MY BP & heart rate are erratic. my BP has been 195/110 and 110/60 all readings at rest, my norm is 140/90. I faint a lot when out, I have had tests such as tilt table, 6 day heart monitor etc. all negative. My hear rate is normally about 80 but I went through several weeks period where it was dropping to 40 but that was several months ago. I've had palpitations at night that keep me awake so when I suspect something I test with my home BP monitor, night before at 2am it was 115/65-86, last night it was 128/82-40. Every time I eat I become exhausted, if its cooked I will sweat, if its ice cream for afters I will go from hot & sweaty to very cold and its all over. Last few weeks I have a constant dull pain left hand side front and back, almost just below shoulder blade. Hypertension clinic discharged me with high BP & not to take any BP meds & in letter to GP says previous postural hypotension, syncopal/pre-syncpal episodes, previous stroke and 2 possible TIA's or seizures.
Needless to say I'm at a loss.
Written by
arnieatmo
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It all sounds very complicated, and you must be so worried.
Only suggestion I have is to contact the medical-type person you trust most (GP, Cardiac liaison nurse, Consultant........) with a list of questions, and get them answered.
I’d ask what they think has happened to me, and what can I do to get the best out of it.
I received appt with cardiology dept this morn :). My weight is consistent 16st, I drink as much as I can & healthy diet other than the cravings for sugar & carbs which overwhelm me most days. I cannot exercise other than weights while in bed due to ME FM & Back issues, I have been taking daily readings but clinic said they average out ok, bloods all been tested. Not noticed any allergies but I do sweat & become extremely exhausted after eating anything.
Yesterday my systolic readings were between 100 & 165 and HR between 42 & 100 at rest.
Sugar is a very powerful drug that will slowly destroy you. If you have a look at the diabetes.org site they have some fairly horrible pictures of what it will do to your eyes and limbs before it leaves you in a wheelchair. You can take pills, but I have friends who been told that they are pre diabetic or full blown diabetic ( type2). The fastest recovery was by the one who got the frighteners put on him by his doctor.
He went on a very strict 800 calories a day diet ,under medical supervision,( as it changes the effects of drugs that you take). His body fat melted away and his sugar levels came back to normal levels. He is now out and about again, like a new man. The other took the pills. He didn't change his diet, didn't lose weight, and is still pre-diabetic and heading slowly but surely in the wrong direction. Sad to watch .
Carrots, celery and apples to crunch. No easy answers, no sugar, no bread, no cake and biscuits. It will take 6 weeks before your weight starts to change because your insulin system has to re-establish itself, but after that you should start to see noticeable changes.
I'm not pre-diabetic, I eat rabbit food & everything else that's good for me. I will never give up my treats, short of my only comfort in life. There is nothing wrong with my sugar levels, diabetes is my worst nightmare, I am not going there.
Not good. Looks like you are going to have to follow a KETO type diet to do it the hard way, At least if you can get your weight down it will ease the pressure on your joints, every stone you can pull off equals 7 x 2 llb bags of sugar off your back.
If you can get 2 stones off that is the equivalent of a 28 llb backpack, lose 3 stones and you have got rid of a 42 llb pack. Your back will definitely thank you.
Perserverance and determination are going to have to be your watchwords. It will be a grinding task, and it will take time, but as the weight comes off you may be able to move a bit more, which will make your life better...
With the greatest respect, you do know a lot about yourself and what your problem IS NOT, how then do you think anyone here can assist you, given your replies to date.
If you seek support and how to live with what you have, then this is for you, but using for a diagnosis or advice on diagnosis is not going to be the place. This is in no way a message of disinterest, however asking such detailed questions with intricate detail of symptoms puts a great deal of responsibility on the folk that would normally rust to help and perhaps why "we" have not come up with something that could help you.
If your doctor is usually on holiday perhaps you ought to think of A - changing doctor or B changing surgeries but before that you will have to decide whether it is in your best interest to do so, given they have been dealing with you for some time.
Which ever it is, you will always have choices when it comes to your health and you do have power to choose. I am sorry the answers you have had are not helpful but please keep updating your doctor and recording your readings for their perusal
One piece of information would have been helpful if you had mentioned your height?
5'11" and I was hoping that someone might have seen a similarity in my issues with theirs that we could both relate to and possibly come up with some ideas.
