A Trigger for Me

Over the past couple weeks we have had the strangest weather here in Sask.  The heat and the humidity alone could set off warning signs for a seizure.  Ah ha I missed it all this time, it just couldn't catch me.

I hate in some way to admit how much I love watching electrical storms.  I guess in some small way I see my daughter (who is no longer with us) in each lightning strike reaching down for me.  More than not she is telling me to get inside as she died in her sleep on hospital bed with Epilepsy also.

This past week has been full of strange full blown thunder storms with happenings that you just can't take your eyes off long enough to pick up the camera.  Threatning or warnings of tornadoes in our community. Several have already caused havic around us yet we stayed safe. 

I have always been intrigued by weather changes and what happens inbetween.  Have you taken a look at your diary and noticed that you have only had seizures of any kind during a certain season?  It does sometimes happen.  The summer is a bad one for me.  There is not only the heat and the storms.  There is also all the things floating around in the air, the pollen is flying around everywhere stuffing up those sinus areas or being allergic to some of it.  Bring down your immune system and the seizures are free to come in.

This is a big trigger for me too.  Possibly not as big as others but it is still one to watch for even though nature is there and there is not much a person can do about a thunderstorm happening with bright lights flashing, nor letting down our immune system with the smell of pollen in the air during the summer.  Some of these we just can not do much about.

Other triggers like eating properly, getting a good nights sleep, and making sure you take your medications as prescribed and on time, learning ways to keep the stress down we can control. 
STAY HAPPY is one way.  Life will go on.
Julie

What If I Am Not Be Able to Afford My Meds.

 

As searching the internet I came across something that could be of great use to many.

With the worlds economy today and a lot of us needing medications some that we can not afford, this could be one way to overcome it.  Besides this list I am sure there are other ways as well.  We can not go or miss a medication even though we wish we could some days. 

We can also do other things to help.  I recall when I was on a whole bundle of meds, some of them not even necessary as same med with different name and all doing the same chore.  This does not necessarily help but hurt the problem. 

It is now summer and another thing we can do is make sure if outside in the hot sun, to wear the proper gear.  A hat, glasses and make sure you have access to that water bottle as you could get drained very quickly.

This is a long list so will leave you hear.  Have a great Purple Power weekend, seizure free yet fun and laughter can go with you.

Julie

 

What if I cannot afford my epilepsy medication?

In these tough economic times, everyone is having to make some cut backs.  For some, that may mean skipping an evening out a restaurant, or not buying that new pair of shoes. But what if that means your epilepsy medications?  One medication alone can be quite costly, and often time people are prescribed more than one, which means the cost can really add up.  An important component of seizure management is taking your medications regularly, and exactly as prescribed by your epileptologist or neurologist, without missing doses.  But what if you simply cannot afford the costly monthly payments? Should you simply give up and not take the medication you need?  No!! There is help, if you know where to look!
One of the first options is to contact the pharmaceutical company that makes your particular medication.  Many pharmaceutical companies offer what are known as “prescription assistance” programs, which may include reduced costs, coupons, or even free supplies.  Below is a list of some of the most common brand name anti-epileptic drugs and their corresponding pharmaceutical companies.  If you are currently prescribed one of these medications, try contacting the associated program to see if you qualify for help.
Acthar Gel (ACTH)
Questcor Pharmaceuticals
http://www.questcor.com/
(888) 435-2284
Banzel
Eisai Neurology Patient Assistance Program
http://www.rxassist.org/
(866) 694-2550
Carbatrol
Shire Pharmaceuticals Carbatrol Patient Assistance Program
http://www.patientassistance.com/
(888) 227-3755
Depakene, Depakote, and Depakote ER
Abbott Patient Assistance
http://www.depakoteer.com/
(800) 222-6885
 Diastat AcuDial Rectal Gel
Valeant Pharmaceuticals Patient Assistance Program
www.rxhope.com/valeant
(800) 511-2120
Dilantin
Pfizer Helpful Answers
http://www.pfizerhelpfulanswers.com/
(800) 707-8990 or (866)706-2400
Felbatol
Meda Pharmaceuticals Patient Assistance Program
http://www.medapharma.us/ or http://www.felbatol.com/
(800) 678-4657 or (800) 526-3840
Gabitril
CephalonCares Foundation Patient Assistance Program
http://www.cephaloncares.com/
(877) 237-4881
Keppra, Keppra XR 
UCB Patient Assistance Program
http://www.patientassistance.com/
(866) 395-8366
Lamictal and Lamictal XR
GlaxoSmithKline Bridges to Access
http://www.bridgestoaccess.com/
(866) 728-4368
Lyrica
Pfizer Helpful Answers
http://www.pfizerhelpfulanswers.com/
(800) 707-8990 or (866)706-2400
Mysoline
Valeant Pharmaceuticals Patient Assistance Program
www.rxhope.com/valeant
(800) 511-2120
Neurontin 
Pfizer Helpful Answers
http://www.pfizerhelpfulanswers.com/
(800) 707-8990 or (866)706-2400
Sabril
Lundbeck’s SHARE Call Center
http://www.lundbeckshare.com/
(888) 457- 4273
Tegretol, Tegretol XR 
Novartis Patient Assistance Foundation Program
http://www.patientassistance.com/
(800) 277-2254
Topamax
Johnson & Johnson Patient Assistance Foundation
http://www.jjpaf.org/ or http://www.access2wellness.com/
(800) 652-6227 or (800) 523-5870
 Trileptal
Novartis Patient Assistance Foundation Program
http://www.patientassistance.com/
(800) 277-2254
Vimpat
UCB Patient Assistance Program
http://www.patientassistance.com/
(866) 395-8366
VNS Therapy Access Program
http://www.cyberonics.com/
(877) 610-1180
The B.J. Wilder VNS Therapy Access Program (VTAP)
1-877-610-1180
Zarontin
Pfizer Helpful Answers
http://www.pfizerhelpfulanswers.com/
(800) 707-8990 or (866)706-2400
Zonegran
Eisai Neurology Patient Assistance Program
http://www.rxassist.org/
(866) 694-2550

