Saturday, March 31, 2007

Day Three on Provigil, Honeymoon update

Day Three on the New Dose of Provigil

I feel nervous and a little agitated.  I was nervous and agitated all night.  My insomnia was much worse.  I didn't go to bed until after 11:00 and was up at 5:25 and awake before that.  That wouldn't have been so bad, I suppose, if I had actually slept between those times, but I didn't.  I was awake off and on multiple times looking at the clock.  I had a very restless night.  It was worse than the two previous nights.  I had hot flashes or night sweats, was restless, tossed and turned and thrashed.  I had back pain while lying down and IBS when I got up.  BUT I don't know if it was the Provigil causing all this or whether it was something I ate. Dr. Beeai says I may have a form of Hypoglycemia, she gave it a name but I didn't write it down and now forgot.

So now I want to look up more about that form of hypoglycemia (whatever it was) and also research the adrenals since Blue Rose suggested that might be a problem. 

I worry that my body will get used to Provigil and if I stop it I will be a little blob of useless protoplasm.

I also feel uncomfortably thirsty.  Excessive thirst can be caused by diabetes, but also as a side affect of some of my meds.  But it comes and goes.  I have a theory (right or wrong) that I get very thirsty when I eat a food I'm allergic to so that the body can flush the toxins out.  Or, what it perceives as toxins.  I have lots of theories about my health issues, but so far, few have ended up being useful.  No wait, that's totally not true.  I am feeling much better than I was, just not well.

One reason I think food might be a factor is the extreme variability of symptoms and nothing else in my life varies that much.

Honeymoon update

On an altogether different note, I am trying to make arrangements for our honeymoon, which will be over a year late.  It turns out to be significantly more difficult and time consuming than one might assume.  I've been trying for several weeks to make reservations at the Hotel Park in Ljubljana and still haven't succeeded.  This morning, in frustration, I picked up the phone and called them.  First I had to learn how to make an international phone call, which I don't think I have ever done before.  You put in a code for your country that alerts the system that it's an international call (for US it's 011, if you're in Europe, I think it is 00, but I am not sure).  Then you put in the country code and then the phone number.  Slovenia's country code is 386.  SO after all this (and spending a lot of time on line before that trying to get a reservation, I call, and the guy I need to talk to, Joze (pronounced Yo-zhe) is not there.  The guy who answers doesn't know what to do and no one is there to help him.  Aieee.  I try again to email Joze and the email comes back refused.  So I have wasted all this time and so far gotten nowhere.   At least we did finally get our airline tickets and they are in our possession.  And rental car reservation.

Thursday, March 29, 2007

Day 1 of the new med-dosage

I haven't been blogging much; I'm just too busy!  AK!

Also, the new meds don't help.  I was started a few weeks ago on Provigil, which makes me nervous and agitated—it stresses me out because I feel even more overwhelmed by everything than usual.  To make things worse, it seems to aggravate my ADHD so I run around in circles doing a billion things and accomplishing nothing.

Today they upped my dose.  Hello?  I was having a hard time with it, so why not make it worse?  I'm crazier even that usual with sixteen projects all going on at once and dashing back and forth between them like a ninny.

Provigil is an upper.  I am very sensitive to stimulants.  I tell my doctor that and he says this works by a different mechanism.  Maybe, but I feel as if I had twelve cups of coffee and the crash is like coming down from 12 cups of coffee.  I read that coffee any time, even early in the AM disturbs a sleep cycle.  That's all I need.  Oh well, we'll see!

A Serving Size

I gave up desserts for Lent (even though I'm not religious) and also I am trying to limit myself to one serving of whatever I am eating.  Not 3 or 2 or even 1 and a half, one.  I haven't lost any weight at all; I've prolly gained weight.

A serving size isn't very big.  We are nearly out of food because we were supposed to shop Monday night, but couldn't.  So there was no food for lunch, no normal food and none for dinner either.  The boys will have pizza, but what will I have?  I'm allergic to pizza?

For lunch, I counted out 9 corn chips and ate them slowly.  Nine chips is a serving.  Didn't seem like much food.  I know it's not the greatest, but like I said, we're out of food.  (Real food, that is).

Sunday, March 18, 2007

My New Shop

I created a new shop called The Pine Warbler to sell T-shirts, tote bags, ornaments and so on at Cafe Press. This is a ceramic ornament with my warbler painting on it. Posted by Picasa

Saturday, March 17, 2007

Provigil, CBT, and Continuing Insomnia, 070317

Near the Western Edge of the time Zone at the beginning of the new, earlier Daylight savings time, it is completely dark at 7 AM. There’s fresh snow outside. It was completely dark at 6 AM and at 4:30 AM. I had insomnia again. Not the worst insomnia, but insomnia never the less. It’s a boring topic because it happens so often, but it’s still a problem. This version of insomnia came with restlessness and itchy skin verging on being crawly. I don’t like it, to say the least.

