Bad head

In the first 6 months or so after my stroke my head felt heavy all the time, woozy, fuzzy & dizzy (inside my head and not the room spinning). It eased a lot around 6 months post stroke but seems to be back again. For the last 2 weeks or so I have felt dizzy & woozy constantly and got my heavy head back. I did mention it to my GP last week and she seemed to think its as a result of my stroke. Has anyone else had a recurrence of these symptoms? What do you do to help it? I’m wondering if its because i’m trying to do more and need to rein it back in a bit?

Shwmae @Mrs5K, sorry to hear you’ve possibly had some regression. As nothing is consistent with each of our stroke recovery journey, I will say from my own experience, aye, I have had periods where symptoms have become more acute after some time of relief. Lasting for about a week, then subsiding and returning again the following week. Like you, I suspect that as we progress, we stretch a little further without consciously considering the effects of that. The more we push, the more strain it is on the brain. This can cause anxiety, and the anxiety can exacerbate the symptoms, and it can become a vicious cycle. That giddiness inside your head is maybe a result of your vestibular system not functioning as it should, this would cause dizziness and as a result, wooziness. I live with that daily. The fuzzy head may be the result of the fatigue from all that.

At any rate, keep track of your symptoms and notice any patterns. This is useful for when it occurs again.

Wishing you well.

@Rups thank you. I am keeping track of my symptoms & what i’ve been doing to see if I can work out the possible cause. I wonder whether I should try my vestibular exercises again.

You have my full sympathy having to live with it daily. I have to say it’s starting to get me down again especially as I thought I’d cracked it.

Best wishes.

@Mrs5K @Rups i sorry you have to live with this Rups, yes Ann I’ve had strange head pains and woozy sometimes dehydrated feeling too. It’s come and gone a few times last was 4 months ago.

I really could do without it so hope it doesn’t come back.

I hope both of you find ease some way. Sending hugs :hugs:

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Hi Ann, sorry to hear you’ve had a bit of a set back, hopefully you’ll be moving forward again quickly, as you and the others have said it could be a result of you could be stretching your previous limits and your brain needs a little time to adjust to the new parameter.

Wishing you all the best, big hugs :hugs:

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@Loshy thank you. I hope you don’t get them back again too. They’re horrid. I’m pretty sure i’m not dehydrated but might try drinking more just to check.
Best wishes.

Ann xx

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@Mahoney thank you. I’m hoping its just an adjustment too. It’s hampering my ability to do things again as every time I move the dizziness returns. I’m sure it’ll pass.
Best wishes to you too.

Ann xx

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Hope the symptoms stay away for you Lorraine, you’ve got enough on your plate with the pain you have without dizziness and fuzziness too.

Best wishes

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@Mahoney many thanks ! Me too x

Yes Mrs5k I’m in your club and suffer same, heavy head, describe it dull, head full of cottonwool or porridge as I remembered it when coming out of hospital. Go for weeks fine maybe now and again experience tension on back of head but then on even keel. Then unexpected the heavy head returns. I know intense conversations bring it on and too much mental activity. For example, if I’m reading and exceed my limit of 30 minutes. Don’t watch much tv but enjoyed a Master Chef episode recently but made mistake of watching another on catchup. My Pattern similar to Rups. I know the answer for me is going back to keeping diary and pinpointing these episodes and being more strict and limiting myself for no more than three excitements a day. Will let you all know how I fair.

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@Pds sorry to hear you’re afflicted too. I think my current bout is probably related to a supermarket excursion after a hospital appointment. I too have to limit my reading and TV watching. I miss my reading but never really watched much TV.
Look forward to hearing how you get on pinpointing your triggers.

Shwmae @Mrs5K, by virtue of your stroke being in the occipital lobe, I suspect you may have similar experiences to those of us with cognitive visual/spatial issues. Interestingly enough, that show I have been watching demonstrated the brain’s reliance on shadows to determine perspective, shape and colour. Many stroke survivors speak of dim lights or bright lights affecting their ability to navigate. I surmise that this has to do with lack of shadows to help the brain, and make the task of taking in the surroundings easier. For instance, I used to think that it was the visual noise of a supermarket that would overload the brain, I think this certainly is the the case but, more importantly, supermarkets don’t have many shadows. The lights are bright and cover the whole space. This means that as we walk through, our brain struggles to gage perspective and it becomes exhausted with the effort.

Shwmae @Loshy, diolch yn fawr, it’s a daily challenge. If I close my eyes and stand still, I get the wobbles. I am not quite balanced properly. If I carry something, I can physically feel my vestibular system challenged. I have the dreaded lurgy at the moment, not Covid, so yet another obstacle to overcome. It’s rainy, I have declared most of today a bed day.

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Oh noo not a horrid cold! @Rups i think a day in bed is what you need. You do spend a lot of time outdoors.

I get it with lights and noise. I cannot bare either.

