Episode 27 – POTS Diaries with Henry from the UK

00:01 Announcer: Welcome to the Standing Up to POTS podcast, otherwise known as the POTScast. This podcast is dedicated to educating and empowering the community about postural orthostatic tachycardia syndrome, commonly referred to as POTS. This invisible illness impacts millions and we are committed to explaining the basics, raising awareness, exploring the research, and empowering patients to not only survive, but thrive. This is the Standing Up to POTS podcast.

00:29 Jill (Host): Hello fellow POTS patients and nice people who care about POTS patients. I'm Jill Brook and today we have an episode of The POTS Diaries where we get to know someone in the POTS community and hear their story. Today we are speaking with Henry, who is our first patient, to share an experience from another country outside the USA. Henry, thank you so much for joining us today.

00:52 Henry (Guest): Hello. Hello, Jill, and welcome from me in London in the UK here. Hi.

00:58 Jill (Host): So thank you for being here and let's just start with some basics about you. What is your age and we know you live in London now, but where did you grow up?

01:10 Henry (Guest): OK sure I'm 54 soon to be 55 next month and I grew up in central London in a district called Battersea, which is by the River Thames and I now live just across the river in Chelsea. So, very much central London and I've pretty much been in London for most of my life.

01:33 Jill (Host): What would your friends or family say are some words or phrases that would describe you?

01:41 Henry (Guest): Interesting question. I guess we'd go for "thoughtful" I guess from some of them we might hear a word like "hypochondriac", which probably isn't unusual in our community.

01:54 Jill (Host): Yeah, right? [Laughs]

01:56 Henry (Guest): Sensitive. Um, family orientated.

02:00 Jill (Host): Can you give us a snapshot of your childhood?

02:04 Henry (Guest): Umm, sure. Happy memories of childhood. I had a lot of friends. We lived by a big park, although we were in a big city, so I got I did manage to get my share of fresh air and exercise. And movement for me at a young age was fine not problematic. However, looking back, I guess my earliest suggestions of some of the health issues, my mother always tells me how I would climb up the big slide in the playground. I'd get half away and I get very frightened about the height and my mother all very embarrassed because all the poor children behind me would have to have to climb back downstairs to let me off. That was sort of up to age 5-6, I guess. I remember running into a brick post - a brick wall - at private nursery school and cutting my head open and needing stitches, so I'm not quite sure what happened there - running straight into a brick wall. But ah, I then started getting sort of more comfortable with heights and movement and kind of lost a bit of that fear. But childhood was good, and I and fortunate that I still have some childhood friends. Again, looking back, I'll just throw in here - I had motion sickness and car sickness. Back in the 1970s, a lot of the cars had a very strong petrol smell, and that, along with the motion seemed to trigger sickness for me, which we'll find out later is linked very much to one of my diagnoses, which is vestibular migraine, and I'll talk more about that later. It features often with POTS, apparently.

03:48 Jill (Host): Right, that makes sense. So at what age did you start feeling like health issues became kind of major?

03:59 Henry (Guest): Major? OK. Well with my sort of muscular skeletal frame I would do things and often in private, you know, when I had a moment in my room, I would find myself shrugging my shoulders a lot and extending my arms and locking the elbows and things and my joints. And I can't explain to you why I did that. But it rings a big bell when I hear that some of the early signs of Hypermobile Ehlers Danlos, for example, manifest in children being quite fidgety and uncomfortable in their bodies. So looking back, I can make some sense of that, but it didn't cause me big issues and really it was probably until the age - and I was quite sporty, actually. I played football - soccer over here. I would run, jump, etcetera, down at the running track and I guess I was fairly muscular at age 15. And, again, looking back I realized that being muscular - and often it's more the case with men - I suppose it gives better protection against the laxity and instability of the joints that come with Hypermobile Ehlers Danlos that a lot of POTS people suffer with. But then things I suppose the most major issues started for me at about age 17. I start or 16, 17. I had a growth spurt from 16 to 17 where I grew a couple of inches. Again, I believe there can be some links with that. And I started to get quite intense palpitations - chest palpitations - really did feel as if the heart was just, you know, gonna jump out of my chest at times. That would make me anxious I guess. Going outside I started to have sensations of unsteadiness, issues with my balance. And that was quite worrying at the time, and I didn't really know who to talk to or how to raise it with anybody. And in fact, the first time I went to a GP to talk about my balance issues and the palpitations was probably about age 20, when I was told by my GP - which is a general practice doctor in the UK - I was told in no uncertain terms that we all get busy sometimes and I should just get on with it. So that was childhood into my teen years and had a bit of struggle at my university days into my early 20s because it was becoming quite a problem, the balance issues then. And I think that's about the time that I - looking back, I now realized what it was - I started self-medicating with alcohol. I found ironically that - and this features a lot with people with vestibular migraine, I'm not so much sure how much with POTS - but when you become a bit intoxicated, you can ironically start to feel better balanced.

