I’ve been to ENT today for a long awaited appointment about my dizziness. I saw the loveliest lady and really felt like she was listening to me and understood the impact it has on me. She has ruled out any issues with my ears and said that given my stroke started with dizziness & nausea that it is likely all stroke related. She said the symptoms I described were Neurological rather than something like vertigo, menieres etc. She said that my double vision and mobility troubles won’t be helping - which I already knew. She spared me some of the balance tests because it’s difficult to balance on 1 leg when your foot won’t lift off the floor
Apparently my hearing is as good as it gets & that’s why I am very sensitive to some noises. She did suggest my hubby visits the audiology clinic when I explained about the fights we have over TV volume
To cut a long story short she says there is nothing they can do to help and she’ll write out to my GP about everything we discussed. Not sure where we go next…if there is anywhere. Learning to live with it is my plan. I was dreading this appointment although not sure why. I’m a bit disappointed but not surprised.
I can’t recall what medications you’ve said you are on in the past or already investigated. But would it be worth speaking with your chemist about them to see if one might be causing the dizziness and any balance issue you might have. I’m only suggesting this as there are a lot of medications out there which do have that side effect, including meds for things like vertigo, so it’s worth investigating if only to rule it out. As we know on here, some people have more adverse side effects than others.
As for your hubby, I whole heartedly concur Both myself and my hubby’s aunt have made our families suffer for years with high volume on the tv, all the while believing it to be the sound and acoustics of whatever we watched that left us struggling to hear what was being said. Particularly because we didn’t notice, and when talking with people just assumed they were mumbling if we didn’t hear. My hearing aids have been a blessing and it’s only because of my stroke that I’ve got them Had to retrain everyone to stop shouting when talking to me when I first started using the hearing aids
I’m only on the usual clopidogrel & Atorvastation & have gone through all that with a few different drs / pharmacists & they all agree it’s not my meds. I was hiven some meds for the dizziness but stopped taking the one lot ages ago as it did nothing & won’t take the other because it helps the nausea but gives me horrific headaches and I think i’d rather have the nausea i’ll go back to my GP once sge has the letter from todays appointment and go through it all again.
As for hubby…he has hearing aids that sit on the kitchen window ledge in their containers.
I’ve lost Count of the number of times ge gas taken them back to be checked as he says they don’t help. I’m currently trying to convince him to go back to the dr to see if they can refer to the hospital audiology rather than Specsavers/Boots. We have a solution for the TV though as I invested in some bluetooth headphones so we can watch the TV in the same room at a volume that suits us both. A bit anti social maybe but not as much as me sitting in a different room
Dizziness and nausea go hand in hand with back issues, of the spine in particular. And I do know this from my own personal experience! And we’ve all had our spines/hips taken out of alignment due to our strokes.
Massage, back strengthening exercises, pilates/yoga type back/hip stretches might help with it. There’s a few I like doing to keep my spine and hips loosened up.
Hi, its a pain isn’t it? I too went to see a specialist, only saw me for 5 mins. Nothing he can do.
Asked how long it could take to regain balance, he hadn’t an answer.
take care.
It’s very frustrating isn’t it. I was told today that I might see little improvements but at this stage 2 1/2 years post stroke there’s not much that can be done.
Keep working at it. I live in a constant giddy world, and if your condition is neurological like mine, i.e. cognitive visual-spatial, then it’s a matter of synching back into touch movement, sight and brain with an ever changing world of light, action and distance. I have a friend who is a fellow cerebellar stroke survivor, ten years on, and he always comments that I’m early days (three years) but he says, it will get better.
Ann are you saying two and a half years= won’t be any improvement or is that what you were told¿?
Because if that’s what you’re saying I respectfully suggest that it’s only a self-fulfilling prophecy and if you believe it it is true and if you refute it that is also true .
If it’s what you were told then I commiserate with you that we as a community still have to deal with expert guides who are more ignorant than us about the complexities of this journey and the opportunities and possibilities that exist.
@Rups like you I work at it every day. It seems weird to hear someone say it’s early days at the 3 year point doesn’t it. I’m hoping things will improve in time as I hope they do for you too. In the meantime I’ll just live with it the best I can.
@SimonInEdinburgh the Dr said at this stage there’s not much to be done. In fairness to her she was an ENT consultant and not a stroke / neuro specialist. She explained loads to me which made sense & made me realise that some of the weird symptoms i’d been having weren’t dadt after all.
I am a very firm advocate that you get back what you put in. I work every day to improve my lot as we all do. I remain ever hopeful for all aspects on my ongoing recovery. In the meantime I live my life the best I can with the deficits I have.
