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Medical Forum / Diseases and Disorders / Epilepsy / March 2006

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Thank you all so much, and a couple of other questions

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vburke@gmail.com - 27 Mar 2006 14:18 GMT
I cannot thank you enough for taking the time to reply to my initial
post and provide me with support and information.  Julie, the info on
your site is great and I've forwarded it on to the rest of the family.

Steve came home on Saturday night and has had no issues (other than
fatigue, but his body is still healing).  I was a nervous wreck and
still am.  I'm trying to strike a balance between keeping a close eye
on him and not treating him like an infant.

The &*(&*( doctors released him with NO instructions.  Thank God for
you guys and the internet or I would have no idea what to do if he has
another seizure.  The neurologist didn't tell him much either (I was of
course walking into the hospital when she left) or he doesn't remember.
I'm going to call her today with a list of questions.

My big fear isn't him just having a seizure, which I'm of course
terrified about (I didn't handle that first one well, but I hope that
I'll be able to be calm for another one as it won't be so shocking),
but he went into Status twice and that's what terrifies me.  I feel I
cannot leave him alone for more than a few minutes.  I can tell that
he's annoyed that I feel I have to call a sitter when I have to run a
quick errand.

The EEG didn't show anything -- but they didn't get a readable EEG
until 4 days after the seizures.  I know they'll do more tests at the U
of Chicago next month.

They sent him home on Lamictal 150mg 2x day.  I'm playing Nurse Vicki
and controlling all his meds because I fear he's going to forget to
take them or that he has taken them.  I bought a good weekly dosing
thing.  Yes, his short term memory is definatly affected.

We signed up with Medic Alert yesterday and should receive his bracelet
in a day or two.  THat seems like a great service.  Do any of you have
that data key that they sell?  Supposedly you can put all the records
on there, even MRIs!

Steve's Mom seems to think that we can still go to Jamaica in May.
Obviously I'll ask the Dr. but I have real concerns about him flying,
particulary that far.  What if he goes into status on the plane?  She
switched hotels to one in Montego Bay because Negril doesn't have a
hospital but still, I have real doubts about taking him to a hospital
outside of the US (well, in Jamaica)

I'm hoping to get into the Epilepsy Foundation fo Chiago this week or
next.  I had emailed them but didn't ge a reply yet.

Thanks everyone.

Vicki
G. - 27 Mar 2006 18:15 GMT
I haven't seen the M.Alert key advertised up here (yet) in Canada, but
expect? that the data might change often enough as we adjust to a new
condition that some of the stuff might? become obsolete or need
constant updating?
  The main value I had from mine is their file had Home and Business
phone numbers of my Family contacts, plus *Doctors numbers plus emerg.
phone numbers listed on their file, so when someone called Collect from
anywhere in the world, they could be contacted from where ever I was.
  My local chapter (Toronto) Ep. Association had First Aid for
Seizures instructions similar to Julie's First Aid Idaho site on their
business cards. So I had 2 Plastic Coated and put one in my wallet and
one in my Daytimer (Pocket calendar I carry), with the Red "First Aid
for Seizures"  where someone would find it, if they were looking for
ID.
  I think Medic Alert file needs their bloodtype for the file in case
it was needed, if you hadn't sent it already (I had to make a 2nd trip
to Dr. to get that). They also keep Medications (lamictal in your case)
on file, but *not doses, as those can change, so a Dr. doesn't give any
treatments that would compromise that.
 My only 2 concerns about flying at the time were 1. being in an
enclosed environment (I took some books), and  2. whether Air Pressure
changes would affect me.  (I was sensitive to Rain or storm fronts
moving in and got auras and headaches before they arrived from the Drop
in Pressure. )    Even though I was stable when I flew from 2000 feet
here to Sea Level, I didn't have any effects from that-- I might have
been stable by then. Perhaps someone can comment if that applied to
your type of seizures.

  I haven't used Lamictal, but others around here have written about
it. Perhaps some of them can post (here) if there are any things to
watch with it.  (Usually alcohol should be reduced or Removed with many
of the AEDs to not conflict with them.  Some cold medications might
also contain alcohol, but a pharmacy could tell you down there, if any
would be a problem and if you needed any medicines for other reasons.)

