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Mars15: Lexapro/Escitalopram possible prolonged withdrawal

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Mars15

Hello everyone,

 

Before I begin, I want to apologize for the length of my first post. While some of the information may seem irrelevant at first, I'm trying to provide context and useful details to be as helpful as possible. I have tried to follow the forum guidlines as much as possible, but there is a lot to read up on, so if I am missing anything or anything needs adjusted please let me know.

 

I am a male student in my early thirties who was first prescribed Lexapro/Escitalopram when I was nineteen for situational anxiety. Following the doctor's taper advice, I went on and off it twice in my twenties. The reason I returned to the drug both times was, again, situational anxiety that became debilitating to daily life. I did not have any problems with these tapers, which were completed over a few weeks.

 

My latest period on the drug started in late 2013. I was on this dose, Lexapro/Escitalopram 20mg, for approximately six years. Last fall, I decided I wanted to taper off for good. I was experiencing some effects such as sleeping long periods, morning anxiety, and a feeling of a constricted nasal passage in the morning that I thought might be related to the drug. More generally, being on the drug made me feel ashamed and I was coming upon a turning point in my life that had made me committed to living healthier.

 

Given my experience with past tapers, I conceived a taper that, at the time, seemed cautious since it was a longer plan. I would alternate days and divide the dose in half every two weeks. When the dose became too small to prepare with a pill cutter, I used a pill crusher and made a water/drug solution that I administered with an oral syringe. This taper was completed from August to December 2019, over approximately four months. The negative effects I remember when tapering was some occasional irritability/emotional oversensitivity. I now realize that, given my situation, this taper was foolish and too fast. In my mind, I was just trying to do what I thought was a more careful version of the method I used in the past.

 

In the middle of January 2020, I noticed one of my testicles was swollen. My PCP had me get an ultrasound, which indicated that I had developed a small hydrocele. A hydrocele is an accumulation of fluid that is generally harmless, but sometimes requires surgery to remove. Accompanying the hydrocele was some penile pain/burning. Although a urine test indicated that this was not from a urinary infection or STD, my doctor prescribed an antibiotic. I presume he was suspecting an infection of another kind.

 

I began the antibiotic on February 13, and after about five to six days, I began noticing some very distressing symptoms: confusion, bad mind fog, short-term memory issues, anxiety, strange vertigo-like sensation behind the eyes, inability to feel emotions. I woke up in the middle of the night on day seven with a panic attack like none I'd ever had before. It was relatively short, but my heart felt like it was going to pound out of my chest, which isn't a symptom associated with my past panic attacks. The symptoms I described would come in waves of a few hours and then attentuate. Around days seven and eight I also was going in out of something I would describe as a dissociative state combined with intense anxiety. It was very bizarre and unlike anything I had ever experienced berfore. I just felt disconnected from everything, the world felt corrupted, and combined with the aforementioned symptoms was very terrifying.

 

At the time the first symptoms (mind fog, anxiety) appeared, I thought they might be connected to coming off the SSRI. This seemed logical considering that they were primarily psychological symptoms. I went online and learned for the first time about the possibility of protracted withdrawal from SSRIs. My understanding prior to this was that talk of "discontinuation/withdrawal syndrome" referred to the brain zaps/flu-like symptoms that sometimes accompany tapering.

 

Nevertheless, on day eight of the antibiotic (February 20), it occurred to me that the antibiotic was the only new factor to be introduced during the preceding week and these symptoms were so qualitatively different than anything I had ever felt before. After looking it up online, I found reports of this particular antibiotic causing the previously mentioned side effects - anxiety, panic attacks, psychosis, etc. (see https://www.medications.com/doxycycline-hyclate/39445). After learning this on the evening of day eight, I decided to quit taking the antibiotic, and within two to three days the side effects mostly subsided.

 

The following week (February 23), the penile pain/numbness/occasional paresthesia returned. I had daily anxiety for a couple weeks worrying about this issue until the urologist did a physical examination (March 5) and assured me that everything was normal, but that the symptoms could possibly be coming from an issue with my pelvic floor muscles. She recommended that I look into pelvic floor therapy, which I have yet to look into. Since the urologist appointment, the penile symptoms have largely disappeared, which leads me to believe that they may have been psychosomatic effects combined with lingering antibiotic side effects.

 

Most recently, over the last week (March 9-15), I've noticed a return of some of the psychological symptoms I was experiencing before while on the antibiotic, only not quite as intense: hours-long waves of anxiety, mind fog, heart pounding, memory issues. I'm just generally feeling "out of it" and not "like myself," kind of like a hangover. The last two nights I have had problems sleeping because of anxiety and heart palpitations.

