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CCFB: introduction - 11 Months off Lexapro (off-label for headaches)


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Hi everybody.

 

I wanted to give a quick introduction here.  I'm a long-time "lurker."  I found SA before starting Lexapro in March 2018.  I read through the withdrawal accounts with some trepidation.  Before starting my SSRI medication, I thoroughly grilled my doctors about withdrawal—both primary and neuro.  Both insisted there was no SSRI withdrawal syndrome and that suggestions to the contrary were a myth. 

 

In short, I believed them over you.  This was a mistake.

 

I didn't have depression.  I wasn't suffering from anxiety.  I had chronic cluster headaches.  Like clockwork, each and every afternoon I would experience a stabbing sensation through my left eye, accompanied by ptosis, lacrimation, and agitation.  This is some of the worst physical pain imaginable.  It's abrupt and severe.  It feels like you're being stabbed in the eye.  I had tried a number of other invasive therapies before the escitalopram ("Lexapro").  I was initially resistant to the idea of an SSRI antidepressant, given the medication's poor reputation.  I wasn't depressed, and my life was going very well apart from the daily pain sessions.  But eventually I caved.  My neurologist was insistent that the SSRI could help me, when everything else had failed to control the headaches.  The pain was having an impact on my life, and I wanted to do everything I could to get out from under it.  I trusted my doctors. 

 

This was a disaster. Instead of any change in headache control, I got emotional blunting, bouts of chest pain, lethargy, and overall lack of motivation in the evenings (which I had used to write novels after work).

 

-

 

So I asked my primary about stopping escitalopram after 3 months.  That's when things got bad.

 

There aren't words to describe the sensation of pure, electric horror that runs through you when you reduce a Lexapro dose by 50% (on a physician's instructions).  Having browsed the SA forums, I knew the taper might not be so easy.  But I was still skeptical.  The "drug effect" of Lexapro hadn't been too strong.  I wasn't depressed before, so it hadn't done much (apart from side effects).  The withdrawal, though... well, the closest word is Hell.  I kept thinking of Rowling's description of Dementors in HP.  

 

I reinstated at 10mg after 3 days, then brought the problem to my doctors, primary and neuro.  Both initially rejected my symptoms—though this was tough, as I didn't have any psych issues to begin with.  To his credit, my primary really tried to find me a specialist to help with the taper.  There were none.

 

In the end, I insisted on a liquid solution and tapered, initially ~10% recursive per month.  I was able to go a bit faster than this, in the end.  It wasn't an easy process, but it seemed to get easier the further down I went.  I was off the med by December 2019.  I listened to my body and observed my symptoms with a one-month delay.  I don't mean to deviate from Alto's guidance here.  Patience is critical.  Having been through this, I find it easy to believe that you might cause enduring damage to your neurology by tapering too quickly.  I have experienced more mood problems since using Lexapro than in the rest of my life combined (especially during the taper and in the first ~3 months since stopping).  The main issues I encountered were sleep issues and reactivity.  It's almost as if the tapering brain has to re-learn how to regulate its sleep and emotional processes.  These are not good substances.

 

I am doing well now.  I am as productive as I was before the Lexapro, COVID-19 notwithstanding.   Through this, I have learned a lot about my mind and body, about our society, and about the relationship between industry, medicine, government, and public health.  It's surprising that doctors continue to deny the existence of this problem.  This site is more important than it has ever been.  I want to thank Alto, everyone who set this up, and everyone who maintains it.

 

-

 

8 things that helped me and might help you too:

 

(1) A supportive partner/family - this process is disconcerting in the extreme, and you may need someone to help guide you through it, as a "constant."

 

(2) A good medical team, and knowledge of how to find it.  

 

If a doctor denies existence of the withdrawal problem, find a second opinion.

 

(3) Patience - this process takes time, but the brain has an unbelievable ability to heal itself.  You need to go at your body's pace.

 

(4) Meditation - 10 minutes daily, preferably guided.

 

I find Jeff Warren's sessions on Calm/YouTube excellent. 