After my deluded idea that I’d be back on my feet by Summer time after stroke (about ten months), I then settled for a five year marker. This doesn’t mean that I feel I will have repaired what needs to be repaired in five years, this just means that I don’t have tight expectations that might cause despondency or unnecessary frustrations. My plan was always to keep working on it for five years and then reassess my progress to get a perspective on where I need to go from there. There are places and spaces, positions and movement where I once felt giddy and disorientated, but now don’t. So, I am certain that it is achievable to feel like that most of the time, in time.
That sounds like a very sensible “plan”. I try not to put deadlines on things as, like you say, that can lead to despondency. When i was in hospital after my stroke I thought i’d be back at work after Christmas…i had my stroke beginning Dec. It didn’t take me long to work out that was a tad unrealistic.
I am sorry to hear you had new that wasn’t as hopeful as you wanted. I did not take the ENT’s meaning to be that there wasn’t much hope, just that she is telling you there is not a cause that an ENT can help with, and that vestibular therapy won’t be recommended for that reason. I am still very dizzy most of the time, but like you, have acclimated to the dizzy, somewhat, in order to do things like walk, read, fix coffee…whatever I have to do.
I don’t like the feeling, but also suspect it contributes to the fatigue. I still do the vestibular exercises I was taught, and as @Rups mentioned, practice being in changing light, actions (both others and your own), and distances, in the hopes that eventually, like a baby learns, your brain will relearn to work with your eyes to see better. (I suppose I am making the assumption that the nerves to your eyes are the problem, but maybe it is nerves elsewhere). Whatever the reason, I hope you are learning to cope with it, but also do not give up, as ruling out the ENT issues might give the doctors a better idea of what else it might be.
Aye, it’s a symptom that can’t really be rested to any blanketed satisfaction because, even with my eyes closed, I still am assuming a posture of some kind which needs vestibular balance of some sort, and as soon as I open my eyes, my brain is awash with stimulation. An interesting reference I have noted with my own experience of symptoms is that if I walk through a doorway, opening the door as I do so, I sometimes get wobbly, a whooshing of potential instability. As the door opens it creates a concealed, moving distance of space at an angle. My relation to space is suddenly changed because the opening door creates a change in distance as it opens and my brain has to adjust very quickly to that motion of reveal and changing field of vision. Therefore, opening a door can make me very giddy.
@DeAnn thank you. I’m definitely not giving up. There is always hope.
I have had many hospital appointments & A&E visits because of my dizziness and so far no joy. I’ve had everything from really understanding consultants through to you’re wasting our time (well they never actually said that but made it obvious ).
I have a few medical conditions that could be contributing to the symptoms & i’ve been told the signals from my brain are scrambled which account for some of it. The way it has been explained is that the stroke has affected the hardware & the FND has affected the software. Both together makes for a complicated picture.
I am awaiting an appointment with Occular Motility for my eyes - not sure what they do but Ophthalmology have referred me there. I’m still waiting a neuro psychology appointment & a follow up with stroke team so avenues still to explore but they’re getting fewer. In the meantime i’m exercising away and generally just trying to live life as best i can.
It sure is a long road. I hope the Occular Motility will be helpful. I wonder is that is for Balance therapy, or maybe prism glasses, or other helpful gadgets (silly me can’t think of the right word for things like walkers, canes, bedside commodes, etc…) Anywho, some kind of assistance tools.
I recognize this one! Most noticable for me in trying to pass through a metal detector at NBA games. Someone has to pull me thru it. Thankfully, security has been very good to me bending the rules a little for me.
Same with doors, and also with trying to unload a grocery cart onto the conveyor belt when I am lucky enough to find a cashier instead of a self checkout! Self checkout is way worse! It is next to impossible to grocery shop, but I chance it because my daughter is always there to help me when I can no longer handle it.
All that to really say, my heart is with you, as the pain (frustration, anxiety of not knowing your place in space for a moment or ten, anger with still not really getting used to it)…and quite a few other ways of feeling about it, all while trying to figure out how to get out of being jumbled up! Maybe you don’t feel that way? I hope you don’t, but unfortunately, I do.
Both myself and my hubby’s aunt have made our families suffer for years with high volume on the tv, all the while believing it to be the sound and acoustics of whatever we watched that left us struggling to hear what was being said. Particularly because we didn’t notice, and when talking with people just assumed they were mumbling if we didn’t hear. My hearing aids have been a blessing and it’s only because of my stroke that I’ve got them 
Had to retrain everyone to stop shouting when talking to me when I first started using the hearing aids 
