Introduction and Story

[GemA]

I’m Gemma (Gem) 41 Female, Mum to 3 and full time NHS office worker.
Last night 23rd January 2023 I was discharged from hospital after a 3 night stay.
On Friday 20th January 2023 as I was about to wrap up work for the weekend I had a sudden onset of dizziness which quickly became something a lot more severe than I ever expected.
I will say I was fortunate in that the office where I work had 3 highly qualified nurses there and help was arranged and sought for me immediately.
An emergency CT scan showed normal intracranial appearance, despite not being able to touch my own nose when the asked, not being able to stand up, lopping off the the side in my chair and my right eye flickering and my lips feeling like I was just coming out of having a local anaesthetic at the dentist.
I was taken to the assessment room for further tests and monitoring and I struggled to swallow when eating or drinking, what can only be described as it felt like a golf ball stuck behind my nose.
After further tests of bloods, MRI, CTA it was found that I had suffered a Right Cerebellar Stroke caused by a Right Vertebral Artery Dissection.
My recovery has been fast and amazing, other than the lethargy and odd agitation over little things like too much talking and a strange shooting pain that goes from the back of my head and radiates to my right ear and cheekbone.
So I was discharged and finally spent a good night sleeping on my couch at home.
Why my couch and not the bed? I feel safe in the living room, in my bedroom I feel out of sight forgotten and this is the biggest issue I have post stroke.
The absolute fear that it’s going to happen again.
That’s why and how I found myself here because I know that there are others like me on here, who know exactly what I mean.
I know this is very very very early days for me and so I’m hoping someone with a similar experience and feelings can tell me that it does get better.
I don’t want anxiety meds on top of my blood thinners and statin, I just want reassurance that over time the fear does fade a little bit.

Every funny feeling I get makes me think I’m about to have a stroke, prior to this I always had a little twinge or a mini dizzy moment but I did not immediately think impending doom!
Will I ever be able to ignore these little things and move on?

Looking forward to reading through your posts, getting to know you, and hoping that one day I can answer a question for someone else feeling just like me today. Something slightly good has to come from this experience and I’d like it to be just that.

Gem

[GemA]

Nice to meet you Lorraine, I was married young and had my children young too so they are 20, 13 and 12.
I’m still very happily married and very fortunate in the family and friends department so I have a lot of pros on my side and I am grateful and aware of this every waking hour.
I’m so glad to hear other stories, I knew I wasn’t alone it’s just nice to confirm it isn’t it?
Gem

[GemA]

Hi Jane,
Nice to meet you, thank you so much for replying and confirming that things will ease, I don’t expect to every not have this little fear it is just so intense at the minute.
I’ve had a nice warm bath this morning, enjoyed every minute and like every single bath I’ve ever had in my life I got out and had that woosh feeling that we all get going from hot to cold.
Normally you’d just perch on the edge of the bath and think wooo wow what a head rush, now I’m sat there sobbing and going please don’t have a stroke, please don’t have a stroke, telling your own brain not to do something…
Sounds strange out loud but I feel comfortable that you all know what I mean and I’m glad to have found you all xx

[Rups]

Shwmae @GemA, sorry to hear you’ve joined us, but you’ll discover that this forum is brimming with wonderful people all derailed by the unexpected trauma of stroke. Like you, I had a cerebellar stroke, mine was bilateral, so I had both left and, like you, right side damage. I was forty-four at the time, and am now forty-six. The cerebellum plays a major role in flight or fight, so it will easily flinch at feelings that remind it of that awful shock and defacement. Every individual will cope with post stroke rebuilding independently as our brains are all wired differently, for me, I still jockey with anxiety associated with my symptoms. The irksome thing about cerebellar stroke is that many of the post stroke symptoms mimic the pre-stroke symptoms, and that leaves me, personally, on edge at times. For instance, I had a good week recently, then as I was walking up the stairs a few days ago, my body veered to the right. It cast a shadow on the rest of my evening. Then the following day, I did a tip run, and was very wobbly, having to use the yellow barrier poles to keep me steady as I walked up and down the site. My consultant informed me, shortly after hospital discharge, that it was common for cerebellar stroke survivors to experience regression. It is also common for symptoms to get worse after a period of activity as the brain gets exhausted and needs to recharge. I have also recently discovered that if my mind wanders while I am in motion, and then I startle back to reality, I can experience a wobble. There is a name for this, but I have forgotten, it relates to particular neurotransmitters becoming fatigued and then continuing the motion when readjusting its focus. I digress though …

I don’t know if the jumping at cerebellar stroke shadows ever goes away, as I still do, but I personally know of some cerebellar stroke survivors who no longer feel threatened over a reoccurring stroke. So, I guess it really does come down to the individual and the circumstances of the stroke. I practice a lot of mindfulness and personal forms of meditation to get me through each day.

It is beneficial at this stage of your recovery journey to allow the brain to repair, it may feel desirable to just crack on with things when you feel good, but this can prolong the recovery process, as brain plasticity is self-directing at this point, and will do so for another six months before it pilots its repair job. That was one thing I wish I had known after stroke, as I was guilty of the boom-bust cycle, and took advantage of days when I felt capable, thinking I was on the mend, when, in actuality, it was just my brain tweaking but not rerouting. I suspect it has prolonged my rehabilitation, or at least set me back. If you push your brain too hard at this stage, it will fail to make the connection, so gentle rehabilitation and lots of sleep is key to a smoother recovery process.

[Mrs5K]

@GemA welcome to the forum although sorry you’ve had the need to join us.

