Has this happened to anyone?: Been having... - AF Association

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Has this happened to anyone?

Espeegee profile image

Been having Afib episodes, been referred but not yet got an appointment via NHS. This morning got up to go for my weight training, driving along when suddenly I experienced a very strange feeling, as if I'd been struck a blow on my head, kind of like a dull electric shock might feel, and I felt as if I'd been switched off and on again, the sensation seemed to travel downwards and then went. I pulled over, sat for a couple of minutes, didn't feel anything but a bit scared then carried on to the studio.

Once there I was going to get out of the car but realised I was a bit dizzy, a little like vertigo but without the whirling. Got out and told my trainer I felt odd and he then took me home in his car. The dizziness lasted a while, I just sat still, had some tea and eventually it's gone. I'm worried in case I had a TIA but I didn't have any other problems. My head was a tiny bit sore but not enough to need pain relief. The only thing similar on the net brings up are head zaps caused by stress/anxiety. Anyone had anything like this?

69 Replies

You should see your GP asap and probably stop driving until you know what happened.

Espeegee profile image
Espeegee in reply to bantam12

I tried the GP, one appt. for today which went as I was typing in my problem. None are face to face still only telephone ☹️

bantam12 profile image
bantam12 in reply to Espeegee

You could try 111, if it was a TIA you will likely need treatment to prevent another TIA or full blown stroke.

bantam12 profile image
bantam12 in reply to Espeegee

Be sure to tell whoever you see that you are self medicating with Levo, it could be relevant to your episode.

Espeegee profile image
Espeegee in reply to bantam12

I've been self medicating for over a year, would any problems not have occurred before now?

bantam12 profile image
bantam12 in reply to Espeegee

Not necessarily, thyroid diagnosis and treatment isn't easy, what are your latest test results ?

Espeegee profile image
Espeegee in reply to bantam12

Last NHS results from July were Free T4 17.8 range 11.0 - 23.0 TSH 0.23 range 0.35 - 5.0. There are fuller Blue Horizon results on my profile from earlier this year. I then added more Levo but stopped it again after a couple of months as it didn't seem to make any difference so no extra since June.

bantam12 profile image
bantam12 in reply to Espeegee

Your T3 level is more important than TSH and T4. I'm not saying the Levo is the culprit and thyroid may or may not be the cause of your symptoms but it needs to be considered.

Espeegee profile image
Espeegee in reply to bantam12

It was 5.37 range 3.1-6.8

Auriculaire profile image
Auriculaire in reply to Espeegee

Why did you add more Levo when your TSH was below range? If you are not converting it would not make much difference and may indeed cause problems. But from the result you have posted it seems ok. TIAs can be very subtle. I had one in 2019 . My right leg felt weak for a few minutes and I did not feel quite "right". I had none of the classic stroke symptoms they tell you to look out for. If it wasn't for trying to write a shopping list the day after and seeing my writing all squiggly I would have ignored it. As it was my GP was sure I had had one even though the brain scan showed nothing.

Espeegee profile image
Espeegee in reply to Auriculaire

I added more to try to raise my T4 and because the weight calculation allows me to theoretically go as high as 150 mcg. I don't have a conversion problem thankfully. From past results my issue pointed to central hypo T4 was right on the bottom of the range.

Cookie341 profile image
Cookie341 in reply to Espeegee

Please be careful with thyroid meds. I don't have an answer for you about your stated question but I have a fib & am hypo thyroid. At 48, after years of hypothyroid i had "thyroid storm". My thyroid was overactive. Too high thyroid meds caused it. I was in hospital because I went into heart failure. Not trying to be dramatic or crepe hang etc. I hope you are feeling well & get some answers~

Espeegee profile image
Espeegee in reply to Cookie341

I might if they ever get the CT scan done, 4.5 hrs and no nearer. I may stop the Levo anyway, although I've felt much better since I took it I still have problems which pushing it up higher didn't fix so I dropped back. Now im thinking I might drop it altogether just in case it's created a problem.

bantam12 profile image
bantam12 in reply to Espeegee

If you are going to stop taking Levo you have to reduce your dose very slowly over several weeks otherwise you will have even more problems.

