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Need Help - 17.5 Weeks Off Rapid Taper


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#1 Driven

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Posted 07 November 2019 - 09:27 AM

In dire need of help.

 

Something is wrong and I'm scared.  I'm in deep trouble and need to do something to help. I'm 17.5 weeks off after an apparent rapid taper after being on Cymbalta 9 weeks then an 8 week taper.  I'm starting a new post but my entire story is here: https://www.cymbalta...for-some-input/

 

I'm losing faith and on the brink of losing everything important to me in my life.  I am a tough person and this is breaking me.  It feels like I'm losing cognitive functioning as more time goes by.  My headaches seem to feel different from what I read from typical withdrawal symptoms and they have been getting worse starting about the 3 month off mark which would be 5-6 weeks ago now.  My brain actually feels like it is on fire on the top/back location and this has persisted most every day...but has gotten worse in last several weeks.  It moves around in various locations in my brain (top, back, side, bottom).  The intensity of the headaches are as bad as the first couple weeks.  I'm having a harder time seeing my computer screen due to vitreal floaters (crazy amount which I've never had before) and my sleep is getting worse again.  My wife and kids want their husband/dad back.  I'm not really even functioning at home and responsibilities are sliding.  This is turning into a horror story and I'm going into a sense of shock. I was put on this drug for help sleeping and after 9 weeks I then tapered over 8 weeks.  I'm 100x worse and it started 3 days after coming off Cymbalta.  I got 3 opinions from doctors and several pharmacists on tapering instructions.  NOBODY said anything about slow tapering.  I'm so angry.

 

I have tried most everything listed on all these forums and have been diligent about it.  Supplements, eating anti-inflammatory diet, good hydration, hydroxyzine, clonidine...pretty much everything.

 

Worst symptoms right now at 17.5 weeks off:

Sleep - average of 3 hours/night starting last 2 months. Most mornings I wake up with a panic attack.  

Brain fog - I'm starting to lose ability to keep my job. I'm not functioning very well in any aspect of daily life.

Vision - Tons of vitreal floaters, hard time focusing yet my optometrist says all looks good except the increase in floaters. Depth perception and focusing issues and a sort of tunnel vision. Head feels like it weighs 50 lbs.  I've read enough to scare me that rapidly coming off an antidepressant can damage the optic nerve.  I've read several similar stories online and that it can be a long-lasting effect.

Depression – Never had it. I now have it and I’m fighting it daily.

Anxiety – Never had it. I now have it and I’m fighting it daily.

Derealization – I don’t know who I am anymore. I can't even smile and I feel like I'm permanently damaged.  

 

I'm on the verge of checking myself in somewhere. What should I do?  My family members are so confused as well.  I'm doing tons of therapy to help cope with these symptoms but I'm wearing down.

 

The only thing I'm on other than supplements is a low dose of 200mg of SAM-e which I started when I came off at the instruction of my doctor.  I've experimented with it a bit off and on and noticed no real impact.  I'm actually tapering off and have been cutting the pill over the last week.

 

I can't make a decision on what to do and nobody in the medical field can really give me any answers.  Start another SSRI or a few beads of Cymbalta to curb some of this?  Reinstating by starting with a few beads and seeing how i respond seems crazy.  Regardless, I can't shake the feeling that I may be in this protracted withdrawal for year(s). 

I can't make a decision on what to do and nobody in the medical field can really give me any answers.  Start another SSRI or a few beads of Cymbalta to curb some of this?  Regardless, I can't shake the feeling that I may be in this protracted withdrawal for year(s). 


#2 fishinghat

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Posted 07 November 2019 - 10:00 AM

No easy answers here Driven but some comments.

I can truly sympathize. I was in a similar condition for nearly 9 months. I fought it for 3 months and then tried most of the supplements with minimal help. The drs tried 3 different benzos, 3 different ssri/snri/tricyclics with no effect. Clonidine and hydroxyzine did help take some of the edge off but that was all. I finally went on Zoloft and got relief I have spent 6 years coming off the things the drs tried that didn't help but am still on the Zoloft. That will be the next thing/last thing to wean off of. My case seems to be one of those rare extremes but they do happen.

