Since my last post I have been responding to a number of changes in my life.
One of these is that I had a hospital appointment with a Cardiologist and he thinks I probably do have Postural Tachycardia Syndrome (see here for an explanation of PoTS and this post for how I got to this as a likely diagnosis). In the appointment my pulse was 120bpm sitting and 150bpm standing, so I think it was fairly convincing that I have some sort of heart rate issue. I have to have an echocardiogram, 24 hr ECG and Tilt Table test to confirm and rule out other possible problems though.
He started me on beta blockers and within a few hours the volume of a number of symptoms was turned down. This hasn’t been a miracle cure for everything, I do think I also have ME/this is a component of my ME (the overlap is very confusing, see below). I would say now that fatigue actually is my main symptom. Before this the CFS label was frustrating because I felt that I had such range of symptoms and fatigue wasn’t a good summary. I’m also generally confused though because people say fatigue is the main side effect of beta blockers. How would I know if its a side effect? I think it may be a sleepiness rather than exhaustion or tired-but-wired. Please could anyone else on beta blockers describe the specific nature of this side effect fatigue versus ME fatigue versus PoTS fatigue?!
I’ve found this diagnostic process to be emotionally destabilising though, awakening some dormant issues after being ill so long, and I’ve tried to be conscious of reigning in my expectations. When I first watched this video
I was amazed at the symptoms listed and did initially think that PoTS could be a better fit than ME for the symptoms I get (ie an alternative diagnosis). I know people who just have PoTS get frustrated at the lack of a cure but if you’ve had 16 years of ME vagueness it feels reassuringly specific and any treatment is exciting.
How can I tell if I have ME, PoTS or both?
Some of you probably know that a while back I was quizzing people on Twitter about differentiating between PoTS and ME. From anecdotal reports and online reading this is what I have picked up so far (I’m still learning so feel free to clarify):
People with PoTS will have their heart rate increase 30bpm or more from lying to standing, and/or their pulse is 120bpm standing. This is an objective measure and confirmed by the tilt table test.
Both conditions get post exertional fatigue but in ME there is usually a delay eg you don’t feel it until 24-48 hours later. PoTS fatigue tends to be more immediate eg you stand up to answer the phone and feel immediately exhausted.
People who just have PoTS don’t tend to get the random viral symptoms which people with ME have (I get viral symptoms in a random order that come and go which I think indicates that either I have PoTS AND ME or just ME).
However, both conditions can be made worse by actual viruses and are often some sort of post-viral reaction initially. The doctor I saw said that for people who have both it was usually caused by the same virus (eg glandular fever).
Most people with ME have some problems standing but if you have PoTS this would be a main symptom and probably associated with other increased symptoms such as headaches, palpitations, dizziness.
PoTS can cause heavy/concrete legs which comes on suddenly. I think that people with just ME tend to have difficulty walking because they feel weak, like their legs will give way (I get both these experiences).
Or is it the same thing?!
I 4also went onto read recent research papers and found that there is a significant overlap between these conditions, with some experts thinking that there’s a PoTS-ME subgroup and other people thinking that the tilt table could form part of the diagnosis process for ME (not as an exclusion test). It struck me that which diagnosis you get may depend more on the specialism of the doctor you see (I think Julia Newton’s research indicated that 40% of people with just a PoTS diagnosis would also meet CFS criteria). It is definitely an area of interest.
Postural orthostatic tachycardia syndrome is an under-recognized condition in chronic fatigue syndrome http://m.qjmed.oxfordjournals.org/content/101/12/961.long?view=long&pmid=18805903
Dr. Peter Rowe – Is The Physical Examination Normal in CFS? Part 1 | Solve ME/CFS Initiative http://solvecfs.org/guest-blog-dr-peter-rowe-is-the-physical-examination-normal-in-cfs-part-1
Postural tachycardia syndrome is associated with significant symptoms and functional impairment predominantly affecting young women: a UK perspective http://m.bmjopen.bmj.com/content/4/6/e004127.full
Sleep disturbances and autonomic dysfunction in patients with postural orthostatic tachycardia syndrome http://journal.frontiersin.org/Journal/10.3389/fneur.2014.00118/full
Another big change in my life is that we need to move cities for my partner’s work. I will probably write a separate blog about the spoonie problems associated with this, but I realised that this possible PoTS diagnosis (and more importantly treatment to ease my symptoms) completely changed my criteria for finding a house to live in. Before all I cared about was the inside of the house and preferably having no stairs to get stuck on with concrete legs. Now on the beta blockers I can imagine a near-future in which I can go out by myself. I’ve rented a mobility scooter for the week to try to figure out what I can do.