> I am 25 years old and suffer from Temporal Lobe Epilepsy which is
> controlled by Tegratol CR and Vigabatrin. While my siezures are
> controlled well I seem to get axiety attacks and nervous hand tremors.
> While the anxiety attacks are less common the shakes are really
> effecting me and people notice especially when I hold something small
> in my fingers.
I don't have anxiety attacks but often my fingers tremble - in fact they do
most of the time. My hands have always shaken though, it's part of me. My
father's did too.
Why does it bother you that people notice? In fact, how are you so sure that
people DO notice? And if they do, so what? If you noticed that people's
hands were shaking would you think any less of them?
> Now I realise I am very lucky that I am not fitting out still like
> some people but I am finding my general nervous state to be effecting
> my personal life.
It doesn't affect my personal or public life, I still demonstrate in public
and make a point of apologising, laughing, for my tremor. Nobody to date has
been concerned about it.
> Could this be my treatment or my illness causing these tremors? My
> consultant has shown no interest in this and is quite dismissive of
> it.
Perhaps not dismissive, perhaps s/he thinks that it's not as important as
keeping the seizures under control - which is isn't.
If you didn't have the tremors perhaps you might be conscious of something
else which made you less than perfect - your height, weight, skin, hair,
shape of legs or many other things which are difficult to change and don't
matter in the Great Scheme of things. Who do you know who is perfect? Who
doesn't have some real or perceived problem?
I know I sound hard but really, a tremor is not important. A friend of mine
is a Commodore in the Royal Navy. He can't hold a cup and saucer without it
chattering all the time. It hasn't stopped him achieving high rank nor
enjoying his life. He doesn't know what causes it, he's always had it, it's
part of him, like my grey eyes are part of me.
<snip>
> I am simply starting to really beleive that my illness is more than a
> clean case of a siezure or not a siezure.
It IS. I think that no illness or condition has one rigid set of symptoms,
everything has characteristic symptoms but they're not necessarily all there
at the same time and there well may be others which manifest themselves in
some people and not others.
Last night a daughter telephoned to ask me to look on the web for acorn
poisoning in cattle, her vet suspects that a calf might be suffering from
it. I found lots of very good sites - mostly American - and there were very
few symptoms or treatments in common. The only one sure thing was the
prognosis - death. And the only sure diagnosis of the condition is by
autopsy.
Your tremor isn't going to kill you. If you let it worry you your *quality*
of life will suffer. It's up to you to accept this minor symptom and
concentrate on living happily - and being pleased that you're seizure free.
> I think my epilepsy or my
> treatment creates an overall instability of my nervous system. The
> result is that while I am not having sizures I do not feel stable at
> all.
But you're alive! And will be for a long time, I hope. Enjoy it!
I've had some pretty unpleasant side effects from my cancer treatment, one
is a permanent and painful legacy. But hey, while I hurt (and tremble!) I
LIVE!
> Any thought and advice is much appreciated.
I wonder if you will appreciate what I've said ... I'm sorry if you don't,
it was very well meant.
Hugs,
Mary
> Sean.
Sean D - 18 Oct 2004 16:07 GMT
Mary,
Thanks for your reply. I do understand what you are saying and thank
you for your advice. However my reason for my post is not to discuss
how this effects me psychologically or to gain sympathy but to bounce
ideas, hear the experience of others and get advice on how to optimize
the treatment of my disorder to make these horrible secondary symtpons
go away. I am a very possitive person and this is a fact finding
mission for me so I can get myself well and back on form.
My reference to people noticing is more a sign to me of how bad it is
actually getting rather than what people think - most of these people
are my friends and care about my well being.
Some slight tremor is not going to knock me too much. However when
your trying to hold a paint brush (while decorating my room) as I was
doing at the weekend but unable to keep it still, when I woke up this
morning at 6am wide awake having only gone to sleep a few hours
earlier, feeling totally anxious but not knowing why, it gets in the
way - seizures or no seizures.
I generally feel that my nervous system is not fully balanced and a
bit shaky thus the tremors. I am not a person with clinical depression
and believe that these symptoms are either a part of my illness or my
treatment.
I am simply just looking for answers and the medical world seems to
see my condition as just seizures or no seizures.
Sean.
