50 replies to this topic

[TWhil195]

Hi. Totally new here. Short version of my journey: started cymbalta 3 years ago for some post partum depression and daily headaches. Worked great for 2 years. The third year my neurologist increased my dose from 60 to 90 because I was getting brain zaps in the afternoons. Bad choice but I didn't know better at the time. Fast forward six months and I've gained 30lbs and also drained my adrenal glands from being on it so long.

I know in my heart I need to get off this stuff, my neurologist is clueless. He moved me from 90 to 60 with no mention of any potential withdrawal. That was four weeks ago. Since then I've done a ton of research in an effort not to give up and go back to 90.

Here is the question (ah.....finally): I am on four and a half weeks since dose down and still feeling flu like, headaches, full feeling head, dizzy, spontaneous crying. No brain zaps lately though. I didn't expect the symptoms to last this long for a dose down. Has anyone had symptoms last past the four week mark? My body is super sensitive so that may be part of it....

I think I just need someone to tell me I'm not crazy and that this will end (at which point I will dose down and do it again)

[fishinghat]

Well I can do that!!! You are not crazy and it will end.

 

Can I ask, are you on the brand name or on generic?

 

The first 3 or 4 weeks of withdrawal are the worse with some slow, and I mean slow improvements. By the 8th to 12th week usually see signs of good days followed by bad days but at least there is light at the end of the tunnel. Now that is the average. I have known people who actually quit cold turkey without a symptom. And others where the withdrawal last 6 months to over a year but these are rare. Research says between 30 to 80% of people do not experience withdrawal while other research shows that around 7% experience withdrawal of 6 months or more.

[FiveNotions]

Hi TW, welcome! Ditto to what FishingHat said ... nope, you're not crazy. But your doc is a jackass. No way should you have dropped by that big a dose all at once. That said, you can definitely get off this stuff, and we'll do our best to help you any way we can.

 

You made a huge drop from 90 down to 60 mg.... it put you into cold turkey withdrawal, which is the hard way to go. (I speak from experience.) Your brain isn't able to adjust that rapidly to that large a reduction in serotonin. Also, you indicated that your body is super sensitive ... it's no wonder you're feeling like you do.

 

I had all the symptoms you describe, plus the zaps and lots more. So, all in all, I'd say you're doing pretty darn well ... miserable, definitely, but not deathly ill. Bravo!

 

How about staying at the 60 mg until you stabilize, and then start bead counting the rest of the way down? (I'll let FH and TM and the others who used bead counting fill you in on the details.)

 

As for how long the symptoms can last, it varies by person ... my cold turkey approach resulted in hard withdrawal for 4-5 months, with the first 1-2 months spent pretty much in bed ... but I think I'm one of the extreme cases ... I'm 61, was on it for 7-8 years, was in lousy general physical condition, and have had other health issues. So, not exactly a prime specimen for an easy time getting of the poison. I had every single symptom you mentioned, and then some.

 

You're going to have a much easier time ... still difficult, but not horrid...

 

Are you taking any of the basic vitamins and supplements? Multi-vitamin, B complex, omega 3 and chelated magnesium seem to be what most / many of us here used .. and are using. Also, drink lots of water. Herb tea can also be good ... I drank Yogi detox by the gallon. Check out our "what are you feeling" and "nutritional support" forums for tons of info and suggestions.

 

Glad you found us, keep posting!

[TWhil195]

Thanks you so so much for the encouragement!
Fishinghat.....am on generic. Also, the neurologist put me on 150 mg wellbutrin because he said it would help with the dose down. After all my reading, I don't think that's correct....although it has thankfully given me a bump in energy.

FiveNotions I've seen a lot of posts on here where you have researched stuff. Any thoughts on the Wellbutrin/Cymbalta combo?

I'm so thankful to find a group of people who get what I'm going through and my fear of forever feeling like I'm dying from the flu! My poor husband is so supportive but he doesn't really get it.

I'm on supplements to help bring up my adrenal glands, so I'll have to look at what are in those and then add the ones suggested here. I have been taking lots of fish oil because it really does help with the brain zaps.

[fishinghat]

Five Notions has the most experience with the wellbutrin so I will leave that answer to him.

 

May I ask you how yoou know that you have '"rained your adrenal glands"?  Blood tests for adrenaline levels are notoriously inaccurate.  Have you been checked for pheocromocytoma? That is a tumor on the adrenal gland.

