In dec 2020 I had a few serious health issues and found myself unable to sleep or eat. Doc felt it was anxiety and I started on 20mg duloxetine on Jan 21, 2021, it was increased to 30mg on feb 6. Due to bad side effects it was decreased back to 20mg one week later. It never did make sleep or eating better, in fact made it worse. Doc said to continue for one week and stop. After seeing a few sites saying not to just stop I started weaning off. My 20mg capsule had on average 108 beads inside. I immediately went to 75 beads for 3 days with no issues. Next I went to 50 beads for 3 days with no issues. I then went to a 40 bead dose, then 35 bead dose, then 30 bead dose, then 25 bead dose. Going to the 25 bead dose gave me tinnitus, headache, and some jitteriness the following day. Yesterday went to 24 bead dose and wondering how to proceed. Unsure if I should just stop and hope things don’t get too bad since I was on a low dose for not very long or if I should continue removing beads. Last week the doc started me on a low dose, 7.5 mg of mirtazipine for the persistent insomnia which has been helping a lot. Not sure if the mirtazapine would cover the withdrawal like when people switch over drugs because duloxetine and mirtzapine are different classes of drugs. Doc wasn’t sure, he is my primary care doc and doing his best with these drugs. Any input would be appreciated.
Need Help To Finish This
#2
Posted 11 March 2021 - 08:42 AM
Hi Mimi and welcome,
First of all your doctor should have understood that symptoms often DO get worse in the early days of starting these types of meds. So, after your 24 days on it, a little over 3 weeks, admittedly they should have started to ease off, but they can last well into the first month. If they continued to get worse however, then there is just cause to stop them, but a lot of patients (and doctors) expect these things to work within a week or two. Whilst we are obviously not a fan of Cymbalta here, we have to admit that it does work for some!! But this is information you should be aware of if you try another similar med.
The mirtazapine is a different drug in the way that it works, but it increases the same chemicals as the cymbalta, but the problem you have is not knowing what is a start-up effect of the mirtazapine and what is a withdrawal of the Cymbalta.
When you make a drop with cymbalta, it will take 3 days for the blood levels to even out, so the 4th day will show up any issues, but my question is how quickly did you do the subsequent 5 bead drops? If they were done daily, then I would put a hold of the drop for a few days until you level out and start to feel better. Even 24 days on Cymbalta can have a nasty withdrawal, but you are in a situation where the drug is causing issues and the withdrawal is causing issues, so which way do you turn?
But from experience, I would just let your system settle with what it has going on as it will be very confused at the moment. Then start the drop again and reduce the last few beads over 7-10 days. Be prepared for a potential rough patch, but if the mirtazapine is working then by the time you restart the drop, your chemical levels of serotonin and norepinephrine will be more stable courtesy of the mirtazapine, so hopefully that last drop won't be so bad.
Hope that gives you a bit of information, but please let us have your thoughts and let us know how you go.
IUN
#4
Posted 11 March 2021 - 04:00 PM
Thanks so much for the information and support, it is much appreciated. I posted on a couple other sites as well, one no one responded at all and another one they just admonished me for going too fast and gave me a taper schedule which was going to take me 18 months to get off a drug I had only been on for 6 weeks. That advice given here makes much more sense to me and I will let you know how things go. I really think that the insomnia and stomach issues developed because of all the different antibiotics they were giving me due to the series of different infections I was experiencing. I am a cancer survivor and have a compromised immune system due to disease and chemotherapy. In early dec I had a bout of diverticulitis which landed me in the ER. They put me on 2 different antibiorics to take for that, I no sooner finished those antibiotics when I was diagnosed with C. difficile from the antibiotics, thus having to be put on another antibiotic. All of these antibiotics and a faulty immune system caused a bad case of oral thrush which required a double round of anti fungal medication. During all of this I developed a uti which required another antibiotic. During all of this going on for a month I started with terrible insomnia and loss of appetite, doc thought maybe there was some health anxiety causing it hence the cymbalta. Cymbalta made insomnia worse and appetite worse, lost 25 pounds in 4 weeks. Doc changed to mirtazapine because he felt it would help with sleep and appetite, both have improved but don’t know if it’s the mirtazapine or the cymbalta going away that has helped. Well again I want to thank you both for your support and will keep you posted as I continue getting off the cymbalta.
#5
Posted 11 March 2021 - 05:00 PM
A traumatic story for sure and you have my sympathy as well. Many of our members have went through significant GI issues and/or antibiotic issues during withdrawal and I can not lie to you. Most have a hard time with the withdrawal because it normally causes a lot of bad GI symptoms as well. Lets hope all goes well with you.
