beardsagain: My story - 20mg Fluoxetine - CT and Reinstatement

[beardsagain]

I was put on fluoxetine 20mg about 2 years ago during a dark period in my life. I had experienced depression and anxiety before in my life but always was able to manage. This dark period came at a time when I had been struggling pretty bad for a couple of years. When I say bad I was still able to function at work and all that, but it was really really hard. After years of considering I decided I’d try them as I had tried just about everything else.

 

Initially it was great. My depression started to lift. I was suicidal at the time and that started to go away. About 1 or 2 month in I started to feel much better. So much so that I decided to stop taking the medication cold turkey. I know now what a foolish move this was. The first month I felt just fine. Life was really great. I told my doctor. He expressed no concerns.

 

After about a month is when things started to change. Mainly my anxiety and insomnia started to get really bad. I thought it was just withdrawl symptoms and that they would resolve after a few months. They didn’t. In addition to that I started to get really wierd symptoms. Just weird sensations in my head and with my vision that I had never experienced before. I started to experience what is what is best described as depersonalization or disassociation. At the time I started some trauma therapy and that wasn’t helping either.

 

I just started to feel like a shell of my former self. This went on for about 2 years. During that time I thought I had everything from TBI or PCS, concussion like symptoms, CPTSD, BPD, low testosterone, chemical sensitivity, auto immune issues, celiac, inflammation and neuro inflammation. That what would come up when I googled my symptoms or spoke to a medical professional.

 

Then I found these communities and it started to make sense. I never releazed that taking such a low dose of an SSRI for a short time could cause such chaos. Quitting cold turkey was a dumb move on my part for sure, but I thought since it only had been 3 months and at the lowest dose of 20mg it wouldn’t be that bad. Boy was I wrong. The last two years, I have been a completely different person. My sleep was completely destroyed. I was tired and irritable all the time. No libido what so ever. I was just sensitive to everything. A word or a look from anyone would drive my crazy. I was scared of everything.

 

Some how I managed to get to work everyday and perform my duties but it was hard. I couldn’t look at the screen for more than a few dozen minutes at a time without getting a weird headache that felt like something was crawling around in my brain. My eyes would start to hurt. Exercise was really, really hard. I couldn’t read. Even books would cause a huge headache. If I turned my head a certain way or tried to look out of the corner of my eye, I would get a headache and be totally exhausted from it.

 

Like I said somehow I survived these few years. I managed to make new friends, I bought a new home and started to live on my own. I tried new hobbies, pass times. But it was hard. I didn’t enjoy anything.

 

Things started to change once I started to take supplements. Longvida, fish oils, magnesium. But it was all still really hard. After a while I decided to go back on the fluoxetine. It had been two years, and I was exhausted. The symptoms got much better as a result. I started to sleep better, my mood improved. Strangley my libido is back. I can think clearer. I can read now, and perform better at work. It’s not perfect and I still feel far from my normal self but much better than I was before.

 

Once this happen I started to do more research and realized that the issue was the CT of my SSRI a few years ago. The symptoms just matched up perfectly. All the other medical conditions had some alignment with my symptoms but they didn’t add up. BPD? Why now? I’ve never had it before. TBI? From what? Minor bumps to the head? It just didn’t make sense. But being on these websites and reading peoples experiences, its like a light went off. It all started to make sense.

 

So now I don’t know what to do. My symptoms have abated since reinstating 20mg of fluoxetine. I am still very new to these communities so I am trying to educate myself. I want to taper badly but not sure when to start. I am also worried about permanent damage that I have done to myself by stopping cold turkey so long ago.

 

I feel much better since the reinstatement but I am still not 100% I would say I am at 75% to 80% up from 20% to 30% for two years. I find also now that I can’t miss a dose. Back when I first started taking it, I could miss a day or two and not feel anything. Now if I am late taking my dose the following day I start to feel these terrible symptoms come back.

 

My basic plan right now is to keep taking the medication and track my progress. Eventually I want to start a taper a slow as possible. I am thinking like 1mg and waiting and seeing how it affects me. Holding at 1mg reduction for about 4 weeks. If all is good then another 1mg for 4 weeks and so one. I want to take it a slow as possible to allow my body to adapt.

 

Any advice or feed back would be much appreciated.

[Gridley]

Welcome to SA, beardsagain.  I'm glad you're feeling better.

 

I'm going to give you some information that will be helpful in terms of deciding whether to taper, how to taper and the nature of withdrawal.

First of all, the damage is not permanent.  The brain has a remarkable ability to heal, known as neuroplasticity.  You will be fine.  You already know this, but just to emphasize: it is never a good idea to skip doses.

