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☼ LilBit: polypharmacy nightmare


LilBit

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Kev, you may be feeling the effect of the Depakote reductions. Please be patient.

 

It's possible the brain fog is from the diazepam and Seroquel, as is the depression.

 

Have you had liver and kidney function blood tests recently? Has subclinical pancreatitis been ruled out? Has your digestion improved? It looks like your weight has stabilized.

 

Did you ever an "auditory hallucination" before? See Nightmare While Awake? Sleep Paralysis, Hypnogogic Hallucinations, etc.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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Something feels terribly wrong.  I have been unusually depressed today and crying.  I feel like I am losing my mind and going crazy.  I feel like I am totally losing all cognition and short term memory barely exists.  Every part of my body feels tense and all I can think about is how I want this nightmare to end.  I am really trying to hang in there.  

 

Liver and kidney function were checked not too long ago and came back normal, but I am going to request more labs this coming month to check that as well as a1c, triglycerides, b vitamins, vitamin d and testosterone to see where I am at now.  My gastroenterologist ruled out subclinical pancreatitis and even referred me for a second opinion.  My digestion definitely seems to have improved. What worries me is that my weight has been stable for several months between 133-135 lbs, and yet I continue to see fat loss.  This and the insomnia concern me the most out of everything going on.  My eyes are sunken and the veins and muscles are very prominent in my hands, arms and legs, and I have lost fat in my buttocks.  I have high LDL and low HDL cholesterol, low Leptin levels,  and elevated blood sugar... all of these things seem to point to lipodystrophy, although I can’t get a diagnosis. I also now have increased tinnitus and i feel like my hearing is not as good, and have random muscle twitches throughout my body. I have an appointment with another endocrinologist in a couple of weeks and am having an EMG on Friday to rule out any neurodegenerative diseases.  I can’t help but feel there is some autoimmune aspect to this whole thing.

 

I’ve experienced auditory hypnagogic hallucinations a couple of times since this all started, it just frightened me because it’s been awhile.  I am not even sure how I would describe how I am feeling— brain fog, feeling frightened, I am constantly staring off into space and brief episodes of being catatonic— I feel like the Depakote and Seroquel are damaging my body and possibly even triggered the lipodystrophy, but who knows.  

 

Thank you very very much Alto for taking the time to read my posts and provide feedback and advice. I am trying my best to do what I can, I am slowly realizing I am not as strong of a person as I once thought I was.  I am in a really dark place now and am desperately trying everything I can to pull myself out of it.

Drug FREE as of October 2021!
Diazepam (Valium) started 20mg daily - July 6 2018 - finished taper June 2021
Quetiapine (Seroquel) started 50mg Aug 15, 2018 - finished taper October 2021
Depakote tapered from 1500mg Oct 2 2018 - 0mg as of Dec 7, 2019
Doxepin 10mg Aug 24 2018 - Aug 27 2018
Ambien CR 6.25mg Aug 3 2018 - Aug 10 2018
Trazodone 50mg Nov 7 2017 - Nov 21 2017, 50-100mg  Jul 16 - July19 2018, 100mg Aug 1 - Aug 2 2018
Eszopiclone 3mg nightly Jul 21 - Jul 30 2018
Lorazepam (Ativan) 2mg as needed (nightly) Jul 25 - Jul 30 2018 . 1mg daily Jul 21 - Jul 24 2018 . 1mg every other day Jul 12 - Jul 20 2018.
Temazepam (Restoril) 22.5 mg Nov 2016 - Nov 7 2017, started back Nov 21 2017  tapered down to 7.5mg over a week’s time Jul 13 - Jul 19 2018 then took 30mg on July 20 2018
Mirtazapine 7.5mg July 21 - Jul 25 2018
Paroxetine (Paxil) 10mg 5 days 20mg 2 days  Jun 28 - Jul 4 2018,   Effexor 37.5mg Jun 22 - Jun 28 2018   Lexapro 10mg Jun 14 - Jun 16 2018
Lithium Carbide 900mg Nov 2017 - Jun 27 2018
Klonopin 0.5mg May 21 - Jul 2 2018
Aripiprazole  (Abilify) 5mg Dec 2017 - May 24 2018, 2.5mg May 25 - Jun 6 2018
Latuda 40mg Oct 12 - Oct 24 2017
Lamotrigine (Lamictal) 150mg July 2017 - Oct 2017 tapered off by taking 50mg less every 3 days
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Hi LilBit, I was just reading some of the new posts I haven't read yet and came across yours. I felt the need to reach out to you and tell you a complete stranger cares and I will pray for you as soon as I finish typing this. Please hang in there and know many of us care. God bless you.

Early 1980s 2 mg. vallium prn; Mid-1990s Paxil and 2mg. vallium prn; Somewhere in there Buspar

Early 2000s Sertaline 50 mg. and .25mg Xanax prn 

2008 Sertaline 50 mg but Xanax was increased to .5mg 6 times a day 

2015 Sertaline increased to 100mg. 2 mg. vallium prn and Wellburtrin (only on a few days)

April 2016 Venlafaxine XR 225mg with 50 mg. Zolft  and 10 mg. Vallium 3 times a day as needed

Fall 2017 Venlafaxine upped to 300 mg - 5 mg. Vallium 3 times a day prn; Jan. 2018 Venlafaxine 225mg w/Vallium

April 2018 weaned  to 187.50mg, 150mg, 112.5 mg at 4 to 5 week intervals vallium 3 times a day prn

July 2018 112.5 mg ; July 2018 started SA's 10% guideline w/ 2.5 vallium prn; lost notes  dropped to 89 mg by 10/22; 89 mg 10/29; 10/6 86 mg, 10/13 83 mg; 10/20 - 11/2 updosed to 89mg; 11/3 86 mg; 11/17 80 mg. 11/24 77mg - 12/20 80mg 1/ 20 77 mg venlafaxine; 2/19 75 mg Ven  still taking vallium 2.5 mg morning, after and evening

Simvastatin 40mg. daily with supplements: Magnesium, Omega Fatty Oils, Vitamin D3, Turmeric, Magnesium, 25 mg. to 50 mg. diphendramine for sleep

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  • Administrator
2 hours ago, LilBit said:

I’ve experienced auditory hypnagogic hallucinations a couple of times since this all started, it just frightened me because it’s been awhile.

 

Please don't worry about this, it's very common, I've experienced it a few times myself.

 

It's possible you're feeling the effect of the Depakote reductions. You've gone off it fairly fast, but that might have helped your liver and kidney functions. This may have helped your weight stabilize, the lipid levels and other tests related to metabolism might slowly come into line.

 

In fact, you've done a remarkable job tapering Depakote, and you've been very brave throughout all of this. There has been a little improvement.

 

You may have a condition that's not related to the drugs. I'm not sure what it might be, but it seems you're doing a good job of seeing specialists. Hang in there, I know you're discouraged and you don't feel well -- but you used to feel worse!

 

4 hours of sleep is not a lot of sleep, it may not be enough sleep, but it's better than zero sleep. It seems to me your getting about 4-5 hours of sleep a night has become more consistent lately. Is that so?

 

It's always worried me that you take Seroquel and diazepam together. I am concerned that the combined effect paradoxically interferes with your sleep. How do you feel about this: Stop tapering Depakote for now, start moving Seroquel earlier in the evening by an hour each day until you're taking it about 7 p.m.?

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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Hang in there. Sending love.   You will get better

May 2018:  1 dropper liquid marajuana

june 2018. Trazadone ambien 10 mg

july 2018 seroquel 37 mg ambien 2.5mg lex 5

October 2018 taper seroquel added hydroxizine 25 mg

nov ambien taper lex taper 

dec 2018 off of lex off of phenibut

 

October 2018- added a lot of supplements.  night: 3mg melatonin Passion flower tincture valerian tincture lavender magnesium glycinate liquid gaba herbal blend Theanine 450 mg tryptophan 1.5 grams 

May 2019. Down to the following at night 

4-6 mg hydroxizine. 250 mg tryptophan (1/2 pill).75 mg melatonin pill .75 herbal blend pill magnesium citrate 

Feb 2020:Off all supplements and pills.

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On 5/1/2019 at 10:31 AM, Goosie said:

Hang in there. Sending love.   You will get better

 

Thank you Goosie, I sure can use it.  I hope we all get better from this suffering!

