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Hello

Hi everyone,

I have posted on this forum a couple of times and spent many hours reading through the posts.

I’m struggling at the moment with my heart and find myself taking great comfort from the information and advice given here and would like to be more involved than just lurking in the shadows 😊

I have had PSVT typical rates of 240bpm lasting from 2 to 28 hours from the age of 17, with maybe 2 to 6 episodes a year,misdiagnosed as chronic anxiety for 15 years even though it was captured a few times on an ecg reading?!?! I refused anxiety meds so was labelled as a resistant patient.

At the age of 32 I had my first episode of atrial fibrillation, called an ambulance immediately as it felt so different to anything I had experienced before. Converted with IV Flecainide after 19 hours and sent home with a diagnosis and prescription. Had an annual appointment to see a cardiologist who repeatedly said your heart is fine, you don’t have atrial fibrillation the ecg is clear. Eventually he signed me off saying that after lots of investigation( a holter monitor and echo) I didn’t need to be seen again.

I have managed, sometimes quite badly, to cope with the random bouts of PAF and SVT I now get them more frequently and they are influenced by my menstruated cycle and eating.

In December 2018 I had a very bad episode that led to me collapsing at work and an ambulance being called. My rate was 130 and seemed regular but I have never felt so unwell. The paramedic told me to calm down because I was having a panic attack. 6 hours later in resus after a rate of 250 when moving any part of my body the doctor finally told me I was in atrial flutter. This arrhythmia was the worst thing I’ve ever felt, even talking would make my heart rate soar. Eventually I converted after 8 hours and another flecainide. I spent 5 days in CCU in NSR but with episodes of tachycardia especially in the morning and after eating.

I haven’t felt well since December and my heart just hasn’t settled. The rate goes up and down for no reason and eating has become a real challenge because it makes my heart race so much and I burp and have a feeling of faint after every meal. I have been unable to work and just feel like my life has ground to a halt.

I am seeing an EP in Sheffield for the first time on 1st March and I’m trying to get my doctor to investigate my tummy problems that have become so difficult to live with. He has given me omeprazole and told me that he thinks my tummy problems are anxiety?!?!?!

I’m sorry this is so long, i hope someone manages to wade through it all!

I hope you are having a nice Saturday morning despite storm Erik!

Kelly

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And hello back! Need to be brief because I’m under instructions to go shopping!! Many people experiencing anxiety find that it effects their stomach and bowels so try not to worry about that, the important thing is to try and alleviate the anxiety which of course, is not easy. I think you are doing the most sensible thing by seeing an EP so I expect not much will happen until you have had that discussion. However, use the time wisely by making sure you have a list of all the issues you wish to cover and if possible, take someone with you because it’s not always easy to remember the answers.....that said, you are much younger...😉

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Thank you so much for the tips! I will be taking my husband and my list with me. I’m not that young anymore, 46 at last count! This has been going in for some time 🥴

Enjoy your shopping and watch out for that wind!

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Hi Kellyjelly,

First of all I am so sorry you are gong through this. You sound like a mirror image of my symptoms and journey. I find the psvt horrendous and find myself in a and e and then coronary care with intravenous flecainide and Iv morphine for excruciating chest pain. I find it worse than my af episodes, I think it's the mad rate of 250 plus which causes such extreme symptoms. I feel totally taken over by it and there is nothing to do other than go with the flow of it when it happens as it is so overwhelming we don't have a choice.

The good news is you are now going to see a specialist and you will get all the tests you need and a treatment plan so your journey to controlling this condition is underway. Remember a little progress is still progress so hold on to that in the interim, you are no longer alone with this. Ask as many questions here as you want, read all you can on the afa website and arm yourself with questions for your hospital specialist. Mention the food issue, I have gastric problems too and medics now recognise the connection between gut and heart as they didn't in days gone by.

Lastly, if you feel up to it, there is a patient support group at northern general hospital in Sheffield, it's a great group lead by an arrhythmia nurse, it's held in the education department opposite chesterman block. There is a meeting next week from memory. Have a look on af association website it's advertised there, they meet ten am to 12 Noon usually. You can listen, ask questions, meet people coping with the same thing and then chat to the specialist nurse afterwards. I can't recommend it highly enough. You don't have to book and can just turn up you will be made very welcome. They meet every two months or so. Hope this helps, send me a private message if you want to chat.

