166 replies to this topic

[fishinghat]

It should help. yes. I just hate to see any more misery in her life but you have to do what you have to do.

[greyeyed123]

So far, so good. No outbursts yesterday, and she slept through the entire night without talking. She also had no major memory problems or confusion through the afternoon or evening yesterday.  She did seem to have some withdrawal symptoms that mostly cleared up by late afternoon, but they were no where near as bad as the withdrawals from the duloxetine (or from the lorazepam for that matter).  I'm hoping I made the right decision.

[greyeyed123]

Things have been a little rough, but not too bad.  She's been more wobbly on her feet, and Friday she fell in the bathroom (not bathing) and bumped her right side on the side of the bathtub (I guess; that's what she said when I came running and she was next to the tub, but she can get confused). She didn't have any marks or bruises at all, even a couple days later. I was afraid she might have cracked a rib, but she didn't want to go to the hospital. I'm not sure there is anything they could do anyway. We're going to see the family doctor today just in case.

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She's needed help in and out of bed the last few days, but this morning she was doing better in that respect. She did say she might vomit, and that seems to be one of the withdrawal symptoms on nortrip. She has not had vomiting as a symptom for anything in a very long time, so I'm thinking that is what it is.

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Yesterday she seemed to have some withdrawal agitation for most of the afternoon and evening, but no outbursts or crying since reducing the nortrip. She's been eating a lot more, and has noticeably gained weight over the last 2-3 weeks. I'm thinking some of her right side pain is her constipation again as she has almost always had right side pain with constipation.

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I'm nervous about reducing the nortrip from 50 to 25 on Friday or Saturday, but I think we'll give in a try and see how far we get. I'll talk to the family doctor about it today if we can get an appointment.

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I called the pain clinic Friday but the doctor and his nurse weren't there, but the scheduler said they had canceled her appointment for the spinal stimulator but hadn't yet rescheduled. They are supposed to call me today, and since we are in the middle of all these other health factors, I'm going to ask them to schedule it for in a month or two. Hopefully she'll be stable by then.

[greyeyed123]

Thanks to everyone's input here. I won't say we're out of the woods yet (and jinx our progress), but mom's already doing much better. We got to the 120 duloxetine/25 nortriptyline step Friday night (for nortrip) and Saturday morning (for duloxetine).  She clearly had withdrawals almost all day yesterday (Saturday), but there were nowhere near as bad as the side effects or other withdrawals she has had.  She seemed to even snap out of those around 7pm.  Pretty much everything has improved: no more major confusion in the afternoon/evening, no more major memory problems, no more talking all night, no more angry outbursts, her constipation has improved, her walking has improved, the headache on top of her head is gone, she's getting in and out of bed on her own. Her pain is always a little worse at first after each step of the cross taper, but that stabilizes fairly quickly too.

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The pain clinic is also working with us--allowing us to call to schedule the new spinal stimulator when she has stabilized fully.

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Our next neurologist appointment is on Sept. 22, and if she continues to improve I'm going to ask him to give us a few months to continue reducing the lorazepam as much as we can and not add any new medications.  From May to the end of July, she improved to a point where she was better than she had been in the previous 2-3 years. I'm hoping we will soon be back to that so we can just stay there for a while.

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Thanks again.

[greyeyed123]

We're hitting a few bumps in the road and need a little reassurance. Since mom fell on August 5 she's had some extra pain problems, so I didn't want to drop the last 25mg of nortriptyline all at once. So I've been using the water taper and have gotten to .75 of the 25, which is 18.75mg.  She's walking better, can get in and out of bed on her own, her memory has improved, constipation is improved, barely using her walker now, etc, (still a little confusion and a bit more memory problems than when we started the nortriptyline) but now she's having some outbursts again of crying, and a little anger, but not as bad as it was before when reducing the duloxetine and increasing the nortrip (enough to get me rattled a bit, though--these episodes are lasting 1-2 hours, sometimes once a day and sometimes twice, but not everyday). I started the taper by reducing the 25mg by 1/6 for two days, then by 1.25/6 for two days, then I slowed to 1.5/6 (or .75) for the last 4-5 days.  Maybe I'm going too fast?  Also, I haven't changed her lorazepam at all (still at 2.25 a day). My intention is to still get her off the nortriptyline first before reducing the lorazepam.  This feels like it's going to take forever.  Is there any way to tell if something is a side effect or a withdrawal symptom?

[fishinghat]

I am afraid there us no way to tell. If done correctly this will be a very long process. It can take months to years to come off some medicines. It can be done faster but there will be more suffering. I think you are absolutely taking the right coarse. Time and patience.

