Fosca: fluoxetine hypersensitivity - please advise

[omnispan]

Hey Fosca, hang in there for me, I'm rooting for you

[Fosca]

@omnispan Thank you, my dear!  🙏🏻

[Fosca]

Feeling heartbroken today.  I tried drinking a cup of spearmint tea, a natural anti-androgen, to help treat my hormonal imbalance, and it seems to have triggered the same effect I remember when I was taking the spironolactone earlier in withdrawal -- lightheadedness, elevated heart rate, really odd sensation I can't quite describe -- like I'm amped up, or going out of my mind.  Luckily the effects are on the milder side and  have calmed a little, but I'm pretty sure it has worsened my withdrawal symptoms -- I'm typing this now with tinnitus and head pressure.  Overall it seems like my symptoms are getting slightly better, but my system is still hypersensitive to any stressor, change, or stimulus.  I feel like I could get through this withdrawal if I didn't have any underlying condition.  The PCOS I apparently had without even knowing it is such a stroke of bad luck, though.  The severity of my PCOS symptoms makes me really doubt my ability to treat it through diet alone.  I've lost so much hair.  And now I have facial hair starting to grow in.  Not being able to tolerate a cup of herbal tea does not bode well for other supplements, let alone medication.  I can't believe this is happening to me.  I'm devastated.  I cry everyday.  Don't know if it's even worth posting this, or posting anymore going forward.  It is just making me more upset.  Not sure that it is worth living in this state.  I dread the future.   

[Happy2Heal]

3 hours ago, Fosca said:

Feeling heartbroken today.  I tried drinking a cup of spearmint tea, a natural anti-androgen, to help treat my hormonal imbalance, and it seems to have triggered the same effect I remember when I was taking the spironolactone earlier in withdrawal -- lightheadedness, elevated heart rate, really odd sensation I can't quite describe -- like I'm amped up, or going out of my mind.  Luckily the effects are on the milder side and  have calmed a little, but I'm pretty sure it has worsened my withdrawal symptoms -- I'm typing this now with tinnitus and head pressure.  Overall it seems like my symptoms are getting slightly better, but my system is still hypersensitive to any stressor, change, or stimulus.  I feel like I could get through this withdrawal if I didn't have any underlying condition.  The PCOS I apparently had without even knowing it is such a stroke of bad luck, though.  The severity of my PCOS symptoms makes me really doubt my ability to treat it through diet alone.  I've lost so much hair.  And now I have facial hair starting to grow in.  Not being able to tolerate a cup of herbal tea does not bode well for other supplements, let alone medication.  I can't believe this is happening to me.  I'm devastated.  I cry everyday.  Don't know if it's even worth posting this, or posting anymore going forward.  It is just making me more upset.  Not sure that it is worth living in this state.  I dread the future.   

 

Hi hon

so sorry that you are having a rough day. It's very disappointing when you discover that something that you'd hoped would help you, has apparently made your WD symptoms a bit worse temporarily.

This may not always be the case. I know at least a half dozen of the folks on this forum who were eventually able to go back to drinking coffee once they were fully recovered, just as an example. During WD/recovery they were not able to tolerate caffeine at all.

so don't assume that just because it's a problem now, it always will be ok?   *gentle hug*

 

Try to remember that there's a bunch of coping skills ideas on this forum, so when one thing doesn't work out well, or stops working, there's almost always something else you can try, ok?

WD/recovery can be so damn frustrating!!

just when you think you've figured out what will help you the most, things change. And then you have to stop and kind of recalibrate.  Make some changes, try something new.

It can feel feel very bad when you've placed high hopes on a remedy and it doesn't work out the way you wanted.

But you can get past this.

You've gotten thru so much already, as hard as it is, you can make it thru another day.

Or if you feel really bad, just concentrate on getting thru the next hour.

 

what good thing has happened since you last posted? or even just one neutral, not disappointing thing?

 

you are going to get thru this.

it's ok to hate that it is hard and that it feels like it will never end but trust me, It DOES END and you get to resume you're "regularly scheduled life" again. It will be so so good when you get there, and you are well on your way.

❤️

 

[khoff4488]

On 3/11/2022 at 2:05 PM, Fosca said:

 

 Head feels like it's full of cotton wool.  Very tired.  Slight, constant tinnitus. 

 

This is how I feel every day. Sorry I was just reading your thread and this stuck out to me. Add on constant depersonalization and that's pretty much me. I'm at 1.8mg on a homemade dilution. Having a rough week.

[Fosca]

On 4/7/2022 at 8:37 PM, Happy2Heal said:

This may not always be the case. I know at least a half dozen of the folks on this forum who were eventually able to go back to drinking coffee once they were fully recovered, just as an example. During WD/recovery they were not able to tolerate caffeine at all.

