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Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 8 of 8. This is the beginning of the thread.
Posted by Jet on January 25, 2002, at 9:03:36
Elizabeth: I would appreciate it very much if you would read my post. You don't have to respond if you don't want to, that would be nice of course, but I would never want you to feel like you had to.
I'm sure that you don't read every post and this one was meant for you to read. I do need your help and experience in this issue.
Thanks - Jet
Posted by Elizabeth on January 30, 2002, at 13:50:50
In reply to Elizabeth - Please read: Helpless in Seattle, posted by Jet on January 25, 2002, at 9:03:36
Hi. What's up?
Sometimes I'll miss a post that I might otherwise have responded to; this isn't anything personal, it just means I haven't been reading the board for a few days. Apologies if you posted something that was meant for me to read and I missed it.
-e
Posted by Jet on February 1, 2002, at 11:01:57
In reply to Re: Helpless in Seattle » Jet, posted by Elizabeth on January 30, 2002, at 13:50:50
> Hi. What's up?
> You responded to this down below thanks! I do need to ask a few more questions though. I don't know if you will see it here, but here goes:I did see my medical doc and she was great. She said that she understood and she gave me a prescr. for percocet for now. She is going to call Dr. Bodkin. I will most likely have to call and remind her. You know how busy docs are. But she doesn't want to see me in pain - mental or physical. I take 2 of them a day and that helps some. I do want to try the Bupe spray, but she doesn't know anything about it and I think she is a bit leary of it. I am hoping that she talks to Dr. Bodkin and maybe if I tell her I am willing to get it from a pharmacy where he gets it from, she would do it. What do you think about that? That way, the pharmacist would not make a big deal about it. It could just be mailed to me then. I don't even know how I am going to tolerate it anyway, so I can try it and if it works well, keep getting it thru the mail.
Anyway, I am going to wait for awhile and then ask her about that. Thanks for your input. I do appreciate all of you on this board. Nobody understands like you guys. Normal brains out there have no idea what we go through and think that we just make this stuff up or something. It makes me weary. I have a wonderful family - thank heavens. Jet
> Sometimes I'll miss a post that I might otherwise have responded to; this isn't anything personal, it just means I haven't been reading the board for a few days. Apologies if you posted something that was meant for me to read and I missed it.
>
> -e
Posted by Elizabeth on February 1, 2002, at 23:28:49
In reply to Re: Helpless in Seattle, posted by Jet on February 1, 2002, at 11:01:57
Hi. It sounds like you have a great doctor. That's really cool.
A few clarifications:
There isn't a separate nasal spray formulation of buprenorphine in the U.S., just the injectable solution. You draw it up into a syringe, remove the needle (important step), and squirt it into your nose. You need to be lying down with your head tilted back. Dr. Bodkin can explain in more detail (he recommended the technique to me). Alternatively, you could inject it if your doctor is okay with that.
You can get it from any retail pharmacy; they just have to order it from their wholesaler, which rarely takes more than one or two business days. I've never had a pharmacist give me a hard time about it.
-elizabeth
Posted by Jet on February 3, 2002, at 13:18:31
In reply to Re: Helpless in Seattle » Jet, posted by Elizabeth on February 1, 2002, at 23:28:49
> Hi. It sounds like you have a great doctor. That's really cool.
>
> A few clarifications:
>
> There isn't a separate nasal spray formulation of buprenorphine in the U.S., just the injectable solution. You draw it up into a syringe, remove the needle (important step), and squirt it into your nose. You need to be lying down with your head tilted back. Dr. Bodkin can explain in more detail (he recommended the technique to me). Alternatively, you could inject it if your doctor is okay with that.
>
> You can get it from any retail pharmacy; they just have to order it from their wholesaler, which rarely takes more than one or two business days. I've never had a pharmacist give me a hard time about it.
>
> -elizabethThanks for the info on the Bupe. So, I have to lay down and squirt the Bupe up my nose? Does it burn? Oh well, whatever it takes to get and keep me out of bed and back with the living! I don't have a place to lay down at work, I would have to lay down in the bathroom floor - ick. Can you sit on the toilet and put your head back?
