the_rck | (no subject)

I'm cutting this because, while it's important documentation for me on the Provigil, it's also me whining and complaining and being hugely and unreasonably cranky. Please don't read it if you're going to judge me on it or urge me to pull myself together and do the things I need to do. You'll just make me crankier, and that's bad for my headache.

As to the Provigil, I've realized that it's not that it doesn't give me more physical spoons. It's that the side effects take away at least as many as the medication gives. It would appear that the medication is messing with my blood pressure. I'm usually at the low end of normal.

I didn't take any Provigil at all on Tuesday, after deciding on Monday that 100 mg was too much. Yesterday, I tried 75 mg since the side effects weren't bad at that level. Early in the day, I figured out that bending over was a problem and realized that the biggest thing I'd done to wear myself out on Monday was repeated stooping and standing, up and down over and over, probably at least once a minute for fifteen to twenty minutes.

I called the psychiatrist yesterday. Her receptionist wanted to know if I'd checked my blood pressure. I did my best not to be really cranky at the question-- How on earth would I go about doing that at home? Even if I were able to drive and had had a car, I wouldn't have been safe to drive yesterday.

When the psychiatrist called back, she suggested stepping back to 50 mg. I didn't have side effects at that dosage but also didn't get any benefit. Sadly, today, I got side effects at 50 mg. Some of that was that Thursdays are difficult and require a lot of picking things up off the floor and a lot of cat herding in the form of making Cordelia clean her room (so that the cleaning lady can mop the floor).

I'm debating whether to step back to 25 mg tomorrow or just to stop the medication for a few days. I had benefit at 75 mg last week. I want that again. I just have to find out if the side effects go away or not. If they don't, the trade off probably isn't worthwhile. There's not much point in more energy if I can't do anything with it.

::sighs:: I want to go to bed, but I have to shower first and then clean off the bed. Scott is currently in the bathroom preparing to shower. He might be done in another half an hour. I'm trying not to be mad at him over this, but Cordelia's been in bed for an hour and a half. He could have gotten in there sooner. I could have, too, but the general house agreement is that he has dibs after a day at work.

I should also put away dinner. I don't want it sitting out any longer. I just don't want to make my headache worse.

Flat | Top-Level Comments Only

From:

sartorias.livejournal.com

Maybe this med is not the one for your constitution. It sounds like it's playing havoc with your balance and perceptions.

From:

the_rck

It may not be which is disappointing since it was so helpful last week.

I'm taking today off from it and possibly Saturday and Sunday as well. I'll try starting over with 25 mg a day next week and see where side effects start. I got enough benefit to be willing to make a serious trial at low doses to see if the side effects decrease. I've got a few weeks' worth of the medication, especially given that I'm cutting the pills to get the right dose.

After that, I suspect we'll look at other stimulants. There might be one with benefits but with less difficult side effects. ::crosses fingers::

From:

jss

My doctor wants me to get a BP cuff and record my numbers from home. I haven't bothered getting one yet, but I should.

I don't know... maybe doctors assume everyone has or wants to have a sphygmomanometer at home.

From:

the_rck

It's not a dreadfully expensive piece of equipment, not on a scale with other medical equipment, but I can't see buying one unless I were planning to use it regularly, probably at least once a week. I'd also have to learn to use one properly. I wonder if there's a digital version out there that won't take three tries to get it right?

From:

jss

There are digital ones that are effectively "Put on cuff, press button, watch readout" though they're not as accurate as looking at a column of mercury and measuring its height. The Wikipedia article isn't bad at a layman's level.

The "big problem" for me is getting the right cuff size; if the cuff is the wrong size, the reading's off (for example, my BP reads nearly 10/5 points higher with a small cuff than with a large cuff).

From:

adrian-turtle.livejournal.com

Mine is a digital version, and it is easy to read. The old version with the column of mercury may be more accurate in an absolute sense, but the extra accuracy is not clinically meaningful for most people. (If your blood pressure changes from 110/70 to 130/85, or vice versa, that matters. If it changes from 120/80 to 121/79, it really does NOT matter.) When I got it, the box said the cuff fit arms from this size to that size (inches). I put the cuff on with velcro, just like at the doctor's office, and there are markings on the cuff saying where to line it up with the artery on the inside of the upper arm. I fasten the velcro overlap in the big middle region, but if I were to gain a lot of weight (or try to fasten it over a sweater), it would read "use larger cuff" next to the fastening point. And if I wrap it around my forearm, or around the local 8-year-old's upper arm, it reads "use smaller cuff." Cuff size seems to be a solved problem. "Take all measurements in the same position and don't hold your breath" took a little work, but isn't rocket science, either.

