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New Here & Needing Taper Advice!


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#1 Overwhelmed

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Posted 03 August 2019 - 02:03 PM

Hello everyone, my name is Sharon. Just from everything I’ve read here, I’m already thanking God I found ya’ll. I’m not sure how much info you need so I apologize if this gets too long. I was started on 60mg of Cymbalta 7/2017 for nerve pain, I’ve had TN1 (Trigeminal Neuralgia) since 2014. In 9/2018 it rapidly progressed to also include the constant pain of TN2 but still with daily TN1 attacks. So my dr upped my dose to 120mg but decreased back to 90mg 2/2019 due to side effects, mainly bladder problems. In 4/2019, bladder problems became severe again so reduced to 60mg, no change so further reduced to 30mg one month ago on 7/7th. Due to now having Neurogenic Bladder, I have a Foley Catheter in place & was refused refills. Contacted my Neurologist, she overstepped the prescribed (my PCP) & agreed to give me a 3 month supply & highly suggested I find a Support Group to help me safely taper the best I could with what I have. The office she works for has a “No Cymbalta Prescription’s” policy, said she can make no guarantees but would try to get me another 3 mo again, for longer tapering, but her hands may be tied. So right now I only have 111 of 30mg capsules to taper with. I counted beads in 4 capsules: 179, 179, 178 & 181 = 717 divided by 4 = 179.25. This is where I’m stuck, I can’t figure out, given I can only rely on the 111 capsules I already have, what percentage of taper to do in this situation, how often to drop etc. There’s been no other meds introduced since starting Cymbalta so I’m confident that it’s the culprit for all these horrific side-effects, including my bladder. I know all these tapers were too fast but, so far, withdrawal symptoms have been mild. And never once have I felt it helped with the nerve pain. As far as the Antidepressant aspect, it had the opposite effect, caused a dark depression where none existed before. Could someone please, please give me guidance & help me figure this out? I’d be ever so grateful. I’m going through a very high TN flare, I agree with my Neurologist, the stress of all this is a contributing factor. But because of it, I can’t always be “Johnny on the spot” when it comes to being here, but will do my very best. Again, I’m sorry this post is so long, I wanted to give you as much info as I could, while I could. Thank you for understanding & May God be with each of you.

#2 invalidusername

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Posted 03 August 2019 - 03:11 PM

Hi again Sharon - and thanks for the information, that is a lot to go with.

 

I'll cover what I can, but I feel FishingHat will need to weigh in here with some more advice as there are parts here that he knows more of than I.

 

We have had a number of members who have had to deal with depression as a result of being on Cymbalta for nerves - so if nothing else, you are not alone, and I sincerely hope this abates soon for you.

 

So if you have been on 30mg for a month and the withdrawal has been bearable then this is a good sign. The problem is, not knowing whether you will be able to get another 3 month supply causes issues with coming up with a withdrawal plan, so you will need to assume for now that you only have this three month supply - BUT, this may well be ok as three months worth of 30mg goes a lot further for a withdrawal.

 

You need to allow a few "emergency" beads before anything else, and work on a slower taper from 10mg, and again at 5mg and down from there. I need to go off and work a plan out for you... so bear with me and I will come back in a few minutes...


#3 invalidusername

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Posted 03 August 2019 - 03:29 PM

OK, here goes (Hat please check this!)

 

You have 3 months worth of 30mg - each of which have 180 beads - this gives you 16200 beads, which I propose you follow with the plan as below which will take 25 weeks or ~6 months which is about right for the amount of time you have been on the meds and will keep your withdrawal symptoms at lowest risk.

 

Stage 1.....

 

30mg (180 beads) for one more week (1260 beads)

25mg (150 beads - take 30 beads from capsule) for 3 weeks (3150 beads)

20mg (120 beads - take 60 beads from capsule) for 3 weeks (2520 beads)

15mg (90 beads - take 90 beads from capsule) for 4 weeks (2520 beads)

10mg (60 beads - take 120 beads from capsule) for 4 weeks (1680 beads)

 

This leaves you 5070 beads - from here you need to go by beads and not weight;

 

Stage 2....

