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Aussies - Report Your Cymbalta Experience To The Tga


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#1 ShannaB

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    I have survived Cymbalta. I joined while I was withdrawing but was too sick to post. I want to help others who are going through the same thing and raise awareness amongst prescribers and patients about what this drug can do.

Posted 05 May 2012 - 10:45 PM

Hi everyone,

As of yesterday I have been off Cymbalta for six weeks. I have been through HELL. I feel lucky to be alive - the physical symptoms didn't kill me, but the potential for self-harm and suicide when coming off this drug is huge.

I don't want anyone else to go through what I've been through. I thought, "Who can I tell that can actually do something about this?" So after looking around and making some enquiries, I have discovered that the TGA has an "Australian Adverse Drug Reaction Reporting System" where members of the public can enter adverse reactions to medications. Aussies, I encourage you to go to https://www.ebs.tga....sf?OpenDatabase and make a report.

While I'm here, I'd like to say thank you to everyone who has posted in these forums. It helped me hold onto hope so much. I tried to write some posts while I was sick but I couldn't manage it, so here's a bit about what happened to me.

I was diagnosed with endogenous depression in 2002 when I was 22 years old and have been on anti-depressants (SSRIs) for the last 10 years. I switched to Cymbalta in September 2012 to assist with anxiety that was coming about as a result of PTSD (work-related) combined with workplace bullying.

I started out on 60mg but dropped to 30mg fairly soon after starting on it as I had unpleasant side effects including dizziness, momentary loss of balance and weight gain. The withdrawal symptoms during the 'drop' were intense, particularly the suicidal thoughts which developed into suicidal ideation at one stage, but it only lasted four days and I was still able to function reasonably well in polite society.

I decided to stop taking Cymbalta completely on 24/03/12 after I realised it was damaging my marriage. Things had been going downhill for ages but finally I forced a confrontation with my husband who said I was like "a zombie" sine I went on Cymbalta and he didn't know who I was anymore. After calling him an insensitive a***hole, I had a bit of a think and thought he might be right.

My GP said that since I was on the lowest available dose it would be ok to stop taking it without tapering. I also felt mentally in control - very calm (Zombie Zen??) and well supported by my GP and my psychologist.

It absolutely wasn't ok. I was expecting about four days of trauma (as per the drop from 60mg to 30mg) and was prepared for that, but this was by far the worst thing that I have ever experienced and it sure did not stop after four days.

Physical symptoms I suffered within the first week included:
- Severe fatigue
- Electrical 'zaps' in head which went through my whole body
- 'Whooshing' feeling in my head
- Loss of balance
- Nausea/vomiting
- Diarrhoea
- Severe headache
- Sensitivity to light, sound and smell
- Visual disturbances (including mild hallucinations I think)
- Trembling in limbs and body (which turned into something almost like a 'fit' at one stage)
- Sweats
- Muscle pain/fatigue/twitching
- Feeling like there were bugs crawling all over my skin
- Constant crying
- Short term memory loss
- Inability to concentrate
- Fogginess/confusion

Mental symptoms included:
- EXTREME emotional reactions / mood swings
- Mental 'noise'
- Severe depression/anxiety
- Fear that I was dying
- Fear of medical intervention (paranoia?? but also a real fear that they'd make me take more of this stuff or other medications that were just as bad)
- Suicidal thoughts (which I managed to stop from developing into ideation or planning because I was expecting these thoughts to occur and was ready for them, despite being so very unwell)

Most of the physical symptoms were occurring all at the same time and were extremely debilitating. Days 1 and 2 were bearable, Day 3 I went to work but was very ill by the end of the day, and by Day 4 I was well into the worst of it and could hardly function. I was barely able to move, I could not prepare food (for a period of 24 hours I was unable to keep anything down anyway). The mental symptoms came and went but were pretty constant. My mental state was BLACK - I felt so alone and frightened. Perhaps the worst thing was the terror that I was dying, as it just seemed to get worse and worse with no end in sight.

On Day 5 I was desperate as I was still getting worse so I sought help from my GP. I drove myself the few blocks to the surgery but probably shouldn't have. I could hardly see, I felt so SICK, I was crying constantly, and I fell apart when I got into the doctor's surgery. I had sweat pouring off me and I started to have a sort of fit where I couldn't stop shaking. My GP said it was the most severe Cymbalta withdrawal reaction she has seen and immediately put me under observation with a practice nurse for 3 hours (I think she was assessing whether to hospitalise me or not). The obs were ok (apart from high blood pressure, which settled down once I found out that my body didn't actually seem to be dying even though it felt that way). She decided to treat the most severe treatable symptom (the nausea) with Maxolon. I had an injection at about midday and went back for another at 5pm. I still had nausea but the vomiting stopped. She said there wasn't much else we could do for the symptoms except treat the treatable ones to make me more comfortable and I just had to ride it out. I wasn't able to drive so I had to call a friend to come and get me.

