Intro and sharing experience

Hi, my name is Ana and I live in Portugal. I am English and speak limited Portuguese which was significant when I had a stroke in a public car park! Someone called an ambulance and I was lucky enough to end up in the brand new Stroke Wing of the Hospital. The date was September 8, ‘22 as the Queen’s death was the first thing I remember being told when I gained consciousness. As a fit, “never had a sick day in my life” person, I suddenly faced the reality of being 80 and not knowing what had happened to me. So fast forward past the worst, which was the paralysis of the swallowing which kept me hospitalised for three months. Swallowing is still dodgy and there are still things I cannot eat plus the ongoing failure of the normal saliva output to work normally. I would welcome advice from anyone else who has or has had this problem. Nights are particularly difficult when the spit becomes sticky and thick. As the medication prescribed was worse than the problem, it dried everything up, I stopped taking it. At the moment I just take a statin, thinners and something to keep the bp in check. I still don’t understand strokes, why do they occur and how to avoid another.
I find the forum very helpful as it is reassuring to know that one is not alone in this journey and things do get better albeit slowly. Fortunately my marbles are all working and I hope I think positively and fight the depression and the “why me” useless question. It was also good to know that the constant fatigue is something we all experience and it’s ok to take it easy. I had long ago retired but still kept really busy so the physical uselessness has been very hard to accept. I find some days just great, walk better, can cook lunch without doing something stupid, and see progress. Then the next day I am shambling around, can’t get anything done and feel ghastly. It was comforting to know that this too was normal, two steps forward and one step back. I look forward to reading more progress reports on the first six months forward after stroke. Thank you.

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Giois to read your experience. The common tread is god and bad days and slow progress. It’s ver hard to accept the limitations our bodies now place on us but accept it you have to else you couldn’t carry on!
Good luck.

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@Anav welcome to the forum & thank you for sharing your story.

I’ve not had swallowing difficulties so can’t advise re that. It sounds very unpleasant. Hopefully someone on here can advise.

Best wishes.

Ann x

@Anav
keep strong and a PMA.
great introduction and extremely open and honest,
I wish you well :+1:t2:

Hi @Anav , and welcome to the forum.
I had similar with the throat paralysis, swallowing and saliva mucus like. I never mentioned it at the time so was never prescribed anything. But those issues were for a much shorter time frame than you and it more or less rectified within months. The only thing I found helped a little was drinking lots of water with lemon juice in it to break it up a little…similar to treating that with a cold.

Now I feel I produce too much saliva, I’m like a toddler when concentrating, the mouth has a tendency to hang open and I drool a little :roll_eyes: I’m constantly having to keep a mental check on that one :drooling_face: :laughing:

Maybe it’s just going to take a little longer for you to right itself.

Thanks EmeraldEyes, I’ll give the water and lemon a go. I had a side issue in Hospital where they gave me every test in the book and said I had to have a hysterectomy (there was a pre stroke problem I knew but always was cavalier about my health believing that my body would heal itself given time) so now I am incontinent and water just rushes straight through! What a bore it is getting old and a stroke just exacerbates all the problems as well as adding to them. However, as my husband says, “ stop moaning and get a fatter nappy!” So I do. Any more ideas out there on the excess saliva prob?

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Hello & welcome
You’ve arrived at one of the places where folk actually understand the background issues that contribute to feelings and symptoms and have a reasonable chance of having similar experiences& solutions :slight_smile:

As well as many Facebook groups etc of unstructured discussing there are website appearing like patientslikeme-join link
That help one explore others experiences & medication within topics

At 6 months it’s likely your ending/ended ‘healing’ of the impact on brain tissue and future improvement will be from rewiring (neuro plasticity). I’ve not seen anything on rewiring of autonomic brain function but it must be a thing because - for example - children learn to control there bowels, we don’t use conscious thought to walk etc. So there maybe improvements ‘down the line’ - I’d guess the only way too confirm is the fora like this, the web above, research papers etc.

I specifically googled you’re saliva issue for causal/compensations/treatments in the mean time - there were several articles with lists of factors/ strategies to try as well as Google scholar suggesting research papers & journals - very much more esoteric and niche examination of cause and effect

My personal strategy if I don’t get immediately usefully dialogue with medical staff is to find out the basics before a second /subsequent conversation. That is often more fruitful. Searching for speech and language therapists may also turn up those versed in the topic. Learning the medical term is often (I find) the first step to finding help

On the stroke prevention front the quoted advice is the shotgun approach of keep taking the meds, avoid the risk factors, maybe find the cause of the original event if PFO, AF etc factors where a part of the cause. Often the state of the art of medicine isn’t yet able to be specific though

Good luck on your journey :slight_smile:

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Shwmae Ana, croeso. I lived and worked in Portugal for a bit, many moons ago. I used to visit every year but then had a stroke and that has faltered my overseas rambling. There are all sorts of causes for stroke, and many kinds of triggers for those causes. It also depends on the kind of stroke too. Preventing further risk of stroke will come down to why the initial stroke occurred but not wholly, as life goes on and fresh issues can occur down the line unrelated to our past health hurdles. Finding a suitable routine, scheduling rest periods, and challenging oneself can all aid the rebuilding process.