Drug FREE as of October 2021!
Diazepam (Valium) started 20mg daily - July 6 2018 - finished taper June 2021
Quetiapine (Seroquel) started 50mg Aug 15, 2018 - finished taper October 2021
Depakote tapered from 1500mg Oct 2 2018 - 0mg as of Dec 7, 2019
Doxepin 10mg Aug 24 2018 - Aug 27 2018
Ambien CR 6.25mg Aug 3 2018 - Aug 10 2018
Trazodone 50mg Nov 7 2017 - Nov 21 2017, 50-100mg  Jul 16 - July19 2018, 100mg Aug 1 - Aug 2 2018
Eszopiclone 3mg nightly Jul 21 - Jul 30 2018
Lorazepam (Ativan) 2mg as needed (nightly) Jul 25 - Jul 30 2018 . 1mg daily Jul 21 - Jul 24 2018 . 1mg every other day Jul 12 - Jul 20 2018.
Temazepam (Restoril) 22.5 mg Nov 2016 - Nov 7 2017, started back Nov 21 2017  tapered down to 7.5mg over a week’s time Jul 13 - Jul 19 2018 then took 30mg on July 20 2018
Mirtazapine 7.5mg July 21 - Jul 25 2018
Paroxetine (Paxil) 10mg 5 days 20mg 2 days  Jun 28 - Jul 4 2018,   Effexor 37.5mg Jun 22 - Jun 28 2018   Lexapro 10mg Jun 14 - Jun 16 2018
Lithium Carbide 900mg Nov 2017 - Jun 27 2018
Klonopin 0.5mg May 21 - Jul 2 2018
Aripiprazole  (Abilify) 5mg Dec 2017 - May 24 2018, 2.5mg May 25 - Jun 6 2018
Latuda 40mg Oct 12 - Oct 24 2017
Lamotrigine (Lamictal) 150mg July 2017 - Oct 2017 tapered off by taking 50mg less every 3 days
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On 5/1/2019 at 12:10 AM, Altostrata said:

It's possible you're feeling the effect of the Depakote reductions. You've gone off it fairly fast, but that might have helped your liver and kidney functions. This may have helped your weight stabilize, the lipid levels and other tests related to metabolism might slowly come into line.

 

I was thinking the taper has been fast and was afraid I would feel the effects of it.  I am just so afraid to stay on it because of the damage I know it is doing to me.  What is weird is my weight seems to be mostly stable, but I am losing fat in the face, arms, hands, feet, neck, legs, buttocks.... pretty much everywhere except my tummy and "love handles" (abdominal area), which seem to have gotten bigger.  This really concerns me and is why I am seeing another endocrinologist.

 

Quote

In fact, you've done a remarkable job tapering Depakote, and you've been very brave throughout all of this. There has been a little improvement.

 

Thank you Alto, I can certainly use any words of encouragement right now--this is the absolute most difficult thing I have ever been through in my life.

 

Quote

 

You may have a condition that's not related to the drugs. I'm not sure what it might be, but it seems you're doing a good job of seeing specialists. Hang in there, I know you're discouraged and you don't feel well -- but you used to feel worse!

 

4 hours of sleep is not a lot of sleep, it may not be enough sleep, but it's better than zero sleep. It seems to me your getting about 4-5 hours of sleep a night has become more consistent lately. Is that so?

 

 

My sleep has gotten worse recently.  Some nights I might get 4, but it has been 2-3 now.  On a rare night I might get 5.  I also have no appetite again for the past month or so.  I attribute a lot of my feeling unwell and a lot of the symptoms to the sleep deprivation.

 

 

Quote

 

It's always worried me that you take Seroquel and diazepam together. I am concerned that the combined effect paradoxically interferes with your sleep. How do you feel about this: Stop tapering Depakote for now, start moving Seroquel earlier in the evening by an hour each day until you're taking it about 7 p.m.?

 

I am so torn.... I really want to get off of the Depakote due to the liver and mitochondrial toxicity and ototoxicity, but at the same time I don't want to do it too quickly.  I also feel like this lipodystrophy-like syndrome I seem to be experiencing could be because of it.  I could put the taper on hold and  try changing the timing of the Seroquel for a week and see if that makes any difference in my sleep if you think that will help, what do you think?

Drug FREE as of October 2021!
Diazepam (Valium) started 20mg daily - July 6 2018 - finished taper June 2021
Quetiapine (Seroquel) started 50mg Aug 15, 2018 - finished taper October 2021
Depakote tapered from 1500mg Oct 2 2018 - 0mg as of Dec 7, 2019
Doxepin 10mg Aug 24 2018 - Aug 27 2018
Ambien CR 6.25mg Aug 3 2018 - Aug 10 2018
Trazodone 50mg Nov 7 2017 - Nov 21 2017, 50-100mg  Jul 16 - July19 2018, 100mg Aug 1 - Aug 2 2018
Eszopiclone 3mg nightly Jul 21 - Jul 30 2018
Lorazepam (Ativan) 2mg as needed (nightly) Jul 25 - Jul 30 2018 . 1mg daily Jul 21 - Jul 24 2018 . 1mg every other day Jul 12 - Jul 20 2018.
Temazepam (Restoril) 22.5 mg Nov 2016 - Nov 7 2017, started back Nov 21 2017  tapered down to 7.5mg over a week’s time Jul 13 - Jul 19 2018 then took 30mg on July 20 2018
Mirtazapine 7.5mg July 21 - Jul 25 2018
Paroxetine (Paxil) 10mg 5 days 20mg 2 days  Jun 28 - Jul 4 2018,   Effexor 37.5mg Jun 22 - Jun 28 2018   Lexapro 10mg Jun 14 - Jun 16 2018
Lithium Carbide 900mg Nov 2017 - Jun 27 2018
Klonopin 0.5mg May 21 - Jul 2 2018
Aripiprazole  (Abilify) 5mg Dec 2017 - May 24 2018, 2.5mg May 25 - Jun 6 2018
Latuda 40mg Oct 12 - Oct 24 2017
Lamotrigine (Lamictal) 150mg July 2017 - Oct 2017 tapered off by taking 50mg less every 3 days
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On 4/30/2019 at 10:23 PM, WantoffVen said:

Hi LilBit, I was just reading some of the new posts I haven't read yet and came across yours. I felt the need to reach out to you and tell you a complete stranger cares and I will pray for you as soon as I finish typing this. Please hang in there and know many of us care. God bless you.

 

Thank you so much. I really appreciate that.  I would never wish what I am going through on anyone, it is truly terrible.  I hate that we have to suffer like this.  I honestly fear for my life now and had no idea that taking prescription drugs at the advice of a professional would bring me to this point.  I have no idea what to do now except what I have been doing, follow the wonderful advice mods have given me here, and pray that eventually it will get better.  I will pray for you too.

Drug FREE as of October 2021!
Diazepam (Valium) started 20mg daily - July 6 2018 - finished taper June 2021
Quetiapine (Seroquel) started 50mg Aug 15, 2018 - finished taper October 2021
Depakote tapered from 1500mg Oct 2 2018 - 0mg as of Dec 7, 2019
Doxepin 10mg Aug 24 2018 - Aug 27 2018
Ambien CR 6.25mg Aug 3 2018 - Aug 10 2018
Trazodone 50mg Nov 7 2017 - Nov 21 2017, 50-100mg  Jul 16 - July19 2018, 100mg Aug 1 - Aug 2 2018
Eszopiclone 3mg nightly Jul 21 - Jul 30 2018
Lorazepam (Ativan) 2mg as needed (nightly) Jul 25 - Jul 30 2018 . 1mg daily Jul 21 - Jul 24 2018 . 1mg every other day Jul 12 - Jul 20 2018.
Temazepam (Restoril) 22.5 mg Nov 2016 - Nov 7 2017, started back Nov 21 2017  tapered down to 7.5mg over a week’s time Jul 13 - Jul 19 2018 then took 30mg on July 20 2018
Mirtazapine 7.5mg July 21 - Jul 25 2018
Paroxetine (Paxil) 10mg 5 days 20mg 2 days  Jun 28 - Jul 4 2018,   Effexor 37.5mg Jun 22 - Jun 28 2018   Lexapro 10mg Jun 14 - Jun 16 2018
Lithium Carbide 900mg Nov 2017 - Jun 27 2018
Klonopin 0.5mg May 21 - Jul 2 2018
Aripiprazole  (Abilify) 5mg Dec 2017 - May 24 2018, 2.5mg May 25 - Jun 6 2018
Latuda 40mg Oct 12 - Oct 24 2017
Lamotrigine (Lamictal) 150mg July 2017 - Oct 2017 tapered off by taking 50mg less every 3 days
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My dear SA family,

 

You all have helped me get through the past 9 months which has proven to be the most difficult time in my life.  I am very sorry to say that it looks like things are taking a turn for much worse.  Somehow following my EMG/NCS (test was positive so they want me to get an MRI of my neck) and biopsies taken by a dermatologist, I have all of a sudden dropped from 16% body fat to a whopping 7%.   I checked on 2 different scales to make sure it wasn’t a malfunction but something is seriously wrong.  I feel extremely weak and tired, and I can especially see the change in my face, limbs etc.  I have no idea where to go from here.  I look sickly, I feel like I have tried eveytning that everyone here has suggested, and no improvement at all.  I think I used to feel worse but in reality I think i just got used to feeling bad all of the time.  I am truly scared for my life now and I doubt conventional medicine will be able to figure it out.  It has led me on nothing more than a very expensive rabbit chase and nothing more has been figured out than it was a year ago, other than confirming that I am a victim of neurotoxicity and my brain and body have been damaged.  At this point, I don’t know if it is the sleep deprivation, WD or adverse reactions to current meds but I feel like I don’t have much time left.  People always tell me to think positive and carry on, and sometimes I wonder if the neuro-emotions and negativity have caused a self-fulfilling prophecy so to speak.  I want to thank each and every one of you who took the time to reply to posts and offer advice here.  I am trying to hang in there, but don’t know what is going to happen.

