totally fed up and confused :(

Hello to all....i was first diagnosed with AF December 2013 it was a very scary time ...i had a cardioversion which got my heart back to normal rate ......I also have high blood pressure and a LVH... Then on September 7th 2014 i went into fast AF again and was given another Cardioversion which seemed ok and was prescribed warfarin ...since sept i have been in hospital every month since . i get shortness of breath and legs feel like jelly if i have to walk any where even at first ,from room to room ,now i can cope around the house ....but if have to go out to drs or shopping i have so much trouble getting my breath ive been off work for 3 months ..also in october i had a TIA mini stroke ...november it was Fast af and possible ear infection ...and just before christmas was back in hospital with a upper respitory tract infection, I was also told i will be in continual AF....just wondering what january will bring ....my medication is warfarin 3mg, atorvastatin 20g,Bisoprolol 10mg,Digoxin 180g and Ramipril i.25 mg ....but still and worst is my breathing on doing anything physical as cannot seemyself back in work anytime soon ....im so confused and fed up im constantly tired ....sorry folks think i just needed to have a rant ...im seeing my cardiologist next monday and i want some answer ..i just feel im being fobbed of ...but not going to be this time...thankyou anyone for taking the time to read my moan and hope you are all well xx

22 Replies

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  • Hi sheila,

    I was terrified when I had AF. 220 irregular. multiple hospital visits. off work for 6 months it was debilitating and no one understood what was causing it. Cardioversions. tablets. 6 doctors. Cardiologists. surgeons. all insisting on meds or surgury. One of them didnt even know what taurine was even though it plays a major role in our hearts. They wanted to do the surgery after 2 years and kept pushing for it. I tried everything and I mean everything. drinking boiling water. doing butt squeezes. all kinds of supplements.

    In the end, after self testing for 6 months because I hate the thought of surgery to temporarily relieve symptoms. I adopted a paleo style diet. I just buy things from the fruit and veg section and fresh meat. 60% of my diet is veg. 20% fruit. 20% meat.

    No processed anything. Plus I take 1 TABLE SPOON when I used to get afib of bioceuticals.com.au/product... plus a little CoQ10

    Anyhow 3 years on and I've never had it again.

    Plus, about 2 hours ago I went to the Optometrists and my vision just went from 4.75 to 3.5... he was a little shocked and didn't know why its getting better lol.

    So yep. All in the diet. Quite a massive change but well worth it I think.

    That doom feeling getting you down. The utter hopelessness. The shakes. Sweats. Terror. I've been there. Now its all stopped. Maybe I'm a lucky one but the doctor called me up a few months ago telling me I need to get the surgery. When I told him I don't get afib any more he still insisted even though the ECG is clear. Just kept saying to me dont you want to get it done so it can never come back just in case. Made me so angry as they tried me on 3 beta blockers but they all made me drowsy and forgetful and gave me headaches and chest pains. Then wouldn't stop hounding me to get surgery. Sure it might work. 70-80% but then it will also come back. So its not a cure, just a stop gap measure for them.

    anyhow I've been there. Hang on. It can get better :-)

    I tried diet meals etc but they are full of MSG, preservatives, natural and unnatural flavour enhancers and colours. Just try a paleo diet for 2-3 months see what happens. Whats the worst that could happen? you get a little bit healthier and lose weight. Whats the best that could happen? You never get afib again...

    Good luck!

    I really hope you get better. once a week I still go out get pizza or to a pub and I'm fine now so its not like you lose out having fun. I just exercise more self control.

    I'm rooting for you!

  • I was fascinated by your experience. I thought I was the only one going down the nutrition route. When my husband was in fast AF he took Ribose and it really helped, so then we tried probiotics. Again, a big difference, and although he's also on Amiodorone we're still researching the part diet can help this horrible condition.

  • There is defiantly a link between nutrition and af for a lot of cases. I have talked to one GP about nutrition and he told me what I was doing was right and he was sick of surgeons and cardiologists just going straight to meds and surgery instead of nutrition first. Imagine if it's nutrition for even 50% of their cases. Suddenly they lose half their money. He was really passionate about it and surprise nutrition helped.

