New - after cardiac arrest

[Karenpr]

My husband suffered a heart attack followed by cardiac arrest on 16 July. We were lucky and got prompt attention from passersby and ambulance who shocked and ventilated him. He has a stent fitted spent time in a coma at Kings and is now home having also been diagnosed with diabetes. He has been walking for about 10-14 minutes a day and is fine on the flat. Yesterday when he tried to come down the stairs his legs went into a major spasm and he collapsed on the floor, other than the spasm he was fine. He is now effectively trapped upstairs. Has anyone else had any symptoms like this? Do I need to get hi. Back into hospital, he is adamant no ambulances.

[skid112 Heart Star]

I would think you need to get him to a doctor, he surely cannot stay upstairs forever and needs to have the reason why his legs went into spasm

[Karenpr in reply to skid112]

Thanks, have emailed the neurological and brain injury department at Kings who saw him, will ring the, tomoz and our GP

[skid112 Heart Star in reply to Karenpr]

Good I really think that's for the best, I know it's scary after you get home and every little ache seems like it's the end but he's survived a massive event in his life. If he is willing get him to post on here, he isn't alone there are many on here who share their experiences, lend a helping voice and genuinely are interested in helping.

[Sina-6491 in reply to Karenpr]

I hope your husband is feeling better now.

Tell him we are all thinking of him & send out support, hugs to you both ☺

[legoman58]

WOW ! - he has to see a Dr. Maybe even a home visit by the GP if that is possible. Sometimes the cocktail of meds that they give us afterwards can cause muscle spasms this may have just happened to happen when he was at the top of the stairs. The meds can take a while for the body to get used to. Maybe get him to try coming down on his bottom step by step.

[Karenpr in reply to legoman58]

Thanks even getting onto the floor sends his legs into spasm strangely. He managed to get down the stairs on his bum yesterday and the. Going back up the stairs his legs went into spasm. So waiting for the GP surgery to open.

[skid112 Heart Star]

Hi Karen, not the best news. What meds is he taking? any diruetics as these can cause leg cramps and spasms? have you checked the blurb to see if this is a known side effect? The more information you are armed with the better, hopefully you will get things sorted

[Karenpr in reply to skid112]

Just read all the drugs and strangely Metformin can cause limb spasms. Waiting for GP to call.

[Karenpr]

GP came and has no idea, could be caused by the drugs could be an underlying brain injury. So blood tests needed and a referral to the neurological department for a scan.

[skid112 Heart Star in reply to Karenpr]

Hi Karenpr, no nearer to discovery then, not the best place to be in. Did you get a response to your email to the neurological and brain injury department at Kings? How is your husband feeling? has there been any improvement? And how are you bearing up, must be a considerable strain for you too

[Karenpr]

Neuro replied to my email basically saying call GP or 111, so not a lot of help. In himself he is fine, on the flat he can walk around it's just when he bends his legs to walk down/up the stairs or put clothes on that his legs go into spasm as tho he is having a fit. GP seemed to think it was some sort of electrical fault between the brain and his legs. Until bloods come back they can't point the finger at a drug and until a scan can't point the finger at an underlying brain injury (this is obviously always the worry for someone who had to be resuscitated road side). Me I'm taking one day at a time, slowly working my way through the stages of grief, made it to anger!!!

[skid112 Heart Star in reply to Karenpr]

Focused anger is good will help you to push these people into action I hope

[Franksluckypants]

I found the acute care of the NHS absolutely brilliant, without which I wouldn't be here!

The ongoing chronic care is unfortunately not in the same ball park, where the feeling of being messed about/ anger at lack or poor action you guys are experiencing at the mo is certainly something I can equate with.

Maybe take some comfort that if he was deemed to be at serious or imminent risk then he would be of higher priority and probably seen much quicker? That said if you need to 'escalate' things, I would be getting in direct touch with the cardiologist, bypassing (excuse the pun🙂) the GP and phone helplines!

Good luck!

