Lorna Thomas, a musician, talks about her experience of Meniere’s disease and how her symptoms, including hearing loss and drop attacks, have increased in severity over the last 20 years. Lorna discusses the treatment options she has explored and is hopeful that endolymphatic sac decompression will control her symptoms.

Meniere’s disease is a long term, progressive condition that affects the balance and hearing parts of the inner ear. Symptoms include acute attacks of vertigo (severe dizziness), fluctuating tinnitus, increasing deafness, and a feeling of pressure in the ear.

If you are experiencing issues discussed in this podcast, contact your GP or healthcare practitioner.

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Hosted by Chantal Boyle and Paul Shriever, Hidden Disabilities Sunflower.

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Transcript

Chantal Boyle:

Joining me today on The Sunflower Conversations is my colleague Paul Shriever. How are you today, Paul?

Paul Shriever:

I'm very well Chantal. The sun is shining.

Chantal Boyle:

Also joining us today is Lorna. Lorna is a musician. Lorna wears the sunflower, because she has Meniere disease, which falls under the category of vestibular disorders. How are you, Lorna?

Lorna Thomas:

I'm great. I'm good. I'm having a good day today.

Chantal Boyle:

So that's good to hear. So we're going to find out about Meniere disease.

Lorna Thomas:

I get varying degrees of vertigo, so I can have clusters of vertigo attacks. Which means that for weeks on end, I can have anything from one to three attacks of vertigo a day, which can last seconds or it can last minutes or hours. I also get drop attacks, which aren't pleasant. They're basically what they sound like. You just literally just fall and collapse to the ground. I had them years and years ago, and then they stopped, and then in December they came back again. Which it's scary, it's not nice.

Chantal Boyle:

Because you know it can happen anywhere.

Lorna Thomas:

Yeah. Any place anytime, anywhere.

Chantal Boyle:

Yeah. Like that, I bet. So, with the vertigo, can you explain to us, because severe dizziness, can you actually explain what is that like to feel that.

Lorna Thomas:

It's not the best thing to have? So it's and being on the [Walts 00:01:38], so your eyes, you have rotational vertigo and sometimes I'll say to my partner, just leave me beside the toilet, put a blanket on me, give me some water and then come and check on me in a couple of hours.

Chantal Boyle:

That's horrendous. And what other symptoms do you experience, Lorna?

Lorna Thomas:

So I have a cacophony of noises, so it's my left side that's affected. So I have constant tinnitus of varying pitches and degrees of volume. I have a wooshing sound that's constantly there as well. I also get a fullness, so it's like your ear feels like totally blocked and that can fluctuate as well. So...

Chantal Boyle:

I was going to say, I did a little bit of reading about it and the fullness in the ear can be an indication of the fluid and then that's perhaps when your symptoms would be more severe. But is there anything you can at that point when you feel that fullness to it not be full?

Lorna Thomas:

No, unfortunately. And that's what some of the medication is meant to help alleviate the fullness and some of the medications work for people amazingly, unfortunately I've got quite a severe, sort of bout of Meniere, so I'm going to have to go down a different route. Yeah. Also I think something that a lot of people don't realize is the air pressure. I get really affected with the low pressure. So when we've just had those four bouts of storms up here, and it's just been a nightmare for me personally, with the pressure just intensified the tinnitus and then the vertigo.

Chantal Boyle:

That's interesting. Yeah. I've heard of people that they do suffer, let me use that word, with migraines and that can be related to weather, I guess it might be the same thing.

Lorna Thomas:

Yeah. Yeah. It's just, so I always know when we're going to get rubbish weather, because my ears are like the first one, tell me.

Chantal Boyle:

Do you get migraines with it or headaches?

Lorna Thomas:

No. So then condition called vestibular migraines, which is, there's a very fine line between that and Meniere disease. So I might be wrong in saying this, but I think the difference is, with Meniere, you get the fluctuating hearing loss and I think, if I remember correctly, with vestibular migraines you don't.

Chantal Boyle:

Do you also experience chronic fatigue?

