GonnaBeOk: protracted Prozac withdrawal horrible

[GonnaBeOk]

I'm new here. I began a (too fast) taper of 40 mg Prozac at the end of January 2018. Had been on for many years (at least 10+).  As a sidenote, I also have Lyme disease which muddies the waters of symptoms and will explain why I didn't catch that I was declining once I started tapering.

 

In looking back at texts I was writing to friends at the time, it is (now) clear to me that I was declining mentally very soon after I reduced the dose of Prozac, but I was attributing it to Lyme disease (not discontinuation of the drug), so I never connected the dots.  I started reducing Prozac end of January 2018, and took my last dose end of April 2018 because "it's easy to come off of."  During that time, my mental health declined rapidly and my sleep became awful. Again, I attributed these symptoms to Lyme and not discontinuation of the Prozac--it didn't even cross my mind.   I finally connected the dots in December 2018, but had stopped the Prozac way back in April 2018.                                                                                       

 

I still sleep only about 2 hours per night for the last 6 months and it's horrible. I used to sleep 7-8 easily before all of this. I've tried everything for sleep and nothing works, both Rx and natural. It scares me.My personality has changed, and I feel on the verge of cracking very soon.

 

In August 2018 my doc put me on Lexapro, but after 3 weeks on it I felt like it made me more anxious, so I tapered over a couple weeks and went off it.  I also tried Ambien several times (maybe 8 tablets total) from maybe Sept to November to sleep and it gives me suicidal thoughts upon waking, and never gave me much help--maybe 3 hours tops, but often just one hour of sleep.  Tried the Ambien CR, and that gave me suicidal thoughts as well and never many hours of sleep.  Mid-Novemember a doc put me on Ativan for sleep, but I hate benzos, so I took only a total of 7   .5mg tablets over a 12 day period and stopped. It always gave me at least 7 or 8 hours of sleep, but I was not willing to stay on it (addictive), and it exacerbates my depression as well.  Also in November I tried (for 6 days) Remeron for sleep, (7.5 mg), but it didn't help and I didn't want to stay on it, so I tapered over a couple weeks and stopped. Tapering instructions of all these drugs was given by my medical providers, so none of the tapers were probably anywhere close to what I should have done.  When I was done with this conglomeration of short-use drugs from August- November 2018, I felt like my brain was fried. I used to be a funny, silly, hilarious, fun loving person. I've become horribly depressed, anxious, and withdrawn....and often have thoughts of suicide that I cannot get out of my mind. I also am pretty convinced that my brain cannot handle psych drugs at all anymore. It's too sensitive and does not seem to rebound. I seem to be especially sensitive to benzos and the sleep meds. I am terrified to ever use another psych drug.

 

I'll add: in 2014 (while on Prozac) I went through heavy anxiety, so was referred to a psychiatrist who (from July through December 2014) put me on a slew of different antidepressants and antipsychotics-(-introducing one, while withdrawing another), none of which worked, but it ended with clonazepam. I was on a small dose of .25-.50 mg intermittently over a few (maybe 3) months, put on too fast a taper, and went through HELL withdrawal. I was bedridden for at least 6 months, and still had symptoms up until I started coming off of Prozac last January 2018. What a mess.  So this is my second time in 4 years of going through withdrawals from psych drugs, and I was never completely through with my first withdrawal episode (but was improving very very slowly).

 

I am not taking any drugs right now, BUT I am a horrid mess.  Not sleeping AT ALL (unless 2 hours per night counts as sleep); severe severe severe depression, depersonalization, feeling like I need to jump off a bridge all the time; I've become very angry and combative; I have hardly left the house in 6 months.  I have tingling and numbness all over my body and face, panic attacks often, heavy heart palpitations, my brain often feels damaged, and suicidal thoughts are ever present in my mind. I also have difficulty breathing often--like labored breathing. My anxiety is off the charts constantly. My symptoms do not wax and wane--they are always there 24/7 and never subside. And obviously I cry a lot. I grieve the full life I used to have.  I have a hard time taking care of myself: showering, eating, etc, but I manage to make it thru. I am 5 feet 1, and down to about 89 lbs (from probably 112). It's rough!!