VR meditation is also nice, if you can manage it

 

(5) Sleep - tracked with a wearable.

 

Ideally, you want resting HR, HRV, and sleep phase estimations

I use Oura, but there are a ton of options in this space.

 

(6) Light exercise - a short walk every day (4,400-7,500 steps) seemed to help so much.

 

(7) Nutrition/supplements - I use several supplements and a particular diet (most of this is probably more applicable to my headache condition, though some supplements seemed helpful in withdrawal also). 

 

This site has a pretty extensive supplement section already.  I'm new here, so I won't bring these up in detail.

 

(8) Soft music in the background (helps mood more than you might think).

 

 

 

Edited by Gridley

Previously - Escitalopram ("Lexapro") (dangerous substance, do not start taking this): 03 - 05/2018 - 10mg // 05/2018 - 12/2019 - monthly recursive dose reduction to 0.

 

Always consult a qualified medical professional before taking any substance.

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  • Moderator

Welcome to SA, CCFB.  I'm very glad you've made it through to the other side and are doing so well.  Thanks you for the excellent list of things that helped you.  Yes, it is remarkable how obdurate doctors are about the existence of the obvious elephant in the room of withdrawal.  

 

Though you're finished with your taper and prospering, others might benefit if you were to complete a drug signature describing your doses and tapers, including dates.  A list format is best.  You'll need to use a computer rather than a phone.  Use this link and press "save" when you're finished.

 

Account Settings – Create or Edit a signature.

 

Once you've been drug-free for a year, it would be great if your could write a success story.  We really appreciate you're visiting here post-healing.

 

5 hours ago, CCFB said:

It's almost as if the tapering brain has to re-learn how to regulate its sleep and emotional processes. 

Exactly.  Rhiannon, one of our emeritus moderators, wrote the following about "growing a new brain."

 

Brain Remodelling 

 

I don't know if you've read Anatomy of an Epidemic by Robert Whitaker.  I highly recommend it.

 

 

Here's a video book trailer by the author, Robert Whitaker:

 

 
 

I just ran across a new interview with Robert Whitaker, author of Anatomy of an Epidemic, which I recommended in my previous post to you.  


https://www.scientificamerican.com/article/has-the-drug-based-approach-to-mental-illness-failed/?fbclid=IwAR01neKgirzCvmg67S05YbWivZLsvxXsW_E5ScBr5PZR8BEdGQtRlqPATfo

 

As you likely know, 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.  If you're not already taking these supplements, you might consider them.

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

Add in one at a time and at a low dose.

 

This is your Introduction topic, where you can ask questions and connect with other members.  We're glad you found your way here.

 
 

 

 

 

 

 

Gridley Introduction

 

Lexapro 20 mg since 2004.  Begin Brassmonkey Slide Taper Jan. 2017.   

End 2017 year 1 of taper at 9.25mg 

End 2018 year 2 of taper at 4.1mg

End 2019 year 3 of taper at 1.0mg  

Oct. 30, 2020  Jump to zero from 0.025mg.  Current dose: 0.000mg

3 year, 10 month taper is 100% complete.

 

Lorazepam 1 mg 1986-1991 CT, soon reinstated.  CT 2000. RI 1 mg 2011-2016.  Sept. 2016  0.625mg X 3

Nov.27, 2020 Begin 6-week Ativan-Valium crossover.

 

Imipramine 75 mg daily since 1986.  Jan. 2016 began every 3-weeks 10% taper, down to 15mg.  Aug 2016, discovered SA, updosed to 25mg and holding.  Taper is 66% complete.  

  

Supplements: omega, vitamins E and D3, magnesium glycinate, probiotic, melatonin .3mg


I am not a medical professional and this is not medical advice, but simply information based on my own experience, as well as other members who have survived these drugs.

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  • ChessieCat changed the title to CCFB: introduction - 11 Months off Lexapro (off-label for headaches)

Are you still having the cluster headaches? If so, what are you doing to treat them? What were your withdrawal symptoms from discontinuing Lexapro? I've never seen any Harry Potter movies or read the books so I don't know what Dementor is (although my daughter is begging me to watch the movies with her).

