Ocetreotide Trial

On Tuesday 8th April 2014, I am being admitted into the local hospital for a trial of the drug Octreotide. To say I am a little nervous would be an enormous understatement. Anyone who has read this blog for a few years will know that the local hospital and I don't have a great track record.

From around 2009 - 2011 I had been diagnosed without my knowledge with somatoform / conversion disorder. My tilt table test on 21st January 2011 was going to be my last ever test on the NHS, if it had come back negative I would have been referred to the Mental Health services.

I can't say 100% if  somatoform / conversion disorder is what I had been diagnosed with. I've seen reference to it in one letter - a copy of which was sent to me. I'm guessing that my Dr had found it when he looked through my notes prior to us meeting in 2011. Having brought it up with my GP, it was never expressly acknowledged but it wasn't denied either. My GP is the sort of doctor that if you said something that was inaccurate he would put you straight, especially when challenging something another doctor had said. So I know some reference was made to my health problems all being in my mind.
http://en.wikipedia.org/wiki/Conversion_disorder  this link explains it better than I ever could.

My care at the hands of the medical professionals that I came into contact with between 2009-2011 changed dramatically. Before I had been treated as any patient would expect to be treated, professionally, courteously and with an interest in how I was doing. After 2009 things changed dramatically, all the staff I came into contact with were cold and would barely speak to me. They gave me the least amount of help they could get away with, even going so far as refusing to treat me when I had low vitamin B12 and the haematologist informed them I needed treatment as I was symptomatic. For sufferers of conversion disorder etc medical professionals believe they have to stop providing "care" as it fuels our need for medical attention. My care since 2011 and getting both my POTS and EDS diagnosis has been back to normal, caring professional and courteous.

I've seen my hospital notes from this time and its not a nice read. There are medical observations written in them but there are also personal attacks on my character and on my family which serve no medical purpose at all. I was devastated when I read them and these were the version which they believed wouldn't damage my mental health.

http://www.nhs.uk/chq/Pages/1309.aspx?CategoryID=68&SubCategoryID=160

In the UK your doctor decides what you can and cant see in your medical notes. The neurologist I had been under since 2007 declined to allow me to see anything he had written about me in the 3 years I was in his care. It makes you wonder what he was hiding and why?

So hospitals now fill me with a great deal of fear. Even when I see my consultant who treats my autonomic dysfunction, I can never completely trust him. I've already had a couple of doctors be nice to my face and then write absolute rubbish about me in my notes. When you've seen this first hand its very hard to trust people in the medical profession as you are just waiting for it to happen again because previously 99 times out of 100 it happened.

I spend every hospital visit waiting to be told that the doctors have changed their minds, I don't have autonomic dysfunction and that all the care I have been provided with since 2011 will evaporate. I suffer with terrible anxiety before any trips to my outpatient appointments, it causes sleepless nights and for me to shut down and become uncommunicative, such is the psychological damage the previous doctors have wreaked upon me.

As you can imagine the prospect of two days as an inpatient is causing the old anxieties to surface. If its bad now ( the time of writing this post is Wednesday 2nd April 2014) what the hell am I going to be like by Tuesday (8/04/2014)?

When the hospital letter arrived confirming the dates for my admission the first thing I checked was which ward of the hospital was I being placed on. If it had been the ward I had previously seen so much of, I would have cancelled there and then. There is no way on earth I will ever go back to that ward. Thankfully I am being admitted to a ward I have never heard of. There is a remote possibility that I will come into contact with my previous medical team, I can live with that and that's what MP3 players are made for!

I don't know what the drug trial will involve so I can't really tell you much about it. The drug I will be trying is called Ocetreotide
http://en.wikipedia.org/wiki/Octreotide  and it is injected subcutaneously ( under the skin). I am imagining there will be at least one tilt table test to check if the drug has worked or not ( another thing I'm not looking forward to as my health has been in the toilet since the last one).  I have bought some lucozade to take with me as at the last tilt table test http://en.wikipedia.org/wiki/Tilt_table_test my consultant forgot to bring some. Luckily we had brought some with us knowing how busy my consultant can be! So I will also be coming prepared this time. They like doing the tests with lucozade as this gives the most dramatic results in people with post prandial hypotension.    http://heartdisease.about.com/od/syncopefainting/a/Postprandial-Hypotension.htm

The first day of the trial is to see if I can tolerate Ocetreotide, if I cant the trial will be aborted. The second day, if I have tolerated it and the tilt table test confirms that it has reduced or got rid of my symptoms, will be spent learning how to inject myself. Once they are happy that I can do that I will be allowed to go home and then the fun may begin with getting the local care commissioning group to allow the drug to be prescribed to me as a) the cost and b) its being used off label. So even now I don't know if I will be coming home with the drug if the trial is successful or if I will have to see if my GP will be allowed to prescribe it. Talk about jumping through hoops!

I've included a few links in this post so that you can find information easily should you wish to find out more.

Obviously I will update you in future posts! Of course my admission to hospital depends on whether or not a bed is available so I could be worrying myself sick over nothing!

***quick update Monday 7th April I received a telephone call to say the trial has been moved to the 14th April. **

Frankie!