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question about szs
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hawiian_girl11 posted:
Aloha,

Can szs change thru the years or add thru the years?

THe reason I want to know and am asking is because besides the Complex Partials that I have had forever, I am now experiencing Drop attacks. In the last 2 weeks I have had 6 of them 4 of them resuling in injuries.

Mahola,

Nancy
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dancer86442 responded:
Yes, Nancy they can. Mine started as just gran mals. I now have 3 other types. Absence, abdominal & wavy line syndrome.


Love Candi
March 26 Epilepsy Awareness Day Advocate
 
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hawiian_girl11 replied to dancer86442's response:
on the drop attacks I get hurt and get injured.

I have been wearing that helmet even in the house.

I have wiped out 3 times where my head was involved.

I look like some kind of goof in it and get stared at in stores and don't know what to say to ppl when they stare. I feel like saying take a picture it will lats longer but I don't because that is nasty.

what should I say because I get a lot of looks stares and faces from ALOT of people.

it is nothing fancy it is just a regular epilepsy helmet. so I do not know why I get all the ugly attention.

Do any of you have any suggestions on what to do with this situation?

Nancy
 
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hawiian_girl11 responded:
Aloha,

I have had a whole slew of drop szs in the last 3 days then today I have had a T/C and a CPS. I do not see neuro until april 22 should I contact now and try to get in earlier. New drug he wants to put me on does not come out til april 7 and I see him aprril 22.

any suggestions?

Nancy
 
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dancer86442 replied to hawiian_girl11's response:
You should read the article Hooty posted about TBI. Worth reading!


What to do about helmet? Ever think to add decals. You could promote epilepsy awareness &/or add fun stickers/decals. Hold your head High! You Know you are safer w/ the helmet on, so let others' rubberneck. If they ask questions, then be truthful. I have frequent seizure activity & this protects my Head! This ain't Rude & they can take it or leave it.


As for DR visit. Ask to be put on Notification for the First Cancellation.


Love Candi
March 26 Epilepsy Awareness Day Advocate
 
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hawiian_girl11 replied to dancer86442's response:
Aloha,

IAm already on the cancellation list, but my neuro is double booked most of the time. HE usually gives up his luhcn break to see me.

I go in at 8 30 mainland time (mtn time).

I have a neuro in HI that is a headache specialist that I go to for bbotox and headache control but I do not see him until the 24th and hope that this works I go every 90 days. Then I have my regular neuro that treats the epilepsy.

So now I have 2 neuros. THe headache one was Mayo trained in Rodchestor MN. So he knows what he is doing..

I feel stupid having 2 neuros in 2 places let alone in 2 different states.

do other ppl have more than one neuro?

So the 3 docs that I have left in PHX are my TMJ doc in PHX on cave creek rd neuro for ep in Sun City, and ortho in Sun City West. Everyone else is in HI finally.

I will buy stickers that are kiddy and sticky ahd put them on my helmet. But epilepsy helmets look completely different than other helmets. But I will try what you said and see what happens.

I just feel like a freak in public.

Are there other ppl on here that have to where helmets?

Nancy
 
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hawiian_girl11 responded:
aloha Candi,

I am being taken off that anti depressant it is the cause of te Drop attacks. my Pysch is faxing my neuro some stuff today and it will probably wararant a call from their end to mine to find out what is going on.

IT has also changed my deameaner as a person as well, IT has casued a whole slew of things to happen to me that arean't me. Agitation being on top,

So fro all the agitation and everything else negative I have put everyone else on here thru I am sorry I can not help it right now. They are working at getting me off that drug but it is not going to happen until he gets the faxwith everything on it. so it make tiae a good few days.

I long distance phone call and I will probably have to go in an talk to him first.

Nancy
 
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hawiian_girl11 responded:
Aloha,

We have finally figured out what has been causing the Drop Attacks.

I am on an TCA anti depressant that should have never been given to me at all. but because I have been having trouble with Migraines that is one of the older drugs they once used to prevent them. But it is not supposed top be given to people with epilepsy or those with a sz disorder or who have had szs in the past for any reason should not have this drug. IT can cause an OD at any dose or different szs can enter into the picture and so on. In my drug books and my Drug usage for clinical nursing book.

they were looking out for me and did not catch that. But I did and so did my Psych doc and sent a fax of stuff over to my neuro to let him know what is going on.

It has changed me and I do not like myself on it. I only take 30 mgs but psych doc said that because of eveyrthiing else itake not just the EP drugs that 30 mgs can be an OD.

so I am wairing for that phone call to happen and will keep you updated.

Mahola,

NAncy
 
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dancer86442 replied to hawiian_girl11's response:
I hope going Off that anti-depressant does the trick for you, Nancy. But, it may take awhile for that med to get out of your system. So, look into some anti-toxin drinks that can speed the process up. A QT pitcher of Water w/ 1 large sliced red apple & a stick of cinnamon, is what I am drinking Tastes Good! But, there are other fruit/water combinations that may work too. Just use Google or Yahoo Search.


Catch ya Later. Hugs!


Love Candi
March 26 Epilepsy Awareness Day Advocate
 
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hawiian_girl11 responded:
Hi Candi,

One of those Drop Attacks has caused a broken wrist that needs surgery on, MOnday I find out when and what they will be doing for it,

I have torn one tendon and several ligaments as well as fracturing one bone andthat one has pushed the one next to it out of place so that one has to be set,

I will keep you posted.

NAncy
 
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hawiian_girl11 replied to hawiian_girl11's response:
Aloha, Candi.

I am off that Anti-depressant.

I do not know if those Drop attacks are going to be permanent now or if they are sloly going to go away. I do not want to wear theis helmet forever.

What sdo you think?

Nancy
 
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dancer86442 replied to hawiian_girl11's response:
I think I would rather be safe than sorry! Wear the Helmet! It may not be Forever. I have no way of knowing & neither do you! One Day at a Time! If you don't have any more Drop Attacks after 6 weeks or more, than Maybe!


Love Candi
March 26 Epilepsy Awareness Day Advocate


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