Tuesday, 18 March 2014

Dr Mukherjee, menopause and ME

Yesterday was a long day.  I travelled all the way to The Royal Salford Hospital in Manchester (4 and a half hours each way!) to see Dr Annice Mukherjee.  This Dr had been brought to my attention by my Perrin Therapist who had heard her speak at this years Perrin Conference.  Dr Mukherjee is an endocrinologist who has a special interest in ME and as I have been having lots of menopausal symptoms recently I thought she might be a good person to speak to.  As I sat in the waiting room I wondered whether the trip was going to be worthwhile.  I know there is no cure that this doctor (or any) can offer, but I do realise that looking at all the pieces of this M.E. jigsaw is a useful exercise and seeking out information from those in the know is adding more pieces and this is what I was hoping to gain from my visit.

We talked through the history of my case and generally about how it had progressed and what current treatments/supplements I am using and just built up a big picture of the situation.  Apparently, it is very common for menopausal symptoms to hit  women with ME and throw the managing of ME symptoms off balance and further effect their energy levels.  So, she has recommended a supplement called Promensil Red Clover, which contains naturally occurring plant oestrogen's.  This will hopefully ease off the peri-menopausal symptoms and in turn even out my ME again.  Her second recommendation was to take some iodine.  Iodine helps to boost the thyroid and will hopefully bring my TSH levels down - she has seen this in other women in my situation, so that would be good.  The third recommendation was to pull back a bit on Dr Myhills supplements and move to only taking daily recommended doses rather than the rather high levels of some of them I am taking at present. I feel they have done well in helping to build me up over the previous 3 years, but now I'm going to let some of them go.

Before I left they took lots of blood in order to do some thorough testing.  I get the impression Dr Mukherjee will leave no stone unturned.  She was very generous with her time and very informative and I did feel that the long trip had been very worthwhile.

Dr Mukherjee has a website www.fatiguewise.co.uk 

I particularly liked her clear, caring and research led style.  Yesterday reminded me how important it is for us all to take responsibility for our own well being as much as possible and seeking out those who might be able to help is a part of that.  We are lucky that we have an NHS where, if you have a referral,  you can request to see any doctor based anywhere in the country (as I understand it) and I am lucky enough to have a GP who was willing to refer me.

Saturday, 15 March 2014

Ivabradine and ME crash

I've been taking the Ivabradine to help with Orthostatic Intolerance for over a month now.  It has undoubtably had an effect on my heart rate which is great, if I am sitting my HR can go down to the mid 70's now and is quite often in the low 80's.  When I stand it slowly rises to low then mid 90's  but not over 100 (these are generalisations).  I was interested to see then what happens when I experience a crash with my ME symptoms and for the purposes of research obviously my body kindly let that happen this weekend!

It was triggered by a meal out with friends on Friday night although I have to acknowledge that the week leading up to Friday had been pretty stressful, visiting my mum in hospital after she had had surgery.  Anyway it was 11pm before I got into bed on Friday and I woke Saturday morning feeling like I had drunk 3 bottles of wine the night before not the 2 glasses of bottled water I had actually consumed.  In regards to the ivabradine, what I noticed was very similar to the pancreatic enzymes I have taken - when my body is doing well, the medication has the desired effect, but when I crash the medication seems to have little effect.  My base line heart rate whilst sitting went up and was high, although there still did seem to be some control over it when I stood, it didn't go as high as it did pre-medication.

The other thing I have noticed over the last month with the Ivabradine is that I am getting  palpitations again, something I haven't really suffered with lately.  They are not nasty, fast palpitations, they are slow and the best way I can describe them is empty or like echos, a hollow feeling in my chest.

My heart rate is definitely down and that's a good thing, but I can't actually say that I am feeling any better as a result of taking the pills YET.  By Wednesday I felt I was starting to recover from the weekends crash - I had such weakness in my thighs which finally went on Wednesday - so now I'm on the way up again and we'll see how it goes.  The theory is that reducing the heart rate allows you to tolerate light exercise and that being able to exercise will help the POTsyndrome.  Is anyone else out there taking Ivabradine for their ME/CFS?