 

Most of the generic cymbalta capsules have from 3 to 7 pellets inside. I would suggest remove one pellet every day for 2 to 3 weeks (depending on how you feel) and 2 pellets the next 2 or 3 weeks, etc until done.  If things get too bad just hold at that level until things get better.

[FiveNotions]

TW, I was on the wellbutrin / Cymbalta combo for 7-8 years ... I'm still on the Wellbutrin, because my type of depression responds well to it ... it's a dopamine booster, sdri, not a serotonin booster, like the Cymbalta. My depression is the sort where I want to do things, but just don't have the motivation / energy ... no zip, no zing so to speak ...

 

Stated a bit more coherently, wellbutrin/Cymbalta is a dopamine / serotonin combined boost ... Wellbutrin is one of the few antidepressants that acts on dopamine. Most of the others act primarily on serotonin, with some affecting noradrenaline as well. (Cymbalta also affects noradrenaline to a certain extent, so technically it's an ssnri.)

 

The only reason I was put on Cymbalta was to glue me back together after I had an adverse reaction to the generic wellbutrin, bupropion, made by Teva. (and taken off the market last October.) It put me into a psychotic episode and landed me in the "snake farm."

 

The wellbutrin doesn't do anything to replace the serotonin that you've removed from your brain by quitting Cymbalta .. but yes, it will give you an energy boost.

 

Do think you still have depression? If so, do you think you want to be on an antidepressant, and does the Wellbutrin seem to help?

[TWhil195]

Oh, this is my second go around with adrenal fatigue syndrome. I have a really good doctor working with me on that. My cortisol levels this time around were sky high, which is what happens when you live in a place of stress (I'm a lawyer...don't hate me...), over exercise (two a day workouts not smart when you are not in shape to handle them), and have prolonged raised seratonin levels from an anti depressant.

But I will double check that my doctor looked at pheochomocytona and absolutely welcome the input!

[FiveNotions]

Can't hate you, TW ... I'm a "recovering" lawyer myself ... blew my adrenals out totally about 20 years ago and had to hang up the spike heels and fancy briefcase once and for all ... I became a librarian ... nobody hates librarians...

[TWhil195]

Five, you are awesome. I can just tell.

I am pretty sure my depression was basically a post partum issue, and no, I don't want to be on any medication. However, the bigger issue is the daily headaches that responded well to cymbalta. Headaches are the primary issue, thus the neurologist. I feel that I won't know till I'm off the stuff whether I still need treatment for daily headaches. My preference is to keep searching for the cause of my headaches instead of throwing medicine at them. But it's been a long journey on that issue.

[FiveNotions]

You're right, TW ... keep searching, doing your own research ... throwing meds at us is all the docs know how to do ... there are alternatives ... several others here on the forum suffer from headaches ... I'm sure you'll be getting some input from them soon ...

 

Frankly, using Cymbalta to stop headaches strikes me as comparable to using a tactical nuke to take out an ant hill .... there are more appropriate, proportionate means to deal with the issue ...

[thismoment]

TW

 

Hi. I see you were put on duloxetine for pp depression and headaches and the symptoms were subdued for a couple of years. The catch-- as you are now able to grasp-- is the physicians have deposited you atop Cymbalta Mountain and the descent is often protracted and difficult, and you will not end up in exactly the place you started. Surely there were other options like therapy, massage, and appropriate headache meds. But that ship's sailed.

 

You had gone into relative withdrawal (drug pooped out- brain zaps) and the doc moved you from 60 to 90. That's okay; 120 would be next for a while, then either onto another SSRI when the 120 poops out, or you must descend Cymbalta Mountain.

 

What was the reason for dropping abruptly from 90 to 60? Adrenal-related and weight-gain specifically? Too fast, as you now know.

 

"Since then I've done a ton of research in an effort not to give up and go back to 90."

 

There is no judgement in going up or down, there is only quality-of-life either on or off drugs, it doesn't matter. And no, you're not crazy, but people and physicians will think you are when you tell them after 2 or 3 months that you're still experiencing withdrawal symptoms from the 90-60 dose-down; it takes time to heal your brain. You've been exposed for a moderate length of time, and there is some correlation between time-on and time-to-get-off.

 

Do you plan to descend Cymbalta Mountain all the way to the parking lot?

[TWhil195]

thismoment, what you described, going up in dose and forever chasing the next med, is exactly what I don't want. I have a strong desire to be medication free.

I honestly don't think my neurologist understands the kind of withdrawals cymbalta triggers. He was the one who said to reduce to 60mg and see what happens. He also is very pro medicine and says I need to be content with being on it. We just think differently about medication.

