I hope I have posted this in the most appropriate place on the forum, apologies if that is not the case .
A very kind and helpful lady from the stroke Association helpline recommended that I post my question here as somebody else might be able to relate or offer some helpful advice.
I am writing this on behalf of my mum Pam (79) who has had three strokes in the past (brain bleeds). She has experienced typical and common post stroke side effects like for example anxiety, depression and seizures. But there is one condition or symptom that seems quite unique to her.
She has seen neurologists privately and NHS, she has seen audiologists and ear nose throat specialists both private and NHS. The neurologists say it is likely to be an inner ear balance problem. But the audiologists and the ear nose throat specialists say her ears are fine and it is a brain problem probably linked to stroke and cerebral amyloid angiopathy (CAA).
She is on no medication, so no possible medication side effects are responsible.
My mum is wondering whether it is just another post-stroke symptom or condition and is hoping to find somebody else who is experiencing the same symptoms so she doesnāt feel like she is the only one experiencing this.
So what is this symptom or condition she is experiencing?
To try and explain or describe it as simply and as best as I can I would say she feels slightly dizzy and dazed like she is in an airport all the time, she feels a bit spaced out like she is a little bit tipsy after having a drink. More importantly she feels like she wants to pop her ears but canāt.
She doesnāt lose her balance and fall over luckily and she is not experiencing vertigo.
She would feel so much better if she could just pop her ears and if she could Iām sure her post stroke anxiety would be vastly improved.
Do any of you or anybody you know or care for experience the same problem after a stroke?
Thank you so much for reading my message and for anybody that kindly answers and offers some helpful advice.
Pamās bleeds, which caused her stroke, have no doubt affected her brainās vestibular system. The vestibular system functions to detect the position and movement of our head in space. This allows for the coordination of eye movements, posture, and equilibrium. The vestibular apparatus found in the inner ear helps to accomplish this task by sending afferent nerve signals from its individual components. Our vestibular system is a coming together of many different systems which collectively help us balance and function smoothly.
I trust others will point you in the right direction. Itās a complex predicament, but thereās every reason to expect things to settle. Tweaking Pamās diet and lifestyle will helpā¦ Make sure she gets plenty of sleep. Wishing you both the best, ciao
Are you the catās alter ego? Cute face but slim?
I constantly get a spacey feelings. Daily!
Itās not vertigo, not dizzy, notā¦ etc.
Comes on like someone flicked a switch. Sometimes I am aware that it stops the same way other times Iām less aware of when it stops.
It doesnāt mean we both have the same cause or remedies. Iāve never found a remedy
I just live with it now. It seems benign
I canāt get a medical person to engage or even to understand - seems fairly typical that the medics donāt know how to respond to the subtler secondary effects of stroke
As for whether you put this in the right place or not I wouldnāt give that a second thought. The community members - who are the source of the help on here donāt care about pigeonholes
I wonder why youād say post stroke anxiety would be at all affected by popping ears! Anxiety is a very common after effect.
I do quite understand that if you (one feels, mum feels) feel uncomfortable and that feels like the solution then it would bring relief but that would be to the physical feeling. When itās a physical manifestation of a neurological cause then the physical does not relieve the problem and again itās something to live with
I fear I have been of no practical help but maybe Iāve been able to normalise it a little? And maybe that possible normalisation is actually relevant but no guarantees! %~)
Hi @Slimbob and welcome to the forum, so sorry your mum has had so many strokes. Her symptoms are quite familiar here, brain fog is one such description among many. And it must be a hard one for medical staff to quite grasp because there are so many ways to describe it but nothing quite hits the nail on the head.
How long ago did your mum have her last stroke? Iām surprised sheās not any form of medications, but then that could be because of the bleeds.
Do you know if the nutrient levels in her body are high enough? It wouldnāt do any harm to give them a daily boost with a nutrient shake such as Complan. It may increase her energy levels which will further improve her mood, any lift some of that fog. If she has had a blood for this recently Iād suggest you get her gp to do one, as certain vitamins/minerals in the body can also have this affect.
About 8mths after my stroke I was prescribed folic acid for a couple weeks as I was very low, and told to continue with over the counter strength after that. That did a lot to lift and clear my brain fog and spacieness.