  Heck,  The Sun might be therapeutic !!  Need someone to carry your
Bags ?   :->   G./

P.S. This is not medical advice, but you could ask the Dr. if e.g.
Ativan (Lorazepam 1mg) *sublingual tablets would be any use for *his
type of seizures?  If he gets an Aura or feeling ahead of an onset,
that tablet goes under the tongue and dissolves into the bloodstream.
It's a relaxant, about size of a saccharine pill, and I used to sleep
soon after using it. They don't work for *all types of szrs., and could
become addictive if over-used, but *I found it a valuable bridge while
I was getting control (on the ground), when moving from Dilantin to
Tegretol + later another med. with the Tegretol. I only used about 10
over 4+ months at the time.
I also don't remember his Age -- that would only be used with an
Adult. But if you have to talk to the Dr. about other things, you could
ask if those might give you some more security while you're out of the
country.
 (On the Flight, *Take the prescription Scripts from the Pharmacy, as
well as Pill Bottles in Original condition, so any can be seen by
inspectors if they need to see they're valid prescriptions.  *I always
took mine in my Carry-on Cases -- saves trouble if your suitcases goes
to Greenland while You're in Jamaica... !!  G./
Julie - 28 Mar 2006 00:04 GMT
> I cannot thank you enough for taking the time to reply to my initial
> post and provide me with support and information.  Julie, the info on
> your site is great and I've forwarded it on to the rest of the family.
So pleased to be of help.  Today I spent several hours helping the
Epilepsy Foundation of Idaho with their transfer to a new internet
service.  Since I am drugged right now, I'm not driving, but I felt good
because I got EFI on the phone and then called our hosting company.  I'm
not sure which country we were communicating with, but he did an
excellent job.

> Steve came home on Saturday night and has had no issues (other than
> fatigue, but his body is still healing).  I was a nervous wreck and
> still am.  I'm trying to strike a balance between keeping a close eye
> on him and not treating him like an infant.

Oh, yes the fatigue and all your muscles ache.  I call it the "been hit
by a mac truck feeling" ;-)

> The &*(&*( doctors released him with NO instructions.  Thank God for
> you guys and the internet or I would have no idea what to do if he has
> another seizure.  The neurologist didn't tell him much either (I was of
> course walking into the hospital when she left) or he doesn't remember.
>  I'm going to call her today with a list of questions.

I am going to try to mention this to my doctor when I see him next
month.  The plan is for me to design his website.  I'm sure he would be
interested to hear of patients leaving hospitals without instructions.

> My big fear isn't him just having a seizure, which I'm of course
> terrified about (I didn't handle that first one well, but I hope that
[quoted text clipped - 3 lines]
> he's annoyed that I feel I have to call a sitter when I have to run a
> quick errand.

I would talk to your doctor about the status question.  I think I would
have the same concerns, especially since it doesn't sound like they have
a good handle on WHY he had a seizure.

> The EEG didn't show anything -- but they didn't get a readable EEG
> until 4 days after the seizures.  I know they'll do more tests at the U
> of Chicago next month.

Are they planning a sleep deprived EEG?

> They sent him home on Lamictal 150mg 2x day.  I'm playing Nurse Vicki
> and controlling all his meds because I fear he's going to forget to
> take them or that he has taken them.  I bought a good weekly dosing
> thing.  Yes, his short term memory is definatly affected.

Controlling the meds is a very good plan.  I think I mentioned that I am
 in the process of switching meds.  So I am trying to be very careful
to take the right amount of both the med I'm going off and the new med.
 The other day I scared myself.  I went to take my morning pills.  I
had pills in my hand and the water glass in the other hand, I was ready
to pop those pills down my throat when I looked at my hand and realized
I had phenobarbital.  That is part of the meds I take at night.  I would
have really overdosed if I had taken those in the morning.

> We signed up with Medic Alert yesterday and should receive his bracelet
> in a day or two.  THat seems like a great service.  Do any of you have
> that data key that they sell?  Supposedly you can put all the records
> on there, even MRIs!

I haven't signed up with Medic Alert.  I used to have a medical
bracelet, but I lost it.  I guess I should get another one.

> Steve's Mom seems to think that we can still go to Jamaica in May.
> Obviously I'll ask the Dr. but I have real concerns about him flying,
> particulary that far.  What if he goes into status on the plane?  She
> switched hotels to one in Montego Bay because Negril doesn't have a
> hospital but still, I have real doubts about taking him to a hospital
> outside of the US (well, in Jamaica)

Personally I would be afraid to go, but then I've had bad experiences on
airplanes.  Maybe you need to see how things go at the Chicago Epilepsy
Center.  Your hubby could be ready by May, but the doctor's would
probably have a better idea of what you are dealing with.  Another
question to ask, if you do need a hospital outside of the US, does your
insurance cover it?

> I'm hoping to get into the Epilepsy Foundation fo Chiago this week or
> next.  I had emailed them but didn't ge a reply yet.
Hope you hear from them soon, Vicki.

Please keep us all informed.  We like to know how the newbies are doing.

Take care,
Julie

> Thanks everyone.
>
> Vicki
 
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