Fosca: fluoxetine hypersensitivity - please advise

[Fosca]

Hello everyone,

 

I'm urgently seeking advice on my current situation, which is scary, unfortunate, and a complete mess.  I'm a 30 year old female who has been on-and-off fluoxetine (20-40 mg) for depression and anxiety over the past 13 years.  Due to personal instability, I was constantly moving around and seeing new providers.  A cycle began where I would discontinue and within 4-6 months be put back on the drug due to a "recurrent episode."  I now believe that these recurrent episodes were in fact withdrawal symptoms.  I knew nothing about the long-term effects of the drug, and how these periods of discontinuation and reinstatement were priming me for hypersensitivity.

 

The last time I discontinued the drug (fluoxetine 20mg), I noticed within 2 months that I could no longer tolerate, even at a very small dose, another drug that I had previously tolerated (spironolactone).  That was the first sign that something was amiss.  4 months after discontinuing, due to severe distress and anguish, I decided to go back on fluoxetine.  I started 10 mg fluoxetine for 12 days.  I had some headaches, which was typical for me, but I also noticed some other physical side effects - like dizziness and just "feeling off" - which I thought was odd.  I wasn't sure what was causing it, so I ceased the fluoxetine.  2.5 weeks after stopping, the physical side effects abated, and I was back to feeling normal.  Then, 3 weeks after stopping, I had a huge emotional breakdown -- screaming, crying, urges to self-harm.  I decided that I needed to re-start the drug immediately.  I began taking the 10 mg fluoxetine again, and started having intense side effects from it that I had never had before.  I didn't realize it at the time, but this was kindling.  I figured I would stabilize on that dose, so I continued.  While some of my side effects partially stabilized, I was still having issues, when all of a sudden a new side effect emerged at 3.5 weeks -- what appeared to be neurogenic bladder.  I went to a doctor and they told me I needed to stop taking fluoxetine.  With one skipped dose, the issue immediately resolved.  I then went through an absolutely hellish 25 day withdrawal unlike anything I have ever experienced.  The headaches and neck pain were so severe, and the insomnia so intense, that out of desperation I tried to re-instate at a low dose - approx. 2.5 mg one day, and 1.25 mg the next.  This didn't seem to help, but make things worse, so I stopped.  However, I'm now 4 days past the botched re-instatement, and I can tell it has had some improvement.  The headaches have stopped, but now I am in almost a hypo-manic, jittery state from the increased dose.

 

I'm at a loss as to what the next step should be, and my current provider is no help.  Now that I've come to this website, I've realized all the errors I have made.  I believe I have basically kindled twice, and I can tell that I have become extremely hyper-sensitive to the drug.  At this point, is my nervous system so shot that I need to just give up on the fluoxetine and try to survive the second withdrawal?  The only other option I can think of is to try to stabilize on a lower dose -- try taking 0.1 mg? 0.5 mg? -- but I'm not sure if that's feasible given my sensitivity and fluoxetine's long half-life, which will make the levels fluctuate in my blood for awhile before becoming consistent.

 

I'm very scared, and none of the doctors or psychiatrists I've talked to understand what has happened.  I'm honestly afraid that I might have a seizure and not survive this.

 

 

[Fosca]

Hi,

I know my post hasn't been approved, and it's a little atypical of the others on this site, but if a mod could even message me / talk to me privately, that would be appreciated.

 

[getofflex]

Hello, and welcome to SA.  We are a volunteer-run community of people who have been or are getting off of psychiatric drugs.  You have come to the right place.  I think your self assessment is probably correct - your episodes were probably withdrawal from the Prozac, and you probably kindled from going on and off the drug repeatedly.  Now, it sounds as if your nervous system is sensitized, and cannot handle the Prozac, except perhaps in very low doses.  More on this later.  

 

Thanks for giving us your drug signature.  

 

Here is some information about how these drugs actually work.   This explains why we get symptoms from going off of these medications, and why it's so important to taper slowly and carefully, and be very cautious about changing our doses: 

 

How Psychiatric Drugs Remodel Your Brain

 

 

This helps you understand what withdrawal syndrome is: 

 

Video on Recovery from Psych Drugs

 

Windows and Waves Pattern of Stabilization

 

Here is some information about kindling and hypersensitivity.  Be assured that you can heal from this, given lots of time and self care.  

 

Kindling and Hypersensitivity

 

Here is a link with checklists of common WD symptoms: 

 

Dr Joseph Glenmullen Withdrawal Symptom Checklists

 

 

Here are some techniques to cope with symptoms: 

 

Non Drug Ways to Cope with Withdrawal Symptoms

 

 

We don't suggest many supplements, but 2 that many of us find helpful are magnesium and omega-3 fish oil. Here are the links for info about those. It is suggested to add one at a time, and start with a low dose to see how it affects you. 