I definitely want off this drug. I have no idea what that will look like when I'm totally off and having no withdrawal symptoms? Will it trigger daily migraines like I started having after child was born? Have I fried my brain with this drug and I'm always going to be medication dependent? At one time I was on a 4 medicine cocktail for migraines. I weaned off all of them. Cymbalta is my last hurdle to being medication free.

I'm terrified of the journey, but I think I'm even more afraid of what I'll find at the end of it. There, that's honesty.

[thismoment]

TW

 

Your desire to be med-free is half the battle in getting there-- it isn't a casual endeavour as you have discovered in reading the posts of the intrepid and dear souls on this forum.

 

Let's do it.

 

First off, the timeline can't be an issue-- if it is, you may as well quit cold turkey. FiveNotions, Gail, and TFL will help you with their experience of cold turkey, so you might re-consider the CT.

 

How will it end up? Probably better than you imagine, but you simply must put in the time. And the slower you go-- the fewer and less difficult the symptoms: it's possible to have very few symptoms with ultra-slow weaning (more later).

 

So we can talk about timeline if you wish. FIRST get stable on whatever dosage you choose 60, 90-- it doesn't matter. Get stable and talk to those closest to you. You want to do this?

[TWhil195]

thismoment, a million thank you's.

Right now I'm not too worried about timeline except the timeline of getting stable again. I am four weeks into this dose down and it sucks and is scary but my gut tells me to push through until its better. Then I can deal with a slow dose down regimen. Some moments I am fine and then I'll get a wave of dizziness and feel like I have the flu for hours. Ugh. I hate this. Trying hard not to play into the fear and freak out.

[thismoment]

TW

 

What you are describing is 'normal'. The wave-action is standard-- symptoms come in and whoosh over you and they fade-- then a different symptom arrives and washes over you for some hours or days and it subsides. 

 

You can increase your dosage now, or just wait for these symptoms to settle down. Either way, please don't let the time factor be a guiding force or it will come to dominate the process and you'll be anxious. You'll be anxious as it is, so there's no need to make it worse. This first part is a foundation, and that has to be laid down simply and steadfastly; it's the foundation for the rest of your life, and it needs to become a mission that matters.

 

Take care.

[TWhil195]

Ok. Step one: Getting stable. Thank you for the encouragement.

[thismoment]

TW

 

The fact that you are getting symptoms after a month is not surprising-- after all your dosage was cut by a whopping 33% which is a big chunk of cold turkey! 

 

Many generics have few beads (like 7-14), and the step-down method is used. With the brand name Eli Lilly, 30 mg has something like 280-300 beads and you can taper that off gently with no steps. Both systems work, but when stepping down with fewer beads, symptoms will appear after the reduction and you need to wait until they subside before removing more beads.

 

Understandably, a person wants to get this stuff out of his or her system as fast as possible-- but that isn't necessarily the best strategy for healthful living during withdrawal/discontinuation and it's likely not the best strategy to ensure the quality of the repair long-term (although there is no science on this yet). The horror-show is in the symptoms during withdrawal and discontinuation (after the drug itself is gone); symptoms can be reduced (even kept at bay) by controlling the rate of weaning. 

 

A symptom may be viewed as an indicator that the rate of reduction is too fast.

[TWhil195]

There are 270 beads in my 30 mg pills. I know, because I counted the first time I tried to wean. But I was taking out 90 beads (10 mg) at a time and basically went from 90 mg to 45 mg in two weeks. Then crashed hard. Clearly that is not what's meant by "going slow". What can I say? Patience is not one of my strong qualities.

This is the second go around. My biggest concern is that the daily headaches I am getting from the dose down will be permanent because my brain will get use to that state of irritation during the dose down and will not stop when the withdrawal period is over. I feel I need to try to do this without triggering headaches. Which Im understanding means sloooow.

I have a neurology appt today so we will see what he says.

[FiveNotions]

Yep, TW ... sloooooooooooow

 

One thing you'll learn during this process is patience ... hard lesson, but very useful ... I sure learned it ... totally the hard way ... if I'd bead counted, slooooooowly, I would have saved myself a lot of unnecessary suffering ...

[TWhil195]

Yes, Five, I will admit that this is a case where this 38 year old should have listened to her mommy who keeps saying I'm too impatient and going too fast.

thismoment, do you think there is more risk of permanent damage when you go fast and have huge side effects then when you go slow? And if I go slow enough, do you think i can do this with no withdrawal symptoms?

