Overlap between vestibular migraine, PPPD, and cardiac dysautonomia such as POTS.
- Dr Kyprianou
- Jun 6
- 7 min read
Dr Surangi Mendis (00:00:00.03)
So do you feel dizzy all the time and nobody can quite explain why? Sometimes those with vestibular disorders don't just have one dizziness condition. There can be an overlap between vestibular migraine, PPPD, POTS, and other forms of dysautonomia.
Dr Katy Kyprianou (00:00:13.23)
That is absolutely correct. And when they do overlap, symptoms can become really persistent, quite confusing. We don't know which one is actually causing the symptoms or everything together. But importantly, that does not mean recovery isn't possible.
Dr Surangi Mendis (00:00:26.02)
So yes, we see a huge overlap between vestibular migraine and PPPD, so that's persistent postural perceptual dizziness. Can you explain, Katie, why these conditions seem to so commonly occur together?
Dr Katy Kyprianou (00:00:39.14)
Yes, so vestibular migraine, in essence, is a disorder where patients exhibit symptoms of dizziness or imbalance or vertigo that can be triggered. And of course, when that happens, then that causes sensibly quite a bit of distress. And that's because the vestibular system is actually linked with direct pathways to the limbic system of the brain, which is the emotional control aspect of the brain. And so that triggers anxiety because the patient feels unsafe because they're dizzy. And then of course, what happens thereafter, the brain becomes quite hypervigilant, guards go up, the brain is constantly alarmed and looking for triggers of vertigo, and that triggers more anxiety, and that eventually leads to PPPD. And so these conditions very often coexist. And that's when myself and yourself, Dr. Mendez, we chat on WhatsApp and I've got another patient, let's join forces because it's important we do that.
Dr Surangi Mendis (00:01:34.25)
Definitely, definitely. And that's the really important part, PPPD is not imagined symptoms. It's not just anxiety. We're definitely not saying that. It's a real functional change, isn't it, in how the brain perceives and processes balance and threat as well.
Dr Katy Kyprianou (00:01:49.16)
And it's really important that the nervous system, once it becomes hypervigilant, the brain is constantly on hyper-alert mode. And that's understandable because dizziness brings imbalance and imbalance brings falls. It could harm. So it's evolutionarily, I imagine, a protective sort of mechanism of the brain to alarm the patient. And so the brain therefore processes simple sensory stimulation as a threat. And those patients, I'm sure you hear this very often, Dr. Mendez, that they say, I walk through the supermarket aisle, there's a lot of noise, there's a lot of movement, and that actually brings my vertigo back.
Dr Surangi Mendis (00:02:31.04)
Yeah, definitely. And I think supermarkets are one of the kind of classical triggers, and the reason for that is that you've got multiple sensory inputs in that particular place. So really bright lights, repeating patterns, sound, lots of movements of people, can be quite noisy, can be specific smells in there as well. And so this is all just a bit too much, this is too much. And understandably, that can become really frightening because dizziness feels threatening, of course. But then by avoiding movement and avoiding busy places completely or frequently body checking, for example, or monitoring symptoms, even if you were doing it subconsciously, unfortunately that can unintentionally keep the cycle going.
Dr Katy Kyprianou (00:03:06.25)
Yes. And everything gets a bit more complex when a patient walks in and also mentions symptoms that could be POTS, which is one type of a cardiac dysautonomia. So POTS stands for Postural Orthostatic Tachycardia Syndrome. And in essence, those patients get symptoms as soon as they stand up, their heart races, they get headaches, they feel faintish, they become pale, sweaty, pallid, cold extremities sometimes. And as you can see, I've mentioned symptoms such as fainting, which suggests that there is imbalance there and the headache. And so then it becomes complicated. Are these symptoms from PoTS, or is it vestibular migraine, or is it PPPD? And then it gets really complex when all three come together, and that's when we join forces. And it's very important, I'm sure you agree, to treat them at the same time. And if you suspect it, then maybe definitely reach out to a specialist to put that label there, and then even be proactive. We were just talking earlier, isn't it, Surangi, about if, let's say, your colleague GP suspects POTS, just start some sort of conservative treatment. I'll let you carry on with it.
