Hey guys,
Sorry for not posting in a while. Been quite busy. Right now, however, I'm in a weird state and thought I would see if anyone else has experienced this. I've been getting around 4-5 hours a sleep a night for the past week or so but I'm not sure that is what is causing this.
I feel like i'm subdued. Almost like I'm on too much of a drug but that can't be right as I haven't changed anything lately. In fact, I missed a dose yesterday (I've taken another since then) and I haven't brought anything new into the fold.
My vision is a bit skewed. Everything looks like as if I'm on a ship in the water. Every few seconds, things will sway one way slightly, then the other. Also, I'm having problems concentrating on anything at all. It's strange, but I feel like I'm on some mild hallucinogen. Anyone have these types of symptoms?
Methadone Users
I think that a big part of my attack on Monday night was due to gastrointestinal problems, and maybe the milk of magnesia.
Yes, I regret that I did not ask the neuro what would happen with the methadone if the IVF did not work. He did say that the upper limit on the methadone dose would not likely be determined by him cutting me off - he said that the upper limit would be determined by the amount of side effects I was able to tolerate.
I was doing great on 15 mg/day before the IVF hormones. Do you think that my body will eventually do well on 15-20 mg again? Or is it likely that when I reduce the meds, I will have symptoms and it won't be enough to cover them?
My legs have been bothering me quite a bit today, even before I cut my 9 am dose by half. I just went from 5 mg to 2.5 mg. We'll see how I do today.
I felt awful when I got to work - anxiety, nausea, dizziness, and sleepyness. My friend was so worried about me she insisted on calling the Neuro herself and telling them it was important - and that they need to call me! I took 0.125 Klonopin, I also took 4 mg of zofran (anti nausea) and 50 mg of provigil to keep awake. Provigil also seems to help the dizziness.
The zofran was given to me during the IVF cylce for nausea due to anesthesia and the hormone shot they give you to make you ovulate. The provigil was given to me back in Feb by the psychiatrist. I asked the pharmacist if there was any risk of interaction among the zofran and provigil and she said no. I am not happy taking all these meds without supervision - it makes me feel like I'm going to end up in rehab!
I feel tolerable with these meds to prop me up, but I only have enough to get me thru another week. I wonder if the heuro would give me some scripts to hel pwith the withdrawal period or if he believes in toughing it out.
I made an appointment with a local neurologist who is listed on the RLS foundation doctor list. I figure it can't hurt to meet him and see what his treatment philosophy is and how patient-centered the practice is. I admire the docs at Hopkins and appreciate their expertise and everything they have done for me, but it is difficult to feel like they could take a week or more to call you back when you are really suffering. It would be nice to feel like there was someone local that would be willing to see me when things aren't going as planned.
THe last time I felt really desperate, I ended up seeing my psychiatrist because I couldn't get hold of the neuro. I thought it would have been wonderful if the psych had contacted the neuro for me and said, look, this is serious, can we talk about this patient? But I guess their egos are all too fragile for that. If I don't hear from the neuro I may end up calling my GP, who will probably tell me that she can't help me - I have to call the neuro.
I'm going to an acupuncture appointment today - the reason I was referred was for fertility and stress reduction, but I'm going to ask if they can help me with these side effects and the RLS too. There are so many things wrong with me that I'll have pins all over me - look like the crazy creature in that horror movie!
Yes, I regret that I did not ask the neuro what would happen with the methadone if the IVF did not work. He did say that the upper limit on the methadone dose would not likely be determined by him cutting me off - he said that the upper limit would be determined by the amount of side effects I was able to tolerate.
I was doing great on 15 mg/day before the IVF hormones. Do you think that my body will eventually do well on 15-20 mg again? Or is it likely that when I reduce the meds, I will have symptoms and it won't be enough to cover them?
My legs have been bothering me quite a bit today, even before I cut my 9 am dose by half. I just went from 5 mg to 2.5 mg. We'll see how I do today.