Since I didn’t get to sleep until after 1 AM and was awake before 4:30, I got less than 3 and a half hours of sleep. And that was restless and disturbed. My concern is that besides being tired and unable to concentrate, I may get cranky and I hate it when I get cranky! I'm afraid my sweetie will get angry and stop loving me; that he'll confuse my condition with me.

I’d like to know what causes this to happen, why I sleep better sometimes and worse others. I took the exact same meds. I ate similar foods to other days when I felt fine. I did have a late-night snack because it was recommended for insomniacs to have a small late-night snack of turkey, potato. I had a few corn chips and potato chips, two slices of turkey sandwich meat and a few raisins—it was supposed to help me sleep. No such luck.

I am on Rozerem and Provigil now, a trial. I think generally I am sleeping a little wee bit better but not last night. I am unhappy about being on meds when we don’t know what the long-term effects will be. The Provigil made me wildly nervous and agitated at first and my insomnia was worse. But now it doesn’t seem to do that much. The combination of the two certainly does not STOP insomnia!

I’ve been reading about Cognitive behavioral therapy, or CBT1 for Insomnia. It’s supposed to work better than sleeping pills. I’ve been trying some of the techniques and they seem to help somewhat. (I still think I have a physiological problem caused by food sensitivities or something.) Some of these are a bit counter intuitive: Sleep restriction (for example), getting up after 20 minutes of not sleeping and reading for 20 minutes, and cognitive restructuring.

Here are some questions to ask for cognitive restructuring:

1. Is this thought really true?
2. Am I overemphasizing a negative aspect of this situation?
3. What is the worst thing that could happen?
4. Is there anything that might be positive about this situation?
5. Am I catastrophizing, "awfulizing", jumping to conclusions, and assuming a negative outcome?
6. How do I know this situation will turn out this way?
7. Is there another way to look at this situation?
8. What difference will this make next week, month, or year?
9. If I had one month to live, how important would this be?
10. Am I using words like "never", "always", "worst", "terrible", or "horrible" to describe the situation?

When I am laying awake worrying about things, I am supposed to ask these questions. I am supposed to challenge my negative automatic thoughts (NATs). But that isn’t so much what I do when I can’t sleep—what I do is try to solve problems. I try to work out solutions to things that are bugging me, rather than just “awfulizing” things. And then I try to tell myself, I don’t need to solve this now, I can solve it tomorrow. But I know how that works, LOL! I rarely do solve things because there is too much to be done.

I am supposed to use the "double standard" technique developed by Dr. David Burns. This technique is based on the idea that, when it comes to explaining adverse events, we are often much harder on ourselves than we are on our friends. We operate on a double standard: we have realistic and fair standards that we apply to others whom we care about and we encourage them to reframe their reactions to negative events. In contrast, we set unrealistic standards for ourselves when we explain stressful events to ourselves.

To use the double standard techniques, I need to examine my NATs and then ask myself: "Would I say this to a close friend with a similar problem? If not, what would I say to him or her?". The idea is to reframe NATs by giving myself the same encouraging, empathic messages I would give a friend. It certainly is true that I am harder on myself than I am on others in some respects. (In other respects, I am harder on others, LOL!)

It doesn’t seem, however, that this aspect of the technique applies that well to me. I’d like to short circuit the worrying altogether, at night, anyway. It seems that if I were sleeping to begin with, I wouldn’t be worrying!

Sometimes, when I am lying there wide awake, I plan a poem, a story or an art piece. Then later, I actually do it. But I only do that because I am awake and bored. Of course, once I get started thinking about it, I’m engaged and less likely to sleep.

So who wants to waste time worrying about worrying? Not me. And if worrying makes the insomnia worse, I probably shouldn’t worry about the insomnia, either. So there. (Hard to not when you're laying there awake hour after hour, though!)

(PhotoArt piece: Measuring the night. By me. Brand new. The orginal photo was from a gravestone--measuring a person's life, I guess.) Posted by Picasa

Friday, March 09, 2007


(image from Belle Isle conservatory by me)*

This is day four. I think. I'm so tired I can't think right. Dr. Guyer started me on Provigil. It took a long time—about three weeks, from the time he prescribed it until I actually began taking it, because it is a controlled substance. I had to get prior authorization, which took a while, and give out my precious social security card to the state and so on. What a pain.

I asked why it was a controlled substance and was told at the Pharmacy that it was "a super speed." This annoyed me—why would someone give a super speed to an insomniac? I can't drink coffee or tea or eat chocolate or even ginger or mint tea, all of which are stimulants, so why would Provigil, which is a super stimulant, be a good choice for me? I was not at all eager to take it. Dr. Guyer had repeatedly suggested it and I had repeatedly refused it and finally he told me to try it. So I am.

