I had some autonomic testing done at UCLH at Queens Square London in August 2024. The aim of the testing was to work out what kind of dysautonomia I have.
It’s been 7 years since I was diagnosed with dysautonomia, and I’ve been without any care for 5 of those years. So I was really excited to access this testing. It could help me and my healthcare team to understand what is driving my dysautonomia and potentially access other treatments.
You can check out my experience of these tests in my Instagram reels.
Waiting for the results
I’ve had to wait almost 5 months since I went into London for the testing to find out these results. My dysautonomia has been slowly getting worse during these last few months.
It has been hell having to live in that limbo land for so long. Apart from the uncertainty about how serious my condition might be, my dysautonomia has gotten worse In that time. So while I was waiting for my follow up appointment, I requested my test results. It’s taken a long time and a lot of reading to interpret the results as best as I could. I’ve been reading research papers and using The Dysautonomia Project’s superb book to learn about what each type of test is looking for.
The report on my testing indicated that they’d found problems with my autonomic system. Specifically:
- I do not have primary autonomic failure.
- I do not have POTS.
- I do have the mixed form of autonomically-mediated vasovagal syncope, with chronic orthostatic intolerance.
I’ll cover my interpretation of the individual autonomic tests in detail in another post, but in summary, my understanding is that:
- I have a blunted sympathetic adrenergic response.
- I have Orthostatic intolerance, but not specifically orthostatic hypotension. Orthostatic intolerance means that you don’t have enough blood circulating properly in your body when you are upright. For example there’s not enough blood, or it’s not being pumped hard enough.
- I also seem to have very low amounts of autonomic system ‘signalers’, called catecholamines. While lying down, my plasma adrenaline levels were below range, my dopamine was too low to even measure, and my noradrenaline was in the bottom 11% of the range.
The results are in some ways reassuring. I don’t have one of the more serious manifestations of dysautonomia – autonomic failure.
But what does this mean in terms of treatment? What are my next steps?
I had so many questions. What does my consultant believe the underlying cause of my dysautonomia to be? Can we treat the underlying cause? And can I add in another dysautonomia drug treatment to my current regime?
The follow-up phone call
I’ve felt very disappointed about the follow-up appointment to my autonomic testing. The telephone appointment that I finally had wasn’t run by the consultant who ordered the testing. It was run by an autonomic nurse who didn’t seem to be familiar with my case.
It’s so important to be familiar with a patient’s case. In order to understand what the future holds for me, and to access any available treatments, my healthcare team and I need to understand the probable underlying cause for the dysautonomia. I am diagnosed with Hypermobile Spectrum Disorder (HSD) which is a comorbidity of dysautonomia. But I also have multiple sclerosis (MS) which can cause dysautonomia due to nerve damage to the autonomic nervous system. And there is also a 3rd option that might fit my symptom set and history. I could have another autoimmune condition on top of my MS, which is not unusual.
Unfortunately, the nurse was unable to answer any of these questions. It was a very basic call. I was told that I do not have POTS or primary autonomic failure, and that I do have vasovagal syncope. I was told that my blood pressure dropped to 55/29 (!!) on the tilt table, and that this is because of blood pooling into my legs and feet. After relaying the information, I was told about the pathway that I’ve been put onto.
Specifically, before I can access my consultant, I have to:
- Participate in a 2 hr lesson on management of vasovagal syncope, which has a waiting list of over 3 months.
- Implement the management strategies from the lesson.
- Have a follow up appointment with the autonomic nurse, who will then decide whether to request a consultant appointment for me.
So it’s probably going to be a long time before I have the opportunity to talk to my consultant about underlying conditions and treatments, if at all.
I was also told by the nurse on the call that the pre-syncope symptoms that I have even when I am sitting or reclined can’t possibly be dysautonomia, that my dysautonomia can only explain the symptom set when I am standing up. Which is just incorrect. I was surprised to hear this from an autonomic nurse from UCLH. Luckily I know this to be untrue, else I would have been battling those feelings of invalidation and hopelessness for much longer than just the rest of that day.
My Next Steps
I am frustrated, because I have lived with dysautonomia knowingly since 2017 and implemented the standard management strategies and much much more off my own back…which I relayed to my consultant in our first and only appointment. But I do understand that the autonomic department is probably struggling with the amount of patients being referred to them. It’s one of the only specialist places for dysautonomia in the country. And the already creaking waiting lists are probably being swamped as more and more people are diagnosed with Long Covid, which often presents with dysautonomia.
So I understand that they need to put patients through a standardised program to manage the waiting lists. But…it’s so hard.
Once again, I feel like I’m on my own. What to do? I’m going to see whether there’s anything that I can do myself to nail down the most likely driver of my dysautonomia. Are there any other avenues that I can try? Can I come at this from a different angle? Let’s see.