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About 18 Years On Snri Total, 5 Yrs On Cymbalta. Looking For Advice On Weaning Off


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#1 chaoskitty

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Posted 14 January 2021 - 07:46 AM

hello. I am 30 years old. I started taking effexorXR when I was about 12, up and down doses but pretty consistently. around age 25, I wanted to get off because of sexual side effects mostly. honestly, I did not know what my life was like without it. I was doing really well at the time. 

 

I weaned off slowly, but the brain zaps got to me. I lost my job, my bf, dropped out of college, and had an agoraphobic episode. I decided with my Dr to get on cymbalta as it was "the improved effexor" with "less side effects"

 

well here I am 5 years later. doing some work on my agoraphobia (that is a result from over medication of xanax, also started at 12, another story) and truama/cptsd with edmr and dbt. dbt is FINALLY clicking for me. (yay)

 

I'm not functioning, haven't ever really to be honest. I can't hold a job for more than about 3 months. grocery store gives me panic attacks. ok so I know this may not sound like the best time to get off but ...what has an snri ever done for me anyways? it literally has not helped me, and I don't know why doctors would continue me but that's another post...

 

I decided I want off. my insurance has been weird and threatening to not cover it which is stressful. if I forget even a day, I get withdrawal symptoms, which is just awful. I'm so sick of depending on something that doesn't do anything good for me. recently what pushed me over the edge is I feel sort of sick ON them. maybe from increasing my awareness with mindfulness. 

 

I just couldn't stand it anymore and went straight to half. oh my god. let me tell you- my jaw loosened, my body loosened, I felt like I was getting more oxygen...or maybe blood pressure lowering? I think it's the norepinephrine. It was VERY uncomfortable (brain zaps fog wise) but I actually got through it by microdosing mushrooms. (I'm desperate, and it worked great, no tripping involved)

 

well, after that I feel SO MUCH BETTER! authentic! I can feel range of emotions. I've been so sad for so long. thought it was just ...how I was. I'm finally feeling some joy in life. my sadness/worry hasn't changed intensity, but wow is it so much easier to deal with if you have some contrasting joy!!!

 

so last fall I went from 120mg to 60mg. two weeks ago I went from 60mg to 40mg, and I'm feeling just as great. looser, can breathe better, no chest tightness, less jaw clenching. so I've been excited on this journey so far but I realize the worst is probably yet to come.

 

 

with my background...do you have any advice for me? I can't believe people have a hard time getting off ONE of those balls inside the pills?? I realize too I'll probably have to cut them and count them at some point. most of this action is through my own. my psychiatrist is nice but I'm not sure she has experience with this in particular.

 

also..I know my current status of emotional health isn't great. very depressed, often suicidal, overwhelming emotional pain, panic disorder/agoraphobia, cptsd/truama...it just ... CAN'T get any worse. I could be dead, that's the worst. and I'm ok with that, I've suffered enough. I'm not currently suicidal, but I'm usually suicidal because of the emotional pain. I guess...I figured...the only way out is through the bottom of the hole. (like dante's inferno) will I survive it? I don't know. but I know I can't live like this. I hope you understand. I really am fighting to survive. and I realize my suicidal tendencies are just me trying to end the pain. with dbt I realize by avoidance/unacceptance prolongs pain and suffering. 

 

I have realized too, I've prolonged getting off because I'm terrified of brain zaps again, my life falling apart (what little I build), etc. and those fears don't outweigh the risks anymore...my life can't fall apart any worse I don't think...(I guess homelessness but thankfully my parents allow me to stay in the basement. I don't qualify for disability because I'm "too young" and "college educated"(I dropped out) and "not drooling at the mouth")

 

TLDR: been on snri for 18 yrs, cymbalta for 5. looking for advice, similar stories, relation, *what I should expect*, thoughts/validation...

 

really, will I have to wean one bead at a time?? what part is the hardest? links to other posts about weaning strategies are appreciated. 

 

thanks for reading


#2 chaoskitty

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Posted 14 January 2021 - 09:17 AM

I'm reading the ebook now (:

#3 fishinghat

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Posted 14 January 2021 - 09:24 AM

Welcome Chaoskitty.

