Latest / The Dr Louise Newson Podcast / 37 - Chronic migraine and PMDD: Jessica’s story

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37 - Chronic migraine and PMDD: Jessica’s story · The Dr Louise Newson Podcast

0:00
I've got Jess, my oldest daughter, on my podcast today.
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It's quite an emotional podcast because we're talking about
0:06
living with a chronic disease. We talk about migraine, we talk
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about PMDD, we talk about side effects of other medication that
0:13
may or may not help a disorder and how she's really built up
0:18
and transformed her life by making lots and lots of
0:22
different adjustments. But also, sadly, some of the
0:25
treatments that haven't helped her and some of the ways doctors
0:28
have spoken to her as well. So there's a lot to listen to in
0:31
this podcast. It's quite sensitive, but it's a
0:33
really important conversation. So Jessica, you're here in real
0:40
life. Yeah.
0:41
Last time we did it remotely. You're procast.
0:44
We did. And you had long hair, Yes.
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And you might or might not been taking hormones.
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Can't quite. Remember, I think I was taking
0:53
estrogen. So I was talking to someone this
0:56
morning, actually I've not met before, and I was telling her a
0:59
bit about you. And I hope you don't mind me
1:02
saying you have, like, the cleanest life ever.
1:05
And it's got better and better in that you've never been bad.
1:08
But you really, really. You don't drink alcohol, you
1:11
don't eat processed foods, your natural fibres, everything.
1:16
But you've had to be like this because of your migraines.
1:19
Yeah. And I always feel a bit guilty
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because I, I migraine is an inherited condition that I have
1:24
given you. I've given you lots of love, but
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I will save you any migraine. And I was telling her about the
1:31
year that you had, which we don't really want to talk about
1:33
because it was horrendous. But you have been medicalized
1:39
and given medication, so many medications by different
1:46
neurologists, different specialties, different.
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Like you've had different neurologists that you've seen,
1:51
you've had different chest consultants that you've seen,
1:55
you've seen different GPS, you've had different types of
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medication. They've been different doses.
2:01
Some of them have been given in an off label dose, off license
2:05
use. Yeah.
2:08
And you've also had hormones. You still have migraines.
2:12
You're wearing your glasses because the light in here is
2:15
could trigger a migraine. So you're always really
2:18
sensitive. But out of all the medicines
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that you've tried over the last five years, which ones have made
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the best difference to your life?
2:28
Well, obviously HRT has well, the I, I feel like we might need
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to give some background to the people listening to the podcast.
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Obviously always have migraine. It's a genetic neurological
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disorder. Does he said it's from you?
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Like Sophie sometimes gets migraine and I have my migraine
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my whole life. And it gradually got worse and
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worse until like when I was 16, started taking medication to try
2:59
and prevent migraine. And then it was just constantly
3:03
snowballing. And it led to what in lockdown
3:06
just being bad bound for weeks and weeks with just terrible
3:10
migraines and CC and those different medications and seeing
3:15
the top neurologist in Manchester because that's where
3:18
my school was. And the neurologist just said
3:21
this is your quality of life and you need to accept it.
3:23
And then came to London, just got worse and worse and worse.
3:27
Had things like medication overuse headache, was told I
3:30
couldn't be helped and then I met a neurologist who was
3:34
amazing and has changed my life. But as you know it took a couple
3:37
years and when we met him he took an amazingly detailed
3:41
history and said I will be able to sort you.
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It will take time. We need to unravel everything
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during that process. Had really severe memory loss
3:51
and I lost access to my short term and my long term memory and
3:55
couldn't do anything. I'm a trombonist.
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I can read music, had to interrupt my studies, I can
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paint. And then at that time I was
4:02
having like 21, I think, cranial nerve block injections every
4:06
week for months. And I had that, and I also had a
4:10
treatment in hospital which reset all of the pain pathways
4:13
in my brain. And I made all of the lifestyle
4:16
changes that I could possibly make for migraine.
4:20
And I was really interested in things like Alexander Technique
4:24
and NLP, neurolinguistic programming and rewiring my
4:27
brain and how can I elevate myself and how can I make the 1%
4:31
gains to feel better. And a combination of all the
4:36
holistic treatments as well as all like the amazing work that
4:41
my neurologist has done has led to now me being able to have
4:44
this quality of life, which is the best it's ever been.
