It's hard knowing just where to start with this message, so I guess I
will just jump straight to the point. I had my first seizure back in
1983 at about 4.00am. I woke to find my neck twitching, and a
sensation of my body loosing grip of what is up, and what is down.
Sort of like going into freefall, whilst yet lying in bed. That was
followed by the rest of my lower body beginning to jerk, at which
point I lost consciousness.
After a trip to the hospital, and a chat with my G.P, it was
determined that I had a form of nocturnal Epilepsy, and was prescribed
a nightly dose of Epanutin to deal with the problem.
Initially, the meds worked well, and I was able to continue living a
“normal” existence. However, over time the sensation of freefalling
started returning and it took a visit to my Neurologist for him to up
the dosage and free me of these unusual seizures.
Now that is the easy part.. the fun starts when I have yet another one
of these seizures, where I find myself turning my upper body to the
right, whilst my eyes try to lock onto something that will give me
back my equilibrium. The problem this time is I am not in bed as
usual, but standing in my works canteen. Needless to say it didn’t go
unnoticed, and I had to go on the sick while my doctor sorted my
medication levels out, in doing so allowing me back to work once more.
Except that didn’t happen.. in fact the Neurologist whom I saw when
first having this problem, looked at me as if I were stupid, and
informed me he didn’t understand anything I was saying to him when
trying to explain what exactly was happening when I have one of these
seizures. Which is the same thing as it ever was, and even is to this
very day… I feel the sensation of freefalling, my heart goes into
overdrive, and my blood pressure shoots up, or so it would appear when
looking at my head, as it becomes beetroot red with the blood my heart
has jumped into overdrive. Then within ten seconds or so, I get a grip
on my stability and presence in relation to my surroundings, and
everything resorts back to normal. However, it is only due to the
Epanutin that things generally subside in such a short space of time,
and during the seizure itself, I am convinced that it is going to
slide into a full blown tonic clonic attack which of course was how
all of this started. Yet instead of me losing consciousness it seems
to pull out of the nose-dive right at the last minute, leaving me
shaken but in some way also relieved.
Now over the last 10 or 12 years, I seem to have been getting the
run-around by certain people in the medical profession, and of course
none of this is ever going to be in my favour, as one academic is more
likely to take the word of another, over anything I may have to say..
especially when it contradicts what my medical records re****t.
I like so many other people on here, find myself not only having to
deal with living with Epilepsy, but also deal with being looked down
upon by professional people who seem to think I enjoy NOT WORKING, NOT
DRIVING A CAR and LIVING OF THE STATE. I now have that wonderful label
of pseudo seizures tucked within my files, and how the hell am I going
to get anyone on my side when such damning things are woven into my
medical records!!
Bottom line… I’ve had enough, and if I don’t take my own steps to get
this mess resolved, it is never going to happen, and I shall just
spend the rest of my days “existing”.
What angers me the most is I KNOW I HAVE EPILEPSY….. not Panic
attack’s, not nightmares because my brother died when I was six years
old, not pseudo seizures or any other label you can pin this down to,
it is plain and simply Epilepsy… and now I have had to take steps to
prove it.
I had an appointment coming up to see yet another Neurologist recently
at my local hospital, as I was wanting him to change my meds from
Epanutin to a new drug that didn’t have the same side effects, as I
felt well over twenty years on that old junk is longer than I needed
to be on it. However, on meeting this doctor, he informed me he has NO
RECORDS whatsoever to refer to, as it appears my past medical records
have been transferred to disk.
What a joke !! Anyway, I explained to him about my seizures, and told
him how they first started and that the ones I have regularly when
sleeping are identical to the first one I had except they do not
materialize into a full blown tonic clonic attack. Which of course is
due to the medication I am taking each evening. I then thought of a
wonderful idea and informed him I would video these seizures I was
having whenever I went to sleep, thinking that could only help my
cause in getting the correct medication to deal with them, and within
a couple of weeks had posted him a DVD with several of these seizures
taking place. Only to discover at a later date, that he has sent a
letter to my GP talking out “pseudo- seizures” and panic attacks in my
sleep. I swear I cannot believe these people. Anyway, I finally had to
subject myself to the worse thing possible, when I told my GP I would
video my seizures once again, this time for him to view. Only this
time, I would lower the level of Epanutin I was taking and prove that
the seizures would eventually turn into a full blown tonic clonic
attack. I told him I was tired of being labeled as someone with
pseudo-seizures or whatever else they have had put in my files since
this all began. It is so frustrating to know myself that nothing has
changed in 25 years with my Epilepsy.. It is the same now as it was
then, it’s not that difficult to grasp, yet I feel it’s me against the
medical profession at times.
So, I did what I said I would do, and within 16 days I ended up having
a tonic clonic attack, which isn’t the best thing to allow yourself to
have when home alone, but what other choice did I have. So now I have
a do***ented record of my condition over a 16 day period, and have
since passed the DVD along to my GP. And if that doesn’t prove what I
have is Epilepsy, then I guess nothing will.
Now what I am trying to find is someone who understands the seizures I
am having, hence this letter. I am pulling out all the stops to
finally get the meds that I need to get my life back, but right now
it’s a needle in the haystack scenario. Somebody, somewhere is
familiar with what is happening during my seizures. Statistically, I
cannot be the only person in the world who is suffering in this way.
And so here is where I need you help…. I have posted below, a web page
that I put together today, and on there is clip from when I am woken
by a seizure. If you think you are familiar with this condition, or
even suffer with something similar yourself, please check it out and
give me any feedback you think may be useful to me.
I apologize for the length of this letter, and thank you for your
patience..
Alex.
http://www.alex111.350.com/Alexander111.htm
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