Hi Christine
That is why they are very interested in my side of the family as well, because of all the meds. Ep. meds are
almost if not at the top of the list that will cause an attack for sure. It was ok for the testing part here
but takes a very long time as we are in Sask and the test has to go to Ontario, can not be exposed to any
light and be kept at a certain temp every inch of the way which is very hard to do unless you are right there
at the site. For any of the special treatments needed now they are not sold in Canada and have to be brought
up from the States. Maybe should there be more of us with it in our blood whatever...they can get some here.
They told us too the main foundation or where a lot of the research is done etc. is in Whales as that is where
(and UK) most of the cases are (I presume..makes sense)
A person just never knows eh. With A.I.P. it is so sporadic too as you can have it and not have any attacks
during your lifetime. On the otherhand you can have one or two and that is it. Something good to know though
and have on your file so if something should happen at least doctors can go back and not figure you have
appendicitis or some other thing :) or tell you it is all in your head.
Thanks for the website.
Julie
Julie Hope
epilepsyhealth@sasktel.net
http://www.2betrhealth.com
----- Original Message -----
From: "Christine Pickett" <cnpickett76@yahoo.com>
To: <epilepsy@yahoogroups.com>
Sent: Wednesday, July 13, 2011 10:44 AM
Subject: Re: [epilepsy] Seizures and Epilepsy
Hi,
That is one of the things they thought mine could be but my insurance canceled me before they could do further
testing. I did find some really good information on the Porphyria foundation's website. From what I found
people with this have a lot of drug sensitivities and many react badly to most drugs prescribed for seizures.
They have links to lists of drugs to be avoided, available treatments, and one of the side links goes to where
to get the DNA tests. It is expensive for the first one but once it is detected I think it was $150 for family
members up to 5 or seven people.
I hope it helps.
http://www.porphyriafoundation.com/about-porphyria/types-of-porphyria/AIP
Christine
--- On Wed, 7/13/11, Julie Hope <epilepsyhealth@sasktel.net> wrote:
From: Julie Hope <epilepsyhealth@sasktel.net>
Subject: Re: [epilepsy] Seizures and Epilepsy
To: epilepsy@yahoogroups.com
Date: Wednesday, July 13, 2011, 12:13 PM
Morning Christine
Yes I am. Our granddaughter which we know now for sure that is what it is does not have the seizures yet.
Our daughter had the seizures as well as all the other symptoms but nobody knew and wasn't tested then. Out of
the 3 types, both have the stomach pains type and lose of muscles in either legs or arms. Daughter went
paralyzed in legs and gdaughter it is her arms that have the funny feeling.
Julie
Julie Hope
epilepsyhealth@sasktel.net
http://www.2betrhealth.com
----- Original Message -----
From: "Christine Pickett" <cnpickett76@yahoo.com>
To: <epilepsy@yahoogroups.com>
Sent: Wednesday, July 13, 2011 9:31 AM
Subject: Re: [epilepsy] Seizures and Epilepsy
Hi Julie,
A.I.P.? Are you talking about Acute Intermittent Porphyria?
Christine
--- On Wed, 7/13/11, Julie Hope <epilepsyhealth@sasktel.net> wrote:
From: Julie Hope <epilepsyhealth@sasktel.net>
Subject: Re: [epilepsy] Seizures and Epilepsy
To: epilepsy@yahoogroups.com
Date: Wednesday, July 13, 2011, 12:04 AM
Hi Susan
I think Steve has given you a good answer there...also there are many other health conditions that do have
seizures as one of their symptoms. Take for example diabetes, autism and many other sometimes hereditary
diseases where our cells get all messed up. Right now our family is going through a family tree to try and
find the root for A.I.P. which is and not heard of that often. Have a granddaughter that has and our daughter
died at 33 with exact same symptoms and autopsy of course saying heart. She too had dig. of Epilepsy...This is
one reason they like to take as many tests as possible and don't be discouraged or saddened if the tests come
back negative as many do. They are only trying to rule out other possibilities.
Julie
Julie Hope
epilepsyhealth@sasktel.net
http://www.2betrhealth.com
----- Original Message -----
From: "Susan Wain" <susan.wain@yahoo.com>
To: <epilepsy@yahoogroups.com>
Sent: Tuesday, July 12, 2011 4:28 PM
Subject: [epilepsy] Seizures and Epilepsy
Do U necessarily have to have epilepsy if U have seizures?
From: Julie Hope <epilepsyhealth@sasktel.net>
To: epilepsy@yahoogroups.com
Sent: Tuesday, July 12, 2011 1:10 PM
Subject: Re: [epilepsy] sad 4 of july
Hi Susan
I just had to pop in here and say good morning - sun is shinning here but it is mighty hot out so am staying
inside. I most definitely know what you are thinking, but glad to see you are letting it all out. The
feeling of failing in everything you do can be the worst feeling ... but it can also make your seizures worse
(at least it did mine). I had the grand mal (with every other type before hand leading up to it) and until I
finally said to myself 'to heck with them, I don't need to drive right now it will come when meant to, and all
the other things that bothered me' I was a total wreck. What happens it is just like a balloon that bubbles
up in our gut and we hold everything in. One of these days it has to let go and the air finally lets go
whether it is slowly not.
All my life even in the deep foggy world I was in, I sure knew if someone said 'you can't do it/let me do it
for you so you don't hurt yourself/did you take your meds this a.m. (that was a big one that I hated the
most)/you can't get a job so don't even bother trying....all these things are hurtful to us and lower our self
esteem so much.
I called it being in myself being stubborn and one day just spoke my mind. Even though my hubby did not say
anything at the time, said later he was so proud of me. They really do mean the best for you and sometimes
this is the only way they can show their concern.
So remember you are NOT failing your hubby nor co workers...sometimes they just need a little more education.
Keep that big rainbow of smiles on your face there and take care.
((((Hugs))))
Julie
Julie Hope
epilepsyhealth@sasktel.net
http://www.2betrhealth.com
----- Original Message -----
From: "Susan Wain" <susan.wain@yahoo.com>
To: <epilepsy@yahoogroups.com>
Sent: Monday, July 11, 2011 4:13 PM
Subject: Re: [epilepsy] sad 4 of july
I can relate as I feel that I am failing my husband and co workers when I have aura seizures. I'm on meds but
will be goign in the hospital soon to get monitored 24/7 for a week and hopefully they will figure out Y, at
age 47 I started getting seizures. I cant drive yet and I feel like a failure
From: Mimi <mimiq_69@yahoo.com>
To: epilepsy@yahoogroups.com
Sent: Sunday, July 10, 2011 9:54 PM
Subject: [epilepsy] sad 4 of july
I was excited to celebrate the 4th with my family.It is visually alot of fun for everyone.Out of the blue I
had a seizure and have been racking my brain as to what I could have done to cause it.Gayle was in the kitchen
and asked me a question.Hearing no answer she came out to check on me.Mind you there was 2 other people in the
room.Neither one letting her know I was having a seizure.I guess she asked why she wasn't told i was having
one. She remained calm for me but was scared and mad at michelle. I came out of it and cried.Told Gayle and
rob I was tired.I was put in the bedroom to sleep for 2 hrs.All I wanted to do was cry .I feel I failed my
family.
I cant watch parade with flashing lights or fireworks unless they are still forms(pictures)
Sorry for my feelings today
Mary D
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