Magnesium

Omega 3 Fish Oil

 

How long have you been taking 0.5 mg?  How are you feeling, now that you are on the 0.5 mg dose?  Have you felt any improvement yet?  We call this a reinstatement.  You may tolerate the 0.5 mg dose, and this may very well help you with the withdrawal symptoms.  It takes about a week for a reinstatement to get in your system and register with your brain.  It is important to take the very same dose (0.5) each and every day, no skipping or varying doses, at the same time of the day.  Stability is really important when we are tapering off psych meds.  Please read the links about stability and reinstating: 

 

Keep It Simple, Slow, and Stable

 

About Reinstating and Stabilizing to Reduce Withdrawal Symptoms

 

I've given you quite a bit of information here.  Please read through it, and mull it over, and we will take it from there. In the meantime, take care of yourself, and take heart.  We in this forum have been through this, and we understand first hand the pain and discomfort you are going through.  Please know that the brain is amazing in it's healing abilities.  It takes time, but healing can and will happen. 

Edited March 8, 2022 by getofflex

[Fosca]

@getofflex

 

Hi, thank you for the links!  I've already perused a decent amount of posts on this site, but I will review them again more carefully, as well as the stuff you sent that I haven't seen.

 

I decided to quit the 0.5 mg reinstatement.  I know that is far from ideal, but I really don't know what to do given what a disaster this situation has been.  The 0.5 mg was definitely not helping -- I could literally feel it burning through my system when it reached peak plasma concentration 6-8 hours after taking it.  I'm so sensitive to the drug that any fluctuation, up or down, seems to upset my system.  I can't tolerate the side effects from taking it, and I can't tolerate the withdrawal symptoms from not taking it.  The only time I feel ok is when I've stopped taking it for a few days, so the side effects have abated, but the withdrawal symptoms haven't yet kicked in.  It seems that I can't tolerate any dose -- maybe something like 0.01 mg?, but I'm not sure how I would even properly measure that.  And I stopped taking the 0.5 mg two days ago, so I think more damage would be done if I tried taking anything again.  It seems to me that at this point I need to just leave the drug alone and let things take their course 😔.  Please let me know if you think otherwise, or if you have any other advice, that would be appreciated.

 

I'm kicking myself for trying to reinstate the drug -- logically it didn't make sense, for a variety of reasons that probably aren't worth listing all out.  Unfortunately, I was not thinking straight at the time due to the withdrawal.  If I had risked it, it should have been with something like 0.1 mg, but I didn't have liquid fluoxetine or a syringe with stopper at the time.  I guess I now need to just pray that I can eventually heal and stabilize over time with the drug out of my system.

 

I've read enough at this point to know how bad my situation is.  My mental and physical health is not in a good place.  I'm wondering if I will be able to survive this, or if surviving will be even worth it, given what state I will be left in.  I will try to continue posting on here with updates if I am lucid enough.  Thank you for all of the work you guys do on this site, and best of luck with everything.

 

 

 

 

[Happy2Heal]

1 hour ago, Fosca said:

I'm wondering if I will be able to survive this, or if surviving will be even worth it, given what state I will be left in.  I will try to continue posting on here with updates if I am lucid enough.

hi and welcome @Fosca

sorry for what has brought you here, but please take heart, I know it feels bad now but it WILL get better! you will survive and you will come out the other side in better shape than you are now more than likely. This is what most often happens. 

It's a tough journey but many hundreds or thousands have travelled this same road and made it thru. I have made it to recovery and my life is wonderful now. and I was on so many psych meds for over 4 decades, so if this old lady can heal I imagine you will do just fine!!

 

recovery is the norm, not the exception. 

You will be ok, just take one day at a time, ok? or one minute at a time when things are at their roughest

 

watch for things that are improving, they will be happening in subtle ways so you need to look for them. The more you do this, the less distressing the process will be and the less added stress you will feel.

 

you are going to be ok. 

 

[getofflex]

7 hours ago, Fosca said:

I decided to quit the 0.5 mg reinstatement.  I know that is far from ideal, but I really don't know what to do given what a disaster this situation has been.  The 0.5 mg was definitely not helping -- I could literally feel it burning through my system when it reached peak plasma concentration 6-8 hours after taking it.

I can certainly understand why you quit the reinstatement, in this case.  

 

There is a good chance you kindled, from going on and off and back on the drug multiple times.  This tend to sensitize our nervous system.  This link explains more about kindling:

 

Kindling

 

Not to worry, many of us here have kindled, including myself, we are recovering.  I'm doing way better now, than I was in early recovery. 

 

7 hours ago, Fosca said:

I guess I now need to just pray that I can eventually heal and stabilize over time with the drug out of my system.

