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My Story (2 Months Off)


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#1 Anon1990

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Posted 08 February 2019 - 02:28 AM

Hi,

 

I think I started Cymbalta in 2013, 60mg daily. I tried to come off around the end of 2016 and despite what I thought was a reasonable taper (2-3 months) I had one of the worst periods of my life, couldn't concentrate, extreme irritability and anxiety, brain zaps, insominia. Ended up losing my job, and I have no doubt this was a factor. Given that train wreck I went back on in early 2017, but to a 30mg/60mg alternating plan.

 

I'm a younigsh guy (almost 30 now) and the sexual dysfunction was causing me headaches, very long time to orgasm, loss of libido. When things were more settled (including in my personal life, part of the reason I initially started meds - parent's divorce, bad breakup at same time) I once again looked to get off. I talked to my GP and came up with a plan to taper again. This time I used another more natural mood supplement (Valdoxan) to help. This time not as disastrous. Still a difficult process and suffered irritability and brain-zaps. Found panadol quite helpful for the headaches. 

 

I'm now 2 months since my last Cymbalta capsule. The brain zaps have stopped. However, I still feel like I'm pushing through pain even if I don't have acute symptoms. Still quite irritable. Have had some weird acne on my chest/neck - not sure if related to the withdrawal or separate. 

 

More recently, I've been dating a new girl. I'd noticed my libido hadn't bounced back since stopping Cymbalta. If anything things are worse in that department, my libido is at rock bottom and my genitals don't feel responsive as they should. I'm terrified as a young man if my sex drive gets taken away from me. I've done some reading around and there's some pretty horrific stories about loss of libido continuing for years after coming of SSRIs/SNRIs. I'm praying it's a temporary thing as it's still relatively early days after being on this medication for 5 years. Nonetheless, I'm scared.

 

If anyone has any positive news stories in this regard I'd be very happy to hear them,

 

Thanks


#2 gail

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Posted 08 February 2019 - 09:24 AM

Welcome Anon,

I understand that you must be pretty nervous about this situation.

Fishinghat should be along, I hope, he has all the information that you need on the subject.
He is very knowledgeable on this subject. Be patient, he'll show up!

#3 fishinghat

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Posted 08 February 2019 - 06:05 PM

Hi Anon

This is a common event after coming of a ssri or snri. The condition is called pssd (post ssri sexual dysfunction). In most cases it is pretty well back to normal in about 3 months. Unluckily it can also be permanent. I went through this when I came off in 2013. Unluckily mu result was permanent. I have been to see several specialists and they assure me it can not be treated.

There is thread in the Medical Support section called Summary of Cymbalta Withdrawal that has a detailed section on this subject which contains the recent research associated with this condition. Also in my personal library I have a collection of information on what laymen have tried to treat this condition but I wouldn't worry about that yet. Normally during this period the testosterone levels drop severely. DO NOT START TAKING TESTOSTERONE REPLACEMENT THERAPY. Once you start that then natural production will never go away. My suggestion is get your free testosterone levels checked now and again in one month. If they are rising or within normal range then you should recover.

#4 invalidusername

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Posted 08 February 2019 - 10:06 PM

Anon,

 

I'll just begin by saying that having gone through three very difficult circumstances of withdrawal, divorce and break-up at the same time - you have done incredibly well. I hope you stop once in a while to recognise this. Regardless of the trauma it may have caused, this cannot take away the mental stamina and bravado you have put in yourself. Well done man.

 

Hat is the one in the know on this, but just don't write-off the mental state of affairs as this can also do a lot for "that" department. Whilst I am fortunate that I do not suffer such problems - although depression/anxiety does all it can to put things on hold - so many people have issues that they will not have even considered that can cause sexual problems, which is why as confidence resumes, as do these issues. I agree that additional pills is not the answer. Testosterone will be very low, mental affairs will have taken their toll. I sincerely think this will rectify itself from what you have said. 