06:53 Jill (Host): Oh, interesting.

06:55 Henry (Guest): There's a knock on afterwards that when you have the, um, because you've triggered your migraine, you’re really going to suffer afterwards, and I did throughout much of my adult life. So yeah, that's my recollections of early teens into early 20s, yeah.

07:08 Jill (Host): Well, I was just doing a little bit of math here, so if you are in your mid 50s and you started having symptoms when you were 17, that that puts you having symptoms well before POTS had a name and I'm sure before it had any awareness whatsoever. So maybe we can dig into that. That sounds rough, and I know from my own experience, it was tough having this before Google and before there were patient advocacy groups and information online. And, I'm just guessing - did you just feel so alone? Because I'm guessing you probably didn't know anybody else, right, who had this kind of thing and there was no Internet information, there was no nothing?

07:57 Henry (Guest): No, absolutely. You know, in the house I remember we had a, uh, it's quite common, you know to have an A-Z medical book where you could look up ailments, but that they would have, as you say, there would have been nothing anything linked to POTS. So yeah, very isolated I think. Probably as a also as a boy, a young boy, I think it's, you know was not encouraged to share emotions as readily and easily as young ladies, perhaps. So yeah, I did - I did very much, and I think that sense of isolation and, um, with my health issues, which progressed throughout the decades, we will hear more of that, but that, that stayed with me till fairly recently, in fact. Yeah.

08:45 Jill (Host): So I'm a little bit in the same boat as you, having symptoms before there was any awareness or any Internet stuff, and I know that what I thought was going on at times - because I did have some grandparents with mental health issues - I thought for sure, "Oh great, I got it too. This is me being crazy." And that took such a toll on myself esteem. Can I just ask what did you think was going on with you when you had no explanation?

09:17 Henry (Guest): Of course. Yes, I think that's right. I mean it's - you do, you start to think you're aware you're different. You know, I remember many occasions looking off the top deck of a bus, for example, trying to spot people that might be struggling in the way I was, you know, leaning against walls and posts. I never fainted, but I've come close and presyncope, you know, near blackouts is my thing. And I used to look out, I thought, it can't just be me. I thought there must be other people in this same boat. Then I guess I became aware of people who were agoraphobic, and I, I could sort of start to relate to how that could happen. Uh, start getting fearful of going out, you know? But yeah, I mean, I mean fears of craziness, I guess. You know, I mean I - as I'll tell later - I now compete some things with parents and cousins, other family members, where there are some presyncope and syncope events with a male relative. My father with fast high heart rate and mother with migraines. So, um, but yes, I share your thoughts there very much kind of isolation. Trying to put a label on it after seeing my doctor at that young age. You can imagine after that point that put me off any further discussion with medical people at that point.

10:39 Jil (Host): Right.

10:40 Henry (Guest): Yeah, it knocked myself confidence massively, yeah.

10:42 Jill (Host): Oh, me too. I wish we had known each other. Gosh. So then can you tell us about your 20s? What did they look like?

10:51 Henry (Guest): Yep, 20s were - they were fun, overall. I made a lot of friends when I moved away to university. I did spend a year outside of London in a in a smaller city. Had a lot of friends. I guess I carried on however with this thing with alcohol and using alcohol and, looking back, it was very accepted actually in in in society at that time. I'm in my family, all of the older males, it was alcohol and cigarettes and things. So, I started smoking as well. So unfortunately, after at age of about 20 when I was running for the university, I was representing them in cross country, I guess my health went downhill a bit. I was a typical young man in many respects, just kind of exploring and, you know, not acting as safely as I should really. You know, you think you're invincible. But I started to become aware, probably for the first time, this fatigue and extreme tiredness and I've analyzed this to myself over the years and the best way I can describe the levels of fatigue I have, because of course everybody will say, "Well, I get tired. I get fatigued. I even get exhausted." Of course they do, as many people suffer presyncope and, you know, blood rush when they get up too quickly. But I would describe my fatigue and tiredness to medical people and anyone interested as I'd be out in the street, and I would literally get to the point where I could quite happily drop on the pavement and sleep there and then.

12:27 Jill (Host): Wow!