Drug FREE as of October 2021!
Diazepam (Valium) started 20mg daily - July 6 2018 - finished taper June 2021
Quetiapine (Seroquel) started 50mg Aug 15, 2018 - finished taper October 2021
Depakote tapered from 1500mg Oct 2 2018 - 0mg as of Dec 7, 2019
Doxepin 10mg Aug 24 2018 - Aug 27 2018
Ambien CR 6.25mg Aug 3 2018 - Aug 10 2018
Trazodone 50mg Nov 7 2017 - Nov 21 2017, 50-100mg  Jul 16 - July19 2018, 100mg Aug 1 - Aug 2 2018
Eszopiclone 3mg nightly Jul 21 - Jul 30 2018
Lorazepam (Ativan) 2mg as needed (nightly) Jul 25 - Jul 30 2018 . 1mg daily Jul 21 - Jul 24 2018 . 1mg every other day Jul 12 - Jul 20 2018.
Temazepam (Restoril) 22.5 mg Nov 2016 - Nov 7 2017, started back Nov 21 2017  tapered down to 7.5mg over a week’s time Jul 13 - Jul 19 2018 then took 30mg on July 20 2018
Mirtazapine 7.5mg July 21 - Jul 25 2018
Paroxetine (Paxil) 10mg 5 days 20mg 2 days  Jun 28 - Jul 4 2018,   Effexor 37.5mg Jun 22 - Jun 28 2018   Lexapro 10mg Jun 14 - Jun 16 2018
Lithium Carbide 900mg Nov 2017 - Jun 27 2018
Klonopin 0.5mg May 21 - Jul 2 2018
Aripiprazole  (Abilify) 5mg Dec 2017 - May 24 2018, 2.5mg May 25 - Jun 6 2018
Latuda 40mg Oct 12 - Oct 24 2017
Lamotrigine (Lamictal) 150mg July 2017 - Oct 2017 tapered off by taking 50mg less every 3 days
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I feel for you and see your relentless suffering.

2010-2018 sertralin, venlafaxin, cymbalta 120 mg, march bupropio, Lorazepam 4 to 0,5 mg qetiapine 200-400 mg Apr mirtazapin 30 - 45 mg, lo tapered, to 0; Apr switch to diazepam 3 mg; jun/jul 15mg, taper to approx. 4,5 mg, Aug: 200 to 400 mg q, 50 mg levomepromazine, m 45 to 30 mg; since tapered q 400-230 mg, m 30 to 15 mg, 1dez m to 16 mg, 4dez 250 mg q, 31. dec 200 mg q

March 1, 2019 - 200 mg quetiapine, 4,5 mg diazepam, 16 mg mirtazapine

March 3, 2019 - 200 mg quetiapine, 4,0 mg diazepam, 16 mg mirtazapine

March 4, 2019 - 200 mg quetiapine, 4,2 mg diazepam,16 mg mirtazapine, 

june 5, 2019 - 100 mg quetiapine, 3 mg Diazepam, 12,185 mg mirtazapine 

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Keep hangin in there.   You will heal in time.  You can do it.  

May 2018:  1 dropper liquid marajuana

june 2018. Trazadone ambien 10 mg

july 2018 seroquel 37 mg ambien 2.5mg lex 5

October 2018 taper seroquel added hydroxizine 25 mg

nov ambien taper lex taper 

dec 2018 off of lex off of phenibut

 

October 2018- added a lot of supplements.  night: 3mg melatonin Passion flower tincture valerian tincture lavender magnesium glycinate liquid gaba herbal blend Theanine 450 mg tryptophan 1.5 grams 

May 2019. Down to the following at night 

4-6 mg hydroxizine. 250 mg tryptophan (1/2 pill).75 mg melatonin pill .75 herbal blend pill magnesium citrate 

Feb 2020:Off all supplements and pills.

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  • Administrator

LilBit, you're very ill, we understand. Please know we love you and care for you. I know you're exhausted, hang in there.

 

You are a fighter on two fronts, with this yet-undiagnosed medical illness and possibly drug adverse effects.

 

All we can do is suggest taking the psychiatric drugs out of the equation so they're not contributing to your troubles.

 

On 5/2/2019 at 11:56 AM, LilBit said:

I could put the taper on hold and  try changing the timing of the Seroquel for a week and see if that makes any difference in my sleep if you think that will help, what do you think?

 

Yes, I would hold on the Depakote, you've reduced your drug burden from that substantially. If you are feeling withdrawal symptoms from that, you need to let your nervous system adjust to the lower dosage.

 

But Seroquel might also be contributing to the stress on your liver. If you gradually separate Seroquel from the diazepam by an hour each day, we might better be able to see if the Seroquel is doing anything helpful. You'll have to keep those notes, of course.

 

It could be that if your nervous system is not hit every night by the Seroquel and diazepam simultaneously, you will sleep better.

 

Then, I would gradually reduce the Seroquel. It's possible diazepam is enough for your sleep.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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  • Moderator Emeritus
7 hours ago, LilBit said:

Somehow following my EMG/NCS (test was positive so they want me to get an MRI of my neck) and biopsies taken by a dermatologist, I have all of a sudden dropped from 16% body fat to a whopping 7%.   I checked on 2 different scales to make sure it wasn’t a malfunction but something is seriously wrong.  

 

Lilbit,

 

I’m so sorry to hear how much you’re suffering. It is incredibly frustrating and scary when we’re unable to pinpoint what is causing our ill health. 

 

I trust that you are struggling with your overall weight and body composition, but please note that scales tend to be very inaccurate when it comes to measuring body fat. I would pay attention to your weight and little else in your current circumstance. How has your weight changed recently? 

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

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On 5/5/2019 at 8:11 PM, eymen23 said:

 

Lilbit,

 

I’m so sorry to hear how much you’re suffering. It is incredibly frustrating and scary when we’re unable to pinpoint what is causing our ill health. 

 

I trust that you are struggling with your overall weight and body composition, but please note that scales tend to be very inaccurate when it comes to measuring body fat. I would pay attention to your weight and little else in your current circumstance. How has your weight changed recently? 

 

Thank you very much.  My overall weight hasn't changed much, I am still weighing around 134 lbs.  For some reason here recently I am getting noticeably thinner and feel weaker with more fatigue, and have random muscle twitching.  This past Friday I saw a dermatologist and they noticed a couple of irregular looking moles, so they gave me Lidocaine to remove them so they could get a biopsy.  They wanted to give epinephrine with it at first and I refused, and ever since then I have felt terrible--crawling out of my skin terrible-- so I am wondering if I made a mistake.   Last night I barely slept thanks to shoulder pain on whatever side I was sleeping on and either feeling too hot or too cold.  I am also not tolerating CPAP therapy very well.  This is truly a nightmare! 

 

I have been moving up the timing of my Quetiapine dosage as you suggested Alto, and am now taking it at 7pm.  Should I keep going and move the timing even earlier?  I hope this helps.  If you think it is ok, I would like to maybe start reducing the Depakote again by Sunday, or do you think that is too soon?  