Lorna Thomas:

Yeah. So with the Meniere, after you've had your vertigo, your body's just like, and you are, you're absolutely exhausted and drained. Sometimes, like in the smallest activity can just knock you, I've sometimes just stayed in bed for like 12 hours or I've slept solid for 12 hours to recover from...

Paul Shriever:

No, no that's similar to epilepsy, isn't it? In many ways. That triggers to me a thought about epilepsy when have a seizure.

Chantal Boyle:

Really?

Paul Shriever:

Yeah. That they're absolutely physically and everything drained from it.

Chantal Boyle:

Is it your brain or is it your physically...

Lorna Thomas:

Yes. Your brain is sort of trying to compensate with all the misinformation that it's being given. So it's working overtime and plus it's trying to compensate for the lack of balance that you have. So it's working like twice as hard or three times as hard to try and keep you upright and stable. But the physicality of actually having the vertigo attack and being sick and having all these symptoms, is physically and mentally draining.

Chantal Boyle:

It's a whole body experience, isn't it?

Lorna Thomas:

Yeah. It's not just the physical experience of the vertigo or the visual experience of the vertigo. It's the whole body is affected.

Chantal Boyle:

And are other people who have Meniere disease. So they experience the same symptoms. Is it kind of the same for everybody?

Lorna Thomas:

Roughly, yeah. In various sort of degrees. Some people will be fortunate and will only have like attacks of vertigo maybe once a month or like a couple of times a year or the medications helping them, sort of alleviate their situation and stuff. So, but the main symptoms are the vertigo, fluctuating hearing loss, the tinnitus and the fullness and pressure.

Chantal Boyle:

Is it something that you were born with?

Lorna Thomas:

Truthfully, I had a night, I had quite a big night. I'd been out partying one night in 2003 and I woke up in the middle of night to go to the bathroom and I walked into the wall.

Chantal Boyle:

Yeah.

Lorna Thomas:

And I was like, hey, what's going on here? And I remember...

Paul Shriever:

[crosstalk 00:06:51] alcohol Lorna.

Lorna Thomas:

Well, that's what I thought at first. And then I was sitting on the toilet and I literally did have spinning, like the whole room was rotating and then it lasted for a whole week.

Chantal Boyle:

Oh my gosh.

Paul Shriever:

My God.

Lorna Thomas:

Yes. I remember going to the doctors and they thought I had a viral infection in my inner ear called labyrinthitis. And they were like, you'll be fine, just plenty of fluids. And then 2004 really kicked off sort of, so I hadn't had anything from that first time, until 2004.

Chantal Boyle:

Do you think that walking into the wall did something to your head or that you walked in the wall because of it?

Lorna Thomas:

Because of it, because my balance gone and I wasn't, you know, aware of what I was... what was happening,

Paul Shriever:

What do you think triggers it?

Lorna Thomas:

Well, it's a buildup of fluid that gets trapped in your inner ear and it sends off the wrong signal to your brain. So it's almost like your brain's going, okay, I'm on a boat, I'm getting travel sick. So let's... I know how to have handle that, so we have to make you sick. So it's just misinformation firing to your brain, but a lot of it is because there's too much fluid getting trapped in your ear. So I know if I'm stressed a lot worse...

Paul Shriever:

Everything affects everything, doesn't it?

Lorna Thomas:

I think that's the whole hard part of coming to realize that's the case, and accepting that your body and how you feel and what your mind is, it's all connected. And try and make changes as subtle as they are to try and make changes, to sort of improve that sort of situation for yourself. 2004, my vertigo, I started getting vertigo a lot more. I would just collapse. I was getting drop attacks in the streets, which was really horrific for myself and for passers by. So it's a bit like when, if you have MS and you can't walk straight and people think you're drunk. I'll be walking my dog and the next thing... you just get this almighty sort of gravitational pull that just pulls you down to the ground and everything's sort of spinning. Just like, yeah, I'm on the ground. How did that happen?

Chantal Boyle:

Does it feel like, a sort of poltergeist has jumped up and grabbed through the floor?

Lorna Thomas:

Yeah. Oh, it's horrible. It really, really isn't nice. So, that's why I think these will be a life saver for people that [crosstalk 00:09:28].