Like @Happy2Healsaid, chances are extremely high that you will heal!  The key is to avoid further mind altering chemicals and drugs, and take very good care of yourself and your nervous system.  Also, check out Baylissa's site. She has some very encouraging videos to listen to about withdrawal from psych meds.  

 

https://baylissa.com

[Fosca]

@Happy2Heal Thank you so much for the kind words -- they mean the world to me ♥️

[Fosca]

@getofflex

 

Yes, unfortunately I've massively kindled, and my nervous system is very sensitized.  I stopped taking it 4 days ago, so it's still in my system, but I'm assuming at this point it's too dangerous to touch the fluoxetine again, because I'd be at risk of kindling again.  Otherwise, I could theoretically try a smaller dose (like 0.1 mg? or even 0.01 mg if I could figure out the dilution).  I'm trying to figure out if there is anything I can do, other than self-care and managing symptoms.

 

I've never had a concussion before, but symptoms today feel like what I imagine a concussion would be like.  Head feels like it's full of cotton wool.  Very tired.  Slight, constant tinnitus.  Sensitivity to sensory input -- particularly sound.  Distance vision seems blurrier.  So far not noticing any dietary sensitivities, other than to caffeine, which I've cut out.  Admittedly I had a stressful day because I had to make a move, travel via plane, etc., which contributed to the sensory overload, but I am now in a better, safer environment for recovery.  The most difficult symptom, though, has been chronic, extreme insomnia.  It's like sleep deprivation torture.  I've been adding in a little melatonin, and it helps a bit.

[getofflex]

32 minutes ago, Fosca said:

I stopped taking it 4 days ago, so it's still in my system, but I'm assuming at this point it's too dangerous to touch the fluoxetine again, because I'd be at risk of kindling again.  Otherwise, I could theoretically try a smaller dose (like 0.1 mg? or even 0.01 mg if I could figure out the dilution).  I'm trying to figure out if there is anything I can do, other than self-care and managing symptoms.

You could possibly consider taking an extremely small dose, such as 0.1 mg.  Please read carefully the link I gave you on reinstatement above.  Realize that reinstatement probably won't take away all your symptoms, but it may help to reduce them.  Let us know what you decide.  

 

34 minutes ago, Fosca said:

The most difficult symptom, though, has been chronic, extreme insomnia.  It's like sleep deprivation torture.  I've been adding in a little melatonin, and it helps a bit.

Oh, my heart goes out to you.  Insomnia was my worst symptom, too.  Please be assured, this will improve and get better, but it takes time.  Yes, severe insomnia can feel torturous.  I'm glad the melatonin helps.  Also try the omega 3 and magnesium, as suggested in my first post.    Here are a list of non drug ways to help your sleep get back to normal.  These are things I've been doing for about 3 years, and I believe they have helped:  

 

My Insomnia Tips

 

Insomnia has been the worst part of WD for me.  Here is what I do to help.  

 

1) don't get overly anxious about it.  Realize that eventually, your sleep will improve.  Insomnia won't kill you, although it can make you pretty dang miserable.  Anxiety about sleep just makes the problem worse.  I know, easier said than done. I don't always do this, but I try.  Practice acceptance.

 

2)listen to very soft relaxing music at a very low volume.  

 

3)don't worry about what time it is.  Don't look at the clock.  

 

4) I try to stay active during the first half of the day.  I take a walk (mine is one hour) after breakfast every day.  Then, as the day goes on, gradually slow down.  Several hours before bed, I only do very relaxing things, like read, or just sit and relax.  This helps to set our circadian rhythm.  Try to get outside and get some light exposure during the day, too. 

 

5) Avoid toxic, negative people.  Avoid stress when possible, although I know a lot of stressors are unavoidable.   For me, this can really help me to relax better.  

 

6) I stay away from MSG and aspartame.  These are exitotoxins which overstimulate the nervous system.  They are in a lot of our modern processed foods.  I try to eat more whole and natural, and not as many processed foods.  Also avoid processed meats with sodium nitrate, etc , such as hotdogs, ham, bacon, and sausage.  These can keep you up at night too.

 

7) avoid eating large amounts of sugar and processed carbohydrates.  This causes your blood glucose to spike up, which causes your pancreas to create insulin to control your blood sugar, which then causes your blood sugar to drop too low, and then your to create adrenaline to try to regulate your blood sugar.  Adrenaline keeps you awake because it is an activating hormone.

 

Here is a link about insomnia and withdrawal: 

 

Withdrawal Insomnia

 

[Fosca]

22 hours ago, getofflex said:

You could possibly consider taking an extremely small dose, such as 0.1 mg.  Please read carefully the link I gave you on reinstatement above.  Realize that reinstatement probably won't take away all your symptoms, but it may help to reduce them.  Let us know what you decide.  