Drug FREE as of October 2021!
Diazepam (Valium) started 20mg daily - July 6 2018 - finished taper June 2021
Quetiapine (Seroquel) started 50mg Aug 15, 2018 - finished taper October 2021
Depakote tapered from 1500mg Oct 2 2018 - 0mg as of Dec 7, 2019
Doxepin 10mg Aug 24 2018 - Aug 27 2018
Ambien CR 6.25mg Aug 3 2018 - Aug 10 2018
Trazodone 50mg Nov 7 2017 - Nov 21 2017, 50-100mg  Jul 16 - July19 2018, 100mg Aug 1 - Aug 2 2018
Eszopiclone 3mg nightly Jul 21 - Jul 30 2018
Lorazepam (Ativan) 2mg as needed (nightly) Jul 25 - Jul 30 2018 . 1mg daily Jul 21 - Jul 24 2018 . 1mg every other day Jul 12 - Jul 20 2018.
Temazepam (Restoril) 22.5 mg Nov 2016 - Nov 7 2017, started back Nov 21 2017  tapered down to 7.5mg over a week’s time Jul 13 - Jul 19 2018 then took 30mg on July 20 2018
Mirtazapine 7.5mg July 21 - Jul 25 2018
Paroxetine (Paxil) 10mg 5 days 20mg 2 days  Jun 28 - Jul 4 2018,   Effexor 37.5mg Jun 22 - Jun 28 2018   Lexapro 10mg Jun 14 - Jun 16 2018
Lithium Carbide 900mg Nov 2017 - Jun 27 2018
Klonopin 0.5mg May 21 - Jul 2 2018
Aripiprazole  (Abilify) 5mg Dec 2017 - May 24 2018, 2.5mg May 25 - Jun 6 2018
Latuda 40mg Oct 12 - Oct 24 2017
Lamotrigine (Lamictal) 150mg July 2017 - Oct 2017 tapered off by taking 50mg less every 3 days
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Also I just wanted to add that today I am seeing a HUGE decline in my cognitive thinking.  This happens when my sleep is especially terrible and seems I never fully recover from it.  My memory is shot and thinking is very slowed.  I am praying for a miracle ☹️

Drug FREE as of October 2021!
Diazepam (Valium) started 20mg daily - July 6 2018 - finished taper June 2021
Quetiapine (Seroquel) started 50mg Aug 15, 2018 - finished taper October 2021
Depakote tapered from 1500mg Oct 2 2018 - 0mg as of Dec 7, 2019
Doxepin 10mg Aug 24 2018 - Aug 27 2018
Ambien CR 6.25mg Aug 3 2018 - Aug 10 2018
Trazodone 50mg Nov 7 2017 - Nov 21 2017, 50-100mg  Jul 16 - July19 2018, 100mg Aug 1 - Aug 2 2018
Eszopiclone 3mg nightly Jul 21 - Jul 30 2018
Lorazepam (Ativan) 2mg as needed (nightly) Jul 25 - Jul 30 2018 . 1mg daily Jul 21 - Jul 24 2018 . 1mg every other day Jul 12 - Jul 20 2018.
Temazepam (Restoril) 22.5 mg Nov 2016 - Nov 7 2017, started back Nov 21 2017  tapered down to 7.5mg over a week’s time Jul 13 - Jul 19 2018 then took 30mg on July 20 2018
Mirtazapine 7.5mg July 21 - Jul 25 2018
Paroxetine (Paxil) 10mg 5 days 20mg 2 days  Jun 28 - Jul 4 2018,   Effexor 37.5mg Jun 22 - Jun 28 2018   Lexapro 10mg Jun 14 - Jun 16 2018
Lithium Carbide 900mg Nov 2017 - Jun 27 2018
Klonopin 0.5mg May 21 - Jul 2 2018
Aripiprazole  (Abilify) 5mg Dec 2017 - May 24 2018, 2.5mg May 25 - Jun 6 2018
Latuda 40mg Oct 12 - Oct 24 2017
Lamotrigine (Lamictal) 150mg July 2017 - Oct 2017 tapered off by taking 50mg less every 3 days
Link to comment

Your memory will come back.   Hang in there

May 2018:  1 dropper liquid marajuana

june 2018. Trazadone ambien 10 mg

july 2018 seroquel 37 mg ambien 2.5mg lex 5

October 2018 taper seroquel added hydroxizine 25 mg

nov ambien taper lex taper 

dec 2018 off of lex off of phenibut

 

October 2018- added a lot of supplements.  night: 3mg melatonin Passion flower tincture valerian tincture lavender magnesium glycinate liquid gaba herbal blend Theanine 450 mg tryptophan 1.5 grams 

May 2019. Down to the following at night 

4-6 mg hydroxizine. 250 mg tryptophan (1/2 pill).75 mg melatonin pill .75 herbal blend pill magnesium citrate 

Feb 2020:Off all supplements and pills.

Link to comment
  • Mentor

I’m sorry to hear how much you’re suffering Lilbit. You’re fighting bravely and I’m sure that in time your insomnia will resolve. 

 

Sending you warmest good wishes,

 

Rich

 = medication taken now

2007 quetiapine to March 2019 200mg

2019 quetiapine March to present 225mg 

2007 citalopram to present 40mg 
2018 March Abilify 5mg  
2019 Abilify February rapid taper over 3 weeks from 5mg to off

2019 March Clonazepam as required, taken very occasionally, then taken 0.5mg for 2 days 28th and 29th March, now phased out

2019 1st April reinstated Abilify 0.5mg / day 

2018 to 2020 Liquid B12 2g twice daily (diagnosed B12 deficiency) 

2020 July reduced quetiapine to 200mg

2022 October began taper of Abilify
 

Link to comment

Thank you all!!  It is difficult to believe that the human body can withstand this much torture, I literally feel like I am dying and my body is deteriorating!  I am trying to hang in there.  I saw the new sleep specialist today and really liked her.  She reviewed my sleep studies and does not believe I should be on a CPAP if I can’t tolerate it since I only have very mild apnea.  She recommended I see my dentist for a dental appliance to treat the respiratory effort-related arousals as she called them.  She also recommended CBT-I and mentioned that drugs are not the answer which we already know, and that therapy is the best thing to help neuroplasticity and calm anxiety, and with the slow taper off of the drugs my sleep will hopefully improve.  I can see the huge toll the lack of sleep is taking on my health, I am just hoping at this point that it is reversible.  I wish I could show you guys what I looked like a year ago versus now.  My sleep was terrible last night (tried using the CPAP which I won’t be doing anymore) and I can barely function today.  I had to take my poor babies (pups) to the groomer to get bathed and their nails trimmed because they were overdue— I don’t think I should be driving though! 

Drug FREE as of October 2021!
Diazepam (Valium) started 20mg daily - July 6 2018 - finished taper June 2021
Quetiapine (Seroquel) started 50mg Aug 15, 2018 - finished taper October 2021
Depakote tapered from 1500mg Oct 2 2018 - 0mg as of Dec 7, 2019
Doxepin 10mg Aug 24 2018 - Aug 27 2018
Ambien CR 6.25mg Aug 3 2018 - Aug 10 2018
Trazodone 50mg Nov 7 2017 - Nov 21 2017, 50-100mg  Jul 16 - July19 2018, 100mg Aug 1 - Aug 2 2018
Eszopiclone 3mg nightly Jul 21 - Jul 30 2018
Lorazepam (Ativan) 2mg as needed (nightly) Jul 25 - Jul 30 2018 . 1mg daily Jul 21 - Jul 24 2018 . 1mg every other day Jul 12 - Jul 20 2018.
Temazepam (Restoril) 22.5 mg Nov 2016 - Nov 7 2017, started back Nov 21 2017  tapered down to 7.5mg over a week’s time Jul 13 - Jul 19 2018 then took 30mg on July 20 2018
Mirtazapine 7.5mg July 21 - Jul 25 2018
Paroxetine (Paxil) 10mg 5 days 20mg 2 days  Jun 28 - Jul 4 2018,   Effexor 37.5mg Jun 22 - Jun 28 2018   Lexapro 10mg Jun 14 - Jun 16 2018
Lithium Carbide 900mg Nov 2017 - Jun 27 2018
Klonopin 0.5mg May 21 - Jul 2 2018
Aripiprazole  (Abilify) 5mg Dec 2017 - May 24 2018, 2.5mg May 25 - Jun 6 2018
Latuda 40mg Oct 12 - Oct 24 2017
Lamotrigine (Lamictal) 150mg July 2017 - Oct 2017 tapered off by taking 50mg less every 3 days
Link to comment
  • Mentor

Lilbit,

 

that sounds like a positive meeting.

 

I have had problems with snoring, though not apnea, and I found this website very helpful. I used the on-line sleep test to find what was best for me.  https://britishsnoring.co.uk/

 

I hope you feel better soon.

 

best wishes

 

R

 

 

 

 = medication taken now

2007 quetiapine to March 2019 200mg

2019 quetiapine March to present 225mg 

2007 citalopram to present 40mg 
2018 March Abilify 5mg  
2019 Abilify February rapid taper over 3 weeks from 5mg to off

2019 March Clonazepam as required, taken very occasionally, then taken 0.5mg for 2 days 28th and 29th March, now phased out

2019 1st April reinstated Abilify 0.5mg / day 

2018 to 2020 Liquid B12 2g twice daily (diagnosed B12 deficiency) 

2020 July reduced quetiapine to 200mg

2022 October began taper of Abilify
 

Link to comment

Thanks RichT, I will definitely check it out!  I am always willing to try anything that will help (except for anymore drugs...lol)

Drug FREE as of October 2021!
Diazepam (Valium) started 20mg daily - July 6 2018 - finished taper June 2021
Quetiapine (Seroquel) started 50mg Aug 15, 2018 - finished taper October 2021
Depakote tapered from 1500mg Oct 2 2018 - 0mg as of Dec 7, 2019
Doxepin 10mg Aug 24 2018 - Aug 27 2018
Ambien CR 6.25mg Aug 3 2018 - Aug 10 2018
Trazodone 50mg Nov 7 2017 - Nov 21 2017, 50-100mg  Jul 16 - July19 2018, 100mg Aug 1 - Aug 2 2018
Eszopiclone 3mg nightly Jul 21 - Jul 30 2018
Lorazepam (Ativan) 2mg as needed (nightly) Jul 25 - Jul 30 2018 . 1mg daily Jul 21 - Jul 24 2018 . 1mg every other day Jul 12 - Jul 20 2018.
Temazepam (Restoril) 22.5 mg Nov 2016 - Nov 7 2017, started back Nov 21 2017  tapered down to 7.5mg over a week’s time Jul 13 - Jul 19 2018 then took 30mg on July 20 2018
Mirtazapine 7.5mg July 21 - Jul 25 2018
Paroxetine (Paxil) 10mg 5 days 20mg 2 days  Jun 28 - Jul 4 2018,   Effexor 37.5mg Jun 22 - Jun 28 2018   Lexapro 10mg Jun 14 - Jun 16 2018
Lithium Carbide 900mg Nov 2017 - Jun 27 2018
Klonopin 0.5mg May 21 - Jul 2 2018
Aripiprazole  (Abilify) 5mg Dec 2017 - May 24 2018, 2.5mg May 25 - Jun 6 2018
Latuda 40mg Oct 12 - Oct 24 2017
Lamotrigine (Lamictal) 150mg July 2017 - Oct 2017 tapered off by taking 50mg less every 3 days
Link to comment

Wow, I took the test and they recommended a mandibular advancement mouthpiece, just like the doctor I saw today recommended!  That makes me feel a little bit better.  I’m going to contact my dentist office tomorrow for an appointment.  I really desperately need to see some improvement with this insomnia soon.

Drug FREE as of October 2021!
Diazepam (Valium) started 20mg daily - July 6 2018 - finished taper June 2021
Quetiapine (Seroquel) started 50mg Aug 15, 2018 - finished taper October 2021
Depakote tapered from 1500mg Oct 2 2018 - 0mg as of Dec 7, 2019
Doxepin 10mg Aug 24 2018 - Aug 27 2018
Ambien CR 6.25mg Aug 3 2018 - Aug 10 2018
Trazodone 50mg Nov 7 2017 - Nov 21 2017, 50-100mg  Jul 16 - July19 2018, 100mg Aug 1 - Aug 2 2018
Eszopiclone 3mg nightly Jul 21 - Jul 30 2018
Lorazepam (Ativan) 2mg as needed (nightly) Jul 25 - Jul 30 2018 . 1mg daily Jul 21 - Jul 24 2018 . 1mg every other day Jul 12 - Jul 20 2018.
Temazepam (Restoril) 22.5 mg Nov 2016 - Nov 7 2017, started back Nov 21 2017  tapered down to 7.5mg over a week’s time Jul 13 - Jul 19 2018 then took 30mg on July 20 2018
Mirtazapine 7.5mg July 21 - Jul 25 2018
Paroxetine (Paxil) 10mg 5 days 20mg 2 days  Jun 28 - Jul 4 2018,   Effexor 37.5mg Jun 22 - Jun 28 2018   Lexapro 10mg Jun 14 - Jun 16 2018
Lithium Carbide 900mg Nov 2017 - Jun 27 2018
Klonopin 0.5mg May 21 - Jul 2 2018
Aripiprazole  (Abilify) 5mg Dec 2017 - May 24 2018, 2.5mg May 25 - Jun 6 2018
Latuda 40mg Oct 12 - Oct 24 2017
Lamotrigine (Lamictal) 150mg July 2017 - Oct 2017 tapered off by taking 50mg less every 3 days
Link to comment
  • Moderator Emeritus

That is good news.  The sleep specialist sounds awesome.  I'm crossing my fingers the mouthpiece thing is effective for you.

2001–2002 paroxetine

2003  citalopram

2004-2008  paroxetine (various failed tapers) 
2008  paroxetine slow taper down to

2016  Aug off paroxetine
2016  citalopram May 20mg  Oct 15mg … slow taper down
2018  citalopram 13 Feb 4.6mg 15 Mar 4.4mg 29 Apr 4.2mg 6 Jul 4.1mg 17 Aug 4.0mg  18 Nov 3.8mg
2019  15 Mar 3.6mg  21 May 3.4mg  26 Dec 3.2mg 

2020  19 Feb 3.0mg 19 Jul 2.9mg 16 Sep 2.8mg 25 Oct 2.7mg 23 Oct 2.6mg 24 Dec 2.5mg

2021   29 Aug 2.4mg   15 Nov 2.3mg

Link to comment

I hope it does too.  I did not sleep again but for maybe an hour or 2 last night.  I am trying to get past my health anxiety, but I am still very much worried about the deteriorating of my physical health and the wasting. It seems closely connected to my insomnia and if that doesn't improve I don't see how anything else will.

Drug FREE as of October 2021!
Diazepam (Valium) started 20mg daily - July 6 2018 - finished taper June 2021
Quetiapine (Seroquel) started 50mg Aug 15, 2018 - finished taper October 2021
Depakote tapered from 1500mg Oct 2 2018 - 0mg as of Dec 7, 2019
Doxepin 10mg Aug 24 2018 - Aug 27 2018
Ambien CR 6.25mg Aug 3 2018 - Aug 10 2018
Trazodone 50mg Nov 7 2017 - Nov 21 2017, 50-100mg  Jul 16 - July19 2018, 100mg Aug 1 - Aug 2 2018
Eszopiclone 3mg nightly Jul 21 - Jul 30 2018
Lorazepam (Ativan) 2mg as needed (nightly) Jul 25 - Jul 30 2018 . 1mg daily Jul 21 - Jul 24 2018 . 1mg every other day Jul 12 - Jul 20 2018.
Temazepam (Restoril) 22.5 mg Nov 2016 - Nov 7 2017, started back Nov 21 2017  tapered down to 7.5mg over a week’s time Jul 13 - Jul 19 2018 then took 30mg on July 20 2018
Mirtazapine 7.5mg July 21 - Jul 25 2018
Paroxetine (Paxil) 10mg 5 days 20mg 2 days  Jun 28 - Jul 4 2018,   Effexor 37.5mg Jun 22 - Jun 28 2018   Lexapro 10mg Jun 14 - Jun 16 2018
Lithium Carbide 900mg Nov 2017 - Jun 27 2018
Klonopin 0.5mg May 21 - Jul 2 2018
Aripiprazole  (Abilify) 5mg Dec 2017 - May 24 2018, 2.5mg May 25 - Jun 6 2018
Latuda 40mg Oct 12 - Oct 24 2017
Lamotrigine (Lamictal) 150mg July 2017 - Oct 2017 tapered off by taking 50mg less every 3 days
Link to comment
  • Administrator
On 5/7/2019 at 9:51 AM, LilBit said:

I have been moving up the timing of my Quetiapine dosage as you suggested Alto, and am now taking it at 7pm.  Should I keep going and move the timing even earlier?  I hope this helps.  If you think it is ok, I would like to maybe start reducing the Depakote again by Sunday, or do you think that is too soon?  

 

Have you had any symptom pattern change corresponding to the change in quetiapine schedule?

 

How do you feel after you take quetiapine at 7 p.m.? How many days have you been taking it at 7 p.m.?

 

How do you feel after you take diazepam a few hours later?