 

50 beads for 1 week (350 beads)

45 beads for 1 week (315)

40 beads for 1 week (280)

35 beads for 1 week (245)

30 beads for 1 week (210)

25 beads for 1 week (175)

20 beads for 1 week (140)

15 beads for 1 week (105)

10 beads for 1 week (70)

5 beads for 1 week (35)

 

This will leave you the equivalent of 17-18 doses of 30mg for emergency which is plenty. You may find you can go quicker for stage 2, or you might need to go slower - but you will have plenty to do that.

 

Does this make sense?


#4 fishinghat

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Posted 03 August 2019 - 04:42 PM

IUN, you did a good job!!

 

That looks like a good place to start overwhelmed.

 

If you need to know how many beads to remove to get to 25 mg. 20 mg. etc. let us know and we can calculate that as well.

 

As withdrawal symptoms appear let us know if you need any help and please keep us informed as to your progress.


#5 invalidusername

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Posted 03 August 2019 - 05:40 PM

Thank you Hat - feel better for someone to have checked it over. My gray matter isn't at it's finest on a Saturday night :)


#6 Overwhelmed

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Posted 03 August 2019 - 05:40 PM

Oh my gosh, thank you so much, you’ve just given me hope! Bless your heart, “hope” is such a precious gift to give someone. And thank you for talking to me about the depression. Yes, it does help immensely, to know (although it’s so sad) that I’m not the only one this has happened to. I continuously told my dr that I was falling into a very dark place, that my thoughts were scaring me. She said it was “impossible for Cymbalta to be the cause, it’s an Antidepressant”, that it had to be from the life-altering TN or I had an underlying Mental Disorder. I begged her to help me, my words fell on deaf ears.

This sounds like a perfect plan. I was just so overwhelmed, I couldn’t think straight enough to crunch the numbers. I had it in my head that it was going to be impossible to do, with just the amount of beads I have to work with.

I do have one question though, I’m sure I’ve read this somewhere here but I’m drawing a compete blank. I don’t remember how to determine how many of my beads are in 5 mg? So, for a 25mg capsule...I took your count of 3,150 beads (3 week total) divided by 21 (days) equals 150 beads. In other words, I remove 30 beads from each of my 30 mg capsules for those 3 weeks to equal 25mg. And then repeat the same process, except different number of beads, to reach 20mg, 15mg etc. am I understanding that correctly?

Thank you again, so very much!

#7 Overwhelmed

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Posted 03 August 2019 - 06:31 PM

Hat, I just posted a reply to IUN (I’m just learning names, please forgive me if I mess up). I wasn’t sure how to calculate 5mg of beads. So I took, what’s probably the long around to do it, & used the number of total beads for each 3 weeks, to calculate number of beads to reach 25mg, for example, per day. I’m hoping I came up with the right number. Would you also take a look at my post, in case I’m not making sense? I confuse myself these days so I can only imagine how much I must confuse others.

What IUN gave me, sounds like a perfect plan for me, I can do this. One more question, when I post any questions, my progress etc, can I just add to this thread? Or do I start a new one each time?

I simply cannot begin to express my gratitude to both of you, such a wonderful difference y’all have made in my life today. I wish I would never of taken Cymbalta, just as I wish I would of found ya’ll so much sooner. BUT I’m not wasting time being angry or looking back on something I cannot change, what’s done is done. It’s time to pick up what pieces are left of me & start moving forward, now that y’all have made that possible.

Thank you, again!

#8 invalidusername

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Posted 03 August 2019 - 06:56 PM

You are more than welcome Sharon... and your doctor unfortunately does not fully understand these meds. Depression can be caused by too little OR too much serotonin, so if your levels were a little on the high side, and the Cymbalta did have the effect of boosting your serotonin, this can indeed cause depression. As I said before, it is a common phenomenon among those who have taken the drug for nerve pain.

 

You are indeed working out the bead maths correctly. In the first few weeks it is easier to remove beads from a capsule, but when you get lower, the best way is to put all your beads in a container and then put the required amount into a capsule. There will come a time when you need more capsules and we can help with that too, as these need to be special coated ones, not your average gelatine jobs.

 

We can append the amount of beads required to the plan above, but will do this tomorrow if ok as here in the UK it is quite late and I want to have mt head screwed on properly!!

