Update On Treatment 6th December

It is exactly a month do the day since I was discharged from hospital. The change in me is incredible I think. I have been doing everything that I said I would in the November update on treatment and I can hardly believe how much better I feel now.

I think that the most important thing is to STAY OUT OF BED!!!

I still really struggle with the fatigue first thing in the morning and really struggle to get out of bed but I force myself and that is the best thing to do. If I stay in bed then my symptoms get worse.

My Routine

My routine now is that I get up and immediately put on my support tights (I have also started to wear support knickers to help with the blood pooling in my stomach).

I then take my atenolol. The medication does take about an hour to start working properly but even although my heart is racing (especially if I need to walk upstairs) I need to start to exercise to get my circulation going. I therefore go downstairs and get on my exercise bike for ten minutes.

I then have my scrambled eggs with lots of salt and a pint of water to keep me hydrated (I am still eating little and often and sticking to eating GI foods).

I am very fortunate in that my work have allowed me to work form home part time. I did not ever think I would be fit enough to work again but I now can sit and work on the pc for 3.5 hours in the morning which has made me feel so much better in myself. I plan to really build myself up so that I can try and attempt to go back to working in the office mid January. This does seem a little ambitious but I am on half pay now and need to meet my mortgage. Still it gives me the strength to fight back and get fit again.

Mid morning have a bowl of soup with lots of salt in it. This means that by this time of the day I have lots of salt in my system and this seems to really help. I did not get on with the salt tablets. One of the problems I found with POTS is that I can not swallow large pieces of food and I am dreadful taking tablets. I could not swallow the salt tablets as they were too big.

I go for a fairly brisk walk in the afternoon for at least thirty minutes.

I now only usually need to take my atenolol once in the afternoon now but sometimes I need to take it a third time. I am beginning to know when I need to take it now without taking my blood pressure.

I have also bought some great dance cd’s and started to dance at home to exercise in the early evening. At first I found this really hard but I now can dance for about fifteen minutes at a time. This is a fantastic way of building me up and as I really enjoy dancing it seems to boost my moral.

Additional Information

I still have to use my wheelchair if I go to the supermarket because I can not stand in line for long. I do feel that it was the best thing that I ever bought as it has enabled me to have the courage to go out again and thus build up my stamina. I can now walk round local smaller shops and I find as long as I keep moving I do not have a problem with my heart racing. I am also fine in the car now (before I felt so ill in the car, it was like sea sickness).

One great thing I have noticed is that my blood pressure does seem to have gone up and I think that this is maybe why I am feeling much better. I do think that the support tights and exercise with regular intakes of salt are mainly responsible for this fantastic improvement.

I am now fit enough to be able to have treatment by my osteopath Stephen Sandler stephen@chingfordosteopathy.co.uk My first treatment was on 1st December and I am convinced that already he is helping me to get better.

Test Results

I have said that I feel it is important for me to stay out of hospital to get better but this is only because of the amount of time spent in bed whilst in hospital. I can not stress however the importance of staying in hospital if you are unwell and do need to undergo all the relevant tests required. Without these tests it is not possible to get a proper diagnosis and if you have not been properly diagnosed then it is not possible get the appropriate treatment.

For my part I have now been diagnosed with both Marfans and POTS. I am very fortunate in that my autonomic system is not too badly damaged and most of the extensive tests that I had came back normal. However the tests that confirmed POTS were tilt table tests, a twenty four hour ambulatory blood pressure and heart rate profile. An autonomic food challenge test showed that my blood pressure was lower on postural change post meal. The autonomic exercise challenge test showed there was an appropriate rise in blood pressure and heart rate. However post exercise, even fifteen minutes later my heart rate was elevated and was greater than on standing pre exercise, as apparently often is observed in POTS. I do not appear to sweat but did not want to take the sweat challenge test so instead a sympathetic skin response study was performed which showed preserved responses in the upper limbs but absent responses in the lower limbs. The only other test that I had which showed a slight abnormality was a twenty four hour urine collection which showed that there was slightly too much calcium in the urine.

It is so important to get all the scientific facts right and now that I have my test results I know that it is safe and very important for me to resume exercising regularly but on a graded basis. I also have been advised not to do anything too strenuous after eating a meal as my blood pressure could drop. Armed with this information I can gradually try and adapt my life and try to get back to normal again.

Now that I have had time to reflect I really do think hat I have had POTS all my life but because I have lead such a busy life (I used to get up at 5am and not stop rushing around all day and only sit down for an hour in the evening at 10am before going to bed) the symptoms have been suppressed. I think stress (my mother was very ill and rushed into hospital and I had a lot of stress at work) was what started my symptoms and because I was so sick I could then not get out of bed as I was hospitalised. Catch twenty two. Bed and rest appear to be bad for me. I conclude that iff I keep on the move I am better.