Friday, September 25, 2015

Drug Wars

I posted the above photo, innocuous enough, and told my Instagram followers that if such things turned them on, they should come over here and read this blog post or rant or whatever you might call the twenty-first year of wrangling with drug companies, pharmacies and insurance companies. I spent a bit of time today on the horse, trying to get Sophie's prescription of Vimpat refilled. I write a lot about the benzos -- Onfi, in particular -- but you might not realize that Sophie is also on Vimpat and has been since it was approved for use by the Almighty FDA in the fall of 2008. Yessiree Bob, as they say, and anywho. We slapped that drug on, along with the Onfi, numbers twenty one and twenty-two of drugs both approved and not-approved by The Almighty FDA and then spent the next eight years fighting for coverage by private insurance companies and Medi-Cal despite the grim fact that it doesn't really work. 

What does it mean when a drug given for seizure disorders doesn't really work?

It means the seizures don't stop.

Why, then, did you keep Sophie on that particular drug combination?

Because taking away drugs is a hideous process, and we had no other options. Oh, and because I used to listen to The Neurologist and do what he or she said with the exception of adding a third drug which I had earlier declared I would only do if Jesus Himself offered it to me. The Vimpat didn't appear to affect Sophie negatively, as far as we could tell (which isn't very far as she can't talk or express whether she's having any of the following:

Common side effects of Vimpat:

  • Blurred Vision
  • Dizzy
  • Double Vision
  • Feel Like Throwing Up
  • Head Pain
  • Throwing Up
  • Uncoordinated

Infrequent side effects of Vimpat:

  • Abnormal Manner of Walking
  • Diarrhea
  • Drowsiness
  • Feeling Weak
  • Involuntary Eye Movement
  • Involuntary Quivering
  • Itching
  • Loss of Memory
  • Low Energy
  • Sensation of Spinning or Whirling
  • Signs and Symptoms at Injection Site
  • Rare side effects of Vimpat:

    • Atrial Fibrillation
    • Atrial Flutter
    • Atrioventricular Heart Block
    • Decreased Neutrophils a Type of White Blood Cell
    • Deficiency of Granulocytes a Type of White Blood Cell
    • Feeling Faint
    • Giant Hives*
    • Having Thoughts of Suicide
    • Increased Eosinophils in the Blood
    • Inflammation of the Middle Tissue Heart Muscle
    • Kidney Inflammation
    • Liver Inflammation caused by Body's Own Immune Response
    • Mental Disorder with Loss of Normal Personality & Reality
    • Multiple Organ Failure
    • Slow Heartbeat
    • Stevens-Johnson Syndrome
    • Suicidal
    • Toxic Epidermal Necrolysis
    • Abnormal Liver Function Tests
    • Aggressive Behavior
    • Anemia
    • Chronic Trouble Sleeping
    • Confused
    • Depression
    • Difficulty Speaking
    • Disturbance of Attention
    • Dry Mouth
    • Easily Angered or Annoyed
    • Feeling Restless
    • Fever
    • Hallucination
    • Heart Throbbing or Pounding
    • Hives**
    • Incomplete or Infrequent Bowel Movements
    • Indigestion
    • Mood Changes
    • Muscle Spasm
    • Numbness
    • Numbness and Tingling
    • Prolonged P-R Interval observed on EKG
    • Rash
    • Ringing in the Ear
Sophie has two different Vimpat prescriptions because she gets a smaller amount in the morning, so we try to keep the number of pills she has to swallow to a minimum AND avoid cutting pills into quarters or halves or other infinitesimal amounts. Today, when I went to pick up the refills of BOTH prescriptions, I was told by The Earnest Pharmacist (sigh, they're always so earnest) that Vimpat is a controlled substance, and they couldn't release it to me until Monday. I told The Earnest Pharmacist (bless his corporate heart) that I knew that because my daughter had been taking the drug for seven years (even though it doesn't fucking work) and then The Earnest Pharmacist said he would check to see whether if he over-rode that stipulation the insurance company would cover it, and I, of the tiny, little mother mind™ suggested that he give me three pills to tide me over to Monday and The Earnest Pharmacist said, Oh, no, I can't possibly do that and right before I morphed into Terms of Endearment Epilepsy Drug-Style Shirley MacLaine and banged on the counter, The Other Earnest Pharmacist looked up from her computer or little desk where she was counting out some other poor soul's drug and said, Oh, I can take care of that! Then I forked over my $120 co-payment that Medi-Cal is supposed to pick up but has mysteriously neglected to do so without the six thousandth prior approval.