4:48
And I don't, I never fathom that I would be able to live in the
4:52
way I do now. And during that time with memory
4:56
loss and child and loads of different medications and some
4:59
being off license, not that that matters and some being licensed
5:03
and you know, being given things like antipsychotic medication
5:07
because that's meant to help for migraine Bacchi, it didn't help
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and we didn't know that. But it's just terrible
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medication side effects. Taking HRT which you notice that
5:18
in during lockdown when I started getting really ill was
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originally we just took it because every month you realise
5:27
that I was really depressed for like 3-4 days and I wasn't even
5:33
aware of my cycle at the time because my periods were so heavy
5:35
because so my periods were so heavy.
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So I had a coil, so I didn't have any bleeding and we noticed
5:41
it was my cycle started taking estrogen all of a sudden I
5:45
didn't feel this flatness, but also I wasn't getting migraines
5:48
that were triggered by hormonal fluctuations, which was life
5:52
changing. And when I was really ill and in
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so much pain if you use down the line, I know if I hadn't had the
6:01
HRT at the time and I had those fluctuations, I wouldn't be here
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today. So I was, people can't
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comprehend of the, you know, but people can't comprehend how
6:13
I'll, I was. So they're taking isogen and now
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I take testosterone and progesterone too.
6:20
And it's changed my life. I was talking to this man that I
6:23
met yesterday, an 80 year old man and I, you know, saying
6:29
what's your mum do for work? And I said, you know, she's in
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menopause specialist and GP and he's sort of freaked.
6:36
And I said obvious, it's not really to do menopause.
6:38
Menopause is a long term hormone deficiency.
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It's to do with hormonal imbalances.
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And that happens throughout, you know, your whole lifespan.
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It's not just at the end of your life.
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And all of a sudden, like this man just got it.
6:52
And he was so on board with what I was saying.
6:55
And yeah, so HRT has been like obviously incredible for me.
7:01
Yeah, and I, I don't want to get emotional because it's been a
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really hard journey for everybody in the family.
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And I think, you know, with a lot of my work, you, I, you
7:10
know, the push backs that I get. And I think it's so important
7:14
for people to understand your story and other people's story
7:18
because holistic medicine is so important.
7:21
We have to look at everything. Yeah.
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And with migraine, there are so many different triggers.
7:26
I have migraine, but not nearly as bad as you.
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And it's trying to unpick absolutely everything.
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And we do it all the time with our patients as well.
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And hormonal changes is one part of it.
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And I still feel guilty because a while ago, before I understood
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as much as I do know about hormones, someone did prescribe
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for you a synthetic progesterone to try and help with your
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bleeding. And I remember walking down
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Baker Street in London and your skin was terrible.
7:53
Do you remember your mood was very flat?
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And you said to me, I think it's progesterone.
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And I said, oh, I don't think it is because I didn't know how
8:02
else to help you at the time. And looking back, that was
8:06
totally the wrong thing for you to have a synthetic hormone in
8:08
your body. But you know, when people are
8:11
really ill, you do clutch at straws.
8:13
And I've really tried to be your mum, not your doctor.
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And I've sat in so many consultations with you and
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listened to different consultation style.
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And when that doctor in Manchester said that's just the
8:26
way that you're going to be. And he offered you a drug called
8:29
topiramate which some people but it does cause a lot of side
8:33
effects. And we were trying to ask about
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having Botox which you have as well regularly and he said no
8:39
because you have to fail 3 medications before you can have.
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I know and it's. The it's.
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Crazy these guys because for example, it's yeah it's like
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fails 3 medications at the highest possible dose you can
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tolerate. So is it sick form?
8:54
Is it music specialist sick form?
8:56
Like it was really intense and I remember I was trying to stomach
9:02
the highest possible dose I could have of propaninol, which
9:06
is beta blocker. And I'm incredibly, we've found
9:09
out of the, I'm really sensitive to medication.
9:12
So don't take a daily medication now other than HRT.
9:15
And I was going to perform and I just thought, I don't feel
9:17
excited. I don't like music.
9:19
I'm, I don't understand what's happening to me.
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And I spoke to you and you said, Oh yeah, didn't you realize that
9:25
you're not going to feel any psychological effects of
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anxiety? I was like, no, because I was
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just prescribed this. I was told this is for migraine.
9:32
It's not going to, you know, And when I was trying to stomach a
9:35
really high dose of candestartan and I was just.
9:39
The fainting, the it's just, it's just so bad, but.
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This and that's a mild medication.
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This is what? Surprised me.
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So candestartan is a blood pressure lowering treatment.
9:48
It's not license for migraine, but off license, we know it can
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help some people for prophylaxis.
9:52
It's mentioning guidelines, but no one ever told you the
9:56
potential side effects of these medications.
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You were given them in good faith, which is fine.
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But it just surprises me that no one sat down and said, but you
10:05
might have this side effect, you might have that.
10:06
Just look out for this. So when you were feeling flatter
10:10
in your mood on the Propranolol, you thought it could have been
10:12
anything or you were depressed. And there are lots of times that
10:16
you have been very low in your mood, but giving you
10:19
antidepressants would not have been the right thing.
10:22
I remember you when you were assessed by a psychologist in
10:24
Queen's Square and they saying that you might have depression.
10:27
Well, of course, because you couldn't function or.
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Yeah, I mean, I was diagnosed with severe depression because,
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like, I couldn't, you know, is it the point of do I piss myself
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or do I get out of bed because I'm in so much pain?
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I actually don't think I can walk to go to the bathroom, you
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know, It's not. No.
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It's not light stuff. No, and your migraines just
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wouldn't lift and wouldn't improve and you had many times
10:53
where they were so bad. But we're not dwelling on that
10:55
because they're so much better. But it's the way that, you know,
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I, I spend a lot of time in consultations with patients and
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I'm really honest with them. And I'd always say, look, I, I'm
11:07
not sure how I can help you or I've done as much as I can, but
11:09
I'd like you to see someone else for an opinion.
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But that was never offered. It was very much, this is the
11:14
way you're going to be now. And if we'd listened to a few of
11:17
the doctors years ago, I can't even imagine what would have
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happened. But when you did see the doctor
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that you're under now in Queen Square and just to having time
11:27
where he'd listened to you and I remember coming away and
11:30
thinking, wow, he actually understands.
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And it's not a quick fix. And I think that's the same with
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any any chronic condition. And obviously migraine is a
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chronic WHO. Realizing, you know, all the
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lifestyle changes, it's going to take at least three months for
11:42
you to basically feel any benefit and all these kinds of
11:46
things. And at the time when you're so
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I'll, you know, and people would say to me, oh, maybe maybe you
11:51
should just drink more water. And you think, fuck off.
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Like, you don't know what I've gone through.
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This is actually ridiculous. And now that I'm more balanced
12:01
day-to-day and most of my time is pain free and I occasionally
12:06
have migraine, I realize obviously, yeah, it's really
12:09
beneficial that you drink, you know, so many, you know, how
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saying about this book I read the other day and those people
12:15
chronically dehydrated. But it's just as all these tiny
12:19
little things all come together and all these 1% gains which you
12:24
can do. But then also thinking about
12:26
other people with hormonal issues which are diagnosed not
12:31
as hormonal issues. And you think almost all the
12:34
incremental gains and benefits in your body from having the
12:38
right hormones for your body so. It's a mind.
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It's so. Frustrating and then thinking
12:43
about people not being listened to by their doctors or having
12:46
good bedside manner, like I was saying about my friend the other
12:49
day who their gynecologist just said, well, have you ever
12:53
considered that maybe you just have painful periods and that's
12:55
just how it? Is you think it's awful, it's an
12:59
uphill battle and you know, you've been experiencing the
13:02
medical system a lot earlier than a lot of people have.
13:05
But I just wanted to, I know we've talked before about PMDD,
13:08
premenstrual dysphoric disorder, but it is important because I
13:12
see a lot of people who are your age, do you know you're 22, but
13:16
you're age early 20s and it's always dismissed.
13:20
Oh, you will feel a bit bad. It's just before your period, so
13:22
you're just going to have a bad few days.
13:24
But what really resonated with me, and I know a lot of people
13:26
when I talk about it is when you tell me it's those three days,
13:30
you didn't want to pick up your trombone, you didn't want to
13:33
join in when we were in COVID, like just household bills.
13:36
You just felt really flat and joined us, but it was when you
13:39
said to me, but it's the rest of the days where you're dreading
13:42
those days coming. And also that, you know, if
13:45
we're just thinking about trombone playing, if you don't,
13:48
it's very physical, intimate. If I don't play for three days,
13:51
it will take at least three days to get my playing back to the
13:54
standard it was before those three days even happened.
13:57
So then you've lost so much more time.
14:01
And then also you've got that with skills and not continuing
14:05
doing work that I do enjoy doing.
14:06
But in those three days, you think, Oh my God, do I do I want
14:10
to quit music? Do I just hate everything that's
14:13
in my life? And it's obviously not to do
14:15
with that. And then when you come out of
14:17
that, you look back and you think, why did I feel that bad?
14:20
Maybe there is something deep rooted, maybe I don't like
14:23
music. And actually it's not to do with
14:25
that. It's maybe your estrogen was a
14:27
bit low. Yeah.
14:28
So it's not just these three days where you're suffering, is
14:30
it you? Know, and there's always
14:32
psychological reflection on it and it's, it's always, it's the
14:36
same, you know, when we say if I have a migraine and how it
14:39
impacts your brain with these diagonal waveforms, which can
14:42
cause like depression and anxiety.
14:44
Well, they do 'cause depression and anxiety in the moment.
14:46
And you always say, don't think about it when you have a
14:48
migraine. Let's talk about it tomorrow if
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you're still worried about this and always comes to tomorrow.
14:54
And it's Oh yeah, that was a migraine thought that wasn't me.
14:58
But when you're when that was happening every month, you
15:01
think, oh, maybe that is me. Yeah.
15:04
And I know I've seen quite a few of your friends as patients who
15:07
have suffered as well because they've been well open with you,
15:10
talking to you, or you've picked it up on them because they're
15:13
maybe not coming to rehearsals or they're having symptoms in a
15:16
cyclical way. Now it's great that discussions
15:19
are really open, especially my generation.
15:22
People say, oh, I'm struggling with this and I feel this way.
15:25
And I, I wonder the discussions when I'm not there, people go,
15:29
yeah, I feel that way too. It's shit.
15:31
And it's this kind of solidarity thing.
15:33
When I'm there, I'm like, oh, did you know that she doesn't
15:36
need to be like this? And people, you know, and I say,
15:39
I feel the same every single day.
15:42
I don't have these dips, my mood is the same, I feel the same
15:46
person. My like, identity and sense of
15:48
self minus when I have migraine is really secure and people
15:53
don't. Realise that surprise people
15:54
when you say that. Yeah, everyone is always
15:57
shocked. Because so many people have
16:00
hormonal changes. So many people have hormonal.
16:02
But it's been normalised. Yeah, completely.
16:04
So when I say, oh, there is actually a solution, you don't
16:06
need to feel this way, everyone's really shocked.
16:09
And then the whole thing is also I'm there for those discussions.
16:12
Obviously, you know, my friends can they know where to go for
16:15
help. But what about all the people
16:18
that can't go anywhere for help? You know, all the people that
16:23
don't know that the solutions and you just have to deal with
16:26
the pain or whatever it is that, you know, bowel issues or like
16:31
vaginal dryness. That's a big thing.
16:33
And people just thought you have to deal with it.
16:35
It's not fair, is it? No.
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I'm really thrilled to share with you that I'm doing my UK
17:38
theatre tour next year. It starts the 14th of April and
17:42
goes on for two months. I'm coming to lots of places all
17:46
over the UK and I'm going to be talking a lot about hormones, a
17:50
lot about the history, what's happened and what's gone wrong
17:53
for so many women and how we can change this.
