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6 Months Off And Still Feeling Terrible


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#1 Hibiscus

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Posted 23 September 2019 - 06:51 AM

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!

 

 


#2 invalidusername

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Posted 23 September 2019 - 08:38 AM

Welcome Hibiscus.

 

That is one long endeavor you have been through. There are so many variables in there that it makes it very difficult to make an idea of it all. I also find it very difficult that you have not been given something of a diagnosis - this in itself must be so frustrating. To be completely honest, whilst I can say that some of your current symptoms can very easily be down to the Cymbalta withdrawal, again, there are many other factors in there which can be a contributing to the overall. 

 

The best person to shed any light on this would be FishingHat, who I am sure will be along presently. From my point of view I do not think a reinstatement of the Cymbalta is a good idea and I think that each symptom needs dealing with in isolation as it seems that you are quite sensitive to medication like myself, thus meaning one problem can be cured whilst making another. It is a horrible process and I wish you the best of luck.

 

IUN


#3 fishinghat

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Posted 23 September 2019 - 08:57 AM

Welcome hibiscus.

I love the detail in your report. It really helps put things in perspective.

 

Let me start by addressing the original symptoms (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). I may be way off but this sounds like Vitamin B6 toxicity. I have heard of this in two cases and they produced similar symptoms. Are you taking any vitamins with B6 in it?

 

I would say that you are in the middle of your withdrawal which often carries not only the typical withdrawal symptoms but also your original symptoms but more intense than before. The good news is that will all pass. The bad news is to survive until you pass the withdrawal stage. Luckily there are some things you can do that may help.

 

1) Clonidine for the anxiety. A prescription but this medication is very effective against anxiety and is not addictyive and has no withdrawal like benzos.

 

2) Supplements that increase your BDNF production. BDNF is a protein used to assit in repair/replacement of nerve cells. This would include things like 500 mg of Vitamin C/day, 600 mg of B-Acetylcysteine per day or 12 mg of astaxanthin. You might read the thread ...
https://www.cymbalta...r-brain-damage/
for further information. Please note that nerve repair/replacement is a slow process.

3) You might also consider reviewing the information in our ebook (free) at...
https://www.scribd.c...wal-Information
which contains a section on how to sleep better.

4) use of a LOW dose sublingual melatonin for sleep. I use...
https://www.amazon.c...e?ie=UTF8&psc=1
and 3 or 4 drops under the tongue will usually allow me to co to sleep within 15 minutes. Because it is absorbed under the tongue it goes into the blood stream quickly and wears off quickly so you don't have grogginess in the morning. I know of people that will use this even in the middle of the night when they can't get back to sleep on their own. Your body does build up tolerance to it so it can not be used every day.

I will keep my mind working on your problem and if I come up with any more suggestions I will let you know. Please keep us posted on your progress.


#4 invalidusername

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Posted 23 September 2019 - 09:08 AM

Just to give you the link to the eBook as it didn't copy over into Hat's message above;

 

https://www.cymbalta...tion-the-ebook/


#5 DThiessen

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Posted 23 September 2019 - 01:47 PM

At the time you say in 2014 were you taking any supplements like Vitamin B, or any other medications that act on the nervous system? As many of them can cause what you describe as side effects. Or if you had previously been on benzo's for a while before this happened and then came off, benzo withdrawal is horrific for paraethsias like that. 

 

Just a few thoughts. 


#6 Hibiscus

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Posted 24 September 2019 - 06:07 AM

Thank you fishinghat and IUN for your quick response and kind words! Much appreciated.

 

During this time it is good to be reminded that things will get better. It only needs patience. This can be the hardest part.

 

Very interesting thought regarding the Vitamin B6 toxicity . I have in fact been taking supplements but mainly for B12 defficiency back then. I will definately have to check that one. I have an appointment with my doctor next week so I will be able to discuss this. Also the clonidine and melatonin. Might really be worth a try since nothing else is working anymore and I honestly don't want to be stuck with the benzos.

 

The usage of N-Acetylcysteine to support regeneration of nerve cells is something I wasn't aware of. I will certainly give it a try since I have it at home anyway.

 

Meanwhile I will keep myself afloat with meditating and going for a walk. That helps a bit to destract and calm the mind. I come back to you with any updates.

 

Hibiscus


#7 invalidusername

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Posted 24 September 2019 - 05:11 PM

Just to clarify Hat's point 4 above as he is spot on about starting with a low dose of liquid melatonin (low dose is a place to start for anything, that said...). But be aware that there are now different strengths of liquid melatonin on the US market, and those that I know of vary from 1mg/ml to 10mg/ml.

 

Hat's suggested dosage is in reference to the 3mg/ml from the link, so an equivalency will need to be exercised if "bulk buying" and saving with the more potent stuff. We have seen others buy the stuff not knowing what it was, and to mix 1mg and 10mg up is not a good thing...


#8 fishinghat

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Posted 25 September 2019 - 09:01 AM

Good point. Thanks IUN.


