Introduction and Story

@GemA hi Gemma glad you find some information we have wrote up on our threads useful. Also great stuff you got your doctor to explain and put some of your questions to rest. In answer to all 3 questions is yes, yes and yes. I and many more have experienced the whoosh on turning your head quickly. Same for headaches you can take paracetamol and see if it helps. Though I’m not medically trained.

Mix up of words ha ha definitely.

Glad you’re having the ecg. Sometimes they give you a heart monitor to wear 72 hours, or for a week (I had both and was fine) it’s just to rule out what caused it.

Anyway hope all calms down for you kind wishes Loraine

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@GemA it’s good you’ve had a good chat with your GP and he’s eased some of your concerns re anxiety. The ECG should show any possible heart issues that can be treated if necessary, so that’s another step forward.

It’s still very early days and your brain is repairing so the dizziness and loss of balance should hopefully improve. Just try to remember to move a little slower when turning, it’s easy to forget as we’ve moved around without giving it a thought previously. If I stood up quickly or turned sharply, as you describe, I would get dizzy, woozy and lose my balance at the beginning, but its so much better now, hopefully that’ll be the same for you too.

Try not to dwell on the feeling of fear, it’s easy to say and more difficult to do. I was terrified at first thinking every twinge and niggle was another stroke. I had counselling sessions which really helped, perhaps you can ask for a referral for yourself.

Give yourself time to heal, be kind and patient with yourself. Best wishes

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Shwmae @GemA, diolch for letting us know how you are going, and I am glad to hear you have an affable and productive relationship with your GP. That disturbing whooshing feeling has been with me for two years, as a proviso to any symptoms I express, I had six TIAs and a bilateral cerebellar stroke, so my old grey matter got blitzed.

It’s called proprioception in general, and related to the vestibular system (balance) and oculomotor system (sight) working in tandem to create a smooth cognitive visual/spatial awareness. It’s an intricate performance, the convergence-accommodation reflex may be affected, that is when the eyes need to track with movement to perform a smooth transition from one point to another. So, if you suddenly move, your eye movement may be delayed causing a conflict of interest in what action you are performing at that time. It’s the brain that is at the controls here. I assume, like me, your eyes and physiology is fine. I did visual-tracking exercises for about a year, I got a bit lazy with them, and I don’t know if they actually helped or not, but that’s the trouble with post stroke. Improvement is hard to measure, and even harder if we are bracketing it with rehabilitation.

That electric shooting shock has been mentioned to me by quite a few cerebellar stroke survivors I know. I had it too, but it has eased off now. Occasionally, it returns just to sting me when I don’t want it to. I never got to the bottom of why it happens.

As your right side was damaged, some language function will be affected. Mine was also damaged but not as much as on the left. For a long while I had issues parsing sentences, muddling up my tense, and having to go back and review. I still muddle up on and in.

That feeling of anxiety and impending doom does subside, especially once you come to grips with the sensations. For me, it was understanding why they are occurring and that they become a harmless, albeit uncomfortable, pattern. I do hope that yours resolve fairly quickly, I know of other cerebellar stroke survivors who seemed to have picked up where they left off about six months after stroke. They do say that recovery from cerebellar stroke has a high efficacy. I lucked out with my brain blitz, but I’m the type of person that if I had to walk miles home in the rain and cold, I’d do it with the thought of a hot soak in a bath when I got back as a means to propel me ever forward.

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I’m a little over three months out from two strokes, a month apart.
The fear has faded, and the electric shocks have gone from regular to rarely. I think of it as my brain shouting at my leg because it has forgotten how to whisper.
I’m glad to read “that feeling of anxiety and impending doom does subside” - mine has lessened considerably.
For a while there I did not get hungry, could not remember to eat, and when I did could not remember what I ate, all things that are improving.

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Having a sense of humour is an absolute must for recovery snd great to hear you can giggle with your daughter when things dont go to plan.
Ive slways beensble to use humour in all situations ive faced (this being the toughest one) but it really does help as do the lovely caring fellow rowers on this forum and journey thst we are all on .

Keep smiling and chuckling

Andy

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@GemA good to hear you had a good appointment with the GP. It makes such a difference if they take the time to explain everything to you.

The annoying symptoms you mention seem pretty common. I have all except the feeling of impending doom. I often get an electric shock type sensation in my head…usually at night time. I have no idea what causes it but I like to tell myself it’s my brain doi g some more repairing…no idea if that’s the case but it does stop me worrying about it as much.
I still get dizzy too but have learnt to adapt how I do things to compensate for it.
Your symptoms should ease in time. Keep smiling at some of the odd things that happen.

Best wishes.