By the way, I normally recommend a 0ne year withdrawal for people who have been on it a while but not for those at the 6 week period.
You are not alone. We will support you in any way we can.
#6
Posted 13 March 2021 - 04:03 PM
Something a bit odd seems to be happening and maybe someone can explain it. I am holding at my 24 bead dose for the 4th day. I take the dose about 7am and about 10am the tinnitus, headache, jitteriness and nausea start, this usually continues until about 5pm, then things settle down and remain calm until the following morning about the same time. Is taking the dose of cymbalta causing this or is it withdrawal?
#7
Posted 13 March 2021 - 04:39 PM
We have often had the same questions here. Theoretically after a dose of Cymbalta the withdrawal symptoms should improve and that does happen with some folks but the are others who seem to be the opposite. I do know that the serotonin levels cycle up during the day and don't start fading until about an hour before sunset. Some members have had luck with splitting the dose. For example 12 beads in the morning and 12 in the evening. This helps smooth out those periods of up and down.
This is sort of similar to members who up dose. They do a drop, the symptoms get too bad so they go back up to the previous dose to stabilize. The only issue is that many do not stabilize. They develop symptoms such as your for an extended period of time. Wicked medicine.
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#8
Posted 14 March 2021 - 07:32 AM
I realized this morning somewhere I messed up. I had made a bunch of what I thought were 25 bead capsules when I got to a 25 bead dose so they would be easier to work with in counting beads. When I went to take this morning dose I was going to remove 2 beads to give me a dose of 23 beads or dropping 1 bead for today. I counted and apparently I didn’t make 25 bead capsules, I made 20 bead capsules up to work with. So that means the past 4 days I was holding at a 19 bead dose, not 24 and today I am at a dose of 18. I guess at this point it doesn’t matter and I’ll just continue from here and hopefully when I get to a 15 bead dose and make up 15 bead capsules to work with I will count more carefully.
#9
Posted 14 March 2021 - 08:04 AM
Something a bit odd seems to be happening and maybe someone can explain it. I am holding at my 24 bead dose for the 4th day. I take the dose about 7am and about 10am the tinnitus, headache, jitteriness and nausea start, this usually continues until about 5pm, then things settle down and remain calm until the following morning about the same time. Is taking the dose of cymbalta causing this or is it withdrawal?
Hi Mimi...
Read your story and I too offer my sincere sympathies for what you have been through. As Hat said, rarely is there a case where GI issues do not rear their ugly head during these things, but an 18 month withdrawal for 6 weeks is simply too long. There is cautious, and there is that!
If you are taking your dose at 7am, your blood levels will reach maximum levels approximately 3 hours later, so the fact that you are getting these symptoms at 10am is damning evidence that it is the Cymbalta causing this. Plus, as Cymbalta has a 12 hour half life, by 5pm, you will be reaching 50% level in your system, and this is when effects start to wear off. So, yes this is the Cymbalta causing the issue here.
You are in a viscous circle where you need to come off this stuff but at the same time you do not want to rush it.
Given the issue you found today, this puts the puzzle together further. If you have gone 4 days like this, then yes, just stick with that for now. After 3 days, your system will have settled on this dose, so if you can tolerate this dose, then stick with it.
All the very best - keep us posted!
IUN
#10
Posted 14 March 2021 - 08:09 AM
Thanks for responding to me, much appreciated. Do you think at a dose of 18 beads and the issues I am having should I drop by 1 bead each day or is that too quick? I have also noticed that the past few days I have been having an issue with my nose running a lot and having to blow my nose a lot. I had this happen when I first started duloxetine and doc said common side effect, wait it out and it would go away and it did but now it’s back again.
#11
Posted 14 March 2021 - 08:43 AM
Quite likely that the overproduction of mucus will dissipate in time.
Regarding the bead drop, I would continue with the one per day if you have remained at the present dose for a few days. Maybe take a pause or a day or two if you are feeling bad. Listen to your body. Remember that the drop becomes greater with each bead you remove. So dropping 1 bead from 20 is a 5% drop, but 1 bead from 10, is a 10% drop, until the very last 1 bead to nowt is the 100% drop, which is why it can get a bit tougher at this stage, hence the reason of us telling people to put the brakes on at this stage, but yours is a different story as you have not been on so long, so my advice would be to continue the bead per day and again, listen to your body and take a break of a day or two if you feel the need.
#12
Posted 14 March 2021 - 09:53 AM
Thank you for helping me through this, the support is much appreciated. I just counted some more beads in capsules and made them at 15 beads, counted them twice and put a note on the container they’re in, don’t want to repeat my miscount/mislabeling mistake.