The tricky thing for me, in getting accurate readings, is that *talking* raises blood pressure. Not just talking about something stressful. Just the act of putting air through vocal cords. I expect it will be a bit of a challenge for TheRCK to measure her b.p. when Cordelia isn't pestering her with questions.

From:

the_rck

Hm. I'm usually chatting with the nurse when they do my blood pressure. Nobody's ever mentioned that I shouldn't.

I'm most worried about various models because it can be hard to get a blood pressure reading for me. Dr. D at UHS used to test new devices on me because he figured that, if one could get my bp, it was a good sign that it would work for most patients. When I have my blood pressure taken at any doctor's office, I expect a minimum of three inflations of the cuff.

From:

adrian-turtle.livejournal.com

>Dr. D at UHS used to test new devices on me because he figured that, if one could get my bp, it was a good sign that it would work for most patients.

Dr. D. is so spectacularly incompetent, his example should not guide you in anything at all. If he directs you to the exit during a fire, seek an alternate source of information.

I found an important difference between digital and mercury bp measurement is that many kinds of improper setup will let the operator read an inaccurate measurement from the mercury column...when the digital monitor will beep and say it can't get a reading. If the blood pressure cuff is way too small, it's impossible to get a reading. Sometimes it's possible to stretch one that's really a little too small, and get an inaccurate reading. I don't know if this has been an issue for you. When I was fat, the standard blood pressure cuff didn't fit, or could be made to stretch around my arm but didn't fit well enough to give a good reading. It's amazing how many nurses told me "that's good enough" for the measurement, instead of going to another room to get the bigger cuff. (I wonder how many people who see their blood pressure go down when they lose weight are just getting accurate blood pressure measurements for the first time in years?)

It's weird, but the equipment made for medical professionals assumes a lot of background knowledge that medical professionals usually aren't thinking about. But the equipment for home use prints the information one needs to know right on the device. So a person doesn't even need to use a tape measure. And the thing about not talking during the measurement (and not eating, drinking, exercising, or smoking, 30 minutes before) was on a little pamphlet in the box. I tested the parts about talking and drinking, and found they change my blood pressure by 10-20 points. My pain level can move it 30 points. And decongestants can push it up another 10-20 points. So it's worth it to me to keep track in a general way, but I don't measure every day when I'm not trying something new. I don't know if blood pressure is really the variable of interest for you. It might be more trouble than it's worth.

From:

the_rck

The thing that concerns me about digital ones is that it generally takes the ones at Taubman three tries to get my blood pressure. One doctor I had, when trying new models of blood pressure devices, particularly liked using me as a guinea pig because it's hard to get my blood pressure.

I'll take a look at the Wikipedia article after I answer these messages.

From:

kyrielle

*offers sympathy and hugs if either is wanted*

From:

the_rck

::hugs back:: Both are appreciated. Thank you.

I was mainly hesitant about the responses I'd get to this because I could tell that I was rather...off balance while writing. The wrong push would probably have made me scream or cry. Hugs generally don't do that.

From:

kyrielle

Understood, and I'm glad. And I hope, if this medicine doesn't work for you at lower doses, that they are able to use the info to figure out one that will work for you.

From:

scribblemoose

*hugs* I hope you get a visit from the spoon fairy soon. Living without energy is so hard.

From:

the_rck

::hugs back:: Thanks. I've been hoping about this medication, so it's hard to see the benefit so close within reach and then...evaporating. A magic wand would be *so* nice.

From:

adrian-turtle.livejournal.com

I'm sorry. *hug* It's so frustrating when it looks like something is helping, and then it turns out to be so problematic. If the problem is related to sleep, it might still have value for occasional use (when you need to push your limits for one day) but you would need to be very careful, obviously. It's so hard to have physical limits getting in the way so badly.

From:

the_rck

My sleep is actually better with the Provigil. I get tired close to my bedtime (sometimes a bit earlier) and fall asleep fast.

The problem's light headedness, a feeling of disconnection and headaches. Not being able to bend over to pick something up off the floor is problem. I can't function if I keep feeling like I might pass out if I'm not careful.