1636 replies to this topic

[ForLyla]

I'm at the end of my rope. It's been 2 years of hell for me, the last 5 months being the worst and the last week I've been in the worst wave I've ever had. I took benzos and cymbalta for a chronic pain condition starting in October 2016. I got off benzos quickly a few months later and started feeling better after 15 months off. I was taking 30mg of cymbalta and made the genius move to start tapering in July at 10% a month. I felt decent while tapering until October and all hell has broken loose since. Blurred vision, heart pounding, nausea, insane anxiety, dizziness, constant migraines and headaches, itchy dry skin, cognitive issues etc. I'm currently at 22.5mg which I've been holding since October. I'm just not stabilizing. I've been going to a compound pharma for my prescription. I think I've felt worse since I've been counting beads and weighing my pills. Where do I go from here? I feel like there are no options left. If I cold turkey I'll die. If I stay where I'm at I'll stay miserable. If I go back up people tell me I'll get worse. If I wean I'm dead. I can't take feeling worse than I already do. So what?   

[invalidusername]

ForLyla - first up a welcome from me, the acting "night shift" for the forum!

 

Second, you are not alone - never alone - in feeling this way. If it helps just to kick things off, I too came off Cymbalta 6 months ago, and between one thing and another, I am sick and tired of all the damn side effects, withdrawals and so on. It sucks, really it does, but we can do something. We need to get you out of your med head!

 

So you are now 4-5 months on 22.5mg, and you absolutely did the right thing in a slow ween at 10%. Whilst some here have gone slower, this is a cautious pace and should yield good results in most cases. However, all the issues that you are facing can be combated with other non-medicinal means - and I am not just talking the usual go for a walk, exercise 30 mins 3 times a week. No no. We are talking suntheanine, apple cider vinegar, omega 3, tyrosine and much more. Can I assume that you haven't ventured into any such supplements yet?

 

Make no mistake that all of what you have described is textbook Cymbalta withdrawal. All of them. Search the site and you will see 100's of cases. What I would suggest is that we start getting the physical symptoms under some control as these can easily affect the psychological symptoms (e.g. feeling dizzy and nauseous can easily make one anxious). First up I would suggest getting some Omega 3, and this needs to have a high DHA/EPA - a combined 2000-3000mg to see results. Note that this will often require taking 2 or 3 capsules which is just fine. I would also suggest Suntheanine and/or KSM-66 Ashwagandha for the anxiety. Suntheanine is a pure form of l-theanine. The Suntheanine is recommended as it uses the best process in manufacturing. We have many members who have switched between the two only to find a huge difference.

 

I hope this gets you started - and I am sure other members will come in on this soon to help.

 

Meanwhile, if you feel you need anyone to talk to if and when you get really low, just post here or drop a PM to me. These are tough times, and that is why we are all here for each other.

 

IUN

[ForLyla]

Thank you for your response. I do take Omegas but not a big dose. I'm not sure about cymbalta but in the benzo world taking supplements was a big no no and made me feel ten times worse. What do you think I should do about my taper? Should I continue my taper again and get off these damm meds or should I try going back up? 

[invalidusername]

If you have stuck it out at the same dose for this amount of time, one would indeed have expected to some stabalisation, however, we have seen people drop a bead a week (in extreme circumstances) so whilst increasing to a previous dose and going slower might be a way forward, I would consider looking elsewhere for the recovery. Our man in the know, FishingHat, will undoubtedly have some suggestions, and will be in touch tomorrow.

 

I would certainly try a larger dose of Omega 3 as low doses simply will not come close to alleviating the symptoms. You may even find that it helps with symptoms other than the dizziness as it promotes re-growth of the neurological areas once functional in the pre-cymbalta days. Another approach is the medicinal route by perhaps introducing Prozac or similar to bridge the difficulty in weening, and then once cross-tapered, it will be a cakewalk coming off the Prozac. But this will of course require you to wait out the 8 weeks or so to wait for the effects of the new med to take effect prior to continuing the taper.

 

Continuing a taper (without another supporting drug) with such effects seems contraindicated, but even with a sensitivity as much as yours, there will be ways forward. I am trying to think of members who have had similar issues.. VinPin has had a long haul - there are others, but it is almost 4am in the UK and my head is getting more and more useless by the minute!

 

Again, I hope this is something to consider. We'll see what others come back with in the morning and we'll have more options

[ForLyla]

Ok thank you so much. I'm really looking forward to their suggestions. I desperately need advice. 

[gail]

Good morning ForLyla,

Welcome to the forum. My thinking goes on the cross taper side. Zoloft or Prozac are often used for this condition. They have long half lives and easier to get off.