The first day I started it, I re-researched it, after having done so before, when he'd first suggested it. What is PROVIGIL, and what does it do? PROVIGIL is a medication to treat excessive sleepiness caused by certain sleep disorders. These sleep disorders are narcolepsy, obstructive sleep apnea/hypopnea syndrome (OSAHS), and shift work sleep disorder (SWSD). I have obstructive sleep apnea. I used to think I had narcolepsy, because I fell asleep at the drop of a hat. That was before I got the CPAP.

When I read the THE GOOD DRUG GUIDE (a good place if you want positive information about drugs), I had some ideas why my doctor prescribed it.

  1. " ...modafinil ('Provigil', 'Alertec', 'Vigicer', 'Modalert', etc) is a memory-improving and mood-brightening psychostimulant. It enhances wakefulness and vigilance, but its pharmacological profile is notably different from the amphetamines, methylphenidate ( Ritalin) or cocaine. Modafinil is less likely to cause jitteriness, anxiety.
  2. Current research suggests modafinil, like its older and better-tested analogue adrafinil, is a safe, effective and well-tolerated agent.
  3. Modafinil is used experimentally in the treatment of "atypical" depression. Atypical depression is marked by hypersomnia, hyperphagia [over-eating], low energy, and rejection-sensitivity. The syndrome is actually quite common. The results of preliminary studies have been encouraging, but large-scale trials are needed.
  4. It is used "off-label" to treat fatigue, depression, attention deficit hyperactivity disorder, and sleepiness caused by other prescription medications

Notes on the notes:

  1. I could use some memory enhancement and mood-brightening (who couldn't?), but I think my memory failures and mood depression is due primarily to LACK OF SLEEP! And I am experiencing jitteriness, nervousness.
  2. If it's so safe, why is it a controlled substance?
  3. I may have hyperphagia (overeating), but I do not have hypersomnia: Hypersomnia is characterized by recurrent episodes of excessive daytime sleepiness or prolonged nighttime sleep. Different from feeling tired due to lack of or interrupted sleep at night, persons with hypersomnia are compelled to nap repeatedly during the day, often at inappropriate times such as at work, during a meal, or in conversation. I was tired during the day but not sleepy. I was never sleepy, day or night. (Before Provigil.) I almost never nap, because I never feel sleepy.
  4. I do have ADHD!! But this drug so far seems to make it worse, not better. Maybe because I am sleeping so poorly.

I also have insomnia and am very sensitive to stimulants. Dr. Guyer told me that Provigil works by releasing histamine in the brain. Histamine wakes you up. Antihistamines make you sleepy. He said it was fast-acting. The literature says it normally takes 12-15 hours to clear the system. If I take it at 8, I should be able to sleep at 11. But I may be overly sensitive.

I also worried the histamine would make my allergies worse, and maybe my fibromyalgia, too, because there is a histamine link with fibromyalgia.

The first day I took it, I basically didn't sleep all night. I slept a little better the second night, but not well, and a little better last night, but still not well. Overall, though, it's been a long time since I've had a good night's sleep and I'm starting to get stupid with it.

My fibromyalgia, which Dr. Guyer repeatedly insists, like my other doctors, is linked to sleep (yes, we do know that, theoretically), but my fibromyalgia, in spite of very bad sleep, has been generally improved. Not good, but better.

The most common side-effects observed with modafinil, as compared to placebo, when prescribed in the recommended doses for the approved indications, are as follows:

Additionally, gastrointestinal distress, which may be alleviated by taking the drug after a meal, aggressiveness and skin irritation have been reported, but are rare.

Most side-effects subside after a few weeks without reducing the dose. Only headaches and anxiety have been shown to be proportional to dose, and these may benefit from a temporary reduction.

I have definitely been experiencing nervousness, anxiety and fairly severe insomnia. And some dry mouth. I was a little worried about the tachycardia because I've had some scary incidents of that. But so far none with the Provigil, but a little flutteriness. The first day was the worse with also a tight chest and the worst nervousness. That part seems to be settling down a little. My allergies do seem to be remotely worse, but insufficiently worse to be a real problem.

The drug seems to wake me up as it takes effect in the morning, but I am still tired from lack of sleep and I feel and behave differently than I would if I just had a good night's sleep. I'm grumpier and can't think as clearly. It wakes me up in the sense of making me a little more alert, but being awake was NOT the problem I had in the first place. I wasn't sleepy during the day. I was tired. Once the drug takes affect, I do feel somewhat less tired. But I'm not sure that the benefit is worth filling myself with controlled substances.

When I started this piece, the drug hadn't taken effect. I said, I'm so tired I can't think right. I do feel better now. However, in the past few days, my thinking has been impaired by tiredness (unless it was impaired by the drug itself.)

If Rozerem, which I am still on, is a downer of sorts and Provigil and upper, than I am on uppers and downers and that doesn't seem so cool.

*(image to represent the strangeness of artificial uppers and downers compared to the real thing of normal healthy sleep and waking.)(an example of how my brain is failing to function properly is that I cannot think of the name of this flower right now, even though I know it perfectly well. tiredness or early alzheimers?)


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