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Thank you so much for your kind reply. I have to say that reading your reply made me feel really emotional, I have been feeling so overwhelmed since December. I have gone from coping for years with the afib and svt to now having a really unpredictable heart rate and feeling so poorly most of the time. I’ve been reading this forum for hours every day searching for answers and didn’t post because I didn’t know where to even begin with my story.

The stomach problems have been lingering around for years but now are constant and really debilitating, I will definitely mention this when I see the EP.

The support group sounds great! I don’t feel like I could go this time but I will definitely be attending when I feel a little better.

Thanks again for all your help. 😊

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Kelly, your list of experiences with the medical profession had me open-mouthed, you must feel really let down every which way by all the 'professionals' you've come into contact with. I'm not in any way medically trained, same as most everyone else on the forum, but to hear how you've been possibly misdiagnosed since you were 17 beggars belief.

I know atrial flutter, on the occasions I've had it, felt as bad if not worse than the AF, and tachycardia doesn't feel great either, as others on the forum will testify, so I can sympathise with you feeling anxious, especially when you're not taken seriously, and if eating is making things worse it must be really hard to cope with everything.

I'm so glad to hear that you have an appointment with an EP soon, and hope that your symptoms finally get taken seriously and you get a proper diagnosis and treatment. Please come back and let us know how you get on.

All the very best, Kate

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Hello Kellyjelly and welcome! As I read through your post I wondered why on earth you had not been referred to a heart rhythm specialist, but see now that you have.

It’s awful that you have put up with so much over the years. Of course you were anxious, who wouldn’t be? Also AF is very good at hiding from monitors and in my case went away completely for a couple of years. It makes diagnosis difficult and stressful for the sufferer.

Very best wishes with your EP appointment and I echo the good advice of other posters.

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Thank you so much Finvola!

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Aw Kate thank you so much 😊

When I ended up in CCU in December the cardiologist did his rounds and asked for my story, I told him and he took my hand and said that I have been really let down by the system and it’s time to get to the bottom of it all. I can’t tell you the impact it’s had on me not being listened to over the years. It’s one of the reasons why I just buried my head in the sand and hoped It would just go away.

Even now I know that my stomach is creating problems with my heart and the doctor just doesn’t seem to be able to get past the anxiety diagnosis( that I really don’t feel is correct)so I feel like yet again I have to really fight to even get them to accept what I’m saying. I’m hoping so much when I see Dr Kelland in March I will finally be able to just talk about the actual condition that I gave rather than be questioned on wether I feel anxious or not?!?!

I’m so glad I posted here today, it’s helping me so much already!

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There is a definite link between AF and gut trouble - via the vagus nerve. There have been posts about AF triggered by eating and AF causing bloating, burping and other anti-social gut activities. The search box at the top right of the page may help you find them.

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Thank you 😊

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I was going to say exactly what Finvola has said above. It’s all connected! Good luck when you see your EP, who will take you seriously.

Ally

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I really really hope so. 🙏

Thank you

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Hello Kelly, welcome to the group. Thanks for sharing your story. I've often found flutter to be more symptomatic than fast AF (I've had both) so I can totally relate. And I'm pleased you got an answer as to what it was.

I hope the EP can give you options and a plan.

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Thank you, I really really hated atrial flutter. I thought I was dying 😳

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Yep, I thought I was having a heart attack despite having had fast AF for years prior..... crushing chest dizzy and HR 200+ when they could capture it.

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My heart rate would settle at 130 lying down but if I moved a muscle it would shoot up to 230-250. I had pain in my heart and struggled to talk with the pressure in my chest and feelings of faint and impending doom. It felt like my heart was stuck in a bad place!

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I’ve only had it once but feel like my heart hasn’t gone back to normal since. I’m in NSR but heart keeps speeding up for no reason. Do you know if flutter can damage your heart?

