How to cope with the fear of another stroke

My husband had 2 strokes 3 weeks ago. He’s doing really well. He had no limb weakness - his symptoms were all around his speech, vision, balance and coordination. Most of these have now all but resolved but it has really knocked the stuffing out of him and the fatigue is pretty constant. But I’m finding the most difficult thing is the constant fear of the ‘what if’ it happens again. The sensible part if my brain knows we’re doing everything to mitigate the chances, like diet, lifestyle and medication but the more hysterical part just never lets up.
I know people mean well and yes, I also realise it could have been so much worse but folk constantly telling us how ‘lucky’ or ‘fortunate’ he’s been or how well he looks somehow diminishes what happened.
Just looking to see if anyone has any tips or strategies?

6 Likes

It is trying to see the positive in a very unwelcome event. This might be very little things with progress or just a good day.

Everyone is different in how they get to acceptance of the new you. I found it useful finding out as much as I could about what had happened to me. The understanding perhaps helps that journey to being more relaxed about things.

Time is a great healer they say and I think that is true here as well

6 Likes

Hello @MrsM

Welcome to the forum.
sorry you have had a reason to join us.

Everything you have said is very common sadly

You may find the welcome post tap the blue text is helpful

The anxiety you report is very normal. Having a reason for the stroke is comforting when it is aligned to the medications that you’re seeing delivered -in the meantime you will have to trust that the medical folk have done the right things and are giving you both the right advice. they’re good on the acute care - not so good on the chronic long-term (resource challenges and the lack of a visceral understanding what it is like to live with the after effects) :frowning:

The Magnifying glass above is a very good way of finding the masses of previous posts relevant. Asking questions will always get a reply but searching for previous discussion will generally reveal much much more. Including topic like "don’t you look well” (”thank you. I’m not ill, my brain has been permanently damaged so I suffer with fatigue and cognition and emotional and very many other invisible challenges constantly”)

Please also get support for yourself it’s very challenging to be a carer. It that you have a marathon not a sprint so saving energy, etc emotional reserves etc for next year is important. Also encourage your husband to rest. My wife just had a giggle because she can’t do it to me but the more he rests the more of his energy will be spent recovering what you cannot see (and for @BakersBunny I’m three and a half years not three weeks post stroke!!)

Caio
Simon

Ps also meant to say please do the survey Did ANYONE have classic FAST symptoms

5 Likes

Hello MrsM,

I too question my future. My approach is similar to Nigelglos ; I too have to research and find out as much as I can about my stroke and present condition so I feel empowered and able to improve myself. We would all like to feel in control of our lives, but this is exactly what a stroke teaches us, that we are not completely in control. At least we don’t have the final say, BUT, we can give ourselves the best chance of success, by learning about our shortcomings. If he asks himself ; Do I need to exercise more ? Do I need to stop eating sugar ? Do I need to buy a vibration board ? (good for bone health) and with those questions embark on a healthier lifestyle, then the anxiety will subside, and good feelings will replace unsettled feelings. With time, things will settle, and his confidence will return.

Use this time of doubt for questioning. Finding answers is great, then using those answers to help yourself is even greater. Then it’s time to help others (further down the road). There is always hope, and no reason not to follow a new journey of discovery and wonder. There is everything to live for

Enjoy the journey, together or course,
ciao, Roland

5 Likes

Bore da @MrsM, sorry to hear that your husband had two strokes, one is bad enough. The stroke I had was a cerebellar stroke which has the unpleasant consequences of subsequent symptoms mimicking symptoms of the stroke itself, so I am well acquainted with the fear of a follow up. The brain reacts to this threat naturally, if it feels threatened it will go into fight or flight response. This is a fantastic survival instinct that is extremely useful if ambushed by Ninjas or pounced on by a wild lynx, however, our modern brains struggle with it when it comes to anxiety.

