Thursday, 26 March 2015

POTs Treatment (Postural Orthostatic Tachycardia Syndrome)

On Tuesday I took a trip to London to attend an appointment at the National Hospital for Neurology and Neurosurgery .  I had been referred by my heart consultant and I was really happy to have this referral as I knew that my heart consultant had got to the point that there was no more he could do for me.  I had naively thought that a hospital of neurology would also be able to help with M.E. as well as the POT syndrome (which I just consider a symptom of my M.E. really).  However the consultant I saw was purely focused on the POTs and made it clear that she was not an ME specialist.  It seems strange to me that when 80% of people who have ME also have POTs, that a POTs doctor wouldn't have a greater knowledge of ME.  They must see lots of people with ME.  There is also the issue that when you have ME a multi faceted condition, surely it is difficult to just isolate one issue and deal with it without taking the other situation into consideration.  One of the non drug treatments for POTs for example is exercise, well there's a reason I need someone who has an understanding of  managing exercise with M.E.  I mentioned for example that I was very interested in the work of Dr Nancy Klimas in the US, who is using a "below anaerobic threshold" exercise programme with her ME patients, but was told that they couldn't help me with that.
So, lets set all that aside and just say that I was hoping for a slightly more all around approach to my current condition.  What I in fact got was a very detailed and specialist approach to the POTs which regardless of the above paragraph, I am very grateful for.  I had known for example that I needed to increase my fluid intake, but couldn't find out any specifics on by how much and I knew I had to increase my salt intake, but couldn't find out by how much, so all this verbal information was very useful.
I had a very thorough physical examination where I was checked for hyper mobility in my joints.  It appears only my elbows are hyper mobile and I scored a low 2 out of 9 in that test, which is good and all my reflex reactions were tested and were all normal.  So, physically I did well and the doctor said that was good and a little unusual.  My heart rate was 107 sitting and only rose to 112 on standing - this is where the Ivabradine drug has really helped me. 
The doctor took a detailed history and asked me if I wanted to attend a support group which i declined at this stage thinking it not practical with the travelling involved, but I might take them up on that at a later date.
They are going to give my autonomic system a good check over, with two days of testing  including another tilt table test, 24 hour blood pressure and heart rate and blood tests.  There are different types and causes of POTs and when they have all this information they will be able to then offer a more accurate treatment programme.  I was given the choice of travelling up to the hospital on two consecutive days or staying over.
So, I came away a little disappointed that I wasn't going to get any specialist ME help, but happy that if they can treat the POTs and ease the symptoms, that should make everything in general easier.
Whilst I wait for my appointment to come through I need to increase my fluid intake to 2 to 2.5 litres, take salt with every meal up to a full teaspoon a day and try and continue with any exercise I can do, but specifically, recumbent cycling and swimming - both very good for POTs and my yoga practice.  The idea with exercise is that you build good strong muscles in the legs which then squeeze and support the blood vessels in the legs to help pump the blood back up.

Energy wise, it's not been a great couple of weeks, I still haven't been able to do the normal yoga class but am enjoying my yoga at the therapy centre.  It has also been a time of emotional stress, both good and bad, which always has an impact physically.  I need to focus more on pacing and continue with tightening my other protocols until my reserves are a little stronger and then keep going with more of the same!

1 comment:

  1. I've got a blog post brewing in my mind on this topic too. My cardiologist seems very focused on the heart rate bit of POTS at the expense of the Syndrome bit. This seems fair enough in a way because he's a cardiologist and this is relevant to his training. I was hoping to get a prescription for something like Mestinon which might help broader ME symptoms as well as POTS. I don't see much point going back to my local ME/CFS centre as they just look at Pacing. I think Pacing is useful but I do know about it by now. I spoke to them on the phone after a referral mix up and they couldn't guarantee I'd see a doctor (you're randomly assigned GP/Occupational Therapist/Physio Therapist) and they don't test or prescribe for anything. That was before I got a POTS diagnosis but I was pretty sure something else was going on. My GP didn't know about POTS until I suggested it so there's no way I'd have got to a diagnosis without bloggers like you writing about experiences online.

    There are lots of medications that can help with ME but where do you go to get any in the UK? In that sense the ME/CFS centres have been a backward step, as when I was diagnosed with PVFS then ME/CFS it was an immunologist who tested me for other things and prescribed based on symptoms (eg betahistine for vertigo).

    I was wondering about a neurologist but from your experience they're too focused too.