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I can still remember the day when my GP asked me solicitously if I was suffering any stress to which the answer was ' Only about my weird symptoms'. That was the day I gave up complaining to wait for the day I was able to prove what the cause was which thankfully arrived with a long episode of AF which no one could miss! My digestive system is definitely affected by my AF, (also had flutter), when my heart is irritated it races whenever I eat and I also get diarrhoea, definitely caused by the AF. It works in reverse as well, a bad bowel upset can result in AF. I was in A&E for fast AF on Monday and we had an amusing moment when the nurse bending over me suddenly asked 'Is that your stomach?' I had got used to the gurgling drain noises...... If you look up 'dumping syndrome' you'll probably recognise some symptoms. As I told the nurse my body can't cope with digestion when my heart is racing.

I sincerely hope you get good treatment from now on. I would love to say to your GP that anyone who has managed to cope all these years with your symptoms and medical neglect is not suddenly going to get stomach problems from anxiety when she finally gets a diagnosis and a suitable referral 😠 You can quote me.

Best wishes X

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Thank you so much buffafly. What a lovely kind reply. I have lost count of the amount of times I have been asked about anxiety and stress. Two weeks ago I fainted in the doctors with racing heart and the belching, they called an ambulance the paramedic asked me enough route to a&e if I suffer from anxiety, I said when my heart goes over 100bpm I tend to feel a little anxious but in normal day to day life no I don’t suffer with anxiety. A very clear answer given in a very calm way. I read the report he wrote in my notes that I seemed very agitated and anxious and possibly suffer from anxiety?!?!?! I wonder why they ask the question if they don’t really listen to the answer.

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By the way I will definitely quote you when I see him on Monday, I have a feeling he is going to come on strong about the anxiety 🙄

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I also have trouble with irregular/missed/fast heartbeat after eating, it was put down to irritation of the vagus nerve. I’ve now had it for 7 years, not every time I eat now, but often enough, just know that it won’t kill you, it’s horrid, but settles. I’m on omeprozole too, only for the heartburn that happens because of the warfarin. Life goes on, albeit different from before the AF and LBBB.

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Thank you for your reply, it’s so reassuring to know it’s not all in my mind! Do you have other symptoms after eating like chronic belching and a feeling pressure in your chest? I don’t have any heartburn or anything but was put in omeprazole in a&e when the doctor suggested that the fast heart and belching were not cardiac in origin but gastric. She seemed to think that they may not be connected to my afib/ svt. My gp is continuing the prescription however he thinks it’s anxiety causing the stomach issues. It’s so confusing!

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It is quite possible you have a hiatus hernia or some other gastric problem. Like IBS, anxiety should be final diagnosis, not first.

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Hello Kellyjelly. You have been through the mill. You have some great advice and information from the other members. I want to add a couple of things.

1) GPs are not clued up on cardio matters, Atrial Fibrulation, Atrial Flutter etc. etc and often miss the problem so do not be put off. They are General Practicioners who have a knowledge of general ailments but have not specialised or honed in to any particular part of the body so do not have the answers. At last you are being referred to the heart specialist.

2) I was told by a paramedic to always call the ambulance when in AF because they can usually catch the arrythmia on the ECG when they arrive and this is the proof you need.

3) Ask about anticoagulation. Really important to reduce stroke risk.

4) If you are not happy with ANYTHING at your EP appointment, ask for another opinion. Do not be put off, these are people like you and me and they do not know everything, they only know what they have seen and have experienced. You are in charge of your journey so don't get down hearted and keep pushing.

Keep coming on this forum as there are a lot of very lovely, caring people on here who do know their own hearts and bodies and can give you some comfort. Ask questions then ask more. Good luck with your EP, let us know how it goes and write everything down you need to ask. Remember anticoagulation.

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Thank you so much for all the advice and really useful tips. It’s all helping so much and thank you for being so kind 😊

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Hi, forgot to add this. Take a look at Dr Sanjay Gupta’s videos on YouTube and his Facebook

Page York Cardiology,’. Great info there, well explained . He mentions the connection between the Vagal Nerve and A Fib.... which may be interesting as you are having stomach problems.

