Peter Charlton

Might this be Coronary Artery Spasm also known as Prinzmetal Angina?

My understanding is that the Autonomic Nervous System also controls vascular smooth muscle contraction, in Dysautonomia, this can go too far so that your arteries feeding blood to your heart constrict too much, therefore restricting blood flow and causing angina like symptoms even when your heart is structurally clear.  Often occurring when relaxed rather than like normal angina which occurs due to exercise.

I believe I get this, its a different heartburn feeling, not so much the acid burning feeling but a hard squeezing pressure. I have my own little ECG that shows when this happens my T waves which should be a little bump after the normal spike of the R wave, actually tower over the proceeding R wave. Now I have had two cardiologists claim this is fine, but a cardiologist on the net says "Be suspicious of LAD occlusion when the T wave towers over the R wave. (LAD occlusion being a blocking of a vascular artery via a different mechanism than CAS, but its still a blockage).  So I am not always convinced every cardiologist who looks at your ECG when this is occurring, and says nothing is wrong, actually knows everything there is to now about cardiology.    

My GP has referred me to a sleep apnea clinic for my feeling of being drunk all the time and balance problems, after I showed her my overnight blood oxygen level occasionally spending half the night at 85%. So I have been recording my overnight SATs last couple of weeks so I can show them that it isnt always that low. I did notice though my heart rate seems to be all over the place when asleep, highest was 164bpm, lowest was 27 . Last night I saw it drop to a low of 30bmp. 

This heart rate variablility, Is it a Dysautonomia thing or simply a heart issue? 

I recently bought a set of bed raisers, then only used two at the head end to bring my bed to a tilt, really helps with the heartburn for me.

Because of my breathlessness and hospital oxygen monitor showing my oxygen at 87% when awake even though my lungs are good and sometimes oxygen is 99%, so I bought my own oxygen monitor that you wear all night.

Occasionally it goes to an average of 85% which I understand is quite dangerous, should be between 95 and 100%, 88% is a red line and 15 minute medical emergency.

I had a nightmare I was suffocating but managed to wake up and then remember to breathe. I think that is what happens to us, we forget to breathe. The Autonomic Nervous System has blood oxygen monitors that tell our lungs to work more if oxygen gets low whilst we are asleep, and of course, if our ANS isnt working properly!

I was referred for a sleep apnea clinic but they just gave me the same monitor I already have and said there was nothing wrong with me because on the night I used their machine, my average was 90% which it tends to be half the time when I test it, the doctor didnt want to listen when I said but sometimes it gets a lower average and sometimes its ok. Fortunately my GP is concerned and getting a second opinion.

This is one of my overnight oxygen graphs I took.

7 hours ago, Bluebonnet08 said:

Interesting - I was just reading about this on one of the CFS forums.  The poster said she had the MTHFR mutation and that is why her doctor thought she was deficient.  She now takes L-Methyfolate and B-12 shots and she said it has helped a lot with her symptoms.  I would be interested to hear if it helps you as well.  

PPIs can definitely effect stomach acid and your ability to absorb nutrients.  They are linked to a lot of things including kidney disease, cognitive decline.. I used to take them for awhile, but stopped.  My heartburn was being caused by a birth control pill, so it eventually subsided.  Maybe probiotics could help?  

 

"Cognitive decline"?, that would explain a lot! The lack of Folic B9 causes the red blood cells to be less efficient at carrying around oxygen, which might help explain why with good lungs, my oxygen sats are so low, adding Rennies to that makes my outlook look bleak.

I might ask my doctor if Folate can be injected, looking at the amount of green vegetables one has to eat a day for your daily B9 allowance wouldn't give me much time to do anything else in life!

Do probiotics work?, I tried them in the past and considered them snake oil, maybe such things are only effective if there is something wrong with you so you have a deficiency that they fulfill?

I finally found a GP at my practice who is pro-active unlike all the other GPs who like to fob me off with "Anxiety" and the like, so she arranged a simple blood test to which I just received a call to say I was deficient in Folate.