 

Well i Just saw your post about the ebook. You took the words right out of my mouth.  lol

 

The worst part of the withdrawal is the last 10 mg. I had one of those terrible withdrawals and if I had it all over to do again I would do a 3 year weaning. Sucks right. The key here is to take plenty of time to recover after down dosing. As you read the ebook you will have a lot of question s. Feel free to come back and ask as many questions as you want. We are here for you. 


#4 chaoskitty

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Posted 14 January 2021 - 04:16 PM

finishinghat, you are so amazing for compiling this information. I was reading the side effects part and had a lil panic attack just ...I just feel like I've been slowly poisoned! is this why I have tinitus?? that's crazy. i will have to read this slowly, haha.

Is there a section on like, maybe a "plan" like 3 year plan? I would absolutely take my sweet time getting off considering I've been on it for this long. I dont know how aware my psychiatrist is of how awfully uncomfortable if not insane the withdrawal effects are. I've also heard I might have a place nearby that helps ppl get off medications, so I'm going to be checking that out as well.

I appreciate this website so much. thank you for all your hard work.

edit: 3 year plan to get off 10mg? yeah I need those plans haha

also wondering how long I should go between doses, if there's a recommendation for that. I rather go slow and do well than backtrack.

#5 fishinghat

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Posted 14 January 2021 - 05:53 PM

Thank you for the kind words. A lot of people helped me when I went through my withdrawal so I am just trying to contribute back to the forum.

 

Tinnitus is a common side effect as well as a withdrawal symptom. It is usually one of the last symptoms to disappear.

 

There is no specific 3 year plan but there is a section called "Bead Counting".  It is just a matter of counting the number of beads in your capsules and figuring out how often to drop a bead so that it takes a given time to wean off. We will be glad to help you do your calculations when the time comes. 

 

Most psychiatrists (at least in the USA) are not trained on withdrawal or the complications that occur from it. They are NOT required to be trained by the FDA. They learn about withdrawal from listening to their patients complain. 

 

" I rather go slow and do well than backtrack."

Now that is a wise statement.

 

When you get a chance you need to read the section on bead counting as well as weighing beads and then we can talk about details. Not all capsules are created equal.  lol


#6 invalidusername

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Posted 17 January 2021 - 03:44 PM

Hi chaoskitty,

 

Welcome to the forum and apologies for delayed response. Covid here in the UK is really taking its toll on people here - myself included.

 

Tinnitus is, as Hat said, a frequent complaint between members. There are serotonin receptors in the ears which few people realise, so when reduction occurs, it makes sense that hearing and balance can be effected as a byproduct. But it will go.

 

"They learn about withdrawal from listening to their patients complain."

 

LOL - sounds about right!! I gave the link of our eBook to a p-doc right before I told him where he could stick his "advice". I would argue that it is one of the best withdrawal guides available - especially for Cymbalta.

 

As Hat says, we need to be talking bead counting here, and whilst at first it might seem a little difficult, it will make sense, and we are here with you the whole way to make sure you get things right.

 

IUN


#7 chaoskitty

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Posted 27 January 2021 - 04:05 PM

ok so I read about bead counting and my question is what mg do people start bead counting on?

it looks like my dosage will go from 40mg to 30mg to 20mg and then head count?

or I'm also seeing it might be a smoother ride to bead count earlier.

I'm experiencing a lot of memory processing issues, train of thoughts dropping mid sentence, can't recall much, working memory all scrambled, like forming complicated ideas is more difficult...and when I try, it just kinda sputs out. I feel dumb, slower.

I'm gaining more energy, but starting to get a bit restless. that is so cool about serotonin receptors in our ears, I had no idea. offsetting my stomach issues with plant based/root vegetables meals...not very hungry anyways...

my actual physical anxiety has decreased, I feel emotionally authentic. I have energy unlike before to do things. but I still have to learn to/practice focus. I feel looser, lighter than I did on the higher dose. like breathing got more effective. I used to get a crushing feeling in my chest and that's gone.

thanks for the support... next time I see my psychiatrist I'm going to discuss the plan I have and ask her if she knows anywhere or anyone that specializes in getting off medications, it's a long shot but where I live there could be someone. I was also considering, erm is it called cross tapering? since like prozac would be easier to get off since it stays around in your system for awhile.

