Friday, 7 October 2016


I had been doing some researching to see if I could nail down a part time job, to stop me from going out of my mind being stuck indoors especially now the weather is getting cold, when I got the idea that as I go I could post my progress.

Not really enough to post just yet and still ... well finding my feet really.

I was just about to get some rain water for my orchids while wondering whether to go out on my bike and do some research when a letter came through my door.

It was an NHS letter and I thought 'oh crap?!!'

A few weeks have gone by since I had the MRI on my head as well as the EEG and I was now beginning to think I can forget about a malignant tumour, provided there was no serious cock-up in the sending of test results? I had figured that after this last week, or rather after today, that even with some cock-up going on it would not take this long.

So just as I was about to think I was in the clear I pick up this envelope with the NHS logo across it.

I was fully expecting the letter to ask me to phone up and make a new appointment.

Only I realised it wasn't as I read it and then realised it was not the second thing I thought it was?! Yeah I am confused too. What it actually is is not the only thing that confused me and I will explain ...

It was a report to state that my EEG was normal, the test where I had three spikes of pain that made me flinch all three times.

So I then assumed that it was a copy of the report to be sent to the Neurologist at Chase Farm Hospital, Josephine Swanton. Except it wasn't and was actually a letter from Josephine Swanton to my GP stating that the EEG was normal?!

Giving the benefit of the doubt maybe pain spikes like I had are ignored because it is not primarily what they are interested in?

What is odd is that the MRI result was meant to come in at the same time. The 3rd of September was the MRI with two weeks for the results to arrive, as I was told making it sound like they had found a lump. Then exactly one week later I had the EEG at Royal Free Hospital, which got me into loads of trouble at court, which was to take a week. Meaning it would catch up with the MRI results from a week earlier.

Bearing in mind it is now ... 7th October so around four weeks later, I am left scratching my head why the MRI was not mentioned and also why you would send a letter through about one result when your waiting on two that should come in not that far apart?

I had wondered whether or not that in certain circumstances postural hypotension can be so bad that it can cause blackouts? But the jerking or convulsing like feeling I had when it happened did lead me to believe it was not a normal blacking out, though I was sure that due to the way the blackouts and falling completely unconscious that I was not epileptic. So despite the jerking brain feeling I did not think for one moment I was actually epileptic, just as I told Josephine Swanton at that first appointment.

So yeah ... a bit odd and quite unexpected to get that sort of letter and to even be sent a copy anyway unless of course my reputation from a few years back has made them do this?

Hmm I keep forgetting to look up bad postural hypotension, I am sure I tried looking a few months back though, so let us do that now...

Orthostatic hypotension is often mild, lasting a few seconds to a few minutes after standing. However, long-lasting orthostatic hypotension can be a sign of more-serious problems, so talk to your doctor if you frequently feel lightheaded when standing up. It's even more urgent to see a doctor if you lose consciousness, even momentarily -
Now as a reminder I do not have your average Postural Hypotension and purely because my Fibromyalgia, or so my GP's brother told me who was my previous GP, causes my blood pressure to be quite high. Over 140 was normal and I even registered 182-3 on one occasion.

I did some tests when I was feeling the blackouts coming on, normally while holding some shelving in Sainsburys, and I had it go down to ... hmm was either 60 or 40.

Maybe a drop that much in a very short period of time can cause you to fall completely unconscious? I simply do not know and was unable to find anything about it reading up things about Postural or Orthostatic Hypotension.

I imagine it is impossible to give me pills for as these will be cheap and raise my blood pressure, when I already have high blood pressure? I did read somewhere there are pills that keep your blood pressure at a certain level but I would hazard a guess here that as these were never offered to me that they are . well, expensive? Lol.

Let us give them the benefit of the doubt once again and that they just want to make sure and that maybe I will be offered these pills at my next GP appointment?

And why was I told the MRI result would come through in two weeks when it is now four weeks and no sign of it? Especially when the sign on their waiting room wall stated that tumours arrive in two weeks and non-urgent ones in right? A bit stupid telling people that when you have that sign on the wall. That could lead to patients living in mortal fear for weeks on end?

So I think it is safe to assume that either it will be a cyst or the postural hypotension in combination with the high blood pressure and not a brain tumour? That is what I am thinking now. That Arachnoid Cyst?

I have lost a lot of weight and have not taken Tramadol in many weeks and I have not had a repeat of the the blacking out to the point of falling completely unconscious but I am still have the blackouts daily. Just to the point of stopping still for a few moments, bending over or grabbing shelving or my staircase.

As for the letter ..

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