12:29 Henry (Guest): It's an intense level of exhaustion. So, I started to notice that a lot. And I also know, apart from not looking after my POTS, I was probably in an almost constant state with my vestibular migraines, which often appear with no headache, incidentally, so they're very hard to diagnose. There are other aura symptoms and blindness in the eyes and things that I suffered later on, but I was - I was in a constant state of triggering with alcohol and poor sleep this chronic migraine condition, which would have been exacerbating the POTS. And of course, all of it exacerbating my fatigue and exhaustion. So again, with those conditions once many years later I had it explained to me, I will talk about vestibular migraine a little here, if that's appropriate.

13:22 Jill (Host): Yeah, I was actually going to ask because especially if they can happen without a headache, I'm wondering what, what is it?

13:29 Henry (Guest): It's - and I, under one of the leading POTS UK specialists, by the way, who assures me that they're finding it very commonly with POTS patients, and I think it's probably going quite undetected a lot. So vestibular migraine balance disorder is another description for it. So, vestibular is linked to our vestibular system, which is linked to the ears. Everybody has an idea that the ears are involved in the balance somehow. So we have our eyes that are one of the inputs to keep us upright. We have our vestibular system with the ears, and we have our proprioception which is all the body parts that relay messages through the nerves up to the brain. With vestibular migraine, which will be triggered from by many of the common migraine triggers - so certain foods, aged cheeses, salami, sausages, any food that takes a long time to prepare, if you like. Not fresh. Chocolate has always been cited as one, although they're less sure. Coffee, caffeine can be a big trigger. Significant changes in barometric pressure or a major trigger for me, whether it's the temperature going up quickly or down quickly. It's not just about rain, you know. Stress, poor sleep, lots of things. And bright lights, you can become very triggered. So, the best way it was described to me by the neurotologist, who is a neurologist who specializes in balance, was that - for the listeners here, I'm holding up a bottle for Jill to see - if you have migraine, the idea is to keep your trigger threshold low in the bottle, so the bottle quite empty. If you're not doing that, if you're not aware of your triggers, or you're not avoiding them, the bottle fills to the point where the bottle becomes full. And then what happens? The slightest of triggers - some fluorescent lights in a supermarket or in a in an office, eye visual stimuli environments with cars and people moving in a shopping mall, as you guys call them, the slightest of triggers will then cause the bottle to overflow and you can end up in an almost continuous state of migraine, for some people. And it's often presents vestibular migraine as silent migraine - silent migraine being a type that doesn't present with head pain. So there's a lot of issues here. It's just as much neglected and under diagnosed, I'm sure, as POTS is, and the two have some interplay because we're talking about, you know, fast heart rate, etcetera, stress. The occasional good day where my balance felt OK was usually the day before a migraine, which I think they call a predrome. There are different stages of migraine. And ironically, in the build up to a migraine, the body’s kind of setting itself for fight, you know, fight or flight, and you can have a day of feeling quite euphoric and then the downward spiral comes. And when the balance goes, it's awful. You get senses of derealization, depersonalization. You feel not connected to your environment. You feel as if you're walking on a boat and you have very poor sense of where your feet are in space. Now, this can also happen with Ehlers Danlos - can affect proprioception. It can happen with the POTS, of course. If you're having a POTS episode, as I did just tonight, going for a walk to the park. I registered heart rate of 140 beats for quite a while, just walking slowly. So I realize I had multiple inputs, now looking back, that were affecting my balance, and it's no wonder I was feeling so disconnected a lot of the time. Plus, my most recent diagnosis of small fiber peripheral neuropathy, which again, they're finding a lot with POTS. I can see you you're shaking in agreement, Jill, you've heard this, yeah. And again, small fiber peripheral neuropathy can affect the balance and the body awareness of where the limbs are in space. So, a lot of challenges that took - have taken a lot of work to try and address in my life. But yeah, I just wanted to throw in there about vestibular migraine for people to understand that migraine is not headache. They are not the same thing. Headache is merely one of many symptoms of migraine.

17:50 Jill (Host): So, this cluster of comorbidities that tends to happen along with POTS really seems like it's just growing and growing. I mean, I remember in the beginning they talked about the triad, and it was POTS, mast cell activation disorder, and Ehlers Danlos Syndrome. Then it was the pentad where I think they added in - I think it was autoimmunity and gastroparesis. And now there are so many new things, and it just keeps growing. But I thank you for talking about this because I am assuming there's some people out there taking notes, and I think you were mentioning the high histamine foods that maybe our issues. So if somebody is listening to you and they're saying, "Oh my gosh, that sounds like me," they could try cutting back on high histamine foods, it sounds like, and see if that helps? Yeah?