 

On 5/7/2019 at 2:16 PM, LilBit said:

Also I just wanted to add that today I am seeing a HUGE decline in my cognitive thinking.  This happens when my sleep is especially terrible and seems I never fully recover from it.  My memory is shot and thinking is very slowed.  I am praying for a miracle ☹️

 

What time of day did this occur?

 

LilBit, I'm hoping you'll be able to sleep better without the CPAP. Those machines can be annoying. Maybe this dental mouthpiece will do the trick and you can relax. Don't forget your breathing meditation.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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On 5/10/2019 at 7:13 PM, Altostrata said:

 

Have you had any symptom pattern change corresponding to the change in quetiapine schedule?

 

It seems like my sleep is getting worse and I am noticing more muscle twitching in my body.  I don’t know if it’s the change in timing or the lidocaine shots I had a week ago at the same time we started changing the timing.

 

Quote

 

How do you feel after you take quetiapine at 7 p.m.? How many days have you been taking it at 7 p.m.?

 

 

I feel slightly more brain fog.  It’s been 6 days now.

 

Quote

How do you feel after you take diazepam a few hours later?

 

Not it much different, maybe a little more tired and sleepy.

 

Quote

 

What time of day did this occur?

 

LilBit, I'm hoping you'll be able to sleep better without the CPAP. Those machines can be annoying. Maybe this dental mouthpiece will do the trick and you can relax. Don't forget your breathing meditation.

 

No specific time of day, it’s just a constant feeling.   I feel like things have gotten much worse this past week and can’t pinpoint why.  I am scared because I feel like I am deteriorating and have gotten to a point where my sleep is the worst it has been.   I can’t think, function, have no appetite, can’t hold a conversation, feel constantly depressed and anxious, muscle twitching, increased tinnitus, burning skin, fatigue.  Not sure how much longer I can go on like this.  There has to be something that can help. 

Drug FREE as of October 2021!
Diazepam (Valium) started 20mg daily - July 6 2018 - finished taper June 2021
Quetiapine (Seroquel) started 50mg Aug 15, 2018 - finished taper October 2021
Depakote tapered from 1500mg Oct 2 2018 - 0mg as of Dec 7, 2019
Doxepin 10mg Aug 24 2018 - Aug 27 2018
Ambien CR 6.25mg Aug 3 2018 - Aug 10 2018
Trazodone 50mg Nov 7 2017 - Nov 21 2017, 50-100mg  Jul 16 - July19 2018, 100mg Aug 1 - Aug 2 2018
Eszopiclone 3mg nightly Jul 21 - Jul 30 2018
Lorazepam (Ativan) 2mg as needed (nightly) Jul 25 - Jul 30 2018 . 1mg daily Jul 21 - Jul 24 2018 . 1mg every other day Jul 12 - Jul 20 2018.
Temazepam (Restoril) 22.5 mg Nov 2016 - Nov 7 2017, started back Nov 21 2017  tapered down to 7.5mg over a week’s time Jul 13 - Jul 19 2018 then took 30mg on July 20 2018
Mirtazapine 7.5mg July 21 - Jul 25 2018
Paroxetine (Paxil) 10mg 5 days 20mg 2 days  Jun 28 - Jul 4 2018,   Effexor 37.5mg Jun 22 - Jun 28 2018   Lexapro 10mg Jun 14 - Jun 16 2018
Lithium Carbide 900mg Nov 2017 - Jun 27 2018
Klonopin 0.5mg May 21 - Jul 2 2018
Aripiprazole  (Abilify) 5mg Dec 2017 - May 24 2018, 2.5mg May 25 - Jun 6 2018
Latuda 40mg Oct 12 - Oct 24 2017
Lamotrigine (Lamictal) 150mg July 2017 - Oct 2017 tapered off by taking 50mg less every 3 days
Link to comment

Is it possible the quetiapine is “pooping out” on me causing withdrawals even though I haven’t changed the dose?  I am getting desperate and feel like I am slowly dying and this is getting very serious.  In addition to being a member of survivingantidepressants, I am a member of a fatal insomnia group and neurotoxicity education group on Facebook and all seem to have similar thoughts.  It’s terrible how many people suffer like this but the inability to sleep is my main problem. 

Drug FREE as of October 2021!
Diazepam (Valium) started 20mg daily - July 6 2018 - finished taper June 2021
Quetiapine (Seroquel) started 50mg Aug 15, 2018 - finished taper October 2021
Depakote tapered from 1500mg Oct 2 2018 - 0mg as of Dec 7, 2019
Doxepin 10mg Aug 24 2018 - Aug 27 2018
Ambien CR 6.25mg Aug 3 2018 - Aug 10 2018
Trazodone 50mg Nov 7 2017 - Nov 21 2017, 50-100mg  Jul 16 - July19 2018, 100mg Aug 1 - Aug 2 2018
Eszopiclone 3mg nightly Jul 21 - Jul 30 2018
Lorazepam (Ativan) 2mg as needed (nightly) Jul 25 - Jul 30 2018 . 1mg daily Jul 21 - Jul 24 2018 . 1mg every other day Jul 12 - Jul 20 2018.
Temazepam (Restoril) 22.5 mg Nov 2016 - Nov 7 2017, started back Nov 21 2017  tapered down to 7.5mg over a week’s time Jul 13 - Jul 19 2018 then took 30mg on July 20 2018
Mirtazapine 7.5mg July 21 - Jul 25 2018
Paroxetine (Paxil) 10mg 5 days 20mg 2 days  Jun 28 - Jul 4 2018,   Effexor 37.5mg Jun 22 - Jun 28 2018   Lexapro 10mg Jun 14 - Jun 16 2018
Lithium Carbide 900mg Nov 2017 - Jun 27 2018
Klonopin 0.5mg May 21 - Jul 2 2018
Aripiprazole  (Abilify) 5mg Dec 2017 - May 24 2018, 2.5mg May 25 - Jun 6 2018
Latuda 40mg Oct 12 - Oct 24 2017
Lamotrigine (Lamictal) 150mg July 2017 - Oct 2017 tapered off by taking 50mg less every 3 days
Link to comment
  • Mentor
1 hour ago, LilBit said:

Is it possible the quetiapine is “pooping out” on me causing withdrawals even though I haven’t changed the dose?  I am getting desperate and feel like I am slowly dying and this is getting very serious.  In addition to being a member of survivingantidepressants, I am a member of a fatal insomnia group and neurotoxicity education group on Facebook and all seem to have similar thoughts.  It’s terrible how many people suffer like this but the inability to sleep is my main problem. 

 

Hi Lilbit,

 

I’m Sorry you’re suffering so much.

 

are you worrying that you might have fatal insomnia? It’s extremely extremely rare. I should keep away from that group, it will only make you more scared. You’re not dying!

 

I’m not an expert but I can’t find any evidence that quetiapine ‘poops out’. Mods will be able to advise.

 

R

 

 

 

 

 = medication taken now

2007 quetiapine to March 2019 200mg

2019 quetiapine March to present 225mg 

2007 citalopram to present 40mg 
2018 March Abilify 5mg  
2019 Abilify February rapid taper over 3 weeks from 5mg to off

2019 March Clonazepam as required, taken very occasionally, then taken 0.5mg for 2 days 28th and 29th March, now phased out

2019 1st April reinstated Abilify 0.5mg / day 

2018 to 2020 Liquid B12 2g twice daily (diagnosed B12 deficiency) 

2020 July reduced quetiapine to 200mg

2022 October began taper of Abilify
 

Link to comment

I don’t think I have fatal insomnia in the sense of the prion disease like FFI or SFI, but I think the lack of sleep is causing my deteriorating health as I continue to get worse.  It definitely can’t be good for me and I am not seeing any improvement.

