ScaredDad: Lexapro Reinstatement Help

[ScaredDad]

18 hours ago, Tweed9674 said:

I'm sorry that it's all been such a nightmare for you.

I really wish I had an exact answer to all of this. Sadly, we are left with trial and error 😕 

Thanks Tweed. It’s the cross I must bare but I can do it I think. Today has been about the usual but I’m trying to stay off the internet waves a bit so sorry for the long delay. I believe we all will heal and am trying my best to stay calm and hopeful.

[Tweed9674]

5 minutes ago, ScaredDad said:

Today has been about the usual but I’m trying to stay off the internet waves a bit so sorry for the long delay.

This is a good idea I think. Take care ❤️ 

[ScaredDad]

Hey guys I’m so scared. I had the worst night yet last night and just don’t seem to be doing better. At what point would you reduce? Has ANYONE ever seen someone in my case? I’m so desperate

[ScaredDad]

Are kindling / hypersensitive reactivity symptoms different than withdrawal? My symptom profile does seem pretty different from pre-reinstatement. 

Hindsight is 20/20 right? I can identify 10 things I’d change with me and this drug. But this dose is legit killing me. I’m working with my family to garner support to start marching down. I’m just saying I can’t make 1.5 years of a taper feeling like this. I’ll have to go faster.

[LostInCanada]

2 hours ago, ScaredDad said:

At what point would you reduce?

Think about what Mark said. You can reduce at any point. I personally do not think this dose is your sweet spot. Remember what he said. You can walk it down slowly. 

I know when I reinstated it was too high and I was encouraged to stay at 5 mg because it had been 2 months at that dose. I honestly wish I would have went lower. 

Trust yourself.

[FindPeace]

Hi Scared Dad, 

 

So sorry to hear you are getting despondent again and back in the same mindset as before you spoke to and were reassured Dr Horowitz. 

 

54 minutes ago, LostInCanada said:

Think about what Mark said. You can reduce at any point.

I wasn’t on the call, but from your notes it looks like he said that people have felt worse on a dose and still acclimatized. He also said you can trial a test reduction after a few more weeks of holding and see if it helps.
 

It’s reasonable to assume he suggested trying a reduction after a few more weeks of holding so that you can at least get enough time under your belt so that any symptoms that arise from trailing a reduction cannot be confused with the changes you made prior (the the initial 3 fast tapers and 3 reinstatements, the drop from 10mg to 1mg and the daily incremental tapers from 2.5 to 2.3).

 

3 hours ago, ScaredDad said:

Has ANYONE ever seen someone in my case?

I’ve seen many in your situation, who are destabilized after too many dose changes, and while experiencing the fallout of that, are suspecting that they are not tolerating the medication anymore. Although they may not share the exact same drug history as you, they are destabilized in the same way. Many are experiencing withdrawal akathisia. We are all discreet nervous systems, so everyone is prone to feel that their suffering is the greatest. 

 

1 hour ago, ScaredDad said:

Are kindling / hypersensitive reactivity symptoms different than withdrawal?

I don’t think there is a clear cut answer for this. If you reported that when you took your dose, it ramped up into akathesia, an allergic reaction, or dangerously high blood pressure than I would say it’s pretty clear. 
 

Did you experience kindling? I think so, because you tapered and reinstated your medication 3 times, with signs of growing instability along the way. Does that warrant tapering off again. Not necessarily because you may stabilize on this dose and as discussed with Mark, it may be premature. 
 

Are you hypersensitive. I think yes, by your reports anything can set you off, even psychological factors like catastrophic thinking, rumination, or sleep deprivation. Does that warrant prompt discontinuation? I don’t think so: you may be overly sensitive to the medication in your state, but not having an adverse reaction. 
 

2 hours ago, ScaredDad said:

Hindsight is 20/20 right? I can identify 10 things I’d change with me and this drug.

It won’t do you any good to beat yourself up about the past. What’s done is done, you have to work with what you have. Although in crisis it is hard to control your mindset, I assure you that it is possible.  

 

2 hours ago, ScaredDad said:

But this dose is legit killing me.

If you are sure that it is, then you must follow your  intuition. Only you can decide what’s best for yourself by listening to your body. But beware of the power of the mind which is in panic, and try to make decisions in calm and rational manner. 

 

2 hours ago, ScaredDad said:

I’m just saying I can’t make 1.5 years of a taper feeling like this.