 

 

@getofflex I've really debated about this, but I think ultimately it's too much of a gamble.  Fluoxetine's long half-life makes reinstatement particularly tricky, because it ramps up in your system until reaching a steady state about a month in, from what I understand.  So you will probably feel worse for quite awhile before you figure out if the reinstatement actually helped.  Now that I've stopped, I can actually tell that reinstatement did help with some withdrawal symptoms, particularly headaches and nerve pain, but I feel progressively terrible every time I take a dose and it builds in my system.  I'm not sure I can do that for a month+ in the hopes that I can stabilize and have an ultimately milder set of side effects and symptoms on that dose, which I have doubts about.  Plus my body is so out of whack, that symptoms are constantly appearing and disappearing, things seem to be getting better, then they get worse, and at times it's difficult to figure out what the cause is -- is it a drug side effect? is it a withdrawal symptom? etc.  I think it's best to just stop and not risk doing more damage 😕

 

And thank you for the insomnia tips -- I will review everything thoroughly and try to implement them.

 

 

[Fosca]

Hello,

 

I was wondering if someone could help me figure out what the measurement is for each line on this syringe?  It's Brandzig 1 mL.

 

Also, if I wanted to dilute liquid fluoxetine for very small doses (0.1 mg and less), how would I go about doing that?

 

Thank you in advance.

[Fosca]

I'm feeling anxious and sad today.  It's been 7 days since I stopped the fluoxetine.  I was expecting the more severe withdrawal symptoms to have hit by now (neuropathic pain), but they haven't.  Based on my symptom pattern, my guess is that my body is registering the botched reinstatement, and true withdrawal hasn't kicked in yet because of the long half-life, so I'm in a "limbo" period.

 

I'm still mulling over in my mind whether I should attempt to stabilize on a very low dose -- 0.1 mg or less.  As I've said earlier, I can tell that reinstatement has helped, but unfortunately I messed it up and reinstated way too high.  I'm trying to figure out the logistics of how that would work, in case I want to try.  With regards to syringes -- I've attached a photo of the Brandzig 1 ml syringe I have.  Can anyone figure out what the measurement of each individual tick is?  Also, with regards to dilution -- I assume if there is 4 mg per 1 ml of liquid fluoxetine, adding in 1 ml of water to 1 ml of liquid fluoxetine would dilute it to 2 mg per 1 ml, adding in another 1 ml water would bring it down to 1 mg per 1 ml, etc.?  Or if you were to take 5 ml liquid fluoxetine with a 4:1 concentration, adding in 5 ml of water to that would bring the concentration down to 2:1, another 5 ml of water added would bring it down to 1:1, etc.?  Correct me if I'm wrong.  And based on what I've been reading on here about dilution, it seems said dilutions, if made, would need to be refrigerated and would only be shelf-stable for a few days.

 

 

[Fosca]

Sorry for the excessive posting, but adding what I think I've figured out.

 

With the above syringe, the first black line is effectively zero.  You can't really accurately get any liquid out of the syringe at the first line (or maybe the first few lines).  It seems below the 0.05 mL mark is not a very precise measurement on this 1 mL syringe.  Also, I believe each line represents approx. 0.0167 mL (kind of bizarre).

 

I also messed up my calculation of the dilution.  It would work as such.  With liquid fluoxetine, take 5 mL of fluoxetine with a concentration of 20 mg : 5 mL.  Add 5 mL water.  You then have a 10 mL solution with a concentration of 10 mg : 5 mL.  Add 10 mL water.  You then have a 20 mL solution with a concentration of 5 mg : 5 mL.  Add 20 mL water.  You then have a 40 mL solution with a concentration of 2.5 mg : 5 mL.  etc. as desired.  At the 2.5 mg : 5 mL concentration, you take 0.2 mL of solution with the syringe, which is 0.1 mg of fluoxetine.

 

Alternatively, you could do this with smaller amounts (and get a smaller amount of solution).  Take 1 mL of liquid fluoxetine with the standard 4 mg: 1 mL concentration.  Add 1 mL of water.  You now have a 2 mL solution with a concentration of 2 mg : 1 mL.  Add 2 mL water.  You now have a 4 mL solution with a concentration of 1 mg : 1 mL.  Add 4 mL water.  You now have a 8 mL solution with a concentration of 0.5 mg : 1 mL.  etc.  At 0.5 mg : 1 mL concentration, you take 0.2 mL of this solution, which is 0.1 mg of fluoxetine.

 

My bottle of liquid fluoxetine says that it should be stored at room temp.  I'm assuming that the diluted liquid fluoxetine shouldn't be stored in the fridge, though I'm seeing some posts on here saying dilutions (at least from capsules?) should be stored in the fridge.  I'm also seeing posts that say diluted solutions are only good for a week max.  If anyone has any more knowledge about dilutions, or can double-check the math / info I gave above, I would love to hear about it.  

