Coming up to Christmas yet nothing has changed, my "health" remains as dire as ever regardless of my GP's best efforts....
Since mid September I've spent most of my days on my bed with extreme fatigue, and feeling dreadful...I have profuse random sweats, dizziness, confusion and my pulse is fairly slow, 50-60 for the most part yet over his period my GP has been reducing my BB dose.
Trying to see consultant, but I have to wait... don't have an EP, nothing local!
Had a thought this morning...and wondered if my extreme rubbish state of health could be down to SSS...my symptoms match exactly, but of course, can't call a GP on the weekend and refuse to go to A&E unless I dramatically get worse...been existing this way for well over three months now...!
Has anyone with SSS suffered with months of extreme fatigue and being totally unable to to much more than the basics to stay alive?
Again I'm curious, since the medical profession seem unable to diagnose anything and I'm afraid I will give out before they make a sensible and CORRECT decision about what's happening to me, so if you've gone through months of this, as I am now...please let me know how you've got on, I'm really at my wits ends and also sick with worry.
Thank you so much,
Delle x
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Delle
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Sorry you are feeling so unwell and so low I can't comment on the SSS but can say that tacharrythmias and even hours of ectopic beats leave me feeling very exhausted. I have learned to adapt to the tiredness as I had to for work but it did get easier for me and I have adjusted things I do to try and accomodate the tiredness. Sorry I can't be more helpful but just wanted to send some support and a cyber hug to you. xxxx
Ps. My heart also goes slow at times. I used to be concerned about SSS (tachybrady syndrome as it is now called). My EP advised me if I am not passing out he wouldn't be worried. Another general consultant had mentioned I may have it but my EP dismissed this..I still wonder sometimes xx
I had a pulse of 55 or below with occasional pauses when I was on Diltiazem and felt lethargic including brain fog but not nearly as bad as you describe. Has your GP ruled other conditions out? I was treated for IBS for years until I became ill enough for emergency admission to hospital with a perforated bowel caused by diverticulitis. I did have attacks of sweating or else felt very cold but that was because I had an undiagnosed infection.
Perhaps people here who are interested in diet, intolerance etc may have some helpful suggestions. I know it is hard to think laterally when you feel so poorly, just hope you find an answer soon.
Thank you Buffafly...yes other conditions rules out...fully checked with CT scans etc, I've been this poorly since September, I had my first big AF event on 10 June....was okay until September but since then...I'm barley living...GP has been perplexed by it and suggested I continue to lie on my bed, since I can do nothing else...only today did I think SSS may be in the frame...I have no life ATM, yes I breathe, feed and love my babies..(cats) and feed myself but that's it!
Very much like you but mine due to AF and a clot in my heart. You are right no one worries so we must not be at deaths door (though most times it feels like it) Will be able to see my EP in clinic, but other than having no life the medical profession is not worried as you are alive. I understand where you are coming from as you want "quality" too - and you don`t have it. I have just come to the conclusion that I have deteriorated with age while I wasn`t looking. I manage to live and look after myself but just pop out for my shopping in little bites otherwise it flattens me four hours. See if you can accept how you are and adjust your life (ha,ha!) accordingly and grow old gracefully. I do this but grudgingly as I do not feel that old! Only when my heart plays up and then I feel ninety!
Please don`t feel you are on your own - you are not. Come here when it all gets too much and we will all give you cyber hugs. Count the love you receive from your companions and feel happy.
Thank you Dear Cali111 for sharing your pretty much identical situation...Since my AF was thrust upon in June...16 hours in resus and a week in hospital, I'm still trying to learn the ropes....I was good when discharged, but have gone down since one of my boys escaped in the middle of the night from a locked up house in July...he's a house and garden cat so was lost...friends found him two weeks later,but it almost killed me losing him...then mid September this complete debility descending and I've been housebound for the most part...no housework done, just feeding my boys and me and keeping myself clean.
