unable to relax to sleep.

[Baileybum12]

hi everyone, I had my ablation October last year which has now failed, and am back in Afib. I have this terrible creeping feeling in my arms legs and body, which comes on when I try to relax to sleep. It has come on in the last few weeks, I am hardly sleeping at all. As you can imagine it is extremely debilitating. Anyone else had this, and what was it? Been told by consultant that I can’t have another ablation and there is nothing he can do?

[jeanjeannie50]

Sorry to hear you're having this problem.

I found that when I took Bisoprolol I felt really well but had a terrible ache in my legs. Are you taking this drug? I had to go back on to the beta blocker Metoprolol, don't feel so lively on that though.

Jean

[Baileybum12 in reply to jeanjeannie50]

Yeah been talking 10mg Bisoprolol, for years, never had a problem with it, but!!!

[pottypete1 in reply to Baileybum12]

To me that’s a high dose no wonder you are struggling with it.

Regarding another ablation ask why! If you don’t get a satisfactory response get another opinion.

I have had 7 ablations because my EP would not give up on me.

I have now been free of AF for 2 years now after 30 years of misery!

Pete

[Baileybum12 in reply to pottypete1]

Thanks I am awaiting his response letter now, will follow up on your suggestions.

[Vonnegut in reply to pottypete1]

Gosh! Your experience certainly puts mine into perspective! At least I had well over 70 years of reasonably active healthy life before this struck but great to hear you are now free of it!

[Vonnegut in reply to Baileybum12]

How different we all are! The lowest dose of 1.25mg of Bisoprolol was too much for me to take - told to stop after three days as my pulse had gone down in the 40s!

[KMRobbo in reply to Vonnegut]

Same with me - i was passed out 40 minutes after taking even that dose!

[Vonnegut in reply to KMRobbo]

Gosh! Far worse than me but I was saved by a pharmacist who when he handed over the first pack took my phone member and said he would call in a week to see how I was getting on or that I should pop in to see him before that if I had any problems- so three days later I did and he took my pulse and told me to stop taking it immediately! He must have phoned the surgery as a doc there saw me almost immediately, took my pulse and agreed!

[Cookie24 in reply to Vonnegut]

What was your heart rate when the pharmacist checked?

[Vonnegut in reply to Cookie24]

He didn’t say but it was in the low 40s and one of the other dreadful docs actually said later that was “quite normal”! It did explain why I had been feeling lacking in energy though I also acquired chronic fatigue at around the same time (no doubt as a result of the same shingles episode when I got the pain before the rash and couldn’t get an appointment when an antiviral might have prevented both). But I have made it to 80 and retained my brain though have something dodgy found by a recent scan and shall find out what that is on Thursday!!

[Vonnegut in reply to KMRobbo]

Just read that again! It shows how very different we all are and how crazy it is to treat us as if we were all the same.

[KMRobbo in reply to Vonnegut]

Yep, I am just thankfull that they did not throw me 5 or 10mg as some people are on as I may well be dead!1.25mg dropped my resting hr from 70 to low 40s ( even after I woke up). My GP agreed with me that it was no good for me, as she thought I would go low 30s when asleep which was too low ( for me). She tried Atenolol and that was better but I was still very tired and sleepy so after a few weeks on that she moved me to Verapamil a calciuum channel blocker which was fine.

[pottypete1 in reply to Vonnegut]

I was told to come off Bisoprolol because of a slow heart rate, same dose as you.

Pete

[Vonnegut in reply to pottypete1]

Snap!

[BaileyC57 in reply to jeanjeannie50]

Metoprolol , I took for four years and made me dizzy and not sleeping well! I am on Nebivolol , and not dizzy at all!

[jeanjeannie50 in reply to BaileyC57]

That's good. I asked my cardiologist if I could try Nebivolol and he laughed and said that wasn't for me. I wish I'd asked him why. I think Metoprolol makes me tired. My GP is doing blood tests before deciding what might be better for me.

[BaileyC57 in reply to jeanjeannie50]

I did not know that blood test would deciding whether you can take this meds!

[jeanjeannie50 in reply to BaileyC57]

The blood tests are to see if the results show why I'm feeling so tired, before blaming the Metoprolol.

[BaileyC57 in reply to jeanjeannie50]

Metoporolol made me dizzy and tired!

[LowT]

most likely from when you are experiencing the AFib. I have the same.

Some individuals bodies are super sensative in experiencing this. Same with sensing any ectopy, such as PACs, PVCs, etc. I am one of those as well.

I don’t know but time many dampen that creepy feeling as body acclimates or desensitises to this state.

[BaileyC57]

How many ablation procedures have you had?

[Baileybum12 in reply to BaileyC57]

Just the one, but the consultant found more problems during the procedure than he had expected and said that he wouldn’t recommend further invasive treatment, am waiting his appraisal later now.

[Ennasti]

Have you had a blood work up lately? A lack of Vit B12 causes creeping under the skin. I had it and it was awful! If you’re on a PPI, you could have low B12 levels.

[Baileybum12 in reply to Ennasti]

Thanks, good point I will check it out.

[Johndwynn-1]

First of all find another doctor and get a second opinion and a third if you need to. I had the same trouble after one of my ablations, I’ve had three. Mine came from the anesthesia and the feeling I got when I went out. It felt the same way when I almost drifted off to sleep. I would wake up, thinking I was about ready to have another ablation and it freaked me out. I gradually got better, and was able to sleep so there is hope for you. Try relaxing techniques and eventually it will work. Good luck.

[Mugsy15]

I'm very familiar with the sensation you describe. It's basically Restless Legs Syndrome, but affects the whole body.

Some nights it doesn't happen, others it's really bad. Plays havoc with my sleeping. I have had a successful Ablation but I've had RLS since before that. I no longer have AF and I don't take any medication so I can't blame either of those.

In the last fortnight I've cut down on my beloved coffee consumption even though I didn't consider it high anyway - I would typically have 4 or 5 instant coffees a day and now have 2 normal and 2 decaff. I still get flesh creep at night but it's much reduced and I'm sleeping better. Too early to say caffeine has been contributing.

Wish I could help but all I can do really is empathise!

[Baileybum12 in reply to Mugsy15]

Thanks for your kind comments sounds very familiar! Your description is exactly as I feel, now to find a solution?!

[CheriAlli in reply to Mugsy15]

Sadly I have to drink decaf… I know that even a small cup in the early am will reek havoc with my sleep schedule the same night and possibly put me into Afib.

[Karendeena]

I struggled with sleep after my ablation but this has improved. I do wake agitated with the creeping feeling but mainly in my stomach. I have put this down to anxiety

[Ablation7]

I have been feeling a little off lately. Cramps in legs and tingles. I was also restless and waking up a lot at night. Then I had a lot of unexplained bruising. Went for bloodwork yesterday and turned out my potassium was critically low. Was sent to ER for potassium treatment and put on a supplement. Hope you figure it out soon!

[WildIris]

Magnesium tablets can be good for muscle cramps.

[ian16527]

It could be anxiety related as the af is back. Happened to me after major surgery. I would get a choking feeling at bed time.Truly awful