 

You can continue this thread as much as you wish - so please do ask us questions and update progress here. Hat will be back in the morning - and I will append the above during the day tomorrow so you know exactly how many beads you need at any given time.

 

Very glad you have found us and we will do all we can to help you get through this.


#9 invalidusername

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Posted 04 August 2019 - 07:30 AM

I have added the bead amounts to your plan... so for 25mg, you would take 30 beads out of a capsule before taking. Put these beads in a safe container as you will need them later. Then continue to do this for stage 1... take the beads out of the container as shown and put the beads you removed into this container for later...


#10 fishinghat

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Posted 04 August 2019 - 07:58 AM

I think IUN answered all your questions perfectly. We are all watching each others back here. All of us have been corrected at one time or another by some other member. We all know how important it is to get this right and sensitive egos are out of the question. If you have any concerns or questions just lay it on us. We will not be offended in any way.

 

 

One last comment, you need a new dr, he/she is an idiot. Like IUIN says the dr just doesn't understand the meds.


#11 Overwhelmed

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Posted 04 August 2019 - 02:07 PM

Thank you, IUN, for calculating the amount of beads for tapering during the 1st Stage, updating on my schedule & further instructions. I’m going to make a copy of my schedule & continue keeping notes.

Also, thank you for further information regarding depression & serotonin. You’re so right about her not understanding these meds, which you know & I’ve learned, is extremely dangerous to her patients. It’s time to find a new PCP!

I do have another question, it’s about the capsules. After I found y’all & started reading, I learned about bead counting. Knowing I’d need them, I already ordered empty capsules. After reading your post about them needing to be special ones, I think I screwed up. The ones I ordered say “Gelatin Capsules / Ingredients: Beef Gelatin & Water”. I’m thinking they’re the wrong ones? If so, will you please advise me on which ones I do need? I know I have plenty of time but I need to work around the TN flares.

Thank you, again & again, for all your kindness & help.

#12 invalidusername

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Posted 04 August 2019 - 02:51 PM

You are more than welcome - and regarding your primary... Hat says it like it is! But he is right. There can be no mistakes when it comes to your health.

 

Regarding the capsules, yes you should not use the gelatine ones as they will break up long before they should, thus releasing the balls too early. You need acid resistant capsules (also known as enteric coated). 

 

An example;

 

https://www.ebay.co....1-/302781915829

 

They seem to be so much cheaper in the UK than the US for some reason!! It's almost worth buying diet supplements and emptying out the contents!!


#13 lady2882Nancy

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Posted 04 August 2019 - 02:57 PM

Hi Sharon

Just to let you know that depression is a common side effect of cymbalta that no one seems to talk about.

I became so depressed while on them that I became suicidal. Of course my doctor sad I just needed to take them for longer in order for them to work. Funny thing that I was taking them for nerve pain and was not depressed before taking them. 

You are in the right place now and there is a long of help here. 

All the best to you.

Nancy


#14 Overwhelmed

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Posted 04 August 2019 - 03:27 PM

I agree wholeheartedly, Hat, I do need a different dr & will do exactly that. When she refused to write another script & I contacted my neurologist, she (neurologist) also told me I needed to find a new PCP. I’m so grateful that, even though it’s against their facilities policy to prescribe Cymbalta, she wrote the 3 month supply so I at least had something to taper with. I found it very interesting to learn they have this prescribing policy, not just for Cymbalta (although it’s their biggest no-no) but any antidepressants, for nerve pain. When I asked why, she told me, as a group, they weren’t seeing enough evidence that these drugs were actually helping with nerve pain. They were seeing more dangerous side-effects & withdrawal problems, than benefits. I’m also grateful that she highly suggested I seek help through a support group for tapering vs just stopping at 30mg, or I would never of found ya’ll.

I’m sorry, I didn’t mean to ramble on. I’m sure, throughout this process, ya’ll will be hearing plenty from me as it is.

As I told IUN...thank you, again & again, for your help & kindness.

#15 invalidusername

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Posted 04 August 2019 - 04:44 PM

I'd stick with that neurologist!!

