Wow What A Difference

[Sparklingsunshine]

Not strictly thyroid related but I hope will be of interest to members. I've mentioned I suffer with dizziness and balance issues which came on overnight ( literally) in 2022 following a migraine. Having seen two consultant, one a neuro, one ENT they concluded I have vestibular migraines or VM.

8 failed medications later and no improvement and with a NHS migraine appointment a mere 6 months away 😒 I decided to go private. Even the highly regarded/ qualified specialist I wanted to see was booked up and yesterday was the earliest date I could see him.

I've mentioned several times my scepticism regarding the VM diagnosis, which was given by two harried, overworked NHS consultants who did very little by way of testing and I just felt they arrived at VM as a convenient scapegoat really.

Well the consultant I saw yesterday had some very different views, after taking a full history, symptoms, failed medications, things I've tried ( too numerous to mention) co morbidities etc, he proceeeded to do lots of physical examinations, balance tests, checked my ears, checked my hand eye co ordination.

He's booked me in for an inner ear MRI as he has concerns it could be an ear issue, due to the sudden balance loss. I've got state of the art ear function tests and balance tests booked in for January. I felt so relieved yesteday. Yes its time consuming as its a 70 mile round trip and comes with a hefty price tag, but I just felt listened to and taken seriously. All the tests are due in the next fortnight.

This condition has dominated my life for nearly 3 years and has ruined my health, both mentally and physically. Even if after all the tests it comes back as VM then there are new injectable treatments which are very successful, VM doesnt respond to many anti migraine treatments. But I just want to feel that everything else has been excluded. And I havent been fobbed off.

Just really impressed with the care and professionalism I've received so far. But I feel very sad that this level of care is often denied to those without the means to pay. It really shouldnt be that way.

[Star13]

I agree and I hope that the tests reveal something for you. Given I’m in a similar situation, I’ve been told that they are to give me Botox injections, is that what you meant by injectable treatments and if not I’d love to know what they are. Happy Christmas.🎄

[Sparklingsunshine in reply to Star13]

For me its the new CGRP drugs, VM ( if it is that) doesnt respond often to traditional migraine treatments. Botox does help some or at least offers partial respite, but the new CGRP injectables can be very helpful. But they are expensive and can only be prescribed by a consultant. And only after failed attempts at the usual drugs.

[JumpJiving]

Hope you get to the bottom of it and get suitable treatment.

Did the later doctor talk about Benign Paroxysmal Positional Vertigo (BPPV) and get you to try Brandt-Daroff exercises? Doing those (after advice from professional doctor) sorted similar problems for a family member pretty much instantly (although had to be repeated again at a later date).

[Sparklingsunshine in reply to JumpJiving]

BPPV has been ruled out. I wish it was that simple.

[Regenallotment Ambassador in reply to Sparklingsunshine]

Oh that’s a shame, I was about to jump to this suggestion too. Similar symptoms for me. Hope the scans show up a concrete diagnosis 👍

[Rapunzel]

But I feel very sad that this level of care is often denied to those without the means to pay. It really shouldnt be that way.

I know. But then we're back to expecting the NHS to be a never-empty money pit, no? I wouldn't want Wes Streeting's job, would you? I'd like to bet that in all the consultative malarkey he's doing, doctors are asking for more pay, and managers are saying there are not enough managers. Some nurses are regular visitors to food banks, and little old ladies lie in corridors on trolleys in agony for days.

No, it shouldn't be that way. Something which incensed me, years ago now, was a protest passing the British Museum. One young person had a placard which read 'Smash capitalism and replace it with something better'. Really? Quantify better. This is a sometimes cold and horrible world, not a freaking fairy story.

We mustn't end up with paid-for healthcare the only thing that's available. Luigi Mangione amplified where that might end. But I believe that the day may be coming when we, the public must accept that we, too, are stakeholders in our own well-being and continuing good health. Observe the 167,149 posts we have made, seeking out the always seemingly out-of-reach expectation of decent health. The money we've taken from our own pockets, to grasp for our wellness. Far too many abrogate their part in the social contract. There are waaay too many people who drink too much/ smoke / engage in reckless behaviour almost guaranteed to render them ill. Just for clarity, thyroidies, I'm not talking about us. Until endocrinology is much more advanced than it presently is, we thyroidies have no idea what has caused our various conditions and remain blameless and often clueless (certainly me - I exclude our many flourishing treasured egg heads). Yes, I know we should lose weight and move about more - you try, doctor, on this poison you're giving us as a miracle cure.