#13
Posted 14 March 2021 - 10:41 AM
Took my dose a little later this morning, a little after 8, and again here it is 3 or so hours later and the headache is starting, jitters are rolling in, nausea too. I think iUN is right on it when saying it is caused by the dose of duloxetine . How miserable this all is, don’t feel like I ever settle or stabilize at any dose because every time I take the dose it starts everything up.
#15
Posted 16 March 2021 - 06:44 AM
Yesterday I went to a dose of 16 beads, this morning I did 15 beads. I made need to hold here for a bit, not sure. The past 2 nights I have had trouble with sleep, which is the worst thing to deal with for me, insomnia is what got me started on duloxetine when back in late december I simply could not fall asleep nor stay asleep, was only sleeping about 2 hours per night, doc felt it was most likely anxiety driven. My brother gave me some 50mg trazodone which he had used previously for sleep issues back when the insomnia started and I used it for a week and was falling asleep easier but still only getting about 2 hours sleep. Sleep continued to be really bad until doc started me on mirtazapine. I had been sleeping ok since my doctor put me on mirtazapine in early march but the past two nights it doesn’t seem to be working as well, trouble falling asleep and waking up multiple times throughout the night and hard to fall back asleep. Getting about 5 hours sleep in broken segments of about one hour each. I am taking 7.5 of mirtazapine, doc said to start on 7.5 mg but could go up to 15 if needed, but I was hoping to manage on the 7.5 dose. Not sure if the sleep issue is withdrawal from duloxetine or if the 7.5 mg is no longer working for me. Any thoughts are always appreciated.
#16
Posted 16 March 2021 - 07:52 AM
Mirtazapine takes around 4 weeks to even kick in so I doubt if it was even helping at this point. If you started in early March it would be early April before you would see an effect. As an antidepressant, mirtazapine has a significant withdrawal as well. I am NOT a doctor but just on the surface it sounds like your dr is a heavy believer in antidepressants. There are so many prescription and non-prescription meds out there that may help with sleep and don't have withdrawal. Things like hydroxyzine, diphenhydramine, melatonin, and others. Just a thought.
I would imagine your sleep issues is from the Cymbalta withdrawal as that is very common.
#17
Posted 16 March 2021 - 08:31 AM
I tried melatonin and it didn’t help me at all, I just laid in bed awake with a terrible case of vertigo from it, tried a 5mg melt and thought maybe that was too strong so got 2mg timed release formula, same results. In fact, after taking melatonin had to get up to use bathroom and was stumbling around which made my husband say no more melatonin as he was afraid I would fall and get hurt. Benadryl has a weird reaction in me, makes me wired and not tired at all. I think doc may have mentioned hydroxine and doxepin but said if I have a wired reaction to Benadryl, it would probably be the same with those two. Doc did give me a script for trazodone but my brother had some which he uses time to time when he can’t fall asleep, but it didn’t really help me other than to fall asleep a little faster but was still only getting 2 hours of sleep. I am only using the mirtazapine for sleep that’s why the lower dose, doc seemed to think it would help immediately for sleep issues. The first week or so I took it I fell asleep within 15 minutes and was able to sleep 6 or 7 straight hours, but the last 2 nights haven’t been so good, hard time falling asleep, hard time staying asleep. Thanks for the suggestions though, any info is always greatly appreciated. Since the chemo a few years ago I have been unable to nap during the day no matter how tired or poorly I sleep at night so insomnia really pushes me to my limits, and when it started the end of December, falling asleep but only for 2 or 3 hours I had to seek help. Since I also have some residual nerve pain from the chemo doc thought duloxetine was a decent choice since he felt the insomnia was anxiety driven though I told him I wasn’t really feeling anxiety, said it could be subconscious anxiety. Duloxetine made the insomnia worse and when we went to 60mg for the short time I was getting no sleep at all even with trazodone, and it did nothing for the nerve pain either. That’s when doc said cut back to 20, stay a week and stop and he would start mirtazapine because that should help sleep at a low dose. I am actually scheduled for a ganglion nerve block tomorrow with a new pain management doc who seems to think it may help with the pudendal pain I’ve had for years now, since chemo, I am hopeful. Thanks again for sharing your knowledge and experience, it is much appreciated.
#18
Posted 16 March 2021 - 09:05 AM
I guess I also should have mentioned that I use an edible gummy form of medical marijuana before bedtime to settle the nerve pain down to a point I can sleep through. It is a combo of THC and CBD. My oncologist suggested it and I have been using it for a few years now. Forgot to ask, will holding at the 15 bead dose help the sleep settle back down?