We sound very similar, and although I hate that you feel this way too, it's comforting to know I'm not alone...thank you so much for posting x
Sounds as we are pretty much the same. Don't let things get you down give thanks you have you baby back and count your blessings every day (sometimes difficult i know) Accept what is not changable and be thankful for all our lovely friends on this site. Take care
you guys are not alone. I feel much the same. I have very little quality of life and it's exhausting to just do the basic daily things to keep going. I can't get any of my docs to listen and at times i am ready to just give up. i do understand how you feel and sympathize.
Hi Delle i too have SSS and only today chatted with my doc about it and as long as I'm not dizzy ect its no problem but if it becomes troublesome a pacemaker will be the way....not as scary as it sounds. I too feel like you in fact in bed now but I'm on max beta blockers to for AF/flutter...surrounded by my 3 babies. .cats!! X x x
Thank you, I take beta blockers too, but GP has been slowly reducing my dose since I have absolutely no energy and have been all but housebound since mid September...I have dizziness and vertigo when I lie down, and am plagued with dizziness all the time...my pulse drops into the 40's but can go up to 80...I also have frequent drenching sweats...awful!! I'm all over the place...but I suspect you are pretty much the same...down to the three cats...only I have four...my three "white brothers" and a little mackerel tabby.
Cats are so special, they are all I have and the reason I live ...lovely to meet you, I appreciate you sharing with me x
I haven't ever been diagnosed with SSS, Sick Sinus Syndrome if that's what you are referring to, but have had arrhythmias month after month that have flawed me and sent me to my wits end. I was under a GP but to be honest getting nowhere. Eventually I asked for a private referral to an EP who sorted my problem out in a few weeks simply because he tested me, diagnosed the problem and knew exactly what to do about it and it worked. My GP's were, according to him, prescribing completely the wrong drugs.
If you feel that bad you surely just have to see a specialist; No if's or but's about it if you ask me.I had to travel about 60 miles to see mine. Nothing local.
Where are you located? Maybe someone can suggest a specialist or whatever.
Hope you get to feel better soon, know how low you feel.
Thank you Koll, yes I agree, I have no real life and truly feel as though I'm slipping away..the LAST thing I want...but I'm also too sick to be demanding since doing anything is so difficult feeling this way...you'd never believe I've been fully independent and done everything for myself all of my life...until June !
I think Koll, nailed it about you need to see a specialist. In my goggle search I came up with this. Sick sinus syndrome (SSS), also called sinus dysfunction, or sinoatrial node disease ("SND"), is a group of abnormal heart rhythms (arrhythmias) presumably caused by a malfunction of the sinus node, the heart's primary pacemaker. Here is a link to Mayo Clinic on the subject if this is what you have. Maybe it will help you to ask the right questions when you see the GP.
No I didn't..I was fine from June until September, when I thought I'd come down with "REAL" flu, unfortunately I've felt the same ever since then. My GP has been lowing my BB, (Cardiologist unimpressed but not offered me an appointment yet...been waiting months!)
It was that which made me think of Sick sinus....I now take half my original BB dose yet my heart remains slow...I would have hope it would have speeded up a little, as did my GP...at my wits end and terrified this will see me off...wish I'd not thought of this until Monday...at least then I could have spoken with my GP...truly desperate to feel like me again :/ x
Whatever it is, you do need a diagnosis. Although it could be SSS - My suggestion would be to also look at Autonomic Disorders as that would fit the symptoms you describe and can cause Arrythmia. It can often happen after a virus and seems to be often linked with autoimmune responses.
There are a very few- do mean VERY few specialist in this area but this site may help. A list of specialists on the link below - there are a few cardiac/autonomic specialists.
Have you had your thyroid checked? You sound hypothyroid to me. I have had mine out, so I know the symptoms. It is easily sorted after you get a diagnosis but doctors seem unaware of the signs and symptoms.
You can easily check the symptom list with Thyroid UK and they have an HU forum. You will be transformed once you get the right level of hormone but you will need a blood test to confirm it. Good luck.
