charlieboy: Cipralex / escitalopram / Lexapro since 13 yrs old now 26 years old. Tapering and hope

[charlieboy]

• My daughter started her psychiatric drug journey at 13 years old, being diagnosed with OCD and GAD, which ultimately led her to a prescription for Cipralex ( Escitalopram ).

  After 10 years  on Cipralex, at a max of 40 mg, in November 2016, she began 10% cut and hold taper using a compounding pharmacy. There were many months she did not make a cut but instead  held steady until she felt stabilized. But in general she held and cut at 10%. She was feeling so much better up until she got to 15mg. That is when the tapering became very challenging, but continued on the journey of cutting and holding. I only understand now that the cuts were way  too big for her even at that slow pace. 

  In October  2019,  finally at 5mg, we made a massive mistake and went from 5mg to 4mg. She experienced mental Akathisia, terror, severe doom, could not function. Severe fatigue and mental fog. She moved in with me.

  In November 2019, a month to the day of that detrimental cut, we reinstated to 5mg and she has remained at that dose until today.

  Over the past two years her waves are less frequent and shorter in duration. Her windows are therefore longer. When in a window she tries to keep her brain stimulated as we are big believers in neuroplasticity. Like others in WD, she falls asleep at night for a few hours, then up all night, falls asleep in the early morning and wakes up in the afternoon. She can awake with a wave of terror. She eats and the fatigue and brain fog set in. Impossible to work. She tries to walk outside everyday for 15 minutes. It is hard to connect with people / as she never knows how she will feel. She is an artist and during windows immerses herself in her craft.   She eats a very clean diet. We keep her stress level low. 

  It has been two years and she still doesn’t feel stabilized enough to continue the taper. 

  She is terrified of taking the vaccine in case it brings on further problems.

  We are trying to stay positive. Will she get better? Will she be able to continue her taper? Will her brain recover? Is it  possible we have waited too long to taper?

Edited October 10, 2021 by DataGuy
Editing out identifying info

[DataGuy]

Hi @charlieboy, 

 

Sorry for the wait, and for what happened to your daughter. I hope we can help her.

 

I'm going to ask you a few questions just to clarify things.

 

Can you tell me how quickly you were tapering the Cipralex? How often were you making the 1-10% cuts?

Your daughter has been holding for around 2 years now? Has she had any improvement?

 

I assume she vapes tobacco? One thing that can occur with long term psychiatric drug use is receptor up or downregulation as a result of the medication changing the brain. There is a bit of evidence that nicotine can slow or prevent neuroadaptation from occurring after drug use. See for example: this study. That and the negative health effects is a fairly good reason to quit, although it'd be best to do so slowly, as quitting smoking can also produce quite substantial withdrawal symptoms. 

 

One thing I will say is that there is no need to restrict glutamate. Yes it's true that glutamate is an excitatory neurotransmitter, but it is also a precursor for GABA, the primary inhibitory neurotransmitter in the nervous system, and I don't think there is any proven benefit to restricting glutamate intake (would also be tough to do that given how ubiquitous it is in protein). 

 

Lastly, some drugs and supplements can interfere with metabolism and can also have psychotropic effects (antibiotics, steroids, some supplements, coffee, nicotine etc.). It would be very helpful if you could create a drug history in your signature like this one. This link will take you directly to the signature. Signatures generally look like this: 

 

Example:

2001–2002 paroxetine 
2003  citalopram 
2004  paroxetine
2008  paroxetine slow taper down to 2016 Aug off paroxetine
2016  citalopram May 20mg  Oct slow taper down
2018  citalopram 13 Feb 4.6mg 15 Mar 4.4mg 29 Apr 4.2mg

 

This will allow any moderator or member to quickly see your history and where you are in your taper, and thus be able to help more easily without too much reading (most people here are volunteers and don't necessarily have much time). Once you do this we can discuss what to do next. 

 

In the meantime, you might find some of these non drug coping techniques helpful to ease your symptoms. Hope your daughter starts feeling better soon : )

[charlieboy]

Dear DataGuy,

 

After  speaking to my daughter, to clarify: she would do a 10% cut on last dose. She would hold for a minimum of a month. Frequently she held for two months or longer, really wanting to feel stabilized. Her situation became challenging at 10mg, not 15mg as I had written.