[Fosca]

One more thing I just discovered -- I think liquid fluoxetine is only good for 1 month after opening?  I will try to double-check this later.

Anyway, I'm just trying to figure out the logistics of how a very low dose taper would work with a diluted solution of liquid fluoxetine.  (How do you store the liquid fluoxetine concentrate and for how long is it good for after opening?  How do you dilute the liquid fluoxetine for tapering a small dose?  How do you store the diluted solution and how long is it good for?)  I'm trying to figure out as much of this on my own with research on this site, but would love input or confirmation from anyone on here who has more experience.

[Happy2Heal]

I am not good at math or I would help you.

 

 

[getofflex]

I'm not following all of your mathematical calculations. What you would do is add 3 parts distilled water to one part liquid Prozac.  This would give you a solution where 1 ml of liquid would contain 1 mg of Prozac.  This would be the easiest way to go, and the least error prone.  For example, add 3 ml of distilled water to 1 ml of prozac, and gently stir to mix it evenly.  Or, add 0.3 ml of distilled water to 0.1 ml of Prozac, and you have enough for 4 days.  

 

That syringe you showed a picture of is an oddball.  You could use that for your first dose of 0.1 m.  But it has 0.1 ml divided up into 6.  Usually, they are divided into 5, or 10.  I suggest you get the syringes that are divided up into 10, so you can measure accurately up to 0.01 ml increments, for when you do your dose reductions.  They are easily obtained on amazon.  

 

14 hours ago, Fosca said:

One more thing I just discovered -- I think liquid fluoxetine is only good for 1 month after opening?

No, a commercial liquid Prozac should be good for much longer than that.  You can ask your pharmacist for the expiration date on it.  I've been using my bottle of liquid Lexapro since last September, and it doesn't expire until this September.  I've had no problems.  It's different if you dilute it. Once you dilute it, the preservatives in it will no longer work properly, and you should refrigerate it in a covered container.  We at SA believe it will be fine for about 4 days.  

 

Please let us know what you decide to do.  

[Fosca]

@Happy2Heal No problem!  I'm not the best, either, but I think I got the dilution math figured out correctly, as well as the markings on the syringe I have.

 

 I also found this by altostrata (not sure if I should "at" them since I don't want to bother them?) about a way to dilute so 1 mg: 1mL (just posting for my own reference) --"Increasing the dilution might make measuring easier. For example, you may wish to make it 1mg = 1mL. To do this, add 10mL (40mg) of the 20:5 solution to 30mL of water. Now you have 40mL of liquid containing 40mg Prozac, or 1mg in 1mL."

 

I also just contacted the manufacturer of the product I have -- "Oral Fluoxetine USP" made by PAI in the US.  They told me that the medication is good until the expiration date on the bottle, even after opening, and that you should store in a cool, dry place.  They are going to get back to me with any other information about creating a dilution.

 

I realize this is probably just rearranging deck chairs on the Titanic for me at this point, but maybe this info will help someone else in the future.

[Fosca]

14 minutes ago, getofflex said:

What you would do is add 3 parts distilled water to one part liquid Prozac.  This would give you a solution where 1 ml of liquid would contain 1 mg of Prozac.  This would be the easiest way to go, and the least error prone.  For example, add 3 ml of distilled water to 1 ml of prozac, and gently stir to mix it evenly.  Or, add 0.3 ml of distilled water to 0.1 ml of Prozac, and you have enough for 4 days.  

 

Ok, thank you for the info!  Yes, it is easier to think of it that way.  I think my second set of calculations was correct -- basically adding 15 mL water to 5 mL fluoxetine (3:1) gives you a 1:1 concentration.  I'm assuming the water has to be distilled?

 

20 minutes ago, getofflex said:

I suggest you get the syringes that are divided up into 10, so you can measure accurately up to 0.01 ml increments, for when you do your dose reductions.  They are easily obtained on amazon.

 

Yes, it took some looking, but I think I found one that will work on amazon.

 

21 minutes ago, getofflex said:

No, a commercial liquid Prozac should be good for much longer than that.  You can ask your pharmacist for the expiration date on it.  I've been using my bottle of liquid Lexapro since last September, and it doesn't expire until this September.  I've had no problems.  It's different if you dilute it. Once you dilute it, the preservatives in it will no longer work properly, and you should refrigerate it in a covered container.  We at SA believe it will be fine for about 4 days.

 

Ok, thanks so much for all the info.  I will let you know what I end up doing, but I'm just trying to be prepared.

