The Stims, and How (Not) to Get Them

meowser-48.jpg posted by meowser

Contrary to what one might assume from looking at me, the heaviest part of my body is not my boobs, my fat ass, or my thighs. (Kinda reminds me of that old Frank Zappa number, “What’s the Ugliest Part of Your Body?” — “some say your nose/some say your toes/but I think it’s your miiiiiiind!”) No, if I had to choose one part of my anatomy with the greatest (relative) heft, it would have to be…my eyelids.

Seriously. I’ve been a snoozebucket as long as I can remember. Even as a teenager, for whom in America it’s practically your civic duty to be whooping it up as often as possible, I looked forward to sleep like most kids looked forward to parties. Did I have it checked out? Oh, did I ever. Thyroid tests. Sleep studies. Blood counts of every description. Brain scans. Normal, normal, normal, normal. So they said.

I felt this way long before I was ever Officially Fat. I felt this way if I lost weight, if I gained weight, if I stayed the same. I snore when I lie on my back so I try not to sleep in this position, but the sleep study that was done on me as an Officially Fat person was negative for apnea or hypopnea. Everyone kept telling me, “Exercise, exercise, you’ll have sooooo much more energy.” No, see, here’s how it is. I can sleep for seven hours, have a nice big mug of coffee or chai, go for a nice long power walk…and 30 minutes later, will be fighting the urge to faceplant on my keyboard like I’ve been up for three days straight. Yes, even after years of regular exercise. And when I’m on antidepressants, make that nine hours. I’m not kidding.

On any antidepressant that works sufficiently on my serotonin to make it worth taking, I can sleep and sleep and sleep, and wake up feeling like I’m coming out of general anesthesia. And consuming enough coffee or tea to counteract that effect would basically mean having little caffeine bugs eating a hole in my stomach you could drive a Tonka dumptruck through. Even that much coffee might not do it. Yeah, it’s bad. And when I say I’ve tried everything for this, I mean anything you could possibly think of, and a few things you couldn’t. About the only things I haven’t tried are acupuncture, because I’m not convinced it would change my brain chemistry enough to justify the expense, and cocaine or meth, because…I just won’t. (If I actually turned out to like one of those drugs, and there’s a very good chance I might, then I’d really be hosed.) And needless to say, when you sleep like a hibernating bear, it’s very difficult to have a life. Or, for that matter, a blog.

Oh, and did I mention that as of the first of the year, I’m required to work 40 hours a week to keep my insurance instead of 35? Until they pulled that little stunt, I could get by with small amounts of psychiatrist-approved Red Bull to clear the poop out of my noggin long enough to get through the workweek (and not touch the ass-tasting stuff on my days off). Red Bull is the ONLY energy drink that has that effect on me, and I’ve tried them ALL (other than Rockstar, because of who owns it). But an extra five hours a week was going to mean either more Red Bull, or even less of a life. I wasn’t sure which one would suck worse.

So when my psychiatrist, having heard my latest tale of zzzzzzz, said he’d give me some samples of Provigil, I was ecstatic. Provigil (modafinil) is a stimulant that, for many, provides all the advantages of amphetamine-derivative stimulant drugs, without any of the annoying side effects — no jitteriness, no lip-gnawing tenseness, no sleep disturbance. But don’t bother asking your doctor if Provigil is right for you; unless you’re Barry Bonds or someone of similar caste, you can’t get it. That is, it’s perfectly legal to purchase and possess, but your insurance company won’t approve it. Even if you beg. Maybe especially if you beg.

I’d tried it years ago and loved it. It kept me awake as well as methylphenidate (generic Ritalin), but without the rebound effect when it wore off that would make me feel tired physically but unable to get my brain switched off for sleep. Alas, when my insurance company got the sleep study results back and there was no diagnosis of narcolepsy — only “idiopathic hypersomnia” — they stopped approving it for me, and it was back to snoozeville. When I asked other doctors about it later on, they told me what a nightmare it was to try to get it okayed. But now, my psychiatrist seemed to think that since I was working nights, and one of the on-label uses for it was for “shift work sleep disorder” (yes, that’s an actual DSM-IV diagnosis, go fig), we could get them to say yes.

Meanwhile, I brought my samples home and took it the next day. It was as wonderful as I’d remembered. There was the little catch that I had to actually get out of bed before I felt like it, otherwise I’d just keep sleeping and sleeping. But once I did, I could almost have cried for the life I could have had all my life, if I could only have had this drug. Oh, Provigil, I love you. I love you. And I know you love me, too. I can tell by the way you massage my neurotransmitters, and exactly the right ones, like nobody else ever could, like I was whispering instructions into your chalky ear. We belong together, you and I. Why must fate conspire to keep us apart?

