Still having head trouble and balance issues

I am still having trouble with my head and balance. I have been doing head IIIexercises which the ear nose and throat specialist has told me to do daily I would like to hear if anyone had the type of stroke that affects the balance I dont have mobility issues which * am very grateful. But this is so disabling and I am about to give up that I will ever be what I call normal. Norma Jean.*

Hi Norma Jean. I still have balance problems six years on despite my regular exercises. I think this is because,firstly, we lose confidence in our weak side and ,secondly, because we no longer have a ‘natural’ way of standing and walking. For example, although I try to walk normally, my unaffected right keg insists on being a brake for my weaker leg. Not sure that makes sense, but when my weak leg takes a forward step my stronger leg steps up to it before moving forward. Fortunately, despite totters, I don’t fall over, despite coming close to it. I don’t like it, but live with it.

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My legsare fine John I cannot make anyone understand how my head feels all the time. I put messages on and so far noone has come back with the same problem. I just cant make anybody understand how it affects everything I do. As I have said apart from arthritus in my knees my mobility is fine ite this horrible feeling in my head. Norma.

Hello @Norma_Jean_K, yes, I do have balance and visual problems but, like you, my mobility is fairly good. I don’t have BPPV (vertigo), that’s a condition caused by the inner ear-crystals or inner ear hairs. Instead, I have a vestibulo-oculomotor reflex (VOR) impairment caused by brain injury to my cerebellum. I have written about it here. So, for me, I don’t feel dizzy (room spinning) but I feel giddy and wobbly.

When I was discharged from hospital, the physiotherapist gave me ‘gaze stabilisation’ exercises to do. While these are okay, they are better suited to BPPV. I added to these exercises ‘pencil push-ups’ and other eye exercises. However, although I do have nystagmus and blurred vision, the biggest issue I have is with moving and looking at the same time. So, added visual tracking exercises to my regime (these can be found on YouTube). After doing these for a a few months, I realised these were still too passive for my condition. So, now I am practicing auditory biofeedback when moving, and so far have had some improvement. I’ve had to break for a little while. I am learning that the brain needs a break from exercises to be able to put into practice what it has learned to do. There is nothing mysterious about auditory biofeedback. What I do is walk around looking up and down, stopping and focussing on an object (near or far), I then try and focus on it. While I am doing this I am talking my way through it out loud. I suspect my issues lie with the up and down head movement, as that is when I feel the most giddy. Side-to-side is not too bad. There are different sorts nystagmus and vestibulo-oculomotor reflex impairments, so for me it has been a matter of trial and error to work out what is worse for me when moving.

Mind you, I have found this all out for myself, and not from direct contact with a medical professional, but I’ll try anything to correct my condition. So far, I have felt an improvement with my condition but can’t be certain if this is from the exercises or from natural repair. I just hope I am on the right track. The initial prognosis by my physiotherapist for exercises I should be doing were slightly off the mark, and I wasted a lot of time doing them. They wouldn’t have done any harm, but they certainly didn’t improve my condition.

Hi Norma Jean, my stroke was in my right occipital lobe so my resulting problems are all visual and head orientated, plus the usual debilitating fatigue -I feel very lucky and grateful not to be more severely affected. I’m 8 months into recovery and am now able to take half hour fairly brisk walks on even ground, but am discombobulated and feel unstable if I have to turn my head and move at the same time. I have a headache, now mostly mild, most of the time. The right side of my face also feels ‘funny’ but looks absolutely normal (it would have been nice to have suddenly become younger and beautiful :grin:). My right cheek was very sensitive if touched for the first 4-5 months but now just has a tight, uncomfortable feeling that comes and goes….worse if I overdo things. My distance vision is very good ! and I am a DVLA pass….but my near vision has a blurry area and looking left and right and back again just makes me feel sea sick and unsteady, making driving a no-no. So after that long winded response, yes, I do have balance issues though less debilitating than yours,……But that has lessened with time and I think challenging the brain in measured doses certainly helps recovery. It’s hard to remain positive, but positive thoughts do seem to spur on change in the brain as well. Good luck and my best wishes . Virginia

Hi Norma, I have replied to you before, with exactly the same head problem, it’s like a pressure builds up in my head, it’s difficult to explain to anyone, but I know how you feel. You say no one has responded about it, but I have a couple of times. There does not seem to be any answer for it and I just have to put up with it as I said before a tight hat or scarf seems to alleviate it a little for me. Best wishes, Jane.