 

 

[Fosca]

@getofflex Sorry for all of the bother, but one more question about the process for making the diluted solution.  I know there is a lot of emphasis put on SA for adding a bottle adapter and drawing the liquid medication correctly with an oral syringe.  I understand how to do that.  When you are taking the "three parts" distilled water, though, are you just sticking the oral syringe into an open container of distilled water?  Or do you transfer the distilled water into a medicine bottle with adapter, and draw it that way?  And when you mix the medication with the distilled water and store it, is that being placed in another medicine bottle with adapter?  I hope these questions make sense.  I guess I need just really detailed step-by-step instructions to understand. 😔  Thanks for your patience.

[getofflex]

I haven't had to dilute my liquid Lexapro.  In my opinion, I think you could just put the oral syringe in the bottle of water.  That is how I dose my liquid Lex, and it's not been a problem for me.  

1 hour ago, Fosca said:

And when you mix the medication with the distilled water and store it, is that being placed in another medicine bottle with adapter?

That would be fine.  I would use an amber medicine bottle.  

[Fosca]

Not sure if I'm allowed to use this intro thread as a sort of diary, but just wanted to share that one thing I'm struggling with is how to forgive myself.  I can see so many missteps, some my fault, some not, over the course of my life that have led up to this situation.  Looking at my own drug signature embarrasses me.  There is of course a detailed explanation of what was going on in my life and why I made the choices I did, but laid out in black-and-white it looks like the actions of a madwoman.  I'm not expecting anyone on here to be my therapist, but just want to document what I'm feeling.

 

I'm staying the course so far with no reinstatement.  I just don't think my body can handle it after multiple kindlings.

 

Had some heart symptoms last night -- tachycardia maybe? definitely some chest / heart pain which is concerning.  Not experiencing it right now.  I can feel some withdrawal symptoms seem to be slowly ramping up, unsurprisingly.  Some more head pain, even more difficulty sleeping.  I will do some more research on ways to manage symptoms, and will try to update on how things progress.

[Fosca]

Just some more information for anyone who is curious -- heard back from the liquid fluoxetine manufacturer.  They said that it's fine to dilute with water, but they recommend taking the diluted the solution immediately.  They can't guarantee the stability of the product if it's been diluted or placed in another container.  Not too surprising a response, but perhaps good to know.

[Happy2Heal]

8 hours ago, Fosca said:

but just wanted to share that one thing I'm struggling with is how to forgive myself.  I can see so many missteps, some my fault, some not, over the course of my life that have led up to this situation.  Looking at my own drug signature embarrasses me.  There is of course a detailed explanation of what was going on in my life and why I made the choices I did, but laid out in black-and-white it looks like the actions of a madwoman.  I'm not expecting anyone on here to be my therapist, but just want to document what I'm feeling.

aww please try hard not to beat yourself up about what seems like past mistakes etc. 
This regret actually seems to be  a huge part of withdrawal and may even be a recognized symptom- I have seen it over and over again. Many of us have suffered the pain of feeling regret for all kinds of things in the past while going thru WD. 
I think it's part of the remodeling that our brains to in order to heal.

The drugs changed our brains due to the drugs and now that we have removed the drug, our brains want to change back to the way they were before.

 

You were just a teenager when you started the meds. People older and supposedly wiser were not aware of the consequences (or chose not to divulge them) The dr who prescribed the meds may have been misled by the drug companies and truly believed they were doing the right thing to help you. 

 

Be gentle with yourself. Withdrawal is no picnic, you don't need any extra burdens, ok?   ❤️

 

 

 

My life story looks absurd in retrospect, but that's because I literally did NOT know THEN what I do know NOW.

It's hard to remember that. 

We all made the best decisions we could with the info we had at the time, and under the circumstances that we were living thru as well. We change, we grow, we learn, as time goes on.

Or as my Dad used to say, we grow old too soon and smart too late!

 

You are being very conscientious about what you do now regarding your WD and recovery and that's something to be quite proud of. Against all the propaganda of the drug companies, against all the denials and failings of the medical system, and against all the popular opinions about easy drug cures for every malady under the sun that is prevalent in society,

YOU were able to figure out that the drug was the problem and take steps to fix things.

 

You also were not given the information that could have made this easier. YOU did NOTHING wrong.

 

BUT you are going to be ok!!

you're doing great so far!

 

are you seeing any small improvements or are things just too up and down to tell?

 

[getofflex]

23 hours ago, Fosca said:

Not sure if I'm allowed to use this intro thread as a sort of diary, but just wanted to share that one thing I'm struggling with is how to forgive myself.