 

We recommend tapering by no more than 10% of current dose every four weeks.  Dropping 1mg every four weeks works fine at the beginning of a taper, but you can see that when you start getting to the lower doses, a 1mg reduction will start to exceed 10%.  This link explains the basic 10% taper.

 

Why taper by 10% of my dosage?

 

The Brassmonkey Slide is a way of making micro-taper reductions weekly, as opposed to a larger reduction once a month. 

 

The Brassmonkey Slide Method of Micro-tapering

 

A micro-taper is the gentlest way to come off these drugs. 

 

Micro-taper instead of 10% or 5% decreases

 

This link is specifically about tapering fluoxetine.

 

Tips for tapering off Prozac (fluoxetine)

 

These links will help you understand what you experienced in withdrawal.  Unfortunately, doctors have no knowledge of withdrawal or the necessity of slow tapering.  

 

What is withdrawal syndrome.

 

Glenmullen’s withdrawal symptom list.

 

This is your Introduction topic, where you can ask questions and connect with other members.  We're glad you found your way here.

 

 

 

 

 

 

[beardsagain]

So a bit of an update.

 

Generally been feeling a bit better but still not 100%. I suppose its been about 5 months since I re-instated 20mg fluoxetine. Also I forgot to mention this but about a few months before I re-instated the fluoxetine, I asked my doctor to put me on 50mg of trazodone, after doing some research and hearing from a friend about the success they had with it helping their insomnia. The biggest problem I had in the 2 years after I CT'd was sleep and terrible insomnia. My doctor had been pushing various benzos to help with my sleep but I was reluctant to take them. After some researched it seemed a low dose would be a safer option and less addicting. Not sure how correct I was or if this was a good idea but I did experience some short term relief of my symptoms and a return of my libido. But ultimately those results were short lived and I decided to go back on the fluoxetine. If I had known that I was in a protracted withdrawal I would have done none of this and just rode it out.

 

Anyways so I've been on the fluoxetine for about 5 month and the trazodone for about 7 months. My main question now is ....

 

How do you know when it's time to taper?

 

I know that reinstating is always a gamble from my research. Sometimes it works and sometimes it doesn't. Sometimes it makes things worse. I've read that the longer you wait, the less chance it has of working. Well it seemed to have worked for me. I wouldn't say I am stabilized but I am better than I was before. Like I said before I am able to do better at work. I can look at screen and read for longer than I was able to before, although there is a limit before my brain goes all weird with the headaches, fog and brain zaps. My mood is more stable. I can deal with emotions slightly better. I am generally less sensitive to everything. I can sleep somewhat better also.

 

So is the goal to get to 100% functioning or stabilization before tapering? Should I consult a doctor?

 

I was prescribed these meds by my GP who I have grown to mistrust. In the two years of my withdrawal he never had a clue what was going on with me. He didn't advise me to go back on the medication after I CT'd. When I tell him that I think I was in withdrawal for two years he dismisses me and gets upset.

 

I am looking at getting a psychiatrist. A good one. I have a couple recommendations from my therapist. I would like to get one but I am worried they are just going to put me on a medication carousel, and I am reluctant to up-dose or switch to other medications. 

 

Generally I feel like I am as stable as I am going to get on these medications. In the last couple of months I have noticed more numbness. I feel more emotionally blunted. Also I have experienced some agitation and restlenesses. A lot more lethargy and tiredness. Just more of complete lack of energy which is frustrating. I really tired after going for a short walk and I find myself out of breath more often. I don't know if this is just due to my lack of exercise due to the winter or if it's the meds. Generally I have been really sensitive to exercise since I CT'd which took me a while to realize. Exercise was the main thing that I used to pull myself out of depressions before and now it was making me to activated and stressed that I couldn't sleep for a couple days. I responded to this by stepping up my work outs. I started some pretty intense martial arts training which was really aggressive. I know now that my CNS was in no state to handle that kind of load and after a year I stopped. I wonder how much damage I did during that time.

 

Anyways I am thinking that I will try to find a doctor who is more supportive of this kind of slow taper and familiar with this medication and withdrawal as well. What I would like to do is start a slow taper down to 10mg. I would do 5% at time and holding for a month until I am at half my dose.

 

Thanks for listening to my ramblings. Any advice would be much appreciated.

 

Grateful for this community.

[Gridley]

10 hours ago, beardsagain said:

 

So is the goal to get to 100% functioning or stabilization before tapering? Should I consult a doctor?

 

As I said, the vast majority of doctors, including psychiatrists, know nothing about safe tapering or withdrawal. If you want a doctor, that's your choice.

 

It is good to be stable when beginning a taper, but 100% stabilization is often an unrealistic goal.  Stable means not the total absence of symptoms but rather the symptoms are tolerable and more or less the same every day without big swings.  From what you've described it sounds as if you're in that condition.