Hi @Slimbob and welcome to the community. Sorry to hear of your mumās strokes & her ongoing symptoms.
A few of us experience ongoing dizziness / wooziness / fuzzyness post stroke and this might be similar for your mum.
I had a lot of checks done by ENT and I too was told it was likely neurological rather than ear problems.
Does your mum suffer with tinnitus too ? I do & that makes my ears feel like they sometimes need to pop. If she has tinnitus you can get some white noise hearing aids which help relieve the tinnitus & in turn may help with wanting to pop her ears. I donāt know if it would work itās just a thought yhat came to mind.
Like Simon I am learning to live with my symptoms but that doesnāt mean they donāt drive me mad at times.
Hi Roland,
Thanks so much for your kind words and the incredibly helpful information about the vestibular system, fascinating. I really do hope it settles down in time like you say, fingers crossed. We really do make an effort with her nutrition, hydration and sleep. She sleeps really well thank goodness and hasnāt lost her appetite for good healthy food. I will definitely look more into the vestibular system.
Thanks very much again Roland and I hope you are well.
Bob and Pam
Itās great to know I posted this in the right place.
My mum loves cats so I thought it would be a great profile picture, Slimbob is just a strange username I always use lol!
I am sorry to hear that you constantly get spacy feelings, It sounds quite similar to my mum and she often uses the term āitās like someone flicks a switchā.
Itās such a shame you havenāt found a remedy or something that can help it for you, I know you say that you have learned to live with it but it would be really great if you could find something that helps. We have not found any remedies either our end but if we do I will post back.
Yes like you say itās quite a subtle post stroke symptom that medics canāt explain or advise about, the brain is such a complicated thing isnāt it.
With regards to anxiety and popping her ears, I agree it seems like a strange thing to say that popping her ears would help with her anxiety, I donāt quite understand myself what she means. She just says if she could pop them she would feel so much better and she feels her anxiety would lift, but I honestly donāt know.
We have tried various techniques to pop them that we found from ENTās on YouTube, but nothing helped unfortunately.
Thanks so much for your reply and you have been a great help.
Hi, EmeraldEyes,
Thanks for your reply, and itās great to know that Mumās symptoms arenāt something she is only experiencing. She has experienced brain fog before and says this is similar but not quite the same. Like you say itās quite hard to hit the nail on the head when explaining it.
Her most recent stroke (Bleed) was in September 2022. She has not been prescribed any medication as her blood pressure is really good and we monitor it very frequently. Her GP is also very happy with her blood lipid profile. We have to be mindful of anything medication/supplements that thin her blood. Apart from her history of stroke sheās very fit and healthy for her age, amazing really!
Her GP kindly does a really good annual blood test and checks a variety of things including certain vitamins and minerals, she has always been very happy but thatās a great idea about the nutrient shake, thank you so much for the advice.
Mumās Folate levels are fine thank goodness, she eats a lot of legumes, Leafy greens and broccoli. She also has folic acid in her vit/min supplement. I am so pleased to hear that folic acid really helped you with your brain fog and spacieness feeling. I will definitely mention this when we see her GP again.
Thanks so much for all your advice and help we both really do appreciate it.
Hi Ann,
Thanks for your reply and it was a great help.
It is reassuring for my mum to know she is not alone with her symptoms but at the same time it is also very sad that you and other forum members are experiencing the same problem.
Yes, your descriptions of dizziness, wooziness, fuzzyness fit my mumās experience too.
That is very interesting to hear you have also seen an ENT, had tests and been told it is likely to be neurological rather than ear problems. This is the same with us too.
Fortunately, mum doesnāt suffer with tinnitus, she just has the sensation that she wants to pop her ears like when you are on a plane taking off and landing.
I am very sorry to hear you are having problems with tinnitus Ann but that is great news you have found that white noise hearing aids help and give you some much needed relief.
Like you and Simon, mum is learning to live with it as best she can while still trying things to help and never stop searching, like you it does drive her mad at times.
If we find any helpful solutions we will post back.