    I did try probiotics and they did help. The dead stop was the nutrient powder and then healthy eating. No coffee no processed any thing. It actually took a out 2-4 weeks and it settled then as time went on it stopped completely. So it was pretty quick. That was after year's of afib getting worse and worse and worse until I said enough was enough. Let's try nutrition and researching it myself. Anyhow I'm sure you don't want to hear my ramblings lol. I still drink every couple of weeks and go out for a dinner with friends. So it hasn't really effected quality of life.

    There's lots of paleo books out there I have 6 or 7 haha. They are all basically the same. They all say just don't eat anything processed. Nothing with flavors, enhances or colours. Even ones that say 'natural' sure orange colour in oranges is 'natural' but refining the colour from 10000 orange skins and using it to colour chips isnt.

    Anyhow good luck I hope you find some answers! My thoughts are with you too. It's a nightmare of a condition.

  • Can I ask what nutrient powder you were taken and how much.

  • s12.postimg.org/mng1yk6dp/2...

    I'm in Australia but that photo is what's in it.

    It's called bioceuticals ultra muscleze.

    I'd take a tablespoon when sick.

    Usually I eat 2 cups of salad leaves and a piece of fruit before drinking it because it upsets your stomach. It will give you the runs if you drink too much. A table spoon seems like a lot but it works for me. When I'm not sick every second day I have a teaspoon after dinner.

    Also 1 teaspoon of taurine on top of the taurine that's already in it.

    And sometimes the CoQ10 those last two are available by themselves in help food stores

    I think the diet change helped 80% of the way. The supplies rounded it off 100%

    I haven't had any problems in a while now and feel great.

  • Thanks for info

  • This is really interesting to me, I am anxious a lot of the time as if Im waiting for AF and headaches to start again ... can you recommend any book titles please.

  • hi Shorian...thankyou so much for taking the time to read my post ....im so pleased you have come out the other side of this ,gives me hope ...your post certainly made me feel better thankyou and I will look into the eating plan, as you say cant do any harm thanx again and take care xx

  • very sorry to hear how it's been for you.

    I would press the Cardiologist about your high BP= ask if the meds are working for this.

    Did you have the TIA while on Warfarin- if so, make sure you have frequent tests of INR to keep in range as much as possible.

    Is LVH left ventricular heart?? wondered what you meant here- obviously cardiologist will make sure any problems with left ventricle are attended to- possibly that's why you have digoxin??

    Lots of people on here can give advice about how Bisoprolol has affected them

    One other small point- do you know if your AF is the vagal type ( mostly at night- waking up etc , on change of position, after heavy meals) if it is , it's worth you looking up online re medication for vagal af and taking in for your cardiologist to see.

  • hello RosyG....thanx for reading my post ..will speak to cardiologist .i had been on warfarin about 3 weeks and my inr was 2.0 my range should of been 2.5-3.0 the stroke consultant did mention that i have to make sure if they want to do cardioversion again ,i need to tell them to do an echocardiograph to make sure theres no blood pooling in my heart ...now im thinking maybe thats whats happened as had the TIA after cardioversion ,makes you wonder really ...

    LVH is left ventrical hypertrophy ..its a thickening of the muscle of left ventrical... i had a scan on my heart 2012 but nothing i thought came of it ...even my doctor hadnt got it on my records only found out about it sept 14 ...

    i had my bisoprolol increased by 5 mg and was doing ok felt better but then the breathlessness came back again ...Rosy dont know if its vagel af i know i feel more uncomfortable at night will read up and ask consultant on monday....one thing i have realised in all this is you cant leave it to docs thinking they now more than me but I check everything now thankyou so much for your advice Rosy take care xx

  • Hi Sheila

    I am exactly the same as you...the breathing and not being able to walk very far expecially if there s an incline and stairs are a no no! I too am beginning to wonder if I will ever get better. I am 52 and am like an old lady I've put weight on due to lack of mobility. I have had 2 cardioversion the first lasted 6 months the second only 2 it's driving me mad I take Warfarin,and Bisoprolol. Like you I'm okay pottering around the house but when I first get up my legs also go to jelly. I'm going to see an EP on Friday so fingers crossed. I hoe you feel better soon...it is nice to know your not on your own and somebody else knows exactly how you feel. xxxxx

  • hello abihel.....feel for you so much ,i wouldnt wish it on anyone ...thanx for taking time to read my moan ha ha , im 59 so couple of years on you ...hope you get some answers of EP friday and your right its nice to to know we are not on our own especially when first diagnosed ...can i ask when you have breathing problem i feel i cant take deep breaths and just under my chest feels so resticted ,just wondered if yours was similar ...well very best of luck friday Abihel take care xx