I'm going to probably stay on this dose (40) for another month or two, hopefully things will improve then I'll go down again?

#8 fishinghat

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Posted 27 January 2021 - 05:14 PM

Most, but not all, have little problems going down to 30 mg. Once stabile on that dose they begin bead counting. Each person is a little different though. 

 

Many have cross tapered to a different antidepressant and then weaned off that. The most common ones are sertraline, Lexapro or Prozac. It is not as simple as it seems as some antidepressants may have little effect on Cymbalta withdrawal and others may work well. In my case the drs tried cross tapering me onto 4 or 5 different alternate antidepressants (one at a time ) before they found one that worked. Most  members usually only have to try 1-3 before finding one that works.  Of course there is also the risk of developing side effects from a new depressant also. 

 

By the way, I sure do recognize the symptoms you mentioned. The inability to focus and the paranoia that can develop are terrible to deal with but they do fade in time.


#9 chaoskitty

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Posted 07 February 2021 - 11:59 AM

hey. so my scrambled egg brains is really getting to me. my thoughts just fall off a cliff and I get confused. it's really frustrating.

my depression is seeping back in too.

I'm super curious what's going on in my brain with the thoughts just dying mid-thought. is there a keyword or anything I can search to read more?

also I want to try vitamins, as the probiotics is doing WONDERFUL... but since my brain is fizzing out on structuring complex thoughts ...er... 👉👈 could I get some help picking out vitamins?

I remember fish oil working great for me, and living in a non sunny place I'm supposed to be taking vitamin D. I'm still agoraphobic so I can't really go in for a blood test easily..(to test vitamin levels)

I started eating vegetarian, which has stopped my ibs symptoms. I forgot it was normal to not have to go to the bathroom after a meal ...and I take my pill with a probiotic drink every morning which has greatly increased my mood somehow??? I guess, again, I was just really used to the heartburn/indigestion...

so are all the cymbalta class action cases closed already? lol..

argh I'm all over the place. spaghetti brains. thanks for everything you guys do.

#10 fishinghat

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Posted 07 February 2021 - 03:54 PM

Confusion? Oh yea. All over the place in nearly all members. The neurotransmitters involved, adrenaline, serotonin and norepinephrine all react with the amygdala and hippocampus. These are  the centers for fear, panic, paranoia, etc. With the perpetual rollercoaster of these neurotransmitters thinking clearly is questionable at best. Also, high adrenaline also reduces blood flow to the brain which further exasperates the situation.

 

Vitamins are the number one item for emergency room poisonings.  You can not only take too many (especially b6) but some people have high sensitivity to things like iron, selenium and more. The best thing to do is get a vitamin and mineral screening done by your drs office so that you take only what you need. I believe that vitamin and mineral screening kits are available through Amazon but don't hold me to that. There is an excellent section in the ebook about the hazards of low as well as high vitamin levels. Also many minerals inhibit each other. For example taking calcium lowers your magnesium, and many more examples in the ebook. 

 

Fish oil ( I would recommend high epa and dha omega 3 over fish oil is a good idea. Do not exceed 3000 mg as it may cause an irregular heart beat.  Vitamin D is a fairly good choice if in the non-sunny area but you really should have your levels tested first. I would also caution you that taking high levels of vitamin B6, iron and vitamin D are all in fashion right now so be sure and focus on the recommended daily allowance when selecting a vitamin. For example the recommended daily allowance of vitamin B6 is around 1.5 to 2 mg/day BUT some supplements contain levels of up to 1000 mg/day. A few members have had overdoses of B6 as well as magnesium, etc. Use caution.

 

The stomach contains a layer of nerve cells in the wall of the stomach and these run directly to the brain where they aide in controlling emotions and other sensory items. This layer of nerve cells is often called the "second brain". Getting your stomach and intestines comfy is critical for mental health.

