It takes more than a week for Domperidone to get here from the Canadian pharmacy I use. I need to remember this and re-order before I start my last box of 100 pills, which lasts me about 12 days.
Even a few days of skipped doses -- and no days of missing altogether -- leave me feeling quite sick.
I hope someday I won't need this medicine any more, but at this point that doesn't seem likely. But at least I can do a better job with ordering my refills so I don't screw it up again.
Showing posts with label Domperidone. Show all posts
Showing posts with label Domperidone. Show all posts
Monday, May 25, 2009
Sunday, January 06, 2008
that didn't take long
On Thursday, I got a prescription for Reglan to help with my gastroparesis. I started it Thursday evening and took the prescribed 4 doses on Friday... and could barely keep my head up.
Thursday I was tired anyway, having been up stupid-late the night before. So Thursday night I went to bed at a decent hour and got plenty of sleep, and still Friday I was like a zombie. A zombie with bizarre emotional reactions, like laughing too long at something that would ordinarily merit a smile or at the most a chuckle.
Needless to say, I quit taking the stuff.
Yesterday's research brought me to a support forum where there was plenty of discussion of gastroparesis, Reglan, and all that jazz. I'd say the majority of people who talked about trying Reglan couldn't deal with the side effects, but some were helped by Domperidone, with fewer side effects.
Gastroparesis is caused either by damage to the vagus nerve*, or by a problem with the muscles that control the stomach's normal churning motions. Many cases are idiopathic, but hypothyroidism is linked to the condition. I even found an abstract that demonstrated that thyca patients who go hypo (become extremely hypothyroid) for their whole body scans develop gastroparesis during their hypo phase. I don't know why it took me so long to put these facts together, but I realized the following that may have something to do with my current condition:
1) I spent a good deal of time last year hypothyroid, because of the great med experiment in which I discontinued my Cytomel, and during which my endocrinologist was strangely loathe to increase my Levoxyl.
2) I had a Thyrogen-stimulated whole body scan in August. It's true that I did not become systemically hypothyroid, but my TSH was outrageous (159!), and I felt off for a while after that. So off, as a matter of fact, that I finally went back on my old Cytomel+Levoxyl regimen in early September.
3) I have no idea what my levels are, since I have yet to see my November thyroid panel results which were run to see how the return to the old regimen was suiting me. For all I know, I've been hypo this whole time. There have certainly been times when I've felt hypo -- cold all the time, skin drier than paper, funky hypo half-brows -- but I'm generally not fatigued, nor am I depressed or brain-fogged... that I've noticed, even though there has been a lot of stress lately.
I'm going tomorrow for bloodwork -- a thyroid panel from my endo, and complete blood work from my g/e doc -- so we'll get a look at what's really going on there. I'm actually seeing my endocrinologist on Friday, and I'm curious as to what my numbers look like, I haven't seen them since August. (She's an idiot about releasing them to her patients through the mail.)
I'm hopeful that the gastropareris is a result of being slightly hypo for many months, and that perhaps it can resolve on its own if I can tweak my levels appropriately.
---
* I could also have sustained damage to my vagus nerve during my surgeries; I know that I sustained some damage to my recurrent laryngeal nerve, which is a branch of the vagus. I really don't want to think about that, but it's something I'll discuss with my ENT when I see him on Thursday.
Thursday I was tired anyway, having been up stupid-late the night before. So Thursday night I went to bed at a decent hour and got plenty of sleep, and still Friday I was like a zombie. A zombie with bizarre emotional reactions, like laughing too long at something that would ordinarily merit a smile or at the most a chuckle.
Needless to say, I quit taking the stuff.
Yesterday's research brought me to a support forum where there was plenty of discussion of gastroparesis, Reglan, and all that jazz. I'd say the majority of people who talked about trying Reglan couldn't deal with the side effects, but some were helped by Domperidone, with fewer side effects.
Gastroparesis is caused either by damage to the vagus nerve*, or by a problem with the muscles that control the stomach's normal churning motions. Many cases are idiopathic, but hypothyroidism is linked to the condition. I even found an abstract that demonstrated that thyca patients who go hypo (become extremely hypothyroid) for their whole body scans develop gastroparesis during their hypo phase. I don't know why it took me so long to put these facts together, but I realized the following that may have something to do with my current condition:
1) I spent a good deal of time last year hypothyroid, because of the great med experiment in which I discontinued my Cytomel, and during which my endocrinologist was strangely loathe to increase my Levoxyl.
2) I had a Thyrogen-stimulated whole body scan in August. It's true that I did not become systemically hypothyroid, but my TSH was outrageous (159!), and I felt off for a while after that. So off, as a matter of fact, that I finally went back on my old Cytomel+Levoxyl regimen in early September.