Drug FREE as of October 2021!
Diazepam (Valium) started 20mg daily - July 6 2018 - finished taper June 2021
Quetiapine (Seroquel) started 50mg Aug 15, 2018 - finished taper October 2021
Depakote tapered from 1500mg Oct 2 2018 - 0mg as of Dec 7, 2019
Doxepin 10mg Aug 24 2018 - Aug 27 2018
Ambien CR 6.25mg Aug 3 2018 - Aug 10 2018
Trazodone 50mg Nov 7 2017 - Nov 21 2017, 50-100mg  Jul 16 - July19 2018, 100mg Aug 1 - Aug 2 2018
Eszopiclone 3mg nightly Jul 21 - Jul 30 2018
Lorazepam (Ativan) 2mg as needed (nightly) Jul 25 - Jul 30 2018 . 1mg daily Jul 21 - Jul 24 2018 . 1mg every other day Jul 12 - Jul 20 2018.
Temazepam (Restoril) 22.5 mg Nov 2016 - Nov 7 2017, started back Nov 21 2017  tapered down to 7.5mg over a week’s time Jul 13 - Jul 19 2018 then took 30mg on July 20 2018
Mirtazapine 7.5mg July 21 - Jul 25 2018
Paroxetine (Paxil) 10mg 5 days 20mg 2 days  Jun 28 - Jul 4 2018,   Effexor 37.5mg Jun 22 - Jun 28 2018   Lexapro 10mg Jun 14 - Jun 16 2018
Lithium Carbide 900mg Nov 2017 - Jun 27 2018
Klonopin 0.5mg May 21 - Jul 2 2018
Aripiprazole  (Abilify) 5mg Dec 2017 - May 24 2018, 2.5mg May 25 - Jun 6 2018
Latuda 40mg Oct 12 - Oct 24 2017
Lamotrigine (Lamictal) 150mg July 2017 - Oct 2017 tapered off by taking 50mg less every 3 days
Link to comment

May 3

 

2100 cal

 

8:30am  fruit and maple oatmeal with large orange juice (550 cal)

9:00am  25mg Depakote

12:50pm  chicken salad wrap on spinach tortilla with lettuce, tomato and mixed fruit with lemonade (650 cal)

8:40pm  20mg Quetiapine 

9:30pm  rotisserie chicken with broccoli and cauliflower with cup of milk (900 cal)

9:30pm  2mg diazepam

11:50pm  bedtime... used CPAP and got about 4 hours of sleep, got up at 6:30am.  Also using lavender essential oil to see if this helps.

 

 

May 4

 

134.2 lbs  22.9 BMI  6.5% fat and 68.2% water??

 

Feeling awful today with depression, anxiety, feeling stressed, loud ringing in the ears, skin burning (spent all morning/afternoon outdoors), random muscle twitches in leg/arm and uncomfortable feeling in the chest. 

 

2000 cal

 

7:30am  banana (100 cal)

8:00am  bacon egg and cheese bagel with orange juice (700 cal)

9:00am  25mg Depakote 

3:00pm  pot roast with rice (600 cal)

8:15pm  20mg Quetiapine 

9:00pm  2mg diazepam

9:00pm  chicken breast with mixed veggies and cup of milk (600 cal)

1:00am  fell asleep, woke 3 times, got 4 hours of sleep.  Got up at 7:45am.

 

 

May 5

 

134.3 lbs  22.9 BMI  6.5% fat

 

Feeling weak and tired with muscle soreness, probably a combination of my condition with the physical activity I did yesterday.  I was helping move equipment into a storage room and some of it was slightly heavy.

 

2780 cal

 

9:00am  25mg Depakote

9:30am  bacon egg and cheese bagel with orange juice (850 cal)

2:30pm  tingling in right leg

2:45pm  Santa Fe chicken sandwich with cup of milk (630 cal)

7:45pm  20mg Quetiapine 

8:30pm  Salmon and peas with cup of milk (1300 cal)

9:45pm  2mg diazepam

10:30pm  bedtime, woke 3 or 4 times, took CPAP mask off about halfway through the night and got about 5 hours of sleep. 

 

 

May 6

 

Woke up this morning feeling anxious with a ball of anxiety at the pit of my stomach.  Having trouble shaking the feeling.  Also body felt very warm in bed this morning.  Feeling depressed today.  Had to get out and run some errands despite feeling like crap so maybe that will help.

 

133.1 lbs  22.7 BMI  16% fat

 

2070 cal

 

10:00am  25mg Depakote

12:20pm  bowl of Cheerios with 2% milk and a banana (400 cal)

4:30pm  6 inch tuna sandwich on wheat bread with black olives, cucumbers and spinach with sun chips from Subway (700 cal)

7:00pm  20mg Quetiapine 

9:30pm  roasted turkey with dressing, mashed potatoes and spinach (970 cal)

10:00pm  2mg Diazepam 

10:45pm  bedtime, used lavender oil and CPAP.  Woke several times and took CPAP off halfway through the night.  Left shoulder started hurting because I was lying on that side and could not get comfortable because when AC was off I got too hot and when on I felt too cold.  Got maybe 2-3 hours of sleep.

 

 

May 7

 

Feel terrible today due to not sleeping much and also have a pain in my tummy almost right above my belly button.  I am starting to think I am having an adverse/neurotoxic reaction to the lidocaine they gave me on Friday.

 

134.4 lbs  16.8% fat  22.9 BMI

 

2100 cal

 

8:45am  2 sausage egg and cheese burritos with orange juice (800 cal)

9:00am  25mg Depakote

9:15am  sharp pain in middle of stomach/lower abdomen near navel

1:30pm  string bean chicken with brown rice (700 cal)

6:50pm  BS 123

7:00pm  20mg Quetiapine 

8:30pm  Turkey and pinto bean chimichangas (600 cal)

9:00pm  2mg diazepam

11:30pm  bedtime, woke once, woke up at 5:30 and laid in bed until around 7 and got up. Got between 4 and 5 hours of sleep.

 

 

May 8

 

Neck/upper back pain today especially when moving head up and down

 

134 lbs  15.7% fat  22.9 BMI

 

7:50am  BS 107

9:30am  25mg Depakote

11:00am  bowl of cereal and banana (400 cal)

2:30pm  Southwestern Eggrolls (800 cal)

4:00pm  nausea 

7:00pm  20mg Quetiapine 

8:00pm  sweet and sour chicken with white rice (800 cal)

9:00pm  2mg diazepam

11:30pm bedtime, woke several times and got about 3 hours of sleep, tried to use the CPAP.

 

 

May 9

 

134.4 lbs  15% fat  23 BMI

 

2000 cal

 

7:15am  BS 99

9:30am  25mg Depakote

12:00pm  bowl of cereal and banana (400 cal)

4:30pm  chicken teriyaki bowl with steamed rice (700 cal)

7:15pm  20mg Quetiapine 

8:00pm  spaghetti with mixed greens salad (900 cal)

9:00pm  2mg diazepam

12:00am  bedtime, did not use CPAP and tried mattress pad, covered window with kraft paper and used a lighter blanket.  Got cold during the night so had to use another blanket.  Got about 2-3 hours of sleep maybe.

 

May 10

 

133.4 lbs  16% fat  22.8 BMI

 

2300 cal

 

9:00am  sausage egg and cheese McMuffin with orange juice (800 cal)

9:00am  25mg Depakote

1:00pm  kale and quinoa salad with chicken from la Madeleine (800 cal)

7:30pm  20mg quetiapine

8:30pm  turkey sandwich with baked beans  (700 cal)

9:15pm  2mg diazepam

11:30pm  bedtime, woke a few times and got about 4 hours of sleep.

 

 

May 11

 

134 lbs  16% fat  22.9 BMI

 

2000 cal

 

9:00am  25mg Depakote

9:00am  BS 101, BP 122/82, Temp 97.8

9:20am  muscle twitching, anxiety

11:45am  health nut from Le peep with glass of orange juice (600 cal)

4:30pm  salmon with rice, broccoli and green beans (800 cal)

6:00pm  heavy brain fog

7:00pm  20mg Quetiapine 

9:15pm 2mg Diazepam

9:30pm  bacon and egg sandwich (600 cal)

12:30am finally got tired, went to bed and woke several times.  Again lots of muscle twitching and skin irritated all over.  This seems to be increasing as well as sleep worsening.  The app I use has not been picking up any snoring at all.  Got maybe an hour or 2 of sleep.  😔

Drug FREE as of October 2021!
Diazepam (Valium) started 20mg daily - July 6 2018 - finished taper June 2021
Quetiapine (Seroquel) started 50mg Aug 15, 2018 - finished taper October 2021
Depakote tapered from 1500mg Oct 2 2018 - 0mg as of Dec 7, 2019
Doxepin 10mg Aug 24 2018 - Aug 27 2018
Ambien CR 6.25mg Aug 3 2018 - Aug 10 2018
Trazodone 50mg Nov 7 2017 - Nov 21 2017, 50-100mg  Jul 16 - July19 2018, 100mg Aug 1 - Aug 2 2018
Eszopiclone 3mg nightly Jul 21 - Jul 30 2018
Lorazepam (Ativan) 2mg as needed (nightly) Jul 25 - Jul 30 2018 . 1mg daily Jul 21 - Jul 24 2018 . 1mg every other day Jul 12 - Jul 20 2018.
Temazepam (Restoril) 22.5 mg Nov 2016 - Nov 7 2017, started back Nov 21 2017  tapered down to 7.5mg over a week’s time Jul 13 - Jul 19 2018 then took 30mg on July 20 2018
Mirtazapine 7.5mg July 21 - Jul 25 2018
Paroxetine (Paxil) 10mg 5 days 20mg 2 days  Jun 28 - Jul 4 2018,   Effexor 37.5mg Jun 22 - Jun 28 2018   Lexapro 10mg Jun 14 - Jun 16 2018
Lithium Carbide 900mg Nov 2017 - Jun 27 2018
Klonopin 0.5mg May 21 - Jul 2 2018
Aripiprazole  (Abilify) 5mg Dec 2017 - May 24 2018, 2.5mg May 25 - Jun 6 2018
Latuda 40mg Oct 12 - Oct 24 2017
Lamotrigine (Lamictal) 150mg July 2017 - Oct 2017 tapered off by taking 50mg less every 3 days
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  • Administrator
7 hours ago, LilBit said:

I feel slightly more brain fog.  It’s been 6 days now.