I echo Pando, disruption to the vestibular system will bring on such symptoms. Iāve lived for four years, feeling like I am at sea and havenāt found my sea legs. I sometimes show people as an example by putting an apple into a clear jug. While the jug appears motionless and, seemingly, stable, the apple bobs around inside.
In time you will build up knowledge and experience in a variety of things you never would have otherwise come across. Thatās natural. It sounds like youāre in control of nutrition, hydration and sleepā¦ so congrats ; the gut is our ā1stā brain. There are plenty of bio-hacks, tweaks and optimizations that will follow.
Good luck, let us know how Pam is doing, ciao, Roland
Yes I agree the vestibular system does sound like the likely culprit. Your situation sounds worse than my mums! I do hope you find your sea legs soon so to speak and there is an improvement over time.
Your apple jug experiment really brings home what you are experiencing for someone like me who is not experiencing this. As I said it does sound bad (understatement).
Yes, I need to keep growing and keep learning so I can help my mum. Thanks for making me aware of the vestibular system I am ignorant about it and need to learn more. Mum is doing well with regards overall health, blood tests, sleep etc but as you rightly point out there is always some thing else to learn and improve on.
I agree the gut and microbiome is so important, unfortunately mum suffers with IBS but we do our best to control it with nutrition choices and keeping a food/symptom diary. She can handle soluble fibre which is helpful but probiotics can cause problems even home-made ones. We will keep going and keep trying to improve with time.
Thanks so much again for your kind words and helpful advice Roland.
I hope you are doing well and constantly find things that help you with your own journey.
Hi,
Just to clarify I am on here because my wife died due to a stroke.
That aside, I have a suggestion.
I have suffered from migraines for over 50 years and there are similarities in symptoms of some strokes and migraines. For me, that includes each episode starting with a āspaced outā feeling.
Since my wife died I have, due to links I found on here, been taking a magnesium supplement and the migraines and symptoms have reduced by about 90%, both frequency and severity.
It may be worth trying. It certainly canāt do any harm.
Typical supplement dose is one 375mg tablet per day but I take one morning and one evening.
Good luck.
So glad Iām not the only whoās tried Magnesium with success in reducing their migraines. Iām sticking to 2 in the morning as Iāve found 1 isnāt enough and donāt want to rock the boat and the headaches back
I am so sorry to hear your wife passed away and thank you very much for your reply and your suggestion too. Mum has been taking magnesium glycinate (3x100 mg caps) 1 cap with breakfast, lunch and evening meal for a number of years. We are pretty sure it has helped her with her anxiety by relaxing her but unfortunately it has not helped with her spaced out dizzy feelings.
I am so glad itās helped you with your migraines,It must be a huge relief as I hear that migraines are terrible,I have never suffered from them myself so I canāt imagine what it is like. At least you have found a remedy that works.
I see that you take 750 milligrams per day which is a bigger dose than my mum, I will mention it to her GP next time we go to see whether it is worth increasing the dosage. I know you have to be careful if you have kidney problems or kidney disease when supplementing Magnesium, mum is lucky in that regard.
I am so glad to hear that magnesium is really helping you with your migraines. Itās great when you find something simple and effective that really works.
Being a scientist I had to do the experiment.
After taking Mg for 3 months with no symptoms I stopped.
Five days later I had a full blown migraine.
Coincidence, perhaps, but I wasnāt going to take the chance so Iāve been taking ever since - a total of 13 months now.
Thank you for your message, Slimbob.
Be wary of the ELEMENTAL Mg content of supplements.
If a tablet is 100mg of magnesium glycinate it is only 20mg of elemental magnesium. Check what is being used.
As long as there are no kidney problems it is virtually impossible to consume too much magnesium.
I think that most people nowadays with modern diets and farming methods are deficient in magnesium.
Regards
Alan
Hi Quaterp,
Thanks for your message and helpful advice. Mum supplements with 300mg of actual elemental magnesium a day coming in the form of glycinate. Good to hear about the safety with regards kidney issues, that puts my mind at rest. I agree with you about magnesium deficiency being on the rise, it is such a important mineral for health.
Great to hear it has helped you so much.
Best wishes.
Bob.
but slim? 