 

I am concerned with what is causing these issues. Some people who took the antibiotic I did said the side effects lasted weeks or months afterwards. This seems possible given that antibiotics can kill a lot of the "good" gut bacteria that have some relation to mood regulation. What is confusing is that some of the side effects of the antibiotic seem to overlap with those of SSRI withdrawal. So could it be that one triggered or exacerbated the other or that it is a combination of both?

 

The last two months have been some of the hardest of my life. From being in the emergency room worried about the antibiotic damaging my brain, to worrying about having a debilitating genital issue that would ruin my ability to form a relationship or have kids, to worrying about the possibility of SSRI withdrawal, it's been one thing after the other. Currently, I'm dealing with trying to finish my semester remotely while holed up with my family because of the coronavirus situation. One family member was recently discharged from the hospital and requires a lot of constant assistance with certain medical procedures and therapies, so that has been stressing everyone out. So it is also possible that I'm just feeling burned out.

 

In the meantime, I have started seeing a cognitive behavioral therapist who is sympathetic to people weaning of antidepressants and transitioning to more wholistic therapy. She thinks it is conceivable that the issue is any or all of the things I described above, and has advised me to live as healthy as possible in the meantime. I have adjusted my diet (including adding probiotic foods), spent time walking daily, cut out caffeine, and started on fish oil, a multivitamin, and gingko biloba.

 

Overall, my purpose for posting here is to get any kind of guidance or perspective that may be helpful. I understand this is a complex situation that doesn't have a clear response. At this point it seems my options are to wait it out or to try to reinstate the Lexapro/Escitalopram at a lower dose which seems successful for some, although from reading here it seems that at three months since the last dose I am approaching the end of the window of opportunity where that seems effective. I found a psychiatrist from the forum's "recommended doctors" section who lives close to me and seems to recognize withdrawal, so scheduling an appointment is a possibility.

 

Finally, I want to thank the administrators and moderators of the forum for their work in selflessly providing a space for those of us in need to receive advice.

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Gridley

Welcome to SA, Mars15.  I'm sorry you're going through this.  Thank you for your thorough and helpful introduction post.

 

Antibiotics can certainly exacerbate withdrawal.  As you know, your taper was too fast, and, as you noted, the symptoms you describe are typical withdrawal symptoms.  I can't say whether you're experiencing sides effects of the antibiotic, but I would think that you are dealing with withdrawal. Though you were able to taper off Lexapro twice before without difficulty, the nervous can become sensitized by these tapers, through a process known as kindling, and withdrawal can result  when you try to taper again.

 

What is withdrawal syndrome.

 

Daily Checklist of Antidepressant Withdrawal Symptoms (PDF) 

 

When we take psychiatric 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. Rebuilding the neurotransmitter production and reactivating the receptor and transporter cells takes time -- during that rebuilding process symptoms occur.   

   On 8/30/2011 at 2:28 PM,  Rhiannon said: 
When we stop taking the drug, we have a brain that has designed itself so that it works in the presence of the drug; now it can't work properly without the drug because it's designed itself so that the drug is part of its chemistry and structure. It's like a plant that has grown on a trellis; you can't just yank out the trellis and expect the plant to be okay. When the drug is removed, the remodeling process has to take place in reverse. SO--it's not a matter of just getting the drug out of your system and moving on. If it were that simple, none of us would be here. It's a matter of, as I describe it, having to grow a new brain. I believe this growing-a-new-brain happens throughout the taper process if the taper is slow enough. (If it's too fast, then there's not a lot of time for actually rebalancing things, and basically the brain is just pedaling fast trying to keep us alive.) It also continues to happen, probably for longer than the symptoms actually last, throughout the time of recovery after we are completely off the drug, which is why recovery takes so long.
 
 
 
Reinstatement of a very small dose of the original drug is the only known way to help alleviate withdrawal syndrome.  The only other alternative is to try and wait out the symptoms and manage as best you can until your central nervous system returns to homeostasis.  Unfortunately no one can give you an exact timeline as to when you will start feeling better and while some do recover relatively easily, for others it can take many months or longer.  
 
Reinstatement isn't a guarantee of diminished symptoms for everyone but it's the best tactic available.  I'm not sure of th date of your last dose.  You're either still in the time period where reinstatement predictably works, up to 3 months after last dose, or just outside it.  The three-month time frame is a guideline and isn't absolute.  We usually suggest a much smaller reinstatement dose than your last dose.  These drugs are strong, and when reinstating it is better to start with a small amount and increase if symptoms remain unbearable. Your system has become sensitized and If you take too much it may be too much for your brain and can cause you become unstable.  Then, once you've stabilized on that dosage, which can take several months,  you can begin a 10% per month taper down to zero.   Please read:
 
About reinstating and stabilizing to reduce withdrawal symptoms. -- at least the first page of the topic
 
If you're interested in reinstatement, I need to know your original dose of Lexapro, the dates and doses of your taper, your final dose and the date of that dose.  Then I can suggest a reinstatement dose.  Please don't reinstate without letting me suggest a dosage.
 

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 (glycinate is a good form) 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) 

 

Add in one at a time and at a low dose in case you do experience problems.

 

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

 
 
 

 


 

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Mars15

Thank you for your response.

 

My original dose was 20 mg. I don't remember the begin date of the taper with certainty, but it was between the middle of August 2019. I alternated days and divided the dose by half every two weeks. So the taper would be: 20mg -> 10 -> 5 -> 2.5 -> 1.25 -> 0.625 -> 0.3125 ....

 

Unfortunately, I cannot remember the amount of the final dose. My best guess would be between 0.0 and 0.3125 mg. Certainly no higher than 0.625 mg. Once the dose became low enough that it became harder to use the oral syringe with the solution, I changed the dilution so that it was easier to read the measurement lines on the syringe. This probably sounds disorganized, but it was more intuitive for me to remember and recognize what line on the syringe to fill up to than to remember a fraction such as 0.625 or 0.3125. Especially since such fractional doses would be difficult to measure using the marking lines on the syringe.

 

For the date of the last dose I am a little more certain, because of life events that were occuring at the time. I believe it was December 13, 2019, or within a few days of that date. So, at worst, I suspect I am a few days outside of the three month window.

 

I am looking at the chart provided here: https://content.invisioncic.com/r138344/monthly_2019_02/image.png.b3f6d0acf198379ac40070b8259a5325.png

 

It appears some Lexapro users had success when reinstating with a dose smaller than the final dose, even outside the three month window. Obviously this is andecdotal and a very small sample size, so not scientific by any means. My symptoms have been manageable so far, but I am concerned about them progressively becoming worse. Is there usually a pattern to the intensity of withdrawal symptoms? Do they tend to start at their worse and then get better gradually? I know generally this process is unpredictable, but others say the "waves" are supposed to become smaller and "windows" bigger as you recover. But this observation says nothing about the intensity or variety of symptoms.

 

Once again, thank you for your help.

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Gridley

@Mars15

 

Thanks for the information, Mars15.

 

Are you able to measure a dose of 0.1mg?  If so, that's the dose I'd recommend reinstating.  I know it seems like a tiny amount, but, as I said earlier, these drugs are strong and it's better to start low.  Take the dose every day at the same time

 

It will take about a week for it to get to steady-state in your bloodstream; the effect should get stronger during that time. If 0.1mg is enough, it still may take some weeks or months for your nervous system to settle down. You probably will continue to have waves and windows (ups and downs), but symptoms won't be as intense. 

 

If it seems you need a higher dose, it will be easy to very carefully increase it by using the liquid.

 

It's a good idea to keep daily notes on paper to track how your reinstatement is going.

 

Please let us know how you're doing.

 

 

 

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Mars15

I apologize for responding again so quickly, but I think I may have been editing my original post as you were posting your reply. Would you be able to address my questions in the final paragraph of my last post about the pattern in intensity of withdrawal symptoms and the possibility of their progression?:

Quote

I am looking at the chart provided here: https://content.invisioncic.com/r138344/monthly_2019_02/image.png.b3f6d0acf198379ac40070b8259a5325.png

 

It appears some Lexapro users had success when reinstating with a dose smaller than the final dose, even outside the three month window. Obviously this is andecdotal and a very small sample size, so not scientific by any means. My symptoms have been manageable so far, but I am concerned about them progressively becoming worse. Is there usually a pattern to the intensity of withdrawal symptoms? Do they tend to start at their worse and then get better gradually? I know generally this process is unpredictable, but others say the "waves" are supposed to become smaller and "windows" bigger as you recover. But this observation says nothing about the intensity or variety of symptoms.

 

I have not decided whether to reinstate yet and am seeking advice on the weighing the benefits and risks. I currently have a 90 day supply of 20 mg Lexapro that is good until August 2020, and a pill crusher/cutter so I can use those supplies, but I think it will be hard to measure 0.1 mg from the 20 mg tablet. Is it possible to crush the pill, weigh out 0.1 mg with a digital scale, and then make a solution with water? I do not have an oral syringe at my current location. I could use fast delivery online, but I'm not sure how reliable that will be given the current national situation here in the USA because of the coronavirus. I could possibly get one at a nearby drug store.

