Lojo585: tapered too fast (abilify/lamictal/effexor), with ADHD and perimenopause in the mix

[Lojo585]

Hi everyone... I'm a 50yo female, diagnosed with depression and BFRB as a teen and was put on Prozac. I have never been off psych meds in the 3.5 decades since that time.

 

Throughout the rest of my teens, 20s, and early 30s, I saw a series of psychiatrists who had me try various SSRIs for major depressive disorder. You name it, I probably took it at one point or another. The drugs never did much for very long, if at all. I was in therapy for most of this time, as well. Although I was able to get a master's degree, pursue a career, have hobbies, get married, own a house, and become a mom, I still constantly struggled in major ways and never could figure out why I was so miserable and burned out all the time. Every few years I would have what I called a "crash" when I would nearly fall apart––my psychiatrist would change the dose, or switch me to a different med, then I would go back to functioning (such as it was). In 2009, I started with a new psychiatrist who does a lot of contract research for the pharma companies (I guess I thought that was a good thing?) in addition to seeing private patients. She wanted to try "augmenting" the antidepressant with other drugs. Ultimately, we landed on a cocktail of Pristiq, Abilify, and Lamictal. In 2020, I switched to a different psychiatrist, who switched me from Pristiq to Effexor XR. 

 

So essentially, I was on these meds for over 15 years:

- SNRI: Effexor XR (225mg was highest does in 2021) and before that Pristiq, which is Effexor's evil cousin

- Antipsychotic: Abilify (various doses over the years as we tweaked, but 5 mg for the last few years)

- Mood stabilizer: Lamictal (200mg)

 

Here's where it gets weird... in 2018, my psychiatrist must have gotten sick of hearing me complain about how tired I always was, so she prescribed a stimulant (methylphenidate). "OMG! You mean my brain doesn't have to be this noisy all the time, and I can get stuff done??" I started reading up on ADHD and how many women who sounded a lot like me were starting to be diagnosed in mid-life, but when I asked her if she thought maybe I had ADHD, she said there was no way I had it––I did too well in school (UGH!?). She did let me try different stimulants, though, and I wasn't convinced she was right. My next psychiatrist didn't seem believe I had ADHD either, and I was afraid he was going to stop prescribing my stimulants... Eventually I found a psych NP who is up-to-date on ADHD in women and how to treat it (with and without medication). So I now am pretty sure that I never had depression to begin with––it was ADHD overwhelm and emotional dysregulation. (Ask me sometime about the rage and grief I feel about being on all these drugs for my entire adult life...)

 

So then, the psych NP and I are like, we gotta get me off these meds... Here is what I did under her guidance (to the best of my recollection at the moment):

- March(?) 2023: stopped Abilify 5mg, no taper

- November 2023: reduced Effexor from 225mg to 150mg, no taper

- January(?) to May 2024: discontinued Lamictal 200mg by reducing dose by 50% every ~3 weeks

- June to July 2024: reduced Effexor one pill at a time every ~10 days, from 150mg > 112.5mg > 75 mg > 37.5mg... I have been holding at 37.5mg for the last 6 weeks

 

...yeah, I know.

 

Meanwhile, my physical health wasn't great at the start of this effort––I had gained ~80 lbs in 4 years (you know how it is). But my health took a total nosedive over this time (fatigue, GI issues, nausea, insomnia, constantly hot/sweaty, insanely dry mouth, short of breath, tingling hands and feet, concerning labs, joint pain, restlessness/possibly akathisia). I also started having terrible mood swings, and if I'm not irritable as all heck, I'm super anxious, or I'm sort of...hypomanic(?). All this has had a profoundly negative impact on my relationships, and I have been out of work on disability since November 2023 (8 months and counting). My life as I knew it has literally crumbled to pieces.

 

My various doctors and my psych NP didn't make the connection between all that and my going off 3 different psych meds as quickly as I did, but the more I poke around online, the more I am seeing it. I kind of don't trust anything my healthcare team is telling me anymore.

 

So that brings me to...