 

Any advice for me? I feel hopeless and un-fixable.  I can't imagine that re-instating Prozac would help at all at this point, since it's been so long. What do you think?

 Feeling very very discouraged.

 

 

[Shep]

Hi, GonnaBeOk. 

 

Welcome to Surviving Antidepressants.

 

On 1/2/2019 at 2:04 PM, GonnaBeOk said:

still sleep only about 2 hours per night for the last 6 months and it's horrible. I used to sleep 7-8 easily before all of this. I've tried everything for sleep and nothing works, both Rx and natural. It scares me.My personality has changed, and I feel on the verge of cracking very soon.

 

Please let us now what you tried, both Rx and natural. Please list the start and stop dates and the doses you took.

 

On 1/2/2019 at 2:04 PM, GonnaBeOk said:

 I can't imagine that re-instating Prozac would help at all at this point, since it's been so long. What do you think?

 

Yes, it may be difficult to reinstate at this late stage. I'm going to give you the link on reinstatement so you can be familiar with how we approach reinstatements here on SA. And I'll ask the moderators who are more familiar with Prozac to guide you should this turn out to be an option. 

 

About reinstating and stabilizing to reduce withdrawal symptoms

 

For more information on withdrawal, please see:

 

How psychiatric drugs remodel your brain

 

Healing from antidepressants. Patterns of recovery video (4 minutes)

 

The Windows and Waves Pattern of Stabilization

 

You may find some helpful information to handle your symptoms here: 

 

Non-drug techniques to cope with emotional symptoms

  

 We don't recommend a lot of supplements, as many members report their nervous systems are simply too fragile to handle them. However, magnesium and fish oil tend to be calming to the nervous system and many people report they do help. Please only add in one supplement at a time and at a small dose. For more, please see:

 

 King of supplements: Omega-3 fatty acids (fish oil)

 

Magnesium, nature's calcium channel blocker

 

Please add a signature.  Include drugs, doses, dates, and discontinuations & reinstatements in the last 12-24 months. Also include supplements. This will help us give you the most accurate advice we can. 

•  Any drugs and supplements prior to 24 months ago can just be listed with start and stop years. 
• Please use actual dates or approximate dates (mid-June, Late October) rather than relative time frames (last week, 3 months ago) 
• Spell out months, e.g. "October" or "Oct."; 9/1/2016 can be interpreted as Jan. 9, 2016 or Sept. 1, 2016. 
• Please leave out symptoms and diagnoses. 
• A list is easier to understand than one or multiple paragraphs. 
• This is a direct link to your signature:  Account Settings – Create or Edit a signature.

 

Please use this thread to document your taper and to ask plenty of questions. As you provide more information, we can better guide you going forward. 

 

Please also let us now what kind of treatment you've had for Lyme and if you're on any medication for that, as well. 

 

Edited February 6, 2019 by Shep
name change

[Altostrata]

Welcome,

It's possible a low-dose reinstatement would help. I might try 0.5mg Prozac to start, take every day in the morning. Please let us know how you're doing.

 

Prozac comes in a prescription liquid for titration or you can make your own, this topic explains how Tips for tapering off Prozac (fluoxetine)

 

Edited February 6, 2019 by ChessieCat
name change

[GonnaBeOk]

Shep and Alto,

 

I (think) I updated my drug signature, but it's not showing. Maybe it needs approval before posting. Waiting to hear back from my doc about getting some liquid Prozac to try re-instatement. Feeling nervous about that, but not sure if it's possible to feel any worse than I do now.

 

[ChessieCat]

No, your drug signature is not showing up.  You have to make sure you click Save when you have finished creating it.  I think it's at the bottom of the box where you type the information in.

[GonnaBeOk]

😭😭😭 Well, darn. I spent a loooong time on that. I'll try again later. Thank you ChessieCat.