I do see such can account for many of my symptoms, brain fog and confusion due to low blood oxygen levels, fatigue, pins and needles in my feet, tachycardia.

I also see that anti-acids and the PPI I was proscribed can lower stomach acid and so inhibit the stomachs ability to absorb B12 which I shouldn't be deficient in as I eat enough meat and dairy products, and have B tablets.

Is Folate, B9 also inhibited by heartburn medicines?

If so, if anyone has run into this, what did you do to alleviate heartburn?

A month without a bath!

As is the way, the two times I wore a 24 hour one, I didn't get any symptoms, so was told nothing was wrong with me!

Due to the symptoms getting worst, I found you can buy your own ECG, so I bought a Prince 180B, what a fantastic thing it is, I will attach a picture of one of its readouts, the graphs look exactly the same as the ones in the ambulance rides I got, and my cardiologists tell me these are useful.

I also now have a Reveal Linq implanted ecg monitor, but I tend to use my ecg before I trigger my Reveal linq to record so I don't waste their time showing them my daily minor ectopics. 

2 hours ago, Katherine said:

Peter, any diagnosis yet?  I had the tilt table and other autonomic testing done and was diagnosed with orthostatic intolerance.  I have the same symptoms as you do.  Ever find out why your feet hurt so badly?  I can barely walk in the morning and when I've been sitting during the day.  Almost unbearable.

 

Hi Katherine. Still not even been given an appointment. I presumed the burning feet were because of my standing up all day job, but now I do not work and find even spending two days in bed, the feet are still on fire so presume it must be the nerves.

I am awake at this late hour because this evening I have been sickeningly unwell, but without being able to say what it is. My heart palpitations were no worst than usual, it was like an "I should be in hospital" level of feeling ill, is passing now though so will be able to sleep soon.

This is something I too get, and as with all my Dysautonomia symptoms, it started when they gave me beta blockers so it wasn't a gradual thing, it was sudden.

I first described it as if I could no longer feel my lungs working, or my breathing was no longer automatic, that I had to think about it and when busy talking, I would forget to breathe.

My cardiologist did lung function tests and initially claimed it must be anxiety as my lung function was good. I had to inform him about Autonomic Nephropathy to get him to retract the anxiety nonsense.

I take my sats, even when connected to the hospital machine, I could see it about 87% whilst still awake, but I have also seen my oxygen reach 99%. What is starange is that I get the breathless, air hunger, when my oxygen level is high, not when it is too low.

I have a theory that it is yet another symptom of Dysautonomia in that  the Autonomic Nervous System has receptors that detect the amount of oxygen in our blood, and get our lungs and heart to automatically compensate, even whilst we are unaware and asleep. When this goes wrong, we get false messages telling us we need more oxygen, even when we dont.

On 8/26/2013 at 4:38 PM, issie said:

Yes, expensive hospital stay. Triggered by a mast cell degranulation event. Nitroglycerin helped. They thought it was a heart attack, but no heart muscle damage. Was a MCAS eposiode. Called Kounis Syndrome.

Issie

This is interesting, Kounis Syndrome. They found I had mid LAD disease when they did an MRI heart scan.

I was found to have had an anaphylactic  allergy to Bisroprolol beta blocker that brought my heart rate down extremely low so that I was barely conscious. 

Though I have been off beta blockers for ten months now, all the symptoms that I got from the day I first took them remain, including horrible pressure pain that I presumed to be a form of heart burn, but travels from the centre of my sternum to the heart.

Do you know if this syndrome can be started by am allergy to a medicine, yet remain when taken off the drug?

I still get massive ventricular ectopics, but when I get this heartburn feeling, I took an ecg and found I got huge "T" waves which are only supposed to be a third of the preceding "R" wave, not tower above it. 

54 minutes ago, Lainy said:

I was just diagnosed a few days ago. My cardiologist wrote down "Dysautonomic" on a business card and told me to do my own research at home after he'd explained the general idea. He bet me that I'd identify with all the symptoms I'd find listed... well he won that bet!