I just discovered on the site, the concept of TACHYPHLAXIS...being in withdrawal while still taking a prescribed dose.  So She has tapered from 40mg to 5mg....has been holding for the two years ....she still is not stabilized to continue, still feels debilitated...yet I read tapering from tachyphylaxis is necessary. 

Your thoughts?

[DataGuy]

Thanks @charlieboy. That's helpful.

 

Here is a link to a bit of info on tachyphylaxis. I would tend to think she is still healing from withdrawal (wd) syndrome, rather than in tachyphylaxis. Although both may not be helped by updosing, in wd syndrome it is because the nervous system is sensitized from previous wd attempts, while in tachyphylaxis it is because the receptors are maximally downregulated. Withdrawal syndrome can persist for a very long time. We have had people experience it for many years, even a decade or a bit more. I do think it is necessary to taper during tachyphylaxis, but slow tapering in that scenario would not be expected to be quite as painful as attempting to taper through severe wd syndrome. In your daughter's case, I think if she has improved with the 2 year hold, she should continue to hold until she feels more stable.

 

One thing that would be useful to add to the signature is any supplements your daughter might be taking. I know previously you had mentioned avoiding glutamate. Anything like that which you consider a special intervention to help her would be useful to know. This way we can weed out the bad or unhelpful and keep the good. I think one of the biggest pitfalls in wd is doing things that hurt us like taking other drugs or supplements, rather than not doing things that help. Often people do things they think are helping but could actually be hurting as a result of a lack of proper medical guidance and evidence. Any non-psychotropic drugs or other drugs like the vaping is useful to know about too. 

[brassmonkey]

What is your definition of "stability"?

 

A symptom diary would be quite helpful. Dates, times, medication schedule, symptom, intensity, how long it lasted. In a simple bullet format.

 

The 10mg point is a tricky one for most of these drugs. Frequently we will see an uptick in symptoms at this point. It is then a bumpier ride the rest of the way down. There are a few easier patches and a few rougher patches, but they will vary by the individual.

 

Tachyphylaxis rarely happens during a taper, even with extended holds. It looks to me like she was getting sensitized to the reductions and the "mistake" triggered a crash. That would be the release of the buildup of all the unresolved healing from the taper. It sounds like she did a good job of managing her taper overall. However, even with the extra hold periods thrown in, reducing each month can be too fast for some people. Causing that build up of unresolved healing. Once there has been a crash it can take a very long time for the body to sort things out and get back on track. During that time there will be a lot of different symptoms that can easily be seen as tachyphylaxis.

 

We have had a lot of discussion about whether the COVID jab causes problems: https://www.survivingantidepressants.org/topic/22542-coronavirus-covid-19-covid-19-vaccine-psychiatric-drug-tapering-withdrawal/page/13/?tab=comments#comment-548724

 

 

I have seen very little evidence that it cause more than the "normal reactions" for people who are tapering.  

[charlieboy]

 

Thank you again for your generous time and help.

I have read through all the COVID comments. She wants to get the vaccine but is still scared of possible Akathisia. We will continue to discuss. 

My attempt to answer your questions:

-She has always taken her drug at the same time , for over a dozen years at 8:00pm.

-She is now taking 5 mg every night at 8:00pm.

-She never misses a dose

-no other meds

-As for stability;

-2006-2016

Your explanation of her unresolved healing makes perfect sense now as when she tapered from 40mg -5mg, although she  cut and held at her dose often, she obviously never really stabilized as she was in fact experiencing withdrawal symptoms the whole time. The problem was that she NEVER benefitted from the drug. As soon as she started taking it at 13 yrs old, she became increasingly anxious, experienced brain fog, DR/DP, extreme fatigue, weight gain, agitation and severe depression. Her life was a misery but her psychiatrist just kept saying she was treatment resistant and the poly drugging started.

 

Started tapering -2016

-when she started tapering, these same symptoms of taking the drug were part of the withdrawal  journey so we now understand that we  never had the opportunity to “know"  stability because  we were unaware of what normal felt like…...all we knew was misery. The adverse effects of the drug were the same as withdrawal symptoms. I hope I am making sense.

-the only symptom of her miserable life that began to change was her DEPRESSION. She begins to see light.

-as she continued the taper, the WD symptoms/adverse effects of the drug slowly became less intense, but still existed.

-still had fatigue, brain fog, DP/DR, agitation etc.

-her personality emerges. Finally can keep a simple part time job, self esteem develops, she is no longer under water, etc

-she has hope for the first time

-starts losing the drug weight

 

2019

She gets down to 5mg, holds for a few months. I am sorry I don’t have  those exact dates.

OCTOBER 10, 2019-   drops from 5mg to 4mg-BIG MISTAKE

NOVEMBER 9, 2019-  TERROR/ AKATHISIA -but we didn’t know what this was, lasts for hours and hours, our introduction to waves and windows. Comes to live with me.

NOVEMBER 11, 2019- REINSTATED 5mg and has remained to this day

NOVEMBER 9-22, 2019 -Terror/ AKATHISIA 10/10 intensity, hours at a time, no pattern

DECEMBER 9, 2019- DECEMBER 30, 2019-Terror/AKATHISIA- waves and windows 10/10 intensity

Glutamate free diet

 

2020

FEBRUARY - a few days of terror (10/10),  lasts a few hours, her intense symptoms of extreme fatigue, insomnia, brain fog, anxiety return, she is  easily overstimulated( light and sound), but DEPRESSION HAS LIFTED

 

2021

May-June-July- waves of terror, intense (7/10), lasts a few hours at a time

                         -PTSD because the terror retuned after so long

 

Presently;

Still on 5mg

Still lives with me

Depression has lifted

Brain fog less intense

Far less agitation

DR/DP still present 

Insomnia comes and goes

Easily over stimulated to light and sound

Anxiety /wave easily triggered if she thinks about her situation- we really try to focus on the now

PTSD- lives in total fear of AKATHISIA

Slowly adding foods to her diet, eats clean 

Lost all her drug weight

Walks outside for 10-15 minutes a day

Can sometimes manage to go for a car ride

Engages in her artwork as often as possible

Watches TV, journals

Vapes nicotine 

 

My original question was could she be in tolerance from the drug ? Experiencing these symptoms because she has been sitting at 5mg for so long. Is it the drug or is it WD still making her life difficult?

 

Thank you again.

 

[DataGuy]

Hi @charlieboy,

 

Thank you for the neat summary. Sounds like she is still recovering from the withdrawal, so I would suspect her symptoms are due to this and not the drug, for the most part. Her recovery pattern looks very normal. She should experience windows and waves of generally decreasing severity (measured over a very long time frame) as she moves forward. Her routine sounds as healthy as can be given the circumstances. Some things that might help or possibly improve things:

 

-Slowly discontinuing the vaping using a nicotine patch or gum so that you can control the dosage and taper. Seems like smoking may interfere with certain neurotransmitter receptor upregulation, especially GABA, as mentioned in the study linked above.

-You mentioned a brain fog setting in after eating. Some people experience this regardless of what food they eat, although some foods can be better than others. To help, you could always try a intermittent fasting regime. I don't mean eating less calories, but eating all the calories she needs in a smaller window of time, say 4-8 hours, and fasting the other 16-20. This can take some practice and experimentation, but it may afford her a more reliable window of clarity during the day to do art, speak with friends or family etc. The digestive system plays a large role in neurotransmitter production (especially serotonin) and gastrointestinal problems are a well known adverse effect of antidepressants and psychotropics in general. 

- meditation or deep breathing to relax can help, especially if someone is instructing or guiding her

- Good that she is getting some exercise. Might try to slowly increase this over weeks and months as she feels capable. Exercise can be a great way to discharge excess energy (and nervous system activity, and hence, symptoms). The intensity is not a big deal. 

-Cipralex is generally acknowledged to be a more activating antidepressant, so if she has problems with insomnia, excessive activation, anxiety etc at night, she may consider slowly moving the dosage to an earlier point in the day (example: moving the dose back one hour per day). However, if she has been taking the drug at night for years and this is working well for her, there is no need to change unless she feels it may help. Just a potential suggestion which may or may not improve things a bit.

 

Many other potential non-drug interventions that may help can be found in the non-drug coping strategies topic linked here.

 

I know it has been a difficult journey @charlieboy, but hope your daughter can slowly heal and get back to regular life with some patience and guidance from friends and family. There is little reason to think she can't. 

 

Questions or requests for help with particular problems are always welcome any time. 