17:57
It's going to be uplifting, it's going to be sad, it's going to
18:00
be happy and there's a lot of opportunity to ask questions as
18:04
well. I'm just so excited about
18:06
meeting so many of you. So head to the show notes and
18:09
you can book tickets. So does it when you say to
18:15
people that you're taking hormones, do they are they
18:18
surprised when you're young? I really, I actually really like
18:22
the reaction from guys when I say, Oh yeah, I take estrogen
18:27
and testosterone and gestrone. They get what you say,
18:30
testosterone go, oh, yeah, like I probably have, you know, equal
18:35
to or more testosterone in my body now than you do as a man.
18:38
And as a man, you've got estrogen in your body and it's
18:41
being produced in the brain. And they just, it sort of blows
18:45
their minds open. Yeah.
18:48
People are really shocked by it. And then they're really
18:50
intrigued and they're really curious.
18:52
And they often go, oh, yeah, I know someone that could benefit
18:56
from that. I know someone that feels oh I
18:58
had no idea that these were linked.
19:00
But if you tell people what you were taking hormones in
19:02
contraceptive pill, they wouldn't.
19:04
No outline it, no, even though they're synthetic, so they're
19:08
it's, it's not the hormones, it's the synthetic version of
19:11
the hormones. It's not the same as the hormone
19:12
itself. Yeah, it's interesting, isn't
19:14
it, Because all you're doing is is topping up what your body
19:17
wasn't miss what wasn't producing and you have a hormone
19:20
or coil in which is probably stopping you ovulate and
19:24
stopping your own natural hormones as well because it's.
19:26
A synthetic because it's. Synthetic.
19:28
So all you're doing is having a very low dose, which is really
19:31
helping. But you were using estrogen
19:33
through the skin, the estrogen patches, but when the weather
19:36
was hot. God, that was terrible.
19:38
That was so that was so bad because they, the patches
19:42
weren't sticking and I didn't realize that it was the glue
19:47
that the esotiles in. So that's how it's absorbed.
19:51
And I was just, yeah, I was just being terrible.
19:54
Like I was getting this vaginal dryness I was getting, I was
19:57
getting loads of ingrown hairs. I never get ingrown hairs.
19:59
I don't even shave my legs. And I was like, my body just.
20:03
Wasn't happy. It's getting ingrown has like my
20:06
eyes were dry. I was feeling way more anxious.
20:10
I thought maybe I was worried about at the time I was in Basel
20:17
like doing sack but playing, which is a historical trombone
20:21
for those who don't know. And it was a really exciting
20:24
thing. And I was just, I was really
20:27
overwhelmed. And we even remember we had to,
20:30
I had to change the dates. I was going to Basil because
20:33
when, yeah, I forget about this. My migraine was so bad.
20:36
And we didn't know why my migraine was so bad.
20:38
And it was so stressful because it was the worst it had been in
20:42
years. And when my daddy had to come to
20:44
London, look after me and it was just because my patches weren't
20:48
sticking. Because I remember asking you
20:50
about physical symptoms because you were getting palpitations.
20:53
Yeah, as well. So many heart palpitations and I
20:56
hadn't had them. Had heart palpitations when I
20:58
was in sick form when I wasn't taking HRT.
21:01
So you had palpitations, you had vaginal dryness?
21:03
Since like 20. Heart palpitations.
21:05
Yeah, cystitis. That was terrible.
21:07
So you use vaginal hormones as well?
21:09
Don't. You my tinnitus was worse.
21:11
Yeah, yeah. You know, yeah, sorry.
21:15
Yeah, I, I use pesaries. They're great.
21:18
Which which, as I've just done a podcast earlier, which is coming
21:21
out with a urologist who's great, and we were talking a lot
21:24
about vaginal hormones, how younger people can use them as
21:27
well, especially when it comes to cystitis and urinary
21:30
symptoms. Yeah, and, and frequency as
21:32
well. But The thing is, in medicine,
21:35
if we don't ask the questions as doctors, we don't get the
21:37
answers. Yeah.
21:38
So I could have, if I was a pure migraine specialist, I would
21:42
have just concentrated on your migraines that had got worse
21:45
that time when you had to cancel that trip.
21:48
But I'm not, I'm think about everything all the time.
21:50
So asking those specific questions about your
21:53
palpitations, your other physical symptoms puts together.