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Had stomach problems most of my life and been on lanzoprozole for years, and had the "your just anxious" line when in fast AF in the past going undiagnosed. After a bad bout of sickness and diohrea last April, followed by worst AF ever which hasn't totally subsided and can be made worse depending on what I eat etc I totally understand how you feel. Good that your being listened to and on the right track now. I'm in for abaltaion Tuesday after an EP did a halter monitor last year and found SVT and Afib was the cause of me feeling unwell. Hope you get treatment soon, shocking how it's been missed for years but I think the "your anxious" attitude is typical of A and E doctors I've seen over the years, good luck now your being taken serious now itl get sorted for you

Ian.

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Thank you Ian, I’m sorry you have had such a rough time and I hope the ablation takes care of everything for you and you start to feel better.

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There are so many different types of arithmyas that only the EP will have the best assessment for your particular condition and will recommend the best treatment for you. I also had a bad time with flutter in December (apparently it was made worst with Flecainide that I had been taking for 4 months, so don't be disappointed if they do not get it right first time). I am now on bisaproplol, digoxin, Riveroxiban and omeprizole and due for an ablation on 5 March (never dreaded something I really wanted before). To get me out of 4 days in Afib I had a cardioversion in December (nowhere near as bad as it sounds) and whilst I did feel better after, it took weeks of feeling bad with short runs of tachycardia and ectopics, now I feel fine with very occasional milder ectopics. I am still on a big learning curve but I can suggest that you try a magnesium supplement (not magnesium oxide), I take magnesium taurate and have read good reports on Heart Calm which I will try next, you will likely have to take it for weeks/months to feel the difference. Magnesium balances the minerals, vitamins, electrolytes used to produce the electrical energy needed for your heart to work and the levels in you blood (identified in blood tests) do not necessary reflect the levels needed at cellular level. Also if you do not have enough potassium, calcium, sodium, iron, vitamin D etc it makes it impossible for magnesium to do this balancing act. In the mean time, I can say from personal experiance, that you must take it easy to prevent irritating your heart and I mean really take it easy until you see your EP.

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Thank you so much for taking the time to reply and all the good advice. I hope that you gave great success with your ablation and completely understand your feelings of dread even though you really want to go through the procedure.

I have been taking magnesium glycinate for 2 weeks but I have to stop because it has given me really bad sweats especially at night. I tried it about 10 years ago and had exactly the same reaction so I don’t think I can tolerate it which is a shame.

I am trying to take it easy until I see the EP in March, it’s such a shame this didn’t all kick off in the summer I could have been spending days lying in the sun rather than huddled up trying to keep warm 🙄

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Yes just like you I thought it would be better feeling like this in the summer but I have changed my mind, thinking positively I have decided that best go through all this grief now and hopefully we will be a lot better to enjoy the summer.

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That’s the spirit, I’m going to adopt your thinking! Thank god I’m stuck inside in this awful weather nice and cosy in front of the fire 😊

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Hi Kelly

As so many others have said, sorry it’s been such a rough ride and I’m glad you’re finally being listened to. I’ve had similar experiences to you so want to suggest other things to consider ... 1) as we age our digestion becomes less efficient and reflux etc become common complaints dealt with by omeprazole and lifestyle changes. It may be that you have just hit the stage of life where you need to revise when/what you eat. Do you suffer biliary collic? Could be your gall bladder is acting up. Mine did - things settled once I had it removed. 2) research disordered breathing. I would stop belly breathing when in AF and start to hyperventilate leading to anxiety/panic. After so much AF I kind of forgot proper breathing so had to go to a physio to learn how to slow my breathing and reactivate my diaphragm. My anxiety wasn’t driven by my head/thinking but by the way I was breathing 3) at your age you are heading towards the menopause and those hormone shifts can precipitate cardiac effects. It would be nice if your cardio understood gynaecology and vice versa but mostly they don’t. I would feel my body building towards AF as I neared the end of a cycle (increased chest pressure, ectopics, brief SVT). Once I finally started a period the relief would be almost instant (no chest pressure, mostly NSR). My cardio and Gynae both said there was no evidence of a connection - but that didn’t stop it happening. Now I am in menopause I have started HRT to deal with insomnia, sweats and low mood. It has helped enormously. I don’t get those surges of cardio symptoms since I no longer have cycles but the PAF still happens every couple of months. I’m amazed at how little attention is paid to AF and gynae.