You must be familiar with this, if not, let us know.

IUN has suggested good supplements. They do help with a ?ot of symptoms.

Yep, cross tapering is your best bet. We are here for you.

[fishinghat]

Welcome Forlyla

Iun Said "whilst increasing to a previous dose and going slower might be a way forward, I would consider looking elsewhere for the recovery."

I would say both. If you are at 22.5 mg go back up to say 23 mg and get some relief. The improvement usually comes within 49 hours. If that is not enough then you may need to go to 24 mg. This will give you some fast relief and buy you some time. Most drs prescribe benzos for the symptoms but considering you are already off them I would recommend talking to your dr about hydroxyzine and/or clonidine. Neither are addictive nor do they have withdrawal. Like all meds they work for some and not others. Cross tapering to another antidepressant like Zoloft, Prozac or Lexapro are certainly options but you will still have to deal with a withdrawal later. Less withdrawal for sure. In addition it will take a new antidepressant anywhere from 4 to 8 weeks to kick in and that can be a long time when you are suffering.

You have had good suggestions already on the supplements but I would also recommend a good antioxidant like vitamin C or N-acetylcysteine. In addition the KSM-66 Ashwagandha is a good option but there are some risks with it so do your homework first before jumping in.

I would also suggest you read the thread "Summary of Cymbalta Withdrawal" which is in the Medical support section. It is a summary of technical information as well as what members have tried including their successes and failures.

I would also suggest you only change one thing at a time. Of you make too many changes at one you will not know what is helping or hurting your withdrawal.

I am sure you will have a lot more questions so please feel free to come back anytime and we will help the best we can. You are not alone.

[ForLyla]

Thanks guys. I've never had such great support in this. So I do have a few concerns given my history. 

 

I'm now extremely sensitive to medications. I actually went on Cymbalta to deal with pain and stayed on it to help with my benzo withdrawals. I regret having stayed on it for 2 years before deciding to taper because now my cymbalta withdrawals are even more horrific than my benzo ones... or maybe I have a combo of the two. Anyway, what concerns me is going to yet another drug. Wouldn't I just be digging myself into a deeper hole by adding more medication to the mix? Seeing as it's been 5 months since my last taper, will I run the risk of making my withdrawal syndrome worse by updosing a little bit? And should I go low dose Prozac if I do?

 

I started taking strong fish oils today and a little bit of vitamin c. I find being in the sun to have calming effects as well but unfortunately I live in winter wonderland Canada so going outside isn't an option right now. 

[fishinghat]

"Anyway, what concerns me is going to yet another drug. Wouldn't I just be digging myself into a deeper hole by adding more medication to the mix? Seeing as it's been 5 months since my last taper, will I run the risk of making my withdrawal syndrome worse by updosing a little bit? And should I go low dose Prozac if I do?"

Good points. The idea would to go up a minimal amount, stabilize, and then taper at a much slower place. Going up normally brings a degree of relief. Going on a different can bring relief but there is a long time to kick in and still have a significant withdrawal later. Much of this is an individual decision as to what they are going through and what they feel comfortable in using to correct the situation as best of possible. Only you can and should make this decision. We are just here to offer our experience. We are here to support whatever decision you make.

My sympathy for living in cold Canada. lol

[ForLyla]

I went to my doctor today. I'm currently on 22.5mg and we decided to go up to 25mg for 30 days and see how I feel. Do you think it's a good idea?

[fishinghat]

Yes, it should only take a couple days to see a benefit. Remember how fast you were weaning earlier and when you stabilize you can once again start weaning at a slower pace, much slower. As IUN said earlier some members could only drop at one bead a day. Whatever it takes.

[ForLyla]

It's been 5 months since my last taper. Some people can't tell me why but they seem to think it's a terrible idea updosing a bit - that I'll feel worse if I do that. That you have to go back up within 3 weeks after tapering. Do they just not know?

[fishinghat]

They just are misinformed. Going back up in dose is a standard procedure that so many members have used on this site. Of all the people who have done this I am only aware of 2 that actually felt bad afterwards.

[invalidusername]

It even states this in the patient leaflet that comes with the medication. I would have done this myself, but as everyone here know, the doctor took my beads away for fear of more seizures. Most people find they hit your point at around 10mg, but you are clearly a little more sensitive. 

 

I do think bumping it up a little will be the best option short term.

[TiredMummy]

Hi Fort Layla

I can't comment on the time gap since your last taper, but I know that IUN, FH and Gail will be able to advise on that from their experience.