Many, many of us have been in the very same situation.  Most of us (I know I have ) have been trained to trust in doctors and the medical profession.  So when they prescribe these drugs, we assume that this is a valid, good treatment.  These drugs can cause suffering, and getting off of them can cause major suffering too. What is very unfortunate, is when many people try to get off the drugs because they cause suffering, but then there is worse suffering when going off the drugs.  Very few people know how to do a proper gradual taper.  That is why this site exists.  These drugs are a real trap.  The secret key to getting free from this trap is extreme patience, fortitude, perseverance, and the willingness to endure some discomfort.  Take a look at happy2heals drug sig in the prior post.  S/he is not off drugs, and loving life, and peaceful and content.  Getting out of this trap can be done!  Please don't blame yourself - there are many factors at play to cause these scenarios - the health care industry, and in my opinion, this idea in our society that we need a pill to deal with anxiety and depression, which can be dealt with in non drug ways.  

[Fosca]

15 hours ago, Happy2Heal said:

Be gentle with yourself. Withdrawal is no picnic, you don't need any extra burdens, ok?

 

Thank you, @Happy2Heal, I will try 💞

 

15 hours ago, Happy2Heal said:

YOU were able to figure out that the drug was the problem and take steps to fix things.

 

I've consulted with many doctors (including a few psychiatrists) during this ordeal, and it amazes me how they know nothing about this or are in complete denial.  Even the psychiatrists know nothing about withdrawal, kindling, or hypersensitivity.  I've been given a bunch of "diagnoses" (anxiety, fibromyalgia, etc.) that make no sense and ignore the obvious -- that all of these physical symptoms started when I tried to reinstate the 10 mg.  Plus the symptoms wax and wane as the amount of the drug in my body changes.  Before that, I had never experienced anything like this in my life.  I know from reading this forum that, sadly, I'm not alone in this experience with doctors.

 

15 hours ago, Happy2Heal said:

are you seeing any small improvements or are things just too up and down to tell?

 

It's still a big mess.  Right now, I'm 10/11 days into what is my second withdrawal, after stopping the reinstatement.  I'm actually feeling quite a bit better than I was a few weeks ago.  However, my theory for this is that I'm feeling better because the reinstatement did alleviate some symptoms.  Unfortunately, I reinstated way too high, and that dosage was not sustainable -- it was causing me a ton of nerve pain as it ramped up in my symptom with fluoxetine's long half-life.  I could try to stabilize on an even lower dose (0.1 mg or less), but I'm extremely kindled / sensitive to the drug at this point, and I'm almost positive doing so would confuse my body more and lead to even more kindling.  So all of this is to say -- that I am actually feeling better compared to a few weeks ago, but I'm anticipating a massive crash will come in the imminent future as my body registers the withdrawal.  We shall see. 

[Fosca]

Well said, @getofflex ♥️  Thank you for your response.

 

52 minutes ago, getofflex said:

The secret key to getting free from this trap is extreme patience, fortitude, perseverance, and the willingness to endure some discomfort.

 

Will keep this in mind.

[getofflex]

On 3/17/2022 at 11:01 AM, Fosca said:

that I am actually feeling better compared to a few weeks ago, but I'm anticipating a massive crash will come in the imminent future as my body registers the withdrawal.  We shall see. 

I'm glad to hear that you are feeling better.  Please try not to catastrophize about the future - this may not happen.  Hang in there!  This will eventually resolve. 

[Fosca]

Hi again, @getofflex, -- you are right, I need to work on not catastrophizing, but it's hard.  I'll probably try to find a therapist soon in my new location, and will try implementing some coping techniques on my own.

 

Unfortunately, I can tell that my withdrawal symptoms are worsening.  The quality / intensity / frequency of my head pain seems to be a good indicator, I've found.  I think I was in a little window after stopping the reinstatement where I was no longer getting the awful side effects of the drug, but the withdrawal symptoms hadn't kicked in.  The same thing happened when I stopped taking the 10 mg I had kindled on -- I had a few day grace period where I felt decent before the withdrawal hit.  At this point I guess all I can do is ride it out, and hope that it will slowly get better in the long run.

[getofflex]

Hang in there, this too shall pass.  Have you checked out the link in my first post to you about non drug coping techniques for WD symptoms?  There are many good techniques in there to help.  Yes, it will eventually get better, very gradually in windows and waves.  

[Happy2Heal]

20 hours ago, Fosca said:

Unfortunately, I can tell that my withdrawal symptoms are worsening.  The quality / intensity / frequency of my head pain seems to be a good indicator, I've found.  I think I was in a little window after stopping the reinstatement where I was no longer getting the awful side effects of the drug, but the withdrawal symptoms hadn't kicked in.  The same thing happened when I stopped taking the 10 mg I had kindled on -- I had a few day grace period where I felt decent before the withdrawal hit.  At this point I guess all I can do is ride it out, and hope that it will slowly get better in the long run.

sorry to hear that symptoms seem worse. I hope that they don't get too bad for you. While it's good to be prepared in case things worsen, predictions may not be too helpful. Things may not be as bad as you fear, and a lot of times being anxious about it tends to exacerbate any symptoms you might have, making you feel worse.

