Update On Treatment 17th November 2008

On 29th October I went into the National Hospital for Neurology and Neurosurgery for more autonomic tests. I have not had the results yet. I was also started a trial of the medication Midrodine which I took up until 12th November. However, I had to stop taking this medication. I felt terrible on it. I was only taking 1.25mg but it made me really depressed, I had chronic pains in my stomach, I could not concentrate and I felt really tired all the time (more so than usual). On 29th October I had stopped taking the fludrocortisone to trial the Midrodine. I think being in hospital again made me worse as I was in bed again for most of the day. Everything I have read from other patients that have POTS seems to indicate that exercise is the best thing to elevate the symptoms of POTS. Therefore I ordered an exercise bike (one that I could sit down on with my legs in front of me) for details see link
http://www.argos.co.uk/static/Product/partNumber/3354492/Trail/searchtext%3EEXERCISE+BIKE.htm

On Thursday 13th November I decided to do the following and stick to it if possible to give my body the chance to recover and possibly heal itself.

Stay out of hospital if possible. I think the key to recovery is to be as active as possible. If you spend lots of time in bed this makes the symptoms worse. It is a catch 22 really because with the fatigue it is really hard to move around but it really is essential. If you are in hospital make sure you do lots of leg exercises to keep the circulation going. These can be done laying down as I have mentioned in the blog below.

Exercise on my bike every hour if possible for a few minutes.

Eat frequently (every three hours if possible) and follow the GI diet as detailed in my blog below.

Increase my salt (I have just ordered some tablets). I have found scrambled egg is a good food to add lots of salt to and also soups but I might take one tablet at night to stop me waking up during the night and being dehydrated.

I have ordered some Nuun tablets because I found them on another POTS website and I believe they help with dehydration.
http://nuun.urbanadventuregear.com/p13/What-is-Nuun/pages.html?gclid=CIyCnO2N_JYCFQ6R1QodA2PUYg

Drink plenty of water to stay hydrated.

Go for a walk every day to try and build up my stamina (I now have a wheelchair which I take out with me and I push it. If I feel my heart starting to race I can then get in it and someone will push me home as I am not yet going out on my own. I have found that getting the wheelchair is the best thing I could have done as it is helping to boost my confidence. Hopefully soon I will not need it but there is nothing wrong with admitting that I have a chronic illness and that I need tall the help I can get. I think facing up to this is one of the biggest hurdles to overcome.

Wear my TED stockings http://www.activahosiery.com/howactivaworks.asp

Take my paediatric Atenolol (the dose that seems to suit me is 5ml at 7am, 12 noon and 5pm)..

I can not believe the change in me even since last Thursday. My heart rate has dropped and my blood pressure has increased slightly. I nearly feel like my old self again and as I am starting to work from home today I think that this recovery is just in the nick of time. I am praying that it will continue and eventually I will be able to get back into the office. Watch this space!