Then I grabbed a bottle of cheap vodka from the liquor aisle and a bag of Cheetos and ran from the store to add to my stash of Vimpat that I am hoarding for thrills at home in the brown basket right next to the bottles of Onfi and the Lone Ranger cookie jar.

* The reason for this post has just occurred to me. Sophie has been getting hives off and on for a number of weeks. I have no idea why and am now wondering if it's due to the Vimpat? I had thought a drug rash unlikely when I first saw them, because drug rashes usually show up right after you begin taking the drug, and it has been over seven years, but --- well --- sigh. 
** See above.


  1. I feel this entire everything. It makes me want to scream. Break out the vodka.

  2. a. fuck
    b. you crack me up.
    c. i've read, with other drugs, these rashes can show up anytime.
    d. fuck
    e. i love you so much
    f. keep up the irreverence

  3. Yes. Sensitivity can occur at any time.
    I almost laughed my ass off (I wish) the other day when I read that a couple had been arrested for growing marijuana in their basement. That wasn't very funny but the fact that the article referred to marijuana as a Schedule 1 drug was. Actually, no, it wasn't funny at all. But it's still true here in Florida. You need to teach Oliver to make martinis.

  4. I was picking up my anti-depressants one time and the pharmacist said they couldn't refill the prescription yet because I couldn't have used up all the drugs yet. But my bottle was empty. At which point I promptly burst into tears. The pharmacist then figured out that they hadn't given me enough pills last time, they had shorted me, and she filled my prescription. Apparently anti-depressants don't work so good either:)

    It's so frustrating when you've been doing this so long and other people "know better". You get that with young nurses too. They know better than the patients.

    Sending hugs and some OJ to go with the vodka:) Although I prefer cosmopolitans myself. Just saying.

  5. Hives, Stevens Johnson syndrome can happen any time with various AEDs, even after no symptoms of rash for many years, stevens johnson can suddenly flair up - as it did for my son on his birthday - with lamictal after having been on/off it for 11 years. now he is on vimpat, and while it is moderately successful at controlling t/c seizures, he is suffering other side effects, including 'incomplete infrequent bowel movements'. this alone can cause mood upset, headaches, discomfort, but i also see a dimming of his personality, so we have to address it stat. Sophie looked wonderful in the beach pic, her expression so free of the look of struggling that so often happen with epilepsy and the effects of many AEDs. her happy countenance gave me hope for of all our kids! best, jennifer d.

    1. Thank you for all this information and for sharing your child's experience, Jennifer D. I really appreciate the input!

  6. I thought of you today when I got this unsolicited employment opportunity in my inbox:
    "Health Care Investigator, $50,112 - $73,853 annually. A successful candidate must be able to make determinations that health care services, equipment, and pharmaceuticals are medically necessary and that they are being properly utilized from a medical standpoint in the context of the Minnesota Health Care Program (MHCP) and applicable federal and state regulations and requirements. A candidate must be able to deal effectively with difficult persons and hard to control situations. This position will require that the candidate be available for some over-night travel for purposes of attending appeal presentations."

    1. Ha ha Ha. "A candidate must be able to deal effectively with difficult persons and hard to control situations." I think they're referring to people like me, for sure.

  7. It stopped me in my tracks when I was reminded again that Sophie can't talk and tell you what side effects she is having. Sometimes it's the single symptoms of the disability that feel so devastating to my heat. Sorry, off subject. That's what hit me. I want vodka too.