 

Finally, as much as it is a "don't think of a pink elephant" issue, becoming anxious about such issues will only delay progress even more. But yes Easier said than done. I hear you!!

 

IUN


#5 Anon1990

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Posted 09 February 2019 - 03:32 AM

Hi Anon

This is a common event after coming of a ssri or snri. The condition is called pssd (post ssri sexual dysfunction). In most cases it is pretty well back to normal in about 3 months. Unluckily it can also be permanent. I went through this when I came off in 2013. Unluckily mu result was permanent. I have been to see several specialists and they assure me it can not be treated.

There is thread in the Medical Support section called Summary of Cymbalta Withdrawal that has a detailed section on this subject which contains the recent research associated with this condition. Also in my personal library I have a collection of information on what laymen have tried to treat this condition but I wouldn't worry about that yet. Normally during this period the testosterone levels drop severely. DO NOT START TAKING TESTOSTERONE REPLACEMENT THERAPY. Once you start that then natural production will never go away. My suggestion is get your free testosterone levels checked now and again in one month. If they are rising or within normal range then you should recover.

Hi both,

 

Thank you for the responses. It's nice not to feel alone in a pretty scary time for me. I'm seeing my GP next week and will ask about the points raised, keen not to go for more pharma "answers" given the hole I'm in now because of it. Getting off Cymbalata has been travelling to Mordor (to use a LOTR analogy). Hard to keep pushing when you don't know what the timeline is...

 

Thanks again.


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#6 invalidusername

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Posted 09 February 2019 - 10:43 AM

Couldn't have said it better myself - really hard when you don't see a finish line.

 

Let's hope you can steer your way back to Bag End.. or maybe I could have a word with Elrond and get you a few nights in Rivendell...

 

Oh dear - I've just outed myself :)


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#7 gail

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Posted 09 February 2019 - 02:15 PM

IUN,

Maybe I missed something, can Viagra help temporarily with this?

#8 Anon1990

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Posted 10 February 2019 - 02:34 AM

IUN,

Maybe I missed something, can Viagra help temporarily with this?

I'm sure it might be a temporary band-aid fix. However, at this stage, I'm done with big pharma.

 

I want to be me again. I want to return to natural even if I have to go through hell (which it seems I'm doing).

 

I'm struggling to get by atm despite taking multiple supplements and Valdoxan. 

 

Complete loss of positivity/warm feeling inside me, I feel like like a hollowed-out spectator to society now. I'm hoping this is just prolonged withdrawal after multi-year use of cymbalta. The acute irritability and despondency (and physical side effects) are hopefully indicators that my body is still hating the adjustment. I'm sure if I took another capsule I would get instant relief. 

 

"If you're going through hell, keep going" is what I'm telling myself. 


#9 fishinghat

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Posted 10 February 2019 - 09:01 AM

I have to ask what you think of the Agomelatine (Valdoxan)? It has failed to be approved in the States so you are the first one I have ever 'spoke' to about its effectiveness on depression. For others, it is NOT used nor is it effective on anxiety.

#10 invalidusername

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Posted 10 February 2019 - 10:35 AM

The reduction in testosterone is a different set of symptoms and issues of those that usually lead people to take Viagra, and it is not primarily the cause it was produced to overcome. Therefore, the likelihood of it working in my opinion is reduced in this respect.

 

Beyond that, there are the issues that if it DID work, it can further complicate things for the op to recover... and if it did NOT work, this can of course bring its own levels of anxiety for the situation.

 

I think he has the right idea in leaving well alone and letting the body do it own thing for a while before considering anything.


#11 fishinghat

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Posted 10 February 2019 - 10:51 AM

I have made a list of all the possible treatments that people have tried off of 15 different pssd websites and am continuing to evaluate who had successes on what products then I will compare to the Medical journals. When I finish I will post what I find.
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#12 Anon1990

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Posted 10 February 2019 - 03:52 PM

I have to ask what you think of the Agomelatine (Valdoxan)? It has failed to be approved in the States so you are the first one I have ever 'spoke' to about its effectiveness on depression. For others, it is NOT used nor is it effective on anxiety.