How long does each dose last for you? I asked you in an earlier post if I could take it on an as needed basis. And you said yes. That probably isnt a good idea with this drug, is it? You should take it more consistently, at certain times of the day, to keep on an even keel. That is my goal, to keep on an even keel. You see, since starting the Topa, I am almost there, I am beginning to see a little hope. I don't swing as much now. I am up to 400 mg. now, and am not swinging as much, but still swing some. I am just not going to settle anymore. I want to live as normal of life as I can. I have tried so hard and spent so much money to find solutions for myself and family so we don't have to live with me in bed sleeping or forcing myself to function. So, now I am going to spend my insurance companie's money to find help to keep me out of bed!
After talking it over with my boyfriend, we have agreed that I need to try it now and not wait. I am taking the Percocet twice and some days three times a day and we are both concerned with what the effects the Tylenol will have on my liver. Plus, the mood lifting effect is very short, sometimes only lasting an hour after the dose is taken - not worth the liver-damage risk. So I am going to ask her to talk with Dr. Bodkin and let me try it now and not wait like I had planned. At least I think she is willing now. I also have arthritis and she thinks I have fibromyagia & chronic fatigue. Some days, I just ache all over. I did test positive for the Epstein Barr virus - but so does 80% of the population. She thinks that my depression is caused from living in the Northwest and if I would just move to someplace sunny I would be fine. I don't agree with her there, because my family is full of depressed people. Also, I do live here and have no plans of moving to Hawaii anytime soon and need to deal with here and now.
Ok, not much more to do but just ask her and see what happens. Thanks so much for you time and patience with me. I appreciate you finding this post also. One more thing. The only other OTC med I take is Melatonin. I have a really hard time falling asleep and find that this really helps me. I read though on the boards that someone with my problems should not take this that it will make me worse. What do you think about that? I know that you take Ambien. Do you think that would be better for me? I appreciate your advice. Jet.
Posted by Jet on February 3, 2002, at 16:08:10
In reply to Not so Helpless, posted by Jet on February 3, 2002, at 13:18:31
> > Hi. It sounds like you have a great doctor. That's really cool.
> >
> > A few clarifications:
> >
> > There isn't a separate nasal spray formulation of buprenorphine in the U.S., just the injectable solution. You draw it up into a syringe, remove the needle (important step), and squirt it into your nose. You need to be lying down with your head tilted back. Dr. Bodkin can explain in more detail (he recommended the technique to me). Alternatively, you could inject it if your doctor is okay with that.
> >
> > You can get it from any retail pharmacy; they just have to order it from their wholesaler, which rarely takes more than one or two business days. I've never had a pharmacist give me a hard time about it.
> >
> > -elizabeth
>
> Thanks for the info on the Bupe. So, I have to lay down and squirt the Bupe up my nose? Does it burn? Oh well, whatever it takes to get and keep me out of bed and back with the living! I don't have a place to lay down at work, I would have to lay down in the bathroom floor - ick. Can you sit on the toilet and put your head back?
>
> How long does each dose last for you? I asked you in an earlier post if I could take it on an as needed basis. And you said yes. That probably isnt a good idea with this drug, is it? You should take it more consistently, at certain times of the day, to keep on an even keel. That is my goal, to keep on an even keel. You see, since starting the Topa, I am almost there, I am beginning to see a little hope. I don't swing as much now. I am up to 400 mg. now, and am not swinging as much, but still swing some. I am just not going to settle anymore. I want to live as normal of life as I can. I have tried so hard and spent so much money to find solutions for myself and family so we don't have to live with me in bed sleeping or forcing myself to function. So, now I am going to spend my insurance companie's money to find help to keep me out of bed!
>
> After talking it over with my boyfriend, we have agreed that I need to try it now and not wait. I am taking the Percocet twice and some days three times a day and we are both concerned with what the effects the Tylenol will have on my liver. Plus, the mood lifting effect is very short, sometimes only lasting an hour after the dose is taken - not worth the liver-damage risk. So I am going to ask her to talk with Dr. Bodkin and let me try it now and not wait like I had planned. At least I think she is willing now. I also have arthritis and she thinks I have fibromyagia & chronic fatigue. Some days, I just ache all over. I did test positive for the Epstein Barr virus - but so does 80% of the population. She thinks that my depression is caused from living in the Northwest and if I would just move to someplace sunny I would be fine. I don't agree with her there, because my family is full of depressed people. Also, I do live here and have no plans of moving to Hawaii anytime soon and need to deal with here and now.