 

Yes, I'm holding out hope that the hypersensitivity will fade, and until then I can find non-medication ways to control my PCOS symptoms.  Hypersensitivity wouldn't be so bad if I was otherwise in good health, but not being able to take any medications or supplements for health problems is very scary.  Honestly, I've read a lot of cases on this forum involving hypersensitivity that make me very scared, but I guess all I can do is try to have hope.  I really wish I had found out about this forum earlier -- I didn't even know hypersensitivity was a withdrawal symptom.  After tapering off the 20 mg of fluoxetine, I became unable to tolerate spironolactone about 2 months later, and I couldn't figure out why.  I had no other physical withdrawal symptoms at that time, only emotional.  I don't think I ever would have tried restarting at 10 mg if I knew the risk.  I actually thought that getting back on the prozac might allow me to tolerate spironolactone again, and that was a major reason why I tried to go back on it after ~4 months.  Now I'm in a much worse situation, with much more severe symptoms -- including even worse hypersensitivity.

 

On 4/7/2022 at 8:37 PM, Happy2Heal said:

what good thing has happened since you last posted? or even just one neutral, not disappointing thing?

 

I haven't had a return of any serious nerve pain in my head and neck.  The pain / pressure / aches in my head / neck / shoulders are not as bad as they used to be.  My sleep seems to be getting a bit better as well -- it's easier to fall asleep and I seem to stay asleep for a bit longer.  Haven't had as much muscle weakness as I did a few weeks ago.  I've been going extremely gentle on myself which definitely helps.  Unfortunately the hypersensitivity is a huge issue, though, so any stimulus will make my symptoms worse.  So in some ways it's a little hard to tell if I'm actually improving, or if I'm just feeling better because I'm doing less.  But if I avoid or significantly limit stimuli, my day-to-day symptoms are overall better than they were a few weeks ago.

 

And, as always, thank you for the positivity ♥️

 

 

 

[Fosca]

@khoff4488 No need to apologize.  Yeah, I'm also still struggling with tinnitus, head pain / pressure / ache / weird sensations, and fatigue everyday.  The fatigue seems to be trending towards the better, but today it is more prevalent -- I think because I'm still recovering a bit from drinking spearmint tea.  The "cotton wool" sensation / head pressure is the worst.  I have it almost constantly, but it ebbs and flows in intensity.  Same with the tinnitus, but that bothers me less.  I just feel permanently like my brain is trying to recover from a concussion, and any little stimulus, even herbal tea, is another knock to the head.

 

I'm sorry you are having a rough week -- I know it will get better!  I'm glad that you are in a position to be able to taper -- wish I was in that same boat.  Just go very, very slowly, and hold as long as you need.

[khoff4488]

@Fosca thank you for your kind words. I hope you're situation improves as well. 

 

I'm going slow as I can. But along the way I discovered that my depersonalization was being caused by my meds so I'm balancing my willingness to feel withdrawal symptoms with my need to get off of this stuff to regain my reality. It's tough. 

 

 

[Fosca]

11 hours ago, khoff4488 said:

But along the way I discovered that my depersonalization was being caused by my meds so I'm balancing my willingness to feel withdrawal symptoms with my need to get off of this stuff to regain my reality. It's tough. 

 

@khoff4488 Ah, I'm sorry about that.  It sucks to be caught between adverse drug effects and withdrawal symptoms.  I was experiencing some of that when I kindled on the 10 mg and then struggled with reinstatement.  Definitely defer to the expertise of the mods on how to best proceed.  I'm sure if you tread gently you will heal with time.

[normalhuman]

Hi Fosca, 

 

I just wanted to mention I’m not in the same exact position since I reinstated a low dose of Prozac this last time but even after reinstatement it took months for many of the worst symptoms to go away (and I think reinstatement probably made nerve/pain symptoms worse) but I also had hypersensitivity to meds/foods/supplements/tea etc from kindling with Prozac multiple times in the past. I had to stop other meds/ supplements/ vitamins. It did slowly get better and at around 9 mo or so I could tolerate many things just in smaller doses/amounts. For me Zyrtec also helped reactions but I’m not making any recommendations as some people can’t tolerate or have issues then getting off of that. And the more time goes by (15 mo) I can eat everything I want again (no zyrtec) and can tolerate most meds and supplements without brain fog/ reactions although I steer clear of many I used to use since I’m still healing. I trust it will continue to get better but I also went through a previous withdrawal that took 2 years to recover from Cymbalta with similar hypersensitivity to food/ meds etc so I know it gets better eventually. My
 

The crushing feeling that “it will be like this forever” can be very scary but you have to know it will improve.  Everyone’s timeline is different so only time will tell but you will make it through this!
 

 

[Fosca]

Hi @normalhuman, thanks for stopping by.  I'm glad you are doing better!  Interesting that Zyrtec helped your reactions.  I'm happy that the reinstatement has been working for you 👍🏻  I found on here another user who also said reinstatement helped his/her hypersensitivity.  For now I'm staying the course and seeing how things develop.  I'm avoiding all supplements and medications.  It's been 6 weeks since I stopped my botched reinstatement -- haven't had a big crash yet.  I am afraid though that my nerve pain might be slowly returning, and that delayed withdrawal symptoms are on the horizon, but only time will tell.  It is good to know that you've seen improvements with hypersensitivity -- both in your past and current withdrawal!  Thank you for the words of encouragement, and I wish you well in your continued recovery 🙏🏻

[Fosca]

Just wanted to share that a few days ago (about 6.5 weeks after stopping all fluoxetine) I noticed a definite shift in my physical symptoms.  The head pressure has noticeably decreased.  In general, the head and neck symptoms -- pain, pressure, ache, tension -- which have been pretty much constant up to this point, but with fluctuations in quality and intensity -- seem to be a little less intense, a little less frequent.  For these past few days I've even had several hours at a time that I would classify as windows, where I feel almost normal.  I'm still far from out of the woods -- last night and this morning have been a bit rougher -- but hopefully these are signs that I'm healing.    

[Fosca]

It's been 2 months since I took any fluoxetine.  Have some bad news.  A few days ago I noticed my symptoms starting to get worse.  I'm afraid that I'm going into a bad wave, or my symptom pattern is reverting back to what it was before my botched reinstatement.  I'm noticing a significant increase in nerve pain in my head and ears, and my sleep for the past two nights has been the worst it's been in at least 6 weeks.  I'm getting less than 5 hours, but I'm not sure the exact number.  I also get really hot and sweaty at certain points during the night -- I'm not sure if this is just withdrawal, or also a hormonal / blood sugar issue.  I feel really anxious and jittery as well, like my body is completely overwhelmed, and I'm having problems thinking straight.  Even as I type this I feel quite out of it, like I'm only partly aware of what is going on.  I also have this weird symptom that I haven't experienced in a long time -- when I'm standing, periodically it feels like the floor is vibrating underneath me.  Super odd.  I'm also going through a stressful time right now, unfortunately, because I have to fly back to my old apartment and clean it out.  It's a big push for me in my current state, but it has be done.  Hoping I can get through this trip and back to my family in one piece.  It's so scary not knowing how bad this is going to get, or how long it is going to last, or to what extent I will be able to recover.  My nervous system feels so damaged.

[Fosca]

Just wanted to add that I'm also experiencing some tingling in my feet periodically, which started a week or two ago.  I'm afraid that due to the (probable) PCOS I've developed pre-diabetes / diabetes.  My blood sugar was completely fine in December, but I had just stopped taking spironolactone at that point, which was probably controlling my insulin resistance (unbeknownst to me).  I'm finally seeing a primary care doctor next week, so hopefully that should get the ball rolling in terms of getting a diagnosis.  I will update this thread with my results.

[Fosca]

Hi folks.  This might be my last post.  Symptoms have further progressed since Monday, and I'm now 100% positive that I have diabetic neuropathy, in addition to PCOS.  I have pretty consistent tingling and numbness in my toes.  They are also a bit red in color.  The same thing is starting to happen in my fingers -- I'm getting some occasional tingling and numbness, and I can see the skin is starting to change.  All of my skin has dried out.  I have some aching as well in my hands and calves periodically.  At night, patches of my skin get hot and sweaty.  I'm noticing the very beginnings of vision changes.  I also suspect that some of my other symptoms are due to diabetic neuropathy rather than the antidepressant withdrawal, but those are harder to determine.  In December, before this whole debacle started, I had completely normal blood glucose levels in my bloodwork.  I noticed in bloodwork I had done in March that my blood glucose had risen significantly, to just below the "pre-diabetic" range.  I can only imagine where it is now -- I will know for sure on Tuesday when I go to my new doctor.  So I've gone from being completely healthy to having diabetic neuropathy in the span of 5 months...  I suspect that long-term fluoxetine use altered my glucose metabolism, and spironolactone was improving my insulin resistance as well.  Coming off both of them has caused all hell to break loose.  I'm struggling to come to terms with this, and I have no idea how I'm going to tell my family.  I have no idea how I'm going to control the diabetes, either.  I guess I have to do my best with diet and exercise, and pray that I am somehow able to tolerate metformin (which I have serious doubts about) and/or insulin.  I know this is an antidepressant withdrawal forum, not a diabetes one.  I'm not sure it makes sense, or is good for my well-being, to keep posting here.  I'm trying not to post anything negative, because I know this is also not the place for negativity.  But you can imagine where my thoughts are now.  If you happen upon this, please count your blessings for all you have, and please say a prayer for me.  If by some miracle I make it through this, I will come back and post.  I wish everyone the best, and thank you for reading.

[normalhuman]

Hi Fosca, I'm not a mod just someone who also deals with Prozac withdrawal (2nd time now) but wanted to note a couple things since I also have borderline glucose since tapering the first time a few years ago. I had lower/normal values and good physical health while on Prozac and after withdrawal had borderline high blood sugar as well as borderline high cholesterol out of nowhere as I get tested every year and suddenly seemed like I aged 10 years.

 

Anyhow, I would encourage you not to jump to conclusions on the diabetes & diabetic neuropathy though until you get your hbA1c blood test back if you can. I know it's scary but its possible those are also withdrawal symptoms. Diabetic neuropathy usually takes time to develop and I'm not saying you don't have an issue, it's great you are checking, just that pins and needles and neuropathic-type pain can be very common to antidepressant withdrawal too. For example, I woke up with numb hands and feet and dealt with pins and needles as well throughout the day. But my blood sugar wasn't high enough to cause it and after getting worse before it got better, it slowly improved after around 8 months out.  

 

Also, things will settle down eventually and you'll likely be able to tolerate the Spiro again.  And if not Metformin is often prescribed to help lower glucose levels with Prediabetes (which is what I'm on & I'm now in normal ranges again) so you have other options to try, or at least try when things calm down. Keep in mind even starting Metformin without WD symptoms can cause GI issues so if you do decide to try it start very low and slow.  Prozac withdrawal hits late so that's why it can be very confusing and I do think all the cortisol and stress from withdrawal set back my health some for me personally but it also made me become a lot more healthy in terms of diet and managing my health.  I ended up getting a Contour 1 glucose testing kit to occasionally monitor my own levels to make sure I'm still within good ranges at home and it's very easy to learn.

 

Hoping your appointment goes well. Remember there are tools to manage pre-diabetes & it doesn't mean insulin yet so just take things one day at a time.  

 

[Fosca]

Hi @normalhuman, thanks for the response.  I'm kind of embarrassed about my last post.  I was in a stressful situation and freaking out because my symptoms suddenly got way, way worse.  My anxiety in general has gone through the roof with this withdrawal and I often struggle to think straight.  I hadn't had any peripheral neuropathy type symptoms up to that point.  I'm still having them, but it's not as bad as it was when I posted.  I think it's probably just a new phase of withdrawal, but I have read that sometimes a drastic change in hbA1c can set off an inflammatory response and trigger diabetic neuropathy, which is what I was thinking at the time, given what seems like a huge jump over just a few months in my average blood glucose.  That said, I'm still almost positive that I have PCOS, which complicates everything.  But I will wait to get a formal diagnosis and report back the findings here.  

[Fosca]

Have been in less pain over the past few days, but I'm exhausted, and it feels like I'm caught in a twilight state between waking and sleeping.  I've mentioned before that it feels like my brain is not working, or that I'm only semi-aware of what is going on -- but I'm feeling that more intensely now.  I'm not sure if it's dp/dr... but it feels like my brain is on "idle" or "stand-by" mode, or part of it has shut down.  I don't feel like myself.  I can remember my old self, my old life, but it's somehow just out of reach.   I don't feel capable of much active thought or agency, even compared to last week.   It's disconcerting.  I'm hoping this will get better.  I find myself worrying about my prospects for recovery, given how long I was on the drug.  I'm afraid it's permanently altered my brain architecture.  I wish I had never started it in the first place.  But I also wish, given my current circumstances, that I could go back on it, and that if I did try to get off of it, to do it very slowly and carefully.  But now, with how kindled I am, I'm just stuck.

[Fosca]

I also just want to say that, for people who are still following this thread, thank you for sticking around.  I'm sorry my posting has been negative and erratic -- my brain is just not functioning properly.  I can look back through this thread and clearly see that.  It's scary, being able to recognize that there is something "off" with your emotions and thought patterns, but being unable to do anything about it.  I'm trying my best.  I will try to be more careful about updating.

[Fosca]

Belated health update:

 

I don't have prediabetes or diabetes yet, thankfully.  However, my blood sugar has gotten worse as well as my cholesterol, which is borderline high.  I'm not sure if this is due directly to stopping fluoxetine or spironolactone.  It could just be a secondary effect due to my impaired sleep, impaired ability to exercise, and worsened diet.  I need to try harder to get more exercise in and improve my diet, but both the mental and physical effort is hard for me in my current state.  Other than that, my Vitamin D is on the lower side, but not enough to be deficient.

 

I also haven't been able to get a diagnosis of PCOS.  My periods have become less regular; I'm continuing to lose hair; I have hormonal acne and mild hirsutism.  The OB/GYN dismissed me outright because I'm not a "typical" PCOS patient.  I had total testosterone tested, but it was within normal range.  No one can give me a viable answer as to what is causing these symptoms, though they all point to a hormonal imbalance or hormonal sensitivity of some kind -- like androgen sensitivity.  I think stopping spironolactone has to be the key factor -- either I'm having spiro "withdrawal", an "androgen rebound", or my androgen sensitivity has somehow increased.  I initially started spiro just for hormonal acne.  I didn't have any of these other distressing symptoms until stopping spiro.  I'm sure antidepressant withdrawal is not helping matters, but my gut is telling me this is all related to stopping spironolactone, which is a bummer.  I will be seeing an endocrinologist who will hopefully be able to do a full hormone panel to get a fuller picture of what might be happening, and rule out other conditions.  Unfortunately the appointment is not for another 3 months.

 

Overall I am disappointed by the quality of care I'm receiving here in my new location.  I feel like the doctors are completely dismissive and have written everything off as "anxiety" and "stress."  They aren't willing to investigate any further.  I feel gaslit, too, about some of my symptoms.  I've had a definite increase in body and facial hair compared to my baseline level of "hairiness," but they refuse to believe me because it's not obvious, heavy hirsutism.  Similarly, they don't see anything unusual about the fact that I've always had an extremely regular menstrual cycle, and now my cycle length is all over the place.

 

With regards to my antidepressant withdrawal / kindling -- no one believes me.  It's incredibly frustrating and isolating.  My family, who doesn't know anything about antidepressants, thinks all of my symptoms are anxiety and that it's impossible that the medication could do this to me, because "our bodies are more resilient than that."  The doctors are badgering me to go find a psychiatrist -- get re-diagnosed, try a new antidepressant or different psychiatric medication because fluoxetine "didn't work".  I'm positive if I tried a different med it would absolutely fry my brain.  Only 0.5 mg of fluoxetine caused me burning ear pain -- I'm that badly kindled.

 

I have 24/7 tinnitus, and I'm also concerned that there could be something going on with my inner ear / vestibular system, so I will be seeing an ENT to see if they can at least assess for hearing loss or anything else going on.  I obviously don't want anything to be "wrong" with me, but it'd be nice if something could definitively show up on a test, just to have some proof that I'm not insane.  

[RandyJames]

On 4/9/2022 at 12:29 PM, Fosca said:

The "cotton wool" sensation / head pressure is the worst.  I have it almost constantly, but it ebbs and flows in intensity.

I just wanted to say that I have the same cotton feeling in my head also.  I just searched this site for cotton/head because of it.  It's a really weird uncomfortable feeling.  I've had it randomly throughout ad withdrawals and extra bad brain fog always accompanies it.  Very dizzy too.  I hope you feel better.  

[Fosca]

Hi @RandyJames, I'm sorry you've been having the "cotton wool" sensation as well.  Mine seems to have subsided, but been replaced by aching.  I have a bunch of terrible head and neck sensations -- aching, throbbing, vibrating/buzzing, tightness, lightheadedness.  Thank you for the well wishes, and I hope you feel better, too.

[Fosca]

It's been a little over 3 months since I stopped fluoxetine, after kindling caused only 0.5 mg of the drug to give me burning nerve pain in my ears.  I've been trying to create a detailed drug history and list of my current symptoms, but I'm finding it too overwhelming.  I have so many debilitating symptoms.  I feel like I am losing my mind.  I am mostly housebound and cannot work.  Even going for walks is uncomfortable and difficult.  I honestly think this isn't even withdrawal, but brain damage from kindling / adverse reaction.  Every hour of every day is a struggle, and I never feel "normal" or symptom-free.  Some of my symptoms come in a window and wave pattern, but many others, while they may fluctuate in quality and intensity, are more constant.  These include:

 

-Head — tightness, aching, pressure, lightheadedness, buzzing/vibrating, throbbing.  My head never feels "normal" and this is super debilitating.  Worsens with activity.

-Neck tightness. Worsens with activity.

-Ear pain, pressure, fullness

-24/7 constant tinnitus

-Tightness in limbs and body

-Muscle weakness after mild physical activity

-Vestibular dysfunction? / sensory hypersensitivity? / exercise intolerance? that makes it difficult to do anything even remotely stimulating or active, from going on a walk in nature to riding in a car to eating in a restaurant

-Neuropathic pain, tingling, and numbness throughout different parts of my body -- currently a milder symptom, comes and goes

-Increased sensitivity to physical pain

-Fatigue

-Sexual dysfunction

-Insomnia - difficulty falling asleep, staying asleep, fragmented sleep.  On an average night I seem to manage 5 hours of sleep, but I never feel rested.  It’s not uncommon for me to have head and neck tightness / aching / squeezing / buzzing, loud tinnitus, and twinges of nerve pain throughout my body during the night — either while trying to fall asleep or if I wake back up.  Sometimes after hours of these symptoms I will seemingly blackout.  I wake up with tinnitus and aching in my head, making it difficult to get out of bed in the morning.

-Hypersensitivity to drugs, supplements and herbs -- the reason I had to quit spironolactone

-Cognitive issues / brain fog — difficulty concentrating, increased effort to complete cognitive tasks, difficulty remaining fully present and aware of my surroundings.

-Sensitivity to emotional content — sad, moving, distressing, or scary content on tv and in films has an extreme effect on me.

-Irritability, depression, hopelessness.

 

My other symptoms that I think are due to spironolactone "withdrawal" / androgen hypersensitivity / hormonal imbalance are: hair loss, moderate hormonal acne, hirsutism, less regular menstrual cycles, more painful periods.

 

Is there anything I can do?  I assume I can't go back on fluoxetine because I kindled on only 0.5 mg, right?  My body seems to have completely rejected the drug.  I assume trying any other antidepressant would be a huge risk given how destabilized my system is.  I guess it's probably too early to risk trying something like lamotrigine?

 

My quality of life is very poor.  I am effectively disabled.  I want to believe that somehow I can heal from this.  I think I've kindled so badly and my symptoms are so severe that it is going to take years and years to heal, if I do.  Part of me thinks I am unfortunately one of those cases that will not heal.  I have to stop my brain from thinking too much about my past, about my future.  About the fact that this was all completely preventable, if I had known how dangerous it is to start and stop antidepressants.  It is too upsetting.   If I don't see improvement, I'm not sure how long I can keep living like this.

 

[Fosca]

Timeline

After 6 week taper off of 20 mg fluoxetine:

0 MG for approx. 4 months -- hypersensitivity to substances 2 months in.  Had to quit spironolactone.  Irritability, crying spells, mood swings, depression, low energy. Sexual dysfunction from fluoxetine improves.

10 MG for 12 days -- dizziness, off-balance, lightheadedness, feel slightly sick.  Sexual dysfunction returns.

0 MG for 3 weeks -- Physical symptoms resolve.  But then have emotional breakdown with urges to self harm

10 MG for 3.5 weeks -- burning headache on top of skull and off balance, difficulty walking when I first started.  Then headache at back of head and neck ache.  Dizziness, off-balance, sick, lightheaded feeling.  Jittery like I'd had too much caffeine.  Elevated mood.  Dazed feeling.  Some sweating.  Some insomnia.  Thought I was going to stabilize, but then developed bladder pain at night (neurogenic bladder?) and told to quit medication.

0 MG for 25 days -- nightmares, vivid dreams, sweating, insomnia, difficulty walking, headaches, burning nerve pain in head and neck, uncontrollable shivering, nausea, tinnitus (more intermittent) etc.  Sexual dysfunction improves.  Went to ER multiple times.

2.5 MG 1 day, 1.25 mg 1 day -- jittery feeling and increase in pain

0 MG 4 days -- my headache / nerve pain cleared up to the best it had been.  I reasoned that the medication was helping my symptoms, but that I reinstated at too high a dose.

0.5 MG for 3 days -- burning nerve pain centered on my ears.

0 MG for 3+ months (present day) -- current symptoms (listed in my last post).  Tinnitus worsens and becomes constant.  Sexual dysfunction worsens.

 

[Fosca]

I asked this earlier -- but can anyone tell me what exactly has happened here? See my timeline and symptoms in previous two posts for context.  I'm experiencing withdrawal?  Or is it kindling / adverse reaction?  Or both?  And is there anything I can do?  I'm assuming I'm too badly kindled to try reinstating fluoxetine again?  And trying another antidepressant would also be dangerous?  My only other option would be to try lamotrigine/Lamictal at a low dose?  Other than just continuing to do nothing and hoping things improve and I don't have permanent brain damage.

[Fosca]

I am so stupid... I can't believe I destroyed my life like this.  I don't want to die, but I don't see any future for me that's worth living...

[Fosca]

Dear all, I'm not sure what the point of posting is, but I took the time to write this, so...

 

I've given it some thought, and I believe the bulk of my problem is not from withdrawal, but severe kindling and adverse reaction.  Restarting the 10 mg fluoxetine was my fatal error.  I was getting bad adverse effects (burning headache, unsteadiness, etc.) from it within a few days of taking it, and I should have stopped immediately.  Instead I kept taking it for 20+ days.  Despite all of this, I think there was a chance that, after stopping, I could have made a near full recovery over months and years.  The decision to try reinstatement -- 2.5 mg, 1.25 mg, stopping for four days, and then 0.5 mg for three days -- was the final nail in the coffin.  Since I was suffering more from kindling / adverse reaction rather than true withdrawal, I should have never touched the drug again.

 

I know that adverse reactions can cause permanent damage.  I fully believe that the users on this site who had an immediate adr within a few days and stopped the medication will recover with time.  I also believe that users who severely kindled and within a few days dropped their dosage back down or stopped can also recover.  After staying on a severely kindled dose for 20+ days, and then trying to reinstate again, I don't have much hope for recovery.  I believe this kindling / adverse reaction has made extremely long lasting if not permanent changes to my nervous system.  This does not feel like "windows and waves" protracted withdrawal.  This feels like a long lasting if not permanent change to my brain.  I know from my research that, at the very least, my tinnitus is most likely permanent.

 

I'm going to try to limit my time more on this site going forward.  Let's see if I can hold myself to that.  I will post if I am looking for advice on a supplement / treatment / medication, if there is a major development or discovery regarding my health, or if I have a dramatic symptom change.  Otherwise, I intend to post an update at my 1 year mark (March 7 2023).

[Docc]

Hey Fosca,

 

I’m rooting for you. Time WILL heal you. I hope that you will see some improvements however small they are soon.

[Fosca]

Thank you, @Docc.  I'm wishing you healing as well.  I'm definitely past some of the "acute" symptoms I had at the beginning -- like sweating and shivering.  I don't think those will come back.  I started to see improvements after stopping my failed reinstatement, but it seems like things have started to worsen again.  I've been increasingly crushed over the past few days with worsening fatigue and headaches during the day.  It feels like my brain is being squeezed.  I feel so weak and tired, like I want to pass out, but can't.  Will just have to soldier on for now and keep surviving.

[Docc]

Yeah I can relate to the squeezing part but I got that from my burnout. Well, I call it head pressure. Its a terrible feeling. Magnesium glycenate helps me a bit with that.

 

How is your sleep? If I really don’t do anything like lay on bed all day and not even read a book or look at my phone my symptoms get slightly better the next day. But that’s a hard life.

[Fosca]

@Docc Good to know re: magnesium.  I haven't tried any yet, but probably will in the near future.  I've tried melatonin -- which does help me sleep, but only if used very sparingly -- it loses it's effect if I take it regularly.  I've also tried some fish oil, but it's unclear to me if it helps, hurts, or has no effect.

 

Sleep is not good, but not as bad as it was in the "acute" phase (first month).  Improvements in sleep seem to have plateaued.  I'd say on an average night I get 5 hours.  Sometimes I can sleep all the way through, sometimes it's fragmented.  5 hours seems to be my "default" sleep setting, the way 7-9 hours used to be when I was healthy, and my body just refuses to sleep more than that.  I wake up not feeling rested and am often tired throughout the day.

[Docc]

Ah sorry to hear about the sleep.
 

same here. On good days I do 5 6 hours max. While the healthy me would do 9 hours easily lol still it beats no sleep every day. I just did a 50% drop and haven’t slept in 48 hours or so 😔

 

i wish I could just sleep all this off. Wake me up when I’m doing better

 

fyi: I dose magnesium glyc 4 times a day. Seems to keep my head from burning down.

[Fosca]

21 minutes ago, Docc said:

i wish I could just sleep all this off. Wake me up when I’m doing better

 

Yes, I know the feeling exactly.  I hope your sleep improves soon.

[normalhuman]

On 6/21/2022 at 2:46 PM, Fosca said:

 

I know that adverse reactions can cause permanent damage.  I fully believe that the users on this site who had an immediate adr within a few days and stopped the medication will recover with time.  I also believe that users who severely kindled and within a few days dropped their dosage back down or stopped can also recover.  After staying on a severely kindled dose for 20+ days, and then trying to reinstate again, I don't have much hope for recovery.  I believe this kindling / adverse reaction has made extremely long lasting if not permanent changes to my nervous system.  This does not feel like "windows and waves" protracted withdrawal.  This feels like a long lasting if not permanent change to my brain.  I know from my research that, at the very least, my tinnitus is most likely permanent.

Hey Fosca, I just wanted to add that I really do think you will improve over time and honestly 3 months or so after going on and off again and after 12 years of use isn't that much time for healing, and not to belittle that time of suffering but it's not nearly long enough to judge whether anything is permanent (even in PSSD circles a 2 year mark is considered early to judge permanency for some lingering issues for example, and many report healing continuing after that). That is a good thing even though it may seem like this journey already has lasted forever you have hope on your side statistically and many also recover in less time.  Some symptoms tend to go away, others feel like they take forever to dissipate or improve. The fact that for most this is such an incredibly bizarre and awful/unexpected/painful experience, without the support or understanding of many conventional Dr's, potentially mystifying family/friends, and with very little set timeline it's no wonder it can feel terrifying and unpredictable, like you may never heal. I know it's hard but the fact that some of your symptoms have gotten better is a good sign- it's just that many of them may morph and some take much longer or pop up when you thought you've already had everything. Personally I believe withdrawal itself is extremely stressful on the body especially if you have CNS symptoms and higher cortisol that can cause downstream health issues for some as well but many still improve after time after everything calms down a while and the body catches up on repairing. For example my blood sugar and even cholesterol were suddenly bad even though I was eating better than I had in years.  But it's slowly improved again after a year and a half.

