I'm not very sure what to say either.. I really wish I had some knowledge to share..
Definitely try to back down on the Methadone. I was hoping your dose wouldn't even have to get that high, but now that you are not taking the hormones, hopefully things will calm back down..
Maybe it will take some time for your body to readjust from the hormones, I'm not sure.. you should always consult your doctor and ask questions tho, don't be afraid or procrastinate because he is your best resource for the answers you are seeking..
I don't know what your doses schedule is like or how much you take at one time, but definitely try to reduce the Methadone. Don't rush it, reduce your dose gradually over a period of a few weeks if you can. Shave off 1 or 2mgs from your total daily intake at a time until you are at least down to 15mgs a day.
I notice a difference between my standard 15mg dose, and when I take one or two extra. Symptoms may pop up from time to time but they never feel horrible or troubling and fade away once I try to ignore them. Usually I'm good until the next day as well..
I know I have had issues with temperature fluctuations from time to time, and it seems to point to Methadone, but my usage and body is totally different from yours as well. It may just be you readjusting from the lack of hormones - or maybe they even triggered something else going on that will run its course.
Methadone Users
OK, I am having a strange panic attack. I started with some stomach problems yesterday - that sort of sulfurous burp.
I just woke up and I am a little dizzy, a alittle nauseous and very very anxious. It feels like I imagine it must feel to have missed a dose. All I did was take 2.5 mg less 5 hours ago. Should I be feeling this bad? I'm having sotmach cramps and sweating and I am fidgeting like cdrazay7.
I took som emilk of m\agnisia about 2 hrs fter trhe methadone. I wonder if it blocked my methadone. I;m sweating bdly i dont know if i shoujld gto to ER.
I just woke up and I am a little dizzy, a alittle nauseous and very very anxious. It feels like I imagine it must feel to have missed a dose. All I did was take 2.5 mg less 5 hours ago. Should I be feeling this bad? I'm having sotmach cramps and sweating and I am fidgeting like cdrazay7.
I took som emilk of m\agnisia about 2 hrs fter trhe methadone. I wonder if it blocked my methadone. I;m sweating bdly i dont know if i shoujld gto to ER.
Last night I took a quarter of the smallest klonopin dose that you can get from a pharmacy. I eventually did fall asleep again.
OK, I'm feeling well enough to function at work. Strange thing: I can stay awake do drive if I eat someting while I am drifving. If I don't, my eyes cross, then they slam shut and I roll on to the road's shoulder. Drinking something doesnt work and chewing gum doesnt either - I have to be eating something, or doing something else while I'm driving like rummaging around in my purse for something or glancing at a magazine.
It is hot as He!! in our office this week. It is NOT helping me.
Update on how things went in March: The IVF went really well at first- I had 11 eggs retrieved, 9 were mature, and 6 fertilized. After 3 days, 2 of the 6 embryos stopped dividing, so they put all of the remaining four back in my body. One of them wasn't looking like it would make it. The doc guaranteed me that I didn't have to worry about having triplets or quadruplets. (I guess the embryos looked that bad.) For my age, in the U.S., it is typical to put back 2 or 3 embryos. My hormone levels were monitored and looked good the following week. Two weeks after the embryos were put back, I got a positive blood pregnancy test. However, the HCG (the hormone measured by a pregnancy test) did not rise quickly enough and began to fall. The doc said that this happens when none of the embryos are healthy enough to make it. Now I take at least a month off before we can start again.
The methadone worked really well once my dose was high enough. I did have a lot of sweating at night since february. I started with hot flashes a couple of weeks ago but thought it was the hormones. I started to have nausea and dizziness on the day that my HCG would have started to fall. This makes sense knowing what the neurologist said: pregnancy hormones change the way the methadone is metabolized by the liver. So, now that there are no pregnancy hormones, my body is back to metabolizing it normally and I have too much of it in my bloodstream.
I called the doc around 8 am and left a message asking if we could bring the dose down and how he would like me to go about doing it.
I fall asleep spontaneously while I am sitting at the computer!