For the first time in years, I know I'm not crazy. It's not in my head. And I'm not being an "oversensitive female"(direct quote from another dr.!!)

Someone wrote earlier that they read through that list and just cried knowing they weren't alone. I'm not an easy cryer. But the past couple days have been world-changing for me and I admit...I cried too.

Hi Lainy, can I ask about your Dysautonomia being related to seeing a cardiologist please?

I am under a cardiologist or two for Ventricular Tachycardia and it was I having to inform the cardiologist that all the symptoms I suddenly got as soon as they put me on beta-blockers, were not, "anxiety" but due to beta blockers disrupting the autonomic nervous system by blocking adrenaline receptors.  Thankfully he considered I was probably right and apologised for having said anxiety, got my GP to refer me, and I have right away been given an assessment of "Autonomic Instability" from the neurologist.

I don't have POTs, but am too ill with the other symptoms to hold onto my job. I only feel OK when lying in bed if you dont count the feeling I have of having been beaten on the soles of my feet and my tingling legs seem to be getting further up by the day.

I had my Autonomic Neurology assessment just a couple of weeks back. Told I have Autonomic Instability whatever that means.  An Autonomic Blood Pressure test saw my Diastolic go down by 13 points when I stood up for the three minutes, so presume that points to OH.

I am now awaiting appointments for numerous other tests including a tilt table test. My only worry is that as POTs is the most well known of the symptoms, I do hope they don't just look for that and not for the different but debilitating other symptoms I do have.   

He does some great interactive live Facebook videos as well where you post questions that he then reads out and answers. He has also replied to private messaging questions. Lovely man.

So I had my assessment at the Autonomic Neurology department of the UCLH yesterday were I presume it was my 19 point fall in blood pressure from sitting to standing after three minutes that has earned me further investigation.

A lot to take in so I might be wrong in this particular test I was told I would be getting along with many others, something involving a chocolate milkshake?

Whats this all about?

Whilst I am here, another symptom that I got from the day they put me on Bisoprolol beta blockers, was that I could no longer feel my lungs working. Now I recall from coming around from General anesthetic in recent years being in a blind panic when the nurses brought me round because I could not feel my lungs and thought I was suffocating. Could this be related?, I never used to feel like this after general anesthetic.  

I forget to breathe in my sleep, then have nightmares of suffocating. I even bought an oximeter which confirms half the night my oxygen level is 85%. The NHS sleep apnea specialist my GP sent me to puts the low readings down to my having a "sweaty finger".

23 hours ago, WinterSown said:

I was on Atenolol, then switched to carvedilol that has now been cut in half. I have felt no difference with any of the drug changes. Good luck with the neuro. I love mine, she helped me build my own educational and creative therapy program to assist the short term memory, dissociation and fog problems. I went through an assortment of brain scans and memory/logic tests so they would know exactly where the problem areas were prior to setting up the neuro therapy.  Memory testing can take up to four hours but it's worth it as they identify your cognitive deficits and strengths. I went to Cushings Institute in Great Neck, NY for the testing. Next time I see the neuro I'll be bringing up that I've noticed sensory overload is now also triggering for and dissociation--these things wane and then swing to the forefront to wane again. I recently went off all supplements and now get my nutrients entirely from the food I eat and drink. I started to have more clarity with a few days of eating smarter.

A shame they didnt memory test me prior so they can compare my cognitive functions to what it is now. My main problem though is I feel drunk, as in not being able to walk straight, losing inhibitions, slow to take in my surroundings when I turn my head around. Looking up and down stairs is the most confusing. 

As soon as I was put on Bisoprolol beta blocker, I said it made me feel like a drunk zombie. They took me off beta blockers 11 months ago, but I still feel like a drunk zombie, I never recovered, I see a neurologist next Tuesday. I have found lots of stuff from professional health studies linking beta blockers to cognitive impairment.