3) I have no idea what my levels are, since I have yet to see my November thyroid panel results which were run to see how the return to the old regimen was suiting me. For all I know, I've been hypo this whole time. There have certainly been times when I've felt hypo -- cold all the time, skin drier than paper, funky hypo half-brows -- but I'm generally not fatigued, nor am I depressed or brain-fogged... that I've noticed, even though there has been a lot of stress lately.
I'm going tomorrow for bloodwork -- a thyroid panel from my endo, and complete blood work from my g/e doc -- so we'll get a look at what's really going on there. I'm actually seeing my endocrinologist on Friday, and I'm curious as to what my numbers look like, I haven't seen them since August. (She's an idiot about releasing them to her patients through the mail.)
I'm hopeful that the gastropareris is a result of being slightly hypo for many months, and that perhaps it can resolve on its own if I can tweak my levels appropriately.
---
* I could also have sustained damage to my vagus nerve during my surgeries; I know that I sustained some damage to my recurrent laryngeal nerve, which is a branch of the vagus. I really don't want to think about that, but it's something I'll discuss with my ENT when I see him on Thursday.
Thursday, January 03, 2008
I'll try it, but I have my doubts
I saw the doctor today, and now have a diagnosis: my stomach doesn't empty properly. The doctor thinks I had an infection at some point and that led to this problem, technically called gastroparesis. It usually hits diabetics and some cancer patients, but there is a tiny percentage of people who get it following an infection, including, apparently, me.
I'm on a new drug to treat it, Reglan. The list of side effects (including dizziness, drowsiness, depression, suicidal ideation) is scary -- obviously I will have to pay attention to these things. If the dizzy/drowsy thing happens, I simply can't take it, because, you know, I have a life and it's not as if I can just give up driving.
Reglan, or metoclopramide, crosses the blood-brain barrier which is why it can cause these screwy side-effects. There's a drug available in Canada, Domperidone, that has much the same effect, but doesn't cross the barrier, and so has far fewer side effects. The only problem is, the FDA hasn't approved it -- and my g/e doc has no idea why they haven't. Apparently it's not difficult to get, though.
DH is highly skeptical that this is going to work: Oh, so you'll just go on this medication for 3 months and then you'll be fine? Right. I can see his point. I'm also concerned about the side effects, always thinking about that cost-v-benefit equation. How much is this really going to help to stop my acid reflux? The doctor suspects some muscle weakness in the ring muscle at the top of my stomach, but it's a chicken/egg situation: the slow emptying is stressing the ring muscle, so if the emptying improves, maybe the muscle can get better and that will help, too.
Possibly the worst thing about this new drug is that I'm supposed to take it 30 minutes before I eat, 3 times a day. I do not eat on anything even remotely like a schedule, and now I'm supposed to figure out when I'm eating, subtract 30 minutes from that, and remember to take this stuff? Breakfast and supper shouldn't be too difficult, but lunch is always going to be a problem. At least it doesn't interfere with any other medications or supplements (at least not the ones I'm taking.)
In the meantime, I've got two different acid-blockers to try out as well. This is going to take a little while to figure out. I took one at dinner and felt a little spacy, but I had been feeling exhausted all day. Am I just tired, or is it the new meds? We'll see what happens tomorrow.
I'm on a new drug to treat it, Reglan. The list of side effects (including dizziness, drowsiness, depression, suicidal ideation) is scary -- obviously I will have to pay attention to these things. If the dizzy/drowsy thing happens, I simply can't take it, because, you know, I have a life and it's not as if I can just give up driving.
Reglan, or metoclopramide, crosses the blood-brain barrier which is why it can cause these screwy side-effects. There's a drug available in Canada, Domperidone, that has much the same effect, but doesn't cross the barrier, and so has far fewer side effects. The only problem is, the FDA hasn't approved it -- and my g/e doc has no idea why they haven't. Apparently it's not difficult to get, though.
DH is highly skeptical that this is going to work: Oh, so you'll just go on this medication for 3 months and then you'll be fine? Right. I can see his point. I'm also concerned about the side effects, always thinking about that cost-v-benefit equation. How much is this really going to help to stop my acid reflux? The doctor suspects some muscle weakness in the ring muscle at the top of my stomach, but it's a chicken/egg situation: the slow emptying is stressing the ring muscle, so if the emptying improves, maybe the muscle can get better and that will help, too.
Possibly the worst thing about this new drug is that I'm supposed to take it 30 minutes before I eat, 3 times a day. I do not eat on anything even remotely like a schedule, and now I'm supposed to figure out when I'm eating, subtract 30 minutes from that, and remember to take this stuff? Breakfast and supper shouldn't be too difficult, but lunch is always going to be a problem. At least it doesn't interfere with any other medications or supplements (at least not the ones I'm taking.)
In the meantime, I've got two different acid-blockers to try out as well. This is going to take a little while to figure out. I took one at dinner and felt a little spacy, but I had been feeling exhausted all day. Am I just tired, or is it the new meds? We'll see what happens tomorrow.
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