 

MY QUESTIONS FOR THE UNIVERSE AT THE PRESENT MOMENT:

- Obviously, I went off these meds too quickly. But how do I know what is a withdrawal symptom, vs. what might be hormone-related (perimenopause), vs. what might be ADHD (poorly managed at the moment for whatever reason)?

- Should I go off of my stimulant (Vyvanse 60mg) before I finish tapering off the rest of the Effexor (MUCH more slowly this time)? How do I do that?

- Should I start HRT to see if it makes a difference with some of my symptoms? My OB-GYN prescribed me a low-dose birth control pill (Junel FE) like a year ago, but I never started it... When should I start that in relation to continuing my Effexor taper?

- Where on earth are the healthcare providers that can HELP me––instead of just telling me to lose weight, get more sleep, or go back on an SSRI? Should I look for a functional medicine doctor (not that I can afford it)?

 

I literally don't know what to do now––waiting for my psych NP to weigh in, but the last thing she said was, "we need to get the Effexor out of your system" and that concerned me...

 

 

Good grief, this ended up much longer than maybe it needed to be, and there's a lot more I could share, but I'll stop here. Thanks in advance!!

 

[FireflyFyte]

Hi Lojo585,

 

Welcome to SA. Thank you for summarizing your drug history in your signature.

 

On 8/8/2024 at 10:31 PM, Lojo585 said:

Obviously, I went off these meds too quickly. But how do I know what is a withdrawal symptom, vs. what might be hormone-related (perimenopause), vs. what might be ADHD (poorly managed at the moment for whatever reason)?

 

You may find the following resources helpful when trying to discern what is and what isn't related to withdrawal -

• What is withdrawal syndrome?
• How do I know it's withdrawal and not relapse?

On 8/8/2024 at 10:31 PM, Lojo585 said:

Should I go off of my stimulant (Vyvanse 60mg) before I finish tapering off the rest of the Effexor (MUCH more slowly this time)? How do I do that?

 

We recommend tapering off of Vyvanse in the same way we recommend tapering off other psychiatric medication. We have information at Tips for tapering off Vyvanse (lisdexamfetamine dimesylate)

 

On 8/8/2024 at 10:31 PM, Lojo585 said:

Should I start HRT to see if it makes a difference with some of my symptoms? My OB-GYN prescribed me a low-dose birth control pill (Junel FE) like a year ago, but I never started it... When should I start that in relation to continuing my Effexor taper?

 

This is not something that we are qualified to advise upon. I would encourage you to talk to your OB-GYN if you have questions.

 

On 8/8/2024 at 10:31 PM, Lojo585 said:

Where on earth are the healthcare providers that can HELP me––instead of just telling me to lose weight, get more sleep, or go back on an SSRI? Should I look for a functional medicine doctor (not that I can afford it)?

 

We have a list at Recommended doctors, therapists, and clinics

 

Thanks,

 

Firefly

[Lojo585]

Thank you so much!! The links are super helpful. (There's a lot of info on this site, and my poor broken brain has been pretty overwhelmed lately.) I'm sure I will have more questions. I'm talking with my psych NP tomorrow and will post an update soon.

 

If any other late-diagnosed ADHDers or women/AFAB who are on HRT find my post, please say hi––I would love to compare notes.

[Lojo585]

OK, so I have read through as much as I could of the recommended info––thank you again! However, I'm still kind of at a loss of where to go from here. I don't think it will be feasible for me to connect with any of the providers on the list here... I'm kind of on my own   I feel pretty awful physically and mentally for most of every day now, and I want to change SOMETHING, and SOON, so I can get this over with!!

 

Here are the options I think I'm deciding between right now (and I do realize I shouldn't change more than one thing at a time)...

 

1. Restart Effexor taper - this time by opening the capsules and counting the beads for a 10% reduction.

  ...OR...

2. Taper the Vyvanse first - actually maybe I'm kind of already doing that, since I couldn't find any pharmacies with the 60mg capsules in stock this week and I was out of pills, so I ended up with a 30-day supply of 50mg capsules. Didn't have the spoons to do much else.  