Another ssri/snri/tricyclic - Might help but might not. May just be another drug you have to wean off of later if it doesn't help. You may develop side effects of from a new antidepressant Most effective ones for other members are Prozac, Zoloft and Lexapro.

Going up a few beads to try and get some relief works for most but not all. My recommended approach is to go up 1 bead today, two beads tomorrow , three beads the next day, … until some relief is obtained. Stay at that dose until stable and feel strong enough to start weaning again.

Weaning of sam-E is no different than weaning off an antidepressant. It will bring on more withdrawal symptoms. You might go back up on the sam-e to see if you get some improvements. Stay on the sam-R until you deal with the Cymbalta withdrawal and then wean off of it.

You tried the theanine right?

Hang in there Driven.

#3 DThiessen

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Posted 07 November 2019 - 12:18 PM

17.5 weeks really isn't that long. The brain takes a while to re calibrate. Just look how long it takes for the pill to actually work consistently - usually 3 months. So for it to equalize AFTER quitting, I have no doubt it would take at least twice as long or more as it has to do the work on its own (hence, people have called this stage protracted withdrawal). Not like when you start a med and it does the work for your brain and STILL takes 3 months to stabilize. So there's that. This ALL will pass. Thinking that it won't is the absolute worst thing you can do right now. That will only create torturous anxiety along with all the physical symptoms of high anxiety which you describe. I would suggest seeking someone to talk to (I am not saying go see a shrink! I am not implying anything of the sort) but talking it out with a professional sometimes gives you such fresh and calming perspective that this is temporary as in this state it is almost impossible to tell ourselves that even when we know because it is just so rotten long! You literally start to think 'ok, this is my new normal, this is the new me, how am I going to do this forever if this is life now...' and it can get dark real fast. Trust me. Currently going through this. Just read some of my posts.

 

Everything you are describing is completely normal and accurate for this drug's withdrawal to a T.

 

I would SERIOUSLY watch the supplements - your glumatergic cycle at this time will be hyper sensitive to all meds and supplements even vitamins so ones that are supposed to curb anxiety may actually cause it. This happened to me - right down to Omega 3 had given me panic attacks and light headedness. This is also known to cause mental disturbedness in people going through withdrawal that have reached a low level of psychosis and extreme stress from it all - it can actually work in reverse. It is 50/50. Quick research on the adverse effects of it will show you this. It also messes with blood pressure level - hence extreme headaches. Just some food for thought. I am throwing it all at ya here and hopefully it will give you some tips!

 

All in all - your experience is SO SO NORMAL. Do not be scared. Find someone to talk to so that your not alone with your thoughts (it can be hard for family members to truly understand sometimes - a professional in the area is usually helpful). 

 

I have also experiences everything you have and they have all started to slowly dissipate - SLOWLY - month by month. Let me know if you have any more questions!

 

"Something is wrong and I'm scared." - Nothing is wrong. Your brain is rewiring and healing and of course you are going to feel the side effects of this. We all do. This is in fact a good thing. Your scared because your glutamate is high during this time. It will come and go, come and go, until it just goes and doesn't come again. 


#4 fishinghat

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Posted 07 November 2019 - 12:23 PM

Thank you for the great post DThiessen.

Just a note but the medical research shows that concerning drug withdrawal (benzos, antidepressants, opiods, etc) it takes the synapses on average around 2 years to return to normal. This is not to say someone will feel full withdrawal symptoms for that 2 years but rather a very slow recovery during that time.

#5 DThiessen

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Posted 07 November 2019 - 12:57 PM

Yes for sure I did see that as well. Hence the slowness of it all but in reality, although it feels like a lifetime, 2 years really isnt that long in the scheme of things.this is what I'm telling myself anyways haha and it's TRUE because when I think of how fast time goes 2 years isnt that bad. Sounds bad when your suffering but when you step away from it it really isnt

#6 fishinghat

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Posted 07 November 2019 - 03:15 PM

When you are my age 2 years is very precious. lol

#7 invalidusername

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Posted 07 November 2019 - 05:15 PM

Looks like the guys have got you off to a good start with this, and you are never alone in this. The forum here is amazing for these times - just look at the responses you have gotten in the last few hours. This is the place to be...

 

So many of us have been here and I really feel for you. 

 

I agree completely with Hat in going with the beads one at a time, and with DT about the supplements. It is amazing what they can do without realising it. I had one dose of iron supplement, and my goodness - the depression that followed!! One glass of wine during withdrawal - suicidal the next day. You have to be so careful, and these things really do make the difference at these times.

 

We are all here for you friend. Stay close and hold faith in God. We'll get you through this...


#8 Hrk630

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Posted 07 November 2019 - 09:16 PM

Hi Driven, I am going through withdrawl too. Been on a slow taper for about a year now. still have a way to go. On pause to let my systems catch up. I am on 20 beads 2x a day. Leaning on xanax when the going is really tough. I eventually will want to wean off that after the cymbalta. One thing at a time. I just want to help you feel supported and cared about. This is pretty awful but look for any kind of bright spots. Hopefully we can all be these for each other!

#9 Driven

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Posted 08 November 2019 - 01:41 AM

All,

 

Thank you so much for the thoughtful input.  You guys are the only connection I have that truly understands the battles with this withdrawal.  I appreciate it very much.  In addition to the w/d symptoms, I'm struggling daily with guilt/anger about putting too much trust in my first ever experience with a psychiatrist.  Even though I was on 90mg for 3 weeks, I can't believe he sold me on that dose.  I was 30mg 1 week, 60mg 5 weeks, then 90mg for 3 weeks before tapering down over 8 weeks.  It was only supposed to be a short term deal for sleep due to some abnormal anxiety i had.  I got over the issues pretty quickly and had no idea this drug was this hard to come off. A life lesson has been learned.

 

Today was tough.  I had a tough time at my outpatient therapy program with waves of anxiety, depression, and massive head pain.  The new psychiatrist I've seen as part of this program is suggesting that I consider a low dose of Seroquel.  He's not 100% convinced about this being all Cymbalta w/d and also feels like the sleeplessness is causing some mania.  I  He's very aware of my desire to not take a new drug but he knows I need help.  What is everyone's throughts/experience with Seroquel and the potential for it to ease w/d?  He's really focused on my lack of sleep and feels it is putting me in a sense of mania at times.  I'm definitely having difficulty not obsessing about this w/d and fear about getting better.  OCD off the charts. 

 

My family is at a loss and doesn't totally understand this w/d.  How could they...I get it.  They are sort of grabbing at labeling it as a new manic depression (or something similar) that is surfacing for the first time ever. My doctor mentioned this at my visit today and the cause in part being lack of sleep. I just know how I feel and how it feels like a bomb went off immediately after withdrawing cym.  

 

At this point, my wife and I are going to attend a psychiatrist session together and discuss all options (beads of Cym, Zoloft, Lexapro, or Prozac or something.  The thought of staying off any drug is first choice but my marriage might depend on trying something to ease w/d.  All said, I can't count how many time I've read that patients get diagnosed with bipolar, mania, etc when they are being assessed after cymbalta w/d.

 

Driven


#10 fishinghat

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Posted 08 November 2019 - 09:31 AM

Seroquel. Helps a few but little effect for most. It also has a withdrawal but not near as bad as Cymbalta. There is clonidine and/or hydroxyzine that can help anxiety that can be tried first as they have no withdrawal and are not addictive. Of course there is myriad of supplements as well.

#11 Hrk630

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    Trying to get off of this poisonous drug. Need support and help!Down from 60mg to 7mg. Want to be DONE!!!!