Some of the methods I used to dispel or at least lessen this fear were through Mindfulness, and others were a result of my own mental adjustments to these thoughts. One particular thought that calmed me was that I knew what a stroke felt like when it was in full effect, so I could monitor sensations I had and start to dismiss them as soon as I recognised that they became a harmless pattern, disturbing and sometimes painful, but a relatively harmless pattern. Another thought I would embrace was more existential, and I would tell myself that if I was going to have another stroke there was nothing I could do about stopping it in its tracks and, therefore, it was not worth worrying about, just enjoy whatever pleasure pleases me, distract myself to smithereens and hope for the best. I would also employ a bit of humour to the thoughts my brain was dwelling on, I have a fairly dry and acerbic wit, so despite the darker tone of my humour, it always served to lighten my mood.

The stroke I had was not lifestyle based, it was a trauma to the neck, however, that doesn’t mean that in the future I won’t have another stroke, with about as much chance as anyone else who hasn’t yet experienced a stroke. So, I did some small adjustments to lifestyle, but on the whole, there are many people who make healthy lifestyle choices and they too have strokes for whatever underlying reasons. There are many top athletes who have had strokes. I am persuaded by the view that if you enjoy something, then the benefit of what joy and pleasure provides the body and soul outweighs the benefits from abstinence.

Mindfulness techniques have also benefited me with anxiety about my condition. There is too much to go into for a reply here, but it’s fairly widespread, so the techniques are readily available for anyone. I am also doing some DBT which has helpful techniques for managing the modern brain.

4 Likes

@MrsM Hi & welcome. Sorry to hear your husband has had 2 strokes. Glad he is making good progress. The fear of it happening again is something most of us worry about. There are never any guarantees in life and all you can do is reduce the risk as much as you can. Take the meds, eat a good diet, exercise, stop smoking, reduce/stop alcohol, lower stress levels etc. If you’re doing all that there’s not much more you can do. The worry will ease in time (3 weeks is no time at all) you’ve both had a big shock. Try distraction techniques when those thought creep into your mind…do something you enjoy doing, mindfulness, etc.

Wishing you both all the best

Ann

6 Likes

@MrsM

That fear will only go away when you are prepared to let go of it.
I won’t waste time telling you, but I will assure you that eventually you will get past it.
Being confronted with your mortality is no minor experience but there are other experiences. Try for something that leaves a smile on your face, if you can.
Take your time, be kind to yourself, you will both move forward.

:heart:

5 Likes

Hi @MrsM Just want to welcome you to the forum. So sorry to hear about your husbands strokes and hope he has a good recovery.

As a stroke survivor myself, this is our biggest fear, certainly in the early months post stroke and your husband must be feeling it too.
And lying in a hospital bed unable to do anything to distract yourself from that one persistently invasive question can be tortuous. Unable to communicate, I just myself stories in my head, I watched everyone and everything on that ward to distract myself, I even looked forward to the bland and tasteless food just for the distraction. But my brain’s most favourite phrase has been the “f word followed closely by off” to ward off that particularly intrusive thought, even today. I usually follow that up with going and doing something to continue with the distraction exercise, or think other thoughts or tell stories or sing in my head…which sounds much better than in reality :wink:

Because distraction is the key! Make like ostrich, bury your head in the sand. And I’m not being flippant here or obtuse or whatever, that’s just what you’ve got to do. It does get easier as you get past the 3 month/6 month mark and then a year. I’m over 3yrs post stroke now and the way I see it now is, I could just as easily be run over by a bus in the morning.

Even being on here to help others is a distraction of sorts to me. Because we are all different, with different strokes, different issues, different challenges. But most importantly, every active member on here has survived their strokes!

