A Year of Autonomic Testing and A Discovery of POTS

After I was diagnosed with Hypermobile Ehlers-Danlos Syndrome, my Mum and I did quite a bit of research. There were a lot of things that suddenly made sense and one thing that caught our attention was mention of autonomic issues, like dizziness, fatigue, chronic pain, brain fog, problems with heart rate and blood pressure… These were all problems I’ve either struggled with or had investigated in the past so, with the hEDS diagnosis and the help of my GP, we started following that path to see if it yielded any answers.

As you can see, this post has been a long time in the writing. I didn’t want to post anything until I had something to say really, beyond descriptions of the tests, but then it all just went on and on and on. Everything moves so slowly and it’s very draining. I have to hope that things are better for knowing what I’ve learned from all of this but it’s also been a very trying, sometimes traumatic experience.


MARCH 2021

It began with a phone call appointment with a neurologist, a specialist from a neurology unit in London (which I talked about in this post). It wasn’t a fun experience. The call came two hours late, it wasn’t the person it was supposed to be, and then he spent twenty five minutes of the half hour call telling me that there were tests that they could do but that they’d probably be a waste of time. It just left me feeling really confused and upset. He had eventually said he’d write to my GP about doing some tests but after the way he’d been talking, I didn’t feel very hopeful about it all. After he hung up, I didn’t quite have a meltdown – it was like I didn’t have the energy that a full on meltdown requires to happen, like a rocket needing a certain amount of fuel or whatever to launch – but it was close.


MAY 2021

Despite his apparent reluctance, the neurologist did in fact write to my GP and the blood pressure monitoring was arranged. It took forever – I think because of a shortage of the monitors – but the day did eventually arrive (I wrote more about it in this post). I went to the hospital to have the monitor fitted and to get all of my instructions; the whole thing was relatively chill (not my general experience when it comes to the medical field) and the two women who went through it all with me were really great.

It wasn’t too bad. The cuff got very tight so it was hard to forget it was there and just do the day as normal but it was fine. I did find it hard to get to sleep but the squeezing didn’t wake me up, which I was grateful for. My arm did hurt like hell in the morning, like I’d been punched repeatedly; I was convinced my arm would be bruised afterwards but it wasn’t. I couldn’t get the monitor wet so I couldn’t have a shower until after I returned it but since that’s usually when the blood pressure related symptoms present, we faked a shower: I stood for the same amount of time in the bathroom with the shower on (so that the hot, steamy environment was the same as if I were having a shower) and let the monitor take its readings. I felt shaky and dizzy and lightheaded so it should have read as if I really had had a shower.

I got through the rest of the twenty-four hour period and then took it off, to my great, great relief. My arm was sore from the squeezing and the cuff was pinching in various places. I also had that Autism thing where the constant pressure for so long was causing me anxiety, like wearing my retainer for too long. The anxiety had been growing for most of the second day so I was very relieved to be free.


JULY 2021

The second round of monitoring involved a little stick-on patch with sensors over my heart, which had a little monitor that could be attached (and then detached for a shower) to measure my heart rate. I was supposed to wear it for a week and while it wasn’t exactly comfortable and sleeping with it attached wasn’t great, the first few days went smoothly for the most part.

But, after several showers, the patch started to peel off. The sensation of it constantly brushing my skin and the itchiness of the glue (or whatever it is) as it disintegrated was quickly overwhelming and I was regularly finding myself in meltdown territory. It was creating so much anxiety that we got in contact with the people who’d sent it and they said that after roughly four days of readings, it would be fine to take it off, that they would have enough data. Removing it actually really hurt and I think me and my super sensitive skin had some kind of reaction to the adhesive because it kind of looked like I’d been burned where the patch had been for a couple of days after.