I wish you all the best as you figure things out. It can be very dispiriting when you feel like no one’s taking you seriously but don’t give up. Be your own best advocate :) Lani

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Thank you so much Lani, what a really insightful and thoughtful reply.

I really take on board what you are saying, it makes a lot of sense.

The way you describe your heart and the lead up to your period is very familiar to me, it all gets much worse when I’m due on and again when I’m ovulating. I have told the doctors for years that my afib was connected to my cycle but they said it wasn’t. However years ago I was on a CCU ward after a bad afib and I mentioned the connection to the ward sister and she said that she hears it all the time from ladies and she can’t believe that the cardiologists and gynaecologist still don’t accept the connection. I think that it is a little more accepted as we get older but no one would hear of it when I was a young woman.

I want to thank you again for all the tips and info in your reply it has certainly given me things to consider.

😊

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Hello Kelly. I really felt for you and the bad experiences you've had to go through. I've had heart issues since my teens, I'm now 60 just recently after having digestive issues since 7yrs old along with all too frequent "faintings" I've discovered I'm suffering from multiple food sensitivities. Eliminating them all has turned me roung and though I still get occasional flutters and ectopics I actually feel much better but I know when I've eaten wrong as symptoms start up. My particular issue is with wheat and gluten.

Just a suggestion as it might help. I wish you well. Everyone on here are lovely and very supportive. BTW I have had anxiety since childhood. I think of mine as a symptom not a cause. Unless you have af people don't get it nor professionals in my experience x

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Thank you for your lovely reply. I’m sorry you have had to deal with all that. Can I ask how did you realise that certain foods were making you feel so poorly? I’m so pleased that it has made you feel so much better and I have wondered if food is creating some of these symptoms but so far have tried various things like eating less carbs and no bread etc but can’t say it has really helped although I have noticed that a meal heavy in carbs can really bring on the racing heart especially in the daytime.

I like your idea that your anxiety is a symptom not a cause, I feel exactly the same. Thank you again

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Hi kelly. I've had digestive issues as far back as childhood. Ectopic beats started to be noticeable in my teens. I was also a fainty kid and so I started looking into this with food but just didn't get it and was dx with ibs, anxiety etc but not really connecting foods. By my 30's life became miserable and started carting anti diarrhea tablets with me everywhere. I had other health issues and basically felt that this was just me. I'm now 60 at 55 my life was turned upside down with a run of horrible personal and family traumas and my ectopics became severe and was put on antidepressants gradually over that period I was toilet obsessed as always needed to be near one, if you get my drift.

I had endoscopy's which came back with inflammation but nothing else. I'd also started having trouble swallowing, again all put down to anxiety I'd been on and off propranolol since my 30yr old this last few years I found I was struggling to swallow, again I put it down to stress and anxiety and going through more family issues and a divorce. Was getting nowhere with doctors but had seen a herbal shop advertise sensitivity tests so got and appt. The list of food allergies was extensive but wheat and gluten were there and he highlighted the ones I was very reactive to and they were highlighted along with a few others (chocolate and dairy) so eliminated everything. My symptoms went away. In the mean time I'd been dx with afib.

Now I only get the odd flutter and ectopic.

I've tested this by eating wheat products and all the symptoms come back with pain on swallowing, now even without swallowing food it hurts to swallow and my ectopics are awful.

I've accidently eaten food that I thought was safe without reading ingredient list and know that these things trigger everything. I'm now off bisoprolol and just carry as pill in pocket and only take apixaban and pain relief for my arthritis, which isn't as severe any more too.

Now whether that's just me or not I can't say. But this is my experience, the list of allergies is a long one, so far by mistake I had figitten orange was one and drank orange juice, boy was I ill.!!!!!! So though initially I was doubtful its true that foods affect me both digestive and heart .