Espeegee profile image
Espeegee in reply to bantam12

Thanks, I didn't know that.

rosyG profile image
rosyG in reply to Espeegee

Definitely ring111

carneuny profile image
carneuny in reply to Espeegee

I can well relate to that! GP's surgeries are becoming as much use as chocolate fireguards in front of a blazing winters fire.

Ring 111, as advised above if you can’t speak to your GP - who should be available for emergencies.

In your position I would be dialling 111 at the very least. You need to be assessed now . Please do this now or speak to your GP urgently.

BobD profile image
BobDVolunteer

Pease ring 111 or better still go to A and E and explain. It may just have been a blood pressure blip but I would not want to risk that as an explanation. I take it you are not on anticoagulation? I also suggest that you avoid both driving and gym work until such time as you have seen a doctor and been properly assessed and diagnosed.

Espeegee profile image
Espeegee in reply to BobD

👍🏻 I agree with both those suggestions. I've had bad experiences with 111 in the past when I had a really bad bout of heart arrhythmia, one of their crew even asked me why on earth was I crying. When I said I was scared she just ignored me. They sent an ambulance but it was 2 hours later, by which time it had calmed down.

SuziElley profile image
SuziElley in reply to Espeegee

My one and only dealing with 111 was after a PE and then a bleed into my knee. They were absolutely useless. I ended up ringing 999 and paramedics came. They stayed with me for two hours until they felt it was safe to leave me with the understanding if I was no better in an hour then to go to A&E

Espeegee profile image
Espeegee in reply to SuziElley

I guess with the paramedics it's very hit and miss, OH had a nasty fall in the street, 999 called who had a recorded message saying how very busy they were, said they would send an ambulance. After nearly 2 hours still hadn't come, hubby was cold, shaking and it was getting dark. Gave up and took him myself causing a great deal of pain getting him into my car and out the other end. He's 71 and a diabetic, had shattered his elbow, now has 2 plates and many screws and a long scar. Whilst his care was fine, leaving him to wait so long was pretty awful for all concerned.

SuziElley profile image
SuziElley in reply to Espeegee

I feel for you both. I only called for help this time because I didn’t want to face the pain of going to A&E by car again. Initially an old knee replacement had failed, the knee dislocating. This in the middle of the night. OH drove me to hospital, in much pain! COVID restrictions meant he had to leave me outside in the cold in a wheelchair for someone to come and collect me. He wasn’t allowed inside at all. Then when I developed the pulmonary embolism I went by car again….. Just couldn’t face it again but actually did end up going back in, by car! 111 was just useless. In fact I asked to speak to a supervisor in the end, but still no help!

Please seek immediate medical advice, or you're always going to wonder what it was. Better to play safe than be sorry. It does sound like a TIA but let the experts check please.

Jean

Just to reiterate what others have said, please ring 111 now or visit A&E. it is better to be safe than sorry and at least you will know. In fact I would say bypass 111 now and go to A&E. even though you feel better A&E will be able to see if you have had a TIA and give you the appropriate treatment. Please let us know how you get on. x

Espeegee profile image
Espeegee in reply to Frances123

I will, thank you.

kkatz profile image
kkatz in reply to Frances123

Having experienced a few Tias they don't necessarily show on scans particularly some time afterwards but A & e should do a scan which might show anything else .Not sure your symptoms are like any I have had .Iam sure if you rang your surgery and explain you would get an urgent consultation with your GP. However mine rang neurology last time & they said go to A & E .

Espeegee profile image
Espeegee in reply to kkatz

I guess I'm more worried because my Mum had a TIA and then a few months later a catastrophic bleed from which she didn't recover. She had hypothyroidism, Pernicious Anaemia and took beta blockers, digoxin and warfarin.

kkatz profile image
kkatz in reply to Espeegee

My Tias were blockages rather than bleeds .Read your update re in A & E.good luck.

