Frogee needs general help and advice ... - British Heart Fou...

British Heart Foundation

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Frogee needs general help and advice please…..

15 Replies

Hi all, I hope u r all v well .smiling in your hearts if possible ……

4 weeks ago after 2 days (!,) on a and e followed by 2 days on a heart ward my diagnosis was..

myocarditis , bright pericardium ( pericarditis ? ) ..basically my T count was high and then was less the second time so not heart attack even though felt like one ..

my medical report does NOT say when I can exercise again ! For 33 YEARs I have been coping with ptsd from army war service by being a fanatical fitness guy ….that is how i came off a long list of garbage meds after 1 yr on a army psych ward …

the net says 3 to 6 months before can ex again ! That is already a death sentence for me , that is HOW i cope with a long list of medical and psychiatric probs from my war service ..

If the DR doesn t tell me how do I know when can ex again?! I don t want to scar my heart muscle etc or make my heart weaker and then be susceptible fir a heart attack !

I was so proud to come of all the meds over 30 yrs ago…now my ptsd probs r all coming back and I hate being addicted to meds for the rest of my life …and they made me obese and made something small not work anymore..

That existence was a slow lingering death for me ,….I cannot live that hell again .

the ex regime helped me stop nitrazepam sleeping tabs after 20 YEARS ….with ex i could sleep for a few hrs every 2nd or 3 rd night which was enough to function as a stepfather and husband…

Now i can t ex to sever exhaustion and fall into bed for a few blessed hrs of sleep .

Frogee is now crying cos I am scared to speak to surgery cos i don t want to have my life controlled by psychiatric meds again …

So I am damned if I speak and damned if i dont ….

I have been walking every 2 nd day for maybe 15 miles cos I know everything will go bad if I do nothing …..a symptom i have is 24/7 tinnitus with internal head vibration same as helicopter blades…

i was in a heli crash so u can imagine the importance of being busy etc. to help me cope

there were no sighs of a viral i fection at all. but my fathre has IHD at 52 , i am 58 now…

anyway Frogee will appteciatev much any general help and advice .

Like most folks i want to live as long as i can but how do i know WHEN i can ex again , and also how the hell do i cope with my psych probs if cannot ex and i dont want meds that make me fat , unproductive , and be all the things I HATED about my self driving my depression worse…

Sorry to ask , I am sure most ppl have it alot worse than me ,,

peace and love to all..

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15 Replies
Maxbar profile image
Maxbar

hi Frogeeplease it's not a death sentence far from it something is obviously amiss but look at it like a bit of timely advice , until you or they get to the bottom of your problem, keep walking and look after yourself, and don't Google everything, don't overdo it and keep talking👍👍 it will all sort it self out if you can keep strong and get the correct advice ,the mental anguish is the hardest part to deal with that's why we are all on here,looking for help advice and getting things of our chest ,Good luck .👍

Czech_Mate profile image
Czech_Mate

Good advice from Maxbar. Very much agree that the psychological side of things is the hardest to deal with. Hard to explain to those around you what's going on when you're not sure yourself, but it's important to try. Keep with the walking and try to appreciate the being outside and observe what's going on, then at the end of the day think of 3 things that had a positive effect on you; no matter how small they seem they are important.

We are with you. CM

Gigi70 profile image
Gigi70

Helo Frogee

I am in the same position after Heart attack as my heart rate is jumping up and down and awaiting the result of 24 hour ecg,

If you get hold of your cardio rehab team via your GP they will monitor your readiness to exercise agsin. They also have a psychologist who will help you with the psychological side of inactivity. I am unable to do the exercise side of cardio rehab but have begun the psychological help.

Really relate to the exercise helping mental health. I’m a cyclist a yogi Walker etc. I also have ptsd from childhood.