 

 

 

[beardsagain]

Thanks for your support.

 

In your experience does my story sound plausible?

 

The part I have a hard time wrapping my head around is the fact that I was initially on the fluoxetine for such a short time, just under 3 months, and that stopping cold turkey could produce two years of protracted withdrawals/discontinuation syndrome. Most stories I hear are from people who have been on these drugs for many years. I haven't come across anyone who has experienced what I experienced after such a short time on the medication, at least no yet.

 

That being said I can't seem to find a better explanation for how I felt during that time.

[beardsagain]

Hi There, @Gridley or anyone else for that matter.

 

Just a friendly follow up on my above post/question.

[Kronos18]

On 1/26/2020 at 8:06 PM, beardsagain said:

Thanks for your support.

 

In your experience does my story sound plausible?

 

The part I have a hard time wrapping my head around is the fact that I was initially on the fluoxetine for such a short time, just under 3 months, and that stopping cold turkey could produce two years of protracted withdrawals/discontinuation syndrome. Most stories I hear are from people who have been on these drugs for many years. I haven't come across anyone who has experienced what I experienced after such a short time on the medication, at least no yet.

 

That being said I can't seem to find a better explanation for how I felt during that time.

Hello.Reading your story, I find myself exactly in the same place.Long story short, i took Lorazepam for 2 weeks and Lexapro for 2 months, and here I am, 12 months later having a lot of withdrawal symptoms, including severe anxiety(it got better somehow, not having it all say like before), weakness, diziness, swaying feeling, depersonalization, PTSD symptoms, muscle tightness and pain, visual snow, floaters, disorted vision and many more.You are not alone.

[beardsagain]

Thanks for sharing Kronos. What you're describing reminds me of how I felt in the two years after I CT'd from Prozac before reinstating.

 

Update on me. Its been about 6 month now since I have reinstated the fluoxetine. I've been feeling more emotionally numb lately. Just feeling drugged up and sedated. The volume of the voice in my head has been turned down way low, and I have a hard time thinking. I've tried switching my dosing time from the morning to evening as suggested by my doctor, but that did not help. It messed up my sleep and I started having terrible nightmare. This is the longest I've been on these drugs and I feel like its just too strong for me. I know the effects of these drugs build up over time.

 

I've been looking for a psychiatrist and also putting together a taper scheduled. I am thinking about doing the brassmokey slide with a %5 taper rate and a one month hold instead of the typical 2 week hold. Just want to be as gentle as possible.

[beardsagain]

So I've been trying emptying my fluoxetine capsules in water the past week or so. Full dose. I wanted to see how dissolving the powder in water would affect me. I do notice a difference. Has anyone else experienced this?

 

I find when I take it this way I feel less of an effect. I don't know it just seems not as strong as when I take the capsule regularly. Again I am not removing anything from the liquid.

 

I was thinking may be the medicine is degraded a bit. Or maybe that I am taking slightly less as there is some residue that ends up on the glass.

[beardsagain]

Hi Everyone, just a friendly follow up to my above question?

[beardsagain]

Hi all any insights would be much appreciated.

 

I have decided to take the next 6 weeks to transition myself to the water mixture, since I am noticing a difference.

 

So far I notice I have more headaches and head pressure, but I feel clearer headed.

 

Only thing I can attribute this to since I haven't reduced any dosage, is either degradation in the liquid, small amounts of the medicine being lost when I open the capsules or ends up as residue on the side of the glass (although I try my best to get all of the residue).

 

PS. The liquid tastes awful and makes my lips numb.

[beardsagain]

So day 5 for me taking fluoxetine liquid. I feel less drugged out and numb which has been nice. Headaches have died down for now. I initally thought that the reasons for the change in the way I was  feeling was due to inadvertant dosage reduction via liquid degredation or residue leftover. I now think its just an increase of the drugs effectiveness due to the fact its hitting me quicker or harder via the liquid after reading some of the relevant threads on here.

 

Sleep isnt the greatest right now but I think thats because of how busy I am at work and also some triggering family interactions.

 

Today I am feeling pretty exhausted and depressed.

[beardsagain]

Hi All,

 

I've been taking the fluoxetine liquid for the past 6 weeks and so far so good. In that time I have also gone on an elimination diet (carnivore) with good results as well. I am planning on making my first cut this coming Sunday. I plan on starting really slow. 2.5% reduction over 4 weeks using the Brassmonkey slide, and the holding for two weeks. So at the end of the taper I would be down to 19.5mg from 20. I know this is really slow but I want to be as careful as possible given my history with CT in the past. 

 

Any thoughts or insights would be much appreciated.

 

Thanks!