 

Thank you for the advice on the possible reinstatement dose, and thank you especially for your fast replies.

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Gridley
1 hour ago, Mars15 said:

My symptoms have been manageable so far, but I am concerned about them progressively becoming worse. Is there usually a pattern to the intensity of withdrawal symptoms? Do they tend to start at their worse and then get better gradually? I know generally this process is unpredictable, but others say the "waves" are supposed to become smaller and "windows" bigger as you recover. But this observation says nothing about the intensity or variety of symptoms.

There's no way to predict the sequence and severity of symptoms or whether they'll progressively get worse.  It is known that often (but not always)  there is a 3-month wave and a 9 month wave.  These waves resolve in time but again how much time is unknown.  As you progress from the acute stage of withdrawal (around two months) into the protracted stage, there will be a windows and waves pattern that very slowly improves with waves getting shorter and windows longer.  

 

The Windows and Waves Pattern of Stabilization

 

1 hour ago, Mars15 said:

but I think it will be hard to measure 0.1 mg from the 20 mg tablet. Is it possible to crush the pill, weigh out 0.1 mg with a digital scale, and then make a solution with water? I do not have an oral syringe at my current location. I could use fast delivery online, but I'm not sure how reliable that will be given the current national situation here in the USA because of the coronavirus. I could possibly get one at a nearby drug store.

 

 

The Gemini-20 digital scale that many members use is only accurate to around 3mg pill weight.  Every brand of Escitalopram has a different ratio of pill weight to active ingredient.  For example, my brand of 20mg Escitalopram weighs around 200mg and thus has a ratio of about 10:1 pill weight to active ingredient. The limitation of the scale means that when I get down below 0.3 active ingredient the scale is no longer going to be accurate for me and I'm going to have to eyeball it.  That's fine for me in tapering (or it's going to have to be), but eyeballing won't work for you in getting a consistent 0.1mg dose.  You'd be better off trying to get a syringe.  From the doses you measured out during your taper, you're proficient at its use and that would be the best way to reinstate, should you choose to do so.

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Mars15

I read the entire thread on reinstatement you recommended above: https://www.survivingantidepressants.org/topic/7562-about-reinstating-and-stabilizing-to-reduce-withdrawal-symptoms/.

 

While I understand that reinstatement of a low dose is the only known method to relieve withdrawal symptoms, I am confused as to the theory behind reinstatement. It's not clear to me what the consensus of the goal of reinstatement is, or if there is a consensus among forum members about what the goal is. Is the purpose of reinstatement to try to stabilize withdrawal symptoms in any case, or to is it just to mitigate them in the case that they have become unbearable? In other words, is it always preferrable to try to stop withdrawal symptoms by reinstating while within the appropriate time window, or is it only recommended for those whose withdrawal symptoms have become so severe that they are unbearable? Is the argument in favor of reinstatement saying that reinstatement is a relatively low-risk method to stabilize and mitigate withdrawal symptoms before they worsen?

 

I ask because while my symptoms are certainly distressing, I have found them managable so far. On the other hand, if the purpose of reinstatement is to be a low-risk method to stop withdrawal before it worsens, then reinstatement seems appealing to me. I am trying to approach the difficult decision of whether to reinstate as rationally as possible given the limited information we have and our knowledge of its unpredictability. The only way to do this seems to be to weigh the possible benefits vs. risks given my particular situation. The issue to consider seems to be whether the risk of my condition worsening from such a small reinstatement dose is more likely than it worsening from trying to wait it out. What worries me is my previous history of tapers, my long periods on the SSRI, and my most recent fast taper alternating days. These factors seem to have made me susceptible to symptoms worsening. If this the case, then if the reinstatement sets me back a little, then it seems the harm done would be insignificant considering my condition is likely to worsen anyway.


Finally, regarding the actual details of the possible reinstatement. I ordered oral syringes, but the soonest they will arrive is Friday, so I will make my decision by then. The only supplements I'm using now are a multivitamin and fish oil. I stopped taking Ginkgo Biloba in case that could cause a reaction. Gingko evidently has a half-life of 4-6 hours, so by Friday less than one percent should be left in my system. This does not seem like it would be an issue. My last question pertains to how difficult the future taper will be to execute assuming the reinstatement successfully stabilizes my system. 10% of 0.1 mg is 0.01 mg so the dose of the first taper after the reinstatement dose would be 0.1 - 0.01 = 0.09 mg/mL. The dose after the next taper would be 0.081 mg/mL. I will using 1 mL syringes with measurement line increments of 0.02 mL (https://www.amazon.com/gp/product/B01N01TO2O/ref=ppx_yo_dt_b_asin_title_o00_s00?ie=UTF8&psc=1). Do you think it will be possible to precisely measure such small doses, especially since some doses go out to the thousandths place?