I hope you feel better tomorrow.

I’m just about to join a zoom meeting with @Bobbi if you feel up to it? Maybe we can cheer you up a little. If not no worries :wink: take care best regards Lorain :hugs:

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@Mrs5K

Hi Ann

I’m going to atick my neck out a bit here and speculate alot.

After having a recent MRi I questioned a fried of mine, who was an specialist stroke nurse with the NHS about my consultants statement that my “infract was healing nicely”
I wanted to know what he could possibly mean be healing, of course it does not heal, our blood starved grey matter rots away, a process of liquifactive necrosis occurs inside our brain, a rather unique situation where we have rotting matter inside our most sensitive and unoperable organ.
I was led to believe that in time we are eventually left with a void, a literal hole in our brain where the dead tissue used to be, this all happens inside a glail scar, a scab of sorts like an egg shell that forms around the edges of our damaged tissue and allows the necrosis to occur inside, which is then intern dissolved into our bodeis, a series of proteins and reactions where the puss inside the scar cage is eaten by our own metabolism and healing.
When I asked my stroke recovery nurse friend about it she described an almost ever changing and adaptive situation for our brains, as the initial healing happens there is a heavy load on us as the scar is formed and the first parts of necrosis occur, but then as time goes on and things settle, they never really stay static, the glail scar can leak, literally allowing puss out into our cerebal fluid and causing all sort of transient symptoms. My own seizures are caused by my new brain wave patterns having to find routes around my scar and rotting tissue to function, and if my scar leaks there’s a toxic shock to the rest of my brain tissue that has be countered and takes some time to get over The long adaptive part comes about by having a hole in our heads, where nothing exists, and the tissue around that is not guaranteed to stay still or behave, the material inside the glail scar is also not guaranteed to dissipate nor stay still so all sorts of reactions and adaptions occur as we carry on living under these rather extraordinary circumstances. It’s not possible for us to house dead tissue inside our bodies without our bodies dealing with it, and liquifactive necrosis is how it does it.
I often have relapses and regressions, and almost certainly they are born from me over working, leaning forward particularly which I’m almost certain cause my scar to leak, my cerebal fluid to be polluted and my body and brain to experience a toxic shock from it.

I try to take it easy, but there’s some things I have to do…

now, I’m no doctor, and this is not the truth in a medical sense, but is how I understand our “healing” works, it as adaptive and forever will be.

Be happy to be told different.

Alan. X

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@Rups i think you may be on to something there. I’m also doing extra eye exercises at the moment as requested by the opthalmologist ao wonder if that isn’t helping. I see thrm again next week so will mention it to them.

Hope you feel better soon. It is very rainy here today too so I am stopping inside also.

Take care x

They actually treat us like idiots and send us home with some aspirin without hardly ever starting to explain the horror show happening in our heads.

@Pontwander thank you for your input. I remember someone telling me that i was healing too. I also didn’t understand that as i’d also been told that the 2 areas of my brain affected had in effect died.

Your points about the affected parts rotting away would make some sort of sense. I never really thought about how the brain deals with the dead tissue. I guess I just imagined it sat there forever.

I really struggle with leaning forward. This always brings on dizziness. Other times I just feel like I’ve been hit around the back of my head on top of the dizziness. I often get (usyally at night time) what I can only describe as electric shock type sensations go through my head. I’m not sure I’ll ever understand whats going on and just live in hope that one day there will be some respite from it.

Best wishes.

Ann x

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That makes interesting reading. Thank you for sharing.

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ohh I’m sorry, I’m not intending to shock or be macarbe about what we’re experiencing.

I have the head end of my bed elevated, in the belief that it ease some of the blood pressure build up in my brain, when I lay flat it is very uncomfortable, this may be worth trying.

In the early days post stroke, I slept sitting up for months to alleviate som eof my symptoms.

but yes, I’m afraid that for a lot of brains, the result is a hole, like being bitten by a shark, the tissue simply cannot carry on existing when it is dead, so it turns to puss inside our heads and is absorbed back into our little miracles of biology.

It brings some scope to the level of trauma we are surviving and also some scope to why it is so hard some days.

I keep my head up, avoid high blood loads into my head (tricky for a man who grows plants and trees on the ground) and if I do rock the boat, water is my answer.
The solution to pollution is dilution, so if the puss cross the glail scar into my cerebral fluid, I dilute it by drinking lots and wait, and it does pass and I do get better.

My hope, 10 months in, is that eventually inside my brain settle down enough, heals enough, for me to carry on doing what I love, like you, I look forward to the day where I might think, I no longer have too many adjustments to make, but consider what is happening in oursuper computers, what we’ve already survived and it’s no wonder it’s been so hard so far.

We have no choice but to stay at the front of moving time and accept what is given to us each second, if it’s hard we endure, and we both live in hope that one day, it clears to a time where we have to endure less.

Stay strong Ann. X you’re a miracle of life.

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