9 replies to this topic

[pinckaers]

Hello,

 

Like everyone else I have had an awful time of it.  I was on 60mg for about 4 years. 

 

I tapered slowly under supervision of psychiatrist over about 6-8 weeks (I can’t remember exactly) which involved opening the capsules and measuring out the beads.  Symptoms were awful.  Most of them have subsided now but two remain, one of which is getting worse.

 

I’ve now been off Cymbalta completely for about 2 months and am suffering from severe insomnia, which is getting worse.  I wake up after about 30-60 minutes and spend most of the night awake - usually getting about 2-3 hours sleep total.  It’s my legs.   I am incredibly tired (so I have trouble doing anything useful like reading) but just can’t relax my legs enough to fall asleep - the muscles just continually tighten up and I cannot relax them.  I have tried everything: stretching, supplements (magnesium etc), exercise, no exercise, caffeine during the day, no caffeine during the day. I have never had insomnia before in my life (I am now 48).

 

The only thing that has given any relief is Diazepam, but I am trying very hard not to take it because that will lead to a whole other list of problems.

 

The irony is that the reason I got off Cymbalta was that it caused hypersomnia.  After spending a lot of time and money on medical specialists having sleep studies etc, a pharmacist suggested to me that hypersomnia is a common side effect of Cymbalta. Low and behold, it was the cause of my hypersomnia.  I was already resenting Cymbalta for the emotional blunting it caused but I found the hypersomnia completely debilitating.

 

The other residual side effect of withdrawal is irritability.  I feel like I’ve had a personality change, I pray not permanent.  I find myself becoming frustrated and snapping about my children.  I was never like this before.

 

I am at my wits end.  It is now 2:10 am and I am trawling through this forum looking for help.  Reading everyone else’s stories though is just making me more depressed.  God alone knows when if every I will be free of this cursed drug.  Has my brain been permanently damaged?  Is this my life now?

 

 

 

 

[invalidusername]

Hi Pinckaers and welcome to the forum,

 

First up 6-8 weeks was a VERY short withdrawal for a 4 year stint on this stuff. This will have undoubtedly caused this issue.

 

When you say that you are tensing your legs, is it simply that, or is it a case of restless legs? Do you have a compulsion to move them as well? Given that you have irritability, it might add up. And of course it is making you more depressed.

 

What you have going on here is your brain chemistry trying to deal with the down-dosing of norepinephrine, which is the precursor to your adrenaline. This will be playing havoc with your system at the moment - yes - even 2 months on. Mine didn't start until around 10 weeks after, and then I had 3 months of associated issues... and I was only on Cymbalta for 10 weeks.

 

I would avoid unnecessary exercise as this will stimulate more as well as build up lactic acid in the muscles and your body is so confused right now that it will not know how to deal with it. You need to keep your routine normal such that your brain can balance out knowing what is right for you.

 

If a benzo (diazepam) is giving some relief, there is no harm on using this short term - upto 3 months. You shouldn't have any withdrawal issues with this. The alternative is to introduce a small dose of the cymbalta to give you a bit of relief - but 2 months is some time to be off. Usually after a month passes it is not considered a great idea to replenish any of the dose unless necessary, but if you are suffering that much, then a few beads might be your saving grace.

 

I will be interested to hear what my dear friend Fishing Hat has to say, but I hope this gets you started.

 

IUN

[fishinghat]

WOW. 6 to 8 weeks!! Your dr must hate you lol. We normally suggest a 6 month or so weaning period.

 

The diazepam is addictive as you probably know. the research/manufacturer say that the longer you are on it after 4 weeks the higher the risk of addiction. There are ways to get off of it with little problems if you are very very patient. 

 

There are just so many things that may help or hurt your withdrawal that it is impossible to cover them on this post. We have assembled an ebook of things that members have tried and there comments both good and bad. It also contains a lot of medical research on related topics, drug interactions, diet, exercise and things to avoid as well. It is the first post in the Medical Support section. Please feel free to ask any questions at any time. We are here for you. We understand.

 

One side note. You might consider using about a tablespoon of wine before bed. Wine is a great muscle relaxer. My wife has dealt with these types of issues for years and the wine works well for her. I know of others on this site that have also had success with this method. CAUTION - Do not drink a lot of alcohol as this can make withdrawal much worse quick.

[invalidusername]

You might consider using about a tablespoon of wine before bed. Wine is a great muscle relaxer. My wife has dealt with these types of issues for years and the wine works well for her. I know of others on this site that have also had success with this method. CAUTION - Do not drink a lot of alcohol as this can make withdrawal much worse quick.

 

Russian medical staff often recommend this as well... but I could never seeing it happening over here in the UK - not with the amount of tax they put on the stuff. If we then had to supply it under the NHS all hell would break loose!!

[pinckaers]

Thanks everyone for the replies.  

 

6-8 weeks was the extended taper after I had such a bad reaction initially.  My psychiatrist seemed utterly unaware of the risk that I might have any reaction at all.  He told me he had never had any patients have any reaction to withdrawal from Cymbalta.  He originally had me on a 2 week taper.  He said that he puts a lot of patients on Cymbalta partly because there are very few withdrawal issues.  To say I was exasperated by this would be an understatement.  I pointed out that 5 minutes on Google would well and truly vindicate my experience.  In a fit of frustration I even tried cold turkey for 3 days to “rip the band-aid off”, which I very quickly abandoned.  Cutting open the capsules and reducing the beads was my idea (after reading on the internet) which my Doctor approved.