Sumatriptan - Started 1999 (100 mg x 10 per month) Stopped April 2020 - Restarted September 2020

Rizatriptan - Started 2007 (10 mg x 10-15 per month) Stopped April 2020 - Restarted September 2020

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10 hours ago, frohfroh said:

Are you still having the cluster headaches? If so, what are you doing to treat them? What were your withdrawal symptoms from discontinuing Lexapro? I've never seen any Harry Potter movies or read the books so I don't know what Dementor is (although my daughter is begging me to watch the movies with her).

 

I'm not having headaches. 

 

And to me, that's the key from all of this.  Lexapro was traumatic.  But it was a growth experience that allowed me to overcome the underlying headache problem.

 

The withdrawal process was Hell.  The initial 50% reduction resulted in an experience of extreme dread on day 3—almost like the shock of acute grief or terror, but a prolonged sensation lasting hours that would not abate with time.  I reinstated at that point.

 

When I began the incremental tapering process, some of the symptoms I experienced were:

  • Sleep maintenance insomnia (waking up at 4-5 am every morning)
  • Increased emotional reactivity (difficulty dealing with difficult people with grace)
  • Reduced stress tolerance
  • Lowered self esteem
  • Fatigue
  • Nausea
  • Trouble concentrating (this seemed to become less of an issue after the first few mg dose reduction)
  • Inability to perceive beauty in the world—my photography hobby took a hit.
  • Inability to think creatively—this made it difficult to write (started with the blunting/cloying from the Lexapro drug effects).

Every time I made an incremental dose change, I knew I was going to feel this way—and for the most part, I did.  My dose changes were careful and fractional, using a liquid (initially ~5-10% recursive).  (IMO, the liquid is necessary to successfully taper.)  Symptoms peaked at 3-4 days post-reduction, then gradually reduced.  Before I made a second dose reduction I waited a month to ensure that I was operating at a good baseline and not experiencing acute symptoms.

 

The withdrawal symptoms have abated now—hopefully for good.

 

-

 

This process was extremely uncomfortable.  The medical profession's ignorance about serotonergic withdrawal is profound.  But it was also helpful for me.  It taught me that no one is coming to solve your problems. 

 

Primary doctors are generally very busy and not always too informed about "niche" issues like medication deprescription.  You have to think that most of these people run into issues like this once every few years (at best).  And specialists have cognitive dissonance reduction biases about the medications they're prescribing—i.e. will they believe you, or will they believe that their entire specialty has been using harmful substances for years?  (My strategy for getting info from specialists was to say that I was "very sensitive" to dose reductions.)  Several of the doctors I consulted about the Lexapro withdrawal intimated that my problems had to do with a return to a "baseline depressed state" that had never existed.  I wrote a bestselling novel before Lexapro while managing a professional career, so I didn't agree with that.

 

I think I needed the discomfort of the Lexapro withdrawal as a catalyst to solve my headaches—a bit like this TEDx talk.  I ended up firing my primary and neuro, and finding new ones.  I did a lot of internet research on PubMed and G Scholar about serotonergic withdrawal and the pathology of migraine (which was my diagnosis at the time, ~150x as common in the general population as cluster headache).   I had labs done.  The only abnormal one was elevated LDL-P (other cholesterol numbers normal).  I came up with an extensive supplement list, suggested it to my new doctors, and I'm doing well now.  That was kind of a pleasant surprise actually.

 

I'm probably 95% headache-free now (as my doctor puts it, "in remission").  I've even been able to withdraw partially from one of my headache preventatives.  I don't know what lingering effects might remain from the Lexapro debacle, but I'm concentrating well.  My mood is good.  I'm sleeping.  2020 has been horrible all around, so I'm calling that a win.