 

It's hard to say how effective it has been. However, it has helped put me out like a light sleepwise. My first time getting off cymbalta I couldn't sleep properly which made everything exponentially worse. As for A&D, hard to know where I'm at currently and what's withdrawal or baseline state. P.s. can someone explain in layman's terms why testosterone can be low after coming off ADs?


#13 fishinghat

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Posted 10 February 2019 - 04:31 PM

ADs effect two neurotransmitters in the brain, serotonin and norepinephrine. These two neurotransmitters primarily effect two parts of the brain. These areas regulate emotion AND the pituitary area of the brain which controls many hormones and enzymes including testosterone. Their is a second effect as well. ADs effect serotonin in the body which is directly related to testosterone production.

 

I hope that is not to deep.


#14 invalidusername

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Posted 10 February 2019 - 06:55 PM

...which is why many people find they become emotionally "numb" when on an AD, then to be told they "have become a totally different person" when off. It is no coincidence. Not to say that they change who are are per se, but when our emotions are stunted, this is what occurs. Back in the day, they used to lobotomise severe patients by removing the part of the frontal cortex (the part of the brain that spans the length of the forehead) that controls mood. Such people then became emotionally dry. Fortunately we have pills now, but they still have the potential to do a very mild case of the same. AD's are more complex when they get into our system... more than we will know for a few years yet. 


#15 Anon1990

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Posted 15 February 2019 - 04:40 AM

I'm sure it might be a temporary band-aid fix. However, at this stage, I'm done with big pharma.

 

I want to be me again. I want to return to natural even if I have to go through hell (which it seems I'm doing).

 

I'm struggling to get by atm despite taking multiple supplements and Valdoxan. 

 

Complete loss of positivity/warm feeling inside me, I feel like like a hollowed-out spectator to society now. I'm hoping this is just prolonged withdrawal after multi-year use of cymbalta. The acute irritability and despondency (and physical side effects) are hopefully indicators that my body is still hating the adjustment. I'm sure if I took another capsule I would get instant relief. 

 

"If you're going through hell, keep going" is what I'm telling myself. 

It's been an interesting week.

 

I've made a concerted effort to do things right. I've been meditating, cut way back on alcohol (had 2 beers tonight, first in a week), having my supps - feel quite a bit better moodwise and libido has benefitted too. I think the girl in question lost interest unfortunately after I came unglued last time I saw her. Nonetheless in a better headspace.

 

Saw the Dr today too. When I mentioned libido problems and coming off Cymbalta she basically scoffed like it was impossible. Then when I raised PSSD/concerns from things I'd seen on the internet she basically dismissed it and acted like it was the realm of conspiracy theorists. I felt a little angry at that kind of arrogance and dismissal of people's life experiences. 

 

Anyway, I know how hard it is to come off this drug and that's a fact. Another week negotiated.


#16 invalidusername

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Posted 15 February 2019 - 08:42 AM

 

Saw the Dr today too. When I mentioned libido problems and coming off Cymbalta she basically scoffed like it was impossible. Then when I raised PSSD/concerns from things I'd seen on the internet she basically dismissed it and acted like it was the realm of conspiracy theorists. I felt a little angry at that kind of arrogance and dismissal of people's life experiences. 

 

Unfortunately you have to take these medical "professionals" as you find them. A lot of them do not like being told how to do their job, but as Hat has pointed out on a number of occasions... with 1000's of medical journal papers being published every month, it is just not possible to keep up with the latest in drug developments. This is however, not an excuse. Doctors should be aware of this. Four years at medical school is not a "be all and end all", it is an ongoing commitment to provide care. 

