88 replies to this topic

[tfaff]

Hi, I am so glad to finally find people who get whats going on with me. After telling many doctors that I feel horrible and I live like an 80 yr. old, (I am 53), and getting no help, I learn that Cymbalta, that Ive been taking for over 9 years, is pretty much writing my medical records. I started with very shallow breathing, and then stopping breathing when I sleep, bringing on sleep apnea, and using a CPAP. 

This also led to anxiety, (from not enough oxygen) so adding another medication. Ive developed headaches, more meds for that, and I even had brain zaps in the beginning that I described to my husband, but it sounded odd saying I had a lightning strike in my brain. 

 

I was a marathon runner before starting Cymbalta, now many days, I can hardly empty the dishwasher.  And finally my psychciatrist decided to start tapering the Cymbalta. She is a new doc, as we just moved to Kansas.  This was the first time I looked up side effects for Cymbalta, I am embarrassed to say. I should have known better, and saved myself nine years of struggle.

 

She reduced my 60mg to 30 mg a month ago and that went well, except for a suicidal episode that popped up out of nowhere.  Ive never had any experience like that. So last week I agreed to drop it to 20 mg, I am excited to get this stuff gone...but now after three days at 20 mg., I am so achy, like a severe flu I hurt bad, everywhere.  It started the evening after I took my first 20 mg.

 

I have read a lot on this site, so would I be right to go back to the 30 mg. and stay there to balance out, then start counting beads? My doc doesn't think my withdrawal will necessarily be a problem, but she is willing to let me go at a pace I am comfortable with. I have to say I am so hopeful to maybe have a real life back. Appreciate any advice you all have to give! 

[gail]

Hello Tfaff,

Yes, do reinstate at 30mg for a while then bead count. This will bring you relief almost instantly.

What a ride you had, and what an awful drug. Some do well on it, I have heard!

Others will chime in, off to work.

[fishinghat]

Gail is right. Many drs do not understand the seriousness of Cymbalta withdrawal. One reason is that not everyone has the most serious symptoms. Take your time and be kind to yourself. You have already covered much ground and you will make it.

[citrusbliss]

Hi,  I'm pretty new to weaning off C too so I'm only sharing my withdrawal woes, not trying to give advice.

 

I was on 60 mg duloxetine (generic Cymbalta in Canada) for 5 years. In January I saw my doctor and we cut the dose by half and I started with 30 mg. After a week or so I tried bead counting down to 22 mg (took a couple of weeks) and that's when I got very sick. Nausea, achey, headache, dizzy...just hellish!

 

I went too fast with the weaning process. I went back to the Dr yesterday and now I'm back on the 30 mg dose until I feel better (stabilized). Today I feel like crap again. I guess my body/brain has to get used to being back at the 30 mg.

 

It's not easy dealing with this awful drug but I keep hearing the same good advice: go slow, time and patience are what it takes for a successful wean off Cymbalta, everyone is different and goes at their own pace and always, always take good care of your very vulnerable self during the process. Hang in there 

 

 

 

 

[tfaff]

Thank you for your kind advice. I took the the 30 mg. yesterday and the achey muscles are somewhat better. I am just in a heavy brain fog here. Its like a severe flu. So Ill continue with the 30 mg and wait to stabilize. Ive been living such a reclusive life for several years already, I just hope this is the ticket to feeling normal again.

[citrusbliss]

Good for you! I feel the same flu like symptoms and I'm waiting to feel better, stabilize as well. I agree, I feel that sluggishness too back on 30 mg but I know it's the safe way to go.

I so empathize with you...I've been very reclusive as well. Partly due to physical limitations but also because of anxiety and depression. I'm really looking forward to feeling like myself again. One day at a time 

[citrusbliss]

Back on 30 mg duloxetine and feeling better but I want to eat everything in sight!! That pumpkin pie I made is gone...what a roller-coaster.

[tfaff]

I've been back on 30 mg. for a few days, doing pretty well.

But on the 20 mg. the worst part was severe flu symptoms, but also short term memory loss, sinus stuffiness so I can't use my CPAP.

Thankfully I don't have an appetite, and I've lost a few pounds since starting the withdrawal - 75 more to go! I am all in for making this happen, to feel like me again.

So tomorrow I plan to start taking out two beads, then four, etc. I feel I need to go slow because I've had so many bad side effects for over nine years, and because I am 54, BUT I so want to get this done.

[fishinghat]

You will make this tfaff. Slow but steady.

[tfaff]

Hi, I am so glad to finally find people who get whats going on with me. After telling many doctors that I feel horrible and I live like an 80 yr. old, (I am 53), and getting no help, I learn that Cymbalta, that Ive been taking for over 9 years, is pretty much writing my medical records. I started with very shallow breathing, and then stopping breathing when I sleep, bringing on sleep apnea, and using a CPAP. 

This also led to anxiety, (from not enough oxygen) so adding another medication. Ive developed headaches, more meds for that, and I even had brain zaps in the beginning that I described to my husband, but it sounded odd saying I had a lightning strike in my brain. 