Take things one step at a time and avoid jumping to conclusions. Ideally, hold a couple more weeks and introduce a small trial reduction and hold again for observation. If you can’t hold then jump to a trial reduction. If you are convinced that you just go without medication, then plan a reduction schedule that you think will minimize the impact. If you can’t do that then abort the reinstatement, but be prepared for possible protracted withdrawal. 
 

I get that you are suffering so much, and there is no clear path on how to feel better. But it is probably possible to feel even worse, so really think about what you want to do, and avoid acting out of fear or rashness. The goal should probably be to feel bad but not terrible. 
 

I assure you one day you will look back on all this and feel so glad that you are in a better place. Hopefully in looking back you can feel like you made the best decisions. Time is the great healer. Just because it feels like this will last forever doesn’t mean it will.

 

FP 
 

 

 

[ScaredDad]

@FindPeace thanks as always FP. You are truly so diligent in your responses! I appreciate all the thoughtfulness throughout! I’m trying to keep my head down it’s just I feel I am getting totally rocked by the dose. I am taking the route as recommended which is holding as long as I can but soon considering a reasonable drop as Mark said could help find a place that is more comfortable.

[Catwoman73]

I've been offline all day today- just catching up.  I'm so sorry to hear you're feeling so rough, @ScaredDad.  I think @FindPeace really said it all.  I would hate to see you make abrupt and emotional decision about dosing, and end up feeling worse.  If you get a window this evening, when your thoughts are more clear and you are able to separate the emotion from the situation (even a little), take that time to really consider what you want your next steps to be, knowing everything that you now know, and considering the views of all the various experts you've spoken with. 

 

I'm very glad to hear your whole family sat in on your visit with Dr. Horowitz- it's good to have everyone one the same page.  I plan to do the same with the NP that will be assisting me with my taper.  I want my husband and daughter to really understand what might be to come for me. 

 

Hang in there my friend... I'm thinking of you, even when I'm not around... I spent the day doing some much-needed self care today.  But you were in my thoughts!

[Dee12h]

I’m in this situation as well, not knowing if it’s drug adverse reaction or WD- probably both.
I went up & down on my dose as well before this happened. I do think holding is best for me RN bc I have been slightly better this past week, after holding 2 weeks on what I thought was a little too high dose. Following your thread closely.

[FindPeace]

9 minutes ago, Catwoman73 said:

I plan to do the same with the NP that will be assisting me with my taper.

Wow that’s so great @Catwoman73 that you found someone to assist with your taper. Hopefully they are up to speed with the Maudsley guidelines. 

 

I’m in Canada and having a hard time finding this. I can’t get liquid Effexor and a prescriber that knows what they are doing. 
 

I’ve got a promising lead on a clinical pharmacist who works at the University of British Columbia. We’ll see. 

 

Hang in there @ScaredDad. You have everyone’s unconditional support, what ever you decide to do.

[ScaredDad]

39 minutes ago, Dee12h said:

I’m in this situation as well, not knowing if it’s drug adverse reaction or WD- probably both.
I went up & down on my dose as well before this happened. I do think holding is best for me RN bc I have been slightly better this past week, after holding 2 weeks on what I thought was a little too high dose. Following your thread closely.

I’ll let you know if I find anything ground breaking but you’re so close to off you got this.

[ScaredDad]

41 minutes ago, Catwoman73 said:

Hang in there my friend... I'm thinking of you, even when I'm not around... I spent the day doing some much-needed self care today.  But you were in my thoughts!

Thanks @Catwoman73 not doing anything yet. I will keep you updated. It means so much that you always stop by even after a good day of taking care of yourself. You are such a good person and I’m happy to know you.

[ScaredDad]

37 minutes ago, FindPeace said:

Hang in there @ScaredDad. You have everyone’s unconditional support, what ever you decide to do.

Thanks as always for the continued support you have no idea what it means to me and even my family! I know you’ll find a prescriber.

[Catwoman73]

1 hour ago, FindPeace said:

I’m in Canada and having a hard time finding this. I can’t get liquid Effexor and a prescriber that knows what they are doing. 

@FindPeace- I am in Canada is well- since you are in BC, I can give you a couple a name!  This is who I'm working with:

 

https://www.mindfulmedicinebymonica.ca

 

She is well-versed in hyperbolic tapering, and has been part of the outro program.  She said that she is getting close to capacity right now, so if you're interesting in working with her, reach out soon.  She does do a 15 minute meet and greet for free so you can get a feel for what she's like, and whether or not it would be a good fit. She is licensed in BC and Ontario- I'm working with her virtually from Ontario, but she resides in BC. 

