KimMk: hope springs eternal but where do I start this time?

[KimMk]

Hello, long-time follower here. I have a novel here but I would very much appreciate hearing someone elses thoughts.

 

I am 29 years old and I have been on some form of psychiatric medication since I was 13 years old. I want to cry just saying that because I was never a troubled child. I was sensitive and full of life and love and hope.

 

When I was 13, my family and I moved across the country (I'm in the US.) I had a dysfunctional home life and the move was overwhelming for me. We moved in July and I was deemed "depressed" my December because I was grieving the move.

 

I was on several different antidepressants for two years until I was put on effexor in 2008 at age 15. I've never been able to come off. Why is this stuff even legal????

 

When I was 19, in 2014, my psychiatrist helped me do a five week taper off effexor. I experienced increase in energy, creativity, and heightened sexual interest. Then one morning I woke up sad and then within a week I was in the belly of depression. I became suicidal and planned of getting a bottle of vodka and hiding in my closet drinking until someone found me. I told somoeone about this though and I was hospitalized and put back on effexor. My psychiatrist interpreted these withdrawal symptoms as the development of bipolar disorder and put me back on effexor as well as 150mg of lamictal.

 

Meanwhile, the effexor was causing me to have up to 13 migraines a month and sexual dysfunction. So in 2018, my doctor did another five week taper off effexor. So I was off the effexor and still on 150mg of Lamictal. I began to experience high levels of anxiety and insomnia. Eventually the anxiety to turned into panic level. The panic fed the insomnia and the insomnia fed the panic. My doctor then put me on Latuda and I experienced a descent into hell. And I do not put that lightly. I was in anguish, feeling like I was spiritually and mentally being put naked on a burning stove....the pain and grief sent me into a state of dissociation and I experienced psychomotor as well as visual disturbances. I was internally crawling out of my skin and externally unable to move. Every single day I was vomiting and having diarrhea. One night, my heart was racing in the 120's and I felt that familiar wave of anxiety induced nausea so I jumped out of bed, ran to the bathroom and vomited so violently that I urinated myself. It was my first breaking point and so I started the effexor again. 

 

So there was a week there where I was taking effexor, lamictal, and latuda. I felt like a terrified zombie so my doctor decided to increase the latuda. I experienced severe akathisia and almost became psychotic. So I stopped the latuda and was given a 1mg of ativan for sleep. The ativan completely broke the panic cycle that I had been in for six weeks. 

The depression that followed is a blur and two months went by where I essentially just stared at the wall and sat outside.

 

It took two and a half years to feel fully recovered.

 

Now I am approaching 30 and desperately want to be drug free. I am willing to taper slowly over several years but I want to start the process once my partner gets back from deployment in June.

 

So here are my questions: how do I find a doctor that is experienced using the 10% taper method? How to I taper off an extended release capsule with beads? Is it sustainable to count a bunch beads every morning? Should I use a compound pharmacy? Is it stupid to taper off lamictal and effexor at the same time?

[manymoretodays]

Hi KimMk, and welcome aboard.  Thank you for your patience in getting started, and for doing your signature.  That's great!  Also, so great that you are planning ahead for your taper.

And unfortunately your story is all too familiar around here.  Inappropriate use of these drugs, poorly done deprescribing and WD unrecognized, and then more with diagnonsense, and drugging.  Around and around we go.  I think we can help for sure.

And so sorry to read what you have been through to date.

 

Dr.'s who might help and may be familiar with the 10% taper.  Here's our topic:

Recommended doctors, therapists, and clinics(just click on the underlined passages to go to the topic, and then do scroll on up to the first post in topic if needed, to start )

and then I think it's always good, if you are able to gather information, educate yourself, and get empowered.  We deserve to be equal contributing partners in our care, and are sometimes our own experts so to speak, when it comes to knowing our bodies and selves.

 

When tapering mulitple drugs, we generally have you start with the most activating or accelerating drug:
Taking multiple psych drugs? Which drug to taper first?

 

Taper more than one drug at a time?

 

Preparing to taper

 

So presently, it is Lamictal and Effexor that you take?

When do you take them each day?

How are you doing at present?  How are the migraines?

 

Okay, so I hope I got to most of your questions so far.  I will include some basics below, as I am not certain what you have read here yet.

 

We recommend that a person taper by no more than 10% of their current dose, with at least a four week hold in-between decreases.  The 10% taper recommendation is a harm reduction approach to going off psychiatric drugs.

Why taper by 10% of my dosage?

 

Tips for tapering off Effexor and Effexor XR(venlafaxine)

you'll see more ^ about the different methods possible used to taper Effexor

 

Tips for tapering off Lamictal(lamotrigine)

 

More about what happens when we come off our drug(s):

How psychiatric drugs remodel your brain

What is withdrawal syndrome.

Dr.Glenmullen’s withdrawal symptom list.

 

The Windows and Waves Pattern of Stabilization

 

When we take medications, the CNS (central nervous system) responds by making changes over the months and years we take the drug(s). When the medication is discontinued, the CNS has to undo all the changes it made.  The CNS likes stability. Rebuilding the neurotransmitter production and reactivating the receptor and transporter cells takes time -- during that rebuilding process symptoms occur. And sleep is really important during withdrawal. 

 

We don't recommend a lot of supplements on SA, as many members report being sensitive to them due to our over-reactive nervous systems, but two supplements that we do recommend are magnesium and omega 3 (fish oil). Many people find these to be calming to the nervous system.  

Magnesium, nature's calcium channel blocker 

Omega-3 fatty acids (fish oil) 

 

You might want to get started on some Omega-3's pre tapering.

 

This is your introduction/journal page where you have now introduced yourself to the community, you can ask questions here regarding your tapering, give updates, communicate with us here, and keep a record of your journey.

 

Welcome again.

 

Love, peace, healing, and growth,

manymoretodays(mmt)

 

[Fifree]

Hi there KimMk. I saw that you dropped by my thread so thought I’d come over and say hi.  I’m so sorry to read what you’ve been through with these terrible drugs. You are definitely not alone here with being started on drugs as a teen, polydrugged or misdiagnosed. (Diagnonsense as mmt puts it). 
 

i just wanted to send some support your way. It’s a long road, but you can get off this stuff and be all the better for it. 
 

All the best. Please post often!

[KimMk]

I'm still trying to navigate this website and I hope I'm doing this correctly.

 

I met with Mark Horowitz last year and he gave me the suggested tapering chart for effexor. I was following the hyperbolic taper based off SERT occupancy, not off the actual dosage of the drug itself. So I made a drop that I thought I would be able to tolerate. That was in September. In mid January, I was starting to feel off late in the afternoon and thought I might have missed a dose of effexor. So I took half a dose and then smoked some weed in anticipation of an onslaught of nausea and brain zaps. I've tolerated weed in the past, especially for nausea, but it sent me into raging wave.

 

I did a 1.2 mg updose Jan 26 and then another 1.2mg updose Feb 9. That restabilized my nervous system and stopped the electrical storm in my body.

 

Now I'm dealing with a heavy depression. I don't want to live and I don't want to die. I dont even "want" to feel better because my capacity for wanting doesnt even seem to exist. I'm just simply here. I feel as if effexor has created the very chemical imbalance it claimed to fix.

 

I'm now questioning my desire to have children. I'm 30 years old and I have years of tapering ahead of me. How can I possibly go through a pregnancy and raising a child while dealing with this? I'm angry at my extremely supportive partner all the time and I can't show him the grace and understanding with his issues with anxiety as he shows me. I feel like I must be such an absolute drag to be around.

 

I miss my creativity, I miss rockclimbing, and weight lifting, and traveling, and wanting to have sex. I miss WANTING anything. I swear I'm fine watching paint dry in slow motion right now.

 

How could people understand this? I can barely understand this...how is this possibly my life? I've worked so hard to recover from trauma which I made great strides with. I've always done my best to be the very version of myself I could possibly be. I DEEPLY care about others have and dedicated my life to being a nurse. I used to have such a strong spiritual life and that has just been eviscerated.  I feel like I'm living without everything that makes me human.

 

The one positive though is that I've been through withdrawal before so I'm not dealing with fears of this lasting forever. So it makes it easier to know that this is just kind of a waiting game sometimes.