Michèle

in reply to Gigi70

Gigi70 I am sorry to hear your situation….pain from ex was my only release .That i s how i came off largactil and other zombie making meds.my only therapy for 30 yrs after a whole yr on an Army Psych ward as in patient has gone…body pain makes my mental pain manageable…now i amdrowning again…I hope u rtn to be the shining star u are v soon…me? Back to crying alone in the dark ….Love and Peace

HHH2017 profile image
HHH2017

Hi Frogee, what an awful time you've been through. But you have been managing and you will again.

Unfortunately Myocarditis takes time to recover from & REST is the most affective medicine! The timeline is very independent varying with the severity of your own case.

It was a year for me before I was allowed to start cardio rehab. But when I did it was wonderful and helped me immensely. Probably 4 months before I could even walk outside my flat. Do ask at follow up appts about cardio rehab and/or medical exercise groups in your area.

I would recommend contacting the BHF nurses for medical advice about your own situation.

For now please find a way to REST and don't rish overdoing it. Perhaps invest in some crossword puzzles, suduko or similar. Watch some films you've never gotten round to seeing or read. A new hobby for this interim period of recovery will I hope help make it more manageable.

Phone number & email attached for BHF nurses. Best wishes.

BHF nurses email
nextadventure profile image
nextadventure

As an ex-RAAF member I salute you. PTSD from service has beaten many others.. while you have done an amazing job in rehabilitating yourself and you can do it again. Fact is, it can't be by vigorous exercise - YET. It is likely to be 6 -12 months which MUST be determined by the cardiologist through their regular reviews of you. In the meanwhile, you have to accept this in order for your heart to recover, but continue to get outdoors everyday. Find a low level exercise that the cardiologist says is safe. And find a new way to keep ok: art? music - you could even learn an instrument or sing? study of any subject that interests you? taking up some voluntary work (could even be writing letters for a cause that is important to you)? tutoring kids? low key travel? and as you will be so aware, socialising regularly and having a good laugh is essential.

A GOOD psychologist (used to dealing with PTSD and physical illness) would be helpful. The other thing to keep in mind, in order to reduce your fear - just in case - is that the medication used now is not as it was used in the past. You can and would refuse any sleeping tablets; most medications used for depression do not put on weight and can be tailored to avoid other nastier side effects; you would not need antipsychotics; etc. Hopefully you won't need anything, but many of us have had antidepressants after heart pathology, and come off them again later on.

This is not a re-run of your PTSD circumstances. This is a temporary change in lifestyle. Make the most of it to do things you might not otherwise do. Yes, it is a huge blow and I really, really feel for you. The next four weeks will not seem as long as the last four, and each month you will be improving. You're bloody tough. Now just open a new door and head that way for a while. I do genuinely sympathise.

BC4ever profile image
BC4ever

Frogee. You have done the right thing posting and talking about your recent and past experiences on here. It's a wonderful, supportive community, who are always here to listen. If the walking is helping you, keep it up. Walking is one of the best exercises you can do. But don't push it too far yet. Take your time. Get out into nature, look around, take it all in and enjoy it. It may help you to sleep better too. Build it up slowly, taking the time to savour your surroundings and all the different wildlife you will see. Slowly, you will start to see an improvement. Good Luck to you.

Deejay62 profile image
Deejay62

Frogee, I don’t know anything about this subject but please let us know how you’re getting on. Do contact the BHF nurses if you have questions that you feel are urgent regarding your health. I believe someone has already posted their number.

All the best

in reply to Deejay62

Deejay62…..Thk u ..tbh i am drowning .my therapy of 30 yrs has gone…my go to was pain…sorry if sounds like i am mad person.pain set me free cos nothing else worked for me ever….even when had angina i walked 2 miles and got bus to a and e ….i was walking that edge before and now i might fall off…a few months ago I spilled boiling water on my feet and high knee sprinted on the spot for. 2 hrs…after that my release was incredible…until i did similar again…I am truly sorry if my talk is annoying / upsetting ….thk u everybody …..also got lump found in lung same time at a and e so lung cancer possible as well…Deejay62 thk u buddy .tbh i am social recluse for many yrs to cope with ptsd , so social anxiety real for me …Love and Peace.

