Looking For Anyone Who May Be Able To Help..

Thread view:

Enable EMail Alerts

Start New Thread

Thread rating:

Alex - 25 Feb 2008 05:37 GMT

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 didnt 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 didnt 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 didnt 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 report.
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 Ive had enough, and if I dont 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
attacks, 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 didnt 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, its not that difficult to grasp, yet I feel its 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 isnt the best thing to allow yourself to
have when home alone, but what other choice did I have. So now I have
a documented record of my condition over a 16 day period, and have
since passed the DVD along to my GP. And if that doesnt 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
its 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

Reply to this Message

G. - 25 Feb 2008 15:58 GMT

I left most of your Post below, so I can insert my *non-medical
comments wrt. your questions.
Did any of the Doctors run both EEGs and MRIs ? (Magnetic
Resonance Image?) Some places don't do those but go on symptoms or
behaviours during a szr. -- mostly due to time and cost involved.
What you describe below doesn't sound like any of the most common
seizure types (of about 5) that have specific symtoms and behaviours
even without above tests.
For one, *only? a Simple Partial seizure are we aware of what we
feel or do *once the seizure has kicked in and we're deep into it. We
usually have to depend on other witnesses or medical types to tell us
when we 'come back' what we did.
Your descriptions (I assumed) below, that *you are aware of, are
only? something that would appear under Simple Partial Seizures
(usually called An Aura), as it's only at those types where we remain
aware during the seizures.
I'll insert ofher comments below at **s. In the meantime if you
can see a post last week with the website that Juiie put up of the New
Idaho website there are links there that describes symptoms and
behaviours we might exhibit during a seizure. Look first at the
'First Aid for Seizures' section as that shows the main szr. types,
plus what the person might do at onset. You can see if any of what
you do matches the commonest symptoms. (These are usually the
outward signs of where the damage and electrical misfiring is occuring
in the brain, and leads to the determination that it might be
epilepsy.)
The main US Ep. Foundation website (I haven't read for a while) is
at http://efa.org and has a Medications glossary as well as symtoms
etc. of standard seizures. If you do a search under the Medicaitons
link for what was prescribed, that will often say *which seizure types
it is for. If it is *not in that glossary, there's a high
probability that med. is not to control szrs. *Also this in an
international site so it can take up to 24-36 hours before someone in
e.g. Europe or Australia might see your post and who has used that
pill type, so watch the thread you started to see what they come back
with if there are others still reading the group who has used those
pill types. G./

> 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.

****** See above, if you're Aware of this description, only the
Simple Partial Seizure leaves us at mental level where we are *aware
what we do during the szr. If it were e.g. Grand Mal or Complex
Partial, we're 'away' and only know what we did or what happened
from others who witness the onset. I couldn't tell from above it you
were describing a witness statement or your own observations so
assumed the latter. /

> 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.

**** I haven't used that pill, but there are other? conditions than
epilepsy that can produce those symptoms? (I had a college friend
years ago who had Narcolepsy and could drop into the equivalent of an
Absence seizure, without warning, in mid-conversation. His symptoms
(for 1) would be similar to above. Usually that's why an EEG and MRI
would differentiate if the symptoms were classic epilepsy or some
other neurological event that produced the symtoms./

> 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.

**** Similar to first comment I made-- if you're **conscious during
the 'freefalling' it's still under Simple Partial? and doesn't sound
like the other stronger szrs. where we're *really Away and not aware
what we did, except from witnesses around us. /

> 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
[quoted text clipped - 10 lines]
> looking at my head, as it becomes beetroot red with the blood my heart
> has jumped into overdrive.

**** Those don't sound like szr. onset--- did they ever look at (for
example) Cardiac tests or looking for other things that might be
caused by Heart or other conditions that might interrupt blood flow
and produce some of the symptoms you described? There could be many
other things that could produce symptoms like those without it being
epilepsy based. /

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.

**** Someone here with Simple Partials could comment, the Stronger
szrs. you don't 'come back' for periods measured from 10+ minutes to
an *hour or more. Some of my early Complex Partials, I was in
hospital for a number of *days before I know where I was.
A 5 minute 'In and Out' onset doesn't sound like one of the
stronger szr. types, which might be why they are not treating these as
epileptiform type events. /

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
[quoted text clipped - 8 lines]
> likely to take the word of another, over anything I may have to say..
> especially when it contradicts what my medical records report.

> 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
[quoted text clipped - 3 lines]
> to get anyone on my side when such damning things are woven into my
> medical records!!

*** Most of us don't see our own Medical Records. There *have been
people here, though not lately, who also had a diagnosis of pseudo-
seizures.... They **might still be around and can help us here.
But the phrase 'Pseudo-Seizure' does **not mean "Fake Seizures" as
you seem to think? It's also a medical term (usually if they can't
find the source), where the seizure **appears like a Seizure, but
doesn't exhibit the standard symptoms that have been assembled for the
most frequent seizure types over the past 100+ years --> the Sites I
referred to above that describe the 4-5 most common seizures, fit into
the latter, and are behaviours and symptoms that the most common
neurologic damage types produce.
Because your events (unless they've done EEGs and more advanced
tests) show brain waves that appear to be the most common types, the
diagnosis they have so far might be 'parked there' until they find
more symptoms or test results that help idenify what's happening.
That is *especially the case with seizures and likely other severe
medical conditions, as most of the Newer Pills are targeted for
particular causes and seizure types. They can't give you, e.g. my
Tegretol, as it won't help your type of onset and it could make things
worse rather than better.
Until they are able to *identify a cause of your symptoms, *if a
particular pill would work, and which one, will have to wait /

> 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
[quoted text clipped - 5 lines]
> it is plain and simply Epilepsy... and now I have had to take steps to
> prove it.

**** But how? Do you have your own MRI ? Some of the tests
(described above) require referral to somewhere that can do the tests,
and if the symtoms you are having don't match the most common seizure
types, they might be looking for a condition that is not causing the
symtoms you are having. /

> 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
[quoted text clipped - 3 lines]
> RECORDS whatsoever to refer to, as it appears my past medical records
> have been transferred to disk.

**** Did you sign a release to send the records from Doctor 1 and
hospitals to Dr. 2? In Canada and the U.S. (?) medical records, and
especially "Mental Health" :-o (which includes MRIs CAT Scans etc.)
need two separate forms to transfer them, that *you have to sign.
Whether the records have been archived or not, doesn't matter, so long
as the hospital or other facilities still have them. Most places are
required to keep them 5+ ? years in case there is recurrence or
complications from the original treatment. I assume it would be the
same where you are ?

I'll leave remainder below, but there's nothing else I could think
of.

*Not being a Dr. I don't know what symptoms would produce effects you
documented on video, since I only know what *my szrs. looked like
(from 1993-7) from witness accounts /family members. Once the deeper
szrs. start (like Complex Partials) we're no longer aware what's
happening, so have to depend on that, or latterly on videos like you
made.
I hope some of above helped, though it's not a diagnosis, or cure,
just comments based on what I learned from 1993 to 7 and Here from
others who participated from late 1997 to now. G./

> 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
[quoted text clipped - 40 lines]
>
> http://www.alex111.350.com/Alexander111.htm

Reply to this Message

Rate this thread: