PrayingForRestoration Trying To Get Back To Normal / Need Rx Sequence and Tapering Advice (and support)

[PrayingForRestoration]

New Member: A therapist/GP put me on Celexa in 2002 to help with occasional bouts of anger (not sadness). Then around 2014, my Celexa prescription transitioned to Lexapro/Escitalopram (20mg). This was my only prescription for many years as I was blessed with a healthy life until I decided near the beginning of 2020 to stop taking Escitalopram as I was feeling pretty good and wanted to be pharmaceutical free. Unlike myself, I didn't research the tapering process or ask for medical supervision. I took 20mg tablets when the headaches got bad. The times between headaches got further and further apart until I had not taken Escitalopram for about three-months. 

 

Then at the end of May or beginning June (2020), anxiety started to build more each day. At first I didn't understand it. Granted, this is when Covid hit and the world turned upside-down but I don't normally get too anxious about world problems. Then it hit me that this might be a reaction/withdrawal from Escitalopram. I restarted taking Escitalopram (20mg) and made a doctor's appointment. My recollection is that the anxiety was retreating for the few days I had gone back to it and I was still sleeping eight-plus hours each night. 

 

Upon my doctor's visit toward the beginning of June (2020), I told her that anxiety had kicked in a little but I was taking my Escitalopram again (I don't remember if I told her it was bringing down the anxiety). At this point she scrolled through an (Rx) app on her iPad and told me to stop taking Escitalopram and start Zoloft/Sertraline. Without questioning her I did as I was prescribed.

 

Shortly after starting Sertraline my brain went berserk - I was getting anywhere from zero to six-hours sleep, shakes, "twitches," throbbing headaches, screaming tinnitus, severe anxiety, hours of pacing inside the house and unable to take naps. I used to be a productive person then I became a hermit rarely leaving the house. 

 

When I contacted my doctor to tell her what was going on, she seemed to minimize the urgency (my pain and agony). Usually she would just double the dosage or put me on a different prescription or tell me "she's got this."  She had me take so many tests because she didn't believe it was mis-prescribing (her advice) causing the issue. She had me endure several blood tests, two CT scans (head and abdomen), a neurologist appointment (who did nothing but check if I could walk a straight line) and a hospital hosted overnight sleep study. This went on for almost five-months. I think all of the medicines can be seen somewhere on my profile.

 

At some point, it seemed she - my general practitioner/internest -  figured out that she had no idea what to do then recommended a psychiatrist to help with medicine management. He, the psychiatrist, told me stay on Escitalopram (20mg) and put me on Bupropion, Quetiapine and Lithium. At this point I'm taking four prescriptions. This is about the time my spouse found this site and learned I was not the only one going through this horrible experience. The notes and advice we found on this site seemed to make much more sense then what the doctors are/were saying or doing. 

 

At the moment, I am taking the following prescriptions:

1. Escitalopram (20mg), June 2002 - January 2020 (18-years), then back again August 2020,

2. Bupropion (300mg), Since October 2020,

3. Quetiapine (200mg), Since November 2020,

4. Lithium (300mg), Since November 2020, CURRENTLY TAPERING (down from 900mg).

 

I want to reduce my reliance on prescription(s) as much as possible. Note that I still have the aforementioned symptoms; although, I am getting a little more sleep with a prescription (Quetiapine), that I wish to quit taking. Large parts of most days I am basically non-functional and spend time in bed with a pillow on my head. 

 

My questions include:

1. In which order should the medications be tapered? The "app" on this site wasn't much help.

2. How quickly may the medications be tapered? I see that 10% per month is common advice. Is this true for all medicines regardless of time taking?

3. Based on a few write-ups on this site, it appears going back to Escitalopram - full dosage - is "kindling" the withdrawal symptoms.  So should I still slowly taper (10%) off of the Escitalopram or just get off of it quickly to stop the kindling?

4. Is there a doctor near me that has REALLY worked with someone in my predicament? My GP and Psychiatrist claimed to be experienced, but they weren't. Instead, they were experimenting with me and made it worse.

5. What should be my reaction if withdrawal or other symptoms begin - gut it out, restart the med(s) at a low dosage, high dosage, or other advice?

 

Thank you for reading my long message and for any help you can provide.

[Altostrata]

Welcome, @PrayingForRestoration

 

It sounds like your most troublesome current symptom is sleeplessness?

 

Why did you decide to go off lithium first? How are you tapering it? What time of day are you taking buproprion, and why are you taking it?

 

Doctor who know anything about tapering are few and far between. See 

 

 

[PrayingForRestoration]

Thank you for your reply, @Altostrata.

 

It's difficult for me to order my symptoms by most troublesome to least. At the beginning of the Escitalopram withdrawal, at least that's what I think it (withdrawal) was, sleep was the most troublesome. My spouse believes I am getting more sleep now; although, we're unsure how much of it is aided by Quetiapine/Seroquel. And I've gotten little to no relief from the other symptoms listed in the first message. And I forgot to mention other symptoms: loss of memory and vocabulary, inability to focus, hearing phantom noises, racing thoughts, OCD-like symptoms (never had this (OCD) before this mess), and probably more symptoms that I don't remember.

 

We (I and my spouse who I trust more than the doctors with whom I consult) decided to wean off Lithium first because I had only taken it for a few months, it didn't seem to be helping, and the psychologist "allowed" us to do so at our last visit/discussion because I said I wanted to wean off as much medicine as possible. Weaning off any medicine was not his recommendation. The psychiatrist is convinced I was/am suffering for "discontinuation syndrome with depression." Therefore, he's pushing (hard) ECT (Electric Convulsive Treatment) and TMS (Transcranial Magnetic Stimulation). Both "therapies" take many weeks, are very expensive and are not covered by my insurance as many/most psychiatrists in my area do not accept insurance.  

 

The psychiatrist said to drop the Lithium dosage by 300mg every week. I am weaning a little slower then the doctor's instructions based on reading recommendations on this site; however, it is still fast compared to the 10% per month rule as we thought being on it for only a few months would safely allow it. That said, I dropped Lithium from 900mg to 600mg and held for two-weeks. Then dropped Lithium from 600mg to 300mg and held for two-weeks. This is where I am right now. I think the plan after being on LIthium (300mg) for two-weeks, is to cut the Lithium pill in half after two-weeks so that I am taking 150mg for two-weeks, then off of it completely. 

 

I take the Bupropian in the morning with the Escitalopram. The psychiatrist prescribed the Bupropian as a "booster" to the Escitalopram. 

 

Yes, I had seen the "Recommended Doctors, Therapists and Clinics" forum but found no doctor close to me. Maybe I can find a doctor who will allow remote visits. If anyone knows of a doctor that really did help patients wean off these prescriptions, I'd be grateful to know his/her contact information. 

[Altostrata]

You went off sertraline in August, then it looks like you were taking drugs for sleep problems. Did any of them work?

 

When you reinstated 20mg escilatopram, did your sleep improve? What benefit have you seen from buproprion?

 

Do you feel any withdrawal after the lithium reductions?

 

On 2/16/2021 at 10:01 AM, PrayingForRestoration said:

The psychiatrist is convinced I was/am suffering for "discontinuation syndrome with depression." Therefore, he's pushing (hard) ECT (Electric Convulsive Treatment) and TMS (Transcranial Magnetic Stimulation).

 

^This is stupid.

 

[PrayingForRestoration]

No, my recollection is Amitryptyline and Trazadone did little to nothing to improve sleep. The sleep aid I'm on now, Quetiapine/Seroquel 200mg, seems to be helping but I'm unsure how much. 

 

No, my recollection is that my sleep did not improve going back onto Escitalopram. 

 

My spouse and I are not aware (don't see or "feel") of any benefit(s) of Bupropion.

 

I don't sense Lithium withdrawal but my brain/CNS are out of whack - screaming tinnitus, throbbing brain, etc. -  so perhaps there is a chance that I cannot distinguish withdrawal from the other symptoms. But, again, I don't sense Lithium withdrawal.

 

By the way, my psychiatrist told me this week that he is out of ideas to help me improve other than trying ECT, TMS and/or checking into an in-patient program at the Menninger Clinic in Houston. Remember I live in South Florida. 

[Altostrata]

On 2/20/2021 at 9:12 AM, PrayingForRestoration said:

I don't sense Lithium withdrawal.

 

No changes in your symptom pattern after you reduce lithium?

 

Did you get any distinct adverse effects when you introduced lithium?

 

Bupropion can cause tinnitus and sleeplessness. It's not a good drug for someone having trouble sleeping.

 

On 2/20/2021 at 9:12 AM, PrayingForRestoration said:

By the way, my psychiatrist told me this week that he is out of ideas to help me improve other than trying ECT, TMS and/or checking into an in-patient program at the Menninger Clinic in Houston. Remember I live in South Florida. 

 

Your psychiatrist is utterly clueless about adverse effects of drugs. If I were you, I would not keep this person on my payroll.

[PrayingForRestoration]

Much of the "brain throbbing" went away following the Lithium reduction. That said, my brain has been throbbing since the beginning; around May/June 2020, so I don't know Lithium's part in this given that I didn't start Lithium until I started seeing this psychiatrist around October 2020. Either today or tomorrow the plan is to reduce from 300mg (full pill) to 150mg (half-a-pill) and hold for about two-weeks. I don't know what the plan is two-weeks from now. Perhaps one option is to cut the 150mg (half-pill) in half to 75mg (quarter-pill). We're continuing to pray for no symptoms. 

 

No, I don't remember any adverse effects when introduced to Lithium in October 2020, which might help explain in part why the psychiatrist started with 300mg, then quickly increased to 600mg, then quickly (in my opinion) increased to 900mg. 

 

Yes, my spouse and I have lost confidence in this psychiatrist but the nearest recommended doctor on the list is about three-hours from home. 

[PrayingForRestoration]

@Altostrata: Today I reduced my Lithium intake from 150mg to 75mg (a quarter pill) after being on 150mg for two-weeks. My prayer is that I can taper off Lithium fairly quickly and safely as I've been on the Lithium (900mg at highest dosage) only for about four or five-months. Perhaps this is wishful thinking. That said, if withdrawal symptoms appear, is the advice to kick back up to the previous dosage (150mg) for a while? Or is there another recommendation?

 

Additionally, the new psychiatrist, who I don't plan to seek instruction from anymore, put me on Quetiapine/Seroquel and Bupropion in October, 2020. Is it also wishful thinking that because it's only been a few months that I've been on these prescriptions that I can taper these, too, at the same time even as I taper off Lithium? I ask because it concerns me that it may take months to years to taper off the first and/or second and/or third and/or prescription(s) if the 10% rule is applied but this will also significantly increase time on these prescriptions which would seem to cause a greater dependency on them and, thus, much longer to taper. Maybe the 10% rule could be applied to all of them at once so as to reduce dependency time and then tapering time. I've read the recommendation to taper off one drug at a time which definitely makes sense if the prescription has been used for quite some time (I have no idea where this time line is - months, years). Maybe there's information as to how quickly the brain becomes dependent on these prescriptions. For some reason, I have four to eight months on the brain, so I might already be in that dependency trap. 

 

Lastly, I think I've read where Magnesium, Omega-3 (fish oil) and B12/complex are recommended. Is this (taking these supplements) true for all people/scenarios? Thank you for your service.

[Crochet]

Hi Praying, 

 

I'm so sorry that you have been going through this.  I'm a fellow Lexapro-taker that got off the medication too quickly.  I hope that you find peace and healing in this community.

 

Take care,

 

Crochet

 

[PrayingForRestoration]

2 hours ago, PrayingForRestoration said:

For some reason, I have four to eight months on the brain, so I might already be in that dependency trap. 

 

I meant to write that I've read that the brain becomes dependent on meds after about four to eight weeks (not months) usage.

 

My spouse and people with whom I spend the most time have said that my personality is largely back. From their perspective I seem to be healing. But I still believe that I need to get off these meds. And I presume it won't be easy. 

 

Thank you for your service.

[Altostrata]

On 3/10/2021 at 12:33 PM, PrayingForRestoration said:

That said, if withdrawal symptoms appear, is the advice to kick back up to the previous dosage (150mg) for a while?

 

Yes. You are tapering rapidly, in a way we usually wouldn't do.

 

On 3/10/2021 at 12:33 PM, PrayingForRestoration said:

Is it also wishful thinking that because it's only been a few months that I've been on these prescriptions that I can taper these, too, at the same time even as I taper off Lithium?

 

Yes, it is wishful thinking that you can taper quickly off 3 drugs at the same time. We do not advise this. If you do this and it goes wrong, we don't have any way to put Humpty Dumpty back together again.

 

We recommend tapering only one drug at a time, to protect your nervous system. I'm sorry if this will take longer than you'd like. 

 

On 3/10/2021 at 12:33 PM, PrayingForRestoration said:

if the 10% rule is applied but this will also significantly increase time on these prescriptions which would seem to cause a greater dependency on them and, thus, much longer to taper.

 

No, you would taper according to your tolerance for dosage reductions. We don't have any way to assess degree of dependency. As you lower the dosage, your system should adjust and the effect of the drug should reduce.

 

On 3/10/2021 at 12:33 PM, PrayingForRestoration said:

Maybe there's information as to how quickly the brain becomes dependent on these prescriptions. For some reason, I have four to eight months on the brain, so I might already be in that dependency trap. 

 

The rule of thumb is risk of withdrawal increases after about 1 month on the drug.

[PrayingForRestoration]

Please forgive me if I'm posting incorrectly. If I am, please guide me to the correct page/method.

 

Are there any known in-patient clinics in/near South Florida that are expert at protracted withdrawal symptoms? I'm a little over three years in this cycle and I need more/better help. I am still experiencing insomnia, from which I need relief.  While perusing through all of the posts on this site can (sometimes) be helpful, I really would appreciate a single-source (page?) of helpful topical advice. Maybe I'm overlooking this resource. I would appreciate information on helpful doctors, clinics (out-patient or in-patient), supplements, routines, therapies, any advice.

[PrayingForRestoration]

For many months I got up to about 6+ hours of sleep, now I am back to about 3 hours of sleep. Is this unusual? Solutions? Any information?

[Catina7]

On 8/18/2023 at 7:41 AM, PrayingForRestoration said:

Please forgive me if I'm posting incorrectly. If I am, please guide me to the correct page/method.

 

Are there any known in-patient clinics in/near South Florida that are expert at protracted withdrawal symptoms? I'm a little over three years in this cycle and I need more/better help. I am still experiencing insomnia, from which I need relief.  While perusing through all of the posts on this site can (sometimes) be helpful, I really would appreciate a single-source (page?) of helpful topical advice. Maybe I'm overlooking this resource. I would appreciate information on helpful doctors, clinics (out-patient or in-patient), supplements, routines, therapies, any advice.

 

Hi @PrayingForRestoration,  Oh wouldn't it be nice if there were these in-patient clinics for PWS!  Maybe one day hopefully.  

 

It may take a bit of effort to read through the threads on here, but it's really where you're going to find the best information because the knowledge is coming directly from people who have gone through the withdrawal process themselves.  They've been in your shoes.  They know what works and what doesn't.  I highly recommend you continue to read through and do your research.  None of this is an easy ride, but I think there's plenty of information here to help you.

 

We're all here for you to help and support you through this process.

 

Warmly,

Catina ❤️

Edited August 31, 2023 by Catina7

[PrayingForRestoration]

For many months I got up to about 6+ hours of sleep per night, now I am back to about 3 hours of sleep (about a month, now). Is this unusual? Solutions? Any information?

 

Also, on these nights that I get between two and three hours sleep (asleep ~10:30 - awake ~12:45), is it better to try to function on this small amount of sleep or is it better to take something like Diphenhydramine to get more sleep? Please make (alternative) suggestions.

 

Lastly, has anybody been able to maintain a job while in these throes of withdrawal? I have days that I'm barely functional. I'm about 3.5 years into this journey after about 20 years on Escitalopram. I could use a little help, please.

[PrayingForRestoration]

@Altostrata I laid in bed last night from 10:00 to 1:00. I then took two diphenhydramine to get a few hours of sleep. My understanding is that we are discouraged to take drugs for sleep, even over-the-counter, but there have been some nights that I would've gotten zero hours sleep without them. At which point do we declare a medical emergency? Then what!?! I'm at a breaking point, guys! Please help!

 

I was on Escitalipram for about 20 years, went cold turkey, and have been on this journey for 3.5 years. Until about a month ago, I was getting about 6+ hours sleep for many months, then it went to about four-hours of sleep, then about two-hours of sleep, and now I'm about zero-hours of sleep without over-the-counter drugs. Please help!

[Altostrata]

On 9/2/2023 at 3:15 AM, PrayingForRestoration said:

For many months I got up to about 6+ hours of sleep per night, now I am back to about 3 hours of sleep (about a month, now). Is this unusual? Solutions? Any information?

 

Has anything changed that might affect your sleep? Have you accidentally missed any doses, taken only off-schedule, changed a dosage, or added a drug? Have you recently taken antibiotics or drunk alcohol? Stayed up very late to bingewatch or play games? Used your computer late at night?

[PrayingForRestoration]

Thank you for your reply.

 

Other than adding a B-complex vitamin in the mornings about a week ago, I have been extremely vigilant in my routine since this began 3.5 years ago.  This latest round of sleeplessness began about a month ago and is still getting worse. This past week I began working out (cardio/weight resistance) hard to help sleep, but my sleep time continues to decline. I'm exhausted but I cannot sleep now without at least two diphenhydramine and that is only for a short while. I don't know what else to do.

 

It's gotten bad enough that I've contacted an in-patient mental health facility as I'm out of ideas and I'm going berserk - depression, anxiety, some akathisia, etc. My concern, though, is that the facility will want to drug me up.

[PrayingForRestoration]

@Altostrata I'm into several consecutive days/nights getting two to three-hours sleep per night only with Diphenhydramine or Acetaminophen PM. I tried a generous amount of CBD Oil but it didn't seem to help. My heart is beating heavily, having visual problems and I wouldn't trust myself to drive a car right now. I've missed more work than I've attended lately.

 

Is this normal for someone 3.5 years into the journey? Is this a wave? Any explanation? Any advise? At what point does this get better? I'm running on fumes. At what point do I go to the hospital or mental facility? What then, given they'll want to give me drugs?

[Altostrata]

If I were you, I'd pause on the B vitamins, they could affect your sleep.

 

What is your sleep pattern?

 

What times o'clock do you take your drugs, with their dosages?

[PrayingForRestoration]

@Altostrata OK, I will pause the B-vitamins.

 

Up to about six-weeks ago, I'd go to bed at 10:00pm, fall asleep about 10:20 and wake between 4:00 and 5:00. Now I go to bed at 10:00pm, lay in bed awake to about 1:00, get up and take a couple of Diphenhydramine or Acetaminophen PM pills, which give me between 1.5 and 3.0 hours sleep.

 

I have not been on any drugs/pharmaceuticals/anti-depressants for over 1.5 years.

[Altostrata]

Suggest you try a very small amount of melatonin to initiate sleep. Take at nightfall and turn off all the lights. It will work for 2-3 hours. Keep bedroom cool and very dark. See 

 

 

Melatonin for sleep: Many people find it helpful

 

What is the sleep cycle?

 

Waking with panic or anxiety -- managing the morning cortisol spike

 

Tips to help sleep -- so many of us have that awful withdrawal insomnia

 

Path to Better Sleep FREE online for everyone from the US Veterans Administration

 

Music for self-care: Calms hyperalertness, anxiety, aids relaxation and sleep

 

White noise devices for sleep

 

TV or computer use in evening can disrupt sleep: Bright light signals the brain that it's daytime

[PrayingForRestoration]

I'm sorry that I did not mention that I've been taking Melatonin at night but it's giving nothing.

[Altostrata]

How much melatonin do you take and what is your method? Darkness is essential for melatonin action.

[PrayingForRestoration]

I take 5mg of Melatonin via pill a few minutes before bed time. This has been part of my routine for over a year and was working, when I was getting 6+ hours sleep per night, but not now. Also, until recently, I did not have to take Diphenhydramine to help sleep. Now I can't seem to get any sleep without it. I wear a sleeping mask and the room is dark and cool. To my knowledge, I follow the guidelines offered, not just for sleeping but for the day, too, such as walking, consuming little caffeine, sugar, etc. I don't drink alcoholic beverages at all. I changed nothing between the good sleep nights and now.

[Altostrata]

Ordinarily, an effective dose of melatonin is a lot less than 5mg. Less is not more when it comes to melatonin. Suggest you try 0.5mg, take at nightfall, relax and turn off the lights.

 

As you know, we're only peer support and unable to come up with any sure-fire fixes for any symptoms. Sometimes you just have to patiently cope while your nervous system settles down.

[PrayingForRestoration]

@Altostrata How may someone determine if they are suffering from Diphenhydramine paradox versus something else, such as a wave or anything else? I ask, because I've been getting about two-hours of sleep per night for many weeks taking Diphenhydramine, but is it the Diphenhydramine or a wave? And if Diphenhydramine, what may we use instead? Note that I've been using acetaminophen PM and Diphenhydramine off and on for several months and daily for several weeks. Have I hit the paradox? How do I know? I'm already using Melatonin and have implemented the other recommendations.

 

Also note that I now wake up at 2:00am consistently with a fast-beating heart (palpitations?). And I don't go back to sleep. Again, Diphenhydramine paradox or something else?

 

What would you do if you were me? I'm desperate. Please also let me know if there's anybody you trust that I may contact quickly if needed with these types of questions - i.e. direct email, phone number, etc. Thank you for your urgency.

[Altostrata]

On 9/19/2023 at 3:22 PM, PrayingForRestoration said:

Diphenhydramine paradox

 

You'll stay awake rather than sleepy.

 

On 9/19/2023 at 3:22 PM, PrayingForRestoration said:

Also note that I now wake up at 2:00am consistently with a fast-beating heart (palpitations?). And I don't go back to sleep.

 

Yes, this is a thing. See this post.

 

 

[PrayingForRestoration]

@Altostrata I'm coming up on about eight-weeks of almost no sleep per night after many months of having about six-hours of sleep and I am desperate. I see where some people have used CBD products with varied success. What has been your observation (recommendation) to using CBD products - oil, paste, etc.? I've also been offered full-fledged products for sleeping that I think includes THC. Thoughts? I'm not sure if this will impact recovery and/or cause other issues.

 

I'm barely functional throughout these days/weeks of almost no sleep.

 

Note that I already take recommended sleep aides - i.e. Melatonin, Magnesium Threonate, Theanine, etc.

 

I am desperate for advice, Altostrata, to help manage/survive this long stretch of insomnia. Advise please.

 

Lastly, what has been your observation with sleeplessness - one-time (cycle), multiple cycles (waves?); time between cycles/waves; intensity over time, etc. It seems that I get more discouraged each day I don't see porgress/recovery and/or seems to be getting worse Thank you for your time and patience.

[Altostrata]

This is a serious question: Have you tried playing very soft music while you're sleeping? This can keep you sleeping for longer at a time.

[PrayingForRestoration]

What is the known longest duration on an SSRI, then going cold turkey, then having a success story? I need this encouragement. I think every day how I was on an SSRI (Lexapro) for 18 years then simply decided to quit (cold turkey) even though I was getting along with it (life was good). Some days I wonder if I'm one of the few who won't heal. I'm 3.5 years into this journey with symptoms almost as bad when the PAWS began.

[Catina7]

I'm so sorry to hear about your suffering and your severe insomnia.  In looking at your drug signature, it looks like you've gone off a lot of drugs in a very short period of time.  Your poor brain and body are probably just trying to figure out how to work normally again.  Our brains have amazing capacities to "re-wire" themselves.  Although it feels like you'll never heal, know that healing IS taking place even though you may not feel it.  I hope the link below will give you some comfort and hope:  

 

[BigCat]

On 9/23/2023 at 12:26 AM, Altostrata said:

This is a serious question: Have you tried playing very soft music while you're sleeping? This can keep you sleeping for longer at a time.

I know many people who have music playing in the background, or a "not too interesting" audiobook.  There's a lot of folk use "brown noise"- I like gently falling rain of distant waves...  

[PrayingForRestoration]

@Altostrata I have been experiencing akathisia for several days now in the form of pacing. I am not taking drugs. What is the remedy? What am I to do? Is it passing until something else chemically happens? I'm not finding answers elsewhere.

[Altostrata]

What is your current sleep pattern?

 

What other symptoms do you have?

[PrayingForRestoration]

About two nights a week I sleep for about one-hour. About two nights per week I sleep for about two-hours. About two nights per week I sleep about three-hours. About one night per week I sleep for about four-hours.

 

Other Symptoms:

1. Severe tinnitus,

2. Throbbing brain,

3. Bouts of heavy heart beating followed by heavy chest,

4. Night sweats,

5. Depression,

6. Anxiety,

7. OCD.