PoTS Self Management Course At NHNN

I recently attended the PoTS Self Management Course as part of my care at the National Hospital for Neurology and Neurosurgery. I thought it might be helpful for me to share my experiences with you all, in case you’re struggling with PoTS and don’t have access to a self management course. The aim of the course was to provide us with the tools we need to manage our PoTS as best as we possibly can.

I had really high expectations for this session. A friend of mine has been on the NHNN PoTS Self Management course. She said it was fantastic and really helpful. I’ve also always had really good experiences from NHNN. They’re one of the top places for neurological conditions in the country and really care about the wellbeing of their patients. I wasn’t sure of the format of the could, only knowing that it would be a group of us in the session rather than a one-on-one, like a standard appointment. I also wasn’t sure what to expect from the venue. The session took place at the 52 Club, which is a pleasure centre used by the NHNN for such courses.

Photo credit: Hana from Hana Rosella

The session started at 1:30pm. The venue was easy to find and accessible for me in my wheelchair. Mum and I got there just before 1pm. The letter I’d received suggested to get there at 1pm if you wanted to mingle with other sufferers before hand. In reality, we were all sat in the leisure centre reception, not sure if we were all there for the same reason, so no one spoke to each other.

The nurses introduced themselves and reassured us that we should feel free to put our feet up on the chairs or lie down on the mats on the floor if we needed to so that we felt comfortable and would able to concentrate. I liked this touch, it showed that they not only understood PoTS, but also how it can feel for someone who needs to do something ‘out of the norm’ because of their health, but might feel uncomfortable doing so incase of being judged. To start off, we were given a a little low-down on what PoTS is. Interestingly, there are people who are not diagnosed with PoTS but ‘a tendency to PoTS’ if their tilt table test results don’t quite reach the increase of 30bpm or over 120bpm after 10 minutes of their posture being changed on the tilt table.

The course itself reminded me of one of my uni lectures. Three of the four nurses ran the course and each took a different section to talk to us about. The first was circulation, then self-management and long term management. There was a break after self management and an opportunity to ask questions at the end.

Interestingly, the course was very much focussed on ‘Joint Hypermobility Syndrome’ and PoTS. I’m not sure why JHS was chosen as the termonology, rather than the umbrella term of ‘Hypermobility syndrome’, but I tried to let this technicality go. After all, there are specialists who believe that Hypermobile Ehlers-Danlos syndrome (previously EDS-HM & EDS-III) are the same thing. I’m not convinced of this as there are non-genetic causes for JHS, but not for EDS. Anyway, I digress! If I didn’t have EDS, I would have been rather annoyed and felt that a fair amount of the information was not relevant to me. It may be that people are split into groups depending on their other co-morbid (commonly found together) conditions. So they may hold an ME and PoTS version of the course with more focus on ME relevant things, for example.

PoTS Self Management Course At NHNN: Circulation

I found circulation the most interesting of the topics and definitely learnt something, though it doesn’t really impact how I manage my condition. I learnt that things called baroreceptors monitor circulation continuously and tell the body to make the changes to blood pressure and heart rate that it needs. These work properly in a person with PoTS, so the problems come when the body tries to put the baroreceptors instructions into practice. So PoTS is an exaggerated ‘normal’ response to the messages from the baroreceptors. It was at this point that the interplay between JHS and PoTS was introduced. We were told that because out collagen is extra stretchy, our blood vessels have difficulty contracting to push the blood back up to our heads, so instead it pools in our feet. This was something I was aware of already in EDS, but raises a question for me in JHS. For those who’s condition is caused by one of the non-genetic reasons, is stretchy blood vessels an issue? For example, if the shape of the ends of the joints are the cause, would the blood vessels still be affected? Does this mean that only people with genetically caused JHS be (more likely) to also have PoTS? These are all just me thinking out loud. I don’t know if we’ll ever have the answers to these questions and it’s unlikely to be in our lifetimes.

I found it interesting and reassuring that in the circulation section we were told that other reasons for symptoms can include ‘reduced or limited mobility’ as well as ‘deconditioning’. When my consultant told me she thought I was deconditioned, I was quite disheartened (partly because the consultant made this assumption without asking me what I do exercise wise!). When my symptoms started, I was very active. As I’m not medically able to drive because of my Basilar type migraine, I walked everywhere. I also did yoga and cycled daily and took part in weekly pole fitness classes. This has only stopped because I’ve come off my medication so Dan and I can try for a baby. It was good to know that the nurses understood the reduction in my activity isn’t because I’ve not worked hard enough, or tried hard enough to stay active. I don’t know whether my initial reaction to the term ‘deconditioned’ is because of some of the typical reactions I’ve had to my health about how loosing weight would help my joints and that I ‘just need to exercise’.

Another thing that I found interesting was that you can experience dissociative symptoms with PoTS. I thought that the nurses were going to go down the ‘making it up’/’doing it to get attention’, which was what I was told when I was misdiagnosed with non-epileptic attack disorder (a type of functional neurological disorder, which is neither ‘made up’ or ‘doing it for attention’). But, in fact, we were reassured by the nurses that these symptoms are very real and that we are not ‘making it up’ or ‘mad’ if we experience them. On checking out the link we were given, neurosymptoms.org it turns out dissociative symptoms these are caused by a problem with the functioning of the nervous system.