I assumed wrongly and it appears that I'm asking in the wrong place. No offence to any one of the replies but if it was a simple case of diet, fluid intake & exercise, I wouldn't be here.
Sorry, Arnie, your height/weight puts you at a BMI of over 31, which is classed as obese. The best thing you can do for yourself is to start gentle exercise and sort your eating out.
You aren’t diabetic now, but those overwhelming sugar and carb cravings will take you there.
Reducing your weight and increasing your activity levels will not only stave off horrors like heart issues/diabetes but will also help your ME/CFS.
Weight training will not achieve this.
You were asking for people with similar issues - no, most of us had gone past the point you’re at, and had already skipped into the scary stuff.
Advice? Again, lots has been offered, and the bad news is they’re the ONLY ways to combat what you’re currently experiencing and possibly heading towards.
I thought smoking, eating pretty much everything I liked, drinking more alcohol than is advised and avoiding any form of exercise wouldn’t cause me problems. My heart attack was only the start of me discovering the extent of damage I had caused. The fun news keeps on coming, and none of it is reversible.
I understand, my weight is reducing slowly & weight is mainly down to my meds as I was 14st before taking certain meds. I have withdrawn painfully from most of these, time will tell. I can lose weight a lot faster if I quit my meds, at one stage in the past, I can't remember when but before the cocktails I lost 2st in very short space of time and consultants put it down to my pain levels.
I can't do gentle exercise, I've tried everything, I get post exertion malaise on top of the pain from the 6 fractures in my lower spine, degenerating discs & crumbling vertebrae, carrying a loaf of bread is extremely painful as is any kind of aerobics.
I can lay on my back in bed and lift weights. I spent a lot of money on a cross trainer, I've attempted everything over & over
That could be the cause of sweating on eating. I had a Tumour on my Parotid removed and the Maxio Dept constantly checked I wasn't sweating to much when eating . It's a classic once again well spotted
How was the tumour discovered - did you go in to the GP with the sweating symptom? Did you have any other symptoms - elevated BP, heart rate, facial-neck pain, vertigo? Apparently nerve damage or a tumour to the parotid isn't always suspected even with 'classic' symptoms.
My late husband (consultant neurosurgeon) used to find them after referrals from, as he put it, 'so-calleds who should have known better given the symptoms!' (I miss him, he had such a way of expressing himself ). He used to say tumours are palpable, nerve damage isn't but symptoms are the same and an ENT should have investigated better before automatically referring on.
I just noticed a small lump in the dip just behind, and at the bottom of my ear. We had a young Australian getting experience in our GP practice who checked it out and referred me to the Max Fac dept.
I then had a Fine Needle Aspiration and they just said lets get it out. Turned out benign, but checked every year for 10 years, by all accounts if they come back they aren't benign and are very vicious !!
I need to stress here I'm not medically trained - but given your symptoms it is something that might want having a look at. Please update us when you find out yes/no on the parotid potential connection, and whatever happens.
Best to you - having a 'mystery illness' is not pleasant. I remarried several years after losing my husband and my 'new' (we're coming up on 9 years next week so I'm not sure he's all that new ) husband had a mystery illness for decades. He was finally diagnosed a few years ago with coeliac disease and having that diagnosis has been life-changing. But it took a long time, and frankly a lot of pushing the medics.
Again, best to you, I hope they find out whatever the problem is soon-as.
Sillyfoggy has put it so well, I need not reply in depth. My point was you were asking for advice and when people tried, you were telling us what was not wrong and as said, diagnosis is out of our remit. The very first thing a cardiologist or heart advisor will advice you is about exercise and weight loss and to achieve a BMI and to take responsibility for the things YOU can change to make YOU better. Anyway, I do wish you my best wishes and hope you will find you answers soon
please see my reply to Sillyfoggy & sorry but I disagree re comments ... by taking responsibility and I can do this & I can do that! I can't, and it doesn't help anybody with MECFS when they hear this type of comment. You're not to know though & I really appreciate you and anyone else trying to help.
As flipper below says "We can control diet and exercise. your symptoms seem to revolve around eating" I would prefer that people do not spout off on what they know very little about, they do not help at all but in fact make matters worse.
This will be my last post in this forum due to being labelled a fat lazy ignorant b'strd!