I felt awful when I got to work - anxiety, nausea, dizziness, and sleepyness. My friend was so worried about me she insisted on calling the Neuro herself and telling them it was important - and that they need to call me! I took 0.125 Klonopin, I also took 4 mg of zofran (anti nausea) and 50 mg of provigil to keep awake. Provigil also seems to help the dizziness.
The zofran was given to me during the IVF cylce for nausea due to anesthesia and the hormone shot they give you to make you ovulate. The provigil was given to me back in Feb by the psychiatrist. I asked the pharmacist if there was any risk of interaction among the zofran and provigil and she said no. I am not happy taking all these meds without supervision - it makes me feel like I'm going to end up in rehab!
I feel tolerable with these meds to prop me up, but I only have enough to get me thru another week. I wonder if the heuro would give me some scripts to hel pwith the withdrawal period or if he believes in toughing it out.
I made an appointment with a local neurologist who is listed on the RLS foundation doctor list. I figure it can't hurt to meet him and see what his treatment philosophy is and how patient-centered the practice is. I admire the docs at Hopkins and appreciate their expertise and everything they have done for me, but it is difficult to feel like they could take a week or more to call you back when you are really suffering. It would be nice to feel like there was someone local that would be willing to see me when things aren't going as planned.
THe last time I felt really desperate, I ended up seeing my psychiatrist because I couldn't get hold of the neuro. I thought it would have been wonderful if the psych had contacted the neuro for me and said, look, this is serious, can we talk about this patient? But I guess their egos are all too fragile for that. If I don't hear from the neuro I may end up calling my GP, who will probably tell me that she can't help me - I have to call the neuro.
I'm going to an acupuncture appointment today - the reason I was referred was for fertility and stress reduction, but I'm going to ask if they can help me with these side effects and the RLS too. There are so many things wrong with me that I'll have pins all over me - look like the crazy creature in that horror movie!
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woodsie357
- Posts: 147
- Joined: Wed Feb 04, 2009 7:54 am
Spiticus - I agree with Woodsie - that doesn't sound too good I'd call the doc too. I have been having very unpleasant side effects - as I said I feel constantly like I just stepped off a carnival ride. Can't get the neuro to call me back for anything thoug. Good luck to you and tell us how it goes
!
!
Umm... anti-nausea?
If I'm not mistaken these medications are VERY bad for our RLS, and I don't know maybe there are OK ones, but I could have sworn people have firmly denied things like anti-nausea because of bad RLS experiences after taking them in the past.
I don't think it would be causing your general symptoms, but if it is indeed unfriendly to RLS it probably isn't helping.. Maybe even why you had to escalate your Methadone so high, or at least contributed to it.. Someone who knows more should probably say something or correct me if I'm wrong..
As for tolerating previous dose levels? Sure, it is very possible.. I used to be all over the freaking map, even with Methadone.. 15mg one day, 25mg the next, up to 30 or 40mg and then back down to 15mg.. Granted they were short periods of time, so I didn't get used to a chronic high dose.. However, I was initially afraid I would not be able to tolerate 15mg a day when I gave up control of my supply.
But I'm doing it so far, with only the one increase I got for 20 extra doses.
These issues with RLS irritants sometimes bug me enough, I've considered buying a medical bracelet or dogtags.. If I'm ever unconcious I will be screwed if its from a severe injury and they start loading me up with morphine or other strong opiates before I'm concioius.. and I don't want to wake up incapacitated, and unable to do anything and be stuck with severe RLS because they gave me a medication that made it worse, either.
If I'm not mistaken these medications are VERY bad for our RLS, and I don't know maybe there are OK ones, but I could have sworn people have firmly denied things like anti-nausea because of bad RLS experiences after taking them in the past.
I don't think it would be causing your general symptoms, but if it is indeed unfriendly to RLS it probably isn't helping.. Maybe even why you had to escalate your Methadone so high, or at least contributed to it.. Someone who knows more should probably say something or correct me if I'm wrong..
