Hello,
I am new to this forum but I have been following and reading a lot of posts in the months before and after having started my withdrawal. They have been a tremendous help. I don't know what I'd have done if I hadn't came across this forum. So thanks for being there and providing all this wealth of information and support!
I apologise for this long post, but I felt I had to provide the context of where I am now.
I started taking Cymbalta in March 2014 after having experienced months of severe nerve pain, tingling, burning and increasing numbness which affected my whole body. Additionally due to the increasing severity of my symptoms over time and no clue where they came from and how to treat them I developed severe sleeping problems and anxiety with panic attacks which I never had before in my entire life. About 4 weeks into this mess I was prescribed Gabapentin which I took about 4 weeks to ease the nerve pain and tingling. But of course I didn’t do much to the anxiety and sleeping problems. Therefore my neurologist suggested to try quetiapine 25mg since the zopiclone which I took now and then to be able to sleep is highly addictive and he was also convinced that my symptoms would just vanish by taking it. By then all tests that had been done so far had produced no tangible results and I did not seem to fit into any disease criteria so I was diagnosed with some sort of depression. Being at my wits end I started taking the quetiapine, 25 mg in the evening. It did help with my sleep and reduced my anxiety and panic attacks. But my other symptoms were still there and worsening. Much to the surprise of my doctors.
And of course I had side effects of the quetiapine. Their response was to increase the dose to 50mg or even 75 mg. I tried this but I became so sleepy and dizzy during the day I couldn’t do anything. This was just not working. During this time my sister suggested to go see her alternative practitioner. He prescribed acupuncture and herbal medicine which I took about 6 weeks. Slowly I saw some improvement and the nerve pain, tingling and burning faded away. Only the numbness persisted. I am of course not sure if it was related to the herbal stuff or just coincidence. I will never know for sure. I was so happy that I could see a light at the end of the tunnel. But it lasted only for a couple of weeks since the tingling was not completely gone and had started to work its way up to the head. I developed severe headaches with stuffed nose and problems smelling. This was a huge drawback I just couldn’t handle. I had no energy left. This is where my doctor introduced Cymbalta. I was rather sceptical since all other drugs had not helped with the numbness, but I finally took them. I was desperate to be my normal self again. Also my neurologist told me they had little side effects and were easy to stop. Imagine! Had I known.
I started with 30 mg going up to 60mg within two weeks and kept that dose for about 1 ½ years. At first the side effects were manageable. Mild nausea, dry mouth, digestion problems, shivering, sweating. They became less present the longer I took it. And within three months being on it I felt really good. No pain, no tingling, no headaches. My sense of smelling improved, I felt fit again after a long time. But then I noticed other side effects: heartburn, sleepiness and dizziness, I gained weight without having changed my diet or physical activity level, libido problems, blurred vision. I didn’t like those and I felt good so I decided to quit Cymbalta. I was aware that I had to do it by tapering down. But now I know I went way too fast. In October 2015 I went from 60mg to 30mg. This was almost without any withdrawal symptoms. Then within another month from 30mg to 0 mg. For 5 weeks off of it I felt really good. Much better than with the drug. Myself again. In week 6 I felt pain in my joints and then slowly over the following weeks the nerve pain, the tingling came back I couldn’t sleep anymore, I was nauseous and dizzy and I developed restless legs, the numbness came back with a vengeance. To cut it short I felt miserable and went back on 30 mg to stabilize. It took some time for all the symptoms to improve but they did. So I was able to stay on 30 mg and kept that dose for 6 months. I still was convinced to quit since the side effects were not really tolerable for me anymore. Especially the weight gain, sweating, heartburn, blurred vision, libido problems and the interference with my period. During this time I came about this forum, thank god!, and I started my tapering in March 2016 with bead counting. I reduced the dose by 10% each 2-3 weeks, depending on the withdrawal symptoms. By the end of 2016 I was at around 7 mg when I noticed the headaches and the stuffed nose a smelling problems again. They persisted 2 months so I stayed at this dose. When I felt better I tried going down with the dose again, but as soon as I did withdrawal symptoms, especially sleeplessness and headaches occurred. Therefore I kept the dose of 7 mg until April 2018. From there I papered even slower down, approximately 5 % each 4 months until I reached 2 mg in March this year. The previous 6 months during the withdrawal I had terrible sweating, sleeplessness, mood swings, dizziness, headaches and for 5 months no period not being pregnant or in menopause. The latter caused me to stop the drug finally at 2 mg on march 18th 2019 as I just couldn’t take it anymore.
Two weeks I felt fine besides the sleeplessness, but then muscle aches, nerve pain, tingling, muscle cramps occurred for about a week. I started to take Ashwagandha and L-Theanine as well as Omega 3 and the symptoms reduced to a manageable level for 2-3 weeks. Suddenly they came back again with a vengeance and did not improve again with the supplements I already took. This went on for 2 weeks when they suddenly stopped and I felt considerably okay. I only had cramps in both my feet in the morning, but compared to before that was minor. And my period came back one month after stopping Cymbalta. So I was happy and thought I had the breakthrough after 3 months. But no. Hell broke loose in July 2019 I felt I had all my initial plus the withdrawal symptoms: Tingling, nerve pain, muscle cramps, joint pain, sleeplessness, diszziness, nausea, bloated stomach,numbness. And after the numbness got so bad and I had terrible neck and shoulder pain and headache again which affected my sense of smelling I additionally had the worst panic attacks. Nothing has helped so far to stop or even improve this a little. So now 6 months off I start thinking about going back on Cymbalta just to make this all go away. I have no energy left. I only survive on occasional benzos to fight the anxiety and the sleeplessness, but other than that nothing really works. Is this even possible after such a long time off this stuff that I am still in withdrawal? Is this old symptoms of an underlying disease returning? I have no clue. Should I restart the Cymbalta or take another SSRI? I tried Hydroxizine for the anxiety but it did not work for me unfortunately. L-Theanine does a bit. I am really desperate for advice because I don’t know what to do next.
Thanks for your support!