I too found SSRIs completely removed any anxiety, not that I had much, I had been prescribed them for depression for which they had no effect, but I noticed they made me lose all inhibitions and ride my motorcycle like I was an immortal.

I get them every day, especially after eating. I had Ventricular Tachycardia that was cured by an ablation so just consider this to be a harmless lessor form.  Bigeminy  means that every other beat is an ectopic. Here is a picture of mine, though these are P Ventricular T rather than your P Atrial Ts. 

I developed a heart arrhythmia, Ventricular Tachycardia.

Before it was brought under control with an ablation, they fed me beta blockers for a while, whilst this didnt give me POTS, it has given me many other symptoms of Dysautonomia, specifically ones showing an imbalance towards the sympathetic side as if being made to stop taking beta blockers cold turkey, swung my ANS balance too far in the other direction. Prior to the day I took beta blockers, I had no AN symptoms at all. I have been off them since last March.

The battle now is to escape the anxiety diagnosis a cardiologist decided I must have developed the same day he gave me beta-blockers, a diagnosis every other doctor is keen to use even though I now have a letter on my notes from a psychologist saying no way do I have any form of anxiety.  

Indeed, my cardiologist decided all the symptoms I developed as soon as they put me on the Beta Blocker Bisoprolol, was due to "anxiety", he kindly informed my work and GP of his most illogical notion. The GPs loved this diagnosis, meant they could just laugh at my complaints and dismiss them.

The psychologist  was far from amused however when she met me and said no way do I have anxiety and so wrote to my GPs telling them they had better sort out my very real physical symptoms.  

My blood pressure seems to fluctuate for no apparent reason in the course of minutes. 120/81 then 147/85 then 128/87

13 hours ago, Davidinaz said:

My heart is always fluctuating like 90 then 96 then 104 then 87 it does this in seconds continually

Does anyone else's do this please let me know is terrifying.

Yes, and its one of the factors that has stopped my cardiologist from using the usual "its anxiety" excuse and arranged for me to be referred to a Neurologist.

The lower blue graph is heart rate variability, the better one is me just sitting down. The more extreme one is as a passenger in a car journey, with a spell in the middle walking very gently around a museum. Though the part that attaches to my finger is certainly a better grip than the ones they use in hospital, I will concede that movement can give false readings, though being aware of this, I was very careful to keep this hand still.

9 hours ago, whoami said:

I have trouble understanding. How can you not worry about your heart? Did you come terms with it?

 

When I compare myself to others, I feel weak. Deprived of what I could do. Death scares me a lot. Pain even more. Do you not think that sometimes your heart could stop with all those palpitations?

 

I'm sorry if I'm being too personal. Let me know if you don't want to talk about it.

 

Gabriel

The Cardiologist said it was nothing to worry about, guess he knows, my outlook on life is my worrying wont make it better anyway. Thats at its present worst, and it goes after a few hours, generally after a meal its more like this one, with an ectopic every fourth of fifth beat. I feel a bit strange but no real symptoms from the heart, so dont worry about it, I am a bit more concerned about my low blood oxygen level to be honest, I am seeing a sleep apnea clinic next week so will see what they have to say.

8 hours ago, whoami said:

How do you get a report like that with your O2 meter? I just ordered the CMS DL50 and i don't see an option to connect it through usb and get the stats.

I am not familiar with the CMS DL50, on my CMS 50F, you get a CD that puts a programme on your computer, the device has a scroll down menu and you hold down the record button, then press yes. To download the data onto your computer, you connect the USB which is also the charger, open the green "SPO2 Assistant Review",  click on the "Not Active" box, a new window opens up, you scroll down on the device to the upload option, which then goes on your computer. To start with I then had trouble in that I couldnt work out how to save it and it wouldnt print. I then found the way to do it is click print, but select the XPS document as your printer, that then saves to your computer rather than printing. Then find an online covert XPS to JPEG programme, change to JPEG, you can then print or post.