In comes vEEG

Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

brain

Account Closed
Inactive
Messages
3,450
Reaction score
2
Points
0
I am currently awaiting a call from my Neuro's
Office, they are now trying to determine what
to do here.

While true the 2008 AED drugs are not being
covered under my Insurance Plans and they're
aware of it; and the worse part is - the ones
they're covering are the ones I can't take or
they're afraid to put me on it due to the "family
of ...." (being similar to a drug - ie: Tegretol
and Trileptal are related).

My Primary Medication is getting the ax. It's
the ONLY AED I can take without the side-
effect thats been working; and was now
enabling my Neuro to focus on this other end.

Now they have this NEWS of that my Insurances
are NOT covering it, and I cannot tolerate the
generic due to formulary differences; and for
the Doctor to go on "override" is going to be
rejected, and to go on Formulary Exemption is
also going to be rejected. And I won't be able to
enroll under the Esai Program because I have
the specific Health Insurance that would
eliminate me from being eligible.

They feel so bad for me. It's like having to
start all over again from scratch, but with
what :?:

I've been in tears and they know I'm in a
serious problem now. And they know it.
The Hospital System knows it.

The 2008 is 2 months away.

I could be in for as long as 1-2 weeks, but I
don't even know which Hospital, and I only
assume or if my ex-Epi is going to step in
picture and work together, because we don't
have much time.

:(
 
hugs10.gif


Brain, I don't know what to say! (that's a first) Damned if you do or don't!
 
Awful.... Just awful.

It's amazing how HEALTH Insurance Companies care about our health.
 
Now that insurance company needs a piece of my mind. That is just insanity.
So... they would rather pay for ER and hospitalization over the cost of the med?

Write up a budget plan and submit it to them... maybe the dollars signs will make them rethink their decision.

Crazy healthcare.
 
Sigh.... They say "when it rains, it pours". It's about time for the flooding to stop in your area Sharon.
 
I am on Medicare and Medicaid via my State,
my State assigns me to the plan because I
am also assigned to other benefits through
the State and Government. I fall way below
poverty level and my Doctors knows it.

My Neuro I'm sure is looking at other avenues
as much as possible, because there's not
very many programs available at all for my
"age group". Majority of it is for children or
55 or 65 years and older.

2006 - they put a hood over my head
with all these eliminations and cut backs
where I have to eat a tiny meal a night
and that is my breakfast, snack, lunch,
dinner, everything. At least my AED's only
cost me $1.00

2007 has been a rope around my neck all
year, with the rising cost of utilities and
food - I'm flat broke on the 3rd every month.
and February kills me (being the shortest
month). My AED's fluctuated that year;
it was up and down where I don't know
how much it was going to be the next month!

2008 they now are going to hang me.

I had been on this since 1981. I didn't
enroll, they had me all set up in 1979
when I was in High School!
SSDI, SSI, Medicare, Medicaid, the
Food Stamps, whole welfare kaboodle.

And I've been fighting for years to get
OFF of this! I want to work. I want
surgery, I want something. I want
to be normal.
 
Damnit........

It ain't right....where do I sign?

Wishin' you a break Sharon...I really am!
 
:( I feel your pain brain. I'm also in the double M trap.

You need to fight the system all the way. This B.S. is another to drive a person to the nut house or worse. But if we give up, they win!! I'm also in the surgery way. But my Neurologist is a bit of arse lately. The Neurosurgeon isn't fortunately. So that's something in my favor.

It's very depressing when I hear others say they had a bad day. They whine about having a day full of bad luck. It just makes me wanna smack them a few times as I tell them what bad luck really is. I'd take anyones worst day, if they'd take my bad luck life.

If things get much worse in New York, I think I'll move to Massachusetts. They're supposed to have Universal Health Care there. Or at least something similar. But if I have to I'll just move to Canada.
 
:( I feel your pain brain. I'm also in the double M trap.
But if I have to I'll just move to Canada.

Can I move with you over there?
Wait a minute, the Canadians are down here
now!
:ponder:
They come down here for a maximum 9 months
and have to go back up for 3 months. So I can
"technically" .... not really ever have to leave
Florida!
:idea:
 
Brain,
Lady, I really feel for you. The only thing that got me out of the housing for disabled and gave me half a chance was when I inherited enough $ to disqualify me from food stamps Medicaid and drug coverage under my SSDI. I moved to Tucson planning to start a new life, to write on health issues. My third day there I was in the middle of a 3 car pile up and got a spinal cord injury from which I'm still recovering, nine years later.And that after five years of intensive physical therapy to overcome the remaining paralysis and injuries from my previous strokes and brain surgeries!
That frustration can be so overwhelming but keep on holding on and holding fast! Time to do some brainstorming, Brain. I have heard of programs to help folks get AEDs if they can't afford them. Would the EFA have that information for your area? There may be options and resources you don't yet know about for work, etc. What are you doing now to cope with the stress? Do you know any of the progressive relaxation routines? These can really help you calm your self and keep a grip during these really difficult times.
They also are known to help you raise your seizure threshold which may help counter the effects of all the stress you are under right now, which can lower your seizure threshold.
Have you seen any of the citizen news groups? You could write articles for them. They don't pay much, but it is a possibility for you. You write well, as your many posts demonstrate, so that may be worth a try. If you aren't in touch with them I can send you some links.
There are other possibilities too, kiddo, and there's a large group here for brainstorming.
This link is to an article on slow breathing health benefits and gives some instructions as well.
http://naturalhealthperspective.com/resilience/deep-breathing.html
Hang tough, and consider yourself hugged.
:)
Zoe
 
Last edited:
CAUTION!!! on the Weil breathing exercise number one. The rapid breathing may trigger a seizure, so I suggest anyone with seizures hold off on this one.
 
Last edited:
There is HOPE after all!

This morning, my Original Drug Plan called
to inform me after they had done a research
since I've had them for several years now since
the Drug Plan had come out. And I DO qualify
for their special program; providing that if my
Neurologist / Epileptologist will fill out a couple
pieces of paperwork and fax the scripts to them
but the only flip-side is, it has to be a Mail Order
only. That was their program.

So I called their office, and they were ALL for it!
GO! So I get to keep my meds! And my Zonegran!
And get ALL my meds in the mail. But they need
to get it all done now ahead of time so when
January comes, I won't be "out of meds" and
they will have it all set up and I won't be left
"hanging out there".

HOWEVER <--- notice that word

I might still go in the Hospital for vEEG, I'm not
sure, another Nurse there who I spoke with
before remarked about another AED being added
or possibility the other one being removed and
another one being introduced along with the
Zonegran and Folic Acid I'm on and see if it
makes a difference.


PS: They do not do hyperventilation on me on
EEG's anymore as early EEG's showed it provoked
seizures and caused me to loose consciousness.
And it effects my cardiac system. So they avoid
it altogether.

They only do photo/light tests under a presence
of a Neurologist because it can trigger me to go
into various seizures and I cannot tolerate the
flickering lights, and I've been known to throw up
in those tests, go into CP's, TC's, and all sorts.
So many times it's not activated.

 
Back
Top Bottom