  • Yes it is Sheila..honestly everything you've wrote is me to a tea....I could have wrote it..it's uncanny we are exactly the same....all I want to do is get back to normal..go to work and be able to walk properly. I am useless at carrying bags I just can't do it are you the same?? xx

  • hello again abihel ...omg was begining to doubt my breathlessness as panic attacks as they are only really bad when i go out and as you say carrying shopping... my local shop is only about 150 yards down the road and i do struggle,

    something i used to walk it in 10 mins takes me over half an hour and have to sit down when i get in to calm down which takes about 15 min ,,,,

    last year i walked a sponsered walk for dementia and sometimes i feel am i never going to do it again ,,,,,,its also the breathlessness thats worrying me about returning to work ,i live on my own and support myself so my job is important to me so i totally understand what you mean ...we can only stay positive and support each other and we will get back to how we was good luck Abihel always here to chat take care and keep going xx

  • I'm going to see EP Consultant tomorrow....I'll keep you informed xxx

  • thanx Abihel hope it goes ok talk soon xx

  • I was like this when first diagnosed and I had an awful two years - actually at the time I didn't realise how awful until I go the proper treatment. You need an EP. I'm not sure what surgery they want to do but ablations do work - not always the magic bullet you would like but they do make it better. But before they can do that they need to stabalise it and you needto manage it. The infections are not good - I have emergency antibiotics to deal with these as they make me so much worse if they progress. I was referred to Papworth after two years of AF (continious) an although it took a while to get it stable, I felt iin really capable, knowlegeable hands. Three ablations later and various changes of medicants and I am quite stable, I hold down a semi physical full time job and have a more or less normal life for a nearly 60 year old. I could not have envisaged this ten years ago. I am not frightened when I get breathless or do go into af as I am well anti coagulated and I do still have not so good days but on the whole I can do as much if not more than people without it. Ask to be referred to an EP.

  • hi Liz ,thanx for taking time to read my post ,my cardiologist doesnt want to operate due to my high blood pressure and history of Pulmanary embolisam and Tia Sso not sure whats next really....so glad your in a lot better place now and definately gives me hope Liz thankyou for your advice and nice to know there is a possible light at the end of this tunnel ..all the best liz and thanx will talk to cardio about EP XX

  • I wish so much that I knew at the start of all this what I know now.

    Stand up for yourself and don't let them fob you off. Good luck.

  • Poor you, what a catalogue of problems. Stay with us and rant as much as you like. It does get better, as you learn to cope with the new and scary symptoms of af. Meds tweaking is an important aspect that you and your gp/cardiologist/electrophysiologist can talk about. I'm sure a lot of your tiredness is due to medications. Good luck and keep in touch. JanR

  • Hi Jan thanx for reading my post (laugh) it was like my life history sorry first time id posted on here ....its so reasuring that others are going through or gone through the same and im not on my own and there is a solution to all this ...

    ive not seen an EP yet but will ask about one ...thanx for your reasurance in it being ok to rant as i think it deffinately helped (laugh) thanx again and will keep in touch take care xx

  • Sorry to hear of your continuing problems with af. I'm also on a good diet....and more meditation/less medication...., for me, that is what works best. for months I couldn't figure out what was happening to me....first on metoprolol at 250 mg per day and then on bisoprolol 10mg per day. I continued to feel terrible and the meds were doing nothing. The more I read on the forums, the more I understood that there may be a relationship between bisop and metop and the inability to walk more than thirty paces at a time...or lift anything more than 10 pounds or so. I cut bisop in half and took both morning and night....still no change...then I cut it in half and just took 5mg at night before bed. I woke up feeling fine all day...walking, lifting, etc...no more breathlessness. And then I went further and cut in half again to 2.25 and then finally to zero....and I'm still feeling fine. At the same time, I am eating more fruit and veggies, less meat, less gluten...no alcohol...nothing with preservatives in it. I'm also chanting, meditating and sending positive vibes to my heart. So far, so good! Maybe take a look at others on the forum who mention symptoms and the "coincidence" of taking bisop. Then again, each individual is different.

    My offering is to be your own best self analyst and researcher and communicate your findings to a knowledgeable and progressive GP and EP....and together work out a long term treatment plan. Wishing you all the best.

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