Is this just a setback or the new norm

I had a Intracranial Hemorrhage in June at age 76. Three weeks in hospital followed by four weeks residential rehab.

When I came home I could walk short distances and only used a cane for confidence when out and about.

We went on a mini cruise for 5 days in November. Since then I have had difficulty walking, legs feel really heavy and have virtigo for a lot of the time. (Room not spinning but feel dizzy/light headed) and brain fog.

Had telephone consult with stroke doctor at hospital. He rrquested an urgent mri to check for another stroke. Unfortunately I have a peacemaker and my local hospital only do pacemaker mri’s one morning per week. My appointment is nor until end of March.

I feel like my recovery is going backwards. I expected set vacks but not after 6 months of good progress.

Can anyone relate to this. I tralky don’t like where I am at right now. Cant plan anything and feel I am letting everyone down all the time.

Any advice would be greatly appreciated.

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Hello Tony - I am pleased to welcome you to this community and I hope you will get some comfort and reassurance from others who can relate to your specific situation.

I am myself a carer and so only speak from an advocates perspective and based on things I have learnt through observation and from providing care and support to a stroke survivor who has been severely impacted by the stroke.

What I am about say is based on our personal experiences and views and if it in any way comes across as insensitive then I apologise in advance. We have learnt a lot from over six years being a stroke survivor who had the stroke in their late 80s and who today is in their mid-90s.

There have been many ups and even more downs (set backs) but what has got us to where we are is we accepted everything that happened and then considered how to move forward. One step forward and two steps back became two steps forward and one step back.

All progress was welcome and celebrated.

All set backs were acknowledged and then filed (in case needed in future) as lessons learned.

We accepted that just as the stroke happened when it was not expected (super fit, healthy active and not in group of people at risk), it may happen again (yes, there are no guarantees it will not happen again). If it happens so be it - we are doing all we can to reduce the risk, but if it happens we are not going to beat ourselves up - in life S*** happens :slight_smile:

When we had long spells of “good health” we made the most of it and enjoyed life as best as we could.

When blips happened we took that as a sign to have a break - let the mind, body and brain rest and recharge. Do what is necessary to get back on track and then carry on.

Our recovery has been on the up all the time. Yes, there have been pullbacks or corrections but that is normal. It is very rare for anyone to enjoy continuous success.

So how does this compare with where you’re at?

Well for a start you seem to have had a very good six months of recovery and you have made good progress and have managed to have a mini cruise. Not that we can compare, but we are still trying to stand up and walk and this after six years of trying.
Have we given up? No.
Do we worry? No.

Do we get the support from the healthcare professionals? No.

Being a nonagenarian who is seen as a statistic, next to no medical help is offered and only when we force ourselves on them i.e. end up in A&E when they have to act do we get some sort of token help.

Do we let that bring us down? No.

So after six years of slow and steady progress, we continue and we keep going. Whatever life throws at us we accept and we get on with doing what we must which is our best to help ourselves.

Each day we embrace with

“Today is the first day of the rest of our lives, what are we going to do with it?”

In closing Tony, I hope that once you have time to reflect, you will perhaps not feel that your recovery is going backwards. And in fact, you will recognise you have made remarkable progress and you are in a very good place right now.

In such times as you find yourself now, we see this as our body and brain telling us to take a break. Six months of hard work as got us where we are now, let us stop, reflect on what we have achieved, celebrate and then plan the next steps.

I hope this might be of some use to you. My “pep talk” might not go down too well with everyone, but if it offers you anything, I hope you will take it in the spirit in which it is meant.

Finally, never think like this. You are letting no one down.

Wishing you all the best.

Namaste|
:pray:

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'@Tony.G unfortunately you can have setback after a stroke at any time. I am stroke survivor and have had many setbacks. Sorry I cannot offer any further support, but I am sure the forum will. Good luck :revolving_hearts: none of us like where we have landed post stroke but its what you make of it. :four_leaf_clover: :four_leaf_clover: :four_leaf_clover:

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Thanks for replying Irene

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Thankyou for your reply

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Thanks for your reply .

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Have you had any physio since your stroke? It may be worth arranging, or arranging some more, as that may help you?

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Thankyou for your input. Something to consider.

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Hi @Tony.G and welcome to the community. Sorry to hear of your stroke.

