I don't visit here much now...I've just become TERRIFIED of all things heart related since begin so sick...I'm still unwell and although my drenching sweats and night time (lying in bed) vertigo have stopped since stopping xarelto...my health is still poor, so, although I laid all the blame at Xareltos door, it's probably not entirely to blame.
Saw a Consultant Neurologist for the first time yesterday for my other health issues. He explained that my GP has given my incorrect advice and that I must take some sort of anticoagulant, my GP assured me that I was fine if my heart was irregular but not fast and I believed her...so worried and sick of all this...The reason I popped in was to see if anyone takes aspirin as a blood thinner...really HATE the NAOCs and am so sick of being ill.
I have had too many days now when I wish they'd never saved me after 16 hours in resus last year...although what I REALLY want is to feel human again.... I want is to feel well enough to live my simple life...but it's not happening...it's even difficult to look after my beautiful cats...feeling very sad and sorry for myself...life alone when you're ill is hard.
Apologies for my miseries...hoping everyone is in a much better place than me ♥
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Delle
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I must admit to never having heard of a reaction to Rivaroxaban like you are getting, it's certianly pretty rare most of us on it really have no problem other than the initial gastric upsets when we start.
As for taking you off anti-coagulants (not blood thinners they don't thin blood) I completely agree with your consultant, sounds like a very risky path in my view you need to try one of the other NOACs or warfarin of course. Your GP is almost certainly wrong here it's all about irregularity, and nothing to do with a fast HR, go back to your EP or Cardiologist urgently or ring the anti-coagulation clinic.
Aspirin is now known to be worse that useless for AF. Worse because it increase the risk of gastric bleeding without any gains, it does not protect from AF related strokes, being an anti-platelet not an anti-coagulant.
I understand you have other challenges, but please reduce this risk, find an anti-coagulant that works for you.
Thank you Ian so much for replying....I know I must do this now....since becoming ill life has overwhelmed me...I will speak to my GP on Monday...I hope, but I also have an MRI booked and for a long time now I can only managed one thing a day...and that's on my good days...thank you again...it's such a comfort to correspond ♥
So sorry to hear of your reaction to xarelto. This is really just to let you know that you're not the only one. I can only take warfarin and that makes me itch! Do ask to try the different Doacs and push for a quick turn around if you have any further bad reactions.
hi there, I also take Rivaroxaban, only since February and I had a bad bout of vertigo which lasted through 5 days and hasn't recurred but was horrid. Having said that I have had odd occasions of labrinthitis in the past but never lasted as long so perhaps the rivaroxaban is the culprit, can't be sure. I understand the fear, mine has started to abate. Yoga certainly helps calm the mind and gives mental relief and confidence so maybe try this and I hope uou get some inner peace. Trust you will not always be in this place. Your mind is stronger than you may currently feel. Trust and believe taking each hour by hour if a day feels too long. Hope this helps.
Really sorry you are feeling so unwell. Just wondering if your GP knows how low you feel. In our area you can access "talking therapy". I also understand that if you are feeling so poorly at present this probably would be too much at present still important to share how you feel though. People here will listen. I'm sure your cats listen too without giving good advice!!
My cardiologist took me off aspirin because he said it wasn't giving me any cover against a stroke. I decided to try Rivaroxaban and so far, so good. I think an anti-coagulant is vital for AF and PAF sufferers. These conditions are scary and personally I will never get used to them. Look after yourself and read up on what is available to help you. This forum is a good place to start. Good luck.
So sorry you are so unwell but please please get anti coagulated I take apixaban and have had no reaction in 3years please don't wish your life away a friend of mine passed in her early 40s she would have given anything to see her children grow up I know it's not easy but I look at every day I have as a gift some are ful of problems some are not look at your beautiful cats and how they depend on you I have a little dog and know no one would look after him like me I know the medical system is different in England but can't you talk to your GP about how you feel I wish you all the best and please know someone is thinking of you xx
So sorry you are so unwell. Yes, there are alternatives, but it's a bit of a journey to find the right one. I had similar experience but Pradaxa works ok for me. I know too how it feels when you think you'll never be normal again, still have those days with other health probs I have but when the good days come you can put the bad at the back of your mind. Just Have faith & talk on here as much as you need. We need each other to encourage and spur us on. In my prayer, best wishes Pat
OMG I feel so bad for you...I too felt like that. I didn't want to live... I was gett a couple hundred atrial irregular beats and 13,000 PVC's a day....I couldn't work, cried all the time...couldn't take beta blockers because of the side effects...got more meds and am awaiting appt to see the doc that does ablations. I have 5 dogs that didn't make me happy either...I was a mess. Then, I decided to try natural supplements as a last resort while waiting ablation. Today, after 3 weeks of declining PVC's, I only had ONE 5 minute session of them, and a couple when I got off the couch too quickly. Not sure yet if I'm onto something or not, but after ending up in emergency way too many times, I am giving this natural route a try. But I don't want to give anyone false hopes and I don't want to jinx myself either ...LOL!...if things keep going like they are - wanting to off myself - into being happy and enjoying life again, I will post exactly what I'm doing. Please stay positive!!!!!! Xoxo
Thank you so much for knowing where I am CatAnn...PLEASE...let me know what natural anticoagulants you take....BEFORE I fell apart I took many vitamins and supplements but now take none...afraid of the reaction with my heart.
