I am much more knowledgeable about dysautomnia than I was when I last pursued a diagnosis in 2011. I’ve been wanting to pursue it for a long time but screening for gallbladder surgery has brought things to a head. My pre-op and subsequent ECG showed sinus tachycardia (and my blood pressure was a concern too). I was worried, knowing that tachycardia is a norm for me, but being someone who is suggesting why that might be rather than having a diagnosis.
I raised concerns with the surgeon and asked my GP for a cardiology referral in an attempt to hurry things along. My surgeon opted to wait for an opinion, or rather an OK from the cardiologist, suspending me from the surgery waiting list.
Stress and anxiety now mounting because I knew the chance of landing with a cardiologist who was even familiar with dysautomnia, let alone capable of diagnosis and treatment seemed slim. And then there was the timescale that seeing an NHS cardiologist and waiting for tests and follow up would take. I could see surgery delayed until summer or later meaning I’d pain, nausea and problems for over a year.
I’m so fortunate that a family member, seeing my distress and position, offered to pay for me to pursue a diagnosis, explanation and an OK for my surgeon privately and therefore quickly. I have to say I struggled a lot with the generosity of the offer, the implications of cost and my worth to be invested in. But that’s another post.
Yesterday I saw my selected autonomic specialist in Leicester. We ended up taking about an hour and a quarter of his time, covering my ME history as well as the suspected POTS. He was interested in my home 10 minute standing tests for POTS and kept my prepared info.
He examined me thoroughly and perfromed a 3 minute active stand test.
He suspected I do not have classic POTS but that perhaps I have some mild dysautomnia. He wasn’t unduly worried about the history and stats I was giving him. But certainly there is sinus tachycardia which would benefit from treatment. The ECG showed sinus tachycardia and a weak pulse which strengthened his view that treatment could be beneficial.
He will ask my GP to prescribe Ivabradine, his preferred option, as it slows the heart without the side effect of tiredness that beta-blockers often come with. But as a 2nd option, if the GP is reluctant to prescribe Ivabradine (which is new, off licence and expensive) then he’s prescribed a beta-blocker. He also gave me the choice of Ivabradine privately but at about £60 a month it’s a very expensive option to self fund.
He’s asking for a NHS 24 hour urine collection test to exclude rare adrenal condition via my GP. And a thyroid test would be a good idea.
Once my heart rate is slowed I’ll be back for a private EKG to exclude any underlying physical problems. Then, after a follow up, referred back to the NHS in Leicester for autonomic testing, which may take time with waiting lists. But as he is addressing my immediate concern by writing to my surgeon giving the all clear to operate with his clinical findings, time I can afford.
The best thing was having an hour to talk to the consultant without pressure. It really did take that whole hour (and a bit!) to talk about everything and even then I had to cut short some of the ME stuff and steer him more towards OI stuff. We certainly got a lot out of it, not least being the first doctor to see my tachycardia and actually do something about it, namely treatment and further testing. It felt at times that he was being dismissive of my symptoms and stats, but I think after asking him that it was that he was framing my level of dysautomnia against the spectrum. Sort of reassuring me not to be unduly worried if you like.
He’s not dismissing POTS totally because autonomic testing will show more anyway. My baseline HR was so high to start with (being in the doctors office and a bit anxious) that he felt the test couldn’t show POTS. Like my home tests I was raising less than 30bpm but going over 120bpm, but his opinion was that wasn’t a clear indication as my starting resting HR was so elevated. His opinion was that my BP rising on standing was a normal reaction.
I feel others specialists would interpret my results differently. He is an advocate of the 3 minute stand test, feeling that if an autonomic reaction is going to happen it happens quickly and anything more is something else I suppose. I’m not a huge fan of this approach, but it’s the specialist I’ve got so I have to work with that. And the specialist I’ve got is a huge improvement on the big fat zero I had before. And I am getting treatment which would be the same for POTS anyway so the end result is much the same. Trying to be relaxed and philosophical about it because that’s the reality I have to deal with.