The lowest point came on Day 6 when I was unable to move the whole day except for short trips to the toilet. I had suicidal thoughts. I had murderous thoughts. I especially wanted to kill my husband who seemed to have absolutely no comprehension of what I was going through and treated me like I was bunging it on. Except that I was too weak to kill him. When he got home from work that day I somehow managed to communicate to him that I was in seriously bad shape, and I think he finally had some sort of revelation that I wasn't making it all up, and he has been the picture of attentiveness ever since.

On Day 7 I finally turned a corner. I was still barely able to function, but something changed, I felt like I wasn't getting worse. (This could have been a mental shift because of my husband now being supportive.) By Day 9 I managed to stay upright for several hours for a family dinner, and on Day 10 I went back to work although I was still very weak, nauseous, trembling, extremely emotional, and the 'head zaps' continued (thank goodness for an understanding employer and supportive colleagues)!!

The symptoms have gradually gradually settled down over the last four weeks except that I have developed disturbed sleep patterns, intense dreams, and a feeling that I am only getting a series of 'cat naps' at night (although I think our cat sleeps more solidly than I do). This is ongoing, so I'm pretty tired. I also found that I became very 'literal' during the recovery period - I did not understand jokes, irony, sarcasm... I just took everything very literally and got very confused as a result! I think this is starting to settle down too, my sense of humour is returning. ; )

I was still experiencing the head zaps a few days ago but it finally seems to have stopped. I can drink coffee and alcohol again (only in small doses but that's a good thing)! I feel pretty deranged and cry every day but maybe that's just what I'm actually like (I seem to recall being pretty short-tempered, emotional, willful and bossy in my pre-drug days so I guess that's something I'll just have to learn to manage). But I feel like I'm going to be better without medication. I feel cleaner, or lighter, or something like that. I feel like there is hope that I am going to be okay (in fact, that I AM okay).

Last week I went camping and did a 20-kilometre hike in the bush... it was tough, but I did it and I'm OK!!!!!

IF YOU'RE OUT THERE AND GOING THROUGH THIS, HANG ON. YOU ARE NOT ALONE. WHAT IS HAPPENING TO YOU IS REAL, BUT IT IS NOT WHO YOU ARE.

My psychologist once said to me that I should think of myself as being like the sky. The sky has lots of different weather events happen in it - cloudiness, sunniness, mild storms, fierce storms, rain, breeze, wind. But the sky is not the weather - it is still the sky. It helped me to think of the Cymbalta withdrawal symptoms as a cyclone ripping through my body - it was horrible, but it was still just a weather event. We all have weather events in our lives, good and bad, but they do pass, and then we realise that the weather event is not who we are - we are still the sky.

"If you are going through hell, keep going." - Winston Churchill

"When you reach the end of your rope, tie a knot in it and hang on." - Thomas Jefferson

Keep yourself safe, stay hydrated, eat nutritious food, and BE KIND TO YOURSELF. You'll be right, mate.

Shanna B (Queensland)

#2 Kylie

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Posted 09 May 2012 - 02:27 AM

Hi there ShannaB,

I just want to say thank you for your post. Makes me feel alot better. Cheers matey.

Kylie
(Brisbane)

#3 ShannaB

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    I have survived Cymbalta. I joined while I was withdrawing but was too sick to post. I want to help others who are going through the same thing and raise awareness amongst prescribers and patients about what this drug can do.

Posted 12 May 2012 - 05:14 PM

No worries Kylie, I'm glad my post helped. If you're going through this, hang on!!!

#4 simmo

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Posted 17 May 2012 - 10:25 AM

Hi Shanna

Thanks for your post. I thought I just had a virus, until I realised I hadn't had Cymbalta for just over a week. I was originally prescribed Cymbalta 60mg for depression, due to PCOS. I didn't "twig" because I am also on pain patches for chronic osteoarthritis. My symptoms are as below
[*]Vertigo
[*]Headache
[*]Body aches all over
[*]"Crawling skin"
[*]Exhaustion
[*]Sleeplessness
[*]Nausea
[*]Vomiting (started last night)
[*]Forgetting what I'm trying to say

Having always been a size 18-20, in the last year I have gone up to a 24-26, while no change to my diet (except for the increase in Coke cravings). I put on 20kgs!!! As I mentioned earlier, I have been put on pain patches and just been the crawling skin down to this.

