Post TIA

Hi,

I have decided to join the forum as I am finding difficult to confine in family and friends.
I have been diagnosed having a TIA… this started back in May where I felt unwell and my heart beat dropped down to 48 and i started to faint… I then started having dizziness spells and loss of balance. At first the doctors related to heart problem but after doing full check they thought it was vertigo and prescribed with medications. Over a week ago I was having breakfast and got up and had complete loss of feeling on my left leg and numbness on left arm. It resolved within 20m. I managed to prevent falling by holding myslef and calling for help. Ambulance came and did checks but said all my vitals were fine and told me if i was worried to go to A&E. After 3 days of trying to understand what was wrong I got refered to TIA clinic .I was in absolute shock! I have only turn 45 and I am always keen in adhering to a healthy lifestyle (eating healthy, exercising).
I have been given medication and told I have to take it for life.
I have recently been experiencing a lot of muscle pain but any touch on my skin is painful, i also feel extremely irritated. Anyone has experience the same? There are times I cant stop crying and I can’t sleep worrying that I may have other episodes. I get confused at times with words and cant find the words to place in sentences. There are also days where i feel extreme fatigued. I am currently of sick for 4 weeks but I worried returning to work may aggravate my condition as I have a busy work load, not only that with experience short memory I wont be able to perform at my job.
I haven’t told my children or parents, as I do not wish to worry them, but my husband sister and best friend are aware of.
I am disapointed on some affirmations from my husband, first he stated he didn’t believe I had TIA and some other disapointing comments that I have been given 4 weeks off work not because there is anyhting wrong with day to day activities but simply because I’m not allowed to drive.

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Hi @AXav
Sorry you’ve had reason to join us but welcome now your here

Nothing You’ve said above is unusual. We’ve had other posts this week from people with TIAs and strokes saying that they are not believed. Also the expressing some surprise that the emotional impacts are much greater than the physical deficits but yet very little or nothing is ever said or done to prepare us & family or remedy them

A strategy is to find posts that resonate with your predicament and share them with your family and friends to show them that what you are experiencing is very common. The Welcome post explains many things including how to use the magnifying glass to search for relevant posts

Even a TIA takes many months to overcome but I wonder if there is such thing as a TIA because the T stands for temporary - How long are those time scales? This amused somebody this week

It sounds a little as if you may have had more than one neurological event. Unfortunately the reliance on fast is very misleading

Hang around and share more and we will respond to signpost other useful info

Caio
Simon
SIG

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I had a full stroke but like you, I had weird feelings in my right arm/really didn’t like being touched etc.

I have since learned this is a good thing as your brain starts to make the connections again. Within a few days mine settled as full use of my arm came back.

That said, did you have an MRI? To make sure it wasn’t a minor stroke and not a TIA? That is the only way to truly know. Many people here and in general are fobbed off by healthcare professionals as ‘it’s just a TIA’ when firstly, a TIA is serious but secondly, it might have been an actual stroke.

  • sorry I should add, as a younger person with a career, I would say check your works sick leave policy and max it out. 4 weeks for a neurological event is nothing. I’m still off and it’s 10 weeks today, planning another 4.
  • And to @SimonInEdinburgh ’s point about TIA, I don’t believe in the UKs common diagnosis of ‘you’re back to 100% in less than a day’ narrative.
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Hi @AXav

Welcome to the community, I’m sorry to hear about your TIA.

There’s some information on our website about TIA which you may find useful, you could maybe share this with your family in the hope that it can help them to understand what you’re going through. you can find the information here.

I hope you’ll find this community helpful for your recovery, there’s a lot of knowledge here that you can tap into whenever you feel you need any answers or even just a rant!

If you need anything whilst you’re using the Online Community please don’t hesitate to tag me using my username and the @ symbol.

Anna

@AXav Hi & welcome to the community. Sorry you’ve had cause to join us.

Can I ask if you’ve had an MRI? I’m wondering whether they have ruled out a stroke as opposed to a TIA. Either way a the symptoms you describe are pretty normal & should start to resolve over time but how long that takes varies from person to person.

Initially after my stroke i felt pain worse but that isn’t so bad now. The irritation & crying is quite usual too. You’ve had a major Neurological event so it’s not surprising really.

Fatigue needs to be managed & you’ll find you need plenty of rest & this is important in the early stages.

It’s a shame people around you aren’t being more supportive. Maybe you could show your husband some of the info on this forum? People can’t truly understand unless they have experienced it.

With regards to work I woukd suggest seeing how you are after 4 weeks if you’re still struggling then it might be worth taking some more time off.

Any questions you have please ask away.

Best wishes

Ann

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Hi Ann,

Niece to meet you and im sorry to hear you suffered a stroke.
Yes I had a CT scan and an MRI. I saw a neurologist during my episode as originaly they thought it could be MS and the neurologist told me he would send me for an MRI and next think I was told I had an appointment next day with TIA clinic. I was in complete shock when the consultant explain what a TIA is and the care I needed to prevent a stroke in future. I left the hospital without asking many questions as I was processing through. I shortly broke into tears in the taxi. There is a history of stroke in my family, my mum had a minor stroke that only got picked up years after on a MRI scan and my grandad passed away having suffering a stroke.
I have been doing a lot of research and reading all the information in here. I am having severe mood swings where I just start crying, then i get really angry and snap easily for litle things! I am going to take it easily and see how I feel next few weeks.
It was interesting when I was in hospital there was this group of women sharing their stories and how unfamiliar we all were with the symptoms… I had spells of dizziness and loss of balance back in June and I was told I had vertigo and prescribed vertigo medication…but only the weakness of my left leg and arm prompt it to be diagnosee with TIA! Awarness is not only required within society but with the medical field!