Thanks Rups for replying Your problem sounds like mine and it is so nice to find somebody who understands what I amgoing through. I am doing the head exercised the ear nose and throat specialist has given me but wonder if they will cure it. I just envy everybody who is walking round feeling normal/ I have forgotten what that feels like. Thanks again Norma.

Hi Jane I do remember you thanks for replying I did try the hat but it didnt help me I have only just found how to send messages and hopes I would hear from others with the same thing. I have had this now for at least three years and it really upsets my.and my husbands life. I just carry on with no choice. Norma.

Glad to hear you remembered me. I am sorry the hat didn’t work for you. It does help me somewhat. As you said this is how we have to live, but it really is awful, no help from doctors etc. Why should we have to suffer? Just keep plodding on through each day. I am still struggling with this site as well. Take care, Jane.

I have had a bad time today I have felt very giddy all morning I only hope I can go for my usual short walk this afternoon. I just dont know what brought it on its just an addition to the horror I am experiencing every day. Moaning again I never stop. Norma.

Hello @Norma_Jean_K, what kind of exercises are you doing?

I think they are called Brandt Daroff I turn my head to left andlie down to the right for 30 seconds and thento the right and lie down the opposite way and I do them 5 times each side it takes about 15 minutes. in between each side I have to sit straight for 30 seconds. I have been doi ng them for about 2 months. Hope you are ok. Norma.

Oh okay @Norma_Jean_K, I would go back and see your specialist. Brandt Daroff and also the Epley manoeuvre are two similar exercises to treat BPPV. I would suspect that BPPV wouldn’t last more than two months. I was misdiagnosed with BPPV and given medication, tried the Epley manoeuvre but as it turned out, I didn’t have BPPV, I had six TIAs and the giddy sensation was caused by damage to my brain. After the major stroke, the giddiness remained as part of the brain injury.

The aim of Brandt Daroff exercises is to realign the inner crystals of the ear. That’s what I am led to believe. You may have to incorporate vestibular and visual tracking exercises into your regime. Can I ask you if you feel a change in giddiness if the light changes? For instance from the day to the evening, or walking from a bright lit room to a darker room?

Thanks Rups I also think that my problems are damage to my brain as a result of the stroke. I have difficulty when the sun is very bright and also have problems with the dark. I am going to make an appointment with the ear nose and throat specialist as he said he could send me to have further exercises which may help me. Norma.

Hello @Norma_Jean_K, we will get through this. I have an appointment with my consultant in Feb. I plan to present him with all the details I have uncovered about my condition, and see what options are available. I will pass on any relevant details to you. If our condition is caused by a similar set of issues, then it is important to keep in mind that all the functions associated with it are quite complex. If I am looking out the window and turn my head, my eyes need to adjust for movement, focus, and light changes. Not only that but my head has to follow the path of the movement. My torso needs to balance the head movement. Then when I reach that head position, my eyes will need to adjust to a new set of patterns, colours, and shapes. My mind might also be thinking about what I am seeing. This is a lot for the brain to control smoothly. Most people just do it automatically because their brains are calibrated, but for us, it makes us feel giddy and wobbly, and that can then cause a bit of anxiety or disquiet. So, on top of everything else our brains have to deal with emotions. The most trialling aspect of our condition is that every movement is slightly different, so we are challenged by having to deal with new information. That’s why exercises are important because they train the brain to be able to deal with the circumstances better.

I have also noticed that my condition is more easily handled if I take a benzodiazepine. I have recently found this quite interesting and wondered why. Of course, it is not feasible or safe to take benzodiazepines everyday, but they work by enhancing GABA binding abilities in the brain which slows down brain activity. This makes sense that if the brain is working more slowly then it has less opportunity to be overwhelmed by visual and physical processes. The reason I am telling you this is not to befuddle you with medical stuff but because many foods increase GABA in the brain like fish, potatoes, tomatoes, beans, berries &c. It might be worth looking into. I am adjusting my diet accordingly as an experiment but like any natural process, it never is as concentrated or instantaneous as medication. However, it can only help and will do no harm.