 

Thank you again.

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Gridley
6 hours ago, Mars15 said:

is it just to mitigate them in the case that they have become unbearable?

This is the purpose rather than mitigate before they worsen.

 

6 hours ago, Mars15 said:

, I have found them managable

Then you might not want to reinstate.  Have you seen any improvement, however minor?

 

6 hours ago, Mars15 said:

you think it will be possible to precisely measure such small doses, especially since some doses go out to the thousandths place?

I don't know.  

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Mars15

The first symptoms appeared about a month ago, a few days after I started the antibiotic. The symptoms (confusion, mind fog, memory issues, anxiety, depersonalization/derealization) came in waves of a few hours for a period of about five days. This was from approximately February 17 to February 21. They disappeared a couple days after I stopped taking the antibiotic. I did not have any of these symptoms again until the period of March 9 to March 17 (today) besides a little anxiety which I think was primarily related to life stressors such as school and my other medical issues.  Would the interim period where I was free of symptoms be considered an improvement? It's only been about a month since I started having any symptoms, so at this point it is difficult for me to recognize any pattern in improvement or worsening of the symptoms, especially considering the complicating factor of the antibiotic.

 

The symptoms I am most concerned about are confusion, memory problems, and mind fog. I am a student in the process of applying for jobs after graduation, so I am concerned that these symptoms will affect my ability to perform at work. The unpredictability is scaring me. I feel like I could manage the symptoms if they were a couple hours a day or a couple days a week, but if they persist for an indefinite period of time or if they worsen, I can see them becoming debilitating.

 

I have calculated the first twelve tapers after the possible reinstatement dose using a 10% taper:

 

reinstatement dose: 0.1 mg

1st taper: 0.09 mg

2nd taper: 0.081 mg

3rd taper: 0.0729 mg

4th taper: 0.06561 mg

5th taper: 0.0591 mg

6th taper: 0.05319 mg

7th taper: 0.047871 mg

8th taper: 0.0430839 mg

9th taper: 0.03877551 mg

10th taper: 0.034897959 mg

11th taper: 0.0314081631 mg

12th taper: 0.02826734679 mg

 

It seems that the lowest volume of syringe sold is 0.5 mL or 1 mL, with increments of 0.1 mL. Using the taper transitions from above, starting with the 5th taper, the number in the hundredths place stays the same, while the numbers in smaller decimal places change. For example, tapers 9 through 11 are all 0.03 mg with fractional values after the hundreths place (0.03877551 vs. 0.0314081631 vs. 0.0314081631). At what decimal place do the values become negligible? Could I just taper from 0.09 mg  to 0.08 mg to 0.07 mg to 0.06 mg and so on, and disregard the remaining values after the hundredths place, or is that too risky? If it is too risky, has anyone discovered a method to measure the liquid to further decimal places?

 

 

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Gridley
12 minutes ago, Mars15 said:

Could I just taper from 0.09 mg  to 0.08 mg to 0.07 mg to 0.06 mg and so on, and disregard the remaining values after the hundredths place,

It seems to me that at those low doses you could disregard the remaining values.

 

16 minutes ago, Mars15 said:

Would the interim period where I was free of symptoms be considered an improvement?

 

It's hard to say given the complicating factor of the antibiotic.

18 minutes ago, Mars15 said:

The unpredictability is scaring me.

  I understand your need for mental clarity.  While sometimes a reinstatement can make things worse, your RI dosage is so small that, if you start feeling worse (which would be fairly immediate) you could simply stop the reinstatement and likely without any repercussions that didn't resolve quickly.

 

13 minutes ago, Mars15 said:

 

I have calculated the first twelve tapers after the possible reinstatement dose using a 10% taper:

That's a helpful calculation, and 0.02 is a good low dose to jump off from.

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Mars15

I am fairly certain that I will attempt to reinstate with 0.1 mg tomorrow night. The symptoms attentuate a little on some days, but have been more or less constant for over a week. The stories of other posters with cases similar to mine seem to indicate that this will be a prolonged recovery in any case, and reinstatement seems to be a relatively low-risk strategy to try to mitigate symptoms. I suspect that the answer is unknown, but I would be curious to know if reinstatement is more successful at mitigating some symptoms when compared with others?