Dr Surangi Mendis (00:04:13.06)
Yeah, I think we were talking about how we've both recently attended the POTS masterclass, which was incredibly useful. Thank you very much for POTS UK for organising that. And we've understood that, you know, there are very few specialists in this area across the UK. And what we don't want is for people to be sitting and waiting and waiting and waiting for input that can take, unfortunately, many, many months. And the message that we both, I think, took from that is that it's totally okay to start conservative treatment, to use general measures, you know, increasing salt intake. You know, I'll direct anyone listening to this to the POTS UK website where they've got a wealth of information on there about safe kind of ways in which, you know, sensible things that can be done to manage initially. But yes, but I think the kind of takeaway here is that now you've got multiple systems contributing to dizziness simultaneously. And yes, it can be hard to pick this apart, but there are various people who are definitely interested in trying to help you to do that. Yes. If the autonomic system is unstable from untreated PoTS, it can be very difficult, can't it, Dr. Kyprianou, for the brain to fully settle the vestibular system, I think.
Dr Katy Kyprianou (00:05:19.26)
Yes, exactly. And if somebody is constantly physiologically stressed from high pulse, those adrenaline surges, dehydration, that sort of intolerance to standing up, the nervous system just goes in such a heightened state and it just worries and it scares those individuals thinking, gosh, this is my life now. And it's probably coincidence. I'm sure you agree, Dr. Mendez, but all the mutual patients you and I have are either doing their GCSEs, so it really comes at a very bad timing, or they're at uni or they're in their 30s and actually they've got children to look after. And so it really debilitates them. And the more overwhelmed they get, again, understandably, the worse it becomes. And so that's the reason we often try to sort of work at acting on all three conditions. And I often tell my patients when I treat them for any type of migraine, it's a recipe. Maybe let's try a bit of this and let's try a bit of that and see how we can adjust the doses. But knowing that a patient has vestibular migraine and PPPD and PoTS is important. And we have many mutual patients where we've tried to start, for example, venlafaxine, which is originally an anxiolytic medicine, but actually a very good migraine preventer.
But actually it made their POTS worse. And it's just, it's very important knowing all three so that we, we try treatments that actually complement all three conditions rather than improve one and worsen the other.
Dr Surangi Mendis (00:06:44.14)
Absolutely, absolutely. It's about acknowledging the presence of all three of these arms. And in, in our experience, I know that you will agree with this, it's not just three arms. There might be many more. There might be an overlap with neurodivergence, hypermobility. You know, we see particular profiles and actually actively we try and screen for these other things because this is where the perceived— well, it is complex, this is complex management, but with an MDT, and I'm proud, I think you are as well, to say that we work with NMC where we have a wealth of different clinicians, you know, working in different areas where we communicate well with each other and share expertise. It is the main messages that you really do need an MDT to effectively manage these symptoms. I think one thing that I would say is that when we do see people improve, and for example, in my NHS practice, when we discharge patients, I always ask the one thing before discharging, and I always say, well, what actually worked for you? And the thing that I hear commonly is that it was multiple things. It wasn't one single thing. It was a little bit of the input from the psychologist. It was a little bit of input from the physiotherapist. It was good migraine management. It was a combination and self-belief as well. I think probably the one thing that you and I really— the reason why we wanted to kind of make this video is to say that, you know, that part you and I have no control over that. But there is a wealth of information out there. There are people who are, you know, and charities and organisations that are trying very, very hard to support this and recognise and gain political and financial traction to try and, you know, because there's no pathway, there's no guideline, there is no— with all of our disorders, you know, that there is an urgent need for all of this. And, but we just want to say that we can see you, we know we can see you trying to, you know, navigate, as you say, exams, life, motherhood, you know, all these things. And we are really keen to try our best to try and help, you know, people with these conditions.
Dr Katy Kyprianou (00:08:41.07)
Yes, it's— I always tell my patients the nervous system needs to recalibrate, and that does take a bit of time. But like you say, the importance of communicating amongst ourselves as clinicians, and also, like you say, educating the patient so that they understand why this is happening. We know many celebrities that have vestibular migraine. I think the first person that comes to mind is, of course, Janet Jackson, who is a very famous singer. And we've got many Olympians here in the UK with PoTS. So it can improve and it can be managed.
Dr Surangi Mendis (00:09:12.07)
Definitely. I think that's the biggest takeaway, isn't it? That this persistent dizziness doesn't mean permanent change. It can take a very long time, but functional improvement can be seen. And yeah, I think, like you say, understanding the overlap is often this first step towards recovery.
Dr Katy Kyprianou (00:09:27.27)
Absolutely, yes.
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