[greyeyed123]

She had no outbursts today (so far), but she did want to go to the family doctor. He thinks it is withdrawals also.  If I reduce her dose by 1 drop per day (from where we are now), it will take 80+ days to reduce to zero.  I did reduce by two drops last night from the previous night (which would put me at 40+ days to zero).  I'm going to try the two drops a day for a while and see how far we get.

[Ferodrigues]

Hi everyone! I´m so glad to find this website... I was desperate and this surely gave me some hope!

 

I´m new here and as I'm not a native speaker, you may notice some flaws on my messages... I hope you understand.

I´m living in the USA for a year as part of my PhD, then I´ll came back to my country. I have fibro and having been taking this poison for 2 years and a half. The initial dosage was wrong , according to the last doctor I talked too. He said his colleague should have introduced it as 30mg then increase it soon to 60mg.

 

So, I came here with the dosage of 60mg, since february. I decided to stop taking it for several reasons: I stay away from the bathroom (for number 2...) at least every 4 days... My blood pressure has increased a lot and the doctors couldn´t find a cause for that, as I´m 32, so they think it´s because of the drug; and the last but not the least, I wanna have a baby, it´s time for that... i´m 32.

 

Though I´m a nurse (which are the worst patients, I must admit), I reduced the dosage for 30mg and i´m now living all the nightmare that you´ve described through the posts: dizziness, nausea and vomiting; blurred vision; fatigue; vivid nightmares; I´ve been crying for days without any major reason...

 

To sum up, I wanna know how long I must reduce the beads... as far as I understood, i must open the capsule, remove 3 beads... then 6 beads... but do you mean a daily basis reducing? 

 

I hope someone helps me soon, can´t wait to start the beading count... I wanna highlight the fact that I can´t afford a physician here and my insurance is only for emergencies. Besides,  I don´t wanna use prozac... I´ve done that for years too...unless it is extremely necessary!

 

Anyway, hope hearing from you very soon!
 

Thanks for having me!!!

 

Ferodrigues.

[fishinghat]

Welcome F.

 

Your English is better than a lot of my friends. lol

 

What you need to do is get back on the 60, stabilize, then start the bead counting. You need to open a capsule and find the number of beads inside, usually around 300 but it varies from 7 to 600 depending on the brand. The object id to reduce ab out 1% per day. Now I will be honest. For some that is too fast and for others it can be faster but that is a good starting point.

 

No strangers here, just family. Don't be afraid to ask questions.

[greyeyed123]

No more outbursts since August 29, but she is having some vomiting now (dry heaves, I think, this morning), and is clearly having withdrawal symptoms each day (usually starts around noon, and continues through most of the day, sometimes improving a little here and there--one evening they seemed to clear up entirely for the whole evening, and I don't know why).  She hasn't had vomiting as a symptom of anything in a very long time, so I'm sure this is withdrawals from the nortrip.  We are at 63% of the 25mg now, which is almost 16mg.  I had been reducing by two drops a day, but changed that to one drop last night.  We have 61 drops to get to zero.  This isn't easy, but I do think it is getting better. My plan is to continue reducing by one drop for a while and see how it goes.  Right now it feels like the bumps in the road are getting smaller, and there have been enough days with no outbursts of anger and/or crying that I think we've passed that point.  At least I hope so.

[fishinghat]

It really tests your patience doesn't it. You really want it over so your loved one won't suffer anymore but it just takes time.You are doing great just hang in there.

[greyeyed123]

I decided to pause the taper for a few days and see if she stabilizes. She had more vomiting today when I was at work, a couple of mini-outbursts (5-10 minutes), and episodes where her pain seems worse. Also, dad has PTSD from Vietnam and he isn't handling this very well, especially when I'm not here. We have a caregiver that comes 4 hours a day, but she isn't the greatest either (dad doesn't trust anyone else, so I'm kinda stuck; we had some caregivers from a professional service, but he argued with them until they quit or he fired them; now we just have this family acquaintance).  My hope is she will stabilize enough to perhaps reduce by one drop every 3 days or so (maybe 2 days if I can get away with it). That would extend our timeline from about 60 days to 180 days (or 120), but at this point I feel like the withdrawals are worse than the side effects were. She still has a bit more confusion than before she went on the nortrip, and her memory is still worse than when she started, but her distress seems the greater of the two evils (and I'm not entirely sure the confusion and memory problems aren't due to withdrawals). She's complaining of stomach problems every morning, which are basically the same complaints she had the day after we reduced from 75mg to 50mg, and from 50mg to 25mg, which makes me suspect it as a withdrawal symptom. I feel like I don't know what to do other than slow down the taper.