 

Good to see you, Nancy :)


#16 Overwhelmed

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Posted 05 August 2019 - 08:23 PM

Hi Nancy. Thank you for sharing your experience of depression while on Cymbalta. I’m starting to feel somewhat better emotionally/mentally but I’m definitely a long way from being ok. One of my greatest fears is not finding myself again, that I’ve lost that piece that makes me, be me. Being here has given me so much hope but that fear deeply saddens me. Please forgive me if I’m out of line for asking, but do you feel that you’ve been able to heal emotionally?

#17 lady2882Nancy

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Posted 08 August 2019 - 05:21 PM

It took a while but yes now I feel more like myself again.

I have a few more ups and downs than I used to but my remedy now is humor. Surrounding myself with people who love to be happy and have a good sense of humor is the best cure that I can recommend. 

I still take some of the supplements recommended like a good vitamin, Extra Vitamin D3 (not much sun up north here) and my Omega 3 Calm. I have tried other Omega 3 product but I need the High Potency EPA formula.  Going to add some L-theanine back in to help with the headaches again. Hope it works.

Once the physical symptoms went away I had to work on me to get my head straightened out and by chance met an old friend who had me laughing so hard. The after effects of laughing were amazing. Really helped clear my head. We can get too wrapped up in our own thoughts and I advise finding a fun hobby or petting a pet. Love my two dogs. 

I still have some issues but they were there before the Cymbalta but Cymbalta made them worse. After all this time though I feel pretty good. 

Hope this helps you some. I still hang around the fringes here and check all the new posts. Some I follow until I know the person is alright and some I try to help a bit.  


#18 Overwhelmed

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Posted 12 August 2019 - 10:12 AM

Nancy, thank you for taking the time to talk to me about your experience. I can’t even imagine laughing again!! Based on what you’ve said, I can feel hopeful that, somewhere, “me” is still in there. So, my plan is, concentrate on my tapering off, deal with symptoms if or as they arise & then seriously con’t working on getting emotionally healthy again. And try to remember, it’ll take time.

I was already taking a good vitamin & extra vitamin D3. I just started on Omega 3, based on information I found here, so I made sure I got the correct one. I really understand about your dogs, I just adopted my little companion, Maggie, a 10+ yr old Teacup Chihuahua. She had suffered a lifetime of abuse/neglect & left abandoned to die. We’re going to help put each other back together again, she’s done more for me than any drug possibly could.

Thank you again, for your kindness, help & encouragement. Prayers for you as you con’t your journey to recovery.

#19 Overwhelmed

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Posted 12 August 2019 - 02:43 PM

Hat? IUN? Anyone?

Last night, I started my 1st taper to 25 mg by opening the 30mg Cymbalta capsule & removing 30 beads. But I had one heck of a time getting the 2 sections apart, they ended up flattened. I used a thin straw & finally got them pushed back out enough to get it put back together. Although bent, I don’t think (?) the creases created any holes. I shook it like crazy & none of the beads came out but there might of been a teeny hole I couldn’t detect. That worries me.

When I took the 4 capsules apart to count & divide for my bead estimate, I had the same problem. After pulling & twisting, I ended up mutilating the capsules, I had to cut the ends off to get the beads out. That time, I had put them in them in the fridge first, I had read somewhere that it helps with the static electricity when counting. Thinking that was the cause of not being able to get them apart, I then left them out for this past week & thought the problem was solved. Just as a test, I opened one of my left-over 60mg capsules, they came apart & went back together very easily. But I’m using my 30mg, not the 60mg.

I had gotten the wrong empty capsules at first. With IUN’s guidance, I re-ordered the enteric coated ones but they won’t be here for another 3 days (knowing my luck with the mail, it’ll end up being longer).

Do y’all have any tricks to opening those darn things? These are the generic from “Rising”. I’d be ever so grateful, as always, for help with my dilemma. Oh, it felt so good to remove those 30 beads! I’m on my way to freedom!!

#20 fishinghat

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Posted 12 August 2019 - 04:32 PM

I am afraid I am no help here. I never had that problem. That 5 mg drop is a big one so I hope you do OK with that.


#21 invalidusername

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Posted 12 August 2019 - 04:39 PM

I've never heard of the fridge trick either - is that new to you as well Hat?