But I just wanted to send you a hug and a bit of hope. When I started tapering this horrible drug, I did so by bead counting but too fast. The guys here made great recommendations here to increase up a bit and stabilise then start reducing much, much more slowly (a bead a day or slower). When I still struggled with side effects, IuN and FH recommended the Suntheanine too and similar to advice above.

I want to tell you that since starting the Suntheanine a week ago, I now have minimum side effects and can't believe the difference. I was sceptical I think that it would really make such a difference as I was already taking high dose Omega 3. But it really has, and I am so grateful.

The support from everyone here is great and as is the knowledge that you are not alone, or going mad, or run out of options. Because there will be a way. Just hang in there, minute by minute if you have to.

It may take a while, and some experimentation, and as the guys say, a lot of patience, but you will get there and you are definitely not alone.

Take care and big hug x

[invalidusername]

Thank you for your kind words TM, and so beautifully put...

[lady2882Nancy]

Just wanted to add my bit as a fellow Canadian who is also missing the sun. 

I started taking 1000 IU Vitamin D3 tablets while withdrawing and continue to do so as we do not get near enough sunlight here.

While withdrawing I took 2 a day and now take 1 a day although when I start to feel depressed again I bump back up to 2 a day. 

Just want to mention that I was one that also took Cymbalta for pain and had a terrible time getting off due to how med sensitive I became.

I also used Zoloft to help deal with the side effects of coming off and strongly recommend L-theanine (suntheanine - helps with headaches and suicidal feelings), Omega 3 (high EPA formula helps calm brain and improve cognitive function) and trying hydroxyzine (helps with the itchy skin and anxiety).

I do not answer much anymore but keep up with most of the topics and just felt the Vitamin D3 was information others from warmer climates would not know about.

All the best to you.

[ForLyla]

Thanks so much guys. IUN, FH and Gail - did you have significant gaps in up-dosing after your tapers, as in months later or did you go back up right away? 

 

My case may be a little different because I was also going through benzo withdrawal and I'm not sure how much of this is benzo or cymbalta withdrawal syndrome. I think it's probably a combo of both. In the benzo world, I know that going back on benzos and up-dosing are bad ideas. I'm supposed to take my first up-dose tomorrow and I'm really nervous about it. 

 

I took suntheanine for the first time a couple of hours ago. It seems to give me the same feeling as taking high dose niacin without the flushing. I definitely feel tired from it which will be nice before bedtime. I'm so so on the results so far but perhaps I need to give it a better trial and see how I feel after it wears off before I judge. 

[fishinghat]

" I know that going back on benzos and up-dosing are bad ideas."

Correct, but benzos are an oddity. I have updosed a few times during my Cymbalta withdrawal with no issues. It is tough to do Cymbalta withdrawal let alone the same time as benzo withdrawal. Hang in there.

[gail]

LadyNancy,

Thank you for your input, it's very valuable for us, specially Canadians in our cold country.

I also have started D3, I will double when depression starts. Thanks for the cue.

Looks as though I will purchase sun Theanine, so many good reports in the last days.

Thank you all.

[invalidusername]

Suntheanine also makes me tired when taken. I often get anxiety in the morning so taking it when you are trying to wake up is not the easiest thing to do.

 

Can't say I have looked into Vitamin D - but being a night owl I really should. Is there something specific about D3 and depression that means it is superior to just vitamin D?

 

ForLyla - just re-reading all this makes me see just how close our paths are on this - although I have more meds in the mix. I came off Cymbalta 5 months ago having had stomach issues. Then citalopram for a month... then Lexapro (with Pregabalin which also gave me issues). The lexapro then introduced fatigue and shakes so I have now dropped a dose of this and of course, got withdrawal. 

 

I too have been ill since last August with one thing or another. Days can be a real struggle and it is hard to see an end.

[fishinghat]

I know I have said this before but supplementing with D3 should ONLY be done after a blood test to check current levels. Vitamin D3 toxicity has increased considerable in recent years with the popularity of this supplement. If the supplement is taken then vitamin D3 levels should be checked every 6 months.

"D3 - May cause constipation, nausea and vomiting as these are symptoms of an allergic reaction that require immediate medical attention. If taking vit d3 you should have your calcium and D3 levels checked each 6 months. Long term use can cause hypercalcemia (too high calcium levels and low magnesium levels (hypomagnesaemia)."

[invalidusername]

You are right... regardless of being a night owl, the sun being on a low zenith and being a vegetarian, I have been this way for many years, so I can sustain it usually. One thing at a time....