That is why it is so very important to ne on a rhythm medicine but even more important a anticoagulant...probably for life. I had Afib for nearly 40 years. Take prompt action.

Lilypocket profile image
Lilypocket in reply to Smileyian

But the worrying thing about anti- coagulants is if you suffer a bleed they will make things catastrophic if you see what I mean. It's a rock and a hard place. I take Pradaxa ( but not at the moment due to recent minor surgery and another booked for September).

What I would do? Ring my GP, urgent contact please, speak and then get face to face or video call. But probably ring 111. They can ring ahead to A&E and do some of the triage, and shorten delays and make it easier to see the right person next time. That has been my experience. Don’t let a bad experience with an insensitive numpty put you off. (Newborn grandson became ill last week, within 2 hours of phoning 111 he had seen a specialist was on a children’s ward).

My GP surgery is overwhelmed with patients who have been delayed getting routine hospital treatment. None of them intend being “chocolate teapots” (another thread) on the contrary they are very stressed trying to juggle everything and also stop waiting rooms becoming super spreaders against Covid. If needed, they do offer face to face but usually after a phone call.

Good luck, hope you can get a proper consultation and sadly best not drive or do strenuous exercise.

Espeegee profile image
Espeegee in reply to FaberM

I am currently in A&E and have been triaged. Just got to wait now. Not many in fortunately.

Zardar profile image
Zardar in reply to FaberM

At my surgery you ring get a telephone appointment the same day then if doc needs to see you you go the surgery or doc comes to you . Thus has gone on all through the pandemic . I for one would not fancy sitting in a surgery full of ill people at the moment .

Ducky2003 profile image
Ducky2003 in reply to FaberM

If the "chocolate teapot" comment was related to my post from a couple of days ago, that was referring to one of the arrhythmia nurses at the hospital not a nurse at my GP surgery........ just to clarify.

Nannysue1 profile image
Nannysue1 in reply to Ducky2003

How are you now?.

Ducky2003 profile image
Ducky2003 in reply to Nannysue1

About to remove a holter monitor so thankful for a non hairy chest 😁. Cardioversion booked for Friday. Just another week of excitement and fun 🤣.

Nannysue1 profile image
Nannysue1 in reply to Ducky2003

Lordy what a time you're having of it. Fingers crossed that the cardioversion will sort it. 🤞

Ducky2003 profile image
Ducky2003 in reply to Nannysue1

Thanks. I think I'd be bored without all the excitement 😁.

FaberM profile image
FaberM in reply to Ducky2003

No! A post today on this thread saying GPs useless. I have met chocolate teapot clinicians - including recent health visitor who told daughter you couldn’t get chicken pox from shingles!

Ducky2003 profile image
Ducky2003 in reply to FaberM

Ah. When you said "(another thread)" I thought you were referring to mine but you've now said "this thread " all is now clear.😊.

Lilypocket profile image
Lilypocket in reply to Ducky2003

I think it was a reference to Carneuny's comment 😉 who just might have nicked it off you! I love it as an expression just so funny. 😂

I'm sad you have had such a scary experience but you have got excellent advice here. We are not medically qualified but I for one have used 111 three times for my heart condition and always had brilliant help. I was taken to A&E by ambulance too and even though I felt embarrassed (we hate to make a fuss) I was always reassured it was the best thing to do. Please don't take a chance . 🙏🌻

I'm here thanks Adelaide. Bloods done and an ecg so far.

I agree with many on here - that definitely needs checking and it would seem that 111 is your best port of call, as GP appts are like hen's teeth. All the best.

I would say that this sounds neck related rather than anything more serious but that your GP should see you, face-to-face. You can, in the UK, insist on this so far as I know. Alternatively, go to A&E, but this isn't ideal in my view as they are so busy (presumably because people are by-passing their GPs).