Chantal Boyle:

Yeah.

Lorna Thomas:

Yeah, definitely. So my vertigo was just awful and I did, I literally the first proper year of it, I was pretty much housebound. I didn't want to go out because I was too scared to go out on my own and friends and family were getting worried. So within that first year, the GP was sending lots of letters to ENT. Nobody knew what was happening. Nobody had said it could be Meniere disease. Nobody knew what was going on. Fortunately, my family were in a position to pay for me to go private. And he was like, okay, we need to do an MRI scan just to see what's going on. And we'll inject a blue dye, that'll go around your brain and stuff like that.

Paul Shriever:

You are listening to The Sunflower Conversations with Chantal and Paul to learn more about the Sunflower. Please visit our website details are in the show notes.

Lorna Thomas:

From 2003 to 2004, after that one initial week long period, I had nothing, absolutely nothing. And then 2004, I was getting continual attacks of vertigo that would happen, sort of maybe fortnightly, I would get them fortnightly and stuff and it was building up, the severity of the vertigo was building up. So, I was a music youth worker and I collapsed one time. That's sort of when it was getting progressively worst and it was affecting my life, my career, everything. It was impacting everything. And I've got all my medical records now. So, and it's quite funny to see, tracing back on everything, the amount of letters my GP had to sent to ENT going, look, we're really worried about our patient she needs to be seen, and so that's when my family sort of stepped in and said, no, let's just get you in private and just see actually what's going on and try and get this.

Paul Shriever:

How long did it take to get properly diagnosed?

Lorna Thomas:

And so when I got my MRI scans back, that's when I got the diagnosis. So, from initially seeing him, it was under two months,

Paul Shriever:

Goodness, man, that's actually quite quick, isn't it?

Lorna Thomas:

Yeah. It was really quick.

Paul Shriever:

How did you feel when you got diagnosed?

Lorna Thomas:

I was like, what on earth is this I've never heard of Meniere disease, how's it going to impact? So, I mean, thankfully I discovered the Meniere Society for them and they sent out an information packet of so much information about it.

Paul Shriever:

Is there any history in your family?

Lorna Thomas:

The only thing was my mom had multiple sclerosis. So when I was eight, I started getting tinnitus and I just thought it was normal. I thought everybody had it and it was in my left ear. I just thought it was normal, everybody had it. So I never sort of complained about it. I never sort of brought up that I've got this constant ringing and then I would always get ear aches in my left ear. So I don't know if that's...

Chantal Boyle:

Yeah.

Lorna Thomas:

A connection or...

Paul Shriever:

A precursor to something coming. I don't know.

Chantal Boyle:

My mum. She had vertigo and then she then got tins as a result of that. Afterwards the statistics are between one in 1,000 and one in 2000 of the population. So it's not super common, is it?

Lorna Thomas:

No, no, no. I'm one of the lucky ones, I guess.

Chantal Boyle:

Plans, options have you been...

Lorna Thomas:

So I think I've been on every medication that you, the GP'S and the consultants can give me. So I'm currently, and I've always been on betahistine. So which is a histine that activates the histine receptors, they're in the walls of the blood vessels they're in your inner ear. It's main aim is to reduce the pressure that's in your ear, basically. Try and alleviate the amount of fluid and stuff, which would then therefore sort of help with the vertigo. So that's the most common medication I think in Americas called Serc.

Chantal Boyle:

Okay. So histine is, that's where we get antihistamine.

Lorna Thomas:

Yeah. When I first started taking this medication back in 2004, it was the only one. So the doctors had me on everything, and nothing would settle it and betahistine was the only one that started to sort of calm things down. But then my body randomly started taking allergic reaction to it. So I would come out in huge hives all over my back and up my arms and stuff.

Chantal Boyle:

Is this when it becomes red and itchy?

Lorna Thomas:

Yeah. So it's like this thing in there, then have to take antihistamines as well to sort of counteract. So throughout that first part of the journey, I mean, my Meinere's got so bad that they were wanting to do a labyrinthectomy on me, which is an operation, which destroys the hearing in the vestibular functions of the inner ear. So I would be deaf and I would have to relearn how to walk again, because it was getting so severe.