[fishinghat]

It is a balancing act. I think you are taking the right approach. From your posts it seems like she does better a few days after a drop.

 

God bless and remain strong.

[greyeyed123]

This morning was the first morning in at least two weeks where she didn't complain about her stomach, and took her morning pills on time at 7:00AM. Wow. I'm hoping the rest of her day goes as well.

[greyeyed123]

Well, I guess the rest of the day wasn't so good. I'm going to continue to pause the taper at the same level as the last two days for a few more days and see how things go.  If she improves I may just leave her at that level until our neurologist appointment on Sept 22.  I'm not sure what else to do.

[fishinghat]

Your doing the best you can GE123. Sometimes it feels like darn if you do and darn if you don't. Time and patience.

[greyeyed123]

I think I'm making the mistake of thinking she's having either side effects or withdrawal symptoms, when it is probably both. She did eat a little bit more yesterday, and had no vomiting yesterday. But she saw the news story about the man who confessed to killing that boy in '89 and started crying pretty hard (I'm an only child and only son, and the kid was around my age at the time, so I think that was the trigger). I just comforted her and tried to get her to think about something else, and she seemed to calm down in 10 minutes or so. She was definitely agitated when I got home. Dad was making a conscious effort to do better, but it's still very difficult for him.  (The caregiver is coming in a couple hours early for a while.) I think her withdrawal symptoms are nausea, restlessness, dizziness, and confusion; and her side effects are a bad taste in her mouth, dry mouth, talking during her sleep, anxiety, memory problems, and also confusion.

[fishinghat]

Sounds like withdrawal alright. With your help she will get there. It might help to keep a log of things, like when you raise or lower a drug and how she does during the day. With time you might be able to see a pattern to this chaos.

[greyeyed123]

Yesterday was better. Dad said she was 75% better than the day before. The restlessness was much better, no crying or outbursts. But she did have about 30 minutes of confusion in the evening--she would start to tell me something, and then it was almost like when she's talking in her sleep (it would make sense at first, and then it would make no sense but she would just keep the story going). But even that cleared up by bed time. My plan is to leave her at this level for a couple more days and see how she does. If it's about the same or better, I may drop the dose again (about 2%) and see how that goes for a few days.

[fishinghat]

Greyeyed, you are a wealth of information. Your situation is similar to ours but unique in the effects of the other medication. It yields so much to us who try to help others with their problems Keep us informed and keep up the good work.

[greyeyed123]

Thanks for helping me make sense of this. Withdrawals were better yesterday also--no outbursts, no crying, a bit of restlessness but not like 3 days ago. I think it's becoming clear to me that nausea, dizziness, and confusion are both side effects AND withdrawal symptoms for her. When we aren't reducing the dose, the nausea is there every morning, but no vomiting during the day and she's eating a bit more (although not a lot). When we reduced too fast, she had vomiting, more dizziness, and more confusion. Right now I think I will leave things where they are for 2-3 more days and see if things stay about the same. If so, I don't see we have anything to lose to continue the taper--but I'll slow to 1 drop (a little less than 2%) every 3-4 days and see.

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I also feel much more comfortable with the water taper idea now, so I think I'll use it for the lorazepam once we get off the nortrip.

[fishinghat]

I can help you set up that water taper when you get to that point. It really works.

[greyeyed123]

She did better each day for the last week or so. I dropped about 1.6% from our present level on Monday night, and Tuesday morning she had nausea again. Lots of restlessness last night. So I left things alone last night, and she was complaining of nausea this morning also. So I think it is clear now what is withdrawals and what is side effects. I'll just go slow. Our neurologist appointment is next Thursday.

[greyeyed123]

Mom made an appointment with her family doctor today for a separate issue that turned out ok. Anyway, he didn't seem to think such a small drop (1.6%) would cause any problems. I talked to the pharmacist today also and she said the same (she actually said 25% drops are normal).  I don't know what to make of this. When she was having trouble about 10 days ago, I stopped the taper. She gradually improved every day until she was not complaining of nausea in the morning anymore, and taking her pills on time every day. I dropped her 1.6% on Monday, and Tuesday morning she's complaining of nausea again, and couldn't take her pills on time, and clearly had some kind of distress throughout the day (looked very similar to her lorazepam withdrawal). Same with today (although I didn't drop any more last night).  Today she had some vomiting also. (And again, she hasn't had vomiting as a symptom of anything in many many months, if not several years, until we started dropping the nortriptyline. She didn't even have vomiting with the lorazepam withdrawal, nor the lyrica withdrawal.)