I, like you, had a dissected artery stroke although mine was the carotid artery. Started feeling dizzy then got worse from there as you say.

Good to hear that your revovery is going well & I’m sure it will continue that way.

The fear that it will happen again is normal but it does ease in time. You’ll start to realise that you’re doing things & nothing bad has happened & that in turn will reduce your anxieties.
I think post stroke we are all extra sensitive to every sensation / twinge & trying not to over think them is a real challenge.
Make sure you balance activity with rest to avoid going backwards in your recovery.
Wishing you all the best.

Ann xx

[Rups]

I’ve had that experience, getting out of the bath, dreading that hot headed, flush feeling because it feels like losing control. I don’t know if this will help, my stroke was initially cryptogenic, which means a cause wasn’t at first apparent. I lived every day for nine months, thinking that another stroke may strike at any time, however, here are a few bullet pointed methods I used to counteract that sensation.

• If I am going to have another stroke, at least I am prepared for what it is like. I am more in control of tackling that adversity should I face it again.

• I would go straight to bed if I felt any sensation that reminded me of the stroke sensations, so I told myself that if I was going to have a stroke, there’s no difference from having it in bed or out doing stuff. This made me braver in bypassing those sensations.

• Notice patterns in symptoms and remind yourself that if one reoccurs, that you have experienced it in the past and nothing untoward happened.

• Keep a stroke recovery diary, so you can see improvement at a glance, and refer back to patterns in your recovery, good or bad.

• If you experience an odd cognitive feeling or bodily sensation, observe it, go with its flow, and let it pass. This is a mindfulness technique. It helps one to be braver and also ground in the present.

• This one is reflective of my personality, so not applicable everyone. After a shower (I had to shower for a year as I couldn’t cope with baths), and my symptoms were disconcerting, I would tell myself that if I had to go to hospital now, at least I would be nice and clean. Humour is a good distraction for the brain and can dilute fear.

• If you feel an odd sensation that is disturbing, think about what you have been doing in and around that time. Having a potential reason for something is beneficial as it removes the unknown, and gives it a name.

Everything is easier said than done, as we can’t help but worry sometimes, and those niggly thoughts do have a way of unsettling the mind. There were patches when I exhausted myself just trying to manage my anxiety, let alone dealing with neurological-fatigue.

[TRFCANDY53]

A loving family and great friends make such a positive difference in this journey we are all on xx

The forum is sooooo positive and powerful again just what we all need right now

[Rups]

Shwmae @Loshy, aye that’s true, although I am at more risk of a haemorrhage, at least I know that I am probably at the same risk as everyone else, and although not foolproof, it’s good to know that the anti-platelet medication reduces the risk of another clot, significantly.

[GemA]

You are all so lovely and just as I expected a great network of non judgemental people who understand.
I’ve had a few visitors at home today and it gets quite overwhelming, as much as I want people around I don’t want noise either.
Ready for my bed lol.
Thanks guys x

[Sharon_B]

Hi @GemA it sounds like you are recovering well, as others have said make sure you rest to let your body heal, visitors can be exhausting I’m 17 months post stroke and I’m still wiped out after visits. The fear does fade, I had to keep telling myself I was on the right medication if anything did happen.
Take care

[Bert]

Hi Gemma, Sorry to hear about your stroke, but you’re in the right place here.
I can see that in the few hours you’ve been on the site you’ve had fantastic welcomes and so this is mine
Take care, come back here regularly and just think of the positives of having kids early - I was married at 21, 44yrs married, two daughters now 42 and 40 with 5 grandkids. I’m coming to the positive now - when I go out with the grandkids people say to them, “Where’s your Dad taking you today?” and they say it’s not our dad, it’s our Grandad - it makes me feel a bit (not a lot, but a bit) younger

[GemA]

Hi All,
Just checking in and touching base with you all.
I’ve been around the forum and read all the wonderful related posts which have really settled some of my worries.
I saw my GP today and just asked her to speak to me in plain English as when clinicians realise you work for the NHS they automatically assume you might know what they are talking about.
However as a office worker in business management I have to keep explaining that I’m not as clued up as they might think.
Anyway, my GP was lovely, drew me some little pictures and explained things more clearly.
I told her about my anxiety and explained I know it’s healthy anxiousness and so we both agreed medication for this is not the right thing. She signed me off work for 6 weeks initially.
A stroke nurse from the community called and she is coming to see me next week, plus I’ve got a 72h ECG appointment for next week too.
I’ve had a few more experiences since I first introduced myself a few days ago.
The worst post stroke symptoms I have got have to be:

1. The awful woosh of dizzyness and loss of balance when I suddenly move or change my direction.
   I was going downstairs today and realised I’d forgot my coffee cup, as I have done many many times before I quickly turned on my heals and went to head back up, at that exact second I had the same feeling I once had when we went to a theme park and rode the vertical ride that holds you at the top a few seconds and then drops you.
2. The headache, without warning and without provoking that just creeps up the back of your head and all over the front of your face like a stabbing shooting electric shock.
3. The anxiety and feeling of impending doom.

The words jumbling we actually find quite funny (we is me and my kids) my daughter came home from school today and I said “Bye Bye” instead of “Hello”.

Anyway everyday is a learning day I guess and just coming back here to update this is a nice little way to offload to people that care and want to hear it you know?

Gem x

[Rups]

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.

[normzone]

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.

[TRFCANDY53]

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

[Mrs5K]

@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

[chops]

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

[Ismeval]

#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 …

[BernadetteC]

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

[GemA]

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