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Forced Off C, Looking For Advice


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#1 CatLover

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Posted 30 June 2016 - 02:14 AM

I have been on C for 10 years (give or take a year). Most of that was at 120mg. I was relieved when a generic came out as 50$ a month was a lot! Turns out I am very allergic to the generic I tried. I was told to "try a different generic" but no pharmacy can guarantee that I can always get that same generic. So I have had to keep getting the brand name. 

That is when EliLily started to price me out. It went from 50$ to 80$ to 110$ to 300$ all in a few months time. I literally couldn't afford it!

So I decided to go off it. I knew it would be hard but wasn't aware that it would be this hard or dangerous. Had I known that it would be this way I never would have gone on it. 

 

On March 29 I went from 120 mg to 60 mg. It was a horrible few weeks of nausea, vertigo, pain, dizziness, emotional bouts, increased anxiety, and gastrointestinal pain. Then I got urges to self-harm. And then got depressed. Also was awake for over 24 hours and have had memory lapses. I have lost two days in total so far. 

 

On May 11 after finding a constant balance on the 60 mg decided to drop to 30 mg C and add 10 mg Prozac. It was okay at first, things started to get bumpy but everything was manageable. On the 18th I went up to 20mg Prozac. I started to get diarrhea every day. Painful gastrointestinal cramps it was horrible. On the 23rd I was in so much pain I was bawling. Nothing helped. Luckily my Doctor happened to call at that exact moment on an unrelated issue. She told me to stop the P and go back to 60 C. I did and waited it out, stayed on 60 C until June 15. 

 

I couldn't keep asking family members to shell out 200 some odd dollars. So I looked up Fishinghats bead titration idea. I decided it was the only way. 

 

I counted 3 60 mg pills. I got 201 beads, 198 beads, and 200 beads. Ideally I would have done this over a hundred days. Unfortunately the money wouldn't allow that. So I decided on 198 beads, over 66 days. 

 

Day 33 will be halfway and will be 30mg. I am currently on day 16. I have been keeping a detailed journal of what I go through everyday. 

 

So far these first two weeks haven't been so bad. Lots of night sweats, freakishly vivid dreams, pain is higher than normal. I essentially feel like I have been digging holes for days and days endlessly. 

 

June 26/27 was the scariest this whole nightmare has gotten. My entire body felt like it was rejecting itself. I felt like my nerves were restless and trying to escape. Like an itch you can't scratch. My nerves everywhere felt like they were vibrating. It was the worst in my brain. 4mg valium and getting love from my cat and I eventually passed out. 

 

Today marks two months journey. 

I suppose I am most apprehensive about dropping dose because if I start having bad gastro pain (and the loveliness that follows) it means I am chained to my house. 

 

Has anyone else had these issues when bead counting? 

I suppose I am just looking to see what other people have done. I am supposed to finish day 66 on Aug 18. One day before I am to go to a concert for my birthday. Come hell or high water I will make it. 

Does anyone have any suggestions on how to ease the withdrawal gastro issues? 

 

Thank you all for reading and I will keep you updated!


#2 fishinghat

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Posted 30 June 2016 - 08:05 AM

A job well done Cat. A tough time but you have been a trooper.

 

The digestive troubles are common during withdrawal but your case is one of the worst I remember. I leaned heavily on Imodium AD. It really helped. A little pepto from time and I was good.

 

Hang in there and keep us posted.


#3 sandinafh

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Posted 30 June 2016 - 11:52 AM

Hi CatLover - I just wanted to let you know, I was on Cymbalta for 11 years. I started at 30, went up to 60, then back down to 30 and eventually went to 20. I recently went completely off of it, with the help of a psychiatrist who was "cross-fading" my wean with a small dose of Zoloft. You can read my other posts to see my full story and status on it, but in my experience I believe I had a delayed withdrawal due to adding the Zoloft. However, I truly believe that without the Zoloft (and God!) I couldn't have done it. It was rough but I made it and I'm starting to feel better. 

 

I did have a LOT of stomach/bowel issues as a symptom of getting off the Cymbalta. I won't go into detail but it was a full month's worth of not so pleasant bathroom visits and LOTS of Pepto Bismol. 

 

My advice to you, like I was told by these great people in this forum, is to be sure and drink LOTS of water, take Omega-3, a B-complex and a multivitamin, get lots of rest and exercise. It has helped me tremendously, and I am not one to drink water or exercise at all. 

 

Keep us posted!


#4 FiveNotions

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Posted 30 June 2016 - 03:38 PM

chamomile tea helps some folks with the gastro issues (I wasn't one of them) ... what worked for me was ginger ...ginger tea (really strong), ginger ale (old home remedy for sure), and ... candied ginger ... I went through tons of it ...