Predictably, the soggy noodles at my insurance company said no when I tried to fill the scrip. (I won’t name the insurance company for privacy reasons, but it really doesn’t matter which one — I’ve been with half a dozen of them and they’re all like that.) And buying the stuff outright was out of the question. The current wholesale price of Provigil now stands at an average of $8.71 per pill. That means that at retail, you could easily pay $11 or $12 for ONE pill. Even taking into account the once-a-week drug holiday I employ with stimulants so as not to build up a tolerance, we’re looking at well over $300 a month for just that one scrip, at least. Not only that, but Cephalon, the company that makes Provigil, has been suing generics manufacturers to prevent them from making generic modafinil available (the patent expires in 2012), and says it intends to keep jacking up the price. They have a great product, they know it, and they’re going to milk it for every cent they can get. So really, I’m at least as pissed at them (and at for-profit health care in general) as I am at the insurance company.

And add to that the fact that a lot of people with nothing especially wrong with their brain chemistry are “borrowing” it to work long hours or party all night, and you can see why insurance companies are so stingy about giving their approvals. I wish the brownnosing workaholics and party animals would knock it off and stick to Red Bull; they’re making it very difficult for people like me who have a medical reason to take it and haven’t found a lot of success with anything else. I’ve looked at various message boards and I keep seeing it over and over again: “I can have a LIFE with this drug, for the first time ever.” Anyone who’s so sure that a fatty fatass who’s not burning it for two hours at the gym every night is just being lazy needs to borrow my brain for a month, graft it on to their perfectly toned body, not take any pharmacological stims, and see how long they keep their job, let alone do all their ab crunches.

And I don’t even want to THINK about all the human potential we could be losing in this country just because people can’t stay awake, even when they’ve slept plenty.

My doctor was so impressed with the difference with me on Provigil that he appealed to the insurance company himself. Filled out their damn form and everything. They still wouldn’t go for it. They’ll only approve it for narcolepsy. Shit, shit, and shitshit. Not that I was surprised.

So he asked me if I wanted methylphenidate again, and this time try maybe 2.5 mg at a time instead of 10, and I said I’d rather try something else. I mentioned that my stepfather had a similar issue and had had good results with micro-doses of dextroamphetamine, and he said he’d let me try it out, since he already knew I was “taking medications appropriately” and thus was unlikely to abuse it. Also, the insurance companies have no problem approving it. Yeah, they’re way more likely to approve an amphetamine than something like Provigil. Why? Because it’s cheap, that’s why. Need you ask?

Meanwhile, I still have some samples left of Provigil, about a month’s worth. A month of my eyes staying open like I need them to. Bliss.

If the dex doesn’t work out, it’s back to Red Bull, I guess. And Red Bull is nasty. If I’m going to taste ass, I would like to hear squeals of ecstasy in return.

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16 Responses to “The Stims, and How (Not) to Get Them”

  1. mustelid Says:

    If I’m going to taste ass, I would like to hear squeals of ecstasy in return.

    LOL! And damn, that sucks. I’m a happy (ab)user of Red Bull myself. The sugar-free variety keeps me going nicely for my insanely early job. Sure, it’s nice having most of the afternoon off, but I am emphatically NOT a morning person, even after a decade + and counting.

    And that totally sucks on the pill front. Despite my massive suspicion and distrust of Big Pharma, I’m holding out hope that there’ll be a nifty little pill for borderline low thyroid levels that’ll kick up some ambition in me. Though being able to sleep through the night would probably be helpful there…

  2. April D Says:

    “If I’m going to taste ass, I would like to hear squeals of ecstasy in return.”

    Heehee. Totally! Anyways here’s hoping that any sort of changes in medicine we see lead towards a non-for-profit health-care system. Oh wait, am I still asleep and dreaming? Probably. I want a pony while I’m at it….

  3. angrygrayrainbows Says:

    Oh man… I’m so sorry Meowser. I can really relate… especially to the part of looking forward to sleep the way other people look forward to parties. I’ve been this way most of my life and I also had lots of things tested and everything was “normal”.
    The big diff for me is that I actually am very ADD’d and psychiatric Red Bull (generic ritalin) works wonders for me. If it messes with my sleep too much (or I start missing sleep), I just skip some pills (as my pdoc guided me to) and sleep like a baby.
    Your insurance company is heartless. I feel a big urge to smack them upside the head over and over and over…
    I hope you get some relief soon.

  4. Rachel Says:

    My husband sleeps a lot and he can sleep on whim, too. It frustrates the hell out of me, especially when I’m lying in bed unable to go to sleep because I took my Adderall too late in the day and I know that regardless of when I go to sleep, I will wake up at the same time each morning without fail. He can even zone out at work with his eyes open. He says he’s a sleep debtor — same as his mom — in that he catches up for sleep lost through the week on the weekends.

    You say you tried Ritalin… have you ever tried Adderall? I don’t get any of the rebound effects — I do know when it’s wearing off because my concentration wanes.

  5. DRST Says:

    Yeah, they’re way more likely to approve an amphetamine than something like Provigil. Why? Because it’s cheap, that’s why.