 

(Side note: in my intro post I mentioned I was considering starting a low-dose birth control pill for perimenopausal symptoms. I do think it's possible that HRT could be a game changer for managing my ADHD, mood swings, joint pain, etc.... but again there's the whole thing about not changing more than one thing at a time. I'm seeing a new gyno at the end of the month who specializes in menopause, yay. Not that I am too optimistic she will know what to tell me here. "Ask your psychiatrist" is pretty much all I have been hearing since I started asking questions about this!)

 

Anyway... I read the part of the site about deciding which med to taper first ("accelerators" vs. "brakes"), but I'm still not clear on what to do...

 

So would people say the Vyvanse has probably been making the Effexor withdrawal worse? I haven't been on it nearly as long (off and on maybe 5-6 years?, and most recently I switched back to it from Adderall a month ago––really not smart timing, I know now. In the long run, I'd rather not take any stimulants and try to manage my ADHD some other way (not sure if that is even possible...ugh).

 

But then a hyperbolic taper of Vyvanse starting at 50mg, 10% per month, is going to take what, like 2.5 years?? Plus there's no guarantee I'll reliably be able to get my hands on the brand due to the global shortage... 

 

And meanwhile, during those 2.5 years, would it even be safe to stay on Effexor 37.5mg? I feel like this drug has wrecked my physical health already. Would I maybe stabilize though, if I just take 37.5mg of Effexor until I'm done with the Vyvanse taper?
 

Meanwhile, I met with my psych NP earlier this week––she thinks I will feel better sooner if I stay on the Vyvanse and just stop taking the Effexor. Which I really don't think is a good idea, right?? (She did acknowledge my desire to do a very slow taper and said it's my decision...)

 

Sorry if I'm sounding a little squirrelly here. Writing is super hard for me now, and I'm doing the best I can  

 

[Mushaboom]

Hi @Lojo585

I found your thread while searching “adderall” because I have ADHD and have never been medicated, and in the throws of withdrawal I am also trying to decide what to do next.

 

i don’t have a lot of advice, just wanted to stop by and say hello, and thank you for sharing your experience.
 

i am also tapering Effexor (I reinstated a small dose in april) and have a lot of questions about how neurodivergence impacts the withdrawal process. Reinstating Effexor hasn’t helped in the long run, and I find myself constantly overwhelmed and unable to take a lot of action, which seems to add to the depression, panic and other major withdrawal symptoms. I am honestly at a point in this journey where I am considering being medicated for ADHD. I am very interested in hearing your experience.

 

i took effexor for almost 10 years and began my taper last June. Earlier the same year I got off of birth control (estrogen pill). Now my period symptoms are really bad, and impact my withdrawal symptoms every month.

For whatever my experience is worth, I would focus on the Effexor first, rather than both at once. 
 

hope you get some clarity and direction

 

 

[FireflyFyte]

14 hours ago, Lojo585 said:

I feel pretty awful physically and mentally for most of every day now, and I want to change SOMETHING, and SOON, so I can get this over with!!

 

We recommend starting a taper when you feel stable. Reducing when you are experiencing acute symptoms often sets people up for failure.

 

14 hours ago, Lojo585 said:

But then a hyperbolic taper of Vyvanse starting at 50mg, 10% per month, is going to take what, like 2.5 years?? Plus there's no guarantee I'll reliably be able to get my hands on the brand due to the global shortage... 

 

How long have you been on the Vyvanse?

 

14 hours ago, Lojo585 said:

And meanwhile, during those 2.5 years, would it even be safe to stay on Effexor 37.5mg? I feel like this drug has wrecked my physical health already. Would I maybe stabilize though, if I just take 37.5mg of Effexor until I'm done with the Vyvanse taper?

 

What physical symptoms are you associating with the Effexor? 

 

14 hours ago, Lojo585 said:

Meanwhile, I met with my psych NP earlier this week––she thinks I will feel better sooner if I stay on the Vyvanse and just stop taking the Effexor. Which I really don't think is a good idea, right??

 

We strongly advise against going cold turkey off of psychiatric medication.

