I am drying off after a shower and intend to go out but restricted myself to bike only.
I do have to go to a new chemist as I have had enough of Lloyd's Chemist and am going to one that is closer, new, an old name and I keep forgetting is there!
While I was drying off and drinking a mug of tea I thought I would look into that drug Sodium oxybate. I had considered doing this earlier but was a little superstitious about it. Kept thinking I would put a bock on myself what with the Guy's Hospital appointment approaching and all. Thought it better to wait and see just on the off chance I was wrong or they tried to lie as has been the case so many times.
I was a bit surprised when I found this page which is a UK webpage and for Narcolepsy, in fact Narcolepsy UK for those that have it and wound up on my blog.
On this page you will note that the brand name, there could be others as this name is used by whoever manufactures the drug, is Xyrem, prononced Z-EYE-REM.
Also you can see that it is available in the UK but I was surprised when the guy at Guy's Hospital had not heard of it, sure my GP will raise an eyebrow when I tell him that.
But the most surprising thing of all on there is the actual annual cost of admistering the drug which is £13,000 per year?!
Yes OK this is nowhere near the costs of Herceptin, when it was introduced at least, but its still ridiculously expensive. I really do not understand how these drug companies work out their prices sometimes.
At the end of the day a new drug is just that. Whether there are already drugs that work for conditions or none at all, they did not possess the drug previously because it is new. But unfortunately and as I covered before with Herceptin these companies have their heads in the clouds when it comes to numbers.
I mean what idiot drugs company invents a drug and then prices it so that Health Services will not buy it?! It is madness! Especially when it is for a condition that is not that common as it is in my case. I only ever met one other person who had Fibromyalgia and I spoke about this previously. Especially how I kicked myself for not asking her more in depth questions about it! I think I got the condition mixed up with scoliosis becaise I thought it was a condition that only affected the back. But then this was in Waltham Abbey and I had just cycled many miles and at the end up a big hill, so was always out of it when I got there.
After extensive research done previously, but still ongoing, Sodium oxybate is the only drug to my understanding that does rid someone of the symptoms of Fibromyalgia. For just as the Doctor at Guy's Hopital stated to his student that the condition is to do with unrefreshing sleep.
Now for those that do not know, and odd ones with limited understanding but think they know it all, lack of unrefreshing sleep is quite bad. It is also the one reason that shows EVERYONE exactly why there are so many things wrong and someone is not a Hypochondriac.
Put simply the brain needs to go into a deep sleep, NO not REM sleep, whereby the brain does its household chores of repairing everything and ridding things from the body. If the penny has not dropped this is all of the body. From every organ, including skin, and every channel that exists on the body to every part this is NOT reparing itself as it should and this is night after night and ongoing. Not hard to get your head around now is it? Or not rocket science as one used to say.
Then once you realise that you have to consider the possibilities and consequences this has on your mind to! It can and does cause depression and anxiety disorders. I have stated many times that my mind feels like its going a thousand miles an hour and my body not wanting to move at all. SOmetimes my brain does not want to go at this speed either, or at least some of it does not.
In highly stressful situationsI get a block, rather like a mental block or a writers block but it lasts longer and is a lot more frequent. The same is also true of all other things despite people saying, yeah but I get that all the time, when they actually mean six times a year and not a dozen times each day.
The very weird thing is that I already proved this a very, very long time ago when I was at university.
I deferred my Final Year Project, or Dissertation. In so ding I had a lot more time to do this and I did it to perfection and this is mentioned many times and even by others throughout this blog about me.
Most of my grades were in the Upper Seconds, B+, and over half of them were. The others were made up of Lower Seconds, B-, and the odd Cs. Hoewever in my dissertation I shocked everyone, including myself, when I was awarded a Distinction, 'A', for my thesis which is your most important work!
After the initial rejoicing as I would have been more than happy with a B+ O then thought about the fact this was my firs and only Distinction! I wondered if the university might have thought I had plagiarised my work, which I did not of course.
As a matter of fact noy only could I say that they may have suspected this and downgraded me despite no proof but that this very part of this explanation is found on my blog in a couple of places one very near the beginning! I also stated that I had a showdown with the Dean of Students who used the excuse that I had not turned up for an exam in the first year as an excuse despite me reminding him that according to their own rules the first year grades and discounted in the grading?!
So yes this damned block plagued me many times throughout my degree and I lost count of the number of times I was kcicking myself vecause I saw the solution at the last minute, seemingly out of some mental desperation, and my assignments would have appeared rushed and fragmented at best, explaining my lack of Distinctions earlier on.
Yes, yes I have said all this before but now contrast that with something else I said before and that was that one man that saw my Dissertation, which included animal taxonomy, biology and anatomy, was a graphics lecturer called Peter Pasmore, or Passmore, and he asked if I would join a team working on the software to train keyhole surgeons on how to perfom their surgey!
A pretty stark contrast I think you would agree?! Turning down that offer is one keypoint in the timeline of my life I so wish I could change! Two words were on option in both 'Yes' amd 'No' which resulted in two letters f the English alphabet that would have me rueing that day for a great many years to come.
Applying to Get Xyrem | Narcolepsy UK:
'via Blog this'
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