AUGUST 2021

Alongside the blood pressure and heart rate monitoring, there were a series of other tests but it was a while before I got the letter to tell me that they’d been scheduled. The first of the two appointments was in August and was a bit of a mixed bag as an experience. Despite the letter from my GP that said I’m autistic and have an anxiety and therefore need to have someone with me for hospital appointments, the receptionist almost didn’t let my Mum come in with me. I was somewhere between walking right back out and having a panic attack (said receptionist actually asked me if I was okay, which I thought was a bit rich) but fortunately it was all sorted out and after a little bit of time to collect myself, the testing went ahead. The doctor for this particular appointment (I don’t think I’ve seen a single doctor more than once through this entire process) was nice and didn’t rush me at all after the somewhat upsetting start.

The testing was fairly straightforward. They wrapped me up in monitors (I’m not going to lie – I kind of loved all of the hand ones for taking my pulse and stuff because it kind of felt like I was having superpowers measured or something, which was much more fun to think about) and then ran me through a series of tests: standing for certain periods of time, breathing exercises (which reminded me a lot of the warm up exercises I used to do during singing lessons), squeezing an inflated pressure cuff (my hypermobile fingers made this one pretty difficult), and so on. There was still the tilt table test to go but I had to come back on a separate day for that one.

Just like with the day of blood pressure monitoring, they didn’t tell me anything about the test results. Once they had all of the data from all of the tests, they’d call me in to discuss it all. I could understand that but it was frustrating when the whole thing was taking so long.


SEPTEMBER 2021

Late September, I was back at the hospital for the tilt table test. I was all wrapped up in the monitors again  and they strapped me (not uncomfortably) to the exam table so that when it moved from horizontal to almost vertical, I wouldn’t slide or fall. Everything was fine while I was lying down and they got all of their readings and then they adjusted the table so that I was almost upright.

It took about twenty five minutes before I started to feel noticeably bad. Like, more than just not great. My hands felt numb and tingly, my legs were shaky, my chest started to hurt and I got very breathless; they let me take my mask off (everyone else was still masked and I’d tested negative before going to the hospital) but I was still breathing too fast, on the way to hyperventilating. While they had an approximate end time for the test, they decided to stop there; presumably they had the information they needed and I was honestly relieved to lie back down for a few minutes. I was breathless for a long time, my head hurt, and I was pretty nauseous. I had to sit for about ten minutes before I felt solid enough to get up and back to the car.

A week later, we were called in by the cardiologist to go over the results. It was a frustrating appointment: my information wasn’t there and we had to wait while the doctor called around and tried to get a hold of it all and then, when he got it, he waffled a lot without really saying anything so getting a clear explanation wasn’t easy. As far as I can tell, my heart rate goes a little haywire when I stand for a long time or exercise too vigorously. The cardiologist diagnosed me with Postural Orthostatic Tachycardia Syndrome and prescribed me Propranolol to help with the symptoms. I’m not sure we’ve managed to get the dosage quite right yet but it is now in the right range and has been helping a bit: I’m less dizzy and breathless although that hasn’t gone away entirely (yet, hopefully).


FEBRUARY 2022

We had been offered more thorough testing at UCLH in London and we figured that it couldn’t hurt to have more information, especially from an institution that apparently has more knowledge and understanding, better resources, and so on. I was in and out of there for two days (ish), doing tests and helping them gather data on whatever weird thing is going on with my autonomic system. It was a lot but I was cautiously optimistic that what we learned would make managing the symptoms easier.

DAY ONE – We had to be there super early, which was a real struggle because the ADHD meds were seriously messing with my sleep, but I did somehow make it on time. Despite my doctor’s letter, the people at the desk and then the nurse didn’t want to let my Mum in with me. I was ready to walk out – I’ve been traumatised enough times by medical personnel that I wasn’t keen to add another tally mark to that particular chart – but Mum managed to talk to them and get them to understand. I was fitted with a blood pressure monitor, like the one from my first test, and gave me a diary to keep for the next twenty-four hours. It was similar to that first test but it required a lot more detail in the recording: I had to do certain activities at certain times, which were recorded by the monitor. It was quite a stressful and exhausting day, with the monitor bleeping continuously. I was incredibly tired (I fell asleep on the sofa more than once) and I struggled to keep up with the activities they wanted me to do – it feels like the ADHD meds have fried my brain somewhat. And then, because my sleep was so messed up, I didn’t get to sleep until after three.