 

As far as I know all the class action lawsuits are closed but I could be wrong. Don't feel too disappointed. As far as I know most settlements were in the neighborhood of $300 to $1,500. Also the courts only ordered the manufacturers to add only minimal info on the risk of withdrawal. Nor did the court order manufacturers to retrain or send notification to drs on the risk of withdrawal. 


#11 chaoskitty

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Posted 07 February 2021 - 06:09 PM

fishing hat, you are amazing! thank you.

#12 GrandmaV

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Posted 13 February 2021 - 11:34 AM

New here... what is the ebook mentioned?


#13 fishinghat

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Posted 13 February 2021 - 01:00 PM

The ebook is a compilation of member experiences with different supplements, medical research articles and recommendation. You will find a lot of good information in there.

 

https://www.cymbalta...-ebook/?p=93991


#14 ForLyla

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Posted 15 March 2021 - 10:39 AM

I think you should give the carnivore diet a try for a good month. Sounds like you have a messed up gut with some kind of overgrowths like me. Usually that ties into or causes autoimmune problems.

#15 chaoskitty

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Posted 06 April 2021 - 09:14 PM

hello I wanted to update my situation, as it's taken a bit of a turn.

I haven't touched my meds, things seem fine, I talk to my doctor in a few days. I was actually considering going down a dose.

april 1st i had a new experience with a panic attack... since then it's been a struggle. I've been reading about c-ptsd, adhd, and anxiety helps books. I've been doing so much work on myself. I'm pretty bummed because that panic attack has left me afraid of another, and insecure. (still very agoraphobic)

I'm having a hard time focusing just trying to write this... I guess what I want to know...I feel like I read somewhere, that there are delayed withdrawal/down dosing effects?

I guess I could just forget about what happened, I can barely recall, mostly recall how I described it. but it was almost as if I went unconsciousnes while being concious, like a lucid dream. I was having head crushing feeling and sat up to puke, and reality was just gone. I wasn't in my room, it was dark and cloudy. I couldn't hear or talk or move, like um, sleep paralysis. it really scared me... like physics broke a rule. like my mind broke. well it shook me up and last night I had another panic attack but I acted as soon as I could and didn't have the head crushing, so it was almost more emotional hype. the head crushing before just happened, seemingly out of no where. I was pretty stressed though, but logically I'm all wtf emotions.

I've also kind of realized, in my reading, that I'm most comfortable in a dissociative state, which I fell out of after the first panic attack.

so...maybe this is just my rocky healing journey... I feel a bit disheveled. I'm considering asking for lexapro or something to help smooth things out. I don't know. I just can't take anymore suffering...

I've lost some weight and I'm still on probiotics...I was eating practically vegan and that helped A LOT. but I stopped because I ...just have a hard time making food or doing anything. but im pretty much getting used to having mild food poisoning everyday

my family has been treating me like an addict and think I ate drugs when I tried to explain my panic attack... it's been rough. I feel lots of shame, no validation or support. yet I fear even they will abandon me

#16 fishinghat

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Posted 07 April 2021 - 07:18 AM

These symptoms do occur sometimes. While delayed withdrawal symptoms may occur they can usually traced back to something. We have seen this in members if they get drunk, work with solvents, over exercise and other things that effect the central nervous system. In your case you mentioned that you recently lost weight. This has often lead to these 'delayed' effects. The reason is that Cymbalta is fat soluble and excess unused Cymbalta is stored in the fat tissue. When someone loses weight some of this Cymbalta is released. When the weight loss stops you can actually have a relapse in symptoms due to the drop in blood Cymbalta levels. Don't panic (no pun intended) it will fade away with time. There is data in the ebook about Cymbalta storage in various body tissues.


#17 chaoskitty

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Posted 07 April 2021 - 08:55 AM

thank you, fishing hat. it helps to hear. I appreciate you so much. thank you.

#18 invalidusername

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Posted 09 April 2021 - 08:42 AM

Hi Kitty

 

Apologies for the delayed response. Sounds like you have been through a fair bit here. But with the best will in the world, the books you will read about the anxiety are aimed at those who have got stuck habitually with their anxiety. What you have is purely chemical induced rather than situational - although the subsequent attacks may have been trigger by the first being such a shock.