Off on one. Sorry, Sparkling. You never cease to amaze me, hun. Boy have you got a plate full of sh!t. And a sack full of fortitude. Merry Christmas 🎄

[RockyPath]

I saw a remarkably frank and rational specialist in traumatic brain injuries. He apologized that most pharmaceutical knowledge is based on young healthy male subjects and consequently most medical knowledge is seriously flawed.

When you add a layer of responsibility for nurturing a terrible electronic medical record system, the trained medical specialist frequently swings into the zone of a frazzled, ignorant fool who flings out random opinions just to clear the examining room and get a little space before the next one.

It appears as though we must share information here and glean whatever wisdom appears to apply to our situation, and use this to augment the opinions and treatments provided by our harried care providers.

I'm glad everyone's been posting what's been learned and experienced and found to work. Life would be terrible without this.

Looking forward to news from your upcoming tests, and hoping you find relief soon.

[Bertiepuss]

I'm really glad you've finally found someone who listens properly and is running the right tests. I totally empathise, I've been dealing with what I can only describe as an 'intoxicated' feeling for the last 8 years after falling down my stairs. I initially was told it was part of Fibromyalgia so I put up with it as I was given no course of action.

Then it began to progress with other (very weird) symptoms so I went private to ENT and had a battery of expensive tests and a CT scan of the temporal bones. It was discovered I had very thin superior semi-circular canals but it was not definitive if there were any holes in them or not. I couldn't afford to continue down the the private route any further so I took another path of dealing with my newly discovered anaemia and also started HRT thinking maybe these things were contributing to my symptoms - No resolution of the drunk feeling came about from months of treatment so I decided to follow the ear route again.

I went back to the GP and asked for an ENT referral and waited 8 months on the NHS. I saw a lovely ENT who took me seriously, took an interest and treated me like an adult. I felt listened to but he agreed the appointment times were too short, it frustrated him as much as it did me and I could see he wanted to be able to spend more time with me answering my questions but couldn't. I felt bad for him, he was doing his best with what little time he had. He ordered an MRI/MRA and would also look at the private CT scan too.

In the meantime, while I waited for the MRI, I was given an appointment with the audio vestibular specialist and that came through before the review of my scans by the ENT. This man diagnosed me with PPPD - he had no idea why I was at that appointment, took a brief history, HAD NOT looked at my scans and threw the PPPD diagnosis at me and said nothing you can do. He actually disappeared half way through my appointment and had to be fetched back by a nurse after going missing for 30 minutes! It was the most hopeless, useless appointment I have probably ever been to. Totally different experience to the ENT consultant.

2 weeks later I saw the ENT guy again and he said he'd actually found a hole in one of the canals and he also found another hole in a different part of the inner ear (missed by the original radiologist) which likely explains the majority of my symptoms. No easy fix for me and now I await another 9 month wait on the NHS to see another ear surgeon with more experience of these bone holes.

So, the PPPD diagnosis is probably not correct, given in haste without the full information and now is on my record. Just the same as you found - VM diagnosis without the full picture being looked at - it's infuriating! You are now forced to follow an expensive private route, it's not fair and shouldn't be this way. The NHS cannot cope and it forces us to pay for private help which most cannot afford.

I do wish you the absolute best of luck with your tests and hopefully they can find out what is going on a resolution to the problem 🙏 Thank you for sharing your progress, please do update us after you get your test results 😊

Would you mind sharing your consultants name by private message please? It's always good to have the names of those who have positive experiences.

Merry Christmas 😊

[Sparklingsunshine in reply to Bertiepuss]

They are looking at SSCD in my case as I have hyperacusis ( extreme sensitivity to sound) in right ear and autophany ( able to hear voice in head). I was also told PPPD, its a functional disorder ( ie all in your head). How doctors love that one.

Functional being another word for psychosomatic/ hysteria. They just come up with any old bs dont they? He's also looking at vestibulopathy as well. I had a long letter from him yesterday. He hasnt completely discounted VM because I do have migraine but wants to rule out a physical/ structural issue.

I have Fibro too as well as Ehlers Danlos and I warned the locum ENT guy I saw not to just blame the balance issues on that. I'm sick of it being used as an excuse.

I do feel annoyed that I'm going to be several hundreds down after all this but I feel its the only way I'm going to make any progress. I'll send you his details.

[Bertiepuss in reply to Sparklingsunshine]

Sorry to hear that SSCD may be a possibility but good that this is being investigated considering it's (supposedly) rare. I too have hyperacusis and autophony. It is of course entirely possible to have a structural issue as well as a neurological issue all producing symptoms at the same time, just difficult to know what is causing what. At least you are now with the doctor that seems to know what they are talking about. Will you be having a CT scan too to look at the temporal bones?