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Thank you (no name given) but this response jogs me to amplify my question as to what, maybe, causes a stroke. Has anyone been given a specific reason.? My children tell me its because I ate too much butter and sloshed down the wine…both of which are true but not THAT much…maybe just more than I should. But I got to 80 without realising and was never sick, never smoked, normal weight, ate very healthily, very rarely fried food or cakes and rarely ate meat and walked regularly. I had an enormous language problem being in a Portuguese hospital so never had a general conversation with a consultant as to “ why” since there were more pressing issues in the present.
Mine was a carotid clot but no idea whether it was cholesterol or blood. Any information or ideas out there greatly appreciated. Ana

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@Anav i don’t know if it’s the same as yours but i had a carotid artery dissection which caused my stroke. What i don’t know is what caused the dissection. They tell me usually a trauma to the neck but in my case no trauma took place.

Whilst many people do get a cause for their stroke many others don’t. All we can do is minimise our risk by eating healthily, exercising, not smoking etc.

I hope you find the cause of yours.

Best wishes

Ann x

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Hello Ana,
yesterday I was lousy… today my physio was impressed & me too
Ups and down indeed
By the way my stroke was a few days after yours
It was the Queen’s funeral
Ciao, good luck, Roland

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I’ve never had a reason suggested. Apparently I’ve had several but only 1 put me in hospital.
The causes that are ’recordable’ seem mostly to be cardio related
Butter and vino might be contributors, who knows, there could have been any number of factors

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Thanks Mrs. 5K, had you been to the Hairdresser? I read about a woman who damaged her artery unknown to her as she felt nothing, while she was having her hair washed in one of those backward sinks at the Hairdresser!
Best of luck forward xAnaV

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@Anav i had heard about hairdresser sinks too but not until aftery stroke. As it happens I was due to go to the hairdressers a few days after I had my stroke so it wasn’t that. I am very wary when i go now though in case i have a weakness there. My hairdresser is great so makes allowances for me :grin: xx

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Even though I only ever have dry cuts at the hair dressers it good to know that :flushed:

It may be obvious in which case I apologise for stating it
but
there are two fundamental causes of stroke.

one is a bleed normally referred to as a dissection in some part of the brain and the other is a clot.
the causes of a bleed are very different from the causes of a clot -although a bleed may also result in a clot. A clot doesn’t have to have come from a bleed.
the bleed if it’s in the skull will have an effect of its own
The outcomes in all cases share so much in common that they are generally treated as much of a matchness. if you are looking for causes then you have to look for causes that relate to the event that occurred either a bleed or a clot.

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Shwmae Ana, causes and triggers are different. A trigger might be high alcohol consumption or smoking, eating fatty foods and even some prescription drugs. A cause might be HBP, a PFO, sticky blood, trauma, AF, or even just the weakening of arteries. I’ve only mentioned a few, and am no way knowledgeable on all the triggers and causes. The stroke I had was trauma to my neck, either from heavy lifting or neck cracking, but the stroke I had (cerebellar stroke) is rare, only accounting for 2-3% of all strokes.

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Hullo , my name is Gay and I understand you so well . I had my “small” stroke in July just before my 80th . Shock horror , why me a youthful well slim person who simply had high blood pressure without knowing it. My symptoms were so invisible you wouldnt know there was anything wrong . What is wrong is my head which is always too heavy and pressured and makes me feel off balance and tottery . I find the effort of socialising exhausting . There are times when I feel so sorry for myself that I just howl . Another year like this is a deeply depressing thought .

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Hi ANa regarding dryness of the mouth especially at nights, like you I suffer with dry mouth in the nights where I find it impossible to swallow because my lips and mouth are completely dry and my lips are stuck together. I keep a water bottle next to my bed where I take just one swallow to lubricate the inside of my mouth and throat which does the job. This occurs every time a wake to go to the toilet, which can be up to 5 times a night.

I had my stroke back in February last year and still have problems swallowing certain things. I am going to contact my Occupational Therapist for some advice, will let know what she says.

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Hi Gay, having a stroke is certainly a shock to the system physically and emotionally. I dip in and out of the forum when I’m feeling well enough and my vision is in a cooperative mood! I had a stroke in the occipital lobe nearly 2 years ago, which means that basically my vision and balance were well and truly messed up! No outward appearance of having had a stroke (except looking haggard :roll_eyes:). I was extremely fit and healthy and had good BP…… I had moved back to U.K. after 20 years living on a mountainside in the Pyrenees and everyone was shocked that, even at 82, I had had a stroke. It’s been an interesting, up and down journey learning to live with altered vision, the headaches, fatigue, and more headache etc. And the stroke rather toppled me into awareness that youth was no longer on my side (or in plain language, I’m old), and accepting that has been as much a struggle as the stroke. But thankfully I do have a, sometimes outrageous, sense of humour which helps to keep my feelings in proportion. Life is what it is, and as long as I can laugh I’ll survive the rough days. I think dealing with the stroke is easier for me as an oldie as my future is behind me, and I can accept a reduced role, knowing that now my purpose in life has to be turned inward, but with memories of accomplishments and adventures to keep me going……and I’m lucky to be able to find things to enjoy in my daily life; I appreciate the small things, taken for granted things, in life so much more now. Mind you, I do have to consciously look for them at times, and remind myself that it’s still ok to feel sorry for myself now and then, as long as I can climb out of that little dark hole!
I hope things begin to get easier for you, everyone on the forum know how tough it is, just hang in there, and the 1 step forward and 2 back will change. We’ve often made more progress than we think - others can see it, but as it can be so gradual we’re unaware of it. All the best, Virginia

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