[ForLyla]

Vitamin d supplements is a known bad one for benzo withdrawals. I can tolerate about 200 iu's before it sets me off. I didn't have a good reaction to the suntheanine, although maybe I'll try reducing it to half the dose and try again. I think my nervous system is extremely sensitive so that's why I'm worried about updosing. I need to stay in a stable state for a long time but I'm willing to try anything because I'm at the end of my rope with all this. 

[invalidusername]

I really feel for you Lyla. Of course you have had it with all the symptoms.

 

Very odd about the Suntheanine, what dose did you take? The Suntheanine is a well standardised form of l-theanine and has the potential to be greater in potency than the regular stuff, so whilst 100-200mg is the recommended dose, it may be that you enjoy better luck on a smaller dose. 

 

Does our lovely new friend here remind anyone of Oz? They seem to share a lot of similar traits of intolerance and wot not.

[lady2882Nancy]

Hey Fishinghat and others

I already have osteoporosis and was put on calcium and you need D3 to absorb the calcium which is how I discovered it helped. 

2000 IU of D3 is pretty standard according to my doctor but if I start getting headaches then I know to cut back to the 1000 IU. Here in Canada we do not get any D3 in the winter from the sun which is the only other way to get it so we have to do something to save the bones.

[fishinghat]

No problem LadyNancy. I just wanted to be sure that people knew to keep a close watch on their d3, calcium and magnesium if taking the supplement.

[Vinpin]

Hi ForLyla,

 

I'm going through Cymbalta w/d now - and just wanted to offer some support to you, on a few fronts.

 

With the help of all of the members who posted on this site and to my thread (most notably, FishingHat, whose advice has been invaluable), I have successfully weaned down from 60mg 15 months ago, to <1mg (3 beads) currently. I am still battling it .... and for sure, its been tough circumstances, having been on Cymbalta for 12 years in all. A cross-taper is an option for me, but I'm trying to avoid because I want my body and mind to experience what its like to not be on any SSRis/SNRI's. I am doing it .... and you will, too.

 

FishingHat is completely correct about the "updosing", if need be. It is important to stabilize when your body tells you it isn't able to cope. It is the "one step back, then two steps forward" phenomena - and there's nothing wrong with it. I had to go back up to 2 beads twice daily this week, because of a mistake I made putting beads in clear gelatin capsules instead of enteric-coated acid resistant capsules (please don't make the same mistake later on if/when you divvy up tiny bead amounts into twice or thrice daily dosages - yes, that will be recommended later in your weaning by FishingHat)

 

Also, if you haven't gone for a check-up in the past year, please go. I was severely deficient in Vitamin D3 (which you are already alluding to) and B12. Both affect the brain/mood/nervous system .... so its extremely important to be up to snuff in those areas, otherwise your Cymbalta/Benzo w/d symptoms will unnecessarily be augmented/compounded.

 

I'm taking the Suntheanine (100mg twice daily), which Fishing Hat recently recommended to me. It might be helping -  surely, it isn't hurting. It may have helped me through my rough patch earlier this week.

 

Above all - diet/sleep/exercise are all paramount. Eating well helps with healthy hepatic function (liver), and we should treat our liver well since its working overtime breaking down the medicines we take. I've exercised too hard at times - light exercise is better than going "all out". 

 

And - please don't hard on yourself. I'm learning to expect less from myself during this time. Rely on loved ones to support you through this rough time. They love you - they just need to know what you need from them ..... so don't be afraid to ask.

 

Hope this helps - very best of luck to you,

 

-VinPin

[ForLyla]

Thank you Vinpin for your support! 

 

So here's the plan of action and I'd like to know what you guys think.

 

I'm going up from 22.5mg to 25mg today. I'm going to stick it out for a bit and see if there are any changes. If I feel I'm getting worse I'm going to start slowly tapering again, maybe 1 or 2 beads a week until I get off this poison. Ideally, I'd love to be off all meds but I'm just too sick and will do whatever it takes to feel better. 

 

I want to play this very cautiously. I have a newborn and I need to be functioning. How long should I try going back up to 25mg for? If I feel worse should I hop back down to 22.5?

 

I still feel really tired from my first dose of suntheanine yesterday morning. Is that normal?

[fishinghat]

"How long should I try going back up to 25mg for? If I feel worse should I hop back down to 22.5?"

You will know in 2 or 3 days. If worse then a drop back to 22.5 may or may not make a difference. It is hard to say as most of our members have not had any issues with going up.

That must have been too high a dose for you on the Suntheanine. The fatigue should pass soon. Next time try about half as much.