 

It should be simple at this point, but since I am having problems thinking clearly, I would appreciate it if someone could double check my reasoning for the dose procedure:

 

I have 20 mg Escitalopram pills and 1 mL disposable syringes. Thus, if I dissolve the 20 mg pill in 20 mL of water, this means there will be a ratio of 1 mg of Escitalopram per 1 mL of water. So I should be able draw 1 mL from the 20 mL solution into the syringe and then dose 0.1 mL using the measurement lines on the syringe. Does this seem correct?

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manymoretodays
Posted (edited)
23 minutes ago, Mars15 said:

I suspect that the answer is unknown, but I would be curious to know if reinstatement is more successful at mitigating some symptoms when compared with others?

Hi Mars,

Has it been 3 months now, since your last dose of Lexapro?  All I know, is that reinstatement typically works better, if it is done, as soon as WD symptoms appear.  Unfortunately, not many of us were aware of that, nor our prescribers.  And that's a good low dose reinstatement to try, the 0.1 mg/mL dose.

23 minutes ago, Mars15 said:

I have 20 mg Escitalopram pills and 1 mL disposable syringes. Thus, if I dissolve the 20 mg pill in 20 mL of water, this means there will be a ratio of 1 mg of Escitalopram per 1 mL of water. So I should be able draw 1 mL from the 20 mL solution into the syringe and then dose 0.1 mL using the measurement lines on the syringe. Does this seem correct?

Yes, this sounds correct.  I think, if I were you, I would go ahead and mix the 0.1 mL or mg, in your present dilution, with something, or you could draw up some water in your syringe after you take your dose, and squirt that in your mouth too, to get the last traces out.  Be consistent with your method too, do it the same way, for mixing, and then taking your dose......every time.  That can pay off.

The Rule of 3 KI's, simple, slow, stable

 

You could do a 20 mg pill in a greater amount of water, so that your measurements aren't so small too.

 

Tips for tapering off Lexapro(excitalopram)

^ should be helpful too, in your considerations.  It does come in a pharmacy liquid too, already mixed.

Additional helpful links:

How to make a liquid from tablets

Questions and answers about liquid medications, use by date, expiry

Using an oral syringe and other tapering techniques

 

Do keep your solution covered, protected from light, and in the refrigerator.  An amber bottle, or I put mine, in a brown paper bag.  Swirl it around a bit again, for successive doses, after the first.  And you should probably discard and remix every 3 days.  You might be able to use the same solution for longer, but I wouldn't go beyond 5 days, with it, before mixing a new batch.

 

And keep us updated please.  Ask away too, if further questions arise.

 

Best, L, P, H, and G,

mmt

Edited by manymoretodays

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Mars15

Thank you for the reply, manymoretodays.

 

My last dose was December 13, 2019, or within a few days of that date, so I am about 3.25 to 3.5 months off now. I understand 3 months is the recommended cutoff point for resinstatement, but that it is not necessarily set in stone. In my case the reinstatement dose seems so small that the possible benefits seem to outweigh the risks.

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Mars15

I want to thank Gridley and manymoretodays for their help so far. If anyone else would like to weigh in, I would appreciate the additional advice. Since this is such an unpredictable process, I think different perspectives are valuable.

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brassmonkey

Hi Mars-- Gridley and MMT have given you some good information, but I would like to add somethings to help clarify.

 

Reinstatement is a last ditch effort to help reduce symptoms that have become unbearable. It is not a method to help fine tune things or smooth out bumps. If a person is functioning in their current state then it is not a good idea. Doing a fast taper or CT can leave the body in a highly sensitive state and any increase in the medication, even a minuscule amount, can cause an adverse reaction.  The further from the stop date the more risk there is of this happening. An adverse reaction is a highly unpleasant thing which is why we only recommend reinstatement for people who are severely debilitated by their symptoms. I understand your desire to be performing at a high level because of your current life situation, but unless you can't get out or bed, wash and dress yourself I would not recommend a reinstatement.

 

 

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Mars15

Thank you, brassmonkey, for being candid. I am feeling very conflicted about this now.

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Mars15

The more I read, the more I realize I am in deep trouble given my history: I started on Lexapro at age nineteen, on and off the drug, relatively high dose, skipped doses, fast taper. So far, one contributor strongly advised against reinstatement and two suggested a dose and left it to my discretion. The reinstatement option at least seemed like a hail mary, considering I'm in for a world of pain in any case. Does reinstatement tend to be more successful at mitigating some types symptoms rather than others?

 

For the past two weeks (since around 3/14) the cognitive symptoms have been almost nonstop - derealization, brain fog, memory problems. There was a couple days where they attentuated and one day where I felt relatively normal. The main thing that gives me hope is that for a month between the first wave of cognitive symptoms, which I attributed to the antibiotic, and this second wave, I was completely free of these symptoms. I felt completely normal besides some physical symptoms (numbness, parathesia) that had me visiting various doctors. I now realize that the physical symptoms may have been WD symptoms too.