[Lojo585]

Hi @Mushaboom! Thanks so much for writing. It's like, wow––here are all these conditions doctors really have no clue how to treat (ADHD, antidepressant withdrawal, perimenopause), and somehow we ended up with them all? It's like hitting the jackpot no one wants  

 

So before I realized how badly getting off my psych meds was going for me, I was on FIRE about ADHD in women and girls... The frequency with which our ADHD symptoms have been missed/ignored/misdiagnosed, the lack of research or conversations until recently about the impact of menstrual cycles and hormonal changes leading up to menopause. Maybe in 10-20 years we'll know more... (ugh). 

 

So far I have found that the tapering peer support community is pretty anti-stimulants, and the more research I do on the topic, I totally I get why. It's a huge catch-22 for people with ADHD (who presumably take them as prescribed), unfortunately.

 

However, I found podcast from Mel Robbins to be pretty interesting: https://youtu.be/XM5qZXqTQ3s?si=EmjQFUKBcLJHei-P

I don't love the entire message, but her guest, Dr. Chris Palmer (research scientist at Harvard) theorizes that it's a function of "brain metabolism," and that diet and exercise can have a profound effect on ADHD symptoms. I am ready to believe this, but I have of course struggled with these my whole life (mostly the exercise piece). It's like, the very symptoms exercise is supposed to be helping are PREVENTING me from being able to find the motivation to exercise. I'm sure you get it!

 

For hormones, I bought a copy of The New Menopause by Dr. Mary Claire Haver. Now if I could get my brain to read.  

[Lojo585]

42 minutes ago, FireflyFyte said:

How long have you been on the Vyvanse?

 

So I have been trialing different stimulants for 6+ years... I'm having trouble remembering. I think I restarted Vyvanse in 2022? Then switched to Adderall for a few months earlier this year, then back to Vyvanse in June.

 

42 minutes ago, FireflyFyte said:

What physical symptoms are you associating with the Effexor? 

 

Well, below are the physical symptoms bothering me the most... Some of these go back to before I started tapering anything, but my doctors haven't been able to find anything wrong with me except being overweight. All have gotten worse in the last 2 months since I started reducing my Effexor one pill at a time (see my history in my signature):

• Nausea
• Sweating/overheating (not hot flashes - those feel different and don't last as long!)
• GI/diarrhea
• Akathisia (mild, I think? but unpleasant)
• Heart racing/palpitations
• Insomnia
• Fatigue
• Joint/musculoskeletal pain
• Migraines/headaches
• Tingling/paresthesia in hands and feet
• Increased clumsiness
• Worsening seasonal allergies/sinus issues

 

Oh wait. That time frame corresponds to when I started back on the Vyvanse, doesn't it. Hmmm...

 

[Lojo585]

OK, well I think my gut is telling me the best thing to do right now is get off the Vyvanse first and HOPE that helps me feel better... at least to the point where I can feel stable enough to finish getting off the Effexor with a more gradual taper.

 

I am planning to talk about this tomorrow with my psych NP, but I'm not sure what my plan is. I read the info here on tapering off of Vyvanse (and unfortunately, some of the advice isn't feasible due to laws in my state governing controlled substances, the way my insurance covers Vyvanse, and the unpredictability of the dose I need being available at a pharmacy covered by my insurance in the exact time frame I need it). I'm a little freaked out by the prospect of opening the pills, making a liquid, etc. with this brain fog and how clumsy my hands are these days.

 

But here's my question for @FireflyFyte or anyone else who has had a similar dilemma... if I think that at least SOME of the discomfort/awfulness I am experiencing right now (see my previous post above) may be side effects from the Vyvanse, would it make sense to try and get off it more quickly at this point? I'm not sure how to balance the risk of withdrawal from Vyvanse with the possibility that it's the Vyvanse side effects that are doing me in here.

 

Meanwhile, I have connected with a therapist who also does withdrawal support coaching (Chris Paige LCSW)––I met with him last week to go over my history, and I guess I'll see what his recommendations are tomorrow. I probably can't afford to meet with him too regularly, unfortunately, but I'm happy to have someone in my corner I can have a live conversation with from time to time.