It is great that you have prepared yourself to ride it out. I pray that your waves are small and short lived and your windows are long and wide open!!!

 

You can be SURE of one thing though, it WILL get better. It may take some time, but it most definitely will get better. You will have good days, even great days, again. 

Our bodies are wonderful self healing organisms, always working towards health and wholeness.

 

You're going to be ok.

 

we're hear to help and support you along the way.

❤️

 

[Fosca]

5 hours ago, getofflex said:

Have you checked out the link in my first post to you about non drug coping techniques for WD symptoms?  There are many good techniques in there to help.  Yes, it will eventually get better, very gradually in windows and waves.

 

Yes, I remember seeing the link -- I will go back and look at those 👍🏻  My brain is not functioning well these days so I have VERY limited bandwidth, but I'm trying my best.

 

I do hope it will get better.  I know only time will tell.  To be honest, I have wondered if what is happening to me is not strictly withdrawal syndrome, but some sort of brain injury, given the issues started when I tried to restart and kindled (presumably) on the 10 mg.  I'm kicking myself for going back on the 10 mg in the first place, as well as not stopping sooner when it became clear I was reacting badly to it.  I suppose in either situation (withdrawal or some sort of brain injury?), there isn't really any treatment, though, so perhaps it doesn't matter.  The severity of the symptoms has me concerned.  I get not just headaches, or even peripheral neuropathy, but chronic head pain and burning sensations in my head and neck.  Even taking only 0.5 mg was causing burning nerve sensations.  Symptoms and intensity are changing on a day-to-day basis, but I have been meaning to document my symptoms in more depth at some point.

[getofflex]

It should get better if you take good care of yourself and avoid 

mind altering drugs and substances.  
 

https://www.survivingantidepressants.org/topic/1785-migraine-headache-neck-ache-pain-and-head-pressure/#comment-1736

 

[Happy2Heal]

1 hour ago, Fosca said:

To be honest, I have wondered if what is happening to me is not strictly withdrawal syndrome, but some sort of brain injury,

 

I think many many of us were wondering if we had a brain injury and/or many other potential illnesses or conditions because the symptoms of withdrawal can be so intense and so varied, you often wonder if you've got crazy, even.

I think there's a list somewhere on this site, I wish I could recall where it is, but what I mean to say is, that I used to read it when I was in acute withdrawal and it would calm me down about my symptoms being "normal" for withdrawal.

Of course these symptoms are incredibly abnormal feeling.  Very few people who have not experienced these symptoms for themselves, can understand what it is like. Many will not believe you. 

 

but, so far,  every  symptom you have mentioned is indeed, very very common. 

 

some of the most intense ones that you have early on do go away quite quickly. So I hope that brings you some comfort.

 

just be super kind to yourself and take good care of yourself, make your healing #1 and don't let anyone push you to do more than you can.

 

you will be ok. ❤️

 

[Fosca]

@getofflex @Happy2Heal Thank you for all the kindness, and listening / responding to my rambling 😅

[Fosca]

Thought I would give a quick update -- I'm pretty tired these days, so I'm not going to go into a ton of detail.  It's been about 3 weeks since I stopped reinstatement.  So far I haven't seen a huge change in my symptoms (either for better or worse).  I haven't had a huge crash yet, and I haven't had a return of nerve pain yet, which is good.  However, I am dealing more with overall fatigue, muscle weakness, and sensitivity.  Stimulation and activity, even just riding in a car or taking a brisk 30 minute walk, seems to stress and aggravate my body.  I'm also still dealing with head and neck pain (but less acute and intense), tinnitus, insomnia, and anorgasmia.  That's all that I can think of right now.

 

One thing that complicates my withdrawal, though, is that I'm almost certain that I've developed PCOS, which was previously undiagnosed.  In my mid-twenties I started taking 50 mg of spironolactone for moderate hormonal acne.  Hormonal acne can be a symptom of PCOS, but I had none of the other PCOS symptoms.  However, I found out earlier in fluoxetine withdrawal that I couldn't tolerate even a tiny dose of spiro, and had to stop taking it.  I'm now dealing not only with hormonal acne, but hair loss, hirsutism, and a shifting menstrual cycle.  I'm going to wait a couple of months and monitor my symptoms before going in to see doctors.  I'm also going to try and see what options are available to me to try and correct this hormonal imbalance -- diet changes, etc.  With my hypersensitivity, I don't know what treatments (supplements, etc.) I will be able to tolerate  I would just go back on the spiro if I could.

[getofflex]

Give it plenty of time and patience these things take a long time to recover from. It can take many months to years.  But take heart your system will recover given proper self care.  As far as your PCOS run the medication by us when you find out what the doctor gives you and we will see if it is anything that could affect your nervous system.