Posted 08 November 2019 - 11:09 PM

Driven I am praying for you. One day at a time is the only way I do anything, and with God's help. Sending you good wishes.

#12 Driven

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Posted 12 November 2019 - 07:17 PM

All,

I really appreciate the comments and prayers.  This is incredibly tough.  I am also thinking about each of you that are currently in the midst of this storm....hang in there too.

Yesterday, my wife and I met with a psychiatrist that I've been meeting with as part of this outpatient program I've been doing the last 4 weeks.  He now knows my story and I've also educated him a bit about the severity of Cymbalta withdrawal.  He believes me but hasn't ever seen it himself per se.  He sees my case as pretty acute and that my testosterone supplementation may certainly be playing a role in it.  He knows how apprehensive I am about taking any new medication after this torturous first experience.  That said, he's very concerned about my lack of sleep.  As mentioned, I've been getting 2-4 hours a night for the last 2+ months since being off completely 4.5 months ago.  I've had a few 5-6 hour nights but they are not restful sleep.  I've tried all the recommendations (melatonin, hydroxyzine, benadryl, etc) and I'm struggling with any relief. 

Yesterday, he prescribed me klonopin (1mg per night) to take for about a week to see how my withdrawal symptoms respond.  I did take the 1mg last night and it knocked me out for about 8 hours.  It felt good to sleep well but I feel like I'm dancing with the devil.  We discussed my serious apprehension about this benzo and it's addicitiveness...and not wanting to stretch this out.  He validated that for sure.  Prior to this, I was taking .5mg of klonopin about 1x per week just to get me 5-6 hours as a emergency.  

We talked about a low dose of an SSRI and he was very apprehensive based on how badly I've reacted to the Cymbalta w/d.  I can't blame him for that.  He was not keen on the few beads of Cymbalta either.  That scares the crap out of me too.  

His next recommendation (if needed) is starting at a low dose of 25mg of Seroquel to see how I respond.  He said that dose is so low it is hardly above Benadryl but it may help and we could titrate up if needed.  

Couple questions:

1. Do you think I have a problem if I take klonopin 1mg for 7-10 days straight?  Maybe just 7 days?...as I'm super paranoid about it.  I do not want a benzo w/d on my hands too.

2.  I understand Seroquel to be less risky than any SSRI/SNRI.  Is it a fair statement that starting w/ a small dose would be low risk if i need to consider this route?

 

Thank you again...this is all so new to me and I'm just trying to get days/weeks behind me until a decent window comes.  I did have a 4-5 hour window on Sunday where the brain fog lifted a bit, no anxiety, no depression, and it was good.  All but my vision, I'm still having depth perception issues and slight blurred vision 100% of the time.  This alone is causing major anxiety...and some depression.  It is constant but does seem to fade a bit in severity depending on how tired I am.  Praying every day that it isn't permanent.  I can drive with the vision issues but something is off for sure.  Optometrist says i have tons of new floaters and maybe a slight power change in right eye.  No other issues that he saw.


#13 fishinghat

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Posted 13 November 2019 - 08:20 AM

Over all that was a good visit.

1) The 7 to 10 days should not be a problem for most. You also can consider using it once or twice a week for a longer period of time.

2) No serious risk with the Seroquel but only rarely has it helped other members. It does have a withdrawal as well but nothing as severe as Cymbalta.

As far as the vision change, that is sometimes linked with dehydration and/or low sodium levels. Although not a scientific method, dehydration usually produces darker urine. The only true test I know of is urinalysis for the dehydration and a blood test for low sodium.

#14 invalidusername

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Posted 13 November 2019 - 08:52 AM

You are stuck inbetween a rock and a hard place here by the looks of it. You have this nasty withdrawal, but at the same time you do not want to be throwing more medication at the problem. This is the perspective of many members, and it is a wise place to be, albeit a very tough one. 