18:39 Henry (Guest): Absolutely yes. I mean, that was - I was tested for mast cell formally to see if I had what we commonly - the word here I hear used is trifecta - with, uh, Ehlers Danos, POTS, and mast cell. So at the particular time I was already being treated for my allergies that had been proven, so I tested negative in the formal test for mast cell. However, the consultant treated me as if I had mast cell. And obviously, I'd gone to a specialist who knew about mast cell because it's probably the same in the States - it's very much overlooked here. It's very much downplayed and actually not believed as a sort of proper diagnosis, if you like. So I have – you're right, I have IGE-mediated allergy. I have histamine intolerance. Again, this is all linked to migraine as well as allergy. I have dust allergy, mold, and grass pollen. Now, I remember my POTS consultant telling me where some of the links can kick in. So with POTS and the allergy and the mast cell, even if you don't have a formal mast cell diagnosis, you know, there may be things like I used to get rashes on certain parts of my body. I used to eat strawberries and I'd come out bright red, like what they call a mallow rash on my sides of the nose, but it wasn't lupus. I was tested for that. So, yes, the link I was told was that if you can get the allergy under control and the histamine released, it can lessen the palpitations for example. And then I started to understand this link of allergy and POTS, for example. Heart rate. You know, if somebody has extreme allergy and it's anaphylaxis, for example, one of the things that's going to be happening is the heart will be going crazy, if you like, yeah? So it's no wonder that somebody that has POTS, if they're not able to control their allergy well or their mast cell issues, you know, it's going to kick in with the tachycardia issues and just exacerbate things. That's my understanding and that's how I started to understand some of the links and crossovers, yeah.

20:50 Jill (Host): So, with all of this going on, how did you get through university, and do you work now? I mean, this makes it sound like it would be tough to be very functional. So what happened then?

21:04 Henry (Guest): Yeah, I continued to - I developed a positive spin, we'll call them coping strategies, but I think it was more things like avoidance behaviors, let's say. Looking back, I got a reputation with my friends, for example, that I would usually see if we could meet somewhere close to where I live, for example, OK, which wasn't too difficult because I lived in a more central location than most friends. So they would come in to, you know, to my local bar or whatever. What else? I would on bad days, on the days if I you know partied one night with friends, you wouldn't see me for the weekend. I would be so knocked out with it and I realized what I was doing was triggering a lot of my conditions. And then it was up for work on Monday. My sleep had been disrupted and I would spend half the week getting to a point Wednesday where I started to feel better maybe. Suddenly it's Friday and the same cycle again. So there was, there was a lot of that going on. I started to notice things like I would get anxious crossing roads, I'll give us an example. And I couldn't work out why particularly roads were an issue for me. And I'll fast forward a little bit into my early 50s, recent years, when I found out about the diagnosis of vestibular migraine and POTS, for example. But this is vestibular migraine. What would happen? I became very vision dependent to keep me upright. With vestibular migraines in the background often, the proprioception issues, I've also got some muscular skeletal damage from injuries as well that I'll talk about some point. My brain became very reliant on my eyes to keep me upright, so I would walk literally with my eyes on the floor in front of me. And if I lifted them, we were in trouble. So, what would happen crossing a road, you you've gotta move, you gotta look for traffic while you're walking. So, I would step into a road, look for traffic, and I would nearly fall over, if that makes sense. And this could be why a lot of people seem to struggle in shopping malls, for example. There's a lot of movement.

23:15 Jill (Host): I have wondered about this for so long. [Laughs] Keep talking, keep talking!

23:20 Henry (Guest): So it's - it is that. So, you're walking into a high visual stimuli environment, OK? So you already overloaded, overworked eyesight is suddenly asked to do even more, and it just says, "Enough!" And you’re suddenly triggered into a very bad reaction that can include panic and anxiety, at this point. Your balance and confidence moving can go. You can start to feel nausea and there are a lot of things you can do to get out of that. So I used to avoid going into shops, it was that bad, and I know many who do in the community. But thankfully, there are things you can do, but - so it's the eyesight becoming overtaxed, and I did a year of daily vestibular rehabilitation exercise to retrain my brain. And I remember a day after about a year of doing these exercises, walking along a busy shopping street in London, and realizing that my eyes were on the horizon. I had a little moment, a little epiphany moment. I realized that I was doing it now, I wasn't dependent on my eyes looking down. And lots of problems with neck aches and things like that because of the looking down. The brain with those vestibular migraine flares can also trigger pain in the neck, what they call paper coat hanger pain. The brain is trying to immobilize and say, "Look, I don't know what you're doing here, mister, but you gotta stop moving 'cause I have no trust in the messages I'm getting about where you are in space at the moment," yeah?

24:51 Jill (Host): That's another example of something that I feel like I hear all the time from patients is how hard patients sometimes have to work to achieve something that other people would never even think about. So, what I'm hearing is that you worked daily for a year so that you could walk down a street.