[Sadboy]

Mate look into the keto diet for lyme disease. It also helped me tremendously during withdrawal. Greets

[ChessieCat]

6 hours ago, Sadboy said:

Mate look into the keto diet for lyme disease. It also helped me tremendously during withdrawal. Greets

 

Please research anything before trying it.  People can respond differently to things that work for others.  diets-that-may-cause-problems-restriction-ketosis-raw-low-carb

 

5 hours ago, BB1979 said:

And read the success stories often

 

 

Success stories: Recovery from withdrawal

[GonnaBeOk]

Still waiting to hear back from doc re liquid Prozac. 

 

Question: I have *no* windows of improvement (yet) since coming off too quickly from Prozac. It’s just 24/7 almost unbearable hell for over 6 months now. No relief ever. Is this normal for my situation?  I always feel like I’m ready to jump off a bridge, among other horrible symptoms. 

 

I’ll update drug signature soon. 

[ChessieCat]

On 1/6/2019 at 9:59 PM, GonnaBeOk said:

Well, darn. I spent a loooong time on that.

 

I know how frustrating it is.  I have had this happen several times after typing out a long, tailored and very detailed response to a member.

 

On 1/7/2019 at 6:13 PM, GonnaBeOk said:

Still waiting to hear back from doc re liquid Prozac. 

 

 

Do you have any Prozac tablets?  You could make your own Prozac liquid with water until you can get the liquid Prozac.

 

Tips for tapering off Prozac (fluoxetine)

Edited February 6, 2019 by Shep
name change

[GonnaBeOk]

Ok, I updated my signature. My doc said he is not comfortable giving me liquid Prozac at this time (or any other psych drugs--I"m sure because of my horrible withdrawal).  It HAS been a long time since my last dose of Prozac. Still debating whether to pursue re-instatement of Prozac.

[GonnaBeOk]

I've been off Prozac since end April 2018 and am debating whether or not to re-instate at .5mg due to continued horrific withdrawals. Anyone have any successful re-instatement stories after being off drugs for many months? My doc will not prescribe the liquid. Or any more Prozac. I'm wondering if I should just take that as my "answer." I do know there is a risk of getting worse (I can't imagine worse than this) with a re-instatement.

[ChessieCat]

did-antidepressant-reinstatement-work-for-you

 

On 1/11/2019 at 8:02 PM, GonnaBeOk said:

My doc will not prescribe the liquid. Or any more Prozac.

 

You don't need to get the liquid.  You can make your own liquid from tablets.

 

Just tell the doctor that you think you need to go back on Prozac.  Doctors are usually quite happy to provide you with a prescription.  You don't need to tell them that you are only going to take a small dose.  Let them think you are going back on the dose they prescribe.

 

How do you talk to a doctor about tapering and withdrawal?

What should I expect from my doctor about withdrawal symptoms?

Edited February 6, 2019 by Shep
name change

[GonnaBeOk]

I emailed Dr. Shipko and briefly shared my plight. Here’s his response. Any thoughts? I have not yet re-instated, but have appt with my doc this week to discuss liquid Prozac. I just fear that reinstatement at this point might make things worse; that this is irreversible (I’m barely even a shell of who I was before); that things will get worse if I re-instate. BUT: my sleep has been having windows of “better.” Not great; not even good, but better. Instead of consistent 2 hours only, I’m getting 4,5, and 6+ hrs (broken up, but still...). Is this a sign of healing even though I am out of my mind with all the other symptoms with no relief, ever? Most notably the anxiety and BLACK depression. 

[ChessieCat]

Shipko is thinking in terms of "therapeutic dose".  Therapeutic dose is an arbitrary term (based on random choice or personal whim, rather than any reason or system) which pharmaceutical companies use - think $$$.  The doctors get this information from the pharma reps.

 

SA prefers to use the term "lowest effective dose".  It is important to understand that changing drugs and doses multiple times has a cumulative effect and your nervous system can become sensitised.   We also suggest increasing by small amounts if necessary.  It is better to increase by small amounts than to risk taking too much.  If you take too much you might end up even worse.