PoTS Self Management Course At NHNN: Self Management

For the self management section, we were told about what to do when symptoms start – sit, crouch or squat down, breath calmly to keep the chest from becoming tight which makes it harder to pump blood up to the brain, do calf pumps to help push blood from the legs back up towards the brain and drink water which increases your blood pressure. We were told to do these things immediately to reduce symptoms and stop them escalating. These are thinks I knew already and do as a matter of course, though not always on the onset of symptoms. We were told not to stand still to reduce the amount of blood that can pool in our legs and feet, to avoid raising out arms above our heads and to sit for daily activities, such as brushing hair, cooking dinner and ironing. This surprised me, I would have thought that if I did all my stood up activities sitting, I would become deconditioned. Clearly this isn’t the case! I’ve already asked my GP for a referral to occupational therapy for some aids like a perching stool for the kitchen & a shower stool as these activities are hard or impossible at the moment because of my EDS but it was good to have their recommendation backing this too.

We talked about different triggers for PoTS. Changes in posture are the obvious one, but sleep, heat, time of day, time of the month, food, dehydration, anxiety, pain, medication and infection can also impact on symptoms. I didn’t know sleep could be a factor, the time of day (though I think this is more linked to the activities you do at certain times of the day) or pain. We were advised to raise the head of the bed by 10 degrees as this causes an increase in one of the hormones as you sleep which can reduce symptoms. With my EDS, I’m a little nervous to do this though as I’m concerned it will have a negative effect on my back pain, which could then cause my PoTS to be the same as a result of the pain increase! We were shown some different postures and how good they are for someone with PoTS. I hadn’t thought that sitting with the legs raised would be better than sitting with the legs down (though it makes perfect sense!). I’m going to speak to wheelchair services and see if it’s possible to have a chair where I can raise my legs up if I need to. This will be particularly useful if I’m using my wheelchair on a hot day. I’m also going to get a fan for downstairs before the hotter months kick in to help me stay cool.

PoTS Self Management Course At NHNN: Long Term Self Management

The long term self management was really an extension of the self management section. We were told that occupational therapy can often help manage fatigue, so I’m going to speak to them when I have my appointment to find out if my area are able to put something in place for me. At the moment, I’m using Coke/Pepsi to fight fatigue, which isn’t ideal as the caffeine isn’t great for my PoTS and the amount of sugar won’t be good long term. The nurses suggested keeping a diary to pinpoint things that cause fatigue, prioritising activities and asking for help to manage fatigue, but these are things I already do.

Mood was also discussed and I liked the holistic approach. I’m not sure whether they were getting at mood can affect your PoTS, PoTS can affect your mood or both though.

We were given some guidelines for exercise; to start from where you are and build up gradually, to set realistic targets and to focus on things that will improve leg and core muscle tone. We were advised to avoid things like cross trainers because they are stood up and involve the arms being up and to use sat equipment like a rowing machine (something I can’t do because of how it affects my wrists, elbows and shoulders). When yoga was discussed in this section, the information was a little contradictory, as all the images involved poses with the arms above the head.

We then had the opportunity to ask questions. One man asked how increasing salt helps, as he was concerned that it was not a healthy thing to do. It turns out that our stretchy signs and arteries aren’t affected my salt in the same way as most people. Salt hardens the vein and artery walls, which we were told isn’t problematic in those with a hypermobility syndrome because ours are already too stretchy! However, I’ve since found out that if you have high blood pressure, even with a hypermobility syndrome, this isn’t advisable. I asked about electrolytes, how they can help in a similar way to salt and what they can be found in. I was told about electrolytes by my friend H, who wrote about her experiences of Gastroparesis for me. Because eating food can be difficult for her, one of the nurses at NHNN told her to make sure she gets enough electrolytes and that she can do this by freezing coconut water and letting it dissolve in her mouth when her gastroparesis is flaring up. Information on this would have been really helpful, as I’ve been having difficulty eating for the past 4 months. I’m waiting for an appointment with the Ear, Nose and Throat team, but my GP thinks the problems I’m having are related to my EDS. Unfortunately, the nurse was unable to advise me about electrolytes and just told me that as long as I get enough salt it’s fine. At the time, I didn’t think much of this. After all, the nurse doesn’t know my personal circumstances. But it’s been niggling away at me. The course had a focus of JHS, so why didn’t they anticipate that eating might be problematic for some of us? Gastroparesis is a co-morbid of EDS and a number of people have other gastric problems associated with their EDS. So why didn’t they consider this part of the condition and how it might affect our ability to manage our PoTS? I have the nurses email address now, so I may pop them over an email to explain my situation and ask for some advice to make sure get enough salt/salt equivalent and water (as even this is making me nauseous!).

So while I did learn some interesting things, I already knew a lot of the self management information from my own research. The PoTS Self Management Course definitely wasn’t a bad experience, but it wasn’t as helpful as I’d hoped. I think this course would most benefit someone who doesn’t know a lot about PoTS and hasn’t already taken steps to manage their condition. I don’t think I’ve taken anything away from it that I can put into my routine to improve my symptoms, but it’s good to know that I’m already doing all the right things. The course was compulsory, so at least now it’s done and I can tick the box to say I’ve done it and access other treatment options should they be necessary. I think that courses like this would be very beneficial to a number of people with different conditions just after diagnosis.

Have you been on a self management course for your medical condition? How did you find it? If you haven’t, would you find a self management course beneficial?

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