25:12 Henry (Guest): Yes, I did. I heard recently on a webinar for Ehlers Danlos. Um, they were talking about an area that I've become interested in neuroplasticity and neural pathways and things, and apparently the presenter was saying that it's actually an urban myth that it takes 21 days to retrain the brain with a certain pattern of behavior. And they're now saying that it takes something more like, I think it was 64 or 65 days. However, remember that my condition and a lot of us who would have it would have been undiagnosed for many years, you know, 30 years plus, in my case. When you think how long it takes to get to that point, how many avoidance behaviors, how many harmful messages to ourselves really, that start to limit what we can do, it's not something that's going to be fixed overnight. And I hear people, again, I seem to be talking about vestibular migraine a lot, but there will be parallels with POTS. You know, with vestibular migraine, people ask, "Which pill did you take that took the dizziness away?" And I say, "Well, there there's no pill, there's no pill." The medication, as it was explained to me very well, is like a sticking plaster over a wound - the wound being in the case of vestibular migraine an irritated brainstem that becomes very sensitive to migraine triggers. So the medication becomes a plast-- sticking plaster. And the idea is that you have to do things yourself. You have to invest in new behaviors, learning new behaviors, perhaps some guided exercise with an appropriate therapist, be that mental health or physical health therapist, you know. And it will take time and as we all know, with our trifecta plus conditions, there are going to be setbacks and bad days and that has to be factored in. But I can understand how people get to the point of wanting to give up and staying inside and not wanting to move anymore and I instinctively knew before my diagnosis when things got very bad in my 40s just jumping ahead a bit, I instinctively knew I had to keep moving. I would go out at night and walk when the streets were empty. I realized that I was less affected with my balance - there were less lights and people and things, you know. But the 20s, as you asked me about, and my 30s - my 30s were the next time I went to a doctor, by the way, to say look, "I came in ten years ago to see you guys. I was struggling badly with my balance and my palpitations etcetera, my fatigue" - so many symptoms you you can never get them across in a 12 minute appointment that we have here in the UK, you know - we'll all be familiar with this. And again they sent me for tests for - I think I had a brain scan. I think I had some tests for my hearing and then it was pretty much concluded that they couldn't see what was causing my balance issues. I was very much picking up again that this was maybe some form of anxiety or panic that I was living with. And then it was over a decade again before things really reached a bad point for me and I had no choice that I had to fight for some of the answers and diagnosis. So you know well, I know you're looking for a sort of time continuum here, so from my late teens through my 20s into my 30s and into my 40s, I was coping, I was working. I mean, looking back I'm quite amazed at the, you know, the small number of sick days that I had from work, for example, but I would on a day when I was triggered and feeling presyncope and balance issues and exhaustion, I would start to get a taxi into work or a taxi back home, or I would be on a street and I'd find a small corner to go and sit in 'cause I was feeling so bad and very much suffering in silence. I wrote an article for the Migraine Trust, which is one of the big advocacy groups here in the UK, and it was about vestibular migraine. And as I've said, they often appear as silent migraines with no head pain, and the title of the article that I wrote about myself was called "Suffering in Silence" and I think that really resonates with me. You asked me about how I felt about the conditions and that that's looking back what I was doing, yeah.

29:31 Jill (Host): So when you did finally get a diagnosis, did that feel kind of like a weight was lifted?

29:38 Henry (Guest): Absolutely, absolutely. And the way it came - so after that episode in the 30s where again they couldn't find out any physical causes for my balance issues, I continued with my, you know, avoidance behaviors, etcetera, using alcohol 'cause it, you know, momentarily I'd feel wonderful and could walk straight, weekends in bed recovering from all this this bad living, you know, and feeling a lot of exhaustion, it was only in my mid 40s - mid to late 40s - and by the way, in between this I was starting to get muscular skeletal issues. So in my late 20s I had to have my first knee surgery for an Achilles cruciate ligament tear. I had a first lumbar surgery in my late 30s as well. But it was my mid 40s that my body started to break down quite badly. I did have a number of life, significant life stressors at the time, which is often heard about with the vestibular migraine and I think with the other conditions that we have when stress is bad for us all and when it gets too overwhelming. So all of this was ramping up a lot of these symptoms and behaviors that I've already mentioned to you. My last job I remember was five years ago when I last worked, I was I was an administrator in education, by the way, in art education. So very interesting flourishing environment and not lots of things going on, but by this time I was working in an office. I would go down to the pool at work and swim at lunchtime. But things got so bad I would end up at lunchtime just going down and standing in the shower and holding onto the wall for balance. I started to get some blinding ocular migraines. You can have different types of migraine - one person can experience different types. And these ocular ones, and the symptoms first time especially, can be very frightening because they they're very similar symptoms to a stroke apparently.