 

Cheers, DG

 

 

[DataGuy]

One more thing: many adverse effects of the vaccine seem to be from the normal immune response and dose-related, as evidenced by the fact that adverse effects are much more common after the 2nd dose than the first. If she is nervous about COVID and the vaccine, she could always request a lower dosage of the vaccine. I believe they are approving the pediatric dosage soon and have already approved it in the US. It is something like 1/3 the adult dosage. If she had any reaction to this it would hopefully be pretty mild. I had very little reaction to the vaccines despite having had a wide variety of adverse reactions to medications, foods etc. Pleasantly surprising. 

 

Here is a bit more information on intermittent fasting. General description article on healthline and long, scientific review article on fasting as therapy for neurological disease. The evidence thus far is weak, but hopefully they will run some clinical trials soon that will give a better idea of the benefits and harms. I believe they are already employing a fasting regime in the NHS as a treatment for type 2 diabetes, so the harms shouldn't be *too* bad, but always best to be cautious.

Edited October 30, 2021 by DataGuy

[SeekingAnswers]

Hello @charlieboy, I just wanted to say hello and let you know that you are not alone in your situation. My son was on Celexa from age 13. He is 29 now and this summer did a 40mg - 0mg over about 6 weeks, and was completely off at the end of July. His psychiatrist told us there would be no WD symptoms. He has had such a hard time with the withdrawal symptoms and reinstated at 1mg about 18 days ago. I was hoping this reinstatement would help stabilize him but so far it hasn't. We are going through many of the same things you and your daughter are experiencing. Unfortunately we are so new to the experience that I can't offer any advice, but am here if you just need support and understanding. 

[charlieboy]

@DataGuyThank you once again for sharing your knowledge. I value your opinion that she is experiencing "normal" withdrawal.  I am relieved to hear her journey mirrors others.  This knowledge and community is key to the success of her healing. Even after all these years of withdrawal, the situation is still surreal.

We are discussing how she will slowly taper her nicotine, mostly gearing up mentally. Thank you for the link regarding smoking.

In addition, we will further research your suggestion for intermittent fasting. We have never thought of this before. She eats small  clean meals every 3-4 hours and drinks loads of water so we are on the right path. 

In addition, your thoughts on a pediatric dose of the vaccine  is very interesting and creative. You are correct that here in Canada it will soon be approved. I will look into this as well.  I will keep you posted. I  greatly appreciate your effort and compassion and hope that you are doing well on your own journey. 

[charlieboy]

@SeekingAnswers Thank you for reaching out to me. Your kind words and offer of support is much appreciated. I read your story and of course send all of that  right back to you. This situation we find ourselves in, like everyone else on this site is unbelievable and surreal except as Mothers  there is the added  torture to watch our children suffer from no fault of their own. I hope and pray your son can experience relief soon. Sending you and your family strength and solidarity.

[SeekingAnswers]

Thank you for your support and for praying for my son. I will pray for your daughter, too. Yes, it really is torture watching our children go through this. All we can do is take it one day at a time I guess . . . that seems to be my motto these days. Sending you and your family strength as well. 

[DataGuy]

On 10/30/2021 at 6:45 PM, charlieboy said:

@DataGuyThank you once again for sharing your knowledge. I value your opinion that she is experiencing "normal" withdrawal.  I am relieved to hear her journey mirrors others.  This knowledge and community is key to the success of her healing. Even after all these years of withdrawal, the situation is still surreal.

We are discussing how she will slowly taper her nicotine, mostly gearing up mentally. Thank you for the link regarding smoking.

In addition, we will further research your suggestion for intermittent fasting. We have never thought of this before. She eats small  clean meals every 3-4 hours and drinks loads of water so we are on the right path. 

In addition, your thoughts on a pediatric dose of the vaccine  is very interesting and creative. You are correct that here in Canada it will soon be approved. I will look into this as well.  I will keep you posted. I  greatly appreciate your effort and compassion and hope that you are doing well on your own journey. 

 

Ok, thanks @charlieboy. I appreciate being able to help, if I can. I agree, it is hard to believe because it is for the most part denied by the medical "authorities".

 

The only reason I suggested the intermittent fasting was because you had mentioned the "brain fog" setting in after eating. This has happened to me as well and I've found I can attain some clarity with fasting for 16 or so hours. Fasting has been a big part of our evolutionary history - no animal would have survived otherwise - so I don't think it is terribly risky and it may actually be important for health. I hope there is some rigorous testing of it even though there is a lack of financial incentive for that. 

 

Please keep in touch. Look forward to your daughter healing and getting back to normal life : )