Latest meds.

[Pabba]

Sotalol side effects are killing me. I was on Bisoprolol but they put me on sotalol after a 16 hour AF attack. I have had many episodes of full blown Paroxsysmal AF for years now but lately it has morphed into a less aggressive mode. It is more of a continuous Arrythmia where I get one or two ‘good’ beats and then one or two missed or ‘skipped’ beats and on top of this comes extra or Ectopic beats, these really thump in my chest. Feeling tired and weak and Im getting Reynauds in my fingers and toes now too. Does anyone know if there are new af or anti arrhythmia drugs out there? I’m on a long waiting list to see an AF nurse at the Royal hospital Derby. Can’t even get to see a Cardiologist now it seems in spite of me writing to them personally asking for help. Thank.

[pottypete1]

Sotalol and Bisoprolol are rate control drugs not rhythm control drugs.

There are rhythm control drugs but you must see an EP Cardiologist to get them prescribed in the first place.

NHS rules allow you to ask to be seen at any hospital in England. It may be a difficult conversation with your doctor but you will have to be determined.

The other alternative is to get a referral to an EP privately. Not easy if you don’t have the financial ability. If you can get a private referral it will cost approximately £200-£300 tops.

Your EP can then return you to the NHS system.

It is very sad and upsetting in this country that we have such a post code lottery where AF care is concerned. I live in a different part of the country near a centre of Cardiac excellence and I hadno such problems being referred an EP.

Remember, be determined, you need to sort this out.

Pete

[Pabba in reply to pottypete1]

Thanks for your advice Pete.

[CDreamer]

I can totally understand your reluctance about taking Sotolol, I refused it when offered.

We seem to have got into the thinking that because we have a condition, such as AF then we must have treatments and if those treatments improve your QOL then great - but if they don’t ??? What seems to be lacking is helping us to cope with the uncomfortable sensations, the palpitations and the fatigue and the breathlessness etc. I have learned to accept them, slow down, rest more and adapt my life accordingly. Part of that is ageing as I am not sure how I would have been had this been suggested to me 10 years ago when I was skiing and sailing competitively and scuba diving etc but I have learned gradually to adapt and to change my activities to suit my condition.

It would be up to your doctors to suggest alternative drugs - I just wondered if you had considered just not taking anything?

Drugs for AF are for normally for symptom control. I can’t take any drugs anyway and so I find I am feeling much better overall not taking anything and just sitting out the episodes and doing slow breathing and relaxation techniques.

Sometimes the medicine is worse than the disease.

[heartbeat4 in reply to CDreamer]

Sorry to here you are feeling so unwell try and get to see an EP privately if you can.There are so many people with AF who's quality of life has been badly affected. The fatigue has stopped me from doing so much.It just seems that as long as the stroke risk is covered we are then left to get on with it. the treatments offered are to say the least poor Its time for a new way of treating this debilitating condition We need a (CURE)

[Pabba in reply to heartbeat4]

Thanks heartbeat4, appreciated.

[Pabba in reply to CDreamer]

Thanks for your help CDreamer, appreciated

[Pabba in reply to CDreamer]

Thanks CDreamer, appreciated.

[Hidden in reply to CDreamer]

I made the same statement " treatment can b worse than disease". Thankfully I got put back on pip, which I love. Sotalol and I didnt get along, even reduced dose. Daily flecainide was easier but I was still a zombie

[Buffafly]

Sounds as if your circulation is being affected. If you get any chest pain or discomfort go to A&E. Another drug sometimes used as rate control is Diltiazem, not sure if your GP can prescribe it.

[Pabba in reply to Buffafly]

Thanks buffafly, appreciated.

[Hidden]

I was put on sotalol initially and I tried to tolerate it but gave up after 4 months. I believe it is a combination rate and rhythm drug. It can make your hands and feet cold.