OK, I'm feeling well enough to function at work. Strange thing: I can stay awake do drive if I eat someting while I am drifving. If I don't, my eyes cross, then they slam shut and I roll on to the road's shoulder. Drinking something doesnt work and chewing gum doesnt either - I have to be eating something, or doing something else while I'm driving like rummaging around in my purse for something or glancing at a magazine.
It is hot as He!! in our office this week. It is NOT helping me.
Update on how things went in March: The IVF went really well at first- I had 11 eggs retrieved, 9 were mature, and 6 fertilized. After 3 days, 2 of the 6 embryos stopped dividing, so they put all of the remaining four back in my body. One of them wasn't looking like it would make it. The doc guaranteed me that I didn't have to worry about having triplets or quadruplets. (I guess the embryos looked that bad.) For my age, in the U.S., it is typical to put back 2 or 3 embryos. My hormone levels were monitored and looked good the following week. Two weeks after the embryos were put back, I got a positive blood pregnancy test. However, the HCG (the hormone measured by a pregnancy test) did not rise quickly enough and began to fall. The doc said that this happens when none of the embryos are healthy enough to make it. Now I take at least a month off before we can start again.
The methadone worked really well once my dose was high enough. I did have a lot of sweating at night since february. I started with hot flashes a couple of weeks ago but thought it was the hormones. I started to have nausea and dizziness on the day that my HCG would have started to fall. This makes sense knowing what the neurologist said: pregnancy hormones change the way the methadone is metabolized by the liver. So, now that there are no pregnancy hormones, my body is back to metabolizing it normally and I have too much of it in my bloodstream.
I called the doc around 8 am and left a message asking if we could bring the dose down and how he would like me to go about doing it.
I fall asleep spontaneously while I am sitting at the computer!
This is very weird.. It could be that you are taking too much methadone now, because of the hormone change, but it should not be causing suddenly massive issues like the way you describe falling asleep in the car. Not even most of the temperature issues or panic attacks..
If you weren't metabolising all of your Methadone before, it would definitely make some kind of impact now that you are off the hormones, especially if the dose was in the recreational range, but not totally excessive. You'd be "on the nod" a lot, and feel tired but not tired, able to doze off at random, and you might also experience some mild euphoria or some kind of small buzz in that state.. Have you experienced anything like that? I'm thinking no, because if these issues are related to reduction in your dose, it sounds like your body is dependent and craving the missing milligrams of medication. The sleep thing though, is weird.. I know people have had trouble with Methadone making them sleepy, like Aiken, but I'm not sure why it would suddenly change SO drastically.
Maybe I'm wrong.. someone should point Josh to this thread to see if he can share anything on that.
Likewise I don't know how or why, cutting your dose by 2.5mgs could make you THAT miserable physically. Its almost like you are going through benzo withdrawal or something, which is weird.
The worst withdrawal period I had from Methadone was not getting my dose, and then less than a full day out, I was in quite a bit of pain, maybe had some minor temp. issues, but still quite well enough to drive to the pharmacy with my stupidly modified script to get an early refill.
Methadone withdrawal can definitely be a lot worse, and extremely painful if you are tapered too fast.. But in less than 10 hours, from only missing 2.5mgs? I dunno.. was this a whole dose you cut out? That could explain things for sure.
If you weren't metabolising all of your Methadone before, it would definitely make some kind of impact now that you are off the hormones, especially if the dose was in the recreational range, but not totally excessive. You'd be "on the nod" a lot, and feel tired but not tired, able to doze off at random, and you might also experience some mild euphoria or some kind of small buzz in that state.. Have you experienced anything like that? I'm thinking no, because if these issues are related to reduction in your dose, it sounds like your body is dependent and craving the missing milligrams of medication. The sleep thing though, is weird.. I know people have had trouble with Methadone making them sleepy, like Aiken, but I'm not sure why it would suddenly change SO drastically.
Maybe I'm wrong.. someone should point Josh to this thread to see if he can share anything on that.