21:57
So then it changed preparation. Because I I was having joint
22:00
pain. Yeah, yeah.
22:02
It was, it was actually kind of crazy.
22:04
Wasn't it? But I think you can see how
22:06
people can gaslight themselves as well by they they think it's
22:11
their fault or they think there's something else going on
22:14
and don't. So then if they're not telling
22:15
the doctors, the doctors don't always pick up all the symptoms.
22:19
And that's why it's really important that doctors and
22:22
clinicians are really, really well trained so they can ask the
22:25
right question. So it's hard to know everything
22:27
that you need to remember to say to a clinician and also
22:31
everything which is relevant to a clinician because, you know,
22:33
obviously you or daddy come to my appointments because you're
22:36
able to talk in like medical jargon.
22:39
And sometimes I'll be there and I'll, you know, and I'll say,
22:43
OK, so I've had this, this, this, this, this.
22:45
And you do it less than daddy, but Daddy will go, oh, you don't
22:48
need to tell them that that's not relevant.
22:49
But this thing is really relevant that you just said.
22:51
Obviously as a layperson, I don't know what's relevant.
22:55
And if you don't have a medic that's not by your side saying,
22:57
oh, actually she forgot to tell you that this also happened.
23:01
So one of the drugs that you were given was an inhaler and
23:06
it's very similar to something called oxybutynin, which is a
23:09
anti muscular in it treatment that some of the guidelines say
23:13
can be given to women as a treatment for hot flushes
23:16
because can help sometimes with hot flushes.
23:21
But when when you had it, it caused lots of symptoms.
23:25
Do you remember? Well that was when I started
23:27
taking pessaries because I all of a sudden had like such bad
23:34
vaginal dryness I could barely walk.
23:37
And it was, it was terrible. It was so bad.
23:41
But you also you're you you're you couldn't read very well on
23:45
your remember you. Yeah, and I had all these, like,
23:48
black spots in the corner of my vision, and it felt like I felt
23:52
so on edge because it felt like there was just something behind
23:55
me that I couldn't quite see. And your skin was really dry as
23:58
well. Yeah, that was, that was
23:59
terrible. And then my lips weren't good
24:01
and my lips were splitting and then that was terrible for
24:04
playing trombone. And then I was more prone to
24:06
getting spots around here as well.
24:08
And obviously that was really it was, it was.
24:11
Awful. So I'm, I'm sort of bringing
24:13
that up not to. Give you children came from but
24:16
what? What I was thinking was when
24:19
you, when we realized that it was the inhaler that was similar
24:21
to the oxybutynin and that you have a having all these anti
24:24
muscular in it side effects and you stopped and you started to
24:26
feel a lot better. I remember a few weeks later
24:29
saying to you, do you know what? That's a medication that people
24:31
use as a non hormonal treatment. I know and I remember I just
24:34
started crying. I know your person's tears
24:36
thinking about the women. Yeah.
24:39
And this is where I have an issue.
24:40
So I don't mind if people take hormones or not.
24:43
But what I feel really sad is these non hormonal treatments
24:46
that are given to women to try and maybe help a hot flash
24:49
because there isn't very good evidence that they work for
24:51
other symptoms and they don't work for the health benefits.
24:54
So women are given them like you've been given drugs in good
24:56
faith from doctors, but they're not talking about the side
24:58
effects. But the side effects are often
25:00
worse than the symptoms that they're trying to treat.
25:03
And you know, you are sensitive medication.
25:05
Not everyone on oxybutynin is going to have those symptoms.
25:07
But oxybutynin is is also associated with increased risk
25:10
of dementia. And your memory was going as
25:13
well when you were taking that inhaler because we were worried
25:16
there was something else going on.
25:18
So the power of these other drugs, I think, just can't be
25:23
underestimated. I know.
25:25
So you also had olanzapine, which is an antipsychotic
25:28
medication. So it's used a lot for people
25:31
with psychosis, very severe depression.
25:33
It's sometimes used. And I see a lot of women who
25:36
have been misdiagnosed with a mental health condition when
25:40
it's related to their hormones. And a lot of these people are
25:43
given antipsychotic medication. And we know that they have
25:47
different side effects, but a lot of people experience side
25:50
effects with them. And it didn't help you did it.