>
> Ok, not much more to do but just ask her and see what happens. Thanks so much for you time and patience with me. I appreciate you finding this post also. One more thing. The only other OTC med I take is Melatonin. I have a really hard time falling asleep and find that this really helps me. I read though on the boards that someone with my problems should not take this that it will make me worse. What do you think about that? I know that you take Ambien. Do you think that would be better for me? I appreciate your advice. Jet.A few More Questions for Elizabeth:
I have been looking at old posts to get information before I talk with my medical doc. I was looking back at posts from July of 2001. You were talking about going off Bupe. Have you? You were talking about trying Despirime (sp?). Did you ever try that and if so, did it work for you? The more I read on this board, the more I am able to identify myself. I also think that I may have anhedonia, but have done a very nice job of faking it all of my life. I have had an emptyness inside of me always that I have tried to fill up with spending money, taking drugs, eating carbs, etc. I have a sadness inside that lifts a couple times a year naturally that is beautiful. When it is there by itself, it is truely amazing and god-like. It must be what normal people feel on a daily basis. I get that "normal" feeling from taking drugs. I don't have that feeling by myself.
Thank you for putting your feelings out there like you have. Without you sharing with all of us how you feel and how you have felt since you were a young girl, I would not have been able to identify this in myself. I should be paying you instead of my pdoc, who has never once tried to get this information out of me. Now, I am going to go and tell him this and tell him it was you who enlightened me. It should go over well....
Another question for you. If you were me, would you maybe try adding an AD and take the Percocet when needed? If I start the Bupe, it seems as though I have to take it regularly because of the withdrawl issues, right? I just don't know what to do at this point. I guess I would like to know if you are still taking it and what else you take. Did you ever try the Topamax?
Thanks for your help Elizabeth.
Jet
Posted by Elizabeth on February 4, 2002, at 1:16:12
In reply to Not so Helpless, posted by Jet on February 3, 2002, at 13:18:31
> Thanks for the info on the Bupe. So, I have to lay down and squirt the Bupe up my nose? Does it burn?
Nope, it feels just like water. You also need to hyperextend your neck (i.e., tilt back your head) so it won't all just go straight down your throat. Chances are you'll get a taste of it now and then -- it's slightly sweet, nothing gross.
> I don't have a place to lay down at work, I would have to lay down in the bathroom floor - ick. Can you sit on the toilet and put your head back?
This is a big problem with this route of administration: the midday dose. What kind of place do you work at? There must be someplace better than the bathroom floor where you could lie down! (I don't know about sitting with your head tilted back, never tried it. I'd expect it to be less effective, but you might be able to make it work.)
> How long does each dose last for you?
About 5 hours, give or take.
> I asked you in an earlier post if I could take it on an as needed basis. And you said yes. That probably isnt a good idea with this drug, is it?
I think it might work fine. If you find you need it very often, though, you should come up with a regular schedule so as to keep things, as you say, on an even keel. I'm not sure how great it would be as a mood stabilizer. Anyway, I think it might be a good idea to try taking it "as-needed" at first, and move on to taking it regularly only if you find that you need to.
> After talking it over with my boyfriend, we have agreed that I need to try it now and not wait. I am taking the Percocet twice and some days three times a day and we are both concerned with what the effects the Tylenol will have on my liver.
Probably not a problem -- you're not getting *that* much of it, although it's really best in general not to take extra medicine that you don't need. I'd be more concerned about dependence, and possibly tolerance, to the oxycodone, especially since you're taking it so frequently.
> Plus, the mood lifting effect is very short, sometimes only lasting an hour after the dose is taken - not worth the liver-damage risk.
OxyContin, a sustained-release formulation of oxycodone (no Tylenol), is a 3-times-a-day med. That would definitely be preferable to Percocet, although I think buprenorphine would be better to try first.