 

However, starting at 0.5mg sounds reasonable.  I will ask the other mods for their thoughts on when and by how much to increase.

 

Please read Post #1 of this topic: 

 

About reinstating and stabilizing to reduce withdrawal symptoms

 

Please keep daily symptom notes on paper.

 

Example:

 

6 a.m. Woke with anxiety
8 a.m. Took 2.5mg Lexapro
10 a.m. Stomach is upset
10:30 a.m. Ate breakfast
11:35 a.m. Got a headache, lasted one hour
12:35 p.m. Ate lunch
4 p.m. Feel a bit better
5 p.m. Took 2.5mg Lexapro
6 p.m. Ate dinner
9:20 p.m. Headache
10:00 p.m. Took 50mg Seroquel
10:20 p.m. Feeling dizzy
10:30 p.m. Fell asleep
2:30 a.m. Woke, took 3mg Ambien (NOT "took 1/2 tablet Ambien")
2:45 a.m. Fell asleep
4:30 a.m. Woke but got back to sleep

[GonnaBeOk]

Thank you @ChessieCat. I should add that I suggested the 0.5 starting dose with him, and that I had been in the SA site looking for suggestions. @Altostrata had recommended that as possible starting point for reinstatement. 

[ChessieCat]

On 1/18/2019 at 6:54 PM, GonnaBeOk said:

I should add that I suggested the 0.5 starting dose with him

 

Did he make a suggestion before you mentioned this?  If yes, what dose?

[GonnaBeOk]

No he did not make a suggestion regarding starting dose. I told him 0.5 was recommended to me and he then said that sounds “safe.” 😬

[GonnaBeOk]

He also said that he has seen successful reinstatements as far out as two years. As well as unsuccessful ones in as little as 2 months. So it’s a crapshoot., which I realize. 

[thecowisback]

following this post for advice on how and when to increase the reinstatement dose.

[Altostrata]

It depends on the effect of 0.5mg Prozac. If you find 0.5mg Prozac helpful, we suggest observing for a month before making any increase. More is not necessarily better, as it can trigger kindling in sensitive nervous systems.

 

However, 0.5mg Prozac is a very low dose. If you feel you need more than 0.5mg, we suggest increasing by very small amounts, perhaps 0.25mg--0.5mg at a time, to find the lowest effective dose to reduce withdrawal symptoms. Since Prozac has such a long half-life, the effect will ramp up over a couple of weeks, so you don't want to go too fast in increases, overshoot, and get kindled. We have a bunch of people here who have done that.

 

We're all about trying very small changes and seeing what happens before making another change. With Prozac, this observation period is at least a couple of weeks. For best results, you need to be patient and keep notes while you're doing this. Improvement will be gradual, we don't promise any miracles.

 

I doubt you'll need 10mg or 20mg, but some people have found they need to updose to a "normal" dose -- that's possible, too.

[thecowisback]

if at any point the initial dose or further increased doses cause a reaction do you need to taper off that dose slowly?

[thecowisback]

also if you reinstate a small dose does it put your brain healing on hold until you taper off again??

[GonnaBeOk]

@Altostrata Thank you for taking time to respond to us on SA. It’s so very much appreciated. 

 

I got liquid Prozac yesterday. Still nervous (9 months out from Rapid taper/CT). Thinking of trying 0.5 mg tomorrow morning.  If I slowly titrate up, and then decide later I need to quit , how do I accurately taper off? I have proper syringe, but not sure I understand how to reduce at 5 or 10% increments since there’s just tick marks on syringe. I understand how to do the math, but since it’s not a scale, it is not  as accurate I assume. 

[ChessieCat]

Where to get oral syringes

[Gato123]

Sorry to hear you're struggling so much--would you please keep this site updated as you reinstate? I am in a similar position as you and have been on the fence about what to do... Thank you and hoping your reinstatement goes well. 