 

At this point, my main focus is make sure I finish this semester and graduate. I've come too far to lose my degree with only a couple weeks to go. Once I get through that, I can form a contingency plan for proceeding. I want to make sure that all the proper preparations have been made before things worsen:

 

(1) Sort out my living condition. My apartment lease runs out this summer. If things get bad enough I will move back with my family. I'm currently living with them because of the coronavirus situation anyway.

(2) Solidify my support network. I plan to put together some resources including videos and articles that will help to explain WD to my family. I know it will be hard for anyone to understand or even believe what we are going through without personal experience, so I will try to stick to testimony from sympathetic and credible psychiatrists and journalists.

(3) I have been meeting with a cognitive behavioral therapist. I specifically picked someone sympathetic to ssri withdrawal. I'm not sure how much talk therapy could help in this situation, but right now it is beneficial, because my therapist is the only person who understands what I'm going through besides the people on this forum.

(4) Consider seeing a nutritionist and functional medicine specialist. I understand that these are unlikely to have a major impact, but it can't hurt to check for nutritional or hormonal deficiencies that could exacerbate symptoms.

(5) Try to figure out if work is tenable, and if so, what kind. Flexible, remote work would allow me to work at times when I am most capable, but I can see how being isolated at home could impede recovery. Part-time work at a job less cognitively-intensive is also an option.

(6) I've already made an effort at eating better since the beginning of the year. I've cut out caffeine and alcohol, reduced sugar, and try to stick to eating healthy proteins, vegetables, greens, fruits, and seeds.

(7) I am walking two miles every day on a nature trail.

(8) I am taking the recommended supplements (fish oil and magnesium).

 

My biggest fear right now is keeping my support network onboard once things get bad. I am afraid that if things get bad enough my family will just commit me to a psych hospital. Not because they don't care about me, but because they do care about me and would defer to "experts" if things got out of control. I don't know what the law for my state is regarding forced treatment, but I am afraid with my symptoms being what they are, the doctors would diagnose me as bipolar (or whatever else suits their imagination) and force me to take more psych meds. This is why it is important for my family to understand the reality of the WD phenomenon. But it seems so much to ask of someone to expect them to support you through indefinite suffering for a medical condition that isn't treated or even widely recognized.

 

Any further advice or preparation strategies to add to my list would be appreciated. Thanks once again to all who have monitored my situation so far.

 

 

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Mars15

I thought of a couple more points for my preparation list:

 

(9) Look into non-medication solutions for anxiety

(10) Connect with forum members who have similar symptoms/situation

 

Are the symptoms I'm describing common or is this serious? The cognitive symptoms are debilitating. It is hard to distinguish the derealization from the mind fog and memory problems, but I suppose these symptoms tend to overlap or reinforce each other. I feel like I can't remember anything that happened hours earlier or a day ago. Other than brief impressions, I feel like I have no memory of the last two weeks since these symptoms flared up. Sometimes my mind just involuntarily zones out for a while. I feel like I have no emotions, personality, or personal history. It feels like I have always been suspended in this two week wave of derealization and mind fog.

 

What's interesting is that these cognitive problems are somewhat circumscribed. While I have problems remembering what I had for dinner last night, I am still capable of improvising novel music over chord changes on a musical instrument. I did this to try to prove to myself that haven't lost myself completely. This seems to show that only certain types of activity are being impaired, while others aren't such as procedural and muscle memory. The only thing that gives me hope is that these symptoms subsided for a month before they came back again. In that interim period I felt cognitively normal besides stressing out over other health issues. But this wave feels different in some way.

 

My mind keeps toying with the idea of reinstating. I know I've probably received all the advice you have to offer about that, and I understand only I can make that decision, but I just feel so lost. If I did reinstate using 0.1 mg I suppose the 10% taper would be even more difficult than normal because I hear it gets more difficult at low doses. So I would possibly even need to reduce by less than 10% and I would be working with such small doses that I would probably need to dilute the solution heavily. This just seems so intractible. I've heard of people jumping off at 0.1 mg after a proper taper. Is it even possible to taper by 10% from 0.1 mg? Are the risks of having your nervous system knocked out of whack long-term greater than the risk of reinstating?

 

I keep replaying in mind how this could have been different. I could have seen a doctor or psychiatrist before starting the taper, but they probably would have suggested something comparable or worse. I thought I was being careful by using a protracted version of the taper suggest by my doctor years ago. I had come off before with a doctor's taper with no problem. Now I know about the kindling effect. I feel so foolish, but at the same time I feel there's no way this could have been prevented unless I had heard of this website before tapering. I had to google long-term ssri discontinuation symptoms to discover that this is even possible. I feel like I've ruined my life.