 

Sorry to hijack your thread, @ScaredDad- I just wanted to get this info to FindPeace ASAP!!! 

[FindPeace]

3 hours ago, Catwoman73 said:

since you are in BC, I can give you a couple a name! 

 

https://www.mindfulmedicinebymonica.ca

 

@Catwoman73Outro: Duh - of course! thank you v. much 🙏 

[Catwoman73]

10 hours ago, FindPeace said:

@Catwoman73Outro: Duh - of course! thank you v. much 🙏 

You're welcome... geez, my editing/English was not so good there lol.  I thought I had a second name, but she's not taking new patients at the moment!

 

@ScaredDad- how are things this morning?

[ScaredDad]

44 minutes ago, Catwoman73 said:

@ScaredDad- how are things this morning?

It has been super tough. I feel like my wife is starting to like lose patience with this and it’s wearing on me. I say that just because of some comments she said not my belief that she feels that way in heart.

 

im tired. My stool has very strange white mucus in it and some slight bright red blood coating. This is destroying me head to toe. I’m so close to starting to go down in dose. So scared 

[Catwoman73]

11 minutes ago, ScaredDad said:

It has been super tough. I feel like my wife is starting to like lose patience with this and it’s wearing on me. I say that just because of some comments she said not my belief that she feels that way in heart.

 

im tired. My stool has very strange white mucus in it and some slight bright red blood coating. This is destroying me head to toe. I’m so close to starting to go down in dose. So scared 

Trust your gut instincts- if you feel like you need to try to decrease, we're here to support you, 100%!

 

Just like you are taking care of yourself right now, your wife needs to do the same!  If she's frustrated and exhausted, that's definitely a sign she should step away, and do something that will help her get back to her baseline. I know you have your mom's support as well (and you had a friend too, I think?  That had suffered from serious depression previously?)- maybe they can spell each other off a little bit so everyone gets a break.  When I was working, many of my patients had TERRIBLE diseases, like ALS.  I always used to worry excessively about the caregivers- burnout is very real, and very debilitating.  Over time, I started counselling my patients and their families about the importance of self-care for EVERYONE in the circle of care, even before their illness got severe.  Unfortunately, you're already in the thick of it, but it's not too late to develop a plan.  I don't know what types of healthcare services you have available where you are, but here, we do have respite care available, so that caregivers can get a break- that might be something that you can tap into.

 

I've had the mucus issues with my stool many times as well... I never really connected it to the drugs, but it's certainly possible!  And the blood, well, not to get too graphic, but is it just coating the outside of your stool?  That could just be a hemorrhoid... I have them (thank you childbirth!), and when my gut is flared up, the hemorrhoids flare up too, and cause some bleeding.  

[ScaredDad]

Thanks for the response @Catwoman73

I have care for me available with my mom it’s just (1) accepting that a 30 y/o father may not be able to help much with the kids and (2) asking for more help from family which we would do. I am trying to give her all the space I can. She’s at the pool with our daughter and her family today while I’m with my mom. This is just purely insane that it’s done to this and I’m still on the medicine. I am for sure on the verge of testing reductions but just not there yet with everyone in my personal life’s support. I wish I cut back three days after the increase like I knew I should a while back

[Catwoman73]

6 minutes ago, ScaredDad said:

Thanks for the response @Catwoman73

I have care for me available with my mom it’s just (1) accepting that a 30 y/o father may not be able to help much with the kids and (2) asking for more help from family which we would do. I am trying to give her all the space I can. She’s at the pool with our daughter and her family today while I’m with my mom. This is just purely insane that it’s done to this and I’m still on the medicine. I am for sure on the verge of testing reductions but just not there yet with everyone in my personal life’s support. I wish I cut back three days after the increase like I knew I should a while back

There's no point looking backwards.  Really- it serves no purpose, and I think ruminating over our 'mistakes' only serves to set us back.  And I really don't believe in 'mistakes'- every decision you have made was just you trying to protect yourself, and make yourself feel better.  And trusting in experts that deal with this all the time.... but even experts don't have all the answers!  Look back on the person you were when you made those choices with compassion, because that's what you deserve. 

 

It is going to be all hands on deck for a while, until you become more stable.  Yes, the timing is absolutely terrible, with a baby on the way, but as a family (including your mom!), you will get through it.  I think the only pressure on you right now is the acceptance piece- the sooner you just accept that this is your reality for the time being, the sooner you will have a plan in place for how you are all going to manage this together, especially once the baby comes.  I completely understand the disbelief and shock that this where your life is at, though- this is one of my biggest struggles.  I used to be super fit, active, bright and quick-witted... all of that is gone now, and I'm really having trouble letting go.  So I'm not talking about the need for acceptance like it's an easy thing AT ALL.  But it is a worthy goal, one that will make your life much easier for the time being.  At least that's what I keep telling myself when I start ruminating about what might have been lol...