DAY TWO – Waking up and get to the hospital for eight am was excruciating and the fact that I was only about ten minutes late was a miracle. Fortunately, they weren’t completely on time either. The testing that day was all done in the hospital, in one room, with one woman who was, fortunately, really nice. I spent most of the appointment lying on the exam table, hooked up to various monitors and performing different tests. Quite a few were the same as the first tests I did but there were some new ones too, like having my hand wrapped in an ice-pack for what felt like ages (although it wasn’t actually that long but my god, my hand hurt afterwards). She tried to draw blood for additional information but she couldn’t get a vein in either arm (I think that may have been due to the fact that I’d been lying down for a couple of hours at that point and so my blood pressure was weird but I’m not a doctor so what do I know) and that was uncomfortable with nothing to show for it but oh well; it apparently was a bonus if they got it.

The last part was the tilt table test and I wasn’t as affected as I had been the first time I’d gone through it but it still wasn’t pleasant. And after that, I was done. After lying (and then standing) in one position for so long, I was really stiff and my hip and knee joints were so sore that I could barely walk. I was absolutely exhausted. I made it back to where we were staying and fell asleep on the sofa straight away. I woke up for food (I hadn’t been able to eat before the appointment) and then went straight back to sleep. I was utterly drained and it took me a few days to recover fully.

Again, they didn’t have all of the results for me at the end of the appointment: those would go to the team meeting that was within the next two weeks and then they would call me with a plan, another appointment, or whatever. I think it’s safe to say at this point that my expectation of it taking more than two weeks was correct.


MAY 2022

UCLH sent a letter with a brief explanation of their findings and a time for a follow up call where they would explain those findings in more detail and discuss next steps. That took a while to schedule because of other commitments so it didn’t happen until May.

It was a short call but the nurse was really nice and so knowledgeable. She ran through the test results and what they showed and confirmed the diagnosis of Postural Orthostatic Tachycardia Syndrome. She explained the effects of the Propranolol in more detail and said that I would be receiving an invitation to their next online meeting about managing the symptoms of POTS, which will hopefully be helpful. And on top of that, she gave me a few tips to try in the meantime. So it was a good appointment and I’m looking forward to seeing if her tips help and to the meeting, which should be within a couple of months or so.


So now I’m waiting to hear about the online meeting. I haven’t had many good experiences with sessions like these but I’m nothing if not chronically optimistic; maybe this one will be better. But just knowing that POTS is the cause of the symptoms is a step forward. And the Propranolol seems to be helping although I’m not sure that we’ve got the dose quite right yet.

I wanted to write and post more about Borderline Personality Disorder during BPD Awareness Month but I’ve been really struggling with my depression and changing medications and it’s all been a bit too much; I’ve found it hard to write anything at all. I’m still trying and hopefully I’ll have something BPD related up next week, plus I have a few other posts that I’ve started that I hope to finish and post in the not too distant future.

What I Did In Lockdown – Part 2

On the 31st October, it was announced that England would be going into lockdown again on the 5th November so it seemed appropriate to revive this list. Having said that, it hasn’t felt like a lockdown at all with so many business, schools, and activities continuing still open; life seems to have continued as normal, which has felt very stressful. I don’t want to make generalisations though. I know that many people have stuck to the rules and been very careful and I am so grateful to everyone who has done so.

As a disabled person, my life hasn’t changed much with the lockdown. The only significant change has been that I haven’t been able to swim, the only exercise I am currently able to do. I can admit that that has been very frustrating and upsetting but if it helps to keep people safe, then that is something that I’m more than willing to do. I just hope that the sacrifices so many people are making are worth it – most so much bigger than mine – that they outweigh the lack of care that some people have shown. Just my two cents.