The dizziness & heavy leg feeling you describe sounds very similar to what happened to me about 6 months after my stroke. I didn’t relate it but after you mention your mini cruise I wonder if mine was bought on by my holiday 6 months after my stroke.

The good news is that mine wasn’t caused by a new stroke so hopefully yours isn’t either.

You may find that the cruise bought on some post stroke fatigue which can bring on symptoms like you describe. You need to rest up in between doing things - even things you think aren’t tiring (like watching TV) can take a lot out of a stroke brain. Having been on a cruise in the past I know how tiring they can be.

My dizziness is like yours (my head spinning rather than room spinning) it has improved over time (I am 4 years on) but still gets me when I have overdone it.

If they rule out another stroke then try asking for an ENT referral.

I hope your symptoms ease soon. I know how miserable they are.

Best wishes

Ann

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Hi @Tony.G

Welcome to the community, I’m sorry to hear about your stroke and the set back you are dealing with at the moment.

It’s great to hear that you’re booked in for another MRI just to check it out. I hope some of the answers you’ve already had, have put your mind at rest a little. We do tend to hear from members on here about feeling like they’re going backwards.

I just wanted to pick up on the last thing you mentioned, about letting people down. You aren’t letting anyone down, unfortunately stroke recovery can seem like 1 step forwards and 2 steps back. It seems like you’ve been very proactive in trying to figure why you’ve had this little set back so please don’t think you’re letting anyone down.

I hope you’ll find this community helpful for your recovery and please keep us posted on your progress should you wish to. If you need anything whilst you’re using the Online Community, please don’t hesitate to tag me using the @ symbol and my username.

Anna

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Hi Tony, sorry to hear your thinking the way you are about the stroke.

I’ve managed to get back to work on a phased return program. But I can honestly say this week so far I’ve managed Mon Tues and weds 5 hours each day. That’s the best I’ve managed since returning. I’ve been doing Mon Wed and Fri since going back. But only the hours I could do. So most weeks managed 12 hours.

But I also know yes I feel good this week. But tired once I get home. But next week it could be a bad week for me. I’ve found no two days are the same. No weeks are the same. And yes when I’m not doing great I think to myself. Am I going backwards with my recovery. It can’t be helped it’s how we think things. Hopefully that’s what the matter is with you. This recovery route is not straightforward

Best wishes friend

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Hi Gnasher. Thankyou for your input. Hope work goes ok.

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Hi Anna. Thankyou for your reply. Very much appreciated.

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Hi Ann. Thankyou for your reply. Very much appreciated.

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Hi @Tony.G and welcome to the forum.

Before you come to any conclusions can you please see your gp and get your blood tested for its nutrient levels, if you haven’t had one since these symptoms appeared. Most B vitamins are water soluble so cannot be stored long in the body. Brain recovery, as with any recovery, burns a lot nutrients, particularly the B’s, more than the norm.

Heavy legs and vertigo can be symtoms occur of being low in a certain vitamin. I myself was diagnosed with low folic acid some 6-8 months after my stroke. I too had heavy legs and dizziness and vertigo. But once I was put on a high dose of folic acid for a couple of weeks, the heaviness and dizzyness went, the fog lifted and the vertigo was much reduced. I was advised to continue with a daily dose of an over the counter strength after that and so I’ve continude.

Do not assume that a multi vitamin supplement would suffice as it won’t be enough, get tested first. And don’t ever assume any symptom that is new to you, is just another stroke symptom. It is new and it’s serious enough to get it checked out first and foremost.

Lorraine

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Thanks for the advice Lorraine. Much appreciated.

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Yes, sorry about my writing though, hope you got the gist of it. One of my post stroke issues is aphasia, speech and language, reading/writing. Reading back over what I wrote I can still see where I’ve dropped words, and I’m 5yrs post stroke, so annoying :confounded_face::sweat_smile:

Lorraine

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Do GPs usually do tests for general nutrient levels apart from B12 and folate ? I think those are the only ones my Practice does, but maybe they decide which ones could be most useful for each person on an individual basis?

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Your writing is fine here, Lorraine!

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Yes they can do. I know mine decided on a full vitamin and mineral blood test at the time due to the symptoms I was presenting at the time: headaches, loss of hearing, fatigue, heavy legs etc. They also had an MRI done and referred me to ENT too :roll_eyes:

They will certainly check all those relevant to your symptoms, and if that means all of them, so be it.

Lorraine