for a cardiologist at St Tommies, that she got a second opinion, next thing I had a cardiologist o the phone telling me to ring an ambulance every time it happened, which of course being a bloke, there is no way I would be doing that.

It was Boxing day 2016 that I felt somebody had a dial that turned me off, and they would turn it down every three seconds and then back on before I blacked out, so I went to St Thomas' a few days later, which is when they put me on beta blockers and my troubles really started.

So they took me off beta blockers, and now instead of just a few ectopic beats in a short run, I would be in constant Ventricular Tachycarida all day long, and every day, see one of the ecgs I took, and I still didnt call an ambulance. It was only after a couple of months that I did one night because it was 3am and I was still in VT, had been like this since midday, of course I got a telling off.

The ironic thing is when I went to a sleep clinic for my low oxygen, the doctor fobbed me off and claimed I was a hypochondriac! wrote to my GP to tell them I had "Health anxiety"!

23 hours ago, dizzytizzy said:

Interesting topic.

The second link is to an article about insulin therapy in pregnancy though.

Dont know how that happened, try this

https://www.ncbi.nlm.nih.gov/pubmed/24944034/

2 minutes ago, dizzytizzy said:

@Peter Charlton: What damage is that, Peter? Downregulated BP and HR?

What were your symptoms to prompt the beta blocker usage?

I had Venticular Tachycardia.

Lets see if I can remember the list of syptoms that arrived with beta blocker usage and remained after I was taken off them.

Firstly, I felt as if I was a drunk zombie, and I could no longer feel my lungs working, I would get breathless and forget to breathe when talking, its as if I had to remember to breathe. Maybe my heart rate going so low would account for such?

When I was in hospital, their machine was constantly bleeping as awake, my blood oxygen was 87%. I eventually bought my own which showed it would often spend my sleeping hours at 85%, yet lung function tests showed I had good lungs, and I could get my blood oxygen to 99% if I really tried. I also developed a horrific cough when they tried me on a different beta blocker for a week, the cough remained until April of this year as a tickle that gave me a constant urge to cough.

My stomach seems to have turned itself off, I no longer feel hunger, I have had to give up eating until the evening as eating makes me feel so exhausted that my speech becomes slurred and my balance even worst.

My blood pressure was previously a little high, generally about 137, at the Autonomic Unit at Queens Square they found it drop by over 20 points when I stood up after three minutes.

Worst thing is the brain fog, the feeling I am drunk and disorientated, I really feel as if I have brain damage, my balance gets worst as the day goes on, I only feel relief when I lie down now, so my days are short and unproductive, I have lost my job. Today for instance, I put the kettle on to make a cup of coffee, reached for my cup to find it full of the still hot coffee I had only just made!

My heart rate used to be all over the place, sometimes really low, then for no reason and whilst just sitting down it would shoot up to 150.

I think I get Prinz Metal Angina now, for mo reason, and certainly not from eating!, I get a real band of pain across my chest, an ecg shows massive T waves when this occurs, higher than the R waves sometimes.

Somebody on the Facebook group for Brain fog posted a link to an article that states those who suffer from Chronic Fatigue Syndrome, also suffer from Brain fog, and it was discovered they had  lower levels of certain immune-system proteins called cytokines.

So of course I then did a search to discover that Cytokine levels are tied in with the Autonomic Nervous System!

https://www.medicinenet.com/script/main/art.asp?articlekey=187730

https://www.ncbi.nlm.nih.gov/pubmed/24944034/

My favourite topic.

I was a very active and fit person until the day they put me on Bisoprolol beta blocker, turned me into an old man overnight, a drunk zombie, so I cut the minimum dose tablets in half, they still found me barely conscious at work with no detectable pulse, oxygen brought my pulse up to 42bpm.

So they took me off beta blockers March of 2017, unfortunately, the damage is permanent.

It was I who had to suggest the NHS look into the possibility that a drug that disrupts the Autonomic Nervous System, has disrupted my Autonomic Nervous System, only took about 7 months before I got the one decent cardiologist, (at St Georges), to listen to me, he now tells me he has another patient with the same long term damage from beta blockers. 

I have just given up eating until the end of the day as eating really knocks me out, its easy for me as I also lost my hunger drive.