#9 Hibiscus

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Posted 02 December 2019 - 11:22 AM

Hello everyone, it's been some weeks since my last post and things have not developed the way I hoped they would. Well, there has been some positive change, but for the most part I am still struggeling.

What strikes me is that it's been 8 months now since the last dose of Cymbalta and still there are these ups and downs, mostly downs regarding symptoms. I jus can't seem to stabalize. Just when I think this is it now, symptoms start again like headaches, anxiety or dizziness. Lately I started having muscle pain and nerve tingling again. This was gone in October until about two weeks ago.

But the thing that really bothers me the most is that my sense of smell has deteriorated tremendously. It occurred when the headaches and strange sensations in my head started. I can only assume this is somehow linked to the imbalance of neurotransmitters due to the withdrawal. I recall having experienced this more or less severe everytime I went down with the dosage during tapering. However, as this does not seem to be a common symptom during withdrawal I am somewhat clueless and fear for it not to get better. Since I haven't had a cold or any viral infection in the last months it cannot be connected to that kind of thing. Is it possible that Cymbalta withdrawal is involved?

 

Recently anxiety has said hello to me again as well. It seems I have tried everything possible in terms of supplements and herbal remedies but I since also sleeping is difficult again I had to take benzos again. So far only 3 times this week, but having been off all meds for about 7 weeks, this is frustrating. At the moment I am honestly considering taking another SSRI just to have a normal life again as the situation is getting increasingly difficult for my husband as well. He is currently under enormous stress at work and I wouldn't want to add to that. He's really supportive but I can see that it's stressing him a lot emotionally. On the other hand I am not fond of starting another SSRI and having to get off of that at some point. I really don't know what to do. Would it be wiser to push through and hope for the light at the end of the tunnel? Would taking another SSRI be reasonable and would it work?

Hoping for your input and help,

Hibiscus


#10 fishinghat

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Posted 02 December 2019 - 12:33 PM

good to hear from you Hibiscus. This is the tough part of withdrawal as you get so wore down from the rollercoaster. Don't worry, the 3 benzos a week shouldn't be an issue for a few weeks. This is so common including the smell issue which is called phantosmia. Many members have suffered from this. There is a complete section in our ebook on this. This will pass as will the other symptoms.

I would urge against taking an ssri. It would take it weeks to kick in, it may not work and you will just have to withdraw from it later. You have not had any luck with Suntheanine, lion's mane mushroom extract, NAC, Ashwagandha, diphenhydramine (Benadryl) or any of the other supplements/otc meds?

#11 Hibiscus

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Posted 02 December 2019 - 01:17 PM

Thanks fishinghat for your prompt reply! I guess you are right regarding the rollercoster. It's just so hard to have a bad episode again when you were somewhat better even if only a few hours or days.

Regarding the supplements/meds I tried, Ahswagandha and Suntheanine worked for a while which is why I had an episode of feeling a little better in between. However, now it seems it does not work anymore. It even increases the symptoms of tingling and muscle pain somehow. Therefore I stopped taking it. I also tried Benadryl, didn't do anything for me, unfortunately.

The NAC induced earringing, so that was out too.

What I forgot to mention is that upon my doctor's recommendation I started taking St. John's Wart about three weeks ago. When the pain and tingling in the legs got worse again I thought this might be linked to the St. John's Wart, therefore I stopped taking it a week ago. Don't know if this is the reason since the dosage was minimal (45 microgramm), not adequate I suppose.

Now I am only taking Omega 3 and alpha liponic acid (I read in several research papers that it can reduce free radicals significantly- are you familiar with this?) and in the evening 2 mg Lormetazepam.


#12 fishinghat

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Posted 02 December 2019 - 01:36 PM

just so you know, St. John's Wart is a ssri and has a withdrawal of its own. The withdrawal is similar to Cymbalta but of less severity. I would expect that stopping the St. Johns Wort would worsen your Cymbalta withdrawal symptoms. However that was a very low dose.

I would strongly suggest the Lion's Mane Mushroom extract as it has been very helpful to me during my benzo withdrawal. There are three forms. Water extract, alcohol extract and dried powdered mushroom. For withdrawal the water extract is the best. I use …

https://www.amazon.c...e?ie=UTF8&psc=1

I used 2 capsules a day and felt very good within 1 to 2 days.

#13 invalidusername

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Posted 02 December 2019 - 03:44 PM

Regarding the ashwagandha, are you aware that people often reach a tolerance point? Myself included. Most people who use it to stabalise find they get to a point - be that after a couple of weeks or a couple of months where it seems to have lost its vitality. This is when you need to take a break and start up again. I have not quite heard the same for Suntheanine, but I guess it can affect people in different ways. 

 

I also reiterate what Hat said about SJW - most people see this as a herb that can be just stop/started, but it isn't. The same is true for Kanna if used for a suitably lengthy period. They should be treated in the same way as an SSRI.


#14 Mxpro32

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Posted 30 January 2020 - 06:10 PM

Is theanine helpful?



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