 

I'm reluctant to share what I take here because I don't want people going through the Hell of withdrawal to think that it might help them and start "experimenting."  I don't know.  Supplements help me, but what helps me might not help someone else.  Maybe if there is some discreet way to share the list with mods, I'll do that.  But I don't want to throw people off-track.  This problem needs a lot more study.  This SSRI dependence/withdrawal issue is going to grow with our society's pathologizing of emotion, our deep social division, and our general lack of compassion with one another.  It makes a certain amount of sense that a civilization of people who treat each other in this way would want a class of medication that separates people from their feelings.  I do take magnesium citrate and DHA Omega 3s daily.  I've found both of these to be good.  A gluten-free diet has also helped me a lot.

 

 

 

Previously - Escitalopram ("Lexapro") (dangerous substance, do not start taking this): 03 - 05/2018 - 10mg // 05/2018 - 12/2019 - monthly recursive dose reduction to 0.

 

Always consult a qualified medical professional before taking any substance.

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Good Information. If I could just get control of my migraines. My neurologist offered me the new drug called Aimovig, but I am reluctant to try it. I had some success while on a ketogenic diet, but it seems to make me feel worse at this time. I'm glad your cluster headaches are under control for you.

Sumatriptan - Started 1999 (100 mg x 10 per month) Stopped April 2020 - Restarted September 2020

Rizatriptan - Started 2007 (10 mg x 10-15 per month) Stopped April 2020 - Restarted September 2020

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50 minutes ago, frohfroh said:

Good Information. If I could just get control of my migraines. My neurologist offered me the new drug called Aimovig, but I am reluctant to try it. I had some success while on a ketogenic diet, but it seems to make me feel worse at this time. I'm glad your cluster headaches are under control for you.

 

I tried Aimovig.  It gave me gut issues, and once it's injected you can't get rid of any side effects for 4-8 weeks (28-day half life).  Some people swear by it.  I also tried Ajovy, another CGRP mAb.  I had an immune reaction to that one.

 

I'm going to find a way to put everything I take in the signature I think.  But in terms of the headaches, the biggest improvements seem to have come from eliminating gluten (wheat) from my diet, then these:

 

Life Extension "Migra-eeze" (Butterbur/Ginger/B2) (make sure you don't take any butterbur with PAs, and discuss risks with your doctor)
Feverfew (Nature's Way) - 760mg/day
Magnesium Citrate (Pure Encapsulations) - 600mg/day (start lower than this)
D - 3000IU/day
Omega 3s (Nordic Naturals DHA) - 4980mg/day (start much lower than this)
CoQ10 - 200mg/day

NAC - 1000 mg/day
C - 1000mg/day
Quercetin - 250mg/day

Multivitamin (Thorne) - 2 capsules/day (standard dose)

 

I also take Zyrtec (cetirizine), but anecdotally that has its own withdrawal problem associated with it.  In terms of labs, my LDL-P was high.  This is an unusual cholesterol test.  So I have been taking steps to reduce that number.  This also seems to help the headaches.  From my research, I think I remember reading that the ketogenic diet can make this number worse.

 

Don't take anything on your own, without researching risks and benefits thoroughly and then talking to your doctor.  This isn't medical advice.  I'm only a patient, and not remotely qualified to offer that.

Previously - Escitalopram ("Lexapro") (dangerous substance, do not start taking this): 03 - 05/2018 - 10mg // 05/2018 - 12/2019 - monthly recursive dose reduction to 0.

 

Always consult a qualified medical professional before taking any substance.

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On 10/21/2020 at 2:33 PM, Gridley said:

Welcome to SA, CCFB.  I'm very glad you've made it through to the other side and are doing so well.  Thanks you for the excellent list of things that helped you.  Yes, it is remarkable how obdurate doctors are about the existence of the obvious elephant in the room of withdrawal.  

 

Though you're finished with your taper and prospering, others might benefit if you were to complete a drug signature describing your doses and tapers, including dates.  A list format is best.  You'll need to use a computer rather than a phone.  Use this link and press "save" when you're finished.

 

Account Settings – Create or Edit a signature.