As for tolerating previous dose levels? Sure, it is very possible.. I used to be all over the freaking map, even with Methadone.. 15mg one day, 25mg the next, up to 30 or 40mg and then back down to 15mg.. Granted they were short periods of time, so I didn't get used to a chronic high dose.. However, I was initially afraid I would not be able to tolerate 15mg a day when I gave up control of my supply.
But I'm doing it so far, with only the one increase I got for 20 extra doses.
These issues with RLS irritants sometimes bug me enough, I've considered buying a medical bracelet or dogtags.. If I'm ever unconcious I will be screwed if its from a severe injury and they start loading me up with morphine or other strong opiates before I'm concioius.. and I don't want to wake up incapacitated, and unable to do anything and be stuck with severe RLS because they gave me a medication that made it worse, either.
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SquirmingSusan
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Zach, Zofran is an RLS-friendly antinauseant.
Helen, I hope you get this all figured out soon. I, personally, can't imagine that it's methadone withdrawal causing all the problems, but then maybe you're extremely sensitive to its effects. (I know that some days I totally forget to take any, and I don't have any adverse effects other than the RLS coming back. But I know that I'm odd as far as not having withdrawal symptoms from anything.)
OTOH, intestinal issues can make me feel terrible. Today, my bowels kicked in, and I had vagus nerve issues, and couldn't stand up without blacking out. My dh passes out totally when he has that problem. Then I was nauseated for a couple hours. I couldn't eat and ended up having a wicked hypoglycemia attack. I thought I was going to have to have my daughter call an ambulance for me, but I managed to suck down a glass of milk, which made me feel better. My point is that there are so many things that can make us feel out of sorts. It takes time to figure out what is medication related, what is hormone related, and what is just something we ate or didn't eat, or a virus, or just a bad day.
Try to relax and not worry too much about what you're going to do regarding the IVF. Give yourself time to recover from what you've been through these last few weeks. ((((Helen))))
Helen, I hope you get this all figured out soon. I, personally, can't imagine that it's methadone withdrawal causing all the problems, but then maybe you're extremely sensitive to its effects. (I know that some days I totally forget to take any, and I don't have any adverse effects other than the RLS coming back. But I know that I'm odd as far as not having withdrawal symptoms from anything.)
OTOH, intestinal issues can make me feel terrible. Today, my bowels kicked in, and I had vagus nerve issues, and couldn't stand up without blacking out. My dh passes out totally when he has that problem. Then I was nauseated for a couple hours. I couldn't eat and ended up having a wicked hypoglycemia attack. I thought I was going to have to have my daughter call an ambulance for me, but I managed to suck down a glass of milk, which made me feel better. My point is that there are so many things that can make us feel out of sorts. It takes time to figure out what is medication related, what is hormone related, and what is just something we ate or didn't eat, or a virus, or just a bad day.
Try to relax and not worry too much about what you're going to do regarding the IVF. Give yourself time to recover from what you've been through these last few weeks. ((((Helen))))
Susan
had that happen Zach, and it sucked!!!!!!!!!!!
i was in the hospital last month & given a dose of benedryl in my iv
while i WAS knapping, holy S*!T pure hell,and yes they knew i have rls.
they added a dose of hydromorphone, 20min later another only then did i START to get some relief, i still have half a mind to call an attorney. maybe a suit would get the word out that rls is serious and more of the medical community needs to learn how to CARE for us..............
i was in the hospital last month & given a dose of benedryl in my iv
while i WAS knapping, holy S*!T pure hell,and yes they knew i have rls.
they added a dose of hydromorphone, 20min later another only then did i START to get some relief, i still have half a mind to call an attorney. maybe a suit would get the word out that rls is serious and more of the medical community needs to learn how to CARE for us..............
Is it nap time yet ?
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ViewsAskew
- Moderator
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A bracelet is a good idea.
I keep a card with me at all times, but who's going to read it?
I also make sure I tell everyone involved in any procedure I have about what I can't take....but who's to say a new person won't somehow get involved?
I keep a card with me at all times, but who's going to read it?