You are on the outside looking in! To help yourself and thereby your husband, read the many posts on here. Might be an idea to get him to read some too, particularly the welcome post @SimonInEdinburgh mentioned, because I’m sure there things going on in your husband’s head that he doesn’t understand know how to articulate . . . just speaking from my own experience :wink:

As for the fatigue, don’t ignore it, that’s his brain’s only other way of shutting a person down to rest, so it can get on with the most important of tasks, healing! Even if it’s just 5 minutes here, 10 minutes there, an hour somewhere else. His best medicine is to sit and shut his eyes frequently throughout the day, while his brain does some repair and processing. That too will/may get better over time; for it doesn’t, for some it does and for some it just gets more manageable.

4 Likes

A lot of wisdom - as normal EE :slight_smile:

2 Likes

Thank you all for taking the time to reply. A lot of good advice but mostly good to know everything we are feeling is ‘normal’. I will certainly try all the suggestions given.
He’s never smoked and rarely drinks but I have overhauled our diet to keep a check on salt and saturated fats which is at least something practical I can do.
And its nice to find a forum where everyone is kind and happy to help!

4 Likes

@MrsM
Are the med team sure of a cause yet?

2 Likes

Well certainly not that they’ve made us aware of! None of the hospital tests showed anything obvious. He’s to have the heart trace in a few weeks - the one he wears for 3 days, to check for atrial fibrilation. His cholesterol wasnt particularly high though its taken a good few weeks for his blood pressure to come back down to within the ‘normal’ range so possible that could have been an issue. They did warn it might just be a ‘one of those things’ where there is no obvious cause. Not sure if that’s better or worse!

3 Likes

I noticed two things that are concerning for you, however, it kind of brought to mind four.

First, the fatigue: Unless it is very largely excessive, I would definitely be resting. I still have trouble with that fatigue at 3 years, however, I did not listen to what my for certain what my head was telling me, or my body either. I believe there is great reason to keep trying to do both the things one has always done, and to learn some new things (no matter what age one is, and most especially after stroke) as soon as possible. However, doing too much is detrimental.

Also on fatigue: Stoke fatigue is truly rough. For me, it is body certainly, but even more so, it is the thinking that really wears me out. I can tell when I am overdoing it, but I keep pushing to get things done. I should know by now, that if I make a even a tiny, little progress on whatever I have tried to focus on doing while fatigued, I usually have to go back and do it again, after resting, because I didn’t get it done right. Just rest. (I have never had cancer, but have been with many people who have. I would liken the fatigue to chemotherapy or dialysis (which did me in while I was on it, even though I was only laying on a bed each time).

Worrying about another stroke: Yeah…that. I suspect, as a family member and/or caretaker, it is much different than for the person with the stroke. I may get some flack for this one, but I also suspect that fear is mostly harder for the loved one, than for the stroked. Or maybe that just depends on their way of thinking. I suggest talking about it together if you are able. Some people can, others can’t. I have watched others suffer and worried about them due to illness that is either painful, deadly, or both. Especially when you are with someone you love, worrying about what might happen hits one right in the core…and hard! As the patient, however, for myself…I was comforted knowing that I will pass at sometime, and when I do, stroke is not anywhere near the worst way to go. Generally quick, relatively painless, and while I knew something wasn’t right at some point, I didn’t really have any fear to speak of, just felt odd and concerned about other people’s worry. Losing oneself to passing is one thing, losing someone you love is quite another. That is painful and scary. You have both just had your world turned upside down in the blink of an eye.

The third and fourth question you brought to mind are, How can I help? and where do I turn? For me, it was actually hearing me, not just listening, but asking for clarification to make certain you understand. And a bit of tip toeing around me was likely necessary, but not so much it would scare me. A hard line to toe. An example: I absolutely loved having attention (but I have always hated attention on me). So when friends or family came by and someone was willing to rub my feet, or listen to some music, or speak with me, or get me a drink. It was fantastic, but at the same time, I felt a bit selfish, and worried a little about how bad things must be for me to have so much attention. (It was in my case). I found my personality changed quite a bit, most especially after the early period. First much more demonstrative in my love…not only giving it quietly as I always had, but saying it, showing it, for those close to me and any stranger who came around. I went from introvert to extrovert in a flash. Then later came a bit of impatience and anger, mostly not appropriate. And then apathy for awhile. Followed by depression/anxiety. Fairly back to my norm, minus some patience, and quite a bit more vocal. Each of us is different, but any changes either of you notice should be noted and if problematic, shared with doctors. Talking about it helps, either with one another, in a stroke or carers group, or with a therapist as well as with one another.