The reason I asked about light changes is because as the day darkens, I feel a moment of disorientation as if my brain is having a struggle adjusting to everything having a different luminosity. If there is too much light around, there is too much visual noise and the brain get overworked. If there is too little light around, the visual noise is dulled and the brain gets overworked because it needs to recognise what it is seeing in a darker environment. So, this is the classic between a rock and a hard place.

I know I have nystagmus too but how severe it is, I don’t know. I need this checked out. A lot of recovery is confidence to overcome the problem, the issue is that it is so disconcerting and uncomfortable that it wears one down, and the default position is to feel nervous and cave in to feelings of despair and worry. These feelings add to the problem, are counterproductive but are natural. It takes so much effort for me to move around and do things, fatigue kicks in fairly quickly. If I could just see with clarity and be steady, I would feel wonderful. It must be possible because the functions aren’t broken, it’s just the brain that needs to get to grips with the controls.

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Thanks so much for all the informatiomn you have given me. I cant help thinking that at last I have foiund somebody who understands what I am goin g through I tell every body how I feel but I kn ow they do not understand I think they think I am fussing over nothin g as I look perfectly ok to them. I wish we could see stroke specialists now but like everything else at the moment we are cast aside to get on with it. I hope you carry on keepingin touch with me its given me so much comfort. Norma.

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Hi Norma
I had my stroke two years ago now an like you have no mobility issues but also have balance issues but only when on rough ground. Not sure what you mean by head trouble - I find some of the letters/replies on the forum quite technical so often don’t understand them. I’ve had no follow-up since my stroke until a few weeks ago when my doctor put me in telephone-touch with a consultant neuro physiotherapist, mainly because I have Post Stroke Pain on my left side. She recommended that I go to Pilates for my core strength. I have not been able to do this but have started working my way through the 12 step videos for exercising after stroke, available on this site. I am hoping that may help.
I think it is easy to feel abandoned and ‘on your own’, but don’t give up.
Mary

Thanks Mary My trouble is mainly in my head I am under an ear nose and throat specialist and having exercises for inner ear trouble but as I have said I cannot explain what my head feels like but it makes my life impossible to live like anormal person. I have not got mobility problems whcih I am ve3ry grateful but I am disabled with this balance and head prob lems. I had double vision until last March and I had tha for three years…Thanks again. Norma.

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Hello Norma - it is been almost 6 months since I survived a brain haemorrhage in the cerebellum area of my brain. I know exactly how you feel with disorientation and balance problems.
I have found that in order to help my brain build new neurology and pathways I do physio that causes a mild version of the symptoms and then stop and let the symptoms settle….then repeat, do the exercise, cause the symptoms and stop to settle again. Building new pathways is analogous to the building of new roads to complete a journey because the old roads are broken. The new roads need carving out of fresh earth. The new pathways need to be established for the “normal” function to be re-established. Unfortunately other parts of the brain don’t like this new building of these pathways and then sends other signals to the body to cause disorientation, vertigo, dizziness….in fact anything to cause us to stop. When those symptoms get bad stop and settle. This will teach the brain new patterns and pathways. This approach works. No medication necessary just basic physio therapy, persistence and patience….and a lot of self-love….it a long journey with no quick fix (I’m sorry) but you will get better I promise.
On the bad days when I’ve felt really down and sorry for myself (which is ok btw) I just focus on the fact that I/we/you are on the journey to recovery… it may be long but it’s still recovery.
Sending you love and support

Simon

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Thank you Simon I have had this problem since my stroke in 2017 and it is only recently that I have found out it is my inner ear cwhich I do head exercises daily it helps with the vertigo but not helping with my balance and funny head feelings when I am out walking I know I have got to live with it at themoment but hope that it will eventually go away I have definitely made some improvement. Thanks again Norma… I