Hi Elizabeth
Yes I agree with you, read my previous message to Susan, mum
was reading the information on the healthboards on lanactoal
and she was not impressed either, it is her who has to care
for me so I have to take her views in to consideration too.
Regards
Adrien
-----Original Message-----
From: epilepsy@yahoogroups.com
[mailto:epilepsy@yahoogroups.com] On Behalf Of Elizabeth
Quinn
Sent: 31 May 2012 02:15 AM
To: epilepsy@yahoogroups.com
Subject: Re: [epilepsy] Some advice wanted on my seizure
yesterday
Don't count your doctor out entirely--mine have always given
me what the side effects will be, what to expect,
etc...Remember, their patients report back what's happening
to them as well. Plus, they have to know a lot--they are
doctors!! I have never received useful advice from a
pharmacist, even though they receive specific training on
pharmacology.
And...you also have to be your own best advocate.
www.askapatient.com is a great website where anyone can go
leave their side effects, how the drug is working, etc...
And if you're trying to figure out what to expect, just go
and check out everyone else's experiences.
If you're not sure why the doctor is giving you something,
ask. Or ask what the side effects will be before you fill
the script.
elizabeth
----- Original Message -----
From: Susan Wain
To: epilepsy@yahoogroups.com
<mailto:epilepsy%40yahoogroups.com>
Sent: Wednesday, May 30, 2012 5:01 PM
Subject: Re: [epilepsy] Some advice wanted on my seizure
yesterday
The best thing to do is to talk to your pharmacist! They
know more than the doctor about meds! I was on Depakote and
what a nightmare! I had hallucinations that were close to
aura seizures, I lost most of my hair, and couldn't sleep.
PLUS I was still having seizures. Once I switched to
Trileptol I was fine.
________________________________
From: Adrien Collins <adriencollins22160@googlemail.com
<mailto:adriencollins22160%40googlemail.com> >
To: epilepsy@yahoogroups.com
<mailto:epilepsy%40yahoogroups.com>
Sent: Wednesday, May 30, 2012 9:34 AM
Subject: RE: [epilepsy] Some advice wanted on my seizure
yesterday
Hi
I have been given lanactoal but gut instinct tells me I
don't need it, mum and I have been looking it up on the net
and I am definitely not going to take it but I just would
like to hear if I am doing the right thing. I am not
impressed or encouraged by the large list of side affects or
the fact that it could interact with my tegretol which until
now has been working ok. I think I myself should know but I
also know that I have to lose some weight and exercise a bit
more, whether or not these will help me I don't know but I
would feel better if I lost some weight not that I am too
heavy but could do with loosing a few kiloes. Being that I
am in a wheelchair, it is difficult for me to exercise but
every little helps.
Regards
Adrien
-----Original Message-----
From: epilepsy@yahoogroups.com
<mailto:epilepsy%40yahoogroups.com>
[mailto:epilepsy@yahoogroups.com
<mailto:epilepsy%40yahoogroups.com> ] On Behalf Of Andy
Swarbrick
Sent: 29 May 2012 09:02 PM
To: epilepsy@yahoogroups.com
<mailto:epilepsy%40yahoogroups.com>
Subject: Re: [epilepsy] Some advice wanted on my seizure
yesterday
I wish our Jane had been able to have a review. It was
something she
put off, and put off...
xx
Andy
http://www.forjane.co.uk/ - Fighting SUDEP. Donate Now:
http://uk.virginmoneygiving.com/team/ForJane
On 29 May 2012 19:56, Adrien Collins
<adriencollins22160@googlemail.com
<mailto:adriencollins22160%40googlemail.com>
<mailto:adriencollins22160%40googlemail.com> > wrote:
> Hi
>
> Just wanted to let you know that I now have my review
booked
> for the 15th of June, I went to see my doctor and he rang
> and got me an appointment strait away with the
neurologist.
> He has also put me on another medication to work along
side
> the tegretol, I have to get it from the pharmacist, will
> keep you posted.