Likewise I don't know how or why, cutting your dose by 2.5mgs could make you THAT miserable physically. Its almost like you are going through benzo withdrawal or something, which is weird.
The worst withdrawal period I had from Methadone was not getting my dose, and then less than a full day out, I was in quite a bit of pain, maybe had some minor temp. issues, but still quite well enough to drive to the pharmacy with my stupidly modified script to get an early refill.
Methadone withdrawal can definitely be a lot worse, and extremely painful if you are tapered too fast.. But in less than 10 hours, from only missing 2.5mgs? I dunno.. was this a whole dose you cut out? That could explain things for sure.
Who is Josh? I have not encountered him yet.
I had taken 5 mg at 5pm. Then at 8pm I was due to take 7.5 mg but only took 5. Then at 10 pm I took the milk of magnesia. I have taken milk of magnesia and methadone on this schedule many times in the past month and never had a problem. The pharmacist said that two hours separation time would be enough time to ensure that the MOM did not block any other meds.
It is possible that some of the intensity of the symptoms etc was due to the MOM laxative taking effect. I had got off my regimen that maintains regularity and combats the constipation associated with methadone, and could have been a little bit clogged (TMI, sorry).
If it was not the methadone I don't know what would be causing these symptoms. I saw the fertility doc on Friday for bloodwork and ultrasound and he said I looked pale. I told him about the nausea and dizziness and he said that it shouldn't have anything to do with coming off the hormones (which they stop cold turkey, BTW). But of course, as with RLS docs, the fertility docs, especially if they have not experienced the condition/meds they are treating, often are oblivious to phenomena that patients commonly report. On the Infertility message boards, many women reported that they experienced nausea and headaches when they had an early miscarriage. One woman reported having migraines for 2 weeks.
The thing that makes me think it is the methadone is the inverse relationship of the symptoms to the amount of pregnancy hormones in my body. The fewer the hormones, the worse the symptoms.
My dosing schedule is this:
5 am 7.5 mg
9 am 5 mg
5 pm 7.5 mg (sometimes I switch the 5pm and 8pm dose)
8 pm 5 mg
I may try again tonight to drop off 2.5 mg and see what happens. It seems to me that it shouldn't cause such a big problem and maybe it was just gastrointestinal (I hope - I don't want to experience that again.) I don't want to start out cutting the morning dose because that is when my symptoms are the worst.
Thanks for all your feedback. I hope I hear from the Neuro today.
I had taken 5 mg at 5pm. Then at 8pm I was due to take 7.5 mg but only took 5. Then at 10 pm I took the milk of magnesia. I have taken milk of magnesia and methadone on this schedule many times in the past month and never had a problem. The pharmacist said that two hours separation time would be enough time to ensure that the MOM did not block any other meds.
It is possible that some of the intensity of the symptoms etc was due to the MOM laxative taking effect. I had got off my regimen that maintains regularity and combats the constipation associated with methadone, and could have been a little bit clogged (TMI, sorry).
If it was not the methadone I don't know what would be causing these symptoms. I saw the fertility doc on Friday for bloodwork and ultrasound and he said I looked pale. I told him about the nausea and dizziness and he said that it shouldn't have anything to do with coming off the hormones (which they stop cold turkey, BTW). But of course, as with RLS docs, the fertility docs, especially if they have not experienced the condition/meds they are treating, often are oblivious to phenomena that patients commonly report. On the Infertility message boards, many women reported that they experienced nausea and headaches when they had an early miscarriage. One woman reported having migraines for 2 weeks.
The thing that makes me think it is the methadone is the inverse relationship of the symptoms to the amount of pregnancy hormones in my body. The fewer the hormones, the worse the symptoms.
My dosing schedule is this:
5 am 7.5 mg
9 am 5 mg
5 pm 7.5 mg (sometimes I switch the 5pm and 8pm dose)
8 pm 5 mg
I may try again tonight to drop off 2.5 mg and see what happens. It seems to me that it shouldn't cause such a big problem and maybe it was just gastrointestinal (I hope - I don't want to experience that again.) I don't want to start out cutting the morning dose because that is when my symptoms are the worst.