31:42 Jill (Host): Oh boy.

31:43 Henry (Guest): Yeah, you lose your vision and it would be as if, you know when you're underwater and you're trying to look, and it's very, you know, hazy - that would happen and you just feel rotten. And this started to happen more and more regularly at work from the screens, you know. I was getting a lot of issues there. I would have a sip of water and I would bloat. I started to get a very bad trigger pain in my scapular thoracic spine area or cervical area. So what was happening? I would keyboard. I would take over-the- counter pain medication when it hurt, and I would carry on keyboarding. And I went through this daily over and over. I realized later when I became more familiar with migraine that I was actually over medicating. Migraineurs have very limited amounts of pain meds that we should be having before that starts to become a trigger for the migraine itself. So, I was in these vicious circles and, yeah, I just couldn't balance. I couldn’t - I stopped going out, actually, for periods. I thought I got to leave this job. I went on a holiday I thought I need a rest. The holiday was a nightmare. It was just two weeks of not balancing and feeling I'm going to faint a lot. Also more lumbar back issues, lot of body issues were happening. I went away to Poland around this time. I have Polish family, by the way, and I went in as a private patient for a few days to a hospital where they had all sort of specialists. And I got, for the first time, because I didn't feel I was getting any help from my doctors in the UK. The very worst experience was 'cause I was going in a lot at this time, saying you know I've got issues with this, with that, with the other, and I remember one locum who was just visiting and she looked and she seen she'd seen how often I'd been in. You know, it was cry for help really at this point from me. And she said, "Look, if you don't stop coming in, we'll have to send you to see a psychiatrist." And I said to her, "Well, I'll very happily see psychiatrist and go through some talking therapy, but I believe there are some underlying health issues." I was adamant at this point, I couldn't believe that this was all coincidental. And yeah, I then started to become my own health advocate, I guess. Thanks to a lot of the people in the social media, Facebook groups, etcetera, the big message I got was to start advocating for yourself, don't trust that every guy in a white coat or with doctor and letters before and after his name is going to necessarily be in a position to work in your best interest. So I got diagnosed with vestibular migraine. Well, I diagnosed myself, interestingly enough. I had some uh meal with, and I'd kind of given up on any answers at this point. I didn't know what was up. I, well, the Polish doctors were very good, but they didn't have the specialists that were needed for POTS, Ehlers Danlos, etcetera. It was a relatively small town I was in. However, I did bring back a stack of results to my GP, put them on the desk, and suddenly we realized I had allergies that needed treating. I had issues with my spine that needed working on. I had issues with gastroparesis. So that was the beginning. That was me feeling empowered by going away fortunate to have had the money to do that and bringing some answers back to my doctors and saying, "Look, I'm not going to go away. I need some help."

35:21 Jill (Host): Wow. Wow! And that continues the theme that we keep hearing of people who get the diagnosis and get the help had to work pretty hard for it, which makes you worry about all those people who maybe didn't have the means to do that. I wanted to make sure that, if you want to, that we move on. You have such a tough story and tough, not only in in how many symptoms you had, but just that it went on for so long. And when I think about the day-in day-out, week-in, week-out, sitting at work, you know, for thousands and thousands of days, that's so tough. But the first thing you said to me before we started recording was that you wanted to make sure you had time to speak about the positives and some things that you're grateful for. And I'm excited to hear this because I'm thinking, "Wow you've kind of been through hell."

36:15 Henry (Guest): There are many positives. So after I had left work and I fortunately was in a position to manage to be financially independent for a period of time, I also became a carer for my mother and – my elderly mother. So I started doing things like gym, for example. I remember the first day going, sitting on a rowing machine, you know, few inches off the floor and feeling dizzy and off balance and almost vertigo. But I started to push through this gym stuff. But what was happening, I was starting to feel faint in the gym. I would go - POTS people will know or should know that the blood has trouble pumping up to the heart and the head when we stand up sometimes too quickly. I was trying to do things like push weights over my head, which is just a disaster, so I was having a lot of presyncope near blackouts in the gym. Nobody I spoke to: doctors, GP, trainers, could understand what it was. Was it electrolytes, was it salt? Lacking salt has a link, of course. And only when I got the POTS diagnosis did that make sense. So I started to go to conferences. I went to - I've been and continue to take part in annual, I attend Stars is an organization that runs an annual event which has been virtual now since the pandemic, and I met my consultant there. I went to Ehlers Danlos conference in Belgium, when I felt well enough. And I met a wonderful movement coach called Jeannie Di Bon and she is becoming ever increasingly popular in hypermobile, POTS, Ehlers Danlos - our community. She gets it and she really has some good ways to treat and you can join her virtually. She now has thousands of followers there. So I realized that I was further breaking my body down by trying to do too much of the wrong exercise and movement - Pilates as well. I'm finding people who understand our conditions. So Pilates teachers with Ehlers Danlos, for example. Again, too many things were breaking down 'cause I was doing the wrong movement and exercise. So I'd really urge people to be careful what exercise they're doing and with who. Another big breakthrough, and I really recommend this to people, was a doctor that I found that had the trifecta herself - Dr. Kate Barnes in the UK - telling me that I could really do with working on my mental health. So I started to do some hypnotherapy sessions with her, and she was very mindful of the conditions, having them herself, the health conditions. And that became a stepping stone for me to learn to be a meditator. For three years I've been meditating twice a day. It began with two 20 minute sessions a day. Now it's two half an hour sessions. I've become an advanced Vedic meditator. I learned it with a group which for me worked very well.

