Peter Charlton

6 hours ago, StayAtHomeMom said:

My family will never believe I am saying this but it is usually not good to look things up. I would go see a doctor.

Maybe see if compression stockings could be helpful in your situation. They are supposed the keep your blood from pooling in your legs. Be safe and good luck. 

I have tried Doctors here in the UK for over a year about this, it is too complicated for them so they could not help so I have to do their work for them.

I did arrive at the conclusion beta blockers had permanently disrupted my Autonomic Nervous System and told them, of course for the longest time they wouldn't listen, but when they did and referred me to the Autonomic Neurology unit at the UCL, I was told I had Autonomic Instability and a whole host of tests was to be had. Unfortunately, the tests have a waiting list of first of all five months, which has now increased to eight months now the five months are up.

I do not foresee them being any help and the GPs will not instigate any further investigation whilst I am being investigated for Dysautonomia, so my own research and application is truly my only hope.

Feeling really quite spaced out, I took my blood pressure when standing after having been sitting for some time relaxing.

Blood pressure was about 24 points less than my normal, (114 rather than 137), pulse was 111, my resting pulse is usually quite low, 67 as I write this.

So I looked up possible causes and find "low blood volume, which could certainly explain why I feel drunk and spaced out the longer I am out of bed. 

Trouble is, I also have Oedema, due to mild heart failure, my urination tends to occur at night with the help of gravity when I am lying down.

I read that blood volume can be increased by increasing salt and fluid intake, but not to increase salt if you have high blood pressure and heart failure.

Is there anyone on the forum with both oedema and low blood volume?  Are you told to increase your fluid intake? 

This isnt a hot weather thing, I am just as bad when its cold.

I am here due to beta blockers permanently doing something to upset the balance of my autonomic nervous system which remains off balance even though I have been off beta blockers 16 months.

One of the first symptoms I complained of from the day I took beta blockers, was feeling as if my lungs no longer worked, I would forget to breathe, especially when talking.

When I was connected to the hospitals oximeter, the alarm was constantly sounding as my blood oxygen was only 87%, so I bought my own oximeter and discovered that many nights, I spend half the night at a dangerously low 85%, and I would have night mares of suffocating. I have subsequently been referred to a sleep apnea clinic for which I see the doctor for the results tomorrow.

But I know its not obstructive sleep apnea, it happens constantly, I know its dysautonomia and the mechanism is that the Autonomic Nervous system has receptors to monitor your blood carbon dioxide and oxygen and gets you to breath automatically when your oxygen is low or carbon dioxide too high, if you have Dysautonomia, this system might not be working correctly.

I posted the other day about low blood oxygen  being even worst for us, because the ANS can compensate for low blood oxygen by increasing blood pressure, and of course blood pressure is also controlled by the ANS, so maybe this back-up system to compensate for low blood oxygen doesnt work either?

Since April, this particular symptom has much improved in me, so maybe that part of my ANS is resetting itself from the beta blockers?

I wore my oximeter last night as I was feeling a little breathless and saw this morning it spent most of the night at 88% which is certainly a touch better than it was.

I have had all the lung function tests which showed I had good lungs.

I had this symptom, along with the feeling my lungs didnt work automatically and I would forget to breathe from the day they put me on beta blockers. The hospital SATS showed my blood oxygen to be 87%. I bought my own oximeter that records overnight and that showed I would spend long periods at 85% when asleep.

They took me off beta blockers after a couple of months due to how ill they were making me, but the symptoms remained, it is why I am here, they have given me "Autonomic Instability"

The good news is, 13 months after stopping the beta blockers, the breathlessness and running out of breath when talking, seem to have suddenly gotten better on their own, my blood oxygen is now always in the low 90s as well. 

I am hoping my body is gradually re-setting its ANS after the damage beta blockers did to it, still a few other symptoms to go though.

Hi Don, I have the Reveal Linq device, since January or February 2017.

They told me that it detects events and sends them automatically, I am not convinced it does this, you can press the button in the afternoon and it tells you when it last sent, sometimes I have bad events that I get a telephone call from the hospital about, but its never as a result of the machine working automatically, I almost always have to use the keyfob, then download manually using the brick.

I already had my own ecg, (see one of my tracings from it below), I get so many palpitations that I would be bothering them all the time so I use my ecg to see how bad it looks, when its bad I use the keyfob.