Sorry this is long. Lol x

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Thank you so much for taking the time to reply with so much detail. It’s really helpful and has given me a lot to think about. I feel like I have been living with the digestive symptoms for years but now they have become so frequent and intense that whatever is causing it has finally reached a tipping point in my body. I think that food intolerance testing might be really helpful and will look into it. It’s so good that you have felt so much better with a radical change in diet and makes me think about how much better your health would have been if our approach to health was more inclusive of diet. It is a really overlooked area in my opinion.

Thanks again 😊

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I am yet to tackle my gp on my findings. I feel if I'm tested for celiac, which is the wheat issue side then at least it will be on my medical records. In a separate note, my pain levels have also reduced so my meds are also reducing. I'm still anxious, but home pressure of two teens, both with health issues and caring for mum who is approaching her 88th birthday soon and doing it all on my own is a factor that isn't going to resolve. Look out for health shops and ask about sensitivity testing. It cost me £50 for a full test which was extensive there was a basic for £35 and obviously I had an element of doubt as to how some tiny bottles, 2 wires and a tiny probe that was just on my thumb would work . I now don't miss most of the things and I have tested out one or two I miss with very notable reactions. It's tough sometimes, I read food labels avidly. If it was a simple wheat, gluten, dairy allergy (quite common) then there is the free from products. Some I actually can't use as a substitute in them is potato starch and potatoes are on my list, as is chocolate, black tea, coffee, white sugar, orange, pineapple grapefruit, prawns, lobster. All the nice stuff. Lol plus no alcohol. Initially I was devastated. The gluten free products use potato starch and chocolate to compensate for taste, which is bland but obviously I can't use, I make and bake/cook from scratch now to be sure.

A big plus is weight loss as I've lost nearly 2st and the bloating I had is gone and almost 2 sizes down in clothes 😁

Do keep me updated on how you get along. Xxx

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Like the others who have answered, I am outraged on your behalf that you have been let down for so long in getting a definitive diagnosis. And the problem is that once 'anxious' is on your record that tends to be the first question you will be asked, no matter what is going on with you physically. So keeping everything crossed for you in that you will get the treatment you need.

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Thanks for replying 😊

That has certainly been my experience. I feel like it really gets in the way and although I know that I do get very anxious especially in the throes of a heart rate breaching 200bmp I know that if the episode stopped I would no longer feel the anxiety. Someone said to me yesterday on here that they see the anxiety as a symptom rather than a cause and that is exactly how I feel. I’m hoping so much that t is going to get easier from here on in 🙏🙏🙏

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Hi, I’m on Omerapazole too and think they are brilliant, by the way your lots younger than me!! Hope all goes well.

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I suffered svt for years and was prescribed Verapamil which helped for over 10 years but it gradually got worse and I ended up on the highest dose available. I then suffered Af - waking up with it one morning out of the blue and like you and others have said it is very very frightening and you can't help but feel anxious.

My cardiologist arranged last year for me to be fitted with a heart reveal device (you can google it) this captures what the heart is doing 24x7.

I have a little device to press against the device inserted in my chest which marks the time i have symptoms/start of af.

As a result af has been confirmed after capturing several bouts of af last ing 6 hours + before, it was not captured on ecg or even after 7days on a holter as I was ok at the time.

May be you could ask your EP about having one fitted?

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Thank you for your really helpful reply. I’m having a 7 day monitor fitted on Tuesday, I begged Dr Kelland secretary if she could arrange for me to have one fitted locally before my appointment in March so that I will hopefully have as much evidence of what’s going on as possible. I really can’t wait to have it on but I know from past experience that my heart could just behave as if it’s never even heard of afib!!!! If that happens I will ask the doctor if I can have a reveal device as you suggested. How long did it take before you caught anything on it? Did you have it for a long time?

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please research magnesium deficiency and symptoms of magnesium deficiency benefits of vitamin d3 and k2 Mk 7 look at strep virus and relationship to this virus gaining strength durning monthly cycle goodluck

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Thanks for your reply. I have tried taking magnesium twice over the years and it gives me really bad night sweats. I’ve tried glycinate and citrate but both seem to do it, even an Epsom salts bath will have me awake with night sweats. I’ve used magnesium oil and that didn’t do it but also didn’t seem to do anything to help.

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