Thanks for all your feedback. I hope I hear from the Neuro today.
I hope this gets sorted out for you.. As far as I know, if Methadone was gonna kill you or harm you in some way, it would do it very fast. You've also been on it for a while, so at the least I don't think it is necesarrily causing anything life threatening..
The whole looking pale thing, and the experiences of other women you read about, maybe it really is the hormones?
Time will tell I guess.
Josh (Fidgetboy) is a long time forum member, pretty sure hes been here longer than me, but he is also a Pharmacist, so he often has information about side effects and other issues that most of us don't know about, or don't have access to.
I sent him a PM, so hopefully he can give you some ideas or information
The whole looking pale thing, and the experiences of other women you read about, maybe it really is the hormones?
Time will tell I guess.
Josh (Fidgetboy) is a long time forum member, pretty sure hes been here longer than me, but he is also a Pharmacist, so he often has information about side effects and other issues that most of us don't know about, or don't have access to.
I sent him a PM, so hopefully he can give you some ideas or information
-
woodsie357
- Posts: 147
- Joined: Wed Feb 04, 2009 7:54 am
Helen I'm so very sorry you are having such a time with your RLS and medications.
I recently stopped taking my methadone 10mg to 0 mg. I must not have become to dependent on it because I noticed zero side effects. I stopped taking it because it increased my pain *BOGGLE*, and was to stimulating. I don't think the pain was related to RLS either. I felt like my hands were being cut in half and not in a gentle way. I also had a lot of collar bone pain.
I keep having the problem if a medication takes away my RLS, it keeps me awake.
I've kept a really good sleep log over the last few weeks to take with me to see Dr. Earley next Tuesday. In the last 4 days I've slept 3 hours, and that's with taking ambien each night. =(* So I'm not going to bother with that anymore either.
I'll keep you in my prayers Helen. I think we can all feel the pain you are going through. Hang in there.
I recently stopped taking my methadone 10mg to 0 mg. I must not have become to dependent on it because I noticed zero side effects. I stopped taking it because it increased my pain *BOGGLE*, and was to stimulating. I don't think the pain was related to RLS either. I felt like my hands were being cut in half and not in a gentle way. I also had a lot of collar bone pain.
I keep having the problem if a medication takes away my RLS, it keeps me awake.
I've kept a really good sleep log over the last few weeks to take with me to see Dr. Earley next Tuesday. In the last 4 days I've slept 3 hours, and that's with taking ambien each night. =(* So I'm not going to bother with that anymore either.
I'll keep you in my prayers Helen. I think we can all feel the pain you are going through. Hang in there.
Someone cares about your sleepless nights
Thank you so much. I have a feeling that the next few weeks are going to suck, going thru yet another withdrawal, but I have no choice. Since last night I am constantly feeling like I just stepped off a carnival ride.
How do you shave 1 mg off a 5 mg pill that has a break in it for 2.5 mg?break? Do you just guess?
What if, in 5 weeks, my doc recommends starting another IVF? And then my RLS symptoms are exacerbated by the hormones, and I have to jack up the methadone dose again, and then the IVF fails, and then I have to go thru methadone withdrawal again?
Or, what if, the IVF works, but my RLS symptoms are bad so he raises the methadone dose, but I can't handle the side effects, but they won't let me lower the dose because I'm pregnant, and then I am trapped again, but not by the RLS but by the RLS meds!
I know that it's never good to make decisions when you feel like crap but I'm starting to wonder if messing with all these hormones and meds and the RLS together - maybe it's too much of a gamble and too much risk of suffering. Before, I never wanted to consider the possibility that the methadone's effects would change over time. I just told myself to think positive that as long a I could get enough to cover my symptoms I'd survive pregnancy comfortably. Maybe that is too big an assumption to rely on.
How do you shave 1 mg off a 5 mg pill that has a break in it for 2.5 mg?break? Do you just guess?