Deejay62 profile image
Deejay62 in reply to

No you don’t sound like a mad person. What you’re saying I’ve heard on here before. You do need to talk to a professional though. On here you can get a lot off your chest but a professional can more help you. I think you are going through a lot, in fact too much. I don’t know how I would cope.

You can keep posting many do.

If you don’t know where to turn you can always talk to the BHF nurses for medical advice to put your mind at ease. Their number 0808 802 1234. It’s a free phone number and they’re available Monday to Friday 9-5

fishonabike profile image
fishonabike

While I understand your need to get back to exercising I agree with @HHH20 - rest and restricted physical activity are central to recovery after peri- or myocarditis

the inflammation caused by these conditions damages the heart's ability to use fuel and oxygen, so it cannot pump efficiently - rest is absolutely necessary to allow recovery of the affected areas, just like it is with a muscle sprain - this should be followed by a very gradual and stages return to activity to rebuild stamina and strength

research on athletes affected by covid-related heart inflammation led to some guidance being drawn up look up "Returning to Physical Activity after Covid 19" by D.Salman in BMJ Jan 2021 (Google will find it), there is a very useful summary chart

good luck

in reply to fishonabike

Thk u.Love and Peace fishonabike….

Blearyeyed profile image
Blearyeyed

I feel so much for you Frogee.I assume the fifteen mile walks were things you were doing before the myocarditis?

Let me ask you a few questions to see if I can help.

What exercises do you love to do ?

Are there any other gentle or moderate exercise activities you have always fancied having a go out but haven't had chance to fit in your more strenuous exercise regime?

Have you had the all clear in terms of your infection , and do you know when they will retest you?

Are there any other cool things you like doing or would like to try that could occupy your mind but put less impact on your heart?

You obviously have to take care and can't do the full on stuff you've been doing because even if your infection is cleared the inflammation is still present and can be inflamed by over strenuous exercise. You are a blooming resilient and sensible chap and as you've said you don't want to push it until you go pop , but you do need something to replace the very physical workouts. Just as you used the workouts to replace the medications.

There will be a balance to be found and either local counselling , support groups , guided rehab and physio and potentially options in your local area of activities that you've never even thought of to keep that brain calm , your body fit and the weight down but not overstrain the old ticker.

Give me some answers and hopefully I could suggest some ideas.

Don't give up yet we will find a way , hugs , Bee

in reply to Blearyeyed

Hi Bee, the 15 mile walks are my mild ex…prior to this my go to was 6 strght hrs cardio e.g.skipping 100 x 3 min rounds with 30 sec rests in between…..no ego from me ..i used physical pain to balance off mental pain…i told the a and e about seeing white everywhere after trg and they did not understand the level of exertion to get this symptom …..tbh pain was my game ….again no ego from Frogee.tbh I am scared to stop ex cos my ptsd symptoms way too severe for me …Love and Peace.

Offshore_guy profile image
Offshore_guy

Hi Frogee

I was a fit offshore worker when i suddenly found out my heart had a bicuspid heart valve at 53. my aortic valve was just about to pop but luckily they found it. I used to work out most days, so after the op, not being able to train was excruciating. I was in too much pain for the first 4 months, but after that i slowly started to build up and do what I could. Im 18 months down the line now and do my 500 push ups a day and workout just as hard as I used to.

My advice probably isn;t going to be accepted by everyone, but i'd say listen to your body. Don't over strain it, but if you want to exercise do what you can. Get a puppy, take it out loads. Learn new ways to exercise that help with the head space, you don't have to do the same stuff as before to get the same result.

I'd also be honest to an extent with the professionals. My cardiologist told me after my first MRI I had to stop working out again for 6 months because of a possible highly unlikely thing they'd picked up on it. I flat out refused. She then said she was a cyclist and if someone told her that she couldn't cycle, she wouldn't stop either.

No one knows your body as well as you do mate. Mental Health is just as important as phyiscal. People seem to forget that as soon as something physical happens.

I hope you find a balance mate.

Jim

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