Steve

I sympathise with your predicament as I had the same. NHS care can depend on your condition, and a certain mindset depending whether it is ‘age-related’ and/or chronic, and more importantly your postcode. The NHS can be said to be one of the best in world BUT only in some respects. It’s patchy as it’s very much a postcode lottery. I couldn’t fault the care I received in Surrey for 15 years (plenty of access to teaching hospitals is a plus wherever you live) and you expected and were seen by your nominated doctor. The situation could not be more different further North where I live now. Increasingly Practices now have more part-timers - and I’m not specifically referring to working parents. A recent poll of medical students shows many plan to work part-time as soon as they’ve qualified. Slowly but surely as an end user much of my faith in the superiority of the NHS has slowly evaporated along with expectations of a consultation with ‘my’ family doctor. It’s a lottery who is available to see you (if at all) and the level of expertise cannot be guaranteed. Hypothyroid patients like myself battle with doctors who are ignorant of the workings of the Thyroid so I am shunted off to be seen by a nurse with a ‘computer algorithms that says ‘NO’ I cannot be experiencing symptoms (despite the fact that the official guidelines state that the patient’s stated symptoms are key !) This all leads to a vital loss of continuity and the slow demise of the doctor-patient relationship. I am of an age where I can compare community healthcare from the early fifties to the present and it is nowhere near what it used to be. It may be that many GPs don’t view being a community doctor as a vocation (demands a certain mindset) and their aim is to be a partner in a business which they can ‘shape’ to their personal lifestyle. Having been in persistent AFib for several months, prescribed beta blockers, blood thinners and feeling really ‘off’ with poor energy etc etc and no sign of a hospital appointment on the Horizon, I dipped into holiday money and had a private consultation with a Cardiologist who arranged an ultrasound within 4 days. I am now on a NHS hospital waiting list for a cardioversion (6 weeks to go) as the ultrasound showed that whilst I had AFib my heart was healthy and therefore a good fit for the procedure. I wish I had taken that step 3 months ago and I don’t regret the cost one bit!

Espeegee profile image
Espeegee in reply to Loafinabout

I agree with what you say. I, too, live in the North and there's certainly a lack of continuity. I have had some success with one or two GPs but some are just arrogant toss pots who are always going to believe their truth over your experience. Part GPs are very much a thing too, it's just not acceptable to try to run vital services with part time staff, the Police has gone the same way sadly. I lived in Surrey too, as you say, there weren't such problems back then.

I think I would have gone to A&E

l ought to mention that public transport is O at night in this neck of the woods. When I first had symptoms I drove to a cottage hospital (it’s clinging on despite being under threat) they put me on an ECG for an hour and diagnosed AFib. However the ‘policy’ is that they cannot treat me and so I had to be transferred by ambulance to another hospital 25 miles away, leaving my car in the car park. I waited a couple of hours for the ambulance then after being transferred waited in a corridor for 2 hours when a nurse put me on a 4 lead ECG for 1 minute. The doctor came along an hour later and on the results of the 1 min ECG declared me clear to go. Although I saw the ambulance driver hand a nurse the printout of my earlier ECG it was apparently ignored in favour of ‘their’ result. By this time it was 10pm. There is no public transport after 6pm. Fortunately I had a credit card to draw some money and got a taxi back to the original hospital car park at a cost of £40.00. It can’t be overstated that the health (as well as the wealth) divide in the UK is shocking. Generalising, I am able to recognise the disparity in quality of care between the North and the South (with exceptions for the pockets of excellence here and there as I did volunteer at one time for Healthwatch.

Yes, last year about just before Christmas time, but my vision was affected. I just went to bed and it was gone in the morning. I did ring my GP and that day I got an appointment to see a consultant at the stroke unit. He did not find anything wrong and said I had not had another stroke or TIA from the tests he ran. I had an MRI scan and blood tests. Maybe it was due to stress? I have no idea really.

All the best.

Roy

I'm hoping that will be me, I've been here 4 hours, I'm losing the will to live any way lol

I had a bad a. fib . episode start with a big bang to the back of my head which is the worst headache l have ever had in my life. It lasted for 4 days. I thought if that was going to happen every time l have an episode l can't bear it. I looked it up on the Internet ( l know l shouldn't ) and apparently it could have been a thunderclap headache. Luckily l have never had another one. It was just as if someone had struck me on the back of the head with a heavy object. It didn't come on gradually like most headaches. I never got it checked out , because it hasn't happened since

As usual Bob’s advise is spot on.