 

I apologize if I am repeating myself. I know the contributors here are used to dealing with people who are in a bad place and aren't thinking clearly, and my intention is certainly not to frustrate anyone. I am just looking for any guidance or reinforcing words that I am on the right path. I hope that my previous post provides evidence that I am taking responsibility for my situation and aren't expecting others to rescue me.

 

I am thinking about how half the world is under lockdown because of this pandemic. Meanwhile, during these hard times perfect strangers are devoting their free time to helping other perfect strangers on this website. I am so grateful for that. I hope that I can give back some day if I get through this.

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Mars15

Can anyone address my questions here?

 

On 3/28/2020 at 10:33 PM, Mars15 said:

My mind keeps toying with the idea of reinstating. I know I've probably received all the advice you have to offer about that, and I understand only I can make that decision, but I just feel so lost. If I did reinstate using 0.1 mg I suppose the 10% taper would be even more difficult than normal because I hear it gets more difficult at low doses. So I would possibly even need to reduce by less than 10% and I would be working with such small doses that I would probably need to dilute the solution heavily. This just seems so intractible. I've heard of people jumping off at 0.1 mg after a proper taper. Is it even possible to taper by 10% from 0.1 mg? Are the risks of having your nervous system knocked out of whack long-term greater than the risk of reinstating?


I was seriously considering reinstating, but brassmonkey's advice kind of scared me. Is there really that big a risk at such as small dose? I'm in for the long haul at this point anyway, so if the odds are good the added stability to the nervous system would be worth it right? If the recovery is long-term, the low-dose reinstatement doesn't seem like that much of a risk, because any setback would just be added to an already long-term recovery. The time spent stabilizing and then tapering would be time spent recovering anyway, possibly with greater suffering. The main problem here is the small risk of adverse reaction at that small dose, correct?

 

I know decision is mine, but does the above reasoning of the risks vs. benefits seem valid? Am I at least understanding the risks of reinstating vs. not reinstating clearly?

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manymoretodays

Hey Mars15,

I think it's up to you.  Good points by brassmonkey really.  Not meant to scare you.

I do see that you had gone on and off Lexapro a couple of times, before the fast taper to off in December 2019.  And sometimes, that can set ones nervous system up for kindling. 

 

And yes, the 0.1 dose you are considering reinstating, is nice and low, and if things went South, or you got worse, you could just quit the reinstatement. 

I think the first post, in the reinstatement topic, covers the risk factor pretty well........the humpty dumpty analogy, and then there is a paragraph at the end of the first post too. 

And so......if you are doing "well enough" now, and only you can really be the one that determines that, then if I were you, and I was "well enough".......I wouldn't reinstate.

Sometimes though, it can be pretty miraculous, a small reinstatement too.  I mean I've seen that, in my time here.

 

We've got that antibiotic reaction to consider with you too.  That might just take time to recover from.  And I don't know, or have no way of knowing, if your increased symptoms were specific to the ABX, or delayed WD.

 

Me, I was a mess, completely non-functional, after a too quick taper.......and only wish, I had known, or some provider had known, to try a wee reinstatement, way back when I presented to them, barely able to put words together.  By the time I got here, I had a hospitalization, and then remedication with different meds/drugs, and was at least 6 months out from my ill fated coming off Lexapro.  So that's part of my more recent story.  I had a long history of drugs/medications and diagnonsense.

 

And it sounds like, you are, right now, in one of those more challenging life situations..........graduation from college?  And the uncertainty of the "rest of your life", as well.

 

We haven't gotten into too much with you, as far as non-drug coping goes either.  Sometimes, this huge opportunity arises, in the form of WDsyndrome, in which we do GET to learn and try new ways of coping with life.  Not to undermine, the stark severity of WD syndrome at all.  I mean I lived through it, and it can be intense, acutely.  As I began to learn and grow into trying new non-drug coping skills though.......it did get better.  And it has continued to.

 

Symptoms and Self Care forum

^ you'll find most of the non drug coping there, and happy to direct you as well, as far as finding good stuff to deal with certain symptoms

And you should, get familiar with the other forums too, when you get a chance to.  So much good stuff here, helpful stuff.......got me through some tough times.

 

Oh Mars, I hope that helps.  And it does get better......always, or at least I think so.  I know that I probably did not touch on all your points, and apologies.  Good luck too, with final exams, and graduation!  That's exciting.

 

L, P, H, and G,

mmt

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