Bit of a technical question.
I attribute my brain fog to beta blockers damaging my autonomic nervous system as it was the day they put me on Bisoprolol that I complained I could no longer feel my lungs working and I felt like a drunk zombie.
The hospital SATS showed my blood oxygen to be 87% when awake, so I bought my own oximeter, this showed I was spending half the night asleep with a blood oxygen level of 85%.
13 months after being off beta blockers, my autonomic nervous system finally seemed to have recovered its oxygen sensing abilities, and I no longer get the low blood oxygen or breathlessness, so I wonder why my brain fog is getting so much worst, I feel as if I have had anesthetic injected into my brain.
So I just read that the body can cope with SATS of 85% because it gets the blood pressure to increase so that more of that blood reaches the organs to make up for its oxygen deficiency, so it has just occurred to me that this increasing the blood pressure is another job of my compromised Autonomic Nervous System, so if that's not working properly, my bodies mechanism for making up the oxygen shortfall will not be in operation, so the 85% SATS might be more damaging to me, than to somebody with a healthy Autonomic Nervous System?

Or to sum it up, whilst 85% SATs might be compensated for by an increased blood pressure so the health service are not too worried, might Dysautonomia stop this compensatory mechanism so our low SATs are more serious than somebody with a good ANS?

Apologies if I dont react right away to your replies, it is quite involved for me to get on this site as I always have to reset my password.

I've lived on my own now since 1979, wasn't so bad when working, but this illness has seen me off work for most of the last 16 months and now they don't want me back. Sometimes I wonder if all these symptoms are signs of my body saying enough is enough.

I actually quite liked it when I had the Ventricular Tachycardia as it meant people showing some concern for me. (The ambulance crew).

Every time I come here now my password is rejected so I have to reset it?

What has really helped reduce my acid reflux is these https://www.amazon.co.uk/Gordon-Elephant-Raiser-5-5-inch-Eligible/dp/B006ON520U/ref=sr_1_2_a_it?ie=UTF8&qid=1527801725&sr=8-2&keywords=elephants+feet&dpID=418GDCq2XfL&preST=_SY300_QL70_&dpSrc=srch

Obviously you only use a pair, they are really stable, I used to wake up in the night to reach for the Rennies, no longer, and my year long cough is almost gone.

All my GP did about my cough was to say it must be heartburn, no follow up or additional tests, even though I said how bad it was. I was prescribed Zofran, but it did absolutely nothing for me, when I told the GP she said, "well you've only been taking it for a month", I prefer the way Rennies work instantly.

I sometimes get this with both eyes moving the same, and I can stop it just by shaking my head. The impression I get is that my brain is so exhausted, that it wobbles my eyes quickly from side to side so that it doesn't have to use energy processing a detailed image, it has a little rest.

On 5/17/2018 at 12:14 PM, Pistol said:

 walking into walls etc, as if a giant magnet is pulling me to the left.

This is exactly the words I used, except I seem to be pulled to the right, I had to lean hard against the wall to feel I had counter-balanced the pull enough, though logic told me it couldn't possibly be so.

I also liken it to the feeling when you have been spun around and around and you want to fall to one side, its like this except without the dizzy spinning part, I just feel that pull to the right.

On a different but possibly related subject, I also found a way to describe how my head feels. You know the feeling when you get an injection in your gums when you go to the dentist, that numbness that spreads from the injection site?, well I always feel like I have had a really big injection in the back of my neck, sometimes the numbness travels as far as my eyes.

On 3/24/2018 at 11:53 AM, Pistol said:

I had several holters - 24 hr, 48 hr, 30 days and then a implanted loop recorder that recorded EVERYTHING for 3 years until the battery ran out. The 24 hr one was the first one and actually recorded my very first syncopal episode: Sinus tachycardia in the 150's for 3 hrs. All the others showed tachycardia, PVC's (palpitations) and occasional atrial flutter ( not related to POTS ).  The monitors are very helpful even if they do not show anything ( as long as you are symptomatic while wearing them ), because even if they are normal they help to rule out other things which helps to determine POTS. 

When your battery ran out, did they take it out?, did they give you a new one?, what was it like having it dug out? Are you in the UK?

On 4/24/2018 at 6:52 PM, whoami said:

Do you have any update on what it was in the end @Peter Charlton?