25:54
It was given to me in good faith and that it could help.
25:57
And I don't, you know, I'm completely fine that it was
26:01
prescribed me and I tried it and it didn't work.
26:04
And I think, you know, for some people that will be the
26:07
medication and that helps them and that's great.
26:11
But people also don't know and they're not being told and
26:15
doctors maybe aren't aware or aren't aware that oh, also this
26:20
could help. So maybe also try this
26:21
medication, see what you prefer. Like maybe it's a combination.
26:26
It just is is really sad to think that there are so many
26:32
people that don't know the quality of life that they could
26:35
have. And I think this is where they
26:39
us knowing that the side effects are related to a drug, but a lot
26:42
of people think it's part of their condition.
26:44
So they're living with side effects of a drug that they
26:47
might not have need to have. And, you know, some of our data
26:50
shows that when we give hormones and add in testosterone, we can
26:54
de prescribe so we can reduce the prescribing of
26:57
antidepressants, antipsychotics, some of the other painkillers
27:01
and drugs as well. And it's always a balance and we
27:05
always like trying to look at optimizing treatment for our
27:09
patients. But sometimes once you're on a
27:11
medication, that's it, you just carry on with it.
27:13
And that's a real problem. I know.
27:16
So you also play the trombone and all sorts of groups, all
27:20
sorts of orchestras, all sorts of people.
27:22
And you're often like saying to me, Mummy, this person is so
27:26
obviously menopausal, This especially when you're with
27:27
older people. And it's one of those things,
27:30
once you see, it's hard to Unsee.
27:33
But like, you're really young and you're still seeing the
27:36
suffering that's going on all the time.
27:38
Do you know, do you think in your mind that things are going
27:40
to change? Yeah.
27:44
Do you? Well, yeah, I think do.
27:48
You think there's a difference in your generation of people
27:50
like your friends? Once you educate them, talk to
27:52
them. Are they?
27:53
Are they? Once I think differently, once I
27:55
talk to them about things and you know, obviously so they can
28:00
look at balance and like loads of free resources online, then
28:07
like it changes their life and then they're always talking
28:09
about it. And it's I was, I don't know if
28:12
I was saying it to Sophie the other day, but people often ask
28:15
me when I see them. They go, oh, how's your mum
28:18
like? And that's the first thing they
28:19
asked before going how's your partner?
28:22
How's your mum? How's your dad?
28:25
How's Alex? You know, people are really
28:28
interested in the work that you're doing and how it can
28:31
positively impact them and their lives.
28:35
So I hope it will, it will change and shift.
28:39
But I think one of the sort of scary things is when people are
28:45
aware of, you know, maybe someone's OK, it's talking about
28:49
the menopause and they don't see it as a taboo.
28:51
And they think, yeah, we need we need to talk about the
28:52
menopause. It's important to have awareness
28:54
there. That's great.
28:57
But then it stops at the awareness and there's no.
29:00
It's not enough, is it? They don't, they don't know
29:03
about treatment or they've been told don't go near HRT, yeah, or
29:09
all of this kind of stuff. And that's really sad.
29:13
Or people say, oh, yeah, I'm, I'm through it now.
29:16
So I don't, you know, I wouldn't benefit my HRT anyway.
29:21
And you think, well, even if you, you just look at preventing
29:24
Alzheimer's, you know, yeah, I was, you've we I'm not.
29:30
You can talk to other people about this, this, but I just
29:33
think it's really important to push a conversation further to
29:39
be like, this doesn't need to be an issue.
29:40
This just needs to be, you know, in the same way you know how you
29:46
always use the example of your thyroid isn't working.
29:49
Here's some thyroxine. Great.
29:50
It's not this whole. Oh, we need to talk about like
29:53
all the issues around if should be.
29:56
Yeah, it's yeah, it should be simpler because as you say, is
29:59
is simple. It's very simple.
30:01
Yeah, for the vast majority of people.
30:04
And even when it's not simple and it's more nuanced and
30:07
complicated, you know, as a esteemed medical person, like
30:13
you have the expertise and training and, you know, clinical
30:18
practice to be able to help people in a newer sway.