I hope you will be open with each other about your needs and concerns. While he is fatigued and possibly fearful, and may or may not have other concerns: you also are affected not only by what is ailing him, but in very likely having to pick up extra duties he would have normally done for awhile, and your own concerns and what this change means for you and your own life as well as life together. I hope you will be certain and get plenty of rest and support for yourself. Stress is just the worst. Worrying about you isn’t going to help him, anymore than worrying over him has helped you. There is a carer’s group here but I am uncertain too much info on it, so @BakersBunny is the place to ask about that.
Hoping only the best for you both. This is a good place for either or both of you to get some answers to the questions that will come up along the way, and support. Many here will know way more than I about available services you might need or social events you may be interested in joining.

5 Likes

Wow @DeAnn
Super contribution
:slight_smile:

1 Like

Ok well they wouldn’t keep things from you deliberately but may not have passed everything on clearly and properly.

I’ve recently found out what my notes say about my MRIs Which serves as example of the fact that the medical folk record things in dense jargon that they exchange with each other and rarely think about the communication to the folk who could actually use that information to plan long term life/ anxiety determining/ relieving decisions. It would be as well to ask when you find a cooperative one :slight_smile:

If he’s having a 3-day heart trace that suggests that they don’t know the cause so are starting with cardiac investigations - I don’t think you said explicitly it was an ischaemic stroke?
A hole in the heart or PFO has about a 25% chance of being relevant, 3 days may not pick up AF (is he an angina sufferer?), It seems likely that they’ve done a blood works so HDL and LDL and other platelet factors and blood pressure - look at the back of the eyeballs is also another cholesterol indicator but I’m not sure if it’s a significant test they certainly tested it with me as part of research project looking to detect risk factors.

Ultimately you may never get a reason - I didn’t. Psychology explains we are sensitised to things that happened recently and that the search for rationalisation attributes things to causes we can articulate. We tend to be unfearful of things we don’t know of that are relevant and overly fearful of things we do know that aren’t relevant - But that’s a fact of life that we can’t change but can live with if helped with mindfulness techniques.

Caio
Simon

2 Likes

DeAnn, that is so helpful and very insightful. I have caring responsibilities for my 93 year old mother who is on palliative care and a sister who, shall we say, is not exactly keen to step up and take some of the pressure off there. So I’m trying not to get too stressed by that situation so as not to have my husband stressed about me being stressed! But as you pointed out, I wont be much use to either if I don’t take a bit of time out occasionally.
It really does help having people on here who fully understand.

2 Likes

Yes both strokes were ischaemic - just getting my head around the vocabulary! And no, no angina. No previous health conditions at all - well none that we knew about. So as you say, none that we knew we should have been worried about.

3 Likes

You’ve as much need to be concerned for a falling meteor or a rogue driver - many strokes are the result of a combination of rare factors that if we were truly aware of the possible combinations we’d curl up with crushing psychosis from the possibilities.

Trust the meds, accept it happened and therefore marked the end of an epoch and the beginning of a new one, embraced this new era and live life to the full (with a new found appreciation of how ephemeral and delicate the status quo is :slight_smile: )

Caio
Simon

3 Likes

Quite honestly you don’t need people telling you how lucky you are or it could have been worse you already know that. It doesn’t stop the anxiety with every little headache twinge or anything else. All I can say is you do feel stronger as time goes on but it’s not a quick fix am thinking of you.

4 Likes