What if, in 5 weeks, my doc recommends starting another IVF? And then my RLS symptoms are exacerbated by the hormones, and I have to jack up the methadone dose again, and then the IVF fails, and then I have to go thru methadone withdrawal again?
Or, what if, the IVF works, but my RLS symptoms are bad so he raises the methadone dose, but I can't handle the side effects, but they won't let me lower the dose because I'm pregnant, and then I am trapped again, but not by the RLS but by the RLS meds!
I know that it's never good to make decisions when you feel like crap but I'm starting to wonder if messing with all these hormones and meds and the RLS together - maybe it's too much of a gamble and too much risk of suffering. Before, I never wanted to consider the possibility that the methadone's effects would change over time. I just told myself to think positive that as long a I could get enough to cover my symptoms I'd survive pregnancy comfortably. Maybe that is too big an assumption to rely on.
-
woodsie357
- Posts: 147
- Joined: Wed Feb 04, 2009 7:54 am
I don't see him again until May 5 or may 12. I can't remember (I better find out!) He is fairly available by phone. I can usually get a call back within 1, 2, or 3 days. It is really difficult because usually no one answers the phone - you just get a voice mail, leave a message, and hope that someone will get back to you. He is a great doc, this is the main weakness - that I can't be sure to get hold of him when I am in dire straits. And no one at his office seems to take patients seriously when they are suffering. It is weird to me because my GP and my Psych are very responsive to patient's needs - I guess I am spoiled.
What is the best way to taper when you have the 5 mg pills that break into 2.5 mg pieces? I guess 2.5 mg is too big an increment by which to decrease the dose. Do I just guess at how would be 1 mg to cut off?
If I remember correctly, decreasing the morning dose first is the preferred way to go. Is that right? You alternate morning and evening each week? I think that is how I did the benzodiazepines.
What is the best way to taper when you have the 5 mg pills that break into 2.5 mg pieces? I guess 2.5 mg is too big an increment by which to decrease the dose. Do I just guess at how would be 1 mg to cut off?
If I remember correctly, decreasing the morning dose first is the preferred way to go. Is that right? You alternate morning and evening each week? I think that is how I did the benzodiazepines.
Titrating guidelines for medications can be VERY different, even within the same class of medications.
When I used to break up my Methadone in the beginning, to make it last by taking a little less, if I was running low, what I would do is snap it in half at the score. Then take a sharp hobby knife (razor blade did not work too well for me or I was too scared of hurting myself or something) which usually has a pretty small point, and thin blade. Then do my best to cut it in half, lengthwise might work better but I guess its trial and error..
I honestly don't think dropping 2.5mgs like that should have caused such a severe reaction, and also the only thing you changed significantly is that you stopped the IVF.. If it is the Methadone, I suppose it cause be a rare case and you are unlucky to have those kinds of affect, but I think all the evidences tends to point equally to one or the other to be fair.
Woodsies, sorry about your pain problems. You are extremely lucky that you went from 10 to 0mg with no problems. For most addicts titrating off Methadone, even when they are tapered down to 1mg and then to 0mg from 1mg, it is still very difficult to stop and symptoms can still be severe..
I guess I just wouldn't assume that as long as you are receiving the majority of your previous dose, just taking a little away would cause so much trouble - but I could totally be wrong...
It sounds like the IVF has caused multiple problems you didn't anticipate, and for better or for worse, you now have to deal with them... Requip and Mirapex have the same issues when stopping them in that your RLS gets worse for a couple weeks, as your body adjusts to the lack of medication..
What if the IVF is having a similar effect? I mean you did have a bunch of hormones regularly going into your body and may have become accustomed to it in some way, so maybe your body is just reacting to their absence, like with any other medication the body learns to rely on?
Hormone and vitamin deficiencies can cause all kinds of serious symptoms in people all the time, and if withdrawing from the IVF hormones is in any waiting creating a pseudo deficiency your body may just have to readjust, because it wants those hormones and doesn't know what to do with what it has on hand, as it thinks its not enough, etc..
I could be totally wrong about this, I just don't know.. You really are in uncharted water.
