A few years ago I had an MRI to find why I was so dizzy, nothing was found other than the fact I had had “Silent Strokes” at some time unbeknown to me, which left lesions on the brain.
Fast forward to 2022/2023 and I have had the worse head type shocks and severe dizziness. Had CT Scans and it has shown I have Subclavian Steal Syndrome and blocked carotid artery, this has been causing me a lot of grief for some months as the Vascular Team are not quite sure and wants me to see a Neurologist. I am in West Wales and the waiting list times are ridiculous I’ve been on the list since January and there’s probably another 10 to 12 months to wait. Decided I’d couldn’t wait this long as symptoms are getting worse so tried Private Hospital local to me and the earliest I can get is November 2nd, originally 26th October, but got rescheduled.
Has anyone had anything like this and how do you cope with the dizziness.
You have my sympathy. I get a lot of dizziness & at this stage don’t really know what’s causing it. I’ve been waiting since last Nov to see someone. I am not sure I cope with it well at all & often just have to sit & wait till the worst passes. I am trying, slowly, to just get on with things but that is easier said than done as i am sure you know.
I do take anti nausea meds to help with the sickness that comes with it.
@Janwhy My first and immediate symptom of stroke was severe vertigo. The whole world was spinning. They treated me at hospital with an anti-vertigo drug. It was actually the stroke causing it…an ischemic stroke. Before the stroke, for a few weeks I was having little dizziness episodes.
The scan afterwards found the stroke. The scan is all-important. Good luck to you. That waiting list is ridiculous. All the best to you.
Thank you for replying, I have not been around much as was taken to A&E on Wednesday when I had an episode of severe dizziness or vertigo, it felt like I had been hit over the head with a baseball bat and knocked sideways luckily I fell onto the arm of the sofa which has loads of soft cushions top lip went numb like at the dentist and felt swollen and my speech was slurred.
Now have had phone call from private hospital and my appointment has been moved from 2nd Nov to Thursday this week, to see Neurologist.
Janwhy
Thanks for your reply and advice, I will write somethings I need to ask and also the answers, I seem to be very absent minded and forget the right words even though I know what I want to say, it’s so frustrating.
I struggle too with being very slow to find the words. Im sure that ive lost half my vocab. Sometimes i say the opposite word or a word that sounds like the word im looking for. My speech therapist has said it is Word Finding Aphasia. Think your spot on!
Yeah I have that too and it’s a complete bugger in some circles but I have found that most people are actually pretty tolerant and will wait the 30 seconds it takes me to struggle through and I very often fill the gap with a wrong or inappropriate word and just have to leave it to other people to recognise that I didn’t find the word I wanted .
It’s one of the things that bugs me the most I can’t express myself fluently in real time
C’est la vie
Stroke is a permanent change to your reality but the new path you’re on still has opportunities for great reward
Like @SimonInEdinburgh, I have aphasia too, which is why we both recognise these symptoms I often use the term ‘words fail me’ these days
I come from a large Irish family, and when we get together I spend more time listening than talking, because it’s hard to get a word in edgeways in a rapid fire conversation where everyone talks over each other to be heard
Thanks for replying, I’ve now seen w Neurologist and both confirm it’s Subclavian Steal and is probably the cause of my dizziness and that the the Vascular Team should look into doing something about it.
No reflexes found, have had a Doppler ultra sound scan, waiting in results, also for an appointment to have an MRI Scan of head and cervical spine.
Got disc problems and a trapped nerve in my neck awaiting report from neurosurgeon. My diabetes type 2 is not under control so I now have to go on insulin on top of everything else. Not feeling the best to be honest.
Jan
Well now, isn’t that good news? Now they know what is going on inside, and it’s treatable, that’s what all these will be about. Then they can concentrate on getting you better and hopefully it should take care of the dizziness. Yes, it may mean some surgical intervention such as putting a stent in, but that’s fairly routine stuff.
Naturally, with all that’s going on, one thing can have a knock on effect on the other. It’s been a very distressing time for you and that will be having an affect your diabetes and that’s to be expected. And uncontrolled diabetes also affects our mood and temperament!
I’m type 2 myself and just take medications for it. But there will come a time when I’ll have to go on insulin. In the meantime though, I’m just burying my head in the sand and not contemplating that far ahead
Look on the positive side, your quality of life is going to be so much better once this is all sorted out. Here’s hoping that they can get started on getting you better soon
Thank you for your reply, I am happy that I now know there is something that can be done, but the vascular surgeon I saw did tell me that it was a risky op for me as I have so many other health problems. I’m still waiting to hear from them as to what if anything they can do. It’s so worrying at the moment. I stay optimistic, buts it’s hard to stay positive when you feel so ill.
We all understand those feelings here on the forum as we’ve all been through similar experiences ourselves, and takes long getting to that point when you can recover. So whenever you feel it’s all getting a bit much and you need to off load, you couldn’t pick a better place than here
Keep as fit and active as you can and eat plenty of brain food…your fish, meats and dairy because that’s what it needs right now to repair:smile: It takes more than your average intake of nutrients when you are in recovery. Plus if they do decide to operate, you want your body to be well stock up on those for the best possible recovery
How are you mobility wise, are you able to get out and about?
@Janwhy good news that they’ve identified an issue that they can hopefully treat. I can understand you feeling a bit low though. It’s still a big thing to go through but I hope they can sort your dizziness for you.
Thank you so much for your encouragement and understanding.
My mobility isn’t very good with the dizziness and I also have Rheumatoid and Osteoarthritis along with Fibromyalgia, Diabetes, Asthma, Atrial Fibrillation, Sarcoidosis and Peripheral Neuropathy in hands and feet and a few other things thrown in too.
I often use the term ‘words fail me’ these days 