 

I was a marathon runner before starting Cymbalta, now many days, I can hardly empty the dishwasher.  And finally my psychciatrist decided to start tapering the Cymbalta. She is a new doc, as we just moved to Kansas.  This was the first time I looked up side effects for Cymbalta, I am embarrassed to say. I should have known better, and saved myself nine years of struggle.

 

She reduced my 60mg to 30 mg a month ago and that went well, except for a suicidal episode that popped up out of nowhere.  Ive never had any experience like that. So last week I agreed to drop it to 20 mg, I am excited to get this stuff gone...but now after three days at 20 mg., I am so achy, like a severe flu I hurt bad, everywhere.  It started the evening after I took my first 20 mg.

 

I have read a lot on this site, so would I be right to go back to the 30 mg. and stay there to balance out, then start counting beads? My doc doesn't think my withdrawal will necessarily be a problem, but she is willing to let me go at a pace I am comfortable with. I have to say I am so hopeful to maybe have a real life back. Appreciate any advice you all have to give! 

[citrusbliss]

Hi tfaff!

 

I have 50 pounds to lose (all gained while on AD's) and it's true my appetite decreased when I tried to taper down the first time and increased when I went back up to my original 30mg dose duloxfetine. I noticed sinus stuffiness too. This time around I'm trying the baby taper...5 beads out (that's 1% taper) for 5 days steady. Then if I feel okay I'm going to try 8 beads out for 5 days steady and so on. I seem to be too sensitive when I get down to 25 mg so I'm going sloooow. If there are 150 beads on average in one capsule 30mg duloxetine then it's going to take some time...all good 

 

P.S. 

I'm 56 and going strong!

[tfaff]

Thank you, Fishinghat, its been such a long road already I will dig in and get this done.   

 

I have a question: If I am slowly tapering should I still expect to have symptoms every day?  I thought I was feeling much better so I went out of the house today, and realized I still feel like I kind of have the flu, its totally doable, and I want to continue to taper. But just want to know what level of wellness I should expect to feel on an ongoing basis. Like, should I keep tapering unless Im having symptoms that I cant handle. 

[tfaff]

Citrusbliss, it is so good to hear another person going through this at the same time.  How do feel at your best as you taper? 

[fishinghat]

If you feel slight ups and downs from day to day that is OK. If you develop a withdrawal symptom that steadily increases, even slowly, over a couple/three day period that is an indication you need to slow down/pause and then start up again a little slower. Having said that, remember, that some days have more stress and excitement in them and that effects these symptoms and must be taken into account. A tough balancing act for sure. I would leave you with this. If you are in doubt then go ahead and pause your weaning. It may take you a little longer by why suffer too much. Once you feel strong withdrawal then it is too late. Even if you pause at that time you will probably continue to get worse for a few days and have to deal with it for a longer period of time before you can start weaning again.

[KathyInFL]

Hi citrusbliss and tfaff, I'm tapering too. I have the cymbalta that has 12 little pills in my capsule, I'm down to 10 of the 12. I was feeling okay, I was on 11/12 for a month and on the 10/12 since Feb 1. Today I'm staving and shaky, it might not have anything to do with this taper. I have knee pain back again, I know that's from the taper.

 

I gained about 60 pounds in the last 10 years, I hate it!! And I'm older than both of you!

 

If I can ask you both, are you on the brand name cymbalta? I need to get onto a brand that has the hundreds of little beads for my next refill prescription. 

 

Thanks!

[tfaff]

Fishinghat your info is golden, I have been to so many doctors looking for any amount of help. I really appreciate all of you here, and having some company along this road. Thankfully right now, my life is less stressful than it ever has. I don't have to work, and I havent for a couple of years, so I can take every day as it comes and deal with it. Reading so many other posts, I know I have to go very slowly for sure and not mess around with that part of it.  My mind is so cloudy, its hard to know how to ask the questions, so I hope youll bear with me, but I see others have asked similar ones and Im learning from everyone else's experiences too.

 

Citrusbliss and Kathy, Im cheering for you! Every day brings us closer. I want to hear about your good days and the challenging ones. We got this.

[citrusbliss]

Citrusbliss, it is so good to hear another person going through this at the same time.  How do feel at your best as you taper? 

Hi tfaff, at my best I feel woozy, flu-like and usually a strong headache going on. Sometimes nausea but now stomach acid so I take an antacid and that seems to keep it under control. I just accept that I'm rearranging my brain chemistry and that is tough going so I don't push myself too hard. 

 

It's a new 'normal' for sure. One thing that I keep in the forefront of my thoughts is that all of this commotion going on in my head and body is a positive thing...it means my body is compensating for a little less Cymbalta in my system and that is AWESOME 

 

I'm so glad to hear from you!

[citrusbliss]

Hi citrusbliss and tfaff, I'm tapering too. I have the cymbalta that has 12 little pills in my capsule, I'm down to 10 of the 12. I was feeling okay, I was on 11/12 for a month and on the 10/12 since Feb 1. Today I'm staving and shaky, it might not have anything to do with this taper. I have knee pain back again, I know that's from the taper.

 

I gained about 60 pounds in the last 10 years, I hate it!! And I'm older than both of you!