#19
Posted 16 March 2021 - 04:27 PM
It probably won't help the sleep issue.
Just a couple notes.
It is no wonder that you had that reaction from the melatonin. Research shows that a dose greater than 0.75 mg is actually detrimental to sleep. The optimum dose is around 0.5 mg sublingual. Sublingual is below the tongue. Place placing a few drops (depends on the product) under your tongue and holding it there until it is absorbed (1 or 2 minutes) directly into the blood stream it is more effective. By taking it in the pill form it is mostly digested.
Your dr is right that hydroxyzine is similar to Benadryl but its action is a little different. Benadryl has little benefit to me for sleep but hydroxyzine works well. Hydroxyzine is often prescribed for anxiety and withdrawal symptoms as well. Several people here have found it helpful with their withdrawal. Just a thought.
"Duloxetine made the insomnia worse and when we went to 60mg for the short time I was getting no sleep at all even..."
That is a bad sign that Cymbalta wasn't for you. Now you have to deal with the withdrawal.
#20
Posted 17 March 2021 - 04:02 PM
Hi Mimi,
Insomnia has been the most persistent side effect for me from Cymbalta withdrawal. Ive never had trouble sleeping before or during Cymbalta (Cymbalta actually made me feel tired and sleepy constantly). My insomnia is primarily related to falling asleep though I do have some trouble staying asleep after about 5 hours or so and it's hard to fall back asleep once I wake up. Also I feel unrested nearly every morning regardless of how much sleep I'm getting. I've been taking 25mg of Seroquel for about a year now to help fall asleep each night. It works but the sleep quality is not good like I said. I want to get off of it and relearn how to fall asleep naturally without medication.
I talked to my primary care doctor about it, she said the first line of defense that is most recommended for sleep by experts is actually CBT-I. Cognitive behavioral therapy for Insomnia. It's basically a program that looks at your individual circumstances to address what may be causing your insomnia and how to fix it. Some things you may already know, like sleep hygiene, there are other methods like mental relaxation, breathing etc., or even sleep restriction like only using your bed for sleep, never lying in bed awake for more than 20 minutes. It's all meant to be tailored to your specific needs. It sounds really interesting and I'm currently looking for someone who practices it so I can start. Certainly sounds like a more productive solution than medication of any kind. Sleep meds in particular are not intended to be taken long term. It actually makes me sad to hear that a doctor would prescribe an SNRI like it's nothing just for insomnia...
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#21
Posted 18 March 2021 - 07:22 AM
Thank you for sharing the information with me. Insomnia is so horrible. I never had issues with sleep until my 4th round of chemo a few years ago. I went to a psychiatrist who practiced CBT, as well as a sleep doctor, we did all the sleep hygiene and breathing and I went to a mindfulness relaxation class as well. Nothing helped. They both said they had never seen such hard to treat insomnia, I could not fall asleep on my own, could not stay asleep, and was always awake very early. They tried sleep restriction but after 4 days with absolutely no sleep and the inability to nap during the day they said to stop it immediately. They then turned to trying all sorts of drugs, ambien, ambien cr, lunesta, sonata and nothing gave me more than 2 maybe 3 hours of sleep. I have tried melatonin, calm aid and a few other OTC options and nothing worked. They tried several different medications at that time such as doxepin, trazodone, klonopin, Ativan and remeron. Remeron is the only thing that ever helped some but was uneven from 6 hours one night to none at all the following. At one point they had me on three or four at the same time. It took me almost a year to get off of all the drugs they put me on with klonopin at that time being the hardest to get off of. Finally after I got off everything a few months later sleep got better for me, was never back to what it was prechemo but I could sleep about 6 hours on my own, but unable to nap during the day but I got used to it and had been going on that way for the past five years. Suddenly one night this past December when all my health issues started again I found myself unable to sleep again and it continued only getting about 2 hours sleep a night and doing nothing all day but lying in a recliner because I was so exhausted yet no sleep. Finally went to primary doc and he thought perhaps it was anxiety driven and that’s how I got to this point. And again I have not slept very much since doc put me on remeron 7.5 a couple weeks ago and again it is very uneven, first couple nights on it I slept well but since then very erratic. Last night was a night where I got about 2 hours sleep. Took the remeron about 10 and was still tired but wide awake at 1, at that point I took half a trazodone and finally fell asleep about 2 but woke up at 315 and been up since. Feel absolutely exhausted and know that it’s going to be a long and miserable day until I can try again tonight to get some sleep. I was wondering if the ganglion impar nerve block I had done yesterday morning had anything to do with it. It has been life changing for me again as my husband and I like to have the grandkids, 10 and 7, over and do weekend trips with them and day adventures and everything has been put on hold because of my lack of sleep and not knowing what days it will be bearable and which nights will make the next day unbearable. Sorry Togo on for so long and I hope you have better luck than me in repairing your sleep.