39:12 Jill (Host): How much did it help? What symptoms did that help?

39:15 Henry (Guest): Massively. The claim is - and I'm going to plug them here, they're called the London Meditation Center. They also have New York Meditation Center as well. Jill Lavender - her book is actually being published in the next week - she's one of the two teachers. And what it does is it gets the mind and the body into a de-excited state. You basically sit quietly for half an hour or 20 minutes initially with a silent mantra that you repeat in your head that's given to you by the trainer, the teachers. And a lot of people - I’ll give you an example - people with jet lag, business people, use it because the tests have shown in the claims that I believe to be true that a good Vedic meditation can be as beneficial as the deep sleep cycle of sleep.

40:13 Jill (Host): Really? Wow!

40:15 Henry (Guest): For me, if I have a disturbed night’s, sleep 3-4 hours or something, in the past over those struggling decades I would be finished. Now, after my morning meditation I can get through one of those days. So it's helped a lot and I've done a lot of other relaxation - gong baths and sound baths or another one. I've done something called trauma release exercises that was devised by the US military. I would urge people to have a look at. Many things, I did some authentic movement where you're encouraged to close your eyes and just free move, and it got me out of some cycles of fear with pain and movement. I'm a little back in that cycle now because I've come out of a knee and a bad lumbar injury, so I'm needing some help and I'll be getting it with trying to break this over-bracing in the body and the fear of movement again. And get myself moving because get ourselves moving is critical for our community. I'm convinced of it. And keep moving. Rest on the bad days on the very bad days, but then try and move a little when you can.

41:25 Jill (Host): Wow. So you've been extremely proactive, and it sounds like hunting down all kinds of alternative therapies. And did you have to do a lot of trial and error? Did you have to kiss a lot of frogs for a few of them to turn into Princes?

41:41 Henry (Guest): Yeah, I mean it's funny you say that. It's a bit like our what we go through with medical people, you know. Key thing I'd say with the doctors, by the way, is do your homework, do your research, and find the best person you can for the conditions we have because they're few and far between. Don't assume because they're called a rheumatologist they're going to help you with Ehlers Danlos, for example. And it was the same with the relaxation stuff, of course, you know, that some things I tried that didn't work so well for me. I didn't try yoga 'cause I realized there were too many positional changes that we're going to aggravate the POTS. I did some work with Tai Chi and Chi Gong, which is very similar, and ended up having knee surgery 'cause it was too much pressure on my knee, bending in particular postures for too long. So, absolutely trial and error and some setbacks, but very much try to do the work as we get health anxiety as well as another diagnosis we end up with, 'cause we get so panicked without getting answers for what's happening. So we need things to try and calm this sympathetic nervous system - the fight or flight, the panic, and anything we can do to help ourselves with that, from very little things like taking a tissue with a bit of peppermint oil on. And when you're in the street and you're having a panic or in the shopping mall, just inhale the peppermint oil a bit. Things like that. FL-41 glasses for vestibular migraine, for bright lights, for all of our conditions. FL 41 glasses U.S. companies - TheraSpecs, SomniLight - do these very special glasses that block out harmful rays from artificial lights.

43:16 Jill (Host): Great tips, yeah. Well, I’m so glad that you have found so many things that help you after decades of suffering. OK, so tell us, what are you grateful for?