> > I am 25 years old and suffer from Temporal Lobe Epilepsy which is
> > controlled by Tegratol CR and Vigabatrin. While my siezures are
[quoted text clipped - 80 lines]
> >
> > Sean.
Daz_n_Pat - 19 Oct 2004 01:11 GMT
Hi Sean,
I too have tremors like that. I don't have the anxiety attacks unless I'm
trying to do some kind of work that involves a lot of thinking (something I
used to be good at).
I agree whole heartedly with Mary though. Life goes on and even though we
may have some condition or other, we must live our lives to the full and
enjoy every moment of it. There is so much we're able to do that some
cannot.
FYI as far as possible cause of the tremors etc, I'm on Tegretol CR 1200mg,
Epilim 2000mg, Neurontin 1800mg, Clobazam 30mg. I don't know if its the
drugs that cause the tremors and anxiety, though I didnt have these problems
before I had surgery for my right temporal lobe epilepsy, which is still
causing me about 5 Complex Partials every day.
Cheers,
Darryl.
> > I am 25 years old and suffer from Temporal Lobe Epilepsy which is
> > controlled by Tegratol CR and Vigabatrin. While my siezures are
[quoted text clipped - 80 lines]
> >
> > Sean.
Bill X - 19 Oct 2004 16:40 GMT
Hi Darryl,
Sorry to read about your problems. I was indulging in feeling sorry for my
untreated left temporal tumor that's been giving me partial simple seizures
since I started on Dilantin/Keppra combination over a year ago but 5 complex
seizures per day sounds like hell compared to what I've experienced so far.
Glad you've been able to maintain an upbeat spirit. You're an inspiration
for guys like me!
Best Regards, Bill
> Hi Sean,
>
[quoted text clipped - 112 lines]
> > >
> > > Sean.
Daz_n_Pat - 19 Oct 2004 19:41 GMT
Thanks for that Bill.
I used to have between 5 and 10 a day, with occasional clusters of up to 30
in a row, with about 10 seconds break in between, but since my surgery its
reduced to a max of 5 a day. After 30 years....thats almost Heaven to me.
Hope all goes well for you Bill.
Cheers,
Darryl.
> Hi Darryl,
>
[quoted text clipped - 137 lines]
> > > >
> > > > Sean.
> All,
>
[quoted text clipped - 28 lines]
>
> Any thought and advice is much appreciated.
Your description of the tremors sounds like a drug side-effect to me and
you'll find it at
http://medguides.medicines.org.uk/displaypage.aspx?t=medicine&i=47
further down the page.
Are you saying that you have had the tremors only since you started taking
Vigabatrin? If so, it's unfortunate that your consultant isn't taking it
seriously and switching you to a different AED.
Bob
Sean D - 20 Oct 2004 11:48 GMT
Bob,
Thanks for your message. That link was helpful. I had no idea that was
a known side effect of vigabatrin - neither does ny consultant so it
seems as she mentioned nothing of it when I raised my tremor problem
to her.
However the plot thickens.
I used to be absolutely convinced that my treatment was to blame for
the above issues. However I recently went on holiday and didn't bring
enough treatment (Cuba, they couldn't get my treatment even if I was a
millionaire thanks to the the embargo!!). I was stuck and was forced
to go for a period of 5 days with no treatment at all.
MAN did I suffer but it was interesting. The shakes got worse and my
general nervous state was shaky to say the least. It was this that has
forced me to consider that it may be my illness that causes the
problems not the treatment.
However this also created another flip side theory which is that it
could also be withdrawal symptons the same as drinkers and drug users
get. The shakes are a classic withdrawal of an induced chemical right?
Maybe I get the shakes as my body is not topped up enough of my
treatment. Perhaps I am physically addicted to my treatment!
Like for example as I write this I feel great, no shakes no anxiety.
But over the weekend just gone man I felt soooooooo bad. This followed
me taking my treatment extremely late due to a late night on Friday.
Its an interesting theory I think any thoughts.
P.S (No morals are needed about missing treatment and taking it late
please. I regret my patterns of the recent and do not intend to miss
again.)
> > All,
> >
[quoted text clipped - 39 lines]
>
> Bob
Bob - 20 Oct 2004 15:00 GMT
> Bob,
>
> Thanks for your message. That link was helpful. I had no idea that was
> a known side effect of vigabatrin - neither does ny consultant so it
> seems as she mentioned nothing of it when I raised my tremor problem
> to her.