 

Edited February 6, 2019 by ChessieCat
name change

[GonnaBeOk]

Thank you @ChessieCatbut I guess more specifically: when I start reducing at some point, how do I navigate the “decimal point” numbers if I’m only using a syringe with hash marks? Round up or down? It just doesn’t seem like it would be really accurate. 

[ChessieCat]

I suggest that you do some research on the syringes because there may be better options available that you aren't aware of.

 

You can dilute with water to make a weaker solution which means that you would measure out a larger amount.

 

If the dose amount is a difficult number to measure you round up, not down.

[GonnaBeOk]

I have not yet reinstated Prozac, but am considering due to awful symptoms constantly. However, my sleep is improving a bit (although not like my “old” sleep used to be. It’s very broken with lots of dreams, not deep, and varies from  4-7 combined hours). 

 

Question: is it ok to reinstate Prozac (at miniscule doses, gradually) if one has akathesia? I know Prozac is an “activating” SSRI. I’m assuming many members here have akathesia to varying degrees, and  have tried a Prozac reinstatement (?).  My akathesia is internal, mostly: Agitation, inner restlessness, feeling like I will go crazy and jump out of my skin at times. @ChessieCat @Altostrata Thank you for any feedback. 

[Altostrata]

Good to hear your sleep is improving, GBO. This is a good sign.

 

Before trying a reinstatement, which may aggravate those akathisia feelings, you may wish to improve your sleep with

 

Tips to help sleep -- so many of us have that awful withdrawal insomnia

 

Melatonin for sleep: Many people find it helpful

 

TV or computer use in evening can disrupt sleep: Bright light signals the brain that it's daytime

Music for self-care: Calms hyperalertness, anxiety, aids relaxation and sleep

 

If these techniques help, you may not need to reinstate. Sleep is healing and will put you on the path to recovery. Be sure to avoid stress!

[Gato123]

Hi @GonnaBeOk did you end up reinstating? How are you? 

[bheb]

Hello gonna be ok,

 

I’ve got akathisia too and I find melatonin helps with sleep. Typically we need a much lower dose than what you can find in the drug store. I take 1mg.

 

im sorry you’re struggling with this symptom. It’s awful. Hang in there 

[GonnaBeOk]

Thank you @Altostrata. I implement all those sleep strategies, including milk peptides. Ironically, last 2 nights of sleep have been poor 😕, but I know it ebbs and flows. 

@Gato123 Unforunately, I’m doing horribly. But it’s been that way for almost a year. Barely functional,extreme panic, akathesia, agoraphobic, severe depression. NOT me at all. So scary. I have not yet reinstated. 

@bheb Thank you. I also take 1 mg melatonin. 

[bheb]

Gotcha, so sorry you're having a rough time. I often don't feel like myself either -- all my energy is gone, spent battling the agitation and restlessness. Been dealing with these same symptoms for a while too, sometimes I will look at myself and my life with utter shock at what I'm coping with. There's no peace. But I try not to dwell on it as much as possible and stay super distracted and practice being grateful for any moment that isn't awful. Hope you get some kind of semblance of a window soon.

[Altostrata]

6 hours ago, GonnaBeOk said:

Thank you @Altostrata. I implement all those sleep strategies, including milk peptides. Ironically, last 2 nights of sleep have been poor 😕, but I know it ebbs and flows. 

@Gato123 Unforunately, I’m doing horribly. But it’s been that way for almost a year. Barely functional,extreme panic, akathesia, agoraphobic, severe depression. NOT me at all. So scary. I have not yet reinstated. 

@bheb Thank you. I also take 1 mg melatonin. 

 

You may wish to keep notes. Progress towards better sleep may be up and down might not be apparent until you look back a couple of weeks. Gradually, you should sleep more consistently.

[GonnaBeOk]

Is it common to have labored breathing in protracted withdrawal? Like, feeling winded without having extended any effort? Would this be due to CNS issues? It’s not a new symptom for me, but has  always been present since WD. Should this go away in time? Still considering reinstatement as alllll my symptoms are brutal and intolerable.