I used to be Hypothyroid but it got better all on it's own...at one time I was taking 175mcg thyroxine plus T3, but over the years I just needed less and stopped taking it completely four years ago when my AF was starting...didn't realise what that was then, certainly do now!
I wish it was this simple...I've been all but housebound for three months and no improvement in sight...really reel like I'm dying...not begin a drama queen I promise...being alone and sick is dreadful...made even worse byt this time of year xxx
Sorry but I still feel sure your symptoms are thyroid related and it is extremely unusual for a thyroid problem to simply disappear. If you had hashimotos disease, it can get better for a while, when antibodies temporarily stop attacking the thyroid but then it usually starts up again or can swing between over and under active.
I seriously would advise you to ask for a full thyroid test. Ask for TSH, Free T4 and Free T3, plus antibodies to check for Hashimotos.
Your story is so typical of what is happening all over the world to thyroid patients. Their problems are just not being recognised. It took five months of repeatedly going to my GP and being sent away or asked if I was depressed, before one doctor happened to check my heart. It was going crazy because of excess thyroid hormone. It probably did damage to my heart, which is why I am on this site.
For your own sake please read up about it. It was awful to see your first post and feel your misery. It can get better. Please get proper help and I hope you will feel better soon.
So now you need to get the results with reference ranges for each one and post them either here, where I can give an approximate opinion, or on Thyroid UK, where loads of very experienced admins can help you. If they tell you they are "normal" do not believe it, until you see them for yourself and see where you sit in the reference range of each one.
Did they test antibodies?
You are entitled to have your results, although some receptionists can be a bit officious and ask why. You simply "need them for your records".
By the way, I was told I was normal and struggled on for another four months before one doctor saw the light.
You can get straight to HU Thyroid UK using your membership of this AF site.
Sadly yes...40 mg twice a day...GP hates it, I just hate the way my life has disappeared....praying so hard to be me again...feeling lost and alone so popped in here because everyone is so kind and supportive...hoping so much I'm not begin a nuisance.
I'm truly grateful to each and everyone who has taken the time to help..thank you all so very much...really can't wish the seasonal greeting...head space still not there...but I do wish you all Joy and Blessings with HUGE thanks xxx
Naughty suggestion: Go out to the supermarket one day when you are feeling particularly bad (probably you are going to tell me you always feel bad!) Then you will have a 'turn', they will call an ambulance and hopefully Social Services will organise care for the cats 😈
So sorry, it's not acceptable for you to have to continue in this way. If you are in a position to could you select and pay to see anEP privately. There are some excellent EP's surely one of them can diagnose and treat you so you can get your life back.
I would be asking my GP to refer me to one via the NHS choose and book system if money is an issue or the GP can refer you to one privately. One thing is for sure you can't keep this up you deserve first class care as a priority.
Many of us have felt like you and been in despair, it's dreadful, but there is help out there. Best wishes .
Thank you my lovely...I know this however seems no one in the medical profession does...I've just been awarded full AA with back pay so can pay for consultations...but it's Christmas now...fat chance of anything quick! xx
I found this on Healthline which is also a helpful site:-
Autonomic dysfunction can affect a small part of the ANS or the entire ANS. Some symptoms that may indicate the presence of an autonomic nerve disorder include:
dizziness and fainting upon standing up, or orthostatic hypotension
an inability to alter heart rate with exercise, or exercise intolerance
sweating abnormalities, which could alternate between sweating too much and not sweating enough
digestive difficulties, such as a loss of appetite, bloating, diarrhea, constipation, or difficulty swallowing
urinary problems, such as difficulty starting urination, incontinence, and incomplete emptying of the bladder
sexual problems in men, such as difficulty with ejaculation or maintaining an erection
sexual problems in women, such as vaginal dryness or difficulty having an orgasm
vision problems, such as blurry vision or an inability of the pupils to react to light quickly
Hi Delle, it's Pat AF here. I think Pat 'Falling to Pieces' may have hit on at least part of the problem - like you, since I was put on beta blockers I've felt low and lethargic, and also had balance problems. My wonderful GP has organised an MRI scan for the balance problems, but I really think it's the Atenolol. I did find the lethargy, etc., improved when I started taking Magnesium (250mg daily). I'd try anything from all the above suggestions which you've not tried before, but you certainly seem to feel as I did when at my lowest - you just don't have the energy or willpower to try anything! I really know how you feel.
