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But I'M NOT BITTER...
The Goddess of battle, strife, and destruction explains it all for you

SeizurePalooza

by

March 28, 2010

Getting all that topamax out of my system is gruesome, but it has to be done.I feel much better for it as far as my frame of mind is concerned, but even at the best of times, dilantinís not a reliable drug for me and Iíve had four seizures already.

Iíve resolved only to be on it until I get all the topamax out of my system:a drug switchover time is a dangerous one Ė you nearly always seize. Iím treading carefully on the dilantin.If memory serves, it deadened me completely.It made me feel like the whole world was very, very far removed and had nothing to do with me anyway. I could barely think.It seems I can take a certain drug for maybe a year before I throw in the towel due to the side effects.

So Iíve had enough and Iíve resolved to simply go drug free and take my chances.

Iíve spent almost two decades on anti-seizure medication Ė and Iíve been on them all Ė and I can say without hesitation, the drugs have been a far worse blight on my life than the illness could ever be.And epilepsy is pretty frigging scary.

All these manufacturers claim great things with their product.Not one of them has panned out Ė unless youíre looking in the side effects column.The new neurologist Iím seeing said that in his practice, heís seen a substantial percentage of people on topamax have psychotic breaks and I donít find that at all farfetched.I was about a day or two away from one myself.

For example, have a look at what the CBC just reported.I was on this drug for well over a year, had the most horrifying side effects, next to no seizure control but was urged to stay on it by neurologists.(I eventually threw in the towel, as I do with all seizure meds, in this case because I kept fainting and couldnít keep my balance reliably):

Pfizer to pay $142M for drug fraud

Sales of drug total $300M annually in Canada

Last Updated: Friday, March 26, 2010 | 3:28 PM ET Comments85Recommend77

CBC News

Pharmaceutical giant Pfizer has been ordered to pay $142 million US in damages for fraudulently marketing gabapentin, an anti-seizure drug marketed under the name Neurontin.

A federal jury in Boston ruled Thursday that Pfizer fraudulently marketed the drug and promoted it for unapproved uses. The jury sided with California-based Kaiser Foundation Health Plan Inc. and Kaiser Foundation Hospitals, the first to try a gabapentin case against Pfizer.

Data revealed in a string of U.S. lawsuits indicates the drug was promoted by the drug company as a treatment for pain, migraines and bipolar disorder ó even though it wasn't effective in treating these conditions and was actually toxic in certain cases, according to the Therapeutics Initiative, an independent drug research group at the University of British Columbia.

The trials forced the company to release all of its studies on the drug, including the ones it kept hidden.

A new analysis of those unpublished trials by the Therapeutics Initiative suggests that gabapentin works for one out of every six or eight people who use it, at best. The review also concluded that one in eight people had an adverse reaction to the drug.

"The much larger majority of people will not get any benefit and many of them will have chronic neurotoxicity or poisoning of the brain," said Dr. Tom Perry of the Therapeutics Initiative.

The drugs represent a waste of money for Canada's health-care system, said Perry, who questioned why some doctors continue to encourage people to take the drug even though the patients are not benefiting.

"We have been using probably somewhere in the order of around $300 million a year in Canada recently and this drug has been overused since the late 1990s," Perry said. "So, do the math. It's probably well in excess of a billion dollars."

Pfizer defends its actions and its drug. The company has already been hit with $430 million in penalties and fines for fraudulently promoting gabapentin in the U.S.

With files from the Associated Press


Read more: http://www.cbc.ca/health/story/2010/03/25/gabapentin-ubc.html#ixzz0jThlMcQI

 

None of the others are any better, and some are considerably worse.Keppra turns me into Jack the Ripper, Topamax turns me into Sylvia Plath, Valproic acid will make me swing between homicidal and suicidal and I hallucinate on it Ė the list goes on.Just as an aside, Valproic acid (marketed as Depakote in Canada) was raised as a possibility, but Iíve been there before and it is contraindicated for me (Iím on blood thinner, which it interferes with and itís hideously liver toxic). This drug blew my liver out in under a month. ††Have a look at the side effects in the monograph, especially the psychiatric side effects.These are COMMON all across the board for every anticonvulsant out there and have a hell of a lot to do with why epilepsy patients can seem extremely strange:

Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); abnormal thinking; change in menstrual period; changes in behaviour; chest pain; confusion; dark, tarry, or bloody stools; dark urine; difficulty speaking; difficulty urinating or other urination problems; extreme tiredness; fast or irregular heartbeat; hallucinations; hearing loss; involuntary movements of the arms and legs; involuntary movements or chewing movements of the face, jaw, mouth, or tongue; joint pain; lack of energy; loss of appetite; loss of coordination; loss of seizure control; memory loss; new or worsening mental or mood changes (eg, aggressiveness, agitation, anxiety, depression, exaggerated feeling of well-being, hostility, impulsiveness, inability to sit still, irritability, panic attacks, restlessness); nosebleed; pounding in the chest; red, swollen, blistered, or peeling skin; severe or persistent nausea, vomiting, or stomach pain; shortness of breath; suicidal thoughts or actions; swelling of the arms or legs; symptoms of infection (eg, fever, chills, sore throat); tremor; unusual bleeding or bruising; unusual weakness; vision changes or blurred vision; yellowing of the skin or eyes

THIS was considered the lesser evil Ė and topamax is far, far worse for the side effects.

What itís all boiling down to is quality of life.While Iím on these meds, I have very little of that.They affect me physically and they affect my state of mind Ė which in turn affects every other aspect of my life.

My seizures scare the hell out of me.Theyíre usually huge tonic-clonic events and Iíve been badly and repeatedly injured over the years.Iíve set myself on fire (after seizing into a lit gas stove), seized on a subway platform, nearly drowned after seizing while swimming and Iíve seized while jay walking across Yonge Street in Toronto.Mine are extreme, not only because of epilepsy but also because liver failure can cause me to seize. ††Because Iím on blood thinners, if I seize and start to bleed, I could bleed out.And half the time thereís no visible blood because the injuries are internal.

Because my seizures are so frightening, Iíve taken the drugs in the past.Now Iím thinking itís really not worth it.I think Iíd rather seize and have done with it.Many of these drugs will not block my seizure aura Ė a feeling of dread and a sense that a huge seizure is imminent Ė and thatís even scarier than the seizures.

This is an isolating illness and one thatís extremely difficult to live with.If youíre seizing, youíre AFRAID to go out.If youíre not, youíre either afraid youíre going to or the drugs make you so odd and paranoid, you shy away from people.The worst thing is that you know it and have no idea how to mitigate or alleviate it.

Iím only throwing in the towel on all the meds because they seem to cause me more harm than good.I am *NOT* advocating that anyone else out there follow my example.My new neurologist and I have gone over the risks Ė and he made sure I was fully aware that by going off my meds, Iím playing Russian roulette.I know this.Iím being monitored. If I seize and hit my head, chances are better than even that Iíll bleed out.

Given the constellation of side effects, itís a risk Iím willing to take.Most everyone else out there may not have side effects to the same degree I have, so pay attention to the advice your doctors give you.Iím on loads of other meds for other conditions and that fact is likely contributing to the hard time Iíve had on these drugs.If all youíre taking is an anticonvulsant, itíll probably work just fine for you.With drug interactions, my situation is far different from yours.

So unless your neurologist tells you otherwise, take your meds.I know what I am doing and Iím well aware that Iím running a real and potentially fatal risk.Iíve accepted that risk.The choice, as far as I can tell, is to be mostly seizure free and crazy as all hell or be sane and run the risk of seizing and dying at any moment.

I choose sanity.

Till next time,

 

M

 



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