Paul Shriever:

That's major, Lorna. My goodness.

Lorna Thomas:

And then at the last sort of moment, I decided, no I don't want to do that. So I didn't do that. And weirdly enough, everything stopped. My hearing sort of returned to some better extent than what it previously was. I still had the pressure in my ear and the tinnitus. That's never gone, but the vertigo stopped and it was just so random, but it was great. And then I could get my life back. [crosstalk 00:15:57]

Lorna Thomas:

Yeah. I could build my career again. And at the end of 2019, that's when it all kicked off and it's all kicked off. Even more than [inaudible 00:16:06].

Chantal Boyle:

You mentioned the hearing aides, does the hearing aid to help you combat the vertigo or the tinnitus or...

Lorna Thomas:

No, it's so I can hear.

Chantal Boyle:

Oh, okay. Because you've got such hearing loss.

Lorna Thomas:

Because of the Meneire's it's destroying my hearing. So that's part, you can go death from it. So, I think 70% is destroyed.

Paul Shriever:

You have a hearing impairment, Lorna. Do you have issues with your hearing now?

Lorna Thomas:

Yes, I do have a hearing aid at the minute.

Paul Shriever:

And you use that daily or is that something you...

Lorna Thomas:

No, I have to wear, I find the overall sound of it quite it sort of not very pleasant and it actually can get quite painful sometimes and in the head. So I do wear it when I need to.

Chantal Boyle:

Have you tried alternative therapies?

Lorna Thomas:

I did previously in the first, I like to revert to the first part, which was like 2004 to 2011.

Chantal Boyle:

Yeah.

Lorna Thomas:

In that part, yes. I very much went down the alternative therapies. I would see a chiropractor regularly.

Lorna Thomas:

Because being a musician, I play bass guitar and you know, they're, they're not the lightest things to have around your shoulders all the time and stuff. So I was sort of trying to think, well, is it my neck that's causing this? And you know, so I would go and see a chiropractor and it did help. I don't know if that's, it didn't cure my Meniere's. I would get reflexology on my feet, because what I was realizing as well was that sometimes my, the sort of my feet, there would be a certain spot that would be really, really tender when I was coming up for a vertigo attack and stuff.

Chantal Boyle:

Everything through the feet. Isn't it?

Lorna Thomas:

Yeah. It calmed me down and which in effect, calms the mind.

Chantal Boyle:

Yes. So what's next for you with regard to treatment? Yeah. So

Lorna Thomas:

I have a thing called steroid injections, put a very thin needle through your eardrum that goes all the way through to your inner ear, and they inject this steroid injection. So it's an anti-inflammatory, so it's to try and help alleviate things, but it had actually, and in all fairness, some people have amazing results with that and that's just enough for them. And they can get that, you know, quite sort of once every three months or whenever they need it or once every, but my ear had other plans and it just... yeah, that's when I started getting drop attacks and collapsing.

Chantal Boyle:

It made it worse.

Lorna Thomas:

Yeah. It's made it worse. So I had two of them, thankfully, I'm very fortunate, I have a very good consultant in ENT. And so he was like, the next sort of line is to do a thing called gentamycin injections. And it's an antibiotic that they it's the same way. So they inject straight through into the inner ear and it destroys the balance organ and your hearing. So the theory is that it should stop the vertigo, but being a musician, I was like, no, that's the last thing, because it's irreversible. I wouldn't be able to get my hearing back and that's the last thing. For me, I want to try and preserve as much of my hearing as I can. We had a big discussion and I said to him, there's a surgery that I want to get and it's called [endolymphatic 00:19:50] sac decompression.

Chantal Boyle:

Is it all one word?

Lorna Thomas:

No, decompression is a separate word. Endolymphatic is one word. So, I basically call it a sac decompression. The success rate is higher and it doesn't destroy my hearing. I'm not going to have to sort of be trained to walk or anything like that. So, even though it's intrusive because it's a bigger operation, hopefully keep my hearing and I don't have to lose my balance as well. Biology's not my strong point, so I apologize if I get this wrong...

Chantal Boyle:

Better than what I could.

