It is less than two weeks before I return to work. Just in time, it seems, I have made a discovery which may or may not be related to having ME. I often feel more foggy-headed after standing up, or if I’ve been standing a long time. When I was a medical student with hopes of becoming a surgeon, I used to embarrassingly black out in the operating theatre having stood in the same position for ages holding the laparoscopy camera or a retractor.
Recently, I have been checking my pulse at intervals, in an attempt to identify the activities which push me beyond my anaerobic threshold limit, which for me is 111 beats per minute. My pulse is fine (usually 70-80) when I’m sitting or lying but shoots up to 110-120 when I stand up. If you haven’t heard of the anaerobic threshold or of pacing by monitoring heart rate, please do read this from Bruce Campbell’s excellent website.
I haven’t been to see my doctor about this yet but I’m pretty sure I have a condition called POTS, which stands for postural orthostatic tachycardia syndrome. This basically means that there is an abnormal increase in heart rate when you stand up. Some readers may already be familiar with this condition as it can co-exist with ME, autoimmune conditions such as lupus and various other conditions.
For further information about the symptoms, diagnosis and treatment of POTS, take a look at this from the health site Patient.co.uk.
As a doctor, I was aware of POTS and of the main symptoms. However, I hadn’t realised that neck and shoulder pain, bowel symptoms and general fatigue could also be related. I’m now wondering if POTS and ME are part of the same condition or if they share a common cause. One thing is clear, having POTS and ME makes pacing all the more of a challenge - if just standing up pushes the heart rate above the anaerobic threshold then it is easy to get stuck in a continuous cycle of post-exertional malaise.
Before readers start to think that having POTS dooms sufferers to a lifetime of lying down, there are things you can do to manage the condition. Firstly, I’d advise anyone who thinks they have it to see their GP (yes, I am going to see mine). Feeling lightheaded on standing and having a fast heart rate can be down to other causes too, so it’s important to get the right diagnosis.
If it is POTS, though, my main self-management tip would be drink water – have a large glass before getting out of bed, before standing up and walking about and along with a tea or coffee as these make you pee out more water. You need the water to increase your circulating blood volume. Aim to consume 2 to 3 litres per day. I’ve noticed a slight reduction in my standing pulse since I’ve been doing this and my head feels clearer. (Again, best to consult your own doctor if you have other medical conditions as drinking too much water can be bad for some people).
Another thing that might help is wearing support stockings. Now, as a woman in her thirties, I can fully appreciate that these are not fashionable or sexy. Nevertheless, I dug out my pair of anti-thrombosis surgical stockings I was given in hospital when I had my daughter by caesarean section. I’ve been putting them on every morning and again, I think they are making a difference. My feet used to go a horrid purple colour on standing or sitting but the stockings help to pump the blood back up the legs. (More disclaimers! Your GP can prescribe compression hosiery. If you have narrowed arteries in your lower limbs, tight stockings may not be suitable, so check with your doctor).
My final piece of advice for today is to eat regular, small meals instead of big, heavy meals. Lots of blood flows to the gut after a big, heavy meal, especially with lots of carbohydrate. That means less blood flow elsewhere in the body.
For more advice on managing POTS, check out the POTS UK website.
I’m in the process of trying to come up with creative ways of dealing with POTS at work. I may have to give up standing to greet and say goodbye to patients. I’m also wondering if I can examine patients while sitting down. The main change is going to have to be curbing my habit of forgetting to drink during a surgery.
Have you been diagnosed with POTS? What are your tips for dealing with the symptoms?