[ScaredDad]

Still here. Still fighting every minute and praying multiple times a day that I can settle on this dose. I don’t want to start moving until I know because it just starts things in a direction. Ya know? 

[Catwoman73]

1 hour ago, ScaredDad said:

Still here. Still fighting every minute and praying multiple times a day that I can settle on this dose. I don’t want to start moving until I know because it just starts things in a direction. Ya know? 

Thinking of you as always, @ScaredDad!  One day, one minute at a time!  

[ScaredDad]

@Catwoman73

 

🙏 thanks Catwoman. It really hasn’t gotten any easier but I’m keeping faith I can heal. I “built” a crib last night and then balled over it but I did it. 

[Tweed9674]

2 hours ago, ScaredDad said:

@Catwoman73

 

🙏 thanks Catwoman. It really hasn’t gotten any easier but I’m keeping faith I can heal. I “built” a crib last night and then balled over it but I did it. 

  

💪 💪

Keep fighting back ❤️ 

[ScaredDad]

8 minutes ago, Tweed9674 said:

  

💪 💪

Keep fighting back ❤️ 

Thanks Tweed I am. I’ve tried everything in me to make this hold work and have a few more left in me but after that I’m going down and I’m using this as my guide. It may be somewhat aggressive at points but these reactions have driven me crazy. I have to get to where they end or at least are more tolerable. 
 

2) If you are suffering adverse drug effects, you may wish to taper faster, such as 10% every 3 or 2 weeks, but you need to balance the adverse drug effects vs risk of withdrawal if you taper too fast. You can have both adverse drug effects AND withdrawal symptoms, which you will not like.

 

….. this is from earlier on in the taper section

 

If you feel adverse drug effects, they tend to reduce along along with dosage reduction, even if you follow this conservative taper, it is likely you will feel less intense adverse drug effects after a few reductions. They probably will continue to get less intense as you continue a gradual taper.

 

[ScaredDad]

@Emonda

@LostInCanada @LotusRising

 

have you guys ever seen someone go through this you can recommend I read about? LostinCanada mentioned this ages ago. Just trying to plan for everyone reading. I’m still trying to stabilize if I can. It just does feel like a lot of WD stuff is gone but I’m just reacting now. There is still injury present obviously.
 

2) If you are suffering adverse drug effects, you may wish to taper faster, such as 10% every 3 or 2 weeks, but you need to balance the adverse drug effects vs risk of withdrawal if you taper too fast. You can have both adverse drug effects AND withdrawal symptoms, which you will not like.

[LotusRising]

8 hours ago, ScaredDad said:

It just does feel like a lot of WD stuff is gone but I’m just reacting now.

I don't know of any off the top of my head.

 

What do you mean by this comment? What is happening that you think WD stuff is gone and you're just reacting?

[ScaredDad]

8 hours ago, LotusRising said:

I don't know of any off the top of my head.

 

What do you mean by this comment? What is happening that you think WD stuff is gone and you're just reacting?

It feels like the entirety of my situation revolves around taking the dose. Like the main issue is my reaction to the dose.

[ScaredDad]

@LotusRising like I know there is damage there but I get hit so hard by the dose it feels like a never ending uphill battle against that. 
 

im also so scared about how long the damage has been happening. I first insulted my cns with a Xanax ct in 2017 (I put my full story in here at one point) and that’s when things started. Every time I drank excessively it felt like another little WD all culminating in this. I feel beyond repair. My brain is telling me just survive until the baby is here so she can be born healthy..

[LostInCanada]

22 hours ago, ScaredDad said:

ever seen someone go through this you can recommend I read about?

J1290 sped up his taper. He tried to stabilize but never really did. He said each taper he felt better. He has a very long thread and probably I was reading from the last year and a half. He has not updated after taking a break but he and I have messaged. He has been completely off his drug for 6 months and is doing well. 

I don't know if he fits exactly what you are looking for. I have recently read of members dropping 10% every 3 weeks and doing fine but as they got to smaller doses having to slow it down. You just have to really be able to listen to and understand your body's reactions. That can be the hard part. 

The member Bailey, has been going through hell and it could be viewed as kindling or an ADR but we think it is linked with the liquid form of the drug. She is transferring slowly back to capsules and having some success. When the CNS is so sensitive it is hard to have clear answers. Being analytical about when things became worse is part of unraveling it all. 

[ScaredDad]

25 minutes ago, LostInCanada said:

J1290 sped up his taper. He tried to stabilize but never really did. He said each taper he felt better. He has a very long thread and probably I was reading from the last year and a half. He has not updated after taking a break but he and I have messaged. He has been completely off his drug for 6 months and is doing well. 

I don't know if he fits exactly what you are looking for. I have recently read of members dropping 10% every 3 weeks and doing fine but as they got to smaller doses having to slow it down. You just have to really be able to listen to and understand your body's reactions. That can be the hard part. 

The member Bailey, has been going through hell and it could be viewed as kindling or an ADR but we think it is linked with the liquid form of the drug. She is transferring slowly back to capsules and having some success. When the CNS is so sensitive it is hard to have clear answers. Being analytical about when things became worse is part of unraveling it all. 

Thanks a ton!!!!!!!!!!!

 

I’ve followed Bailey extensively. I pray for her nightly with myself and others. I’ll say beyond a doubt my issue was the off and on, could moving to tablets again help I mean maybe? But I was a hundred miles from stable when I switched to liquid. So idk. It just feels like I’m further poisoning every dose… like every time I take it 3 hours later symptoms increase 2x to 3x.

[LostInCanada]

5 minutes ago, ScaredDad said:

It just feels like I’m further poisoning every dose…

I totally get it. For months after my reinstatement (and even sometimes now), I would say out loud Taking my poison now. 
I’ve come to terms with this necessary evil but it doesn’t mean I like it. 
It is hard not to let the fear/ptsd of it all paralyze you. Trust yourself and be kind. One day at a time. 

[Tweed9674]

4 hours ago, ScaredDad said:

@LotusRising like I know there is damage there but I get hit so hard by the dose it feels like a never ending uphill battle against that. 
 

im also so scared about how long the damage has been happening. I first insulted my cns with a Xanax ct in 2017 (I put my full story in here at one point) and that’s when things started. Every time I drank excessively it felt like another little WD all culminating in this. I feel beyond repair. My brain is telling me just survive until the baby is here so she can be born healthy..

You are NOT beyond repair.

 

You are in a very tought spot right now, i'm not going to downplay that.

 

BUT...

 

Many of us were drinker. I, for sure, was one.

Many of us were under a poly-pharmacy regimen. I too, got benzos and sleeping pills in the past.

I was also abusing THC oil big time in ~2020. (It led me to quit CT very late 2020)

 

I got out of the benzo and sleeping pills game very quickly. I was scared to death of these.

Over the years, I destabilized multiple times because of alcool and THC. I did not, at the time, made the link between my symptoms and the bad combo that are alcool, thc and AD.

 

My point is, you are not alone in this situation. It is still possible to find stability and to heal.

I found some stability, and I believe that I'm slowly healing. I am not a weird exception, if I can find stability, I think that you can too.

 

Our path might be very different but we also share part of the journey.

You can and you will heal. ❤️ 

 

22 minutes ago, ScaredDad said:

like every time I take it 3 hours later symptoms increase 2x to 3x.

I guess 2.3mg is still too much.

 

I'm not going against what seem to be a consensus over holding your current dose until your baby is born.

I don't have much experience with this. This is because of the risk of destabilizing more?

[ScaredDad]

23 minutes ago, Tweed9674 said:

I'm not going against what seem to be a consensus over holding your current dose until your baby is born.

I don't have much experience with this. This is because of the risk of destabilizing more?

Thank you for your very thoughtful message. I think that is right about the baby. I’m torn between two schools of thought, one is to slowly reduce to to something in like 2.10 with a 30 day daily micro taper and the other is to drop straight there and hold. I’m torn on the two.

[ScaredDad]

@Emonda

@LotusRising

@LostInCanada

last question is there any reason to not do the slower drops like above down to 2.10? So like 0.2 a day? Or 0.2 every other day? Does that spacing helping at all?

[LostInCanada]

@ScaredDad because you are trying to find your sweet spot in regard to dosage, doing daily drops may blur the lines a bit. I think doing a smaller weekly drop is very manageable in regard to symptoms and is more clear-cut as to whether the dose is good or not. Ideally finding the right dose and stabilizing is still the best way. You just aren't at the right dose. 

If it becomes obvious that there is no sweet spot and it is just an ADR then microdosing with regular holds is a good option.