As well as A Fib they discovered I have a stenosed Bicuspid valve and a leaking Mitral valve......
I do take Garlic capsules everyday and have a mini Holland and Barrett in one of my kitchen cupboards, but my life is lived in fear, so I won't try anything...even after massive research.
I HATE what I've become...the real me is nowhere to be seen..I want her back, asap! ♥♥♥
I so understand how you feel. Honestly, a few weeks ago, I didn't want to live!! I was even going to be okay leaving my beloved husband and 5 rescue dogs that I can't live without! However, I am not sure about the anticoagulant effect of Ginger and Tumeric and Omega Fatty Acids, formally/medically, but I take all these daily. Now just to clarify, I had mostly PVC's. Yesterday was the first day in years I only had ONE spell of PVC'c and today so far, two small ones that I'd rate a 1/10. They really go away quickly now, too. Okay, so EVERY DAY, I juice all ORGANIC:
2 LARGE APPLES
1 BUNCH KALE
1 SMALL PACKAGE OF SPINACH
4 CARROTS
1/4 RED CABBAGE
3 CELERY STALKS
2 INCH PIECE OF TUMERIC
1 1/2 INCHES OF GINGER
This makes about 4 big cups of juice, which I drink 1 cup or so right as soon as I juice and the rest, throughout the day.
When I wake up: I drop 1/2 K Lyte Potassium in a HUGE glass of water and sip that all day long. Then I take 3 drops of Iodine; 1.5 liquid syringe of Boron (I have osteoarthritis).
I be sure to really watch my exogenous salt intake too!
Along with:
Magnesium 150 mg
Taurine 500 mg
L-Argenine 500 mg
-------------------
Lunch
Vitamin C 250 mg
Selenium
B6
Omega Fatty Acid
CoQ10
B12 Sublingual
(IF I do not take the liquid syringe as above. Secret B12 is more expensive and I prefer the liquid, but I also have the sublingual ones from Walmart which are comparable to a B12 shot from the doctor!)
3 PM
Magnesium 150 mg
Taurine 500 mg
L-Argenine 500 mg
DINNER
Omega Fatty Acid
Evening Primrose
L-Arginine 500 mg
8 PM
L-Arginine 500 mg
Taurine 500 mg
BEFORE BED (around midnight)
L-Arginine 500 mg
Magnesium 150 mg
Taurine 500 mg
Slowly after about 2 weeks, my palpitations decreased until where I am at now.
I will try increasing the L-Arginine and Taurine (both proven medically to reduce or eliminate heart palpitations, by the way) as the dose done in research to basically cure people of this HORRIBLE affliction is:
L-Arginine 3-6 GRAMS a day and
Taurine 10-20 GRAMS a day
I am HAPPY to use myself as a guinea pig since anything is better than the meds they had me on (Beta Blockers/Digoxin/Calcium Channel Blockers....)
Again, I am still keeping my appointment the the ablation specialist, my cardiologist, my GP...but doing this as I go along.
Apparently nutrition is the cause of heart palpitation in 80% of sufferers. THEN...there is the 20% genetic, but doing all the above can still reduce palpitations significantly, from what I have researched (MONTHS at the computer reading research papers, etc.)
Another 2 things I want to get is:
Propinoyl L Carnitine 1,000 mg a day, as it's another amino acid specifically geared to help the heart AND
D Ribose 7-10 GRAMS a day
Okay, so that's my regimen. I am NOT a doctor. I don't know what the hell I am doing apart from what I have researched....keep that in mind...LOL!
But I feel better than I have in YEARS (ended up in emergency about 5 times over the past 2 years because of ongoing palpitations)....wanted to kill myself....couldn't go on with what was happening with my heart...and now I am walking my dogs, biking, laughing...oh, don't get me wrong...the deep depression all this shit brought to my life has not ended the anxiety of me sometimes waiting for another ambulance call, but I am SLOWLY trusting what I am doing because something...something...something is changing....I will keep you all posted as I go into week 3 of not wanting to off myself...
Oh, I still take a baby aspirin at night although I understand that Tumeric/Ginger/Cinnamin/Vitamin E can all do what more/better what the baby aspirin does...but I still take it before bed too.
Okay, that's all for now. My heart is with you (X0) and I really really want you to get better and pet your cats!!
Xarellto work without any problem for my husband. I investigated all possible literature and experiences concerning NOAC, have several MD friends with aging husbands (high, BP, diabetes, etc) and all of them changes from warfarin/aspirin to one of NOACs. Thank for NOACs. It would be better to be healthy but if we are not than we have to choose best possible.
Belle I am sending to you many sincere wishes for improvement of your health. Big supporting virtuell hug !
Re reaction to drugs. I have problems with many anti-arrhythmic drugs. With my EP we had to try 4 before getting a result without side-effects that matter. If the advice is for you to be anti-coagulated then I'd not give up on the others. I'm on Apixaban with no side-effects, except maybe slight tinnitus, not sure it's the drug but I certainly now have tinnitus but not bad, in fact it's quite useful as I can pretend not to hear things sometimes 😄.
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