 

Like you said to me before, the biggest culprit to this is stress. Stress is something that cannot be removed by drugs. They might change your reaction to it chemically, but this would not be teaching you the right way to go about it. In a similar boat myself and I refuse to let drugs do the work that I know that I will inevitably need to combat myself. 

 

That said, there does come a point where you will gladly do anything for some relief - and this is when I mentioned the "stuff". I only speak of this as it has a residual point to your current circumstances and after what you told me, surely an rx of seroquel would be viewed in the same manner by "the family" as medicinal and ultimately end up meeting the same demise, no? As Hat said, there is a withdrawal from this which you would not get from other routes. 

 

Anyway... that is my 50 cents on the current scenario, and my continued thoughts and prayers for you brother. Stay calm and keep that stress in check... 


#15 Driven

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Posted 13 November 2019 - 06:20 PM

Guys,

 

This vision issue has gotten worse in the last week.  i have not read much in terms of people experiencing vision issues this far out from Cymbalta w/d which does have me very concerned.  I did find an article pertaining to general SSRIs and vision issues which I've posted below.  My vision issue started on day 3 after coming off and it has been with me about 99.5% of the time since then (130 days off exactly).  I've had near perfect vision prior to going off Cymbalta in July.

 

Here are the symptoms that I'm experiencing:

 

- So many new floaters that I have a hard time concentrating on my computer screen.

- When walking/moving, my eyes are slow to catch up to my movement.  Also slow to catch up to watching a car or any moving object passing by for example.  It's like my vision is in slow motion compared to the object.

- I'm having moderate difficulty with depth perception at any distance.  Talking to someone at a normal 4-6 foot distance for example is hard for me to focus on them.  I can't clearly focus on their face due to some depth perception and focus issues.

- Eyes are hurting more than normal.  The pain/pressure is more behind my eyes.  

- Difficulty seeing in low light.

- My sister in law is a physical therapist and she ran some vestibular eye tests on me.  She stated I was positive for oscillopsia, VOR tracking, and gaze stabilization dysfunction.  She could see my eyes slightly jumping when following her finger side to side instead of moving fluidly.  

My stress is also at an all-time high. I'm praying that this will heal and that my heightened stress is also a major part of what I'm experiencing. 

 

Here is the article that I read that has me concerned.  Lots of comments and I hate that I read this negative crap.  Reading that folks are still experiencing issues years later is crushing to me.  I know, don't research this stuff but I'm just trying to find answers.  My mind obsesses about the optic nerve being possibly damaged and that it can't heal like neuroplasticity of the brain.  

https://rxisk.org/ke...blems-on-ssris/

 

Praying for continued healing...I am heading back to my optometrist tomorrow to discuss.  He didn't see much last time but he was so focused on my low mood since he'd never seen me in such a funk.  He's a good family friend which is good and bad I suppose...

 

Driven


#16 fishinghat

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Posted 13 November 2019 - 06:42 PM

These symptoms and the nurse's diagnosis fit with the Cymbalta withdrawal symptoms we have seen in others EXCEPT for, as you said, the timing. This is too long. If you are still having bad withdrawal symptoms and heavy stress I guess it could still be a withdrawal symptoms but it would worry me also.

The website does not surprise me. Withdrawal from antidepressants have often been linked to eye issues and our members are no different. The good news is that I do not remember any members not fully recovering. Again, many times these changes are linked to very low sodium levels and/or dehydration. You really need to have that checked out.

If you want I can search the medical journals tomorrow for any research articles on that eye problems associated with ssri/snris.

#17 Driven

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Posted 13 November 2019 - 08:33 PM

FH,

As always, thank you for the input.  I will take any research available on this subject, as it is becoming more debilitating.  I will say that I am definitely still experiencing pretty major w/d symptoms so maybe there is still hope that it is just tied to a protracted w/d and will improve over time.  I am hydrating very well but will figure out a way to check sodium levels too. 