I also make sure I tell everyone involved in any procedure I have about what I can't take....but who's to say a new person won't somehow get involved?
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.
Thanks for the feedback Ann and Zach.
So far, I haven't found that zofran aggravates my legs. REGLAN does! Reglan is terrible for the RLS.
The provigil does have a tendency to aggravate them.
I'm actually more concerned that the symptoms I am having are side effects from methadone, not from withdrawal, since they started way before I tried to cut back on the methadone. In the wee hours of Tuesday morning I had that horrible attack of anxiety and stomach cramps and dizziness after I had cut back by 2.5 mg. But I'm now convinced that was not withdrawal - probably still side effects. My concerns about withdrawal are more in anticipation of what is to come.
I cut 2.5 mg from my morning dose yesterday and did fine aside from aggravated legs. I'm going to continue with the reduced dose today and see how I do. I still have not heard from the neurologist.
This morning I woke up at 3 am with anxiety again. I managed to control it with breathing exercises but when I woke up at 5am it was back. That is the worst one. I can deal with nausea and even dizziness. The anxiety is the worst. It is really strange because my panic is usually associated with a specific worry that I have. This anxiety seems very physical and not associated with any specific fear or worry.
I feel mostly fine now except for my left leg is totally wired up. Maybe I will go for a walk in the rain.
I am glad that warm weather is coming so walks will be more pleasant and frequent.
So far, I haven't found that zofran aggravates my legs. REGLAN does! Reglan is terrible for the RLS.
The provigil does have a tendency to aggravate them.
I'm actually more concerned that the symptoms I am having are side effects from methadone, not from withdrawal, since they started way before I tried to cut back on the methadone. In the wee hours of Tuesday morning I had that horrible attack of anxiety and stomach cramps and dizziness after I had cut back by 2.5 mg. But I'm now convinced that was not withdrawal - probably still side effects. My concerns about withdrawal are more in anticipation of what is to come.
I cut 2.5 mg from my morning dose yesterday and did fine aside from aggravated legs. I'm going to continue with the reduced dose today and see how I do. I still have not heard from the neurologist.
This morning I woke up at 3 am with anxiety again. I managed to control it with breathing exercises but when I woke up at 5am it was back. That is the worst one. I can deal with nausea and even dizziness. The anxiety is the worst. It is really strange because my panic is usually associated with a specific worry that I have. This anxiety seems very physical and not associated with any specific fear or worry.
I feel mostly fine now except for my left leg is totally wired up. Maybe I will go for a walk in the rain.
I am glad that warm weather is coming so walks will be more pleasant and frequent.
Johnny, that totally sucks.. I would flip out on them if that happen to me.
Helen, while I personally have never heard of opiates causing anxiety attacks, etc (quite the contrary, their anti-anxiety effect was part of the reasons I ended up abusing them) I suppose it may be a rare side effect..
I hope you get things sorted out soon.. Maybe you are just so stressed out about things it is creating a panic disorder or something? Or maybe its possible you are having some kind of night terrors or sleep disorder along those lines..
I went through a period a few years ago, where sometimes I would wake up and have the overwhelming presence something was in the room with me and I needed to leave it ASAP.. Sometimes it would be proceeded by temporary paralysis and then I would jump up and get to the nearest lit room with someone in it, or to the nearest light switch.. Once I feel alseep on the couch and later bolted out of the living room, went upstairs and practically burst into my brothers room, out of breath.
I think the first few incidents were the worse, back when I was 18 or 19. I woke up one night and looked at my computer monitor, and there was a friggin skull and crossbones on it, I couldn't move, and it physically felt like I was being compressed against my bed by something, to the point where even my vision began to distort.. Then another time, I woke up and there was a shrouded figure reaching out to grab me, and I was like "oh crap Alien abduction" and screamed at it to get away and bolted across the hall to my parents room..
Really bizzare stuff.
Helen, while I personally have never heard of opiates causing anxiety attacks, etc (quite the contrary, their anti-anxiety effect was part of the reasons I ended up abusing them) I suppose it may be a rare side effect..