 

But Hat has already covered what I would put good money on this being the case with the weight loss and the reserves in excess fat tissue. You would do well to stay put whilst your body gets used to the adjustment in your weight and bmi relative to the dose of drug. This can affect some people more than others, and it has hit quite hard in your case, but similar things to what we have seen before. 

 

I really feel for you going through this at a seemingly early stage and this takes courage. You have done well to get where you have and knowledge is power in these cases. It helps to know what is going on.

 

Please keep in touch and let us know how you are doing and if anything else strange occurs.

 

IUN


#19 chaoskitty

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Posted 09 April 2021 - 06:35 PM

thank you so much invalidusername...I could cry relief. I can't express how much it helps to feel understood and not belittled (I wish my doctor was better but what can you do)

I'm starting a low dose of lexapro (5mg) tomorrow in hopes things smooth out.

even though I'm struggling/suffering...I feel like in the big picture, it's a good thing... I could probably quit smoking cigarettes and weed altogether now. but I find extreme comfort in them so...hah, we'll see. I'm too anxious for them now, haven't smoked weed in 3 days now. I really miss how it "dumbed" me down. helps my whirlwind of thoughts. I'm looking into adhd/cptsd therapy styles...that is definitely the root of my issues, I think. unfortunately, adhd seems to be really misunderstood, probably not treated too well either. I'd rather it be called "executive dysfunction disorder."

I kind of expected to have a hard time getting off cymbalta. my sister is also prescribed cymbalta, same dose as I was, went down real fast with aid from lexapro. I'm not sure when she started going down but she started a few months after me. she's going down to 20mg next week, while going up in lexapro. I'm so proud of her and happy she's feeling better, of course it's been a bit rough for her as everyone experiences things differently... I'm very envious though!

I guess I will continue to listen to my ocean sounds (helps with runaway thoughts) and take care of myself the best I can and hang on for dear life! these panic attacks cannot kill me! even though sometimes I wish they would. it does feel very like, chemical/hormone/physical panic rather than the usual emotional hype panic I can control with the skills I've learned throughout my life.

I really truly appreciate the support and the light you guys provide in such a dark time. I can't wait to be a success story. one step at a time! one moment at a time...

#20 invalidusername

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Posted 09 April 2021 - 08:12 PM

I can't wait to be a success story. 

 

That's the way... we all get there. And when you do, you will look back with pride knowing you have become a stronger person because of it. I read some of my first posts here and it scares the crap out of me, but it just shows what we can go through. LDN having Lymes with psychotic depression, Hat confined to his wardrobe for months on end and Gail baking her apple pies despite the chronic depression and never-ending pain. These guys are a big part of the reason why I am still here. 

 

I know it sounds crazy, but just tell those panic attacks to do their worst. They can't go beyond that point. It is just your brain skipping a few steps and not rationalising as it should. It will calm down soon enough and it will be nothing more than a bad dream. Bit of a cliche, but its the truth. 

 

And I would never underestimate what you are going through. This stuff has a real sting and every hour of every day you are walking through the valley of darkness holding on to the faith of that distant light getting ever closer. 

 

So damn proud of you petal. 


#21 chaoskitty

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Posted Yesterday, 11:40 PM

hey little update... Saturday I started my lexapro. I had to give my sister all my money in my wallet to go get it for me, lol. (only 12 bucks)

I really hit a tipping point. I thought, I couldn't take it anymore, I was so tired, the constant panic attack, racing thoughts, my family making it harder... I decided I'm going to a psych ward to get pumped full of meds!

well I called a crisis line. I was digging my nails into my skin because it helped a little. I'm a past cutter so I knew I was out of control and I was scared. if someone offered to kill me, I'd beg them to! I talked to the crisis line thinking they'd help me find a place to go but they actually just validated me and listened...I was able to exhaust myself (I could barely talk through my crying, bless that person on the phone) I even got a little angry because they said well the hospital probably isn't going to help much.

in my despair I truly had no where to go. the option crumbled and I just ...idk. took another step further in my hole, it felt like.

well thankfully I'm sensitive to medication and also pretty high on placebo effect and I could feel the lexapro a tiny bit. it's Sunday night now and all day today was ...not as bad as before. my checking in my body didn't send a rush of adrenaline. I had some choice!!!

so I'm hoping when the lexapro fully kicks in, I can stabilize. its very mild, but enough that it's almost manageable. I can use my skills to sway things more.