 

I have been through this so many times during withdrawal. Doctors just do not want to listen. I have emailed and printed off papers documenting what I am trying to explain, but they simply do not care. Emails are not replied to, the papers are handed back to me and end up in the recycling. 

 

More often than not, we end up being the "captain of our ship", and it is places like our forum here that help those who have fallen prey to such a realisation!


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#17 Anon1990

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Posted 26 March 2019 - 04:35 AM

Another 6 weeks on... taking me to around 4 months off. I've stopped Valdoxan as of a week ago. Relatively easy to come off - certainly not like our little friend here. Still don't feel like myself. Low mood still/zero positive feeling, libido still very low, tension type headaches and metallic taste in my mouth. Still if there's a slight positive those symptoms might be a little less intense than when I last wrote. Still continuing on with my journey and hope I can help others. What helps: green tea, meditation, lots of water, fruit, exercise, journalling and sunshine. What doesn't: alcohol, negative thoughts.
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#18 gail

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Posted 26 March 2019 - 07:55 AM

Hello Anon,

First, thanks for the update. Four months is still early, the worst is over.

The best is to come. Feeling blah and neutral is normal at this stage.

In the next months, improvement should set in, and you should be more yourself.

And the symptoms are getting less and less severe, this a pretty good sign! Hang in there!

#19 Anon1990

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Posted 26 March 2019 - 03:58 PM

Hello Anon,

First, thanks for the update. Four months is still early, the worst is over.

The best is to come. Feeling blah and neutral is normal at this stage.

In the next months, improvement should set in, and you should be more yourself.

And the symptoms are getting less and less severe, this a pretty good sign! Hang in there!

Thank you Gail, appreciate the kind words. Hanging in there. Will provide another update at some point. 


#20 invalidusername

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Posted 26 March 2019 - 05:03 PM

Hi Anon...

 

This is the benefit of writing on these forums - you can always look back to see how you were. I am having a particularly bad day, but looking back I noticed that a bad day has been a lot worse. I managed a half-day of work, eaten 2 square meals so far and been chatting away on the forum.

 

Like you say, sure... things could be better, but they could also be a lot worse. Patience is ever the virtue in these circumstances. You are doing well to now be at the 4 month mark. As Gail said - worst is over. Keep the faith my friend

 

IUN


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#21 Anon1990

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Posted 28 March 2019 - 03:04 AM

Thank you IUN. This forum and the helpful posters on it are genuinely appreciated and validating. I'm sorry to hear you are having a rough time of it. Keep putting one foot in front of the other. 


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#22 invalidusername

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Posted 28 March 2019 - 05:00 PM

Thanks Anon. Got through the day - did a full day of work and grocery shopping. Walking 'round like I am invisible to the world, but it got me by.

 

Chin up, and try again tomorrow!


#23 Anon1990

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Posted 05 April 2019 - 09:40 PM

Wasn't expecting to write again so soon - but here I am. Seemed to have had a breakthrough of sorts, the last week I have felt a lot better. It almost feels as if the constant low-grade hangover I had just left. This would have been around 4 months since the last dose of Cymbalta. My head feels clearer, I've started having more vivid dreams (something I'd never really reflected on as being potentially affected), I've had inklings of 'being myself' again, rather than the pained zombie I've been at times. Was it just the passage of time? The only other things I've recently changed were adding a magnesium/calclium/Vit D (all in one) supp before bed and a folate supp in the morning.

 

My supp routine is now:

 

AM: NAC, Fish Oil, L-methlylfolate, Stress & Anxiety Supp (NutriVital, containing Ashwagandha etc) , SAM-E.

PM: Ma/Ca/Vit D supp. 

 

It's quite a bit to take (and costs a bit), but compared to taking anti-depressants I'm much happier with this route. 

 

Fingers crossed the gradual improvements continue. Hang in there for all those suffering.


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#24 fishinghat

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Posted 06 April 2019 - 07:28 AM

Really glad to hear about your improvements. Do be careful not to over do it too soon. These symptoms can come crashing back very easily.

Also ne careful with the supplements. The L-methlylfolate, calcium, magnesium and vitamin D can all build up in the body to toxic amounts. You might want to get your Calcium, magnesium, folate and Vitamin D levels checked every 6 months to see how you are doing.
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#25 invalidusername

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Posted 06 April 2019 - 08:30 AM

Glad to her of your progress - that is certainly good news for fellow sufferers. 

 

Agree with Hat and being cautious with the supplements. What type and dose of magnesium are you taking? Does it give you an elemental figure? I ask as some are very absorbant and do not combine well with others - regardless if they come in a capsule with other minerals.


#26 gail

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Posted 06 April 2019 - 08:56 AM

Hello Anon,

Thanks for your update, always appreciated. There is improvement, a good sign.

As the others said, do not overdo it, as this could bring back the symptoms for a few days.

Looking forward to another update.

#27 Anon1990

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Posted 02 May 2019 - 04:31 AM

Wasn't expecting to write again so soon - but here I am. Seemed to have had a breakthrough of sorts, the last week I have felt a lot better. It almost feels as if the constant low-grade hangover I had just left. This would have been around 4 months since the last dose of Cymbalta. My head feels clearer, I've started having more vivid dreams (something I'd never really reflected on as being potentially affected), I've had inklings of 'being myself' again, rather than the pained zombie I've been at times. Was it just the passage of time? The only other things I've recently changed were adding a magnesium/calclium/Vit D (all in one) supp before bed and a folate supp in the morning.

 

My supp routine is now:

 

AM: NAC, Fish Oil, L-methlylfolate, Stress & Anxiety Supp (NutriVital, containing Ashwagandha etc) , SAM-E.

PM: Ma/Ca/Vit D supp. 

 

It's quite a bit to take (and costs a bit), but compared to taking anti-depressants I'm much happier with this route. 

 

Fingers crossed the gradual improvements continue. Hang in there for all those suffering.

Well that up period quickly gave way. Had a pretty bad period, even involving suicidal thoughts. Had some other stressors going on and had a weekend away with some buddies (drank a lot) and anxiety/depression went through the roof. It hindsight, I'd been going backwards for a few weeks before that weekend away. Back on valdoxan, feel more stable now. Trying to put one foot in front of the other - five months off now. Looking forward to saying half a year off soon. A. 


#28 fishinghat

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Posted 02 May 2019 - 08:20 AM

Hang in there anon. We are with you.

Be careful with the valdoxan, it is not legal in the USA because of the high risk for liver damage. Be sure and get a liver function test done every 6 months while on it.
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#29 invalidusername

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Posted 02 May 2019 - 03:41 PM

Sorry to hear of you backwards slide... thoughts are with you.

 

Valdoxan hasn't been mentioned for some time. Not aware that it was still a popular drug of choice being that it works in very different ways to ssri/snri. Ridiculously short half life too... but if it works for Anon, then so be it. Just be careful as Hat says...


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#30 Anon1990

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Posted 11 August 2019 - 05:42 AM

Sorry to hear of you backwards slide... thoughts are with you.

 

Valdoxan hasn't been mentioned for some time. Not aware that it was still a popular drug of choice being that it works in very different ways to ssri/snri. Ridiculously short half life too... but if it works for Anon, then so be it. Just be careful as Hat says...

Hi. Another few months onwards. Now around 8 months off this drug. I'm still suffering from what I would call a protracted withdrawal. Like others suffering, I feel like a shell of myself. My genitals are numb. This is causing me the most distress. I can't remember the last time I felt genuine arousal or a hard erection since coming off this drug? Is there hope of improvement or should I even go back on it to return to somewhat of a functional sex life? I feel scared for the future. None of the reading I'm doing on the subject is giving me any confidence. I wish I had never set eyes on this drug and I'm so angry that the medical professionals I trusted let this happen to me. 





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