I hope you get things sorted out soon.. Maybe you are just so stressed out about things it is creating a panic disorder or something? Or maybe its possible you are having some kind of night terrors or sleep disorder along those lines..
I went through a period a few years ago, where sometimes I would wake up and have the overwhelming presence something was in the room with me and I needed to leave it ASAP.. Sometimes it would be proceeded by temporary paralysis and then I would jump up and get to the nearest lit room with someone in it, or to the nearest light switch.. Once I feel alseep on the couch and later bolted out of the living room, went upstairs and practically burst into my brothers room, out of breath.
I think the first few incidents were the worse, back when I was 18 or 19. I woke up one night and looked at my computer monitor, and there was a friggin skull and crossbones on it, I couldn't move, and it physically felt like I was being compressed against my bed by something, to the point where even my vision began to distort.. Then another time, I woke up and there was a shrouded figure reaching out to grab me, and I was like "oh crap Alien abduction" and screamed at it to get away and bolted across the hall to my parents room..
Really bizzare stuff.
Last edited by Neco on Fri Apr 03, 2009 12:50 pm, edited 1 time in total.
That is a fear of mine, too, that I will accidentally be given benedryl or something that is complete torture. Actually, I am afraid of beig in the hospital at all, because they take away your meds when you are there and will only let you have meds that they dispense and that have been ordered at their hospital. So, I've worried that I would have trouble getting my methadone if I was hospitalized. When I had my baby, they would not let me take my lorazepam for 3 days. Fortunatley they gave me percocet at night time. I was in agony and tears by the time I was discharged.
i went to the er awhile back for a stomach virus gone bad(could not even have a sip of water without throwing up) anyway, i told the dr about my refractory rls and that i take high doses on oxycontin to combat it, she asked me if i could tolerate morphine (yes) so they
administered that into my iv to take care of the rls and ward off withdrawl
syndrome while i was there. i would like to think all hospitals were like that. i hope it was'nt just luck that provided me with such a caring staff.
administered that into my iv to take care of the rls and ward off withdrawl
syndrome while i was there. i would like to think all hospitals were like that. i hope it was'nt just luck that provided me with such a caring staff.
Is it nap time yet ?
Hi Helen-- wow, long thread! Sorry you're going through so much hell right now. I'm trying to get the gist of exactly what's going on with you, so forgive me if I'm confused. Here are my thoughts:
1) The heat issues you are mentioning can be caused by quite a few things: your recent hormones, reboxetine (see number 2) or your methadone. As an aside-- narcotics tend to cause the temperature issue to show up when you miss a dose/or are late taking it. Usually, it's withdrawal sign. Some people actually get the chills and feel like they can't warm up.
2) You didn't mention how long you have been on reboxetine, but that drug has a ton of "anticholinergic" side effects which include: dry mouth, constipation, headache, drowsiness, dizziness, vertigo, low blood pressure, excessive sweating, insomnia and paraesthesias.
3) Fertility drugs cause absolute chaos for most patients. You may want to talk to your ob/gyn to find out how much longer these meds may be in your system. From what my patients have told me-- getting anxious, having temperature issues, etc are very, very common with hormones.
Typically, when we are unsure which drug is causing the problem-- we choose one and take it away and see if you get better. You should chat with your doctors and find out which drug you can attempt to get rid of. My bet is that it is the cocktail of hormones, reboxetine and the methadone that is causing you problems.
1) The heat issues you are mentioning can be caused by quite a few things: your recent hormones, reboxetine (see number 2) or your methadone. As an aside-- narcotics tend to cause the temperature issue to show up when you miss a dose/or are late taking it. Usually, it's withdrawal sign. Some people actually get the chills and feel like they can't warm up.
2) You didn't mention how long you have been on reboxetine, but that drug has a ton of "anticholinergic" side effects which include: dry mouth, constipation, headache, drowsiness, dizziness, vertigo, low blood pressure, excessive sweating, insomnia and paraesthesias.