It seems to have returned to normal, just like that, no change in my eating or drinking habits, most odd.

Two of my symptoms I developed since beta blockers gave me Dysautonomia are a lack of hunger and thirst. But this has been going on a while now and I consider I drink the same amount that I used to, though I no longer have the desire too.

Maybe its the sudden arrival of warm weather that has increased my bodies need for liquids? Trouble is, one of my other symptoms is my stomach is now quite intolerant of food and more than a little fluid.

But in the last few days my urine is not just a shade darker, it looks more like Newcastle Brown Ale.

Has anyone else experienced this?

4 hours ago, bombsh3ll said:

Blimey that looks like a nasty ventricular tachycardia! As I understand it, and I'm no cardiologist, beta blockers work on the sinoatrial node which controls HR when a person is in a normal or at least atrially generated rhythm. What was your underlying diagnosis?

Right Ventricular Outflow Tract monomorphic VT, sustained, I was getting it all day and every day as I couldn't take beta blockers, it would go away at night until the last time when after 12 hours of a 150 BPm VT, I thought I better call an ambulance!, they wouldn't let me go home until they ablated it.

So I saw my cardiologist today, bearing in mind it has been so hard to get anybody in the NHS to listen to me that Bisoprolol gave me Dysautonomia, and it didn't go away when I stopped taking it, he had apologised before and he did so again for previously having said it must be anxiety. Well today he informed me that he mentioned me to another of his patients, who has had exactly the same negative experience with Bisoprolol as I have. I cannot wait to tell the GP who barked at me "you wont find a doctor in the country who will admit Beta blockers are to blame".

11 hours ago, bombsh3ll said:

What was it that led to you being prescribed the beta blocker in the first place? 

B x

6 hours ago, bombsh3ll said:

Hi Peter,

I worry too about the long term effects of chronic cerebral hypoperfusion - it can't be good! 

However as a doctor myself I would add that although there is an association between OH and dementia, it does not prove a) that one causes or leads to the other or b.) the direction of causality. For example some degenerative diseases seen in elderly people have both cognitive decline and OH as features. 

It sounds as if your problem stemmed from an event that you can identify, that is not related to degenerative disease or dementia. 

Also on the plus side for you, if your blood pressure drops when you stand up there are a number of effective treatments available for this aimed at raising BP. Have you tried any vasoconstricting meds yet?

B x

 

Hi B, Another of the symptoms I developed as soon as they put me on Bisoprolol, (to which I soon developed anaphylactic shock), was the feeling my lungs no longer worked automatically, and I had to remember to breathe, this becomes particularly problematic when I am asleep, see my graph.

As for my blood pressure, countless times during my investigations it was described as "perfect", after the Bisoprolol business a year ago, my blood pressure is now too high, generally around 147 over 96, so I dont think I should make this any higher. 

I would also worry about taking vasocontrictors as yet another of the many symptoms I developed from the day I took Bisoprolol is a horrendous heartburn that can come and go just like that, but does not respond at all to prescription ant-acids. I am wondering therefore if my ANS is causing coronary vessel spasm as I took the following ecg when such was occurring. You see how the T waves are up to 3 times higher than the proceeding R waves?,  Well I read on cardiologist sites, "Be suspicious of LAD occlusion when the T wave towers over the R wave, and would guess a blockage is a blockage wither caused by a build up of plaque or a CAS constricted artery? So I would be concerned about constricting them further until this has been looked into.

22 hours ago, WinterSown said:

If you read the study they've yet to determine that it always happens.  The fog can be brutal at times but it can and does lift. I've dealt with it in my own way and have improved a lot just by studying and being creative. Talk to your neuro about setting up a program ton help lessen the fog and do more.

We will determine whether the disease process always damages neurons in the brain (resulting in a movement disorder and/or signs of dementia) or can, in certain cases, remain confined to the autonomic nerves outside the brain.

 

Thanks. Any idea what causes the possible damage?, is it lack of oxygen as the blood pressure falls or something else?. I have had mine a year now and it seems to be getting worst. What creative thing did you do that helped?

Have you tried increasing the refresh rate?

https://www.quickonlinetips.com/archives/2005/03/change-refresh-rate-of-your-monitor-avoid-flickers-and-headaches/

All my Dysautonomia symptoms started from the day they put me on Bisoprolol beta blockers for Ventricular Tachycardia.