30:21
But yeah, so I just think that's, yeah, it's really sad.
30:26
It is sad because there is a simple solution for a problem
30:28
that's affecting every woman. So we've talked a lot.
30:32
There's been a lot of medical jargon, there's been lots of
30:34
things. But I know there will be people
30:36
listening who have chronic diseases.
30:37
There'll be people listening with migraines, maybe
30:39
fibromyalgia, chronic pain. So I just want three take home
30:44
tips from you. You are really good advocate for
30:47
yourself. You're really good advocate for
30:49
your future health. But it's not easy and you've
30:53
worked really hard at it and you know the proof is in the pudding
30:57
and it takes time and patience. Every little adjustment, every
31:01
little you treatment lifestyle, you've had to wait.
31:04
So people that are maybe listening, it was alright for
31:06
her. She looks great, she feels
31:08
great. We've been really open that it
31:10
hasn't been easy, not just for you, but for us as a family.
31:14
So what three things do you think people listening could
31:17
think, right? This is what's going to help.
31:19
What would you suggest people to do if they've got a chronic
31:22
disease disease and they feel that they're not getting to the
31:26
place that they want to well? That's really hard.
31:28
And I think a big thing is people are not being listened to
31:36
and you talk about, you know, people being medically gaslit
31:42
and told, Oh, it can't be that bad or oh, you've got this one
31:44
really big bad symptoms. So we're not going to talk about
31:47
all the other symptoms. And you know, it's the same when
31:50
I was really I'll and people like, Oh, you can't be that I'll
31:53
and it's you know, people don't don't know.
31:57
So I think, you know, being listened to is a really big
32:02
thing. Or finally someone that can
32:03
listen to you and being validated in how you're feeling
32:10
because it's like, it's rubbish. Yeah, it's real.
32:14
It's real and it's rubbish. Yeah.
32:15
So, so I think that's probably the main thing I I don't know,
32:20
because when I was really ill, everyone just said, oh, you need
32:24
to, you know, you're going to be so resilient.
32:26
This is great. Like, this is character
32:28
building. I think I don't want to be
32:30
resilient because I don't want to be ill, you know?
32:33
So I feel like giving advice to people saying I'll be resilient,
32:39
That's not the advice I wanted to hear when I was like, I'll,
32:45
you know, But I remember one time I said to like my dad, you
32:53
know, if you don't know what to say, like, just give me a hug.
32:57
And I think that's having that connection with people is really
33:00
important because when you're I'll, your community just goes,
33:04
yeah, sometimes. You can't get upset.
33:07
A tear hasn't been shed, so yeah.
33:10
So. But yeah, so.
33:12
Being listened, being. Listened to having community
33:15
yeah. And for other people like coming
33:19
to that person for that community, yeah.
33:22
Knowing that like, nothing is permanent and yeah, states can
33:27
shift, even if you feel so stuck in the moment and sometimes the
33:30
present moment feels so drawn out and you think this actually
33:34
isn't going to change. But it will but it.
33:36
Will and it's so and it's so incremental and small and then
33:41
you look back and you go, oh, I was there.
33:44
Now I'm. Here.
33:45
And that's so important. Yeah, and you have to realise
33:48
the value and like even the smallest things like coming in
33:51
here in the lights been triggering battery, my head's
33:54
clear and I've got my special glasses if you talk ages, but
33:58
I've got my special glasses on and it's fine and I'm able to
34:01
manage and like I feel great and the rest of my day is really
34:04
exciting and go to a talk and going to a gig and but a couple
34:09
of years ago I wouldn't have even been able to walk in this.
34:11
Building so looking at progress. I wouldn't been able to travel
34:15
to even get here. You just.
34:16
I know it's amazing, but I think that is.
34:19
Your progress, whatever that is. Absolutely.
34:21
And you need to work with people who understand that progress and
34:24
can encourage and support. So I know it's been quite
34:27
emotional, but I'm really grateful because I know what
34:29
you're saying and the strength that you have as a 22 year old
34:32
is quite formidable. So thank you for.
34:34
Coming on. You're welcome.
34:39
You're right, it's quite a lot. Well done.