3) Fertility drugs cause absolute chaos for most patients. You may want to talk to your ob/gyn to find out how much longer these meds may be in your system. From what my patients have told me-- getting anxious, having temperature issues, etc are very, very common with hormones.
Typically, when we are unsure which drug is causing the problem-- we choose one and take it away and see if you get better. You should chat with your doctors and find out which drug you can attempt to get rid of. My bet is that it is the cocktail of hormones, reboxetine and the methadone that is causing you problems.
Josh
Fidgetboy -
Thanks for your feedback and for taking the time to look at my problem. I am not taking reboxitine, however . .. there are a couple of conversations going on in this thread and you may have confused me with someone else's post. I regularly take Nexium and Methadone.
I was really convinced that what I was feeling was a result of taking too much methadone (I haven't missed any doses). The doc said that the hormones would change the way teh methadone was metabolized, making it not work as well. SO, when I stopped the hormones, it felt like my dose had been increased very quickly. So I began to think I shojld lower the methadone dose and dreaded withdrawal symptoms.
All hormones were stopped on 3/23. The nausea started on 3/21 and got progressively worse over the next 8 days. I have never felt too cold, usually too hot. But the hot flashes are becoming less of a problem as this week is going by.The middle of the night panic started on 3/30 and continues. The first night was horrible but now I am controlling it ok. When I wake up in the morning I feel jittery, scared, and nauseous. I have recovered a little bit more quickly as each day this week has passed. Today I didn't have too much trouble staying awake and the panic and nausea dissipated by 9 am. Yesterday and today I backed the morning methadone dose from 12.5 to 10 mg. (evening dose is 12.5) I don't know how many days it will take for me to feel the full effect of that decrease. I don't know if my feeling better today than yesterday is a result of the decrease.
My legs are definitely worse this entire week than they have been since about 3/7. A shame, because they were great on 25 mgs for 3 weeks. I hope they are still tolerable when I bring the dose down to 20 mg/day or hopefully, 15 mg/day.
RLS is evil and is made more evil by the evil of infertility!!
Thanks again, and sorry for the long posts. I feel like I have monopolized this thread and made it my personal journal. I'm really grateful that you folks are out there and I hope that my experiences will be able to help someone else in the future, or the at I will be able to help ohters as you all have helped me.
Thanks for your feedback and for taking the time to look at my problem. I am not taking reboxitine, however . .. there are a couple of conversations going on in this thread and you may have confused me with someone else's post. I regularly take Nexium and Methadone.
I was really convinced that what I was feeling was a result of taking too much methadone (I haven't missed any doses). The doc said that the hormones would change the way teh methadone was metabolized, making it not work as well. SO, when I stopped the hormones, it felt like my dose had been increased very quickly. So I began to think I shojld lower the methadone dose and dreaded withdrawal symptoms.
All hormones were stopped on 3/23. The nausea started on 3/21 and got progressively worse over the next 8 days. I have never felt too cold, usually too hot. But the hot flashes are becoming less of a problem as this week is going by.The middle of the night panic started on 3/30 and continues. The first night was horrible but now I am controlling it ok. When I wake up in the morning I feel jittery, scared, and nauseous. I have recovered a little bit more quickly as each day this week has passed. Today I didn't have too much trouble staying awake and the panic and nausea dissipated by 9 am. Yesterday and today I backed the morning methadone dose from 12.5 to 10 mg. (evening dose is 12.5) I don't know how many days it will take for me to feel the full effect of that decrease. I don't know if my feeling better today than yesterday is a result of the decrease.
My legs are definitely worse this entire week than they have been since about 3/7. A shame, because they were great on 25 mgs for 3 weeks. I hope they are still tolerable when I bring the dose down to 20 mg/day or hopefully, 15 mg/day.
RLS is evil and is made more evil by the evil of infertility!!
Thanks again, and sorry for the long posts. I feel like I have monopolized this thread and made it my personal journal. I'm really grateful that you folks are out there and I hope that my experiences will be able to help someone else in the future, or the at I will be able to help ohters as you all have helped me.