 

Also, the basics that Sandina mentions ...

 

And, more than anything, just time, rest, and patience ... realizing that all these symptoms are just temporary ... all part of our brain / bodies making their own adjustments to life without the poison ...

 

Please keep us posted on your progress !


#5 CatLover

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Posted 30 June 2016 - 09:06 PM

Thank you all! 

 

I just spent 6 hours counting beads and man o man am I tired! 

 

My doctor suggested that since I live in Oregon I try some recreational plants to help with the symptoms. I told them what I was going through and they sold me a strain that has helped a lot since I got it. It takes my mind off the horrible symptoms and calms my stomach down. She told me she rather I do that than take a benzo. I agree. One I can stop doing at any time the other comes with its own issues. 

 

My med doctor thought the bead counting was the most ingenious thing she has seen! 

 

I went on C originally because I grew tolerant to Prozac. I was 16 when I was put on it for general anxiety disorder and ocd. They put it with Topomax (for migraines). I got off the T easy. I found out the migraines were from an extreme deficiency in B12. After upping my levels with shots I was all good. But I am still fighting to keep my Iron deficient anemia in check. 

Turns out I was actually on the Autism spectrum so the C was never really doing me much good. 

 

I will definitely add Pepto to my med cabinet! 


#6 PtldFrank

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    Been on Cymbalta 10+ years. It's time to get off.

Posted 30 June 2016 - 11:47 PM

You've piqued my curiosity CL.  I'm on the spectrum too, but I've never heard of that affecting Cymbalta'ss effectiveness.  What's it do?


#7 FiveNotions

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Posted 01 July 2016 - 08:41 AM

Ditto here ... never heard about this ... I'll do some research later today on a work break ... FH, do you have anything on this in your "research stash" ?


#8 CatLover

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Posted 01 July 2016 - 10:16 AM

I was undiagnosed until I was 26, essentially all the anxiety I was having was because I was unaware that I was having sensory disorder issues and that I was feeling everything differently. Since being diagnosed and receiving helpful therapy and getting the right doctors I have not had the anxiety like I used to. Life is a TON easier!


#9 fishinghat

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Posted 01 July 2016 - 10:25 AM

Well FN she was taking the Cymbalta for anxiety disorder so I understand that. After coming off the C she found out extreme Vitamin B12 deficiency. Now the link between autism and ssri/snri is upheld by many research articles. Vitamin B12 deficiency has long been linked to anxiety and is a typical item for initial testing for most psychiatrists. I am very surprised that no one had tested for this at an earlier stage in your treatment CatLover.


#10 CatLover

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Posted 03 July 2016 - 01:23 PM

I lived in SoCal and Kaiser had a horrible mental health department. When I moved to Oregon and eventually got diagnosed I found a doctor who treats mostly people on the spectrum. Given we are generally not text book cases. 

 

She did a blood test for all sorts of things. It came back with a B12 level that was extremely low and I had Iron deficiency anemia so bad she almost sent me to the hospital to get the iron. I was still on the C. After spending almost two years getting those levels to normal numbers I found I was not as tired, anxious, and rarely got headaches. So we took me off Topomax. 

 

Now I am trying to get off the C. I came to the decision yesterday that I am going to go off all mental health drugs for a year to let my brain reset. Going on another right after C doesn't make any sense because I have no clue what anxiety I have and when etc. I need to find out to know what I want to do about it. 


#11 Tawnya10

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Posted 09 August 2016 - 11:39 PM

I'm so glad I found this site and this thread! I also suspect I may be on the spectrum. I am using cymbalta with few positive and many negative side effects. I also have Elhers-Danlos Syndrome so I have pain issues. I was put on crapolta for mood and pain issues before I was diagnosed with EDS so my psychrist doesn't want to even consider titration. I started a regime of CBD and THC treatment for PTSD and started re-association with my body. Once that process started the cymbalta became intolerable; it felt like I was poisoning my body with every pill. I was on a 20mg dose for about 6 months (I was on venaflixine for a year before I started taking cymbalta). Today is my fourth day without cymbalta and I am starting to feel the withdrawal effects.

I wanted to add that CBD and THC treatments (ingested) are helping with the withdrawal effects. Whatever your moral issues, it works and I am also able to manage my pain and anxiety without all these horrible drugs. I do not have the massive body disassociation issues I am having with narcotic pain killers.

#12 fishinghat

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Posted 10 August 2016 - 08:28 AM

No one here will judge you. That is not what we are here for. It sounds like you are off to a good start. Be sure and stay well hydrated and I would recommend some omega 3 and possibly 500 mg of vitamin C. They may help.





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