But you need to make a decision I guess... Your quality of life - or repeated IVF attempts and increases in Methadone? Either the culprit is your body readjusting as you reduce either the Methadone or stop the IVF hormones once again... You have to face this reality.
Also.. They can tell you how much Methadone your are allowed to take, to help take care of your symptoms (increases when necesarry, etc) but they can NEVER force you to take MORE if you want to reduce your medication.. You just have to realize that if you are complaining about unmanageable symptoms until you hit a certain dose, it's really your decision that allowed you to get there.. They can only recommend you don't reduce your meds, if they know dropping them is going to mean you will eventually call up the Dr. complaining about symptoms.. When you already have the meds on hand and know the sufficient dose you need to alleviate them..
Understand what I am saying? It is a very difficult decision.. I never was sure about the whole IVF thing, and I am so sorry it is causing you problems.. Nobody should have to choose between quality of life and having a child, if they really want one.
When I used to break up my Methadone in the beginning, to make it last by taking a little less, if I was running low, what I would do is snap it in half at the score. Then take a sharp hobby knife (razor blade did not work too well for me or I was too scared of hurting myself or something) which usually has a pretty small point, and thin blade. Then do my best to cut it in half, lengthwise might work better but I guess its trial and error..
I honestly don't think dropping 2.5mgs like that should have caused such a severe reaction, and also the only thing you changed significantly is that you stopped the IVF.. If it is the Methadone, I suppose it cause be a rare case and you are unlucky to have those kinds of affect, but I think all the evidences tends to point equally to one or the other to be fair.
Woodsies, sorry about your pain problems. You are extremely lucky that you went from 10 to 0mg with no problems. For most addicts titrating off Methadone, even when they are tapered down to 1mg and then to 0mg from 1mg, it is still very difficult to stop and symptoms can still be severe..
I guess I just wouldn't assume that as long as you are receiving the majority of your previous dose, just taking a little away would cause so much trouble - but I could totally be wrong...
It sounds like the IVF has caused multiple problems you didn't anticipate, and for better or for worse, you now have to deal with them... Requip and Mirapex have the same issues when stopping them in that your RLS gets worse for a couple weeks, as your body adjusts to the lack of medication..
What if the IVF is having a similar effect? I mean you did have a bunch of hormones regularly going into your body and may have become accustomed to it in some way, so maybe your body is just reacting to their absence, like with any other medication the body learns to rely on?
Hormone and vitamin deficiencies can cause all kinds of serious symptoms in people all the time, and if withdrawing from the IVF hormones is in any waiting creating a pseudo deficiency your body may just have to readjust, because it wants those hormones and doesn't know what to do with what it has on hand, as it thinks its not enough, etc..
I could be totally wrong about this, I just don't know.. You really are in uncharted water.
But you need to make a decision I guess... Your quality of life - or repeated IVF attempts and increases in Methadone? Either the culprit is your body readjusting as you reduce either the Methadone or stop the IVF hormones once again... You have to face this reality.
Also.. They can tell you how much Methadone your are allowed to take, to help take care of your symptoms (increases when necesarry, etc) but they can NEVER force you to take MORE if you want to reduce your medication.. You just have to realize that if you are complaining about unmanageable symptoms until you hit a certain dose, it's really your decision that allowed you to get there.. They can only recommend you don't reduce your meds, if they know dropping them is going to mean you will eventually call up the Dr. complaining about symptoms.. When you already have the meds on hand and know the sufficient dose you need to alleviate them..
Understand what I am saying? It is a very difficult decision.. I never was sure about the whole IVF thing, and I am so sorry it is causing you problems.. Nobody should have to choose between quality of life and having a child, if they really want one.
-
ViewsAskew
- Moderator
- Posts: 16576
- Joined: Thu Oct 28, 2004 6:37 am
- Location: Los Angeles
Yikes, Helen. I am so sorry this is so difficult. I have no answers....just warm thoughts.
Ann
Ann
Ann - Take what you need, leave the rest
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.
Managing Your RLS
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.