'Well you do have Fibro so....'.I'm sure that's a familiar one! There are good doctors out there, even on the NHS, that don't automatically do that but when they are so overstretched it's the easy route to take. I can honestly say my most recent NHS otologist, despite him being forced to limit his time with me, actually made me feel like a human, clearly cared for my well-being and did not dismiss me with anxiety. I wish my experience with his counterpart audio-vestibular guy would have been as good. But to get to this point the process has been very slow and will continue to be slow.

[Sparklingsunshine in reply to Bertiepuss]

I've always said having Fibro is like Pandora's box, all the ills in the world ( or in you) are blamed on it. I'm almost more amazed when something I have isnt associated with Fibro.

Mind you I have Ehlers Danlos and I'm not sure two syndromes with extremely similar, virtually identical symptoms can co exist in the same person, but there you are. What do I know?

[Sparklingsunshine in reply to Bertiepuss]

I've found the only drug that helps is Clonazepam, I saw an out of hours GP last week who commented, I might as well have admitted I was taking heroin, such was the distaste on his face. I only take a low dose every other day and have never exceeded that. Its a marvel and allows me to function.

My NHS Neuro prescribed it as its a very effective vestibular suppressant. What can we do? Take a benzodiazepine that is addictive but allows us a life or remain constantly unbalanced and dizzy? Answers on a postcard please lol.

Happy Xmas to you as well. Here's hoping 2025 is better for us all.

[Bertiepuss in reply to Sparklingsunshine]

Yes, I took Clonazepam for a while, it certainly got me over a very bad downturn in symptoms and got me back to some form of functioning. Unfortunately the side effects were causing me problems (flared up an eye condition) so I weaned off it after a few months and luckily I didn't slip back to the non-functioning state I was in. If it helps and not hinders then it's worth taking despite the dependency issues. I know someone who was on it for a period of years and successfully weaned off. If you'd been prescribed it for epilepsy, I bet that out of hours GP wouldn't have been concerned.

[Sparklingsunshine in reply to Bertiepuss]

I think benzos get an unfair rap tbh, yes they can be addictive and yes they cant be bought illegally and misused, usually by poor sods who were prescribed them and then had their prescription abruptly ended, but then again name me a drug that doesnt have the potential to be abused?

Doctors prescribe opiates, antidepressants and anti convulsants quite happily, The amount of stuff I took when first diagnosed with Fibro was eye watering. I was on morphine, amytriptyline, tried Pregablin.

All horrible, all addictive, all with unpleasant side effects. I came off them all and now just take low dose naltrexone for fibro, which I get privately. I dont remember any doctor being sniffy about those.

Luckily I've not had any side effects from Clonazepam apart from a bit of drowsiness. I try not to take it unless I'm desperate.

[buddy99]

Isn't it amazing and sad at the same time how over the moon we can be when we are acknowledged and listened to, when we feel somebody really cares and is willing to get to the bottom of things? Noncompliance is one of physicians' biggest complaints when they talk about patients. When we feel that we are cared for it is much more likely that we will go to the borders of what is possible financially and otherwise. We want to be healthy or at least do our best to get as close to it as we can. When we are regularly dismissed and mis- or untreated, we can fall into despair and hopelessness with dire consequences. And since it is more common to not be treated well within an ailing medical system, every action that shows even a minimum of empathy and care, throws us into a fit of extasy. It refreshes our enthusiasm and our hope.

May we all receive wonderful care in 2025. May we all find support and ways to wellbeing. May 2025 be the year of solutions, health and happiness. Best wishes to all for a wonderful new year.

[mumellis]

Wow you could be describing me! I too have had balance issues since 2020. Following a 7 day migraine in October it wiped out my balance completely.. couldn`t stand unaided, my eyesight took 12 days to return to normal..constant Auras and my hearing was just weird. Hope you manage to get to the bottom of things and that they improve. Sadly I am just at the beginning of this and at 75 I shall probably have `popped me clogs` by the time I get an appointment .😀

[Sparklingsunshine in reply to mumellis]

Gosh that sounds truly awful you have my sympathies. I would urge you to ask your GP for a referral to your local migraine/ headache clinic as they can offer treatments not available to GP's. Its possible its a virus causing vestibular neuritis or Labrynthitis. My husband had that and it was very incapacitating.

I was told vestibular migraine or VM was rare, but its likely very underdiagnosed. Patients get fobbed off with age, anxiety, another existing medical condition, or Meniere's or BPPV.

But although I've had migraines since I was 16 I've never suffered balance loss or dizziness during an attack so that's a mark against it being VM. My issues started the day after. Hence why this consultant is exploring other options.

I really hope you get some treatment soon. I wouldn't wish this on anyone.