[FiveNotions]

TW, I'm going to chime in on the question to TM ... my own experience, cold turkey, tells me that yes ... for me at least ... I've done far more damage to myself than if I'd weaned slowly. (I didn't find this forum, or learn about bead counting until it was too late to go back and start over and do it that way).

 

However, I'm 61 and was / am in lousy physical condition (no exercise, etc) ... so, that likely plays a big part in my ability to "bounce back" / heal.

 

But why risk it? Why not just play it safe and do everything you can to protect yourself and prevent permanent, or just semi-permanent effects?

 

For example, years ago a doc let me get addicted to Xanax ... it took me 2 full years to get off of it ... but I did so with relatively few effects during the process .... if I'd gone fast, I would have put myself into the hospital for sure ...

[fishinghat]

TW, it shouldn't cause any permanent damage. By dropping fast you simply remove the Cymbalta faster from the nerves involved. These nerves have to learn all over about how to process serotonin, adrenaline, etc. and that causes the terrible symptoms.

[TWhil195]

Ok. Such good thoughts. I feel lucky to have found you three wise soldiers.

[thismoment]

TW

 

270 beads-- good; that's easy to work with.

 

There's no science right now on whether weaning faster or slower impacts the quality of the repair. However, there is science on how stress impacts our health and cold-turkey or a fast wean will elevate your stress levels for many months! That can't be good. 

 

It's probably best not to imagine what mechanisms might be at work regarding your headaches. As you know, self-talk is the science behind the self-fulfilling prophesy.

 

Patience implies idling, finger-drumming, toe-tapping, sighing, eye-rolling, and clock-watching in the present while your mind is time-travelling off into imagined and totally unknowable futures. It's stressful. Diversion and distraction are more productive and healthful nouns to invoke in order to experience discontinuation in way that isn't chained to a timeline: find something to engage your spirit; discover something that will encourage movement, new perspectives, and novel vantage points; unpack some of that Bucket List.

 

"Huge side effects" mean huge stress. There is anecdotal evidence that ultra-slow weaning yields minimal and/or no side effects.

 

"It was the withdrawal symptoms that convinced the patient that the drug is toxic and that stopping it was essential.  We used the bead tapering strategy, where 5% of the beads from a 150 mg capsule are  removed per month until 75 mg was reached. At 75 mg the tapering schedule was changed to 2.5% per month.  Some months when things were particularly stressful the patient elected not to decrease the dosage. We are at 54 mg and the tapering continues at this time. To date there have been almost no withdrawal related symptoms.  We are optimistic at this point.  This is a good experiment in ultra conservative tapering, and may answer some questions about the value of tapering ultra-slowly in preventing both acute and late onset withdrawal symptoms."

 

Playing the Odds, Revisited by Stuart Shipko, M.D.

 

http://www.madinamer...odds-revisited/

[BelaLugosisDad]

Yes, Five, I will admit that this is a case where this 38 year old should have listened to her mommy who keeps saying I'm too impatient and going too fast.

thismoment, do you think there is more risk of permanent damage when you go fast and have huge side effects then when you go slow? And if I go slow enough, do you think i can do this with no withdrawal symptoms?

I am now in my eighth month in hospital due to a cold turkey withdrawal. It is not worth risking what I am going through.

To clarify I am in the neurology ward not psychiatry.

[TryinginFL]

BLD...

 

Thank you for checking in...    Good to hear from you!  So sorry that you are still in the hospital.  I know this has really been rough on you.

 

We all keep you in our thoughts and wish you a speedy recovery.  Are things going better for you now?

[thismoment]

BLD

 

Hang in there buddy!! Before long you'll be dozing for dollars once again. lol

[FiveNotions]

Hey, BLD ! Really, really good to hear from you!

 

Are the neurotics ... err ...neurologists figuring out what's going on with you? Or are you teaching them some new tricks?

 

Sure do miss having you here more regularly ... I take it that you've got your laptop/ipad with you and are able to "sneak a peak" and make a post here when you feel up to it ... Wagtail, who's still in the hospital, apparently isn't allowed to have/use her ipad ...

 

We're rooting for you! Keep checking in when you can ... (hey, are there any cute nurses or lab techs to brighten up the scenery? )

[thismoment]

FN

 

BLD is a pilot-- anything in a skirt is cute! lol

[TWhil195]

Hi BLD, that sucks that you are in the hospital. I'd flirt with you to make you feel better but I promised my husband I wouldn't fall in love online. feel better anyway!!