 

Then I have a lifestyle medicine consultation on Wednesday, and it is actually covered by my insurance! I booked this appointment a while ago in the hope of finding support/treatment for metabolic syndrome (for which I am certain the psych meds are largely responsible, ugh). I figure it can't hurt...

[FireflyFyte]

On 8/19/2024 at 10:16 PM, Lojo585 said:

if I think that at least SOME of the discomfort/awfulness I am experiencing right now (see my previous post above) may be side effects from the Vyvanse, would it make sense to try and get off it more quickly at this point? I'm not sure how to balance the risk of withdrawal from Vyvanse with the possibility that it's the Vyvanse side effects that are doing me in here.

 

What side effects do you believe you are experiencing with Vyvanse?

 

It might be helpful to keep a few days' worth of logs of your symptoms and the timing so we can try and determine if they are Vyvanse side effects and/or withdrawal symptoms from Effexor.

[Lojo585]

11 hours ago, FireflyFyte said:

 

What side effects do you believe you are experiencing with Vyvanse?

 

So the list of what might actually be Vyvanse side effects (according to the package insert and various web resources) overlaps quite a bit with my list above of symptoms I've been attributing Effexor, either being on it or withdrawing from it:

• Nausea
• Sweating/overheating (again, hot flashes feel very different from this...)
• GI problems: acid reflux, diarrhea
• Heart racing/palpitations
• Insomnia
• Joint/musculoskeletal pain
• Migraines/headaches
• Tingling/paresthesia in hands and feet
• Jitteriness (it feels like my insides are sort of vibrating? can't describe it)

Plus, I haven't even mentioned the mood swings: irritability, anxiety, excitability, morbid ideation (not suicidal, but just hating life), emotional numbness, and something that seems kind of like mania.

 

11 hours ago, FireflyFyte said:

It might be helpful to keep a few days' worth of logs of your symptoms and the timing so we can try and determine if they are Vyvanse side effects and/or withdrawal symptoms from Effexor.

Absolutely––I am trying to figure out how to set up my notebook in a way that will also address what my dietitian wants me to track... Maybe I should stop being such a perfectionist, lol. I'll check back in once I have some data, because I'm not quite sure what I'll be looking for. Maybe we'll know it when we see it?

[Lojo585]

Oh, and just an update on the lifestyle medicine consultation earlier today.

 

It was pretty good––seems like she can support me in a number of lifestyle shifts that I have been wanting to make (e.g. whole food plant-based eating, exercise, mindfulness, and so on). I believe that all these things will help my symptoms and healing. One step at a time, of course.

 

She said she couldn't really advise about anything psychiatry-related, but I felt like she actually listened to me (as I sobbed off and on throughout the entire 90-minute appointment), but she did offer to contact a colleague in Psychiatry on my behalf to see if they know anyone who knows about antidepressant withdrawal. Really not holding my breath, of course.

 

But I don't think I have sat and talked with an MD about my health for 90 minutes, like, ever? Lifestyle/functional medicine is the future, folks.

[Lojo585]

Another day, another crying jag in a doctor's office...

 

Today it was the endocrinologist, whom I have been seeing for six months, trying to determine if there is an endocrine cause for high alk phos in my labs. (I've done ALL. THE. TESTS. and we haven't found anything to indicate any specific cause. Honestly, I'm starting to suspect the psych meds...)

 

So this endocrinologist has been very sympathetic as my life has essentially unraveled over the last few months, but these doctors... they just can't wrap their brains around the idea that what is happening to me is iatrogenic, and that probably no doctor in a 300+ mile radius knows how to fix it.

 

She did say, however, that she thinks I need to finish getting off the Effexor before I do any hormone stuff to treat any perimenopause symptoms. It was helpful to hear something that sounded like *guidance*, even if it's a bit discouraging to have to wait for something that could actually help me feel better.

[Cheeky]

Hey @Lojo585

Im sorry to read it didn't go well in the doctors office . I've personally given up on them , they don't know anything . 
I'm 48 and I think perimenopause is making things more difficult too . Hang in there and listen to the moderators ,,they know more then any doctor . 