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#22
Posted 18 March 2021 - 08:22 AM
"I was wondering if the ganglion impar nerve block I had done yesterday morning had anything to do with it. "
That is certainly possible but depending on what the used it should wear off in a couple days.
I must say that is certainly a devastating situation. With all you have been through I doubt if I can shine any light on a possible resolution. I will take some time during the next few days to research the medical journals on unusual conditions that can cause severe chronic insomnia. A long shot but worth a try.
#23
Posted 18 March 2021 - 09:08 AM
Hat, thank you so much for all of your help, you are very kind. The nerve block had lidocaine and steroids in it, doc said lidocaine would give some quick but short relief and it would take about a week for the steroids to give any relief. Yesterday pain was only slightly improved after the block but pain is back today same as always. Again thank you so very much for your assistance.
#25
Posted 18 March 2021 - 12:21 PM
This really needs to be approached one stage at a time. For sure there are a number of issues here, but in trying to deal with more than one can have significant effects on the other.
Further to what Hat said about the melatonin, your use of THC will also bring on the early release of melatonin, so by taking a larger dose, coupled with this, will for sure be too much. Many have fallen prey to this issue thinking more is better, but in this situation, it most certainly is not. It can really mess up your circadian rhythm. I have delayed sleep phase disorder, so I know all about just how screwed up it can be!
Your last message is heartbreaking. Especially the part about having to put things on hold for not knowing what the next day will bring. A lot of us here can sympathise with that only too well. It is horrific at best.
Now I only bring this up as a last resort as I have made something of a vow to not mention this too often, but my wife had insomnia issues for some time, perhaps not quite to the concentration as yourself, but her rescue was something that rescued my seizures, which is Kratom. The thoughts of it are a mixed bag as the FDA do not want it getting in the way of tax dollars, yet there are many many highly respected people advocating it. If you are not of an addictive disposition - and I say this only for your own benefit - it might be worth considering given everything else you have tried.
I cannot stand to see people suffer quite the way you are. I am merely putting this out there as an option and will happily answer any questions, but the decision it solely your own.
I, too, would be interested to know if you are taking anything for potential GI symptoms as Hat asked, as it will helps us get a more rounded picture.
IUN
#27
Posted 18 March 2021 - 12:46 PM
OK, here goes mimi. This is what I have found so far. The one item that I really think may be an issue I am still working on,
Low L-tryptophan
#28
Posted 18 March 2021 - 12:46 PM
I have had stomach issues since chemo, every round of chemo was followed by a shot of neulasta and a round of antibiotics due to depletion of my immune system, after the last round I kept complaining to the oncology staff about horrible diarrhea I was dealing with and they just kept attributing it to anxiety and the drugs the psychiatrist had put me on. Finally after 3 months and a 40 pound weight loss I called my GI who had me do a series of stool tests and I had high levels of two toxins of cdifficile which took 3 rounds of vancomycin to clear up, GI doc was on the verge of scheduling me for a fecal transplant when the third round finally worked. Needless to say there was damage done to my intestines due to both the chemo regimen and the cdifficile so since that time I have been taking 2 culturelle probiotics a day on the GI’s advice. He has since retired but my new GI suggested to continue with it. Sorry if that was TMI. So after all of that I do have some IBS-d which flares from time to time. So now I have diarrhea from time to time but that is normal for me.
Since being on all the antibiotics back in December and going on and now trying to taper off duloxetine I have not had an appetite at all, force myself to eat a little bit each day but have lost some weight again and I am a petite person so I really don’t have the weight to lose. My husband is always handing me a small glass of protein shakes, like ensure, to try to prevent me from losing anymore weight. He tries very hard to look out for me and help me through this the best he can but unfortunately he cannot sleep for me or eat for me.
again I am sorry for writing so much but sometimes it helps. It definitely helps to have the kind support and advice I have found here.
#30
Posted 18 March 2021 - 01:38 PM
Looks like we were all typing at the same time, I’m going to research Kratom now.
I would suggest this site Mimi
https://www.americankratom.org/
There is far too much hype, but please feel free to ask any questions. The AKA link to scientific resources - they have nothing to gain in advocating Kratom. They, like many others, would like people to know of the potential benefits. I for one am so grateful that I do not have to rely on Valium to control my seizures.
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