43:29 Henry (Guest): I'm grateful for doing this interview today, for having the opportunity. Thank you. I'm grateful for all the wonderful people in all the organizations that help people with all of our conditions. I'm grateful I had to move on from being resentful of not being diagnosed for 30 years and feeling that I missed out on a lot of life opportunities as a result. But I've gotta be grateful that I've come at a time when I feel we're getting a lot more exposure and interest. You know, unfortunately, a side effect of long- of COVID, long-COVID, is POTS is now on the radar, as you're probably aware. So I'm aware of having an opportunity and I see interesting that you asked for men to do this interview. I'm seeing a lot more young males come through in the social media groups. I'm feeling less sort of alone in those groups as one of the only men coming forward. And let's not forget, you know, and we're not the typical demographic. I'm certainly not the typical demographic for the trifecta. I've actually got quite a strong build, you know. I'm fairly overweight at the moment, but I do have some fairly big muscles that that have helped me. So, uh, rheumatologist not clued up would certainly not put me in the trifecta group. And I needed specialists to pick that out, and I know that a lot of mothers that I see at the conferences are working hard with their children now. So boys are getting help as well as that very unfortunate community of young ladies that were called hysterical for so long. You know, the Victorian idea of ladies fainting at teenage years and stuff. And so I'm grateful for a lot of those positives, and I I'm really pleased that the younger people can get diagnosed sooner now with all of these conditions and start to get some remedial action that will hopefully stop them having to go through, by the sounds of it, some of the things that you had to experience, Jill, and also myself and those sent that sense of isolation and things. So I think it's not good, never a good time to be ill, but I think it's a good time in terms of what's happening for our community at the moment and I'm grateful for that, yeah.

45:43 Jill (Host): I know that when I was young, I would see all these different patient groups for various illnesses and I really thought nothing of it. You know, oh, there's a cancer group. Oh, there's an MS group. And but now having been through it, I see how important every one of those groups is, because without them people suffer like you did and it breaks my heart that you didn't have somebody at 17 to say, "OK, you've got Ehlers Danlos syndrome, so that means you got to do this stuff. And you've got the migraine, so you gotta do this stuff. And the POTS, so you can do this stuff. I mean, we know how inadequate the treatments are for all of those things. And maybe physically they can only get, you know, a little bit better. But it's the mental stuff - it's the not blaming yourself and what's wondering what's wrong with you and then self-isolating and kind of that vicious cycle.

46:42 Henry (Guest): And it's the two words I wanted to bring these up. Actually: acceptance and validation. And it can be a big struggle for us first on first diagnosis to accept what we've got. You know, especially something like migraine. I, you know, I don't get headaches. How can it be migraine? And I see a lot of people going through that and it must be something else, surely it's not just the headache. And the validation - and you asked me about did the diagnosis help? Absolutely. When I got the first of the diagnosis, vestibular migraine, I was floating and euphoric when I left the office of the neurotologist. I felt a massive weight was lifted and that came again with the POTS and the Ehlers Danlos. And what I would say by the way to everybody, by the way, don't just stop with the first diagnosis. You may get - I realize I'll just quickly get this in, and we're probably all familiar with the Olympic circles, that old emblem, and what I found was any of these specialists you go to, they would almost try to explain, uh, sympathetic empathetic, explain all of your symptoms under the cluster of their condition. It's not necessarily the case. There are a lot of comorbidities and we're getting to know more about those and don't stop looking. Don't just stop at the first diagnosis, 'cause there could be a next thing and the next thing. Obviously, you have to stop at some point, but remain curious and interested, yeah?

48:04 Jill (Host): I think that's a great message. What I'm hearing from you is, keep looking, keep fighting for yourself, and I'm so glad that you did.

48:13 Henry (Guest): Yep, thank you, thank you. And obviously you have as well and I can see that because of the great work you're doing with advocacy here. So, self advocacy is that other important work. Do not be afraid to and certainly if you had a bad experience with a health practitioner, do not be afraid to leave that one. Find a better one and try again.

48:36 Jill (Host): You and I both wish we had learned that a lot sooner, right? [Laughs]

48:40 Henry (Guest): Of course, but it's lovely to be able to leave some footprints for those coming behind us, for sure.

48:47 Jill (Host): Well, that's such a gracious sentiment. Henry, thank you so much for sharing your tough stories and all your wonderful insights with so much openness. We really appreciate it and I'm pretty sure there's somebody out there who is getting spared what you went through because they're hearing some of this. So, thank you, thank you. And hey listeners, remember this is not medical advice. Consult your health care team about what's right for you because we're all so different. But thank you for tuning in. Remember you're not alone and please join us again soon.

49:24 Announcer: You can find us wherever you get your podcasts or on our website, www.standinguptopots.org/podcast and I would add if you have any ideas or topics you'd like to suggest, send them in. You can also engage with us on social media at the handle, @standinguptopots. Thanks for listening and we hope you join us. This show is a production of Standing Up to POTS. © 2021 Standing Up to POTS. All rights reserved.

[Transcriber’s note: if you would like a copy of this transcript or the transcript for any other episode of the POTScast, please email volunteer@standinguptopots.org.]