> I also have arthritis and she thinks I have fibromyagia & chronic fatigue. Some days, I just ache all over.
That gives her a lot of reasons for prescribing an opioid. Depression is often accompanied by pain syndromes, and Dr. Bodkin suggested that buprenorphine would be particularly suitable for this kind of syndrome. Although unless there's some specific reason not to (sorry, I can't remember all the specifics of your case), I think you should consider giving Ultram a try first. It's much easier to get and easier to use. Its efficacy is mostly due to a long-acting metabolite, and this makes it potentially very useful for chronic pain. It isn't so helpful for taking as-needed because it takes several hours to kick in; you need to maintain sufficient levels of tramadol and O-desmethyltramadol (the aforementioned metabolite) by taking it about 4 times a day (not a big deal since it's just a pill).
I have chronic pain too (back-neck-shoulder). Lately I've been considering finding a pain specialist who will prescribe buprenorphine for me so I don't have to keep hunting for a psychiatrist who's willing to prescribe it.
> She thinks that my depression is caused from living in the Northwest and if I would just move to someplace sunny I would be fine. I don't agree with her there, because my family is full of depressed people.
Where do they live? Is there a seasonal component in your depression? (Mine's definitely not seasonal: some of my hardest times have been in the summer.)
> The only other OTC med I take is Melatonin. I have a really hard time falling asleep and find that this really helps me. I read though on the boards that someone with my problems should not take this that it will make me worse. What do you think about that?
What did you hear exactly? I think melatonin can make some people feel worse, other better. Of course I had a "paradoxical" reaction to it when I tried it (it kept me awake all night). < g > If you feel it helps you, I'd say stick with it.
Okay, on to your other post:
> I was looking back at posts from July of 2001. You were talking about going off Bupe. Have you? You were talking about trying Despirime (sp?). Did you ever try that and if so, did it work for you?
Desipramine did help, but it turned out I wasn't metabolizing it normally and I would have needed to have serum levels monitored regularly if I were going to keep taking it. The thing that really made me decide to go off it was that I had a seizure.
I'd like to be able to stop taking buprenorphine, or to take it occasionally (as I do Xanax). Besides being hard to use, it has a lot of side effects, some of which are pretty disruptive and difficult to manage (GI distress, amenorrhea, pruritis, "jitters" (not anxiety, but psychomotor activation to a degree that's sometimes uncomfortable), etc.). If the Effexor is a big success, I may be able to reduce my use of buprenorphine or stop taking it altogether. I don't have any expectations either way, though, and I'm prepared to live with the buprenorphine if I need to.
> I have had an emptyness inside of me always that I have tried to fill up with spending money, taking drugs, eating carbs, etc.
That's pretty common, although it's not quite the same as full-blown anhedonia: some people don't get much pleasure from their lives ("emptiness" is a word often used to describe this), so they go to extremes -- overeating, gambling, excessive shopping, drugs, and other "thrill-seeking" behaviors -- because that's the only way they can feel good.
> Thank you for putting your feelings out there like you have.
It's not always easy, so I'm glad you find it helpful.
> I should be paying you instead of my pdoc, who has never once tried to get this information out of me.
Well, I guess if you *want* to.... :-)
> Now, I am going to go and tell him this and tell him it was you who enlightened me. It should go over well....
I'll be very amused to learn the outcome of that discussion!
> Another question for you. If you were me, would you maybe try adding an AD and take the Percocet when needed?
It's *so* hard to make judgments like that. It might help. I don't know. What's your experience been with ADs?
> If I start the Bupe, it seems as though I have to take it regularly because of the withdrawl issues, right?
No, I don't think so. Withdrawal happens if you take it often enough that your body becomes used to having it and then stop taking it. (In any case, buprenorphine withdrawal symptoms are much milder than those of, say, oxycodone.)
> I just don't know what to do at this point. I guess I would like to know if you are still taking it and what else you take.
I presently take:
Effexor XR 225 mg q.d.
buprenorphine 1.0 mL (0.3 mg) t.i.d.
Trileptal 300 mg t.i.d.