 

I am trying to stay off booze to help with the recurrence of my condition (chronic depression). I am not an alcoholic but I find it very difficult to moderate alcohol consumption.  One glass turns into 3 pretty quickly (which is enough to have a residual impact on my mood the next day) but I can easily stay at zero.  So I am concerned about taking a bit of wine.

 

Also going for a run is part of my regime to maintain fitness.  If my fitness drops I seem to fall into a hole pretty quickly.

 

In other words, after the hell of Cymbalta (I was on Paroxetine for years before that and was taken off it by my Doctor because he said it is notorious for bad withdrawal, but this has been so much worse than coming off Paroxetine), I want to manage my condition drug-free.  Unfortunately I think going tee-total and regular exercise are both essential for that.

 

Yes I do have the desire to move my legs (really just to engage my muscles) and have to keep standing up and walking around, but I don’t seem to have any of the paresthesia that people talk about so I had discounted RLS.  It’s in the muscles not the skin.

 

Has anyone tried Melatonin for sleep?

[frog]

Hi pinckaers

Welcome to the forum. I'll leave the advice to FH and IUN as I did not experience muscle tightness post-Cymbalta thankfully (instead I got other "fun" symptoms). 

 

It's fascinating though to learn that hypersomnia is a side effect of Cymbalta. I had never known that though I suspected it. I also slept CONSTANTLY while on it. I could sleep for 12 hours and still need a nap during the day. I've also developed insomnia post-Cymbalta. I think the insomnia is anxiety related for me? My brain can't seem to completely shut off on its own or something. I start to drift off and then BAM I'm awake again. I take 1 pill of Seroquel nightly to manage. Basically acts as a sedative to get over that 'hump'. Seroquel is a really nasty drug at higher doses but supposedly at the dose that I take it the only possible issue with getting off is rebound insomnia. For the moment it's worth it to be able to get some sleep. I can get 7-8 hours most nights especially if I practice decent sleep hygiene. I started out taking 2 pills nightly but after experimenting 1 does the trick just fine. Hoping that maybe once this pandemic is behind us I can try to come off completely. 

 

As for the irritability that is textbook Cymbalta withdrawal. Removing the Cymbalta throws your brain into an imbalance and that includes emotionally. Also not sleeping will tend to make anyone extra irritable. It should get better with time. I don't think this is the "new you" or anything like that. Hopefully your family is able to understand that it's not intentional.

[pinckaers]

Thanks Frog.  I’m sorry that you have had a similar experience vis-a-vis hypersomnia/insomnia but in a selfish way it’s refreshing to hear that I’m not the only one (and that I am not going mad), if that makes sense?  I suspect that the (2) doctors I have spoken to think that it’s all psychosomatic.  They seem quite incredulous at my reported history so it’s very reassuring to have found this forum and some vindication that what I’m experiencing is not all in my head.

[frog]

You're definitely not going crazy and it's not selfish to take comfort that you are not alone. Sorry to hear your doctors are being dismissive just because they haven't personally had a patient report to them that they struggled. Doctors just have a tendency to want to put everything into distinct boxes. I spent A LOT of time on this forum for many months because it was the only place where people understood what I was going through. 

 

I've also felt at times like I was being gaslit by doctors during this whole process, though I've also encountered people who were receptive and openminded about the possibility of intense withdrawal from such a complicated medication. But if you had seen me a year ago (3 months off Cymbalta) and compared it to now I think it would be impossible to say that it was "all in my head." Even now I still have anxiety issues that I still feel are improving and moving back closer to how I used to be before I ever went on this awful drug (I went on it for chronic pain not anxiety).

 

You're going to keep improving as times goes on and then you can educate your doctors about Cymbalta. Or you can tell them to kick rocks. Whichever one you prefer  

[fishinghat]

I am glad you mentioned the exercise. Significant exercise is an issue when suffering from the anxiety of withdrawal which Iing. The low dose seems to be groggy for a while in the morn thought was your issue. My bad. For those who suffer from depression during withdrawal it is much less of an issue.

 

Research has shown that low levels of melatonin (less than 0.7 mg) is good for inducing sleep but levels of over 1 mg can interfere with or even stop rem sleep, the deepest state of sleep. Doses over 1 mg can leave a person groggy in the morning. The low dose is best effective in the sublingual form according to the research, putting people to sleep quicker and with less residual grogginess. I have had good success with it myself. Be aware that there is some research out there that states it can make depression worse. I have not seen any posts that have reflected that from members.  

[invalidusername]

Hi pinckaers,

 

Frog is a great one for empathy - she really has the right words to say! 

 

Hat has got the melatonin covered - although I would extend on his advice in saying that I think he meant that melatonin taken in the right dose is unlikely to exacerbate depression, but higher doses do have the potential to make depression worse. I can recall a few members experiencing this, myself included. Stick to the recommended dose. More is definately not better in this case.

 

Regarding the alcohol, this is far more documented and will have a negative impact the following day with regards to depression. So try as best you can to minimise, or better yet, remove yourself from it. I respect that it can be difficult, but only right for us to point out the impact...

 

IUN