[Lojo585]

@Cheeky Unfortunately, the mods here don't advise on hormonal implications of any of this process...

 

Actually, if there's not forum topic for this here, there should be! I will look. It's just too important to ignore or leave to the doctors who don't understand withdrawal.

 

Edit: here it is, "Older female issues: perimenopause, menopause, and withdrawal"

(If I can get a little snarky here for a moment––pretty sure this topic title was written by a man. Perimenopause can start in your 30s, people, and I take strong exception to the term "older"... ugh. OK, thanks for coming to my TED Talk, snark over.)

[Lojo585]

So I did a symptom journal for like 5 days... I don't think I'm seeing anything other than SYMPTOMS SYMPTOMS ALL DAY LONG, and focusing on them throughout the day in order to write them down is kind of making it worse. I took a break from tracking the last few days (got the new Covid shot on Friday), but I don't think I can go back to the daily planner method I read about in one of the posts here. If anyone has any ideas on other formats, lmk. I will say that tracking my food intake was helpful, since I'm trying to get back on the whole-food plant-based lifestyle medicine wagon. So I'll do that, and maybe other wellness habits and progress like physical acitivity, sleep, meditation, etc.

 

But...  #theplotthickens

• My new gyno NP has finally convinced me to fill a script for the estradiol patch, which I did. I think I am going to start it next week, unless someone can definitively tell me it will make my life any worse. My psych NP and endocrinologist both said they think it will help me, possibly a lot, although it takes a while to reach full effect (3 months or so). Fingers crossed.
• My GI doc has ordered a HIDA scan to see how my gall bladder is doing... So I guess now I'm back to the possibility that my GI symptoms and wonky labs over the last few years (high alk phos espeically) have not totally been related to drug side effects and/or withdrawal.
• I dug up my Genesight results from a bunch of years ago and sent them to my psych NP. (Effexor is in the yellow for me...) So this is interesting––upon seeing this, my psych NP reiterated her belief that I won't "stabilize" until after this drug is totally out of my system. She said that the gradual hyperbolic tapering protocol doesn't take these types of genetic interactions into account. (I poked around on some threads here on this site, and it sounds like she is right about that... I guess the question is, should they be considered? I'm assuming no one really knows?)
• I found an MD psychiatrist on the Mad in America directory who looks promising (Cecile Matip MD MPH)... Her bio specifically mentions tapering off psych meds, and the practice as a whole appears to be a combination of traditional and holistic psychiatry. They are based about 75 miles from where I live in NYS, they offer telehealth, and they even take my insurance!! I scheduled an intake for next week with her PA. (...Like, this is almost too good to be true.) Essentially, I am looking for another opinion at this point about tapering the Effexor (in relation to the Genesight results, or not...), as well as how and when to proceed with the Vyvanse taper. I literally cannot make a decision about this on my own.

And, I'm super proud of myself: I dragged my sick, sorry a** to TWO private pilates reformer sessions last week (I think this was week 3 of these sessions). We started super slow with qi gong movements for breathing and blood flow, and I was feeling so awful I didn't think I'd make it a full hour––but both times I ended up on the reformer table and I was DOING IT! (I have shared the main points of my withdrawal story with my trainer, and he has been really great about asking me how I'm doing and tailoring each session accordingly. Thankful that my family gifted me these sessions with him.)

 

Happy Labor Day, all!

[FireflyFyte]

On 9/1/2024 at 10:15 PM, Lojo585 said:

So I did a symptom journal for like 5 days... I don't think I'm seeing anything other than SYMPTOMS SYMPTOMS ALL DAY LONG, and focusing on them throughout the day in order to write them down is kind of making it worse.

 

For some, tracking symptoms can increase anxiety so if you are finding that to be true for yourself then it is more than fair to step away from the practice.

I will say, if your symptoms are all day long then I would lean towards them being related to withdrawals versus a reaction to your medication. Generally speaking, if you are experiencing an adverse reaction to medication you would notice an uptick in symptoms in a period after taking the medication.