Now, to the list…


  • Reimagined one of my old songs for a Masters assignment.
  • Wrote and posted eight blog posts.
  • Spend half a day recording vocals for various songs.
  • Celebrated graduation (online) with my friends who did the course full time even though I’m part time and will graduate next November.
  • Wrote an essay about how important writing is, especially when it comes to mental health and neurodiversity for publication.
  • Had an interview published (x)
  • Recorded the ‘BEHIND THE SONG: Honest’ video.
  • Recorded a video explaining what’s next for the Honest EP.
  • Recorded the reimagination of my old song.
  • Had a massive meltdown on Bonfire Night.
  • Had multiple blogs post about ‘Honest’ (x) (x) (x) (x) (x)
  • Worked on the arrangement and production of the reimagination of my old song.
  • Celebrated Joe Biden winning the presidency (safely, of course).
  • Prepared for the panel I was speaking on about being an autistic student during the pandemic.
  • Worked on the essay for this module of the Masters.
  • PopWrapped posted my personal essay about the importance of writing in my life (x)
  • Received Halsey’s poetry book, ‘I Would Leave Me If I Could.’
  • Watched Halsey’s livestream for the book release.
  • Had a really lovely full EP review (the first one!) posted (x)
  • Edited and finished the music video for ‘Honest’ with Richard.
  • Worked on my reimagination of a cover, another university assignment.
  • Started watching His Dark Materials Series 2.
  • Watched The Queen’s Gambit on Netflix.
  • Did lots of my Christmas shopping.
  • Took Lucy to the vet for her second operation and took care of her afterwards.
  • Posted the ‘BEHIND THE SONG: Honest‘ video.

  • Announced the music video for ‘Honest.’
  • Had several excruciating nerve pain attacks; as of mid-November, I’ve been waiting for a hospital appointment for about eight months and on a schedule of painkillers that aren’t as effective as I’d like.
  • Raged about the unfairness of Taylor Swift being denied the opportunity to buy her Masters yet again.
  • Managed to get my favourite vocals plug-in in a pre-Black Friday sale.
  • Rewatched Noughts + Crosses.
  • Dyed my hair.
  • Wrote a rap…
  • Spoke on a panel at UniversitiesUK’s conference (about how the Covid-19 pandemic is affecting Higher Education), sharing my experience as an autistic student during the pandemic.
  • Watched ‘Tim Minchin: Apart Together, The Album Live!’ and loved so many of his new songs.
  • Uploaded the ‘Honest’ music video to YouTube and posted about it on social media.

  • Wrote and posted a blog post about Agents of Shield, Daisy Johnson, and how much they mean to me.
  • Had multiple production sessions with Richard.
  • Saw a doctor for the pain and blocking of my ear; I was diagnosed with an ear infection and given a medicinal spray to help get rid of it.
  • Had my heart rate and blood pressure checked to find out whether I’m in a position to try a different anxiety medication.
  • Bought Melodyne to help with producing my own demos (thank goodness for Black Friday sales because I could never afford these plug-ins otherwise).
  • Watched folklore: the long pond studio sessions and completely adored it.
  • Found out that I finally have an appointment for the nerve pain I’ve been experiencing and it’s in less than a month.
  • Watched the film, Close, in which Noomi Rapace is just awesome.
  • Spent several days feeling like I was on the edge of a meltdown, alternating between crying and sleeping.
  • Finished watching The Split Series 2 and Nicola Walker’s performance had me in tears multiple times.
  • My EP, Honest, surpassed 30,000 streams on Spotify!
  • Had a really positive response to one of my songs in class that resulted in a really positive conversation about inclusivity and accessibility for neurodivergent students.
  • FaceTimed with my Granny to celebrate her birthday.
  • Had a lovely time watching one of my cats watching a TV programme about puppies; she was absolutely fascinated and kept touching the screen.

I hope that was interesting to read, that you got something out of this post. Hopefully there won’t be cause to revive it again but if there is, I guess we’ll see what I get up to. I hope you’re all staying safe and are coping the best you can. See you in the next post.