Ongoing issues.

Hi everyone. I have now been in permanent AFib since the onset in July last year but can't seem to get clarity on the consequences for,and implications of , permanence. Also, have suffered intermittently from headaches but these have definitely become more frequent and more intense; they are worse at night: I spent all last night awake,and mostly up, with a nasty headache ( still there) and which did not respond to even strong painkillers. To round off, I spend a lot of time asleep, being exhausted, and also have balance problems which have got worse. I am about to see my GP again after further blood tests, but any views would be most welcome.

[jennydog]

Did you view Dr Gupta's video about AF progressing which Steve posted yesterday? I thought that it helped to put things into perspective although I do appreciate that we're all different.

[CDreamer]

You say you are in permanent AF - I assume that means that you have had treatments which have failed to cardiovert you back into NSR - even for a few seconds? In which case I don't believe there is anything to be done except meds to improve your quality of life.

It sounds like the headaches may be entirely different condition to the AF - have you been to GP to have them investigated - I wouldn't think of taking any painkillers unless I knew for sure what was causing headaches bad enough to keep you awake. It could be simple spinal misalignment but could be something else so worth getting checked.

[Hidden in reply to CDreamer]

Have just managed to see GP an hour ago. Interesting take on permanent AFib : most people with AFib have the permanent variety and it is less harmful than the intermittent types. I have been treated for 'spinal disease' as my cardio consult callsit, for three years and we have ruled that out as a cause of headache. She has reduced bisoprolol from 5mgs to 4.25 to see if it reduces fatigue and has prescribed sumatriptan to check for/treat migraine which I had 30 years ago. They shoot horses you know.

[CDreamer in reply to Hidden]

LOL!

Least your ur SOH still works.

I couldn't get on with Bisoprolol at all and felt much, much better without it. Never helped the AF anyway.

[Hidden in reply to CDreamer]

Well, guess what? After two doses of sumatriptan the headache still there in spades so I don't have migraine. As to what I do have the Lord only knows.

[cali111]

Although I was not treated for migraines the drug Gabapentin was prescribed for my pain but it also treated migraines and seizers so it might be worth pursuing.

[Hidden in reply to cali111]

Thanks Kali. Gabapentin one of many drugs given me over past 3 years for spinal disease. Not only did it not tackle pain but it had awful side effects and then withdrawal effects. Part of many of our problems is that of unrelated co-morbidity ( if that's the correct phrase ) and consequent interactions of medication.

[Marion62 in reply to Hidden]

Hi AJFitz,

I was originally on 1.25 bisoprolol but even this lowest dose made me so tired and my legs just didn't want to function. I changed to diltiazem and have been so much better. I too am in permanent AF.

I was also interested to read about your experience with gabapentin. My pain consultant has just asked my GP to prescribe this for my severe shoulder pain - I was apprehensive about this medication but now reading your post about side effects - can I please ask how bad were the side effects?

Thanks

[Hidden in reply to Marion62]

Hi Marion. Bad, and didn't get at the pain so I came off by agreement with Pain Clinic and went onto Fentanyl with similar results. The withdrawal effects for both as bad as the side effects : confusion, wobbly legs, just felt diabolical. It's a year ago now since came off and memories of pain etc soon go, thank God, but Google Gabapentin and Fentanyl together and follow threads. If my memory is correct they are both epilepsy drugs but used off licence for pain relief. Be aware though we are all different and these drugs clearly relieved the pain of some patients or they would not be prescribed. If you tell your GP some eejit on a website told you to avoid these he wont be impressed! Suck and see but don't put up with side effects, if they come, as long as I did.

[Hidden in reply to Hidden]

I am an eejit! The second drug was Pregabalin NOT Fentanyl (which I also had but as patches). Apologies but the comments do apply to gabapentin and pregabalin.

[Marion62 in reply to Hidden]

Thanks. I already had my doubts about this medication before I read your post. I have reacted badly to drugs in the past. All GP prescribed pain killers make me sick so I am very careful and find out as much as I can before starting any new medication.

[cali111]

I too only managed 6 tablets and as you say they did not tackle the pain. Now I rest when it is too bad and potter around my house when it lets up. I decided that pain killers are not for me. I have had a bad spine since 23yrs old and am now 73 so had a lot of years to come to terms with intractable pain. Take care and I hope you have a future where you can cope.

[Hidden in reply to cali111]

Thanks Cali.

[EngMac]

Did you ever visit a chiropractor? A good one might be worth consulting to see what could be possible. They are the spine specialists. Fixing the spine often fixes the headaches. There are also bones in the head that may need adjustment. A chiropractor trained on how to deal with these might find a solution.

[Hidden in reply to EngMac]

I was under a consultant orthopod, a consultant pain clinician and all types of complementary medics including chiros - none of them eased the pain ( which was all in the spine/torso, not head). The problem was/is spinal degeneration.However, for reasons no-one can explain, when I was ambulanced to A + E last July with cardio issues which subsequently included bad headaches the spinal pain virtually disappeared. Very odd. Not many people withdraw a blue badge application but I did. It's an ill wind and all that.

[Hidden]

Update on headaches. GP clearly worried about chronic, almost permanent, headaches more than any other symptoms - possible stroke concern??? Referred me to a Neuro Consultant and got appointment in just under three months. Good old Benenden funded a consult with same guy within the week. And guess what? Immediately diagnosed medically induced headache. The slow release tramadol that Pain Clinic consult put me on is causing the headache! After 2 years vile back pain I have been largely pain free for a year - apart from headaches! He's writing to GP with plan to wean me off tramadol and substituting other meds, including amitriptyline, which I used before to no avail.When I told him that it seemed to me Pain Consult was poisoning me his response was that there are many pain consults but few Neuro consults! Why am I pessimistic re. The non-return of back pain? The other cautionary note is simply to underline the need for specialists to pay greater heed to comorbidities and not just focus on their specialities.