I could still easily panic but I'm probably a pro at panic attacks now. I feel less adhd mindset. I still can't sleep though, but I used to really oversleep. Ive started doing little workouts before bed. eating is difficult still...still experiencing ibs stuff. honestly I've just been eating like eggs, toast, rice.

the most difficult part is sleeping, staying asleep...nightmares...I do feel rested though? lots of energy I don't know what to do with. (that's why I thought exercise would help,I never had the energy to do it before) and mornings are hard, for some reason. I never used this weighted blanket I have, but I love it now!!

went from smoking 5-10 cigs a day to 2. went from about 5 bowels of weed to maybe 4 hits a day.

sorry I'm rambling I meant to just let y'all know I didn't check myself in the psych ward, and I didn't take more cymbalta (idk if that woulda made me feel better but it's like poison in my mind) also i let myself ramble in case any of this information helps anyone else/I might need it later.

I could cry relief but it's still bad. I'm just so thankful I started the lexapro in time before I hurt myself... because if I started hurting myself I'd probably fuck up and kill myself on purpose/accident. and that crisis line! my family cannot provide validation or support. they think I'm faking it or something. or I deserve it? or I'm a drug addict? idk.

I had an easier time getting off xanax that had me, like you said locked in a wardrobe, I was totally only comfortable in the corner of my room for awhile. my first agoraphobic episode.

I hope that was the hardest part but I doubt it! I plan on doing a lot more resourcing with my therapist... now on the lexapro I don't feel adhd, so I'm confused, I'll wait after I go through this to access that... oh! and work on my paradoxical thinking, like you said, invalidusername, "do your worst anxiety"

ahh im totally procastinating going to sleep. wishing you all healing and light and appreciation thank you thank you thank you I don't know what I'd do without you guys

#22 chaoskitty

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Posted Yesterday, 11:42 PM

"small update..."*wall of text* oops.. >_<

#23 invalidusername

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Posted Today, 07:23 AM

Hi Kitty,
 
Don't worry about the "wall of text" :) This is often how it happens and it helps to let it all out. That is what we are here for... Start typing and just let it out.
 
The sleep will be again down to the mess of norepinephrine going on in your brain and despite nightmares, people can still hit a good deal of rem sleep which will allow the energy in the morning. But well done for reducing the cigs and leaf.
 
I really feel sorry about your position with your family - there are many members who have had similar problems and we direct these people to the family support sections because these people really do not understand what we are going through. Look to friends and even the forum here for the validation. We don't say it to make you feel better, we really do know what it is like. My sister was a crisis nurse for 12 years and she really doesn't get me at all - source of much upset and friction. She also feels like I could get over things in the snap of my fingers. God only knows what "training" she had.
 
Please reach out if you feel the necessity to harm yourself. I too have been there - it made me feel better, but looking back I can see it really wasn't the right route to take, but your brain will tell you otherwise, it makes perfect sense in the moment. 
 
So you have started the Lex, and are you still on the 30 Cym as well and weaning off that as you let the Lex take effect? 
 
I am going to lead you to a great video - albeit it relating to Pregabalin - but the points are all there. This guy is great and you can't help but laugh at his thoughts, but his advice is spot on.
 
 
Reach out as often as you need - there is always someone here on the forum who will get back to you.
 
You are at a really tough point at the moment and make sure you recognise your achievements. You are doing your best and that is great as many others wouldn't even get that far and will have shyed away from the commitment to setting yourself free.
 
IUN

#24 fishinghat

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Posted Today, 08:29 AM

Really tough situation CK. Don't give up though. It may take awhile for the Lexapro to fully kick in but you should still see some small but consistant improvement during that time. If necessary, in the long run you can always go up in dose later if needed. God bless and hang on.





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