If your prescription is for a generic medication, such as the ones listed below, contact:

Carbamazepine, Clonazepam, Clorazepate, Diazepam, Divalproex, Gabapentin, Lamotrigine, Lorazepam, Levetiracetam, Phenytoin, Phenobarbital, Topiramate, or Zonisamide

 Express Scripts Specialty Distribution Services
Rx Outreach Medications
(800) 769-3880
Or
Xubex Pharmaceuticals Patient Assistance Program
http://www.xubex.com/
(866) 699-8239

If your medication is not listed here, or you contacted the pharmaceutical company and where not able to obtain assistance, do not give up hope. Here are a few other options you should try:

Information on available patient assistance programs: 
http://www.together-rx.com/
 Information on patient assistance programs for each medication: 
http://www.pparx.org/ or https://www.rxhope.com/
For those who cannot afford their prescription medications:
http://www.needymeds.org/
http://www.patientassistance.com/
Email:mailto:info@rxassist.org
 Partnership for Prescription Assistance 
http://www.helpingpatients.org/

Although this list is not exhaustive, it goes to show that there are a large number of possible options out there.  So, if you do not have luck with the first program you call, do not get discouraged!  Look around, call all of the general program above, contact your local government, even your church.  There are many people and programs out there who want and can help, but first, you have to ask! Good luck!!

How a Beautiful Holiday can Be Really Refreshing

Just back from a one week holiday with our granddaughter and family.  Lots of kids, lots of grand kids, lots of great grand kids. Georgous setting out in the country on a huge farm, so super relaxing yet lots to do and see.  Out every a.m. and p.m. to feed the chickens, fishing, going for quayd rides, you name it we did it.

Thought of the day, I went to get my 1st night meds out, oh oh no matter how hard I looked, I could not find my generic Tegretol. Was sure the bottle was left behind at home.  I could not get it now as we were a good 8hr from home. Only thing left to do and I must tell you that brain of mine is smart at times, I went to sleep totally relaxed and just told it that everything was going to be just fine.  How could it not.

Woke up the next a.m., no seizure, feeling great and ready for the day ahead. I did find my med that day by accident.  It just showed me how total relaxation made my holiday the best week I could ever have. 

Even though a lot of work to do out in the country and away from the excitement, hussle and bussle of the rest of the world, it was at the same time that relaxation and serenity I needed to make me want to retire on a place like that.

Med or no Med I am just fine or in fact couldn't be better.

My daughter a photographer,

played with the original farm we were at.  In the second floor the what looks like a person in the window, is really a shadow.  Looks like a ghost.  :)

Happy and Healthy Purple Day