[KimMk]

Tonight is one of the harder nights I’ve had since this wave started over a month ago. I feel so much fear over symptoms. I just can’t believe this is my life. I’m not going to be able to keep my job. I pray to god I pull through this. I know I will, somehow someway. 

[ThatOneGirlStitch]

I know that fear. Sometimes we have no idea how we got through, we just did. Not to be cheesy but keep moving forward and only look back to see how far you’ve come. What is now won't be forever.  I hope future nights are better. ❤️‍🩹

[withhopeinmyheart]

I know this fear, too. It's so bad currently. I'm clinging to everything I can. 

[KimMk]

It's important for me to not compare my healing timeline to other people's timelines. We all have unique bodies and minds.

Today I'm working on my mindset.

 

I was terrified of one symptom in particular and it happened this week but I know what triggered it and it's already dying down.

Next month is my six month mark since making my last dose reduction (which was way too big and why I'm in this wave), and I've been psyching myself out because some people are like "6-9 months are the WORST" but I don't want to hinder my own recovery.

I'm just going to commit to embracing the windows because I get a lot them and not EXPECT myself to crash again next month.

[KimMk]

March 5, 2024

I know one day I will be on the other side of this. I have no doubt about that. I already feel my brain shifting around, trying to find homeostasis.

I hesitate to write about symptoms so I won’t do that yet. I will say though, there have been moments where I’ve felt completely and irreversibly defeated. There is no fully grasping what it’s like unless you’ve lived it but I can say that I can hardly imagine a more terrifying experience. At the beginning of this wave, I felt hope and connection with wanting to live a full life again. I cannot say I feel connected to that anymore. I have a vague sense that this is not permanent but that’s about it. I can’t say I want to be alive or that I want to be dead. There’s a complete absence of want at all. This makes existing brutal at times.

One thing I do feel connected with though is that time is the healer. How convenient that time, right now, seems to be melting away, like one long moment. I blinked in January and now it’s March. It’s five months since the dose reduction and two months since the crash. I am feeling good that that much time has passed.

I have moments where I feel like I should stay on these pills for life because how can I possibly go through years of tapering? But then I think about what a vulnerable position I’m in having to take a pill every single or else experience torture. This is what makes me feel trapped the most. I can’t even talk more about that because it is so triggering.

 

Will I be better in two months to return to work? Will being in the hospital cause a wave? How am I going to live? I don’t know if journaling helps or hurts.

I know it will get better though. That, I have no doubt about.

[KimMk]

March 8, 2024

Windows and waves, windows and waves. I feel glimpses of “Kim” occurring more than usual this week. I had several nights of good sleep. I have time throughout the day where I feel pretty normal.  I’ve experienced sleep problems the last two nights though and the SI very quickly returns. Sometimes I use reverse psychology and tell myself its ok if I end it and that immediately makes me not want to do it. How can I go from feeling semi-ok, symptoms at like 2/10 to pacing pacing pacing, thinking death is the only way out and symptoms 8/10? Last week there was a moment I was doubled over and screaming that I wasn’t going to survive this. Two mornings ago, I woke up rested and enjoyed the morning watching animal videos, listening to music, and cleaning the kitchen.

Time seems to be an enigmatic bizarre thing. One moment, its was January 16 and I blinked and now its March 8.

I miss coffee, rock climbing, laughing, sex, dinner with friends, TRAVELING, sleeping, even working. I want to eat fettucine alfredo and cheese cake with a cappuccino. I miss having a five-year plan. I miss having ambition, a relaxed body, no fear to turn the lights off, no fixations on sleep. I miss not having fear of fear. I miss going into public, going to the gym, singing to loud music in the car. I feel body start to get tired and I dread whether or not I will be able to sleep tonight. I’ve started praying again.

I had several days where I had some windows and I didn't have to do aything to get there. It just happened. It will happen again. My sleep restored itself and it will restore itself again.

[KimMk]

On 2/27/2024 at 4:42 AM, withhopeinmyheart said:

I know this fear, too. It's so bad currently. I'm clinging to everything I can. 

I think we follow each other on IG

 

[KimMk]

On 2/26/2024 at 6:36 AM, ThatOneGirlStitch said:

I know that fear. Sometimes we have no idea how we got through, we just did. Not to be cheesy but keep moving forward and only look back to see how far you’ve come. What is now won't be forever.  I hope future nights are better. ❤️‍🩹

That's not cheesy at all. Thank you ❤️ 

[KimMk]

 

Hard not be extremely discouraged. I feel like I’ve plateaued at sh*tty. I’m not in extreme states which is good but it feels pretty hard to hold on to any hope. I don’t know the healing time-line. I feel stuck stuck stuck. I’m scared of everything. I don’t know what’s gonna happen with my apartment and job. I don’t know what’s going to happen with anything. Sometimes I think about the moment I will die just to bring myself comfort. Just to know that it’s for sure not permanent because I’m going to die someday. I recognize that other people have recovered and that is good fodder for my mind. I just can’t seem to feel much. I slept a little better last night which was good. It didn’t take as long and it seems like my brain went into deep sleep for a while.

[KenA]

Hang in there @KimMk. It does get better

 

[KimMk]

Thank you 🙏

[ThatOneGirlStitch]

2 hours ago, KimMk said:

 

Hard not be extremely discouraged. I feel like I’ve plateaued at sh*tty. I’m not in extreme states which is good but it feels pretty hard to hold on to any hope. I don’t know the healing time-line. I feel stuck stuck stuck. I’m scared of everything. I don’t know what’s gonna happen with my apartment and job. I don’t know what’s going to happen with anything. Sometimes I think about the moment I will die just to bring myself comfort. Just to know that it’s for sure not permanent because I’m going to die someday. I recognize that other people have recovered and that is good fodder for my mind. I just can’t seem to feel much. I slept a little better last night which was good. It didn’t take as long and it seems like my brain went into deep sleep for a while.

This is very relatable for me. I plateaued for a long time. Felt like I was in stasis. I kept thinking of the day I would die as a comfort. Weirdly that thought kept me going. I would constantly think "Is this as good as it gets?" Then was surprised when it did get better. Or was I relieved? I couldn’t plan for anything. The worry of finances and being a burden was a hug stress. I don’t know how I got through. I think I just kept existing. I just wanted to say that plateaued doesn’t mean you will stay there.

[KimMk]

@ThatOneGirlStitch Thank you. Reassurance that it is not permanent is what I need most. The disruption of sleep really really wears me down quickly. But I’m existing moment to moment.

[Comfyquilt]

Hi @KimMk I think I follow you on IG! You put into words SO eloquently how WD feels (for me anyways). I really like how you said “it’s gotten better before so it will again” - I’m on different meds but it’s gotten better before for me too so I hang onto that. I’m wishing you all the best in your journey, and damn I want Alfredo, cheesecake and coffee! That’s sounds amazing. I want to do all the things you list as well. I’m here if you ever need an ear (I’m littlenookflowers) on IG ❤️

[littlebird]

2 hours ago, Comfyquilt said:

Hi @KimMk I think I follow you on IG! You put into words SO eloquently how WD feels (for me anyways). I really like how you said “it’s gotten better before so it will again” - I’m on different meds but it’s gotten better before for me too so I hang onto that. I’m wishing you all the best in your journey, and damn I want Alfredo, cheesecake and coffee! That’s sounds amazing. I want to do all the things you list as well. I’m here if you ever need an ear (I’m littlenookflowers) on IG ❤️

Y'all are making me want to get into ig!

[KimMk]

2 hours ago, littlebird said:

Y'all are making me want to get into ig!

You should ! 😅

Theres lots of people on there to meet 

[littlebird]

Just now, KimMk said:

2 hours ago, littlebird said:

Y'all are making me want to get into ig!

You should ! 😅

Theres lots of people on there to meet 

That's true! I see a lot of links to helpful mental health stuff on there too, seems educational and also nice. Ok, I'm officially thinking about it.

[KimMk]

This might be one of the hardest days so far. I’m so so tired. I’m so scared. I need hope. I keep thinking about how long this is going to take but I’m trying not to. I need prayers or witchcraft or anything. I want to live.

[KimMk]

Last night was the second to scariest night of my life. Pacing all night after weeks of terrible sleep and was awake at 4 am still. I broke down and took 1mg of Ativan. I tried to avoid it all costs but it was either that or pulling the plug. I don’t know what the future holds but right now I’m sitting in the sun and feeling like myself more than I have in weeks. It’s restoring my will and desire to live. I understand the dangers of paradoxical reactions and dependence but I want to try everything before I decided to make a decision I couldn’t take back.

I know it’s not a long term solution but I had to make hard decisions at the brink of you-know-what.

I feel better today and now that they terror and akathisia has been broken for the moment, I’m hoping it will refill my gas tank for a day or two. 
Now that I feel like myself, I’m remembering why I want to live.

[KimMk]

I seem to be only getting worse. I could handle a lot more if it wasn’t for the insomnia ☹️

[KimMk]

I prayed to god and made threats if I wasn’t able to sleep last night and I got a segment of deep sleep followed by a segment of crappy sleep. I’ll take it as a nudge in the right direction. 

[KimMk]

Gonna try a 10% Updose today 

[Nicjk]

15 hours ago, KimMk said:

Gonna try a 10% Updose today 

@KimMk how did your updose go? I am also thinking of updosing

[KimMk]

@Nicjk tolerating it so far!

[KimMk]

Updosing seems to have helped A LOT. Crazy how 8mg can make such a huge difference. Idk if I’ll ever be free from effexor but I think I’ll be happy with at least a lower dose.

[Catina7]

Hi @KimMk, I've read through your thread and just wanted to say hello.  I'm also trying to free myself of Effexor.  I'm glad that the updosing helped...that's great news!  You WILL be free of the Effexor one day.  Just take things very slow and listen to your body.  You're still very young and have so many years ahead of you.  It's a marathon and not a race to the finish line, but I know one day you'll get there.  Give yourself lots of time and patience so that you can stabilize and heal.  

 

Sending you a huge hug.  I'm so proud of you for hanging in there under such distressing circumstances.  I PROMISE that things will get better!  😊

 

Catina ❤️

[Kaylaq]

@KimMk @Catina7, Hi, I just found your thread, I’m struggling in that stuck/limbo place.   Trying to connect with others on this weird journey.

how are you both doing? 

[KimMk]

4 hours ago, Catina7 said:

Hi @KimMk, I've read through your thread and just wanted to say hello.  I'm also trying to free myself of Effexor.  I'm glad that the updosing helped...that's great news!  You WILL be free of the Effexor one day.  Just take things very slow and listen to your body.  You're still very young and have so many years ahead of you.  It's a marathon and not a race to the finish line, but I know one day you'll get there.  Give yourself lots of time and patience so that you can stabilize and heal.  

 

Sending you a huge hug.  I'm so proud of you for hanging in there under such distressing circumstances.  I PROMISE that things will get better!  😊

 

Catina ❤️

Thank you for the encouragement. All of my tapers have been done wrong (three times now) and I am so traumatized that the idea of even doing a tiny hyperbolic taper scares me! The SI were so intense that I became a danger to myself and at a certain point, I have to evaluate what’s worth it and what isn’t.

Does doing a hyperbolic taper actually minimize symptoms?? What happens after I hit zero?? I just don’t know.

 I’m just glad that the Updose helped. I’m kind of thinking, maybe let’s just try to get to 75mg and re evaluate if I want to continue my taper journey. At least if I just get to a lower dose, I won’t feel like all this suffering was for nothing. 
 

I need to get back to work though so I might Updose again in two weeks. Idk, we’ll see how I feel.

 

[KimMk]

2 hours ago, Kaylaq said:

@KimMk @Catina7, Hi, I just found your thread, I’m struggling in that stuck/limbo place.   Trying to connect with others on this weird journey.

how are you both doing? 

 Hi there 😊

I’m leveling out after that updose. The most distressing symptoms were alleviated but still feel depression but who wouldn’t feel depressed after all that? Just grateful I slept!

[Kaylaq]

Glad to hear you are getting sleep again! 🥰👍🏼👍🏼

[KimMk]

Do people actually ever find stability in between cuts?

I go to Angie peacock’s support group time to time and she said that some people don’t ☹️ I’d rather die taking this drug than go through five years of destabilization 

[Kaylaq]

I also, hope it doesn’t take that long either!!! I’m not functioning much either!  How is your updose working??  🙏🏻🙏🏻