Yes, but in regards to the article above, There are posts about people experiencing multiple years of issues which is scary.  I'm trying not to go there but it is hard for me.  

I am officially about 10 days off the lowest dose of SAM-e that I took since going off Cymbalta so maybe that is causing the slight uptick in the last week.  I'm grasping there...but my vision has definitely gotten worse the last week or so.  I'm having slight inner ear pain in the last week as well which I haven't had since early in the w/d.  

 

Driven


#18 fishinghat

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Posted Yesterday, 09:36 AM

Just in the last 3 years 25 members have noted "vision problems".

Most common :
Blurry vision
Tunnel vision
Optic nerve pain

Most resolved in two months or less except the following...
Navywife - Some Vision problems remain (undefined) since around 2014 and to current point (5 years).
Cjmansf - Vision problems lasted 4 months.
Howtostopproperly - lasted 5 months.
Michgirl - Tunnel vision 4 months.
All of the other members had their issues to clear up in 2 months or less.

More info to follow later.

#19 fishinghat

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Posted Yesterday, 11:24 AM

I found a couple research articles that mention vision problems as a symptom of ssri withdrawal but not mentioned how long they lasted.

I also found these....

https://www.ncbi.nlm.../pubmed/8490068
Color vision deficiencies in the course of acute alcohol withdrawal.
Within the course of withdrawal, a marked improvement of these disturbances could be proved.

https://www.ncbi.nlm...pubmed/25772076
Reversible splenial lesion and complex visual disturbances due to carbamazepine withdrawal.

https://www.ncbi.nlm...pubmed/11339588
Heroin withdrawal as a possible cause of acute concomitant esotropia in adults.
(esotropia - Only one eye looks directly at the object of regard, the other being turned inwards. )
One case resolved on ots own, total of two cases.


https://www.ncbi.nlm...pubmed/26074969
A Case Report of Acute Esotropia in a Young Woman following Heroin Withdrawal.
Resolved with treatment.

https://www.ncbi.nlm.../pubmed/9023790
Impaired binocular depth inversion in patients with alcohol withdrawal.
No notes on recovery

https://www.ncbi.nlm.../pubmed/9283503
Impaired color vision in cocaine-withdrawn patients.
No notes on recovery.

https://www.ncbi.nlm...pubmed/26483678
A Case Report of Nystagmus with Acute Comitant Esotropia Secondary to Heroin Withdrawal: A Novel Presentation.
After 76 days, her esotropia resolved,

 


#20 invalidusername

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Posted Yesterday, 04:29 PM

Fantastic stuff there Hat. I assume we will make room for that in the next eBook update...

 

Only things to add would be potentially a lack in vitamin A - as this is often associated with vision issues. 

 

Have you been to an optometrist since this occurred? Floaters are bubbles that are created in the vitreous fluid between the back of the lens and the retina. The pockets that form the bubbles could be as a result of slight retina detachment. This can potentially have symptoms similar to those you list above as the light that comes through the eye and hits the retina will be warped as the edges of the retina become less convex relative to the surface of the lens. It is nothing to worry about as the procedure to re-attach is very quick and easy. Would be an outpatient visit to the ER, but must be done before it gets worse as permanent loss of vision could ensue.

 

If you ever start to loose vision in the peripherals - sort of like drapes being drawn, or you have flashes of lightening again in the peripherals when turning your head, then get to an ER pronto. That is when every minute matters.

 

I have had a lot of vision problems - as has my sister, so I could tell you a fair bit if you need to know. Sorry my reply is late... my prayers continue for you my friend.


#21 fishinghat

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Posted Today, 10:34 AM

Driven, I did a lot of looking at sam-E withdrawal. There is no med8cal research on it at all but a lot of blog/forum comments. As best as I can tell the withdrawal is similar to Cymbalta symptoms but a lot less severe. Most people noted the symptoms lasted around 2 to 4 weeks. Most of those who withdrew slowly had no to little symptoms.



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