[Jicci7]

How is he now? Did he have cardiac rehab? They taught me how to stretch

[Karenpr in reply to Jicci7]

He didn’t complete the course as some of the exercises he just couldn’t do due to his leg spasm problems. He has had an MRI and there appears to be no brain damage. He still can’t get down the stairs other than on his bum, going up he can sometimes manage one step at a time other times it’s both feet on a step and hanging on for grim death. He can walk for miles at a cracking pace on the flat, so we are no nearer an explanation and he is extremely depressed about the whole situation. Obviously he can’t get on a train or go up or down an escalator so can’t go to the office. Although I drag him to our local shopping centre and try and get him on the escalators. We have even done a couple of train trips which sometimes end in disaster for him when he needs more than my help to get off the train. Standing still is difficult as well as his legs start to shake.

[barniecroft]

Hi Karen,

Wondered if things had improved for your husband - did they get a diagnosis of the cause of his legs problem?

[Karenpr in reply to barniecroft]

Nope things still the same, had spectacular falls, still can’t get up and down the stairs. Showering is a nightmare.

MRI shows no damage following cardiac arrest. He stopped taking statins as he was convinced they were the cause. He is now on Ezetimibe a type of stain.

Speaking to a counsellor occasionally, having physio fortnightly.

Despite all this he is effectively house bound and very depressed, possibly suicidal but whilst his mother is still alive he won’t kill himself, so that’s one blessing.

Needless to say life is difficult, I’m still in the anger stage of grief and he is stuck in denial. I would like him to do some residential cardio rehab with some in-depth counselling but don’t think this exists. 😢

[barniecroft in reply to Karenpr]

Sorry to hear that Karen,

Is the best way forward through your GP?. I'm sure you have tried - what did they suggest? Home visits for cardio rehab and counselling must surely be something that can be offered in your circumstances.

[Karenpr in reply to barniecroft]

You would think so. We are seeing neurologist, OT in the neurology department, cardiolist and GP. He can get out the house with me, it’s stairs that are a problem.

NHS have supplied a counsellor who speaks to him on the phone occasionally.

We are supposed to have had a home assessment to see what help is available but still waiting as the NHS is strapped for cash and we are not an “emergency”

I guess the major problem is that we are nearly a year down the line and no further forward.

[barniecroft in reply to Karenpr]

Does your husband have any hobbies etc to keep him positive during this period. It sounds like you are both having an awful time. Getting out helps sometimes too, do you have a car for short trips rides etc, i have found just sitting in the car and being driven around helps me a bit

[Karenpr in reply to barniecroft]

He is still working, luckily he can do this from home. As far as hobbies are concerned, golf, travelling, opera and visiting art galleries. All of which are out of the question. Oh and drinking fine wine!!!

Don’t think he can’t get out, he can if I am with him so we do go for walks.

It’s just the frustration of not getting an answer or timescale or even a “this is as good as it’s going to get”.

Hope you are doing okay

[barniecroft in reply to Karenpr]

Yes, things don't move quick do they. I'm coping thanks but feeling the strain, I try to convince myself things will be better in time

[Karenpr in reply to barniecroft]

Good luck and hang in there.

[Zena166]

Hi Karen. Have just read your post. Whilst the 2 things you suggest are maybe not available you should be able to get home based Physio and home visits by a community psychiatric nurse/counsellor. Check out local mental health charities such as MIND or mental health matters. Also go back to GP surgery and ask for referral to cardiac rehab team who should visit to do an assessment and take from there. Not sure what age he is but accessing Personal independent payments may also help to pay for services. Or you may need to go through Local commissioning groups to identify support required. Your local Healthwatch maybe able to help with signposting to relevant places to get support.

In all this what about support for you. Do you have access to support network or respite at all. It’s important to look after you in all of this.

Take care. Zena

[Karenpr]

See the reply above.

I also have the problem of convincing him there is more help out there but he objects to being seen as “disabled” so it’s banging head on door with him and NHS!!!

Don’t worry I take care of myself, Yoga and travelling although I have to put up with the sulks when I come home 😄

[Green1964]

hi is he on statins because when I first started taking them I got horrendous leg cramps my legs would spasm and I fell on the floor I switched statins and all good now so hopefully if he is taking statins he might be having the same problem I had good luck anyway