I am sorry you feel our advice was so unhelpful, however this is a place for people with heart conditions and the effects of medication etc and relies upon personal experiences as much as anything else. Only a very misguided or frightened or desperate person would come here and hope for a diagnosis.
My second point refers to your medical history - It may be a fault but we are all human and do take most things at face value and "a post is a post" with folk responding if they think they can help. I do not believe (I could be very wrong) many of us would go and interrogate your personal page with a potted history of your history - a failing maybe but not everyone would fill this information out anyway.
Given all this, everyone has tried to respond with good will and no one has even suggested you are any of the things you suggest. However, good will or not, we can only respond to what you say and it is clear you have many firm conclusions and a raised knowledge of your illnesses and symptoms and some very specific opinions of the answers given. Since these comments appear to be so entrenched I wonder whether any help page would actually be able to meet your needs but would suggest you continue to seek help through any of the NHS pages if you feel that is what you need.
My only suggestion as one human to another is never give in and try and get to a doctor that understands. If that means changing doctors then so be it. Depression has, as yet not been considered and would find it completely understandable if you are affected by this and wonder if discussing that might help?
I am very sorry to say that I personally have heard so many people, young and old, say to me "I can't do that" and I have to say to you that I read can't as won't. Can't is just a very negative word for me because I too could have said that and just curled up and given up. As they say - It's always up to you.
My final comment goes to perception and the photograph you chose to use. That photograph in no way reflects your health and "could" influence replies since seeing a well developed man in a singlet in the sitting position as the person you describe today. I wish you luck and hope you find what you seek. No one here is uncaring or vindictive or rude I assure you. We only understand what we all suffer from that brings us together as a group.
I wasn’t aware CFS/ME caused fractures, actually my mum has that diagnosis and fractures aren’t a feature.
I am confused how you can do weight training in bed but lifting a loaf of bread is too painful.
I’m not clear why you’re monitoring your heart rate if you’re bed bound, I would imagine in that scenario there are many HCP involved with your care and any concerns will be picked up early.
I agree. Can’t and won’t are two different mindsets. Only you can choose which you want to be.
When I started with my personal trainer 30 seconds of squats had me in bits - it HURT, I hated it, I wanted to avoid it.
5 weeks on, I’m up to 3 minutes (still grumbling because it hurts!) but my butt (I had to) and the scales say it’s a good thing, and every part of life is getting a bit easier, and a bit more fun.
I can relate to how you feel arnieatmo...I have been under investigation for 7 months with quite similar symptoms. High BP/low BP, slow HR, fast HR, pre syncope, syncope.
Falsely diagnosed with profound Posterial Hypertension after fainting on a tilt test. Cardiologist admitted this had been a red herring and I was referred into neurology for a diagnosis for my ataxia style walk.
Are you actually fainting? As on my medical records syncope features greatly, but it describes my collapsing type drunk ataxia walk, not fainting at all.
Neurology apart from my walk, say I don't fit their criteria and I am now being drawn into the rheumatology department for more investigations
I feel deranged, after being pulled from pillar to post I wrote down every symptom I experienced and gave it to my GP, some things seemed quite random, Raynaud's, alopecia and heart issues alongside ataxia gait to me, didn't seem linked but they rang alarm bells to my GP.
I know how you feel, yes I am fainting & I do ataxia walk. I really don't know where I am but I will get appt with cardio when they can fit me in and my only other route at present is the pain clinic again end of month. I'm 99% certain everything revolves around an overloaded central nervous system, in a constant state of fight or flight for so long that's its caused untold damage. Neurology rejects me one minute & then next will say you have neurological issues & nerve damage, depends on who you see!
The problem is that even with all the notes we take, the docs just will not look at you in whole so there's no chance of finding a connection, but I will keep on pushing. My GP says I'm a difficult case with complex issues and shrugs! LOL, useless.
The rheumatologist is your best bet for now, at least I hope & pray it is for you.
It's mind blowing when all medical people ever say is "you're a medical mystery or very intriguing"
Unfortunately we are not in the quick fix category and seemingly sit in the medical science arena, until that one person comes along and says "Yes seen this issue before, I know what it is"
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). He used to say tumours are palpable, nerve damage isn't but symptoms are the same and an ENT should have investigated better before automatically referring on. 
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