Hi Sean
I've had similar problems with my own doctor.
> However the plot thickens.
>
> I used to be absolutely convinced that my treatment was to blame for
> the above issues.
"above issues"? You top-posted! :-)
> However I recently went on holiday and didn't bring
> enough treatment (Cuba, they couldn't get my treatment even if I was a
[quoted text clipped - 11 lines]
> Maybe I get the shakes as my body is not topped up enough of my
> treatment. Perhaps I am physically addicted to my treatment!
Yes, this withdrawal effect is well known and we are always adviced not to abruptly stop
taking any of these meds. In switching from one med over to another recently, it took me a
period of 3 weeks. Yes, there is a physical addiction.
> Like for example as I write this I feel great, no shakes no anxiety.
> But over the weekend just gone man I felt soooooooo bad. This followed
> me taking my treatment extremely late due to a late night on Friday.
Tiredness & lack of sleep can have that effect. If you used any alcohol it would have also.
> Its an interesting theory I think any thoughts.
Not a theory at all. The effects of sudden withdrawal are expected and well-known.
> P.S (No morals are needed about missing treatment and taking it late
> please. I regret my patterns of the recent and do not intend to miss
> again.)
Doesn't sound like a moral issue to begin with.
Bob
> > > All,
> > >
[quoted text clipped - 39 lines]
> >
> > Bob
Mary Fisher - 24 Oct 2004 18:27 GMT
> Bob,
<snip>
> P.S (No morals are needed about missing treatment and taking it late
> please. I regret my patterns of the recent and do not intend to miss
> again.)
Most of us round here aren't moralistic, we can suffer it from other people
so we don't inflict it on our own kind :-)
I'm sorry to hear that you missed treatments but it sounds as though it's
been a learning experience. Keep us informed?
Mary
>Subject: Temporal lobe Epilepsy and Tremors
>From: private21200@yahoo.co.uk (Sean D)
[quoted text clipped - 6 lines]
>controlled by Tegratol CR and Vigabatrin. While my siezures are
>controlled well I seem to get axiety attacks and nervous hand tremors.
Anxiety is touted to be treated by phytic acid .. natural iron binder /
chelator .. and iron is shown to be involved in epilepsy ..
Acta Med Okayama. 2004 Jun;58(3):111-8. Related Articles, Links
Natural antioxidants may prevent posttraumatic epilepsy: a proposal based on
experimental animal studies.
Mori A, Yokoi I, Noda Y, Willmore LJ.
Okayama University, Okayama 700 8558, Japan. dr-mori@f3.dion.ne.jp
Head injury or hemorrhagic cortical infarction results in extravasation of
blood and breakdown of red blood cells and hemoglobin. Iron liberated from
hemoglobin, and hemoglobin itself, are associated with the generation of
reactive oxygen species (ROS) and reactive nitrogen species (RNS). ROS and RNS
have been demonstrated to be involved in the mechanism of seizures induced by
iron ions in the rat brain, an experimental animal model for posttraumatic
epilepsy (PTE). ROS are responsible for the induction for peroxidation of
neural lipids, i.e., an injury of neuronal membranes, and also could induce
disorders in the excitatory and inhibitory neurotransmitters. Antioxidants,
such as a phosphate diester of vitamin E and C (EPC-K1) and antiepileptic
zonisamide, have been known to prevent the epileptogenic focus formation, or to
attenuate seizure activities in the iron-injected rat brain. Natural
antioxidants, such as alpha-tocopherol, and condensed tannins, including
(-)-epigallocatechin and (-)-epigallocatechin-3-O-gallate, adenosine and its
derivative, melatonin, uyaku (Lindera Strychnifolia), fermented papaya
preparations, Gastrodia elata BI., and Guilingji, have been demonstrated to
scavenge ROS and/or RNS and to be prophylactic for the occurrence of epileptic
discharge in the iron-injected rat brain.
PMID: 15471432 [PubMed - in process]
--------------------------------------------------------------------------
------
Who loves ya.
Tom

Signature
Jesus Was A Vegetarian! http://jesuswasavegetarian.7h.com
Man Is A Herbivore! http://pages.ivillage.com/ironjustice/manisaherbivore
DEAD PEOPLE WALKING http://pages.ivillage.com/ironjustice/deadpeoplewalking