Come six pm, I have a light meal and then shortly lay in bed which feels so so good.

21 hours ago, StayAtHomeMom said:

I seen in a basic lookup that there are 4 different types of drugs that can be used for your conditions. Have they tried you on anything else besides the beta blockers?

Because I am waiting, (since February) for Autonomic testing at the London University Hospital, everyone uses that as a reason for not giving me any further investigation or medicines in the meantime, so no, I am getting any treatment for anything. The NHS now do the very minimum they can get away with.

57 minutes ago, blizzard2014 said:

Are you on Amlodipine? I was on that for a few weeks and my legs and feet swelled up so bad, I couldn't even get my shoes on. Sometimes it can be the medications that cause you to have the swelling. Also, mild heart failure can cause the swelling too if you are not on the proper medications. I also have an enlarged right heart, but so far it is still pumping good with no signs of heart failure yet. It is scary though when I lay in bed at night and think about it. I too am a former smoker for 15 years. I can no longer tolerate smoking since I had blood clots in my lungs. I get deathly ill after a few puffs on a cig these days or else I probably would still be stress smoking. Cigs do quite a number on the body though. It's best to avoid them now that you have all of these medical issues. I can tell you this though with regards to trying to research symptoms on the internet. You can be convinced that it is this one thing, when in reality it is something totally different. Also make sure your doc's do not get tunnel vision. Since you have mild heart failure on your chart. chances are, that's all they're going to see when you go to them with new symptoms. They're going to put it all down to your heart problems. When I go to the docs with all of my weird symptoms, they always try and put it down to blood clots in the legs and lungs, because that is the biggest thing on my medical chart. This can also prevent you from receiving a proper diagnosis.

For two years I was convinced I had chronic blood clots in my lungs causing my shortness of breath and feeling unwell. I had 2 CT scans of lungs and lung veins and one VQ scan that revealed completely normal lungs with all previous blood clots dissolved. I was exposed to a bunch of un-needed radiation for nothing. All because me and the docs only saw the blood clots. It had to be the blood clots. As it turns out it was high BP and HR upon standing that was making me feel so unwell years after the clots in my lungs cleared out. I was focused on the wrong thing and was proven wrong. You might have autonomic dysfunction, or you might just have problems from your enlarged heart. You will never know until you get all of the proper medical tests done. It takes time and also takes the right team of doctors who want to help you to find answers. Sometimes doctors want the easy patients. But we are Zebras and we are not easy to figure out. Thus sometimes we need a special doctor to help us. I hope you're feeling better. 

J

I am not on any medication for anything, very wary anyway as all my current problems arrived when they had me on beta blockers for a month 18 months ago.

I too am a little concerned that my neurological symptoms are getting worst whilst other Autonomic symptoms seem to be getting better, that the health profession wont do any other checks on me for anything else. I went into A&E last Friday at St Thomas' as I was there already, in the hope I could get them to instigate something, but the doctor there said it sounds like Autonomic Issues, so I will just have to wait. Its quite Ironic that until I reasoned with them, they wouldn't entertain the idea that I had Autonomic Issues.

2 hours ago, bombsh3ll said:

Sleeping with the head of your bed elevated is also said to be helpful in reducing nocturia and increasing blood volume. I personally haven't found it helpful but I keep the bricks under my bed in hope! I've never had oedema though. 

How is your protein intake?

Best wishes, I hope you get some relief soon.

B x

I do sleep with the head of my bed elevated, completely cured my need for Rennies heartburn tablets, its only this heat that is reducing my normal four trips to the tiolet each night!

I dont eat a lot these days as one of my symptoms is feeling quite ill after eating, but I would say the proportion of protein is the same as it ever was.

6 hours ago, StayAtHomeMom said:

 

Has your blood sugar ever been checked? My mom and brother have type 2 diabetes and night time trips to the bathroom was one of their first signs. 

I am not sure about how your oedema and mild heart failure would effect your body. I would try to stick to what the doctors say. Maybe try calling to get into a canceled appointment slot. 

Have frequent blood tests, even complete ones, only issue was a tiny bit low in Folic acid which my GP then says everybody has!

I told them at the Autonomic Unit back in February I am available within hours for any cancellation, has made no difference though.