[icklebud99]

You must go to your GP and Insist the Cardiologist is contacted or Cardio Secretary, you writing or emailing can go unchecked as it piles up in this day and age of NHS cuts, however your GP emailing or calling usually does the trick. I left voicemail on the Secretary's phone twice and had no reply through human error. Sotalol is not recommended by NICE guidelines in England but still used in Scotland. I came off it for similar reasons as yours, I was on Bisoprolol which was horrendous, fatigue, breathlessness, cold feet etc. etc. then changed to Sotalol which was much the same now I am on Atenolol, Flecainide and Riveroxiban and I have little or no side effects but when im in AF it is unbearable so now am waiting on Cryoablation. Good luck and hope this helps, stand up for yourself and push push push.

[greg35]

I found Flecainide and Nebivolol has helped me enormously with my continuous ectopics 2 ablations didnt work for me!

Regards Ingrid

[Babyr1996]

Hi pabba so sorry you feel so unwell. Hope u get sorted soon. I live in burton on Trent so not far from you I assume as You are under derby city royal hospital but I’m under Glenfield at Leicester EP there brilliant and not too long a wait list either well there wasn’t in November last year I’ve seen EP 2x and had pre op and op for CTI Ablation in 2 weeks time!! It is patient choice so back to your GP and get referred somewhere else Derby is a nightmare of a wait list!

I wish you well xx

[Hidden]

Complain, I know it's difficult if you aren't the type of person who does it but unfortunately we live in a country where those who shout the loudest get heard first ! You are entitled to be seen in a reasonable time frame ! Write to your local trust if necessary! Good wishes

[Hidden]

After an AF attack a couple of years ago the A+E doctor changed my meds from bisoprolol to sotalol. I tried to tolerate it for a while , but it was hell. I emailed my EP to ask his advice.

He phoned me the same day and couldn't understand "why the hell" they had done that as sotolol is no longer recommend for AF .

I did also learn that in higher doses Sotalol has both Rhythm and Rate control properties

[Juliesk]

Hi Pabba

I have had 3 ablations since 2014 and although the AF was dealt with in the first ablation, I still suffer with Atrial Tachycardia. I was recently prescribed Sotolol as a weeks Zio test (similar to a holter test) showed that I had some brief ventricular arrhythmia’s. As a result of this, I had an ICD implant 7 weeks ago. Because of the ventricular risks my cardiologists felt that Sotolol would be better than the Bisoprolol/Flecainide combination that I have been on for years.

Almost immediately after I started taking Sotolol I had the worst arrhythmia’s I had ever experienced - 160bpm for between 41-44 hours every few days. At my 1 month ICD review the consultant confirmed that this drug was not right for me. I’ve now been put back on The Bisoprolol/Flecainide combo and I haven’t had an arrhythmia for the last 2 weeks

You need to see a cardiologist to review the meds required for your condition. Like others have suggested, if you can pay to see a cardiologist and skip the queue then it would money well spent - I had a month of hell on this drug and life is so much better now

Best wishes

Julie

[Janith]

Hi ... l am on sotalol ... zero side effects. I have PAF ... when diagnosed with afib, l was prescribed sotalol along with high blood pressure medication. One of the meds is causing nasal irritation and eye irritation ... it seems controllable. But very annoying. I must research to determine which one is causing this. I don’t feel tired from sotalol. Lots of energy. A little moody l feel on occasion. Good luck to us all. This is truly a scary condition. I have had two afib attacks in one year. Only two in my lifetime. I live in America.

[sugaredalmonds in reply to Janith]

I too take sotalol, I am pleased to hear someone else has something positive to say about it!!

As this whole af is scary enough without scaremongering as in

‘sotalol is no longer recommended’

Obviously it’s not going to suit everyone the same as any of the other drugs, but for some like me it’s a case of ‘better the devil you know’, besides I often wonder regarding research / not recommended etc if the main thing isn’t just money driven by the pharmaceutical companies, I am sure some of you on here will disagree & will want to shout me down, but hey ho!