Ann x

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So sorry this happened to you, but it will get better, one step at a time, confidence is built day on day by building back up at a rate your comfortable with, dont try to do too much too soon (especially the first 6 months) and really listen to what your body says, needing rest etc i’m 8 months post stroke and cannot beleive how far i have got now looking back on the journey, the exhaustion and fatique was like nothing else for the first few months and gradually improved, good luck in your journey

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#Gem … hi Gem, sooo sorry about this happening, I know exactly how frightened you feel …last summer I had 10 TIAs and 2 small brain bleeds … sadly our hospital is the very worst for getting to see anyone even if taken in ambulance with blues and twos … and just sat for 6 hours … however, I also still feel frightened I am going to have get another stroke, as you say every little twinge etc is a worry …
But the knowledgeable folk on here are really brilliant and will give you very good advice … just know you are not the only one with these feelings xx … Val …

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Hi Gemma,sorry to hear your news .i had exactly the same stroke almost 3years ago in March 2020.exactly the same length of time in hospital and tests,scans,mri etc…
I was left with left side weakness,sight losscand hearing,balance problems and pain,these have slightly improved over time but likevyou i still eorry if i have headache or different things, i didnt sleep properlyvfor about a year i out off goingvto bed at night as my stroke happened whilst i was in bed in the early hours so i got scared it might happen again,but you will learn to adapt and learn new techniques and eventually you will improve,take each day at a time,go slow,rest when you can and ask for help if you need it,this forum is brilliant for anycquestions or advice.i have had a few major accidents since but mainly due to my balance and tring to go too fast,so i couldcsay i’ve been back at work part time for a year but on and off with injuries,but i’m stronger,braver and thankful to still be here.don’t sweat the small stuff,listen to your body and pace yourself you will need lots of rest,be kind to yourself and dontbe afraid tovtell people.i wear a badge that says please be patint with me if i’m talking,walking or thinkingvsliwly i’ve survived a stroke…and it does help because people think you look ok on the outside but don’t know what’s going on inside…anyway i wish you the best and remember tomorrow is another day and will be better.love and hugs Bernadette. xx

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Hi Bernadette,
Thanks for your reply.
Did they find any reasoning behind your stroke?
I’ve currently got a 72hr ECG fitted to see if my heart has caused the clot.
It’s nice to hear from people like yourself, other than your accidents due to loss of balance have you had anymore strokes or TIAs in the 3 years?

Gem

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No don’t know why just unlucky,i havent had any other attacks so i think i’m luckybreally,i had a couple ofvfurther mri scans butveverything ok x

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Oh i forgot to mention i had a heart monitor fitted for two weeks but it didnt show anything wrong,my blood pressure was very very high so i think thatz what caused it.x

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Back to check in and update:

1 calender month has past and I can now officially drive again :blush:

I informed the insurance company who marked it on my documents but informed me that my premium won’t be increased by this.
I’ve made a few small close trips to the supermarket or to drop one of the kids at a friend’s house for tea.

I haven’t heard anything back from the 72hr ECG holster so can only assume all was well here.
When I was discharged I was informed that there wouldn’t be a need for a follow up scan as they just expect the artery to heal itself however last week I received a call from the discharging doctor to say the consultant has said they will do more scans and today I got my booking letter for a MRI head and neck and MRA neck TOF.
Feel a little discombobulated that one minute it wasn’t necessary but the next it will now be done, but also happy that I get another check up.

The neck, head and shoulder pain comes on now when I overdo things a little through the day, I use it as a guide to tell me when I’ve had enough.

My GP asked if I’d speak to some medical students who were looking for learning on strokes so I had a 45 minute session chewing the fat with 6 really lovely ‘Doctors to be’.

Anxiety? Yep still there but only when the lights go out and I’m left to my own thoughts, so I have a technique of staying up watching telly until I fall asleep without realising it, this is ok for now but not sure how this will fit in with life when I go back to work.

I have a meeting with work to discuss ‘what next’ I’m not being rushed to get back so that’s a huge relief for me, I suppose it must be so hard for people who don’t get paid when off work or when management put pressure on.

I have recently found out via light excercise that I have also lost the ability to dance, if I have to coordinate my leg in rhythm with my arm it’s a no go! Funny to watch though if you like a giggle.

Anyway, just thought I’d pop in and offload a bit.

I hope you are all ok in the best way you can be
Stay Safe
Gem

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@GemA thank you for sharing your progress. I’m really pleased for you as you seem to be progressing well. Returning to driving is a big thing - well done.
It was weeks before I heard anything from my holter monitor so it may be too soon for resukts yet but I imagine if anything too bad had shown up they’d have been in touch.
Good that you’ve found a way of controlling your anxiety for now. As time moves on you may find it eases so won’t need to worry about how it fits with work.
Good they’re doing more tests. It’ll be good to know you’re healing ok.
Keep going you’re doing amazing.

Best wishes

Ann xx

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Well done,driving will give you more freedom,i will be getting behind the eheel as soon as my foot and ankle allows,everytime i try to start driving again i end up doing something daft and not being able to, but i’m determined to do it…i used to stay up at night but eventually got too exhausted so i went to bed and read my book until i was tired then started to go to bed a little bit earlier every week and read then eventually it worked i could go to bed at an normal time read for twenty minutes then sleep well. It will get easier. Good luck.Bernadette.x

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Seems you are making steady progress, trying to avoid getting wet those anxiety gremlins. I’m pleased that you can have a laugh at your symptoms, I often chuckle when I knock into things and cause a harmless mess. Tai chi is useful for getting some coordination back as it is precise and controlled. Fatigue is an indicator that the brain is still injured and healing, we may feel like we’ve ironed out some creases but fatigue reminds us that the damage is still there.

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What a brilliant post - @GemA !
That is sooo positive and for you to go and talk to trainee Doctors is very impressive!!!
Well done you! :+1: