Fosca: fluoxetine hypersensitivity - please advise

[getofflex]

20 hours ago, Fosca said:

I'm afraid and don't know what to do since I can't reach my prescriber.

In most cases, the advice of your prescriber will directly conflict with that of this site.  They will put you on drugs, this site is for going off drugs.  They also tend to reinstate people at too high of a dose, which often causes kindling and adverse reactions.  

 

Hypersensitivity and Kindling

 

What I see so many times, is people getting worse and worse in withdrawal, because their doctor keeps trying different drugs.   Please make a decision whether you want to use the advice of this site, or the advice of your prescriber.  We cannot fix the mess that your health care person makes if you keep going back to the drugs they prescribe.  The health care system knows almost nothing of how these drugs affect the brain, and the withdrawal issues.  They are in denial about it.  

Edited November 27, 2022 by getofflex

[Fosca]

3 hours ago, getofflex said:

1) attempt a very tiny reinstatement of fluoxetine, not Lexapro.

 

Thank you for your detailed posts.  I was wondering given that I just tried Lexapro for a few days, do you know if I need to wait for it to leave my system before trying the fluoxetine?  I will also ask my prescriber -- hopefully I can reach them tomorrow.

[getofflex]

On 11/27/2022 at 4:41 PM, Fosca said:

I was wondering given that I just tried Lexapro for a few days, do you know if I need to wait for it to leave my system before trying the fluoxetine?

No, you don't.  Please add the Lexapro to your drug signature, thanks. 

[Fosca]

5 hours ago, getofflex said:

No, you don't.

 

Ok, thank you.  I'm probably not going to touch anything at the moment -- am getting windows and waves of symptoms from the trial of Lexapro and want to see how this plays out and then reassess.  I'm hoping I don't get a significant, permanent worsening of my condition.  I know Lexapro was a mistake but things have gotten extremely bad here on multiple levels -- don't really have time right now to write about my situation in detail -- and I caved into trying another drug.  I contacted my prescriber and described my situation and she said that I should "push through" and keep taking the Lexapro... no way.  That's what I did with the Prozac for 20+ days and it completely screwed me.

[getofflex]

On 11/28/2022 at 10:39 PM, Fosca said:

I caved into trying another drug. 

by this you mean the Lexapro? 

 

On 11/28/2022 at 10:39 PM, Fosca said:

I contacted my prescriber and described my situation and she said that I should "push through" and keep taking the Lexapro... no way. 

We see this so many times here. You are smart for listening to your body, and not this prescriber.  You did the right thing, in my opinion. 

 

This is not permanent.  But, once we further destabilize ourselves, it will take a while for the nervous system to sort itself out.  

 

What you need now is lots and lots of time, natural self care, and patience.  Eventually, your nervous system will sort itself out. The fact that you are getting windows is a very good sign. What non drug skills are you using to help yourself?  

[Fosca]

8 hours ago, getofflex said:

by this you mean the Lexapro? 

 

Yes, I was referring to the Lexapro I agreed to try but stopped (added to my signature).

 

8 hours ago, getofflex said:

The fact that you are getting windows is a very good sign.

 

I'm getting windows / waves specifically from the Lexapro trial (1 mg for 3 days), which hopefully means I'll go back to my previous baseline.  Unfortunately, though, before this "ripple" caused by the Lexapro, I was not getting any windows or waves.

 

8 hours ago, getofflex said:

What non drug skills are you using to help yourself?  

 

I'm not sure -- I'm stuck in extremely severe rebound depression and struggling to function.  Maybe I will post in more detail later, but for now I think because of the Lexapro I'm really out of it.

[getofflex]

Here are some topics that may help.  The first 2 links are to YouTube videos of binaural beats, so you don't have to do anything - just plug in, listen, and chill.  

 

https://www.survivingantidepressants.org/topic/5132-audio-tracks-for-depression-anxiety-recovery-includes-binaural-beats-isochronic-tones/?do=findComment&comment=65565

 

https://www.survivingantidepressants.org/topic/5132-audio-tracks-for-depression-anxiety-recovery-includes-binaural-beats-isochronic-tones/?do=findComment&comment=139048

 

Steps for Managing WD Symptoms

 

Neuro Emotions

 

https://beyondmeds.com/?s=depression

 

https://beyondmeds.com

 

Edited December 1, 2022 by getofflex

[Altostrata]

How did you feel while you were taking Lexapro for 3 days? How are your symptoms different now?

[Fosca]

On 12/5/2022 at 1:10 PM, Altostrata said:

How did you feel while you were taking Lexapro for 3 days? How are your symptoms different now?

 

I reacted really strongly to the Lexapro even though it was only approx. 1 mg for 3 days.  I experienced a ton of symptoms.  On the positive side -- it gave me more energy, elevated my mood, relaxed my jaw muscle / helped my facial / TMJ pain, and reduced my hyperacusis.  I could feel a serotonin boost from it, but it felt WAY too strong, almost like I was overdosing on the medication, and it came also with a ton of negative effects.  It felt like I had drunk a ton of caffeine -- felt very jittery, spaced out, and light-headed.  It felt like there was too much electricity running through me and I couldn't sleep at all.  At times (especially when trying to lay down to sleep) I had the sensation of electricity buzzing in my brain -- like my brain was being overstimulated.  I also had some episodes of dpdr where I felt completely spaced out and like I had no idea what was going on and distant from myself and surroundings which really freaked me out.  My tinnitus was a bit louder.  Also despite the medication relaxing my jaw muscle, it caused muscle weakness and muscle tightness and cramping on-and-off in all the other muscles in my body, face, and neck.  Like the muscles in the lower half of my body would randomly tighten up during the night while lying in bed, or suddenly muscles in my neck and face and arm would have a very tight squeezing sensation.  Or I'd have a painful cramping sensation in my chest.  I also got painful joint aching in my right hand and right foot.  Overall my body just felt out of control and the dpdr in particular scared me, so I just stopped taking it.  These didn't feel anything like normal start up side effects and I didn't want to try "pushing through it."  Overall, it reminded me a lot of my experiences with reinstating Prozac (which I did try to push through and was a disaster), only the Prozac caused more burning sensations, while the Lexapro seemed to effect my muscles more.

 

It's been 3 weeks since I stopped the Lexapro and I'm getting windows and waves - it definitely riled up my system, but it seems like most of it will resolve slowly with time -- waves of anxiety, brain buzzing / light-headedness, muscle tightness etc. - basically over-activation.  The thing I'm most concerned about though is that my hyperacusis and jaw / neck / face / TMJ pain is back with a vengeance (probably worse than it was before I tried Lexapro) and it's quite debilitating.  I think basically I'm dealing with chronic muscle tightness and spasming in my face and neck and it's causing a bunch of pain.  I also get jaw clicking and popping etc.  There's a lot going on with the muscles / joints / tendons in my face, neck and ears, but I'm tired so that's all I'll write for now.  

[Fosca]

Do my posts need to continue to be moderated?  Is that restriction ever removed?  Just wondering.

 

[getofflex]

It sounds as though you are recovering from your attempted reinstatement of 1 mg Lexapro, and also the withdrawal from fluoxetine.  I believe that with natural self care, you will slowly continue to recover.  

 

TMJ, and other related stuff

 

Sensitivity to Sound

[Foxclover6]

I have/ had everything you have had, because of a CT, our bodies develop very high systemic inflammation when we stop the medication,  my cholesterol also went up,  I had a test done that's usually used to diagnose CIRS, but I believe it is due to the cold turkey that it came back very high. I hope you're doing ok,  it's hard to read such a highly intelligent person become so distraught over the long long stretch of this process. You're going to get better.  💖 

[getofflex]

On 12/22/2022 at 3:51 PM, Fosca said:

Do my posts need to continue to be moderated?  Is that restriction ever removed?

After conferring with the other staff, I was informed that your posts were put on moderation for posting about suicide.  Because most people here are in a very fragile state, this is very upsetting to other members.   We can remove moderation if you are no longer posting about suicide, and engaged in healthy ways of coping with your situation.  

 

 

Non Drug Ways to Cope with Withdrawal Symptoms

Edited December 26, 2022 by getofflex

[Altostrata]

You might try stretching, acupuncture, physical therapy, chiropractic, osteopathic manual therapy, or massage for the muscle tightness and pain.

 

Many people find fish oil and magnesium supplements helpful, see

 

https://survivingantidepressants.org/index.php?/topic/36-king-of-supplements-omega-3-fatty-acids-fish-oil/

 

https://survivingantidepressants.org/topic/15483-magnesium-natures-calcium-channel-blocker/

 

Magnesium oil or Epsom salts are good for muscle aches. You might try a little bit of one at a time to see how it affects you. Please let us know how you’re doing.

[Fosca]

On 12/25/2022 at 10:47 PM, Foxclover6 said:

I hope you're doing ok,  it's hard to read such a highly intelligent person become so distraught over the long long stretch of this process. You're going to get better.  💖 

 

Thank you, I appreciate it.  I hope you get better, too.

[Fosca]

On 12/26/2022 at 9:47 AM, getofflex said:

After conferring with the other staff, I was informed that your posts were put on moderation for posting about suicide.  Because most people here are in a very fragile state, this is very upsetting to other members.   We can remove moderation if you are no longer posting about suicide, and engaged in healthy ways of coping with your situation.

 

I understand how that is upsetting to other members  -- I will try my best not to make those posts going forward since I know they are not helpful.  I would appreciate being able to post without waiting for moderator approval, but I understand if you guys are not comfortable with that.

[Fosca]

On 12/27/2022 at 3:24 PM, Altostrata said:

 

Magnesium oil or Epsom salts are good for muscle aches. You might try a little bit of one at a time to see how it affects you. Please let us know how you’re doing.

 

Thanks for this and the above suggestions.  I tried small amounts of magnesium glycinate months ago and had an adverse reaction -- it caused tingling / pulsing and painful muscle cramping -- lasted about 24 hours I think.  Maybe I'll try mag oil or epsom salts at some point but I'm not sure.  I'm highly sensitive to a lot of things, like Vitamin D, for example.

[Fosca]

5 weeks post-Lexapro trial, struggling physically and emotionally.  I think this has set me back and messed me up more than I anticipated in the immediate aftermath.  Worsened insomnia (for example, I only slept 1 hour last night, worst night I've had in a long time); worsened tinnitus (not drastically but definitely noticeable, and my tinnitus has unfortunately just continually worsened over this entire 10 month journey); I now have chronically tight/stiff neck, shoulders, and lower back; I also now get pulsing / twitching / aching sensations in my neck and sometimes parts of my head -- almost like there's an electrical current running, but luckily not as painful; among other things -- like more widespread muscle tightness across my face, which sets in after too much talking or sound exposure it seems.  On the plus side my jaw pain has been not so bad over the past couple of weeks. 

 

I'm hoping this slowly gets better with time and it seems like I am still getting some, albeit less noticeable, windows-and-waves, but I'm really disheartened.  I feel like I made a huge mistake and worry that I am back at square one, or will not recover from this.  I am really mad at myself for trying the Lexapro. 

 

I also just feel like I'm at a loss as to what to do and am second guessing myself constantly.  Sometimes I even wonder -- maybe I should have tried the Lexapro for longer?  Though I think that would have probably been a bad idea.  Then I find myself thinking, well maybe I should try 0.1 mg or less of fluoxetine again, or I should try an extremely small dose of Lamictal, or experiment with small doses of NAC, or something else. 

 

Before the Lexapro trial, I went 9 months with no drugs, no caffeine / alcohol, virtually no supplements, but didn't feel like I was seeing much improvement, and in fact a worsening of some symptoms, which is why I got desperate and agreed with my family and doctors to try the Lexapro.  Now that I'm telling them I'm still messed up from only 1 mg of Lexapro taken five weeks ago... of course they are skeptical.  I guess I would be too if I wasn't experiencing this firsthand.  I just don't understand how any of this is possible and I feel like I'm going crazy sometimes.  How am I this sick all of these months later?  How is there seemingly no solution other than to suffer for many years and hope things get better?  Why am I (and people on forums like this) seemingly the only people who have ever heard of or experienced this?  Why has no doctor even heard of anything like this happening?  I just don't get it, and I feel very alone.  I am suffering a lot and sometimes I don't know how long I can keep going like this.  I don't know if I should risk trying something else.  It just seems like there has to be some solution other than suffering for years on end with my life indefinitely on hold.

[Altostrata]

You went on and off fluoxetine for 13 years. No one event brought you to this point.

 

Your symptoms, including sleep disruption, will fluctuate and change into other symptoms. See The Windows and Waves Pattern of Stabilization

 

You might look into addressing your symptoms one area at a time. For example: Tight and painful muscles. You have gotten suggestions for this. Please read this topic from the beginning.

[getofflex]

Please read this link, and try to change your way of thinking about this.  I will help a lot.  

 

Steps for Managing WD Symptoms

 

Your nervous system is destabilized, and this takes a very long time to recover from.  Please carefully read this link, to understand what is going on. 

 

What is Happening in Your Brain? (Explains why recovery takes so long)

 

Also, 

 

How Long is Withdrawal Going to Take?

 

It is important to find non drug ways to cope with your symptoms.  Jumping on and off drugs puts you at risk of further destabilizing you.  

 

Non Drug Ways to Cope with Withdrawal Symptoms

 

You can and will recover from this, if you take care of yourself properly. I know it is a long and grueling road to recovery, but time and patience, and learning acceptance and non drug coping skills and natural self care are the way to get out of this mess, in my personal opinion.  

 

 

Edited January 2, 2023 by getofflex

[Fosca]

Thank you all for the suggestions and links.  I'll try to work through them.  It's difficult to do pro-active things because I'm very exhausted, depressed, and burned out.

 

I've used this thread a lot like a journal to vent, so sometimes I just chronicle my thoughts.  Hope that isn't too annoying.  I'm not always looking for an answer, just a place to share, so feel free to ignore.  But I will try to monitor my content as to not be triggering to other members. 

[getofflex]

It's fine to vent and chronicle your thoughts.   A part of the goal of this forum is to encourage members to learn nondrug coping skills, so that we can find a decent life without psych drugs.  I know it's very hard to change our way of thinking and dealing with life, because I've been there myself.  

[Fosca]

Update - 2 months post trying 3 doses of Lexapro.  I was wrong in my optimistic initial assessment of the situation -- I am not improving or returning to my pre-Lexapro baseline.  Instead I am worsening.  I have now completely lost the ability to sleep.  Muscle issues are not improving.  Muscles in my jaw, head, face, neck, shoulders and back are chronically tight.  Any sort of stimulation worsens this.  For example, hearing sounds causes muscles across my face, head and neck to squeeze uncontrollably.  I'm concerned because I've read that these kind of muscle issues can become hardwired via neuroplasticity.  If anyone knows of a case of chronic muscle tension like this that has gone away on its own, let me know.

 

Feeling completely defeated.  I don't know what to do.

 

[Fosca]

Hi everyone, I wanted to give an update - I will try to be coherent and I'll underline the important parts. 

 

I'm still dealing with symptoms like insomnia, constant tinnitus, sensitivity to sound, chronic muscle pain and tension in my face and neck (which worsens with sound exposure), feeling on edge all the time and hypersensitive to stimulation.  Struggling increasingly with anxious feelings and energy, racing thoughts.  Having problems thinking clearly and just really not very functional at all.  Mostly homebound and battling day-by-day and hour-by-hour.  I'm trying things like physical therapy, mindfulness classes, yoga, but my system is so out-of-whack it's hard to get much out of it.  I don't really get windows and waves; it's more waves and waves, or just little ripples -- and I haven't made noticeable improvements since all of this began a year ago.

 

Based on all of the above, I think I am going to try meds again, even though I know it's a risk and it's going to be a bumpy ride.  Maybe I'll chicken out last minute, but I feel like I really need to try something.

 

It was suggested by the mods I could try a reinstatement of my original drug, fluoxetine, at 0.1 mg.  Overall I think this makes the most sense.  I have thought about trying a different SSRI, because I did some genetic testing that shows I have moderate drug-gene interaction with fluoxetine.  Apparently I don't metabolize the drug very well and am prone to more side effects on it.  Nevertheless, it seems like trying another SSRI at this point is probably more of a gamble, and I understand that it's suggested to reinstate the same drug you withdrew from.  I think I'm going to reinstate at below 0.1 mg, maybe only 0.01 mg as a tester since I'm so sensitive.  I need to get the prescription though and then calculate the dilution and make sure I have everything ready to go.  I will report back on that.

 

I've been reading up more on reinstatement and up-dosing.  I think my problems in the past with reinstatement were related to not being on the right dose and not giving it enough time, which can apparently take months.  So I'm going to start very low and slow, and hopefully be prepared to wait it out for awhile, and deal with the initial increase in activation / adverse effects.

 

My other choice would be to try lamotrigine at a very low dose.  From what I've gathered this is a riskier drug and riskier option, though it does work well for some.  I do wonder if it would work for me because I have so many symptoms of hyper-alerting / hyper-activation. I also have wondered if maybe my unipolar depression over the years has become slightly bipolar, though I've never been diagnosed with bipolar.  I almost feel like my current symptoms are "mixed episode"-like.  That said, though, my genetic testing says I'm an ultra-rapid metabolizer of lamotrigine.  I read up on lamotrigine on the forum, and I know it's suggested that if you do try it use a very small dose, less than 5 mg.  What would be the easiest way to get that small of a dose, since I think the standard tablets are 25 mg?  I will ask my prescriber as well when I see her.  Also are there any doctors currently practicing in the U.S. who know how to use these tiny lamotrigine doses?  If so I would love to try and reach out to them.  Also any doctors in general that know about withdrawal issues who are currently practicing.

 

In summary: my current game plan is to try to reinstate very low dose of fluoxetine (probably 0.01 mg to start as a test), and be prepared to ride out the initial activation or adverse effects.  If that doesn't work, plan B would probably be to try low dose of lamotrigine.

 

If anyone has any thoughts or suggestions let me know.   Thanks for reading.

[SertralineIssues29]

Hey @Fosca just read through your post and I've seen your last one was saying you was going to reinstate, I wanted to ask how that did for you?

 

Keep us posted 

 

SI xx 

[Fosca]

Hey @SertralineIssues29, sorry for the delayed reply -- thanks for stopping by my thread. 

 

I still haven't reinstated fluoxetine or tried another drug like low dose lamictal.  In my case I think it would be risky because of how sensitive I am.  Based on past experience, if I reinstated fluoxetine I'm almost positive I would get bad activation symptoms (increased anxiety, burning, etc.).  I would then have to give it lots of time and carefully increase my dose, hoping that my body would eventually adjust to the medication and start to relax.  It's still not off the table as an option for me, but for now I am holding off and seeing how things develop.

 

(That said, I do think reinstatement is advisable in most cases.)

 

Overall I think I am doing slightly better, but progress is very slow and frustrating.  I've been off for over a year at this point.

[Fosca]

Have not updated in awhile.  Am not doing well and will need to try medication again.  Not exactly sure what I'm going to do, but I have to do something.

 

I've tried and failed to reinstate fluoxetine multiple times in the past.  I've also tried Lexapro very briefly for 3 days.

With both meds I noticed improvements in my mood and energy, but I also got a bunch of crazy other side effects -- stuff like extreme jitteriness, burning headaches, muscles randomly tensing, etc.  Does the fact that I showed benefit in mood and energy indicate that my body might be able to adjust to the reinstatement eventually, and that the extreme start up side effects would go away?  Would be curious to hear other people's experience with reinstatement.

[jack9]

Hey @Fosca

 

I saw your story and symptoms 

 

Can i ask you if you still have ear fullness and pain or did it get better a bit ?

[Fosca]

Hi - haven't heard from anyone - I know my thread is quiet these days.  I need to go back on medication - I don't think I'm going to make it much longer.  I am still dealing with constant tinnitus, constant muscle tension in my face, insomnia, depression and suicidal thoughts.  After the length of time I've been off would the recommendation be to try only 0.1 mg of fluoxetine? 

[Fosca]

On 6/19/2023 at 10:30 AM, jack9 said:

Can i ask you if you still have ear fullness and pain or did it get better a bit ?

 

I don't have now what I described earlier as ear fullness and pain.  I do have constant muscle tension though in my face and jaw and I think the muscles connected to (or in) my ear / eustachian tubes might be vibrating  / spasming.  So my symptoms are a bit different, but I think it's all related.

[jack9]

So you had the ear symptoms but they kinda went away and you think its because of muscle stiffness ? I have muscle stiffness too as you described but i think the ear symptoms are ototoxicity from the drug maybe 🤔

[TrazodoneShouldBeIllegal18]

@Fosca I m dealing with the exact same issues. If no one else on planet earth will understand you I can. Feel free to personally reach out to me. I would be willing to talk to you directly about what we both are going through. I feel your pain and suffering just like you on a daily basis.

[Fosca]

On 6/24/2023 at 5:17 PM, jack9 said:

So you had the ear symptoms but they kinda went away and you think its because of muscle stiffness ? I have muscle stiffness too as you described but i think the ear symptoms are ototoxicity from the drug maybe 🤔

 

Yes, I still have ear symptoms (like tinnitus) but I've come to the conclusion that most of the issues are related to muscles in my jaw, TMJ, etc.  I think most ear issues related to antidepressants (at least SSRIs) are not ototoxicity, but rather neurotransmitter imbalance of some sort.

[Fosca]

On 6/26/2023 at 7:09 AM, TrazodoneShouldBeIllegal18 said:

I m dealing with the exact same issues. If no one else on planet earth will understand you I can. Feel free to personally reach out to me. I would be willing to talk to you directly about what we both are going through. I feel your pain and suffering just like you on a daily basis.

 

Thank you for reaching out -- so sorry for what you are going through.  It does seem we have some similar symptoms like tinnitus and ear crackling.  I am starting back on medication to see if I can get something to work, because I can't take this anymore.

[Foxclover6]

Going back on seems so inviting , but holy crap this has sucked so badly , I don't think it could ever go well. 

[Happy2Heal]

On 6/19/2023 at 8:15 PM, Fosca said:

After the length of time I've been off would the recommendation be to try only 0.1 mg of fluoxetine? 

 

On 4/7/2023 at 4:35 PM, Fosca said:

I still haven't reinstated fluoxetine or tried another drug like low dose lamictal.  In my case I think it would be risky because of how sensitive I am.  Based on past experience, if I reinstated fluoxetine I'm almost positive I would get bad activation symptoms (increased anxiety, burning, etc.). 

 

 

it's totally understandable to have days or times when you are just fed up with it all, but as you can see, you answered  your own question

 

it's not a good idea to take any drug to fix something that was caused by a drug and that will almost surely will go away if given time

 

yes it's a long time, and it sucks but do you really want to open up that old can of worms again, or worse, start with a new one?

 

it's always your decision but I don't think anyone on this forum would recommend it

 

 

you've done great holding on all this time.

maybe check out Bob and Brad on YouTube, they may have suggestions for helping you with your jaw

 

I had some severe jaw tension last fall and found some great tips that helped me a lot. they seemed really strange at the time like putting your tongue on the roof of you mouth and slowly opening and closing your mouth but WOW it works!! 

 

give it a try ok?

also maybe massage?

heat or cold?

relaxation tapes?

 

trying to brainstorm for you

❤️