Lorna Thomas:

The theory is that by doing that, it'll stop the fluid coming into my ear, which will then stop the brain, getting overloaded with all the wrong signals, which should stop the vertigo and release the pressure, as well.

Chantal Boyle:

You are listening to the Sunflower Conversations with Paul and Chantal. To learn more about the Sunflower visit. Our website details are in the show notes.

Chantal Boyle:

So, is it looking like you are on for that operation?

Lorna Thomas:

Oh, it's definitely. I'm getting it done this year.

Chantal Boyle:

And will you have that done near way you live or have you got to travel a long way? It sounds like quite a specialist.

Lorna Thomas:

Yes. So when I spoke to my consultants, so my consultants in Inverness, he was very honest. He's like, I've got a very good professor consultant in Dundee that are way more advanced with Meniere's and their treatment. He was lovely and I had a big chat with him, and out of all the operations that he's done for this, he's had a hundred percent success rate.

Paul Shriever:

You know, how it's impacted you in terms, I don't know, work, socially, relationships. Has it been profound?

Lorna Thomas:

Yeah. Yeah. Yeah. It's I think, because it's a hidden disability, like sometimes I could have the vertigo and people not... because I've hidden it from people that I work with, because I've been scared that it's going to impact me getting work. Especially if you're self-employed, it is hard. It's very isolating. You need to have, and I'm very fortunate and I have a very good support network and I think I would be in such a different head space if I didn't have that support.

Paul Shriever:

And have you joined any support groups? Do you speak to other people that have this condition?

Lorna Thomas:

So, online on Facebook, there's several groups in the UK that are a lifeline to everybody. And they've been a lifeline to me over the last couple of years, especially because it's been so severe recently. You do. Yes, it's hard, because you are on your own. Sometimes dealing with this, as much as partner can empathize and support, you are still, you have that isolation and mentally it can bring you down.

Chantal Boyle:

And how has it affected your music, Lorna? Like, you know, just thinking about, if you are a musician that your essence is music. So you've got hearing loss?

Lorna Thomas:

So playing the bass, I have lost all my base range in my ear and I'm losing the top end as well now. So it can be quite hard to, I struggle with that now. I'm struggling, but before I think, you know what, sometimes in the first period, I sort of trained myself to fight through it and I've be on stage playing fairly big venues and doing my thing and going, look, I'm not, sort of taking your mind off the possibility that a vertigo attack is brewing and concentrating on what you are doing. So getting your brain to refocus on something else. I think that sort of served me well. There was one tour that I had to cancel last minute, which, and it was a big tour in Germany and I felt so, so bad. Definitely it's impacted my career. And you know, I was a music youth worker as well and thankfully they were so sympathetic to what my condition was and if I needed time off for it, then there was no questions asked. That takes the pressure off you a bit.

Chantal Boyle:

Yeah, you do need the people around you to know.

Paul Shriever:

[crosstalk 00:24:31] as well isn't it? To other people around you that also understand that and can support you, that's really, really important.

Lorna Thomas:

Definitely. There was a bit of shame, I guess. Sort of saying to my music, friends, peers, you know about it because I didn't want it to impact that side of my life. And it's always been on a need to know basis. So when this comes out, this'll be the first time, I think there'll be quite a few shocked people.

Chantal Boyle:

Oh, wow. So, I mean, how are you feeling? Is this liberating for you or is this terrifying sharing your personal story?

Lorna Thomas:

A bit of both. A bit of both. But I just think, do you know what it's part of me, it's who I am and I've had to learn to live with it and to accept it and just have to make peace for the music world. Especially, when it comes to your ears, when you're hearing. Nobody talks about issues relating to that, because everybody's scared that they're not going to get hired and...

Paul Shriever:

Yeah, it's like [crosstalk 00:25:37]

Chantal Boyle:

Hearing deteriorates over time anyway, doesn't it? Even if you don't have a disease or [inaudible 00:25:44] condition.

Lorna Thomas:

Yeah. You have to look at your strength and how strong you've become to cope with your day to day life and each situation. You do get through it, you will get through it. We're all going to have... I'm going to have really rubbish days where I can't lift my head off the pillow and I'm hanging onto a bucket and stuff, I know there's going to be better days.