>
>
> Regards
>
> Adrien
>
>
> -----Original Message-----
> From: epilepsy@yahoogroups.com
<mailto:epilepsy%40yahoogroups.com>
<mailto:epilepsy%40yahoogroups.com>
> [mailto:epilepsy@yahoogroups.com
<mailto:epilepsy%40yahoogroups.com>
<mailto:epilepsy%40yahoogroups.com> ] On Behalf Of Susan
Wain
> Sent: 24 May 2012 12:05 AM
> To: epilepsy@yahoogroups.com
<mailto:epilepsy%40yahoogroups.com>
<mailto:epilepsy%40yahoogroups.com>
> Subject: Re: [epilepsy] Some advice wanted on my seizure
> yesterday
>
>
>
> It sounds like some of my panic attacks that get real
> intense! Things smell stronger and stranger and U get de
> javu
>
> ________________________________
> From: Adrien Collins <adriencollins22160@googlemail.com
<mailto:adriencollins22160%40googlemail.com>
<mailto:adriencollins22160%40googlemail.com>
> <mailto:adriencollins22160%40googlemail.com> >
> To: epilepsy@yahoogroups.com
<mailto:epilepsy%40yahoogroups.com>
<mailto:epilepsy%40yahoogroups.com>
> <mailto:epilepsy%40yahoogroups.com>
> Sent: Wednesday, May 23, 2012 1:49 PM
> Subject: RE: [epilepsy] Some advice wanted on my seizure
> yesterday
>
>
>
>
> Hi Elizabeth
>
> Ok about your szs, they sound very familiar, yes I have a
> doctor's appointment for early next week, I need to get
this
> checked in to, something is changing. I haven't seen a
> doctor for my eyes for 7 or 8 years, there is little they
> can do but it is clear to me that things are changing, I
> have had ep for so long but it doesn't mean that it should
> be forgotten. Today, not for the first time, I had a kind
of
> flash back, I had just moved away from the sink after
> cleaning my teeth, my head started to swim, it was like I
> was seeing pictures. I spoke to someone at the
encephalitis
> society and he thinks it is definite brain activity, not
> sure what. It was like I was have millions of pictures
> whizzing through my head, because I am blind I can't see
but
> the signals are getting through and are not being
translated
> but this may be the build up of signals kind of escaping,
> really puzzling. I have had it several times over the last
> few years. It only lasts for a minute or less.
>
> Regards
>
> Adrien
>
> -----Original Message-----
> From: epilepsy@yahoogroups.com
<mailto:epilepsy%40yahoogroups.com>
<mailto:epilepsy%40yahoogroups.com>
> <mailto:epilepsy%40yahoogroups.com>
> [mailto:epilepsy@yahoogroups.com
<mailto:epilepsy%40yahoogroups.com>
<mailto:epilepsy%40yahoogroups.com>
> <mailto:epilepsy%40yahoogroups.com> ] On Behalf Of
Elizabeth
> Quinn
> Sent: 23 May 2012 03:22 AM
> To: epilepsy@yahoogroups.com
<mailto:epilepsy%40yahoogroups.com>
<mailto:epilepsy%40yahoogroups.com>
> <mailto:epilepsy%40yahoogroups.com>
> Subject: Re: [epilepsy] Some advice wanted on my seizure
> yesterday
>
> Hi!
>
> That sounds like my classic seizures. Sometimes I feel
> queasy, sometimes not. But I usually have some
concentration
> issues, feel like something's off, etc... Light can also
> bother me (like filtering) and has triggered seizures. I
> would call your doctor and let him/her know what happened.
> It may just be a fluke, especially if you're not really
> stressed, you've gone to bed on time, etc.. But maybe you
> need a med change. I wouldn't totally discredit the light
> this time. If it keeps happening though, I agree--go see a
> doctor, which I assume you already do for your eyes.
>
> elizabeth
>
> ----- Original Message -----
> From: Adrien Collins
> To: epilepsy@yahoogroups.com
<mailto:epilepsy%40yahoogroups.com>
<mailto:epilepsy%40yahoogroups.com>
> <mailto:epilepsy%40yahoogroups.com>
> <mailto:epilepsy%40yahoogroups.com>
> Sent: Tuesday, May 22, 2012 12:53 PM
> Subject: [epilepsy] Some advice wanted on my seizure
> yesterday
>
> Hi
>
> Yesterday I had one of my regular epileptic storms, I felt
> ok the day before but I have been thinking back and the
> build up to this seizure have been obvious, stroppy,
> irritable, impatient, and others. I lost concentration,
> focus, and I had a muzzy head most of the day. I also felt
> queasy most of the day which is unusual for me. Also, when
> the sun comes round to my side of the house, it is very
> bright and the bright lights seem to aggravate me. Not
only
> when I had the seizure but other times. I spoke with the
> epilepsy action earlier on and they suggest that the
bright
> lights may be caused by something else. What do you guys
> think about this? I am blind so I can't see but when I
face
> any bright or flashing lights such as when you are driving
> along the road and you pass trees and the sun is
flickering
> between the trees, I can't look at the light. I just need
to
> know what this may be. My eyes work even though I am
blind,
> it is the brain that is damaged.
>
> Regards
>
> Adrien
>
> [Non-text portions of this message have been removed]
>
> [Non-text portions of this message have been removed]
>
>
>
>
>
>
>
> ------------------------------------
>
> Just a friendly reminder: Please remember to sign your
post and remember to clean up messages when you reply to
them. This is especially important if you are on digest.
This not only helps out the list owner but, it makes
messages much easier to read when they arrive in our
inboxes.
>
> Yahoo! Groups Links
>
>
>
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