Another thing I found helpful was to do some very limited 'movements' whilst still lying in bed. Sounds as if you are getting very little exercise being in bed so much, which can make a difference to your physical and mental wellbeing. Here are a few suggestions - but make up your own, as you know what suits you:
1. Remove all cats from bed;
2. Lie flat and clench and unclench any part of the body that's clenchable; (Aerobics teachers do this to relax people after exercise. I do it to wake my body bits up before 'movement').
3. With arms out sideways to stabilise you, gently raise one leg, with knee bent, as near to your chest as possible, then stretch it out as flat as poss. Repeat with second leg, (or as many as you have). Finally both/all legs together.
4. If you can lie on your side, do so; stabilise yourself with arms and hands, raise one leg (knee bent) towards chest again; keeping knee bent, move leg backwards as far as poss, bring it back to centre and stretch it out. Repeat as above in 1). Try turning onto the other side and attempt the same.
If you can try any part of these, HOORAY! I am aware lots of people can't lie on one side or another, and, of course, many cannot raise a knee anywhere near the chest, but the descriptions I've given are simply for guidance. What I found is that I gradually got better and better over time. Nobody 'fails' at this - we are just helping ourselves. I now do 20 mins, starting in bed, then sitting up and finally standing. (I can easily describe the other movements, if you are interested).
I've suddenly remembered doing movements as a schoolchild to a lovely radio programme called 'Music and Movement' - maybe we should find some music to soothe us through it.
I only wish I was of a similar age to you - I'm 75!
I, too, loved those BBC booklets we got to accompany programmes. I remember learning all kinds of English folk songs, (was the booklet 'Singing Together?), and they often pop into my mind even now. I pass a place called Ash Road and immediately start warbling "The ash grove, the ash grove .....". Good job I'm alone in my car.
And if it is something to do with your thyroid, I do know that thyroid levels considered to be normal vary from one health authority to another. Also, I'm sure I've read that some people need to be treated despite being within those normal levels.
There is a thyroid community on this HealthUnlocked website. Once you know your actual results you could run them past the people on there.
In my continual questioning of the "why" Afib happens, I have come across an interesting theory. It said it originates in the liver as the liver is the filter for the heart. That is interesting to me because I have had type 2 diabetes for about a year and a half and the stress of irregular glucose taxes the liver. If this theory is correct, strengthening the liver could help Afib. This includes eating an extremely low fat diet (I had been eating a lot of meats, cheeses, and other dairy products when my Afib hit.). Smaller meals with light snacks helps the liver. Water with lemon each morning. Tons of fruits and vegetables with a little meat and a little grain. Keep dairy products to a minimum. And also wheat. Finally, a milk thistle supplement can help a sluggish liver.
These are some things you might try while waiting to see a specialist. It may help your symptoms, but if not is an extremely healthy diet that will benefit your whole body. I have been a sugar, fried food, dairy, bread junky my whole life but am trying to make these changes to help my body stay out of Afib after my ablation in November.
Delle, really sorry you are feeling like that, hope you find a solution about a consultant soon. My father had similar symptoms and in between sweats, he started having syncops- episodes of no heart beats at all for up to 5seconds and he would realise it actually. So he was immediately put in for a pacemaker with the pulse rate being set at min 60 bpm. He has never felt like that again since and he has more energy to get about his daily life, 180 degrees change. Get well soon and be strong xx
Thank you for sharing that di-London....it's the route I feel I should be taking...but I need to see my cardiologist first...I just have to wait..pretty much three months now...no fun at all x
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