    I hate our health care system. I really, really do.

    *hugs*

    DRST

  6. Stephanie Says:

    Michael Savage’s kid? Really?!? I’m going to tell my brother to lay off the stuff.

    Oh, and holy crap insurance companies are stupid.

  7. Maritzia Says:

    I know how you feel about the drug fights. When prilosec first came out, I could not get the insurance company to pay for it, even though I had used every medication out there with no effect. I had a constant ulcer going and I took so much Tums that I had muscle cramps and chest pain.

    I fear milnacipran, for my fibromyalgia, will be the same. It was just approved by the FDA. I only have about 10 months left on my clinical trial and then I’ll have to pay for the drug, and I’m not going off of it if I have to prostitute myself to pay for it. Hey, anyone know someone willing to pay for sex with a middle-aged, fat lady without much energy *laughs*.

    @mustelid – there is a pill for folks with borderline low thyroid. It’s called thyroid! If your doctor isn’t willing to put you on a trial to see if it helps your symptoms without making you hyper, then see another doctor. You may have to search for one. I sent letters to 52 doctors about the issue and only got 1 positive response, but 1 was all I needed. I have to have a dose of thyroid that almost completely suppresses my TSH in order to function, and I have no symptoms at all of hyperthyroidism with it. Look at the Fibromyalgia page on my blog. I talk about it there.

  8. Ducky Says:

    Wow. It’s so interesting that you would post an ode to Provigil this week, seeing as my boyfriend was just diagnosed with narcolepsy a couple days ago. We’re waiting while his doctor and his insurance fight over the Provigil prescription but I doubt they’ll deny it because he also has epilepsy and can’t do the cheaper stimulants.

    It does give me hope, though, since you’ve had such a good experience with it. I just wish it wasn’t such a pain in the ass to get.

    On a side note, we found out that one of the last resort drugs they use for narcolepsy is GHB (the date rape drug). You can imagine the kind of nightmare it would be to get that prescription.

  9. JeanC Says:

    Health insurance companies suck big time. They make you think they are there for you, but they are only there to take your money and try and avoid actually paying out for the medical stuff you need. Actually, that is the goal of pretty much all insurance companies 😛

    Hopefully you can come up with a solution soon.

  10. living400lbs Says:

    Does Cephalon have a reduced-price-if-you-prove-hardship option? Yeah, I know it would suck to ask them, but some manufacturers do so they can claim they make it available to those who need it.

  11. Meowser Says:

    Thanks for your support, everyone!

    Living400lbs: They used to have a used to have a patient assistance program for supplying this drug, but no longer do. Believe me, I wouldn’t hesitate to ask!

    Rachel: No, I haven’t tried Adderall yet. I think my doctor was reluctant to go with an amphetamine derivative at first because he thought it would increase anxiety. He’s allowing me to try it now at a very small dose. I don’t have an official diagnosis of ADD, and so he thought it would be easier to get insurance company approval for dexedrine because it’s a generic and hence cheap, and if I did have to buy it myself it would be relatively inexpensive. So, we’ll see.

  12. welshwmn3 Says:

    Most people think insurance companies are in business because they care for people. Unfortunately, that’s not true.

    Insurance companies are in it for the money only. They are playing the odds (out of millions of insured, yes, there are going to be the ones that need a ton of coverage, but there are also going to be those that don’t need or use any, and the odds are that the ones who don’t/won’t will be more than enough to offset the few who do). It really, really sucks.

    And this comes from a woman who used to work for one of the big insurance companies, AND who has that same big insurance company as her group carrier now. And who’s ticked off that her husband’s allergy med (the only one that he’s found that WORKS) — the generic of allegra — is a teir III drug on this policy. Grrrrrrrrrr.

  13. Keep Your Cameras Out Of My Cleavage « fat fu Says:

    […] The Stims, and How (Not) to Get Them […]

  14. maatnofret Says:

    Boy, this pisses me off. I’m angry that the greed of others prevents you from getting what you need.

    When I didn’t have insurance, I could only afford one of my prescriptions. I simply did without the other one, and it had a pretty bad effect on my ability to function. I self medicated as best I could, but it wasn’t the same at all. I was not as impaired as you are, but that’s just dumb luck on my part.

    I don’t know if you are interested in doing this, but there are still UHC proponents that are collecting stories. Yours would be a good one to tell.

    For what it’s worth, I’m here via Shakesville. You are an excellent writer, so I’ll have to come back.

  15. boo Says:

    hey. i don’t take nearly as much modafanil as i’m prescribed. different brand, different country, lower prices, and my insurance *does* cover it. i could try to mail you some? see if it gets through? you might get a couple of extra weeks of wakefulness for free. it will probably expire unused, otherwise.

  16. meowser Says:

    Thanks for the offer, boo, but I’ve actually switched over to the dextroamphetamine and it’s working fine (and, no problems from the insurance company).


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