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My stroke started with dizziness & balance issues & i naively thought i’d just got a virus. I guess a lot of symptoms overlap so many things it is difficult to diagnose conditions at times. Took me 4 days to seek medical advice & then i have to say the Dr i spoke to told me, over the phone, that he thoughtvi’d had a stroke. I guess i was lucky to have thar positive experience. It came as a complete shock though as like you was in my 40s & fitter than i had been for many a year.

Things should settle for you in time. Just take time to absorb what has happened and listen to your body.

Best wishes

Ann

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Take it as a positive thing. It’s scary now but a TIA is a warning shot, something a lot of people don’t have the luxury of unfortunately.

You are now on meds to reduce your chance of a full blown stroke and you will likely make life changes to further reduce.

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@AXav Your diagnosis and possibly your family’s difficulties of understanding may arise from the fact that stroke is very hard for anybody -excuse the ironic pun - to get their head around and significantly harder for those who haven’t had one.

You might share the reflections in this thread with your husband as something for him to consider as background to understanding the trauma that you have experienced (and it sounds are still suffering through other people’s inability to accept). The emotional side is the bit of the iceberg below the water line - maybe he’s discounting the bit he can’t see - the captain of the Titanic had an analogous problem

There is a continuum

We’re currently at the stage where much of medicine is science-based - which has created an illusion that it is all science-based.

Pretty much anything to do with the brain is currently a mix of speculation, scientific hypotheses that don’t all mesh together or account for all of the cause and effects, and ancient folklore - even the name stroke as in ‘Stroked by the hand of God’.

My MRIs show I have had multiple strokes to the brain
My experience is that I’ve had periods of feeling spacy (which I once described to a neurologist as stoned and that’s forever enshrined in my notes now!) those Silent Strokes may - in hindsight have contributed to some word finding difficulties but at the time any symptoms disappeared in an hour and left no residual impact that I was aware of. Should they have been labelled TIAs? given that an now an MRI can show the tissue damage done They were strokes with less observable features than a classically defined TIA

So I think we can say strokes to the brain range from observable but undetectable by the sufferer through to terminal, and maybe completely overlap with TIA territory.

What we lack is a systematic naming convention; therefore there are people who have had the same experience and been given different labels and people who have had different causal experiences and are using the same received labels

It reflects the state of the art as it currently stands and it leads to things like the FAST acronym being repeated when it should be ditched in favour of replacements such as S.T.R.O.K.E. Did ANYONE have classic FAST symptoms - #100 by SimonInEdinburgh

There is a valid arguement that says FAST is simple and memorable and STROKE while more inclusive is less memorable.
A good media person would be able to build a message that said FAST is indicative but not exhaustively reliable - It would be so welcome if (large) organisations in the stroke sphere took up the case on this one. It could be a campaign with media coverage!
The SIG will push for better messaging - After all it won’t cost more. It won’t take more effort. It will just deliver higher value for money from the same cost and effort with a potential reduction in the number of strokes experienced & the delays in correctly treating ambiguously presenting neurological events.

@AXav - time and again stories on here show that a stroke doesn’t impact one person but it impacts the whole social cluster and that healing is the last stage in the series Shock Anger Resistance Acceptance. Without getting through the acceptance stage healing is very difficult

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I work in comms and media and once I feel fit I intend to try and get through to at least smaller local charities about messaging.

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I’m on the neurological alliances communications working group

It’s an affiliation of about 100 neuro charities many very small - there could be interest in your skills ?

As an aside today is the last day of the neurological alliance neurosurvey
https://bit.ly/MyNeuroSurvey2024

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I completed the survey :slight_smile:

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Hi Simon i completed the survey.

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Hi All,

I have been feeling really dizzy lately and I was out walking on Tuesday when I felt dizzy and my hearing was really strange … my daughter was talking next to me and it sounded like farway, muffled and ecoing. I sat down straight away and eventually i felt better after 40m. Has anyone experience the same? Im freaking out as I had the same symptoms before I had my TIA.

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Hi @AXav

The only advice we can give you that is reliable is “go and get yourself checked out” :frowning:

I get these sort of funny things happening more than monthly. Most are subtle. Possibly there’s one washing over me at the moment :frowning: occasionally they’re very intrusive like last Sunday morning.
In my first year I went to a&E and this year (yr 4 for me) I’ve been too (twice)

I have a follow-up Next week at the local hospital where I’m hoping to get mri

Mostly now I don’t go because the standard process is I wait for 13 hours in a corridor to get somebody shrug shoulders at me say “don’t know either, But you did the right thing coming in”

Dizziness can be caused by your medication, postural changes such as standing up etc.

Caio
Simon
SIG

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Thanks Simon. I have been in to see my GP this morning and his referring back to the clinic for further checks as it can be another TIA.

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Good the GP referred you on :slight_smile:
Yes it can be a sign that you’re having a TIA :frowning:
You should discuss risk factors and responses and any suspected underlying causes that would benefit from further investigation

Beyond that there is little you can do except take your meds and enjoy your life

I wish you well

Caio
Simon
SIG

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@AXav good to hear you have been to your GP and they have referred you to TIA clinic. Always best to get these things checked out. Hopefully you’ll be seen in clinic swiftly.

In the meantime take care and hopefully it was a one off.

Ann

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