Its hard for me to know which symptoms are a result of my heart or a result of my Dysautonomia.

The very worst symptom is the brain fog that can make me feel like I am slightly drunk and have to try hard to walk in a straight line.

When I was assessed at the Neurology hospital they did an Autonomic Blood Pressure test which saw my Systolic fall by 20 and my Diastolic fall by 13 which I understand is well within the criteria for Orthostatic Hypotension.

Then yesterday I found this:- https://med.nyu.edu/neurology/dysautonomia-center/research-trials/current-research/orthostatic-hypotension

I was somewhat alarmed to read the line:- "  We will determine whether the disease process always damages neurons in the brain (resulting in a movement disorder and/or signs of dementia) "

So, does Orthostatic Hypotension "always" give you brain damage?, is this why I feel I have brain damage?

20 hours ago, Bluebonnet08 said:

Peter- where did you buy that ECG waveform?  How do you interpret it?

 

I had these strange feelings for a year before somebody said I really should see a doctor as it might be my heart. So I did, two years later the NHS still hadn't found anything as the feelings never co-incided with their 24 hour holter monitor, then I read you can buy your own ECG so I did, that way I could record what was happening as I got the symptoms. Turned out I had Ventricular Tachycardia so maybe the best £150 I ever spent.

I bought it from Amazon, the model is called a "Prince 180B". Its interpretations are rubbish, but the actual graph absolutely matches the ECG graphs in the ambulance rides and my cardiologist has said these graphs are show him are incredibly useful.

Printing them off is a little convoluted, I have to download from the machine to my computer, the programme is supplied, but to print, I have to chose "save as an XPS document" when it says to chose printer, I then have to use an free online programme to convert to JPEG, then I can print that off.

As for interpretation, there are plenty of instructions on the net to show you what an normal ECG should look like, then you could search for say  "Ectopic beat ECG" in images, and see what one matches yours. For instance, I just searched PVCs ectopic beats on images, and see a match for my previous image, though I get as many PVCs as normal heartbeats, you will see a normal heart beat on the first image I just found on the net, until the sixth beat which is a PVC, though of course its your doctor who will give you a definitive diagnosis. 

The other picture called My VTwas what my heart beat looked like when I was having Ventricular Tachycardia.   

I have been noticing recently, whilst I am asleep, my heart rate is up and down constantly, lowest I have seen is 27, last night it was 35 lowest, the highest was something over 135 as the recording settings stopped at 135.

Anybody else get this?

Its hard for me to know what is "Autonomic Instability", and what is heart failure.

Here are mine from last night.

Eating is making me feel so desperately ill, I have given up breakfast as it ruins my day,  take me hours after eating for my heart to calm down enough so I can sleep. feels like little explosions going off in me and my heart actually hurts.

11 hours ago, Pistol said:

I am surprised you only use 1 l/min, most people start with 2 l/min. Maybe if you go up to that your o2 level at night will improve more?

This machine, whilst claiming to have adjustable oxygen concentration and adjustable flow rate, actually has a set oxygen rate of 90% at one litre a minute. When you increase the flow rate, you are just adding room air to the 90% litre of oxygen, and diluting it, so 1 l/min delivers exactly the same amount of oxygen as 2 l/min but with a useless extra litre of ordinary air blowing up your nose which seems pointless and less comfortable. 

This is why I was interested to see the results others got at a setting of 1 litre a minute at 90% 

I was a little disappointing to find that on its 90% pure oxygen setting at 1 litre a minute, it only made my blood oxygen go up between 1 and 3 % and I was wondering what percentage yours goes up by, wondering if this machine is a little too cheap and I should send it back for a better one?

Having said that, the last two night I have used it, resulted in the deepest sleep I have had since my troubles began last year, my overnight pulse is lower and much more stable, I also find that my many ectopic heartbeats and palpitations have cut down noticeably.  Brain fog and dizzyness still remain though.

Whilst I have seen my blood oxygen level as high as 99%, generally when rel;axing, it is around 92 and when I am asleep it spends half the night at 85%

As the NHS are so very impotent now, I went pro-active and bought my own oxygen concentrator. I am a little disappointed though to find that despite its claim to produce 90% pure oxygen, my blood oxygen only goes up 1 to 3 percent when I use it.

Does anybody else use one of these machines?