Xanax 1-2 mg p.r.n. [anxiety, over-activation]
propranolol 10-20 mg p.r.n. [tremor, activation]and the occasional antihistamine, usually promethazine (for nausea and "the itchies"). (This is not counting OTC stuff -- docusate and sometimes senna for constipation, ChlorTrimeton (a milder antihistamine), antacid/antigas pills for GI problems, etc.) I've thought about asking for trazodone or something for the "jitters" that come with buprenorphine. Also considering going back on Ambien, since the Effexor seems to be causing more sleep problems.
> Did you ever try the Topamax?
No. I'm not bipolar; I need anticonvulsants for seizure prevention, and Trileptal and its older cousin Tegretol are the main treatments for complex partial seizures (the kind I'm supposedly having). We talked about different anticonvulsants, but my doctor wasn't into Topamax because he says it seems to cause cognitive problems for a lot of people.
-elizabeth
Posted by Jet on February 4, 2002, at 23:00:38
In reply to Re: Not so Helpless :-) » Jet, posted by Elizabeth on February 4, 2002, at 1:16:12
> > Thanks for the info on the Bupe. So, I have to lay down and squirt the Bupe up my nose? Does it burn?
>
> Nope, it feels just like water. You also need to hyperextend your neck (i.e., tilt back your head) so it won't all just go straight down your throat. Chances are you'll get a taste of it now and then -- it's slightly sweet, nothing gross.
>
> > I don't have a place to lay down at work, I would have to lay down in the bathroom floor - ick. Can you sit on the toilet and put your head back?
>
> This is a big problem with this route of administration: the midday dose. What kind of place do you work at? There must be someplace better than the bathroom floor where you could lie down! (I don't know about sitting with your head tilted back, never tried it. I'd expect it to be less effective, but you might be able to make it work.)
>
> > How long does each dose last for you?
>
> About 5 hours, give or take.
>
> > I asked you in an earlier post if I could take it on an as needed basis. And you said yes. That probably isnt a good idea with this drug, is it?
>
> I think it might work fine. If you find you need it very often, though, you should come up with a regular schedule so as to keep things, as you say, on an even keel. I'm not sure how great it would be as a mood stabilizer. Anyway, I think it might be a good idea to try taking it "as-needed" at first, and move on to taking it regularly only if you find that you need to.
>
> > After talking it over with my boyfriend, we have agreed that I need to try it now and not wait. I am taking the Percocet twice and some days three times a day and we are both concerned with what the effects the Tylenol will have on my liver.
>
> Probably not a problem -- you're not getting *that* much of it, although it's really best in general not to take extra medicine that you don't need. I'd be more concerned about dependence, and possibly tolerance, to the oxycodone, especially since you're taking it so frequently.
>
> > Plus, the mood lifting effect is very short, sometimes only lasting an hour after the dose is taken - not worth the liver-damage risk.
>
> OxyContin, a sustained-release formulation of oxycodone (no Tylenol), is a 3-times-a-day med. That would definitely be preferable to Percocet, although I think buprenorphine would be better to try first.
>
> > I also have arthritis and she thinks I have fibromyagia & chronic fatigue. Some days, I just ache all over.
>
> That gives her a lot of reasons for prescribing an opioid. Depression is often accompanied by pain syndromes, and Dr. Bodkin suggested that buprenorphine would be particularly suitable for this kind of syndrome. Although unless there's some specific reason not to (sorry, I can't remember all the specifics of your case), I think you should consider giving Ultram a try first. It's much easier to get and easier to use. Its efficacy is mostly due to a long-acting metabolite, and this makes it potentially very useful for chronic pain. It isn't so helpful for taking as-needed because it takes several hours to kick in; you need to maintain sufficient levels of tramadol and O-desmethyltramadol (the aforementioned metabolite) by taking it about 4 times a day (not a big deal since it's just a pill).
>
> I have chronic pain too (back-neck-shoulder). Lately I've been considering finding a pain specialist who will prescribe buprenorphine for me so I don't have to keep hunting for a psychiatrist who's willing to prescribe it.
>
> > She thinks that my depression is caused from living in the Northwest and if I would just move to someplace sunny I would be fine. I don't agree with her there, because my family is full of depressed people.