Thanks for starting this thread. I know now that there are other people out there like me!!

Cheers, Gina from Perth

#5 kzap

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Posted 17 May 2012 - 10:39 AM

Hi simmo

Welcome to the forum. YOU ARE NOT ALONE!!! I think you will find this to be the Best thing to help you cope and make it through the days ahead. At least, I have found it most helpful to share my w/d experience with people that understand what I'm going through. Any way, everybody is here for you. Just keep reading and writing and you will get through this nightmare.

May GOD Bless you and keep you safe. :rolleyes:

#6 ShannaB

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    I have survived Cymbalta. I joined while I was withdrawing but was too sick to post. I want to help others who are going through the same thing and raise awareness amongst prescribers and patients about what this drug can do.

Posted 17 May 2012 - 05:39 PM

Hi Simmo, I echo what kzap said - you're not alone in this. Hang on, and if it gets really bad seek help. xo

#7 hcar1919

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Posted 27 May 2012 - 08:41 AM

Thanks ShannaB for being so honest! I'm on Day 10 of my withdrawal and this is the second time I've tried to come off them. I manage to wean off but then I get so ANGRY it scares me. The doctor told me that this was not a symptom of the withdrawal, rather a symptom of me and I had to go back on them.
I've been back in them for 6 months but I've noticed it doesnt work as well and I get awful side effects - hair falling out, sweating and extreme tiredness. I hope I can get through the brain zaps, the feelings of sadness and worthlessness and most of the anger and meet my real self again! I was going to call the doctor and get a new script tomorrow but thank God for you all - I know I'm not alone! Thanks being so honest and giving me hope 😊

#8 kzap

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Posted 27 May 2012 - 09:54 AM

Hi hcar1919

Welcome to the Forum. I believe you have found the right place for support and knowledge about cymbalta .Personally, I think your Dr is wrong about your issue with anger. There is plenty documentation right here abput the anger problem. Have no idea why we explode like we do. It is not just our personality! I bet you Dr really doesn't have a clue about the actual withdrawal symptoms form cymbalta unless they have been on it themselves and tried to withdraw from it. I am a retired Psychiatric nurse and truthfully I would think people in withdrawal would be exagerating about this craziness , if I weren't going through it myself. THIS MESS IS JUST CRAZY! Don't let anybody try to put a guilt trip on you about any of these symptoms. They DON'T KNOW.
They are not the ones suffering.

I am on day16 with NO cymbalta. Yesterday was the first day I could actully think clearly or function at all. It felt so good not to wake up with brain zaps,brain fog, dizziness, nausea , severe muscle aches and pains among the other numerous symptoms. I actually felt good about myself. I even drove for the first time since April 12th.

THERE IS HOPE. YOU REALLY WILL FEEL BETTER ! May God Bless you and keep you safe. Please keep us posted on your cymbalta adventure. We CARE! :rolleyes:

#9 ShannaB

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Posted 28 May 2012 - 04:36 AM

The anger is indeed terrifying. I wrote quite a long post about it on a thread about 10 days ago: https://www.cymbalta...to-hate-myself/

I am pleased to say that, revisiting that post, I can honestly say that the anger issues seem to be settling down. Now I'm battling depression and hopelessness, but that's another story altogether (and perhaps a more manageable one than the anger because I at least I'm not making life too horrible for anyone else)!

It's very hard to tell if this is part of the withdrawal, or adjusting to life without medication, or a fundamental part of who I truly am, or just a reaction to a really stressful time (my work situation is currently very stressful, very uncertain, and EVERYONE there is starting to go a bit unhinged). I guess all I can do is keep doing my best (and remember that my best is going to be different on different days - some days are more manageable than others). I think that's all any of us can do, is just keep doing our best and be kind to ourselves!!!

#10 ShannaB

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Posted 28 May 2012 - 04:42 AM

kzap - I know what you mean about how it's hard to believe it until you've experienced it yourself... I have worked in emergency services and mental health, and I think (sadly) I would have been very cynical about this sort of withdrawal if I had been confronted with it then. After all... this is not an "addictive" drug, is it?!?! I would have just assumed the person was raving bats**t crazy!! (And I tell you what, I felt raving bats**t crazy coming off this stuff and I'm pretty sure I was, but like I said, it was just a weather event. I guess a positive outcome is that this has given me more compassion and understanding for people who are going through severe episodes.)



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