 

Once you've been drug-free for a year, it would be great if your could write a success story.  We really appreciate you're visiting here post-healing.

 

Exactly.  Rhiannon, one of our emeritus moderators, wrote the following about "growing a new brain."

 

Brain Remodelling 

 

I don't know if you've read Anatomy of an Epidemic by Robert Whitaker.  I highly recommend it.

 

 

Here's a video book trailer by the author, Robert Whitaker:

 

 
 

I just ran across a new interview with Robert Whitaker, author of Anatomy of an Epidemic, which I recommended in my previous post to you.  


https://www.scientificamerican.com/article/has-the-drug-based-approach-to-mental-illness-failed/?fbclid=IwAR01neKgirzCvmg67S05YbWivZLsvxXsW_E5ScBr5PZR8BEdGQtRlqPATfo

 

As you likely know, 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.  If you're not already taking these supplements, you might consider them.

 

Magnesium, nature's calcium channel blocker 

 

Omega-3 fatty acids (fish oil) 

 

Add in one at a time and at a low dose.

 

This is your Introduction topic, where you can ask questions and connect with other members.  We're glad you found your way here.

 

 

 

Sounds good.  With my headaches, med-free is not on the agenda for me (at least for a long while).  I am still on two long-term Rx CH preventatives (as well as a number of supplements).  But eliminating the headaches & getting off the Lexapro was a big win.

 

I've read Whitaker.  He's thorough.  That thoroughness helped give me the courage to push back so hard on my doctors when they told me escitalopram was safe long-term in the face of the initial withdrawal problem.  They're just repeating what the institutions have told them, and those institutions are incorrect.  Change takes time.

 

About what is happening in the acute and prolonged phases of the withdrawal process, there is not a lot of research on the matter (unsurprisingly).  But I'd suggest that MDMA studies are a good place to start.  The pharmacology between MDMA and SERT inhibitors is distinct, but both work by flooding synapses with excess 5HT.  There is a lot of data on long-term MDMA sequalae.  Based on what I've found, I'd hypothesize that SERT-inhibitor withdrawal results from reduced 5HT neurotransmission caused by serotonergic axon terminal ablation in the acute "drug effect" phase - just like "ecstasy."

In the case of MDMA, flooding synapses with 5HT causes degeneration of "unneeded" 5HT axon terminals.  Withdrawal of the excess neurotransmitter ligand then causes a 5HT "deficit" and a serotonergic neurotransmission gap, across all 14 5HT autoreceptors.  This persists until the axons can regenerate, which can take time.  I would suggest that something similar is happening with our "antidepressants."

 

I think certain supplements and lifestyle choices may be effective in helping these axons regrow.  The brain isn't static.  It's constantly in flux. 

 

Lion's mane mushroom (hericium erinaceus) has some data to support its role in promoting the expression of neurotrophins NGF and BDNF, promoting brain healing (be aware that it may reduce libido).  Regular exercise and daily meditation may also help. 

 

Given this way of thinking about "antidepressant" withdrawal, serotonergic supplements 5-hydroxytryptophan ("5HTP") OR St. John's Wort (not together) might help close the 5HT neurotransmission gap until the brain can reach its previous state.  I have taken both, post-withdrawal, with varying degrees of success.  (I still take a low dose of 5HTP with each meal long term - SJW gave me insomnia.)  IMO serotonergic supplements should never be combined with a serotonergic "antidepressant" at any dose because of the risk of setting back the withdrawal process or even causing serotonin syndrome, which can be fatal.  It's astonishing to me that these two supplements are not regulated as medications in the States.   Keep in mind that 5HTP also has some potential long-term problems with catecholamine depletion or even heart valve damage (though I haven't seen any convincing research on the latter point).  So it's a bit risky.

 

This is all hypothesis and conjecture by a layperson.  I am not a medical doctor or a qualified researcher.  Nor am I qualified in any respect to give medical advice.  Do your own research and form your own opinions.  Run each and every medication and supplement you take by a qualified doctor, in detail, for safety. 

