Archive for February, 2014
Many of my old readers know this story but they still might be interested in this disaster for me a second time! It might destroy all of the hard work my Neurologist and I have been working on for six months now. Intensive and over the top levels of two of my other Anticonvulsants–plus the one I lost. The doses are SO high, people think it’s practising irresponsible medicine.
No. It’s been the last and only chance. Throwing a dart at the board blindfolded.
To everyone’s surprise, I have been seizure free since the beginning of August. Here, it is mandatory for a doctor to report even one seizure so that a person can no longer drive. If you have zero for a year, you can drive again. I know I’ll make a full year. Unless this happens?
The drug I “lost” and had to quit cold turkey was called Clobazam. You NEVER quit a drug cold turkey unless it is a medical emergency AND under medical supervision. I had no choice. For the first time ever in my life, I was told drug manufacturers could no longer supply pharmacies with certain medications. I had never had a problem with that in my life.
Losing the Clobazam damn near killed me. It completely eroded me physically and mentally because first it was gone. Then, when I could finally resume taking the drug, it had lost some of its efficacy. Thus, I remained undermedicated until last July when we slowly started to fix me up with massive quantities of Anticonvulsants.
There is also a VERY important note I would like to express here. In fact, pound it into every doctor who believes in substitutions for Clobazam and possibly other medications. Big Pharma and the Government will come later.
Clobazam falls under the category of Benzodiazepines. However, it is a specialized one. It is one to treat epilepsy and epilepsy ALONE. Every Neurologist and even Pharmacist knows this fact. Moreover, it is SO specialized, it is primarily used for Catamenial (occurring during Menses) epilepsy and migraines.
If I lose this drug again, it might not work for me ever. Again.
So, there is some background material. Why is it so relevant? I would now like to draw your attention to some very important reading. You might not care to read it as it’s rather devastating to me. The links occur in a chain-like fashion. That’s how I’m going to end this with Big Pharma and the Government. If you don’t pause to look at everything, the chain of discussion could perhaps lose sense.
Epilepsy Ontario is a wonderful site. I’ve actually written for them but don’t let that mean I am biased. They also have a wonderful Newsletter you can subscribe to if you’d like, their website is chock full of information. Due to this, I might be able to re-work my last piece I couldn’t write before!
Nonetheless click on that link. That now has me quivering in my boots. Everywhere else too. Needless to say, I’ve already contacted my pharmacist!
Now have a look at this. What’s listed right at the very top of EPILEPSY TORONTO’s website! So, we have Local and Provincial Awareness, Support and Notification. Sniff, sniff. Anyone smell something funny?
National. Unless I’ve suddenly been struck blind, I see no mention of Drug Shortages or other problems anywhere on this site. What I do see is a lot written about raising money for support and the word “Research.” That’s rather interesting.
One needs to take Anticonvulsants (or rarely others) for epilepsy. If research is being done regarding medication, who manufactures medications?
There is also a nice little tidbit regarding concerns about Animal Testing (but nothing about epilepsy.) If you would like more information about what Epilepsy Canada is doing, or the guidelines for Animal Testing in general? Who do you contact?
Canadian Council on Animal Care
1510-130 Albert Street
Ottawa, ON, Canada K1P 5G4
That is a branch of the Federal Government of Canada.
I don’t think I need to sum (Big Pharma saving money as well as the Government) things up any further. You can all get the picture now I believe.