Wednesday, 15 February 2012

Tilt table test

What a horrible day yesterday.  I went to the hospital to have a "head up tilt table test".  My appointment was at 1.30pm and at 1.20pm I was striding down a corridor in the hospital on my way to the Cardiac centre feeling really good.  As I strode my mind went back to the first few times I had visited this department with my husband Ant.  At that time I couldn't use the stairs to get to the first floor but had to use the lift and then the walk down the long corridor to the cardiac centre was such an effort for me.  Not this time, this time I was up the stairs without a thought and striding purposefully in the direction of the test.
A nurse sat with me in the waiting area until we were called to go through to the lab where the tilt table was.  First I was attatched for ECG readings and then about 4 different blood pressure monitors.  My arm was put into a sling to support one of the blood pressure monitors and then I was strapped onto the table which had a foot plate at one end.  The doctor came in and explained what might happen and had a quick chat and then he handed me a fountain pen to sign the consent form - not easily done strapped in with monitors on two fingers and arm in a sling, so that was funny.  Then they dimmed down the lights and then started to tilt the table up.  I thought I was going to throw up, it felt like my head was being left behind.  When the table was at 70 degrees it stopped and there I stood for 40 minutes trying my hardest to meditate and take myself away from the room where two doctors and two nurses stood and sat watching me and the computor screen.  When the 40 minutes were up I was lowered back down again which was really wierd because even when I was lying flat my brain thought my feet were higher than my head.  I was unstrapped and then had a chat with the doctors over the results.  The best thing is that my blood pressure was fine and responding in a way which they were happy with.  My heart rate however was more of a concern 120 or 130 beats per minute, peaking at 160 bpm, not so good considering I was standing still.  The doctor's thoughts are that this is probably a problem with the endocrine or nervous system.  He thinks there is a good case for increasing my betablockers - he would suggest 5mgs (that's 8 times what I'm taking at the moment) or taking the other drug that was recommended Ivabradine.  He did say I would make an interesting research project for a doctor that had the time and money.
The conclusion then, that my hearts beating too fast and they don't know why.  No further forward.  This is fustrating.  I managed to drive home, but then felt horrible, irritable and tired.  The doctors can't tell me why this is happening or whether it will sort itself out and go away.  He did say today though that my heart can't go on beating like this in the long term.  It will get tired and that will cause problems.  If it doesn't sort itself out at some point I am going to need to take more medication.  I am still hopeful that Dr Myhills protocol will continue to strengthen my systems and that this will sort out my heart rate.  Once home the realisation set in that my heart had been beating fast for 40 minutes which is probably enough to trigger one of my night time funny turns.  I went to bed and didn't sleep well, I was awake betwen 2am and 4.30am BUT I didn't have a turn.  This is very good.  The stress of the tilt table test (emotional and physical) was a test for my body which I feel it has passed. 
I felt better on waking this morning, then had a blip mid to late morning when I went out, but have got better as the day's gone on and my heart rate seems to have settled back into it's normal pattern - about 92bpm at the moment.
I had a letter today from the CFS service from the Royal National Hospital for Rhuematic Diseases in Bath.  The lovely specialist I have seen there - Dr Janet Grey - has left the service and do I want to continue using the service.  This is such a shame, she was so knowledgable.  I'll give them a call tomorrow and see what the options are.

Friday, 10 February 2012

Mental low to snow fun high

The past month hasn't been so good.  No major relapse or anything, but just a general feeling of malaise and days with heavy legs, made more noticeable because it contrasts with how well I felt over Christmas and the New Year period.  Had one particularly low day where I felt a bit sorry for myself, that doesn't happen often and I managed to shake myself out of it. It came after watching a tv clip of a woman who's partner had ME talking about how it had effected HER life.  It made me think about Ant and how fantastic he's been throughout all this.  At my worst I couldn't have coped without him, this has had a big impact on his life too.
Enough of the negative, it is important to stay positive.   I must continue to try and meditate twice a day, it does make a difference.
Had some blood tests back last week and they were all looking pretty good; ferritin 17 which is good for me, thyroid within normal range and kidney function up on what is was, so that's  encouraging.
Saw my Cranial Osteopath yesterday, he said that at my previous visit my body felt like I had overdone things (easily done when you have a period of feeling good).  So, the roughness I have been feeling in the last few weeks is probably my body's response to having over done it.  Yesterday he said my body responded well to the treatment and he was pleased with that.  Completely took it out of me though, I was good for nothing afterwards and was in bed at just gone 7pm.  This morning I woke with a disturbed sense of balance which wasn't very nice, but had gone by mid afternoon when I went out and manged some frolicking snow fun with the children.


Went to have an echocardiogram on Friday.  Always nervous going for this sort of thing.  The radiographer was lovely and said that everything looked fine, so that is reassuring.
Not been feeling quite as good as I did over Christmas and the early New Year period, just a low level feeling of malaise, not quite right.