 

Previously - Escitalopram ("Lexapro") (dangerous substance, do not start taking this): 03 - 05/2018 - 10mg // 05/2018 - 12/2019 - monthly recursive dose reduction to 0.

 

Always consult a qualified medical professional before taking any substance.

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Your very thorough and you have done a lot of research. I appreciate it and will be reading the links you posted. My supplement list looks a lot like yours: High dose Vitamin C, CoQ10, Riboflavin, High dose Vitamin D, Omega 3 and Magnesium. I couldn't take any supplements at the beginning of my withdrawal. I still can't drink regular coffee, it used to be my favorite part of the day. Every time I try to drink regular coffee, I shake and tremble.

Sumatriptan - Started 1999 (100 mg x 10 per month) Stopped April 2020 - Restarted September 2020

Rizatriptan - Started 2007 (10 mg x 10-15 per month) Stopped April 2020 - Restarted September 2020

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  • 4 weeks later...
  • Moderator
ChessieCat

  

14 minutes ago, CCFB said:

 

I've had this happen too, but in my (very limited) experience, some doctors seem to be better at listening than others.  I keep thinking of Stuart Shipko or Peter Gotzsche - obviously these are some of the public ones, but my most recent MD has been open-minded to the idea of a withdrawal syndrome.  He helped me find the right kind of magnesium, omega 3, etc. (this is not an endorsement!)  Looking back, it might have been helpful to get a second opinion sooner.  Common sense is 100% a good guidepost.  

 

It sounds like you have been very fortunate.  We have members here who have experienced/are experiencing withdrawal symptoms (and some of them have been physical, some the member never experienced the issue before reducing/stopping their drug) and their doctor/psychiatrist has told them that it is in their head/they are causing their symptoms (my words, not theirs but close enough).

 

I suggest that you check out the following topic:

 

The WORST of doctors thread...statements that defy belief

NEW!!!              INTERVIEW with Altostrata, SA's founder               NEW!!! 

 

ADs since ~1992:  25+ years - 1 unknown, Prozac (muscle weakness), Zoloft; citalopram (pooped out) CTed (very sick for 2.5 wks a few months after)

Pristiq:  50mg 2012, 100mg beg 2013 (Serotonin Toxicity)  Tapering Oct 2015  Current from 14 Nov 2020:  Pristiq 0.50 mg

My tapering program                                      My Intro (goes to my tapering graph)

My website - includes my brief history + links to videos & information on the web

PLEASE NOTE:  I am not a medical professional.  I provide information and make suggestions.

 

REMINDER TO SELF:  I don't need the drug now, but my still brain does.

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20 minutes ago, ChessieCat said:

  

 

It sounds like you have been very fortunate.  We have members here who have experienced/are experiencing withdrawal symptoms (and some of them have been physical, some the member never experienced the issue before reducing/stopping their drug) and their doctor/psychiatrist has told them that it is in their head/they are causing their symptoms (my words, not theirs but close enough).

 

I suggest that you check out the following topic:

 

The WORST of doctors thread...statements that defy belief

Not surprising. 

 

Frankly, there was a big change in the way some doctors treated me on Lexapro and off.  And I didn't like it.  It was as if the drug created a perverse dependence on the medical system that the initial presceibing MDs were inclined to want to ascribe to me - i.e. my own native personality defects, etc.  Post-Lexapro, the initial prescribing team even started treating my headaches as though they were in my head.  (They had failed to deduce the problem before that for about a year - it was Celiac.)  The withdrawal was very tough, and lasted months. 

 

The new MD is much better.  I wouldn't say he believes in a big underreported AD withdrawal problem (haven't asked), but he believed me about my Lexapro problem and would not Rx another AD.  Instead, he worked with me to set up a supplement, meditation, and exercise regimen. 

Previously - Escitalopram ("Lexapro") (dangerous substance, do not start taking this): 03 - 05/2018 - 10mg // 05/2018 - 12/2019 - monthly recursive dose reduction to 0.

 

Always consult a qualified medical professional before taking any substance.

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