>
> Where do they live? Is there a seasonal component in your depression? (Mine's definitely not seasonal: some of my hardest times have been in the summer.)
>
> > The only other OTC med I take is Melatonin. I have a really hard time falling asleep and find that this really helps me. I read though on the boards that someone with my problems should not take this that it will make me worse. What do you think about that?
>
> What did you hear exactly? I think melatonin can make some people feel worse, other better. Of course I had a "paradoxical" reaction to it when I tried it (it kept me awake all night). < g > If you feel it helps you, I'd say stick with it.
>
> Okay, on to your other post:
>
> > I was looking back at posts from July of 2001. You were talking about going off Bupe. Have you? You were talking about trying Despirime (sp?). Did you ever try that and if so, did it work for you?
>
> Desipramine did help, but it turned out I wasn't metabolizing it normally and I would have needed to have serum levels monitored regularly if I were going to keep taking it. The thing that really made me decide to go off it was that I had a seizure.
>
> I'd like to be able to stop taking buprenorphine, or to take it occasionally (as I do Xanax). Besides being hard to use, it has a lot of side effects, some of which are pretty disruptive and difficult to manage (GI distress, amenorrhea, pruritis, "jitters" (not anxiety, but psychomotor activation to a degree that's sometimes uncomfortable), etc.). If the Effexor is a big success, I may be able to reduce my use of buprenorphine or stop taking it altogether. I don't have any expectations either way, though, and I'm prepared to live with the buprenorphine if I need to.
>
> > I have had an emptyness inside of me always that I have tried to fill up with spending money, taking drugs, eating carbs, etc.
>
> That's pretty common, although it's not quite the same as full-blown anhedonia: some people don't get much pleasure from their lives ("emptiness" is a word often used to describe this), so they go to extremes -- overeating, gambling, excessive shopping, drugs, and other "thrill-seeking" behaviors -- because that's the only way they can feel good.
>
> > Thank you for putting your feelings out there like you have.
>
> It's not always easy, so I'm glad you find it helpful.
>
> > I should be paying you instead of my pdoc, who has never once tried to get this information out of me.
>
> Well, I guess if you *want* to.... :-)
>
> > Now, I am going to go and tell him this and tell him it was you who enlightened me. It should go over well....
>
> I'll be very amused to learn the outcome of that discussion!
>
> > Another question for you. If you were me, would you maybe try adding an AD and take the Percocet when needed?
>
> It's *so* hard to make judgments like that. It might help. I don't know. What's your experience been with ADs?
>
> > If I start the Bupe, it seems as though I have to take it regularly because of the withdrawl issues, right?
>
> No, I don't think so. Withdrawal happens if you take it often enough that your body becomes used to having it and then stop taking it. (In any case, buprenorphine withdrawal symptoms are much milder than those of, say, oxycodone.)
>
> > I just don't know what to do at this point. I guess I would like to know if you are still taking it and what else you take.
>
> I presently take:
> Effexor XR 225 mg q.d.
> buprenorphine 1.0 mL (0.3 mg) t.i.d.
> Trileptal 300 mg t.i.d.
> Xanax 1-2 mg p.r.n. [anxiety, over-activation]
> propranolol 10-20 mg p.r.n. [tremor, activation]
>
> and the occasional antihistamine, usually promethazine (for nausea and "the itchies"). (This is not counting OTC stuff -- docusate and sometimes senna for constipation, ChlorTrimeton (a milder antihistamine), antacid/antigas pills for GI problems, etc.) I've thought about asking for trazodone or something for the "jitters" that come with buprenorphine. Also considering going back on Ambien, since the Effexor seems to be causing more sleep problems.
>
> > Did you ever try the Topamax?
>
> No. I'm not bipolar; I need anticonvulsants for seizure prevention, and Trileptal and its older cousin Tegretol are the main treatments for complex partial seizures (the kind I'm supposedly having). We talked about different anticonvulsants, but my doctor wasn't into Topamax because he says it seems to cause cognitive problems for a lot of people.
>
> -elizabethThanks so much Elizabeth for taking the time to answer all of my questions. I'll let you know what I decide to do and what my doctor says. Jet
This is the end of the thread.
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