Chantal Boyle:

Why do you wear the Sunflower, Lorna?

Lorna Thomas:

Because I think it gives me that, sort of, peace of mind if I'm out in public and something that [inaudible 00:26:21] that people know that I'm not drunk and just sort of judge, and they can recognize it. And actually I traveled for the first time to Europe the other day, and I used this at the airports and I was amazed, this woman came up to me and said from the airport, she's like, are you exempt from wearing masks? And I was like, no. And she says, do you have a hidden disability? And I was like, yeah. And I was at the queue for the passport control and it was huge. [inaudible 00:26:53] and she's like, come with me. And she just took me straight up to the front.

Chantal Boyle:

Fantastic, what airport?

Lorna Thomas:

It was [Edinburgh 00:27:01] airport, they were totally, their staff was totally on it with the sunflower.

Chantal Boyle:

That's really good to hear, because I'm imagining that you must have been traveling with a fair amount of anxiety.

Lorna Thomas:

It's the first time I've traveled in years. [crosstalk 00:27:19] Yeah. And I do have a walking stick as well at times when my and balance is not great. So I was sort of a bit apprehensive about doing it, but it was great that it was recognized. So, and do you know what I hope by the fact that you guys are taking on Meniere disease that it'll give other people that have Meniere's that are locking themselves away indoors because they're scared to go out. It'll just give them that bit of courage to go, actually it's okay. I've got this and it says everything stay on the back and it'll be okay.

Paul Shriever:

And more awareness.

Chantal Boyle:

So what would you say to someone who's thinking, I don't know whether or not the sunflower would benefit me and support me with my non-visible disability?

Lorna Thomas:

Do it. Embrace it. Don't hide. The more people that are out there wearing them and being more visible with the invisibility of their disease, the better. There's so many. So when I go in the supermarket, supermarkets can be quite hard sort of with the aisles that can bring on the vertigo in like a random way and it makes you unstable. And it is really helping a lot of people, you know, and it helps me get out and feel a bit more safer and not on my own. I think also it's the visual impact as well, because making people see it and go what's that, and they'll maybe Google what the sunflower lanyard is and find out about it and realize, and be a bit more... have a bit more empathy towards people.

Paul Shriever:

How do you see the future for yourself?

Lorna Thomas:

In my ideal world, I would just love it if my vertigo would just, do one. When I had the surgeon that has agreed to my surgery, I cried, because it's the first time in years in the last few years that I've had a bit of hope.

Paul Shriever:

If you had some advice, does somebody else out there who's perhaps experiencing similar symptoms that you've just described, what would that be?

Lorna Thomas:

There's certain things that you can do. So cutting out salt will help. Caffeine. I can't drink caffeine anymore because that was a huge trigger. I can't drink decaf drinks anymore because... I found out even in decaf tea, they have a small amount of caffeine.

Chantal Boyle:

Oh, that's like an alcohol free beer. There's a teeny bit isn't there.

Lorna Thomas:

Yeah. And it would still trigger me off. So low salt caffeine, alcohol would be my first sort of protocol. Next thing would be get on to Facebook groups, because they're going to be the ones, the people there understand firsthand of what you are going through and get in touch with the Meiniere's Society as well, because they're really, really useful. And also, do you know what? I just ran into my doctor, and to get the... maybe I shouldn't say this, but to get... I had to wait, I think it was 18 months to get the consultation with my ENT. And I know that we were in a pandemic, I ended up just phoning his secretary every month to know that you're not alone. We're out there. There's plenty of us out there sort of experienced the same as what you're going or we're experiencing the same thing. That's where I would definitely say, get in touch with some of the social media groups. Vent there, as much as you like, there's lots of people venting about this disease on there.

Paul Shriever:

Well Lorna, on behalf of everybody, Chantal myself and everybody, we wish you the very best.

Lorna Thomas:

Oh, thank you.

Chantal Boyle:

Yeah, and keep in touch and let us know.

Lorna Thomas:

I will.

Chantal Boyle:

All right guys.

 

Speaker 4:

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