 

Static should not cause a problem either. Generally, you would twist and pull for them to come apart. The hard gelatin will split very easily, but do not concern yourself about a microscopic hole! 

 

I am sure your enteric caps will be much easier to take apart.


#22 Overwhelmed

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Posted 13 August 2019 - 08:12 AM

Thank you, Hat, for responding. Maybe it’s this particular company, I don’t know, I’ll just be glad when the new capsules get here. As much as I’ve looked forward to getting to this point of tapering, I’m scared, too. I’ll be paying close attention for withdrawal symptoms & will definitely let y’all know if I start having problems. Thank you, again.

#23 Overwhelmed

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Posted 13 August 2019 - 08:49 AM

Thank you, IUN, for your input. I can’t remember where I read about putting them in the fridge, it was before I found ya’ll. After reading it, I did it before counting the 1st capsule, thinking static must be a problem. It’s not, there’s no difference between having them in the fridge or not. It’s good to know that a hole in the capsule (had to of been smaller than the bead, if there even was one) is something I don’t need to worry about. Hopefully, the new capsules will be here tomorrow. Thank you again, for your help.

#24 fishinghat

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Posted 13 August 2019 - 08:49 AM

I have never heard of the cold trick but at reduced temperatures most materials will crack easier. The gelatin used in most capsules is designed to dissolve around 89F so I would think that warming them in your hand for a few seconds would soften the capsule and make it easier to open without damaging it.


#25 Overwhelmed

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Posted 14 August 2019 - 11:02 AM

Hi Hat...that makes perfect sense, I’ll give that a try. If the new capsules do come today, I won’t have to worry so much about it. I’ll have plenty of extras so, if I have to, I can snip the end off these. Thank you for the tip.

#26 Overwhelmed

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Posted 03 September 2019 - 01:59 PM

Hello, everyone. I apologize for not being able to update y’all before this.

I’m following the tapering schedule that IUN so kindly made for me. I just finished my 3 wks at 25mg dly and on Sept 1st, started my next drop...20mg dly for 3 wks. I was doing ok, just occasional mild nausea & a few low-grade headaches, until 7 days ago. The nausea has gotten much worse & I’m getting really bad “pressure” headaches on a daily basis. I have TAC headaches, directly related to the Trigeminal Neuralgia, but these are definitely different. And, I’m also experiencing these strange, hard to describe, sensations in my legs. These are especially bad in bed at night. It’s like a tingling, prickly feeling but at the same time, a numb like feeling. I’ve never had anything like this before. Do you think think this could be related to Cymbalta withdrawal? You’re insight would be, as always, so appreciated.

Every time I remove beads from those capsules, I think of y’all. There simply are no words to truly express my deep gratitude for your help, your knowledge & most of all, your compassion & understanding. Y’all are in my prayers every night, may God bless you & comfort you, as you too, walk this journey.

#27 fishinghat

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Posted 03 September 2019 - 05:04 PM

I would say definitely withdrawal. Many have had these issues. Two choices I can think of...
Go up to 21 mg instead of 20 mg or just stick it out until things improve.

#28 fishinghat

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Posted 03 September 2019 - 05:08 PM

Also many members found that 100 to 200 mg of Suntheanine helped the headaches. Many members also found that this occurred when they were low on blood sugar and that eating something sweet would help alleviate the headaches. You night give it a try. If anything helps please ley us know so we can pass it on to others in the future.

#29 invalidusername

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Posted 03 September 2019 - 05:14 PM

Nausea and pressure-style headaches are all par for the course, and the legs, believe it or not, as Hat said, has done the rounds too. These things WILL pass.

 

I would also suggest going up a tiny amount if you can't hold the symptoms, but better if you can... and just put a hold on the reduction plan for a few extra days until you feel a bit more stable.

 

These things certainly take their toll, and this is why we suggest as slow as we have done! It could very easily be a LOT worse!! We don't want that for you...

 

God Bless.


#30 fishinghat

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Posted 03 September 2019 - 05:21 PM

IUN's comment reminded me. When you get stable again you probably need to drop at a much slower rate as thing only get worse from here.





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