You're in the right place. Your description sounds just like my friend's TIA. Good luck.

Espeegee profile image
Espeegee in reply to Montsauton

Thanks. I'm going to need it if I'm here any longer. Dehydration is setting!

Hang on in there you are in the best place. They might be waiting for test results coming back

My update is that after waiting in A&E from 8.30 until 3pm I have left. I was triaged as soon as I got there and had blood taken, an ecg done and saw the doctor with half an hour. She decided on the CT scan and since then I have sat and waited. I wasn't told I'd have to wait, there were no updates and when I asked after 4 hours if I'd been forgotten the receptionist said no idea, they didn't have anything to do with it as they are urgent care and I'd be slotted in when there was a gap. I have a private appointment at another hospital just before 6pm so I couldn't wait any longer. I'm not happy at all, it's no way to treat someone who is already anxious and worried. £40 wasted in taxi fares too.

Loafinabout profile image
Loafinabout in reply to Espeegee

I also went through a shambolic system as in my post above. The NHS is going to Hell in a handcart is the expression I think.

Another update, the hospital doctor rang to ask where I was because he was ready to do my scan, I told him I wasn't there and why, he said if I came back he would do it, I told him I couldn't but would be happy to come back tomorrow as long as I could have a time, he said no they couldn't do that. He asked if I would come for an outpatient appointment, I said yes, he said he'd call back. He called back to tell me it wasn't hospital policy to do that, sorry. He was a bit flummoxed and asked me how I was, much the same. If I got worse, fell over or became sick I should go right back. Hmmm of course I will, just got to hope I don't have to. I'm off to see the other chap at 5.45pm and will update him and if he offers me a scan I'll accept even if I have to pay.

Shazzot profile image
Shazzot in reply to Espeegee

I’m waiting for an appointment at the palpitations clinic. I’ve had an irregular heartbeat for several months and my 24 hour heart monitor showed my heart rate was anything from 32 - 176 beats a minute in that time. I also have a feeling of pressure in my head most of the time and I can always feel my heartbeat constantly, even when lying down. I take 100mcg of Levothyroxine daily and have done for 16 years. I’ve also been on antidepressants for 20 years so any of my symptoms they always put down to anxiety

Espeegee profile image
Espeegee in reply to Shazzot

That's an easy cop out for them but not so good for you. I despair.

I had a TIA about 3 months ago, and, like auriclaire had none of the classic symptoms. I thought it was my broken shoulder to blame, but physio said no. Didn’t see a doctor for 3 days (couldn’t get an appointment) and it was another fortnight before I got a ct scan etc. Good advice from everyone, so hope everything is ok. Something like that is really scary, and I do sympathise with you. Take care 🥰

Its the transition from a fib to sinus rhythm and how long your heart takes to change, I use to do it a lot. You need to explain this to your Doctor. Mine was because of the medication Sotalol making my heart beat to slow and then going in and out of sinus rhythm. Scary shit I know. Hope you figure it out, afib can be a monster until you get it under control.

Another update for all you lovely people, I've returned to A&E who agreed to and have done it, it's clear but to be 100% sure they are going to do a lumbar puncture, so not looking forward to that.

Espeegee profile image
Espeegee in reply to Espeegee

Hopefully final update. I had the CT, it was clear, the suggested lumbar puncture didn't happen, I had another ecg, I was seen by a dozen different people all asking the same questions and having me doing the same stroke tests. An MRI was mooted, for which they were talking about admitting me, but needed the consultant to make the decision. She finally arrived at 7pm, I had been sitting on a chair in a cubicle, alongside lots of other quite sick people in adjoining cubicles, for hours. She decided I didn't merit an MRI but would refer me for a 3 day monitor and if it shows Afib will recommend anti coagulants. That's the shortened version lol, I was there for 10 hours!

Tough couple of days. I hope you have a good sleep tonight.

Espeegee profile image
Espeegee in reply to baba

Thanks.

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