 

Also just be aware that the rebound depression/anxiety/intrusive thoughts/feelings in withdrawal and post-acute withdrawal can cause a lot of distorted thinking even about your own recovery but you should try to push yourself to not buy into that distorted feeling of doom and despair because you will get better - just probably not as fast as you want. It also doesn't mean you can't feel sad or angry about the situation but don't dwell or ruminate there too long.  In my opinion if you accept that idea (you will get better but have to live with uncertainty of how and when and in what ways) it can take a little stress off- you can relax a little and just have to mostly wait it out, learn non-med coping techniques for living, and take care of yourself and be gentle. Day to day try small steps to be a little less miserable- do what you can for where you're at now, not where you wanted to be. There's a saying "if you are going through hell, keep going." sometimes that helps think about - you've made it through every worst day you've already had and are still here, you can get through this.  Maybe try writing a sticky note and keep it somewhere prominent that says "I am healing" or some other phrase you can go back to and look at for when you lose perspective; even if you can't believe it all the time trust that some part of you is. I'm just pointing that out to hopefully maybe offer some outside perspective that you don't need to believe the doom you might feel or be convinced of at times - you might feel it but if you start to observe it mindfully some part of you can realize it's not accurate and to go about whatever other business you might want to be doing or even a distraction at times.  You may be accustomed to trusting your mind and instincts but in withdrawal most people struggle with losing perspective when weeks and weeks of suffering go by, which is understandable, but it can cause even more suffering that adds to the pain you're already having to go through.  That's one other helpful concept- pain vs suffering, which has Buddhist roots... you will experience and go through pain but suffering can be all the rumination fears and focus you add on top of the pain of withdrawal itself.  Try to minimize suffering. Eventually you'll have better hours and days. Your brain and body are slowly adjusting to a balance without fluoxetine.  On top of the withdrawal if you do have some underlying anxiety and depression it helps to take this time to learn as much as you can about coping skills like relaxation techniques and meditation, getting therapy to address trauma, or whatever modality you want to use to manage symptoms without medications. Don't give up and keep going, keep healing and learning.

[Fosca]

@normalhuman Thank you for taking the time to write your post.  It's very thoughtful and helpful.  I will try to go back and use it as a reference and work on those skills.

This experience has been so hard.  I know I need to try to distract myself, at the very least to just get through this for now and stay alive.  My goal is to make it to my 1 year mark.  But even distracting is hard because of how limiting and inescapable my symptoms are.  I'm not quite bedridden, but almost.  There is very little I can do, but I guess I need to just try to push myself to do something so I can keep moving forward. 

 

I have done research on my symptoms (on this forum and others), which was probably a mistake, because that's how I discovered that basically no one recovers from 24/7 tinnitus that goes on for months.  This symptom has become my most bothersome, because there is no escaping it, and the thought of having it for the rest of my life is hard.  Mine has actually gotten worse, which is also not a good sign.  I would describe mine as moderate and somewhat unstable -- I also have some fluctuating ear pain and pressure.  I guess I have to be thankful that it isn't severe and wildly unstable -- I'm praying it never reaches that point.  I guess not all hope is lost because for some people it reduces, and others are able to habituate to it.

 

I know I've mentioned this before, but I also am just incredibly upset with myself that this happened, and I know it is my fault.  I can't blame a doctor, and if I was 100% following a doctor's orders, this probably wouldn't have happened.  There has been an incredible amount of instability in my life, I've moved countless times; I've seen countless providers; nothing has helped; I got stuck on this medication with no way to get off.  I had to move four different times in the pandemic alone.  My mental and emotional health were deteriorating; I was completely alone and abandoned and in a dark place with no support system and no idea what was going on when my health started to unravel.  And that's when I made these awful decisions to start and stop the medication, not knowing how dangerous it was.  By the time I was able to consult a new psychiatrist who I hoped could help, it was too late -- the damage had been done, and they didn't even understand that what had happened was kindling or an adverse reaction.  If they did, maybe they could have told me to not touch another antidepressant, instead of suggesting reinstating (which destroyed me) or going on another one.  I can't believe that I thought after all of these years of being on and off of it I would be able to quit it for good so easily.

 

Anyway, sorry for all of the rambling.  But I will try to survive and keep going.  

[Fosca]

Hi all, just wanted to briefly update and say that I've been having a definite increase in pain, unfortunately.  I don't think I've done a great job of describing my symptoms on here -- I guess I just feel lazy.  But I have aching, burning, nerve pain, pressure, and weird sensations in my head and brain on-and-off all day.  Sometimes this extends down into my neck.  I also have 24/7 unstable tinnitus, weird ear pain, and pressure changes.  Also insomnia.  And of course a host of other symptoms.  It really feels like the drug completely fried my brain and my nerves are now malfunctioning.  I know in hindsight my "micro" reinstatement attempt was a horrible, horrible idea, but there is nothing I can do about the past.  I've been doing more research on here and I'm sure I'm a severe case -- the length of time I was on the drug, the severity of the kindling, the quality and severity of my symptoms points to real "damage" to my nerves.  If anyone has recovered from "burning brain" and significant nerve pain in their head, please let me know. 

 

I will be in this for the very long haul, I am sure.  I'm trying to figure out how to create a life given my degree of disability.  What will keep me going?  What do I have to live for?  In truth, I don't have much now.