 

When do you feel increased brain fog? All the time?

 

Where is the twitching, how often does it occur?

 

The diazepam now makes you more sleepy?

 

Hang in there, we all care about you.

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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2 hours ago, Altostrata said:

 

When do you feel increased brain fog? All the time?

 

Yep, it’s pretty constant.  Like I am always in a daze and I have this heavy feeling in my head.  I can’t focus on anything.

 

2 hours ago, Altostrata said:

 

Where is the twitching, how often does it occur?

 

Sometimes in in my legs, or an arm muscle, I have even noticed it in my back when it’s really bad.  It mainly happens when I am lying in bed or during periods of high anxiety, but sometimes it just randomly happens during the day.

 

2 hours ago, Altostrata said:

 

The diazepam now makes you more sleepy?

 

Hang in there, we all care about you.

 

 

Maybe I am noticing the effect more because I am not taking both meds at the same time but I am not sure.  I have always been terrible at observing my own reactions to meds, either everything is a side effect or nothing happens.  I think that is what got me in this mess and allowed a psychiatrist to polydrug me in the first place.

 

Thank you for caring about a somewhat stranger and taking the time to give advice!  Right now I have a combination of feeling drunk and feeling like I did when I first tried to quit smoking, combined with being exhausted.  

Drug FREE as of October 2021!
Diazepam (Valium) started 20mg daily - July 6 2018 - finished taper June 2021
Quetiapine (Seroquel) started 50mg Aug 15, 2018 - finished taper October 2021
Depakote tapered from 1500mg Oct 2 2018 - 0mg as of Dec 7, 2019
Doxepin 10mg Aug 24 2018 - Aug 27 2018
Ambien CR 6.25mg Aug 3 2018 - Aug 10 2018
Trazodone 50mg Nov 7 2017 - Nov 21 2017, 50-100mg  Jul 16 - July19 2018, 100mg Aug 1 - Aug 2 2018
Eszopiclone 3mg nightly Jul 21 - Jul 30 2018
Lorazepam (Ativan) 2mg as needed (nightly) Jul 25 - Jul 30 2018 . 1mg daily Jul 21 - Jul 24 2018 . 1mg every other day Jul 12 - Jul 20 2018.
Temazepam (Restoril) 22.5 mg Nov 2016 - Nov 7 2017, started back Nov 21 2017  tapered down to 7.5mg over a week’s time Jul 13 - Jul 19 2018 then took 30mg on July 20 2018
Mirtazapine 7.5mg July 21 - Jul 25 2018
Paroxetine (Paxil) 10mg 5 days 20mg 2 days  Jun 28 - Jul 4 2018,   Effexor 37.5mg Jun 22 - Jun 28 2018   Lexapro 10mg Jun 14 - Jun 16 2018
Lithium Carbide 900mg Nov 2017 - Jun 27 2018
Klonopin 0.5mg May 21 - Jul 2 2018
Aripiprazole  (Abilify) 5mg Dec 2017 - May 24 2018, 2.5mg May 25 - Jun 6 2018
Latuda 40mg Oct 12 - Oct 24 2017
Lamotrigine (Lamictal) 150mg July 2017 - Oct 2017 tapered off by taking 50mg less every 3 days
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Something just dawned on me.... what if this is akathisia??  I looked it up and feel like it describes how I am feeling... 😢

Drug FREE as of October 2021!
Diazepam (Valium) started 20mg daily - July 6 2018 - finished taper June 2021
Quetiapine (Seroquel) started 50mg Aug 15, 2018 - finished taper October 2021
Depakote tapered from 1500mg Oct 2 2018 - 0mg as of Dec 7, 2019
Doxepin 10mg Aug 24 2018 - Aug 27 2018
Ambien CR 6.25mg Aug 3 2018 - Aug 10 2018
Trazodone 50mg Nov 7 2017 - Nov 21 2017, 50-100mg  Jul 16 - July19 2018, 100mg Aug 1 - Aug 2 2018
Eszopiclone 3mg nightly Jul 21 - Jul 30 2018
Lorazepam (Ativan) 2mg as needed (nightly) Jul 25 - Jul 30 2018 . 1mg daily Jul 21 - Jul 24 2018 . 1mg every other day Jul 12 - Jul 20 2018.
Temazepam (Restoril) 22.5 mg Nov 2016 - Nov 7 2017, started back Nov 21 2017  tapered down to 7.5mg over a week’s time Jul 13 - Jul 19 2018 then took 30mg on July 20 2018
Mirtazapine 7.5mg July 21 - Jul 25 2018
Paroxetine (Paxil) 10mg 5 days 20mg 2 days  Jun 28 - Jul 4 2018,   Effexor 37.5mg Jun 22 - Jun 28 2018   Lexapro 10mg Jun 14 - Jun 16 2018
Lithium Carbide 900mg Nov 2017 - Jun 27 2018
Klonopin 0.5mg May 21 - Jul 2 2018
Aripiprazole  (Abilify) 5mg Dec 2017 - May 24 2018, 2.5mg May 25 - Jun 6 2018
Latuda 40mg Oct 12 - Oct 24 2017
Lamotrigine (Lamictal) 150mg July 2017 - Oct 2017 tapered off by taking 50mg less every 3 days
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Hey Lilbit,

Popping in to say hi and see how you are doing today? I am trying to not get overwhelmed by my cocktail and just remember it will take time.

xoxo

-D

2001- Klonopin 0.125 mg.  2011- increase to 1 mg.  2018- increase to 1.5 mg. Taper 2023-2024. Taper complete!

2010- Trials of SSRI's, several.

2011- Saphris 5 mg. CT. 6/2017- retry Saphris 5 mg sublingual, begin taper August 2020 10% taper with scale, and final taper liquid sublingual, August 2019- taper complete!

2011- Geodon 20 mg. Begin taper Sept 2019. 10% liquid taper. 2020: December-5 mg. 2021: Jan-4.5mg. (held Feb.for vacation). March-4mg. Apr-3.6mg. May-3.2mg. June-2.8mg. (Held July for vacation). Aug-2.4mg. Sept.- 2.2mg. Oct. 2mg. Dec 2022 - Taper complete!

2011- Gabapentin 300 mg to present- 2020. Increase 2023 to 400mg.

2014- Vyvanse 20 mg, 2020- Vyvanse 5 mg. Increase August 2022 20mg. CT (unavailable) 4/2023

2016- Lithium 300 mg, June 2016 - FT.

2017- Cogentin 0.5 mg. June-August 2019- off Cogentin.

2018- Lamictal 300mg. Holding

2021 - Hydroxyzine 30mg. Holding.

2014 Omeprazole 20 mg and holding, Omega 3's/fish oil, Magnesium

 

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On 5/13/2019 at 2:06 PM, DMV64 said:

Hey Lilbit,

Popping in to say hi and see how you are doing today? I am trying to not get overwhelmed by my cocktail and just remember it will take time.

xoxo

-D

 

Thank you for checking on me.  Not doing too well, having some depression and dark thoughts the past few days.  Still trouble sleeping and losing weight, down to 132 now.

Drug FREE as of October 2021!
Diazepam (Valium) started 20mg daily - July 6 2018 - finished taper June 2021
Quetiapine (Seroquel) started 50mg Aug 15, 2018 - finished taper October 2021
Depakote tapered from 1500mg Oct 2 2018 - 0mg as of Dec 7, 2019
Doxepin 10mg Aug 24 2018 - Aug 27 2018
Ambien CR 6.25mg Aug 3 2018 - Aug 10 2018
Trazodone 50mg Nov 7 2017 - Nov 21 2017, 50-100mg  Jul 16