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I'm feeling frustrated that you go to these experts and they act like they have no idea what you are talking about and what your telling them can't possibly be so.

[Pittbullmomma]

Agreed! They most certainly do not care about withdrawal, weaning. New symptom-new med. That's what I got when I saw my doc on Monday. :-(

[greyeyed123]

I think things are going fairly well. The neurologist cancelled our Sept. 22 appointment because he went out of town (it's been rescheduled for the day before Thanksgiving).  We're down to around 13-14mg of nortrip.  I reduced her about 5% starting a week ago Thursday (Sept. 22) over 4 days.  Friday I reduced her 2% more. She's complaining of more pain, and is having some difficulty, but it is much more muted than it was previously. She also seems to have a bit more confusion and memory problems after a drop, but over time those seem to improve. I'm scared of going too fast for fear her pain will spike, she'll want to go to the ER, and all they will want to do is tell her to take more lorazepam.

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Speaking of lorazepam, I've bought some of the supplies for a water taper (not going to start it for a while, but was thinking I may be able to do both at the same time once we get the nortrip low enough, and if I only reduce, say, 1% a week or so on the lorazepam--at least at first). Can you reuse the disposable syringes for measuring doses? Is a mixer necessary, or can I mix it by hand (with the mortar and pestle first)?  Also, will a water dose keep over night to the next day? I always make up her meds at night since mornings are so hectic. Will the medicine settle in the water and stick to the bottom of the cup (causing her not to get the whole dose)?  I'm also a bit concerned she might spill them (or the caretaker during the day might spill them). I believe I have all the supplies except a mixer.

[fishinghat]

Lorazepam dissolves poorly in water so a significant amount of water needs to be used. Here is how I make mine...
 
I grind up enough tablets to make a 3 day supply. Lets say 9 grams (3 grams/day). Once powdered I then rinse out the mortar and pestle with water into shaker for making drinks. I then bring the volume up to 600 ml. Shake well and you are ready. You can take a benzo every 8 hours but for withdrawal it is recommended every 6 hours so you don't have as many swings up and down. With this 600 mls you can take a 50 ml dose every 6 hours (200 ml/day) for three days. Do NOT store a benzo solution over 7 days as it will loose its potentcy. The little vials I use have caps on them and a mark at 50 ml. These are frequently used by chemists, veterinarians, etc and I believe they are sold on Amazon. Look up 50 ml vials.
 
By the way the normal is 5% a month so that would be too fast for her given her age and her nortrip withdrawal. I would suggest about 0.25% drop per week for one month. If all is OK then 0.5% a week. I wouldn't try more than that. Lorazepam withdrawal can be a bear and going back up in dosage is a no-no as it actually makes the withdrawal worse in most people. Once she is off the nortrip then you can look at dropping faster on the lorazepam. Lorazepam is thee third most addictive Benzo and to take a year or two to come off is common.

 

If you have any other questions let me know.
 
If you have any

[greyeyed123]

We're down around 12mg of the nortrip now. I called in a refill for her lorazepam, and the doctor only refilled it for 60 (2 per day), with instructions to take one half twice daily! (She's been taking 2.25 a day, and whenever I reduced only 1/8 of a pill before, she'd cry all day afterward. I can't imagine dropping it 1/4 of a pill, or as the instructions say, down 1.25 so she'd be taking 1 a day.)  I'm just dismayed. My sense is this is just his way of telling us to reduce it, and if we can't he would refill them anyway...but it feels passive aggressive and it's got my anxiety up. I wanted to wait until we got closer to zero on the nortrip. Now I'm not sure what to do. For right now I'm leaving things the same and call the doctor tomorrow.  (We went to the pain clinic yesterday for a regular appointment, and that doctor didn't think 12mg of nortrip was very much. I'm still dropping it 2% a week, and she's still having vomiting right afterward...and they still seem to think that the two aren't related.  The only other possibility I can fathom is that the vomiting is a side effect that just gets worse when we reduce even a tiny bit. Otherwise it seems plainly to be a withdrawal symptom to me.)

[fishinghat]

To my surprise there is no medical articles reflecting vomiting as a withdrawal symptom but there sure us a lot of antidotal evidence.

[greyeyed123]

http://mentalhealthd...ptoms-duration/

 

I found this that mentions vomiting both in the "nausea" section and as a separate withdrawal symptom. There are a couple mentions of it in the comments also.