 

If I can ask you both, are you on the brand name cymbalta? I need to get onto a brand that has the hundreds of little beads for my next refill prescription. 

 

Thanks!

 

 

Hi Kathy, I'm taking Duloxetine (Canada) 30mg. It has on average 150 little pellets in each capsule, not uniform in size. Hang in there!

[fishinghat]

If any of you are curious what brand you are taking just look at the label and it will give either manu. name (eg. Mylan, Parker, Pfizer, etc.) or a manufacturers code number. That way if some one wants to switch to what someone else is taking because it has a lot of small beads you can be sure what to ask for at the pharmacy.

[tfaff]

I should add that I have also been taking Wellbutrin XL along with the Cymbalta for over nine years. Then a few years ago we had a big house fire and I started having anxiety, so the same psychiatrist put me on Buspirone three times a day.

Thankfully we moved to another state and I chose to find another psychiatrist to help manage my meds. She is the one who looked at my meds and wondered how it was even healthy to be on all three and suggested me weaning off of Cymbalta.

I had other issues with breathing and my blood sugar, and my stomach, and started having severe headaches, but the doctors didn't see it could be related to one of my meds, so they'd send me to a specialist and I'd end up on another pill for that issue. I am curious to see how many meds (and diagnoses) I can shed here!

[tfaff]

I am on day 5 of tapering from 150 beads, I'm at 140 and I feel pretty good today. Sinus stuff settled down and the brain fog lifted. So I plan to continue removing two beads a day until I start to have symptoms again. Enjoying a good day, and the sun is out.

[citrusbliss]

I'm right behind you tfaff! Day 7 of taper and 8 beads down out of 150. I'll try another 2 beads out tonight and stay at that level for a few days. I'm not risking any severe withdrawal symptoms because the sun is out and the snow is melting!!! I deserve some good days  as do we all.

[KathyInFL]

I'm still on 10 of the 12 small pills. I will stay on my cuts for a month until I get the Cymbalta with the little beads. I have a pdoc appt Feb 22 so I'll ask for the brand name. I hope my insurance is okay with that. 

[citrusbliss]

Major anxiety time...my work insurance company that is paying me long term disability is calling to ask for medical history update...always causes me a ton of anxiety and panic even though I haven't gotten any better since the last update...I screwed up my finances this month and am living on almost nothing until the end of the month...I'm not sleeping and just walking to get groceries and cooking is exhausting.

 

I called my psychologist for an appointment and I need to see my surgeon again for another post spinal fusion check-up - still have leg nerve pain in right leg. I just feel like an emotional mess that is not even due to Duloxetine. Insurance company left me alone after surgery and after my Mom died in November...now they're back to calling me and I feel like mush. I'm also waiting to hear about my application for government disability benefits which insurance pushed me into applying for to offset their payments to me...arrrrgggggggh!!!!!  

 

Just need to rant a bit. No one else gets what this feels like or just isn't interested anymore - "Aren't you better yet?" doesn't really help.

Anyway, thank you to whoever takes the time to read this rant. I know I'm not alone on this site 

[gail]

Hello Citrus,

Nah! You are not the only one going through these anxiety feelings. I understand what you are saying, like just one more shitty thing and off I go off my fourth floor balcony! Which will hurt more than kill me(lol).

But, of course, we don't do it. Just hoping that all will eventually settle down. Keep on hoping Citrus, don't lose hope! And should you lose hope, which would be of human nature, know that it will come back! Lovexx

[fishinghat]

You guys are right. I have never been so busy and frustrated until after I 'retired'. Between insurance, lawyers, drs, shrinks, psychologist, Social Security audits, etc. I don't even have time to breath let alone feel well.

[citrusbliss]

Hi Gail, 

 

You're so right! I know it will get better but man it's hard sometimes to get through the long days.

 

So I had my pity party and then made a meal plan for the rest of the week. Indian vegetable pilau for dinner tonight, yum!

[citrusbliss]

You guys are right. I have never been so busy and frustrated until after I 'retired'. Between insurance, lawyers, drs, shrinks, psychologist, Social Security audits, etc. I don't even have time to breath let alone feel well.

 

It's not the kind of attention that helps is it! I have to say I think anxiety is pulling ahead of depression on the symptom scale for me. Dr's have no idea the hell they can send us into with their prescription pads...maybe that's why their writing is illegible LOL

[gail]

The thing is, I think that they are doing what they think is right and they don't want to harm us intentionally. No one does that except...Let's not go into this!

As my doctor said about Cymbalta, in 2013, it's the best molecule there is. Today, she no longer prescribes it. Whichever med we take, it's trial and error most of the time.

I am in my fourth year of experimenting all kind of drugs for GAD. And when I find something that helps, it's short lived. Two weeks at the most. And I start over again and again. That is asking a lot of energy and guts and thank God that I am a believer...

Bottom line, life is not easy and life is not for sissies even though I do consider myself one. Hope is, when possible, what keeps me going.

[KathyInFL]

Anyway, thank you to whoever takes the time to read this rant. I know I'm not alone on this site 

No you aren't alone, we who have been there and are still there know exactly how you feel! Please rant away! 

 

How are you feeling today?