  8. The vodka AND the Cheetos (puffs or crunchy?), a personal fave. Other than that, I just marvel at how devotedly you press on. Apropos of almost nothing, a friend of my son's predicted the NASA announcement will be that there is a city on the back side of Mars, the opposite of anything in our world, where everything works and, I assume, one never has to plead or argue for fairness and decency. We keep dreaming. xoxo

  9. So she was put on the vimpat, and there was no improvement on anything? But she is to stay on it infinitesimally? What would have happened, had you started to wean her off as soon as it was apparent it wasn't doing any good at all? Was she put on it as an aftermath to some major seizure event that may or may not be kept at bay by the drug ? That's how one family member is on so many of the drugs. Everyone is afraid to remove any of them as they are keeping up some house of cards, or maybe not. So right now the cannabis oil is the third med as you are weaning the Onfi?

    I say a quick pray, give a few minutes thought to Sophie, Calvin and others who are working at replacing these meds with the weed extracts, and hope that you get there soon so that it is the only thing these kids are taking.

    1. Cath Young, when we put Sophie on the Vimpat it was because her seizures were the usual out of control, and Vimpat was the newest drug at the time that we considered giving a try. As I remember it, we tried Banzel first, and there were so many horrible side effects, that we tried Vimpat in lieu of it. I imagine we didn't see any side effects with the Vimpat at first and continued on the drug in hopes that when we reached the maximum dose, it would help her. Time gets away from you, and yes, I grow afraid to remove the drugs -- not so much because I believe they're doing anything to help but more because weaning has been such a difficult process for Sophie. And yes, to the "house of cards" theory as well, although I long ago stopped adding drugs to what she'd already been on. She hasn't been on more than two drugs at a time in more than twelve or fifteen years -- I put a stop to that. Hope that answers your questions! The cannabis oil is a constant right now while I wean the Onfi. I guess you could consider it a "drug," but it works far differently than a pharmaceutical, so I don't consider it as being in the same class AND it hasn't had any negative side effects and only positive ones.

    2. I am so hopeful that the cannabis oil remains the constant and allows the removal of the Onfi, and then the Vimpat. It would be a wondrous step forward to many who are on these drugs that so diminish the quality of life. Our cousin who has uncontrolled seizures is a middle aged woman now, reminds me very much of Sophie. She lives in Switzerland, is not on prescription meds, though has been on the entire gambit, each med and combo removed as they failed to make any difference. They have kept on a homeopathic regiment which has not worked in eliminating the seizures, but none of the drugs have done any better, either alone or in combo. So back they go with that when the meds fail.

      It's generous of you to share your experience with drugs, cannabis and weaning.

    3. Cath Young -- So interesting to hear of your cousins in Switzerland and how they've gone back to homeopathic remedies when drugs failed. We used a homeopathic remedy for many years for Sophie -- probably the reason why we didn't go on many drugs or at least kept them stable. I've decided, though, to start weaning the Vimpat rather quickly to address the hives. I wrote about it tonight.

  10. As I slowly make my way through the Huffington Post story on Johnson & Johnson's manipulation of the market for their drugs, I am reminded how little physicians really know about the drugs they prescribe beyond what they are told by the marketing team. I remember weaning off of a very powerful antidepressant drug several years ago and how awful it was. It was only the stories of other people who had done it that sustained me because the doctor and the pharmacist both told me it wouldn't be too bad. As I decreased my dose and felt increasingly incapacitated by physical symptoms, I was plagued by the notion that I was crazy or hysterical or creating psychosomatic symptoms because "the experts" had told me it wouldn't be like this. But when I found the REAL experts - the people who had lived through what I was going through - I was both relieved and angry that my doctor had no fucking clue what it was like for people to stop taking this drug. I wondered how many patients he had prescribed it to who would eventually end up going through what I was going through.

  11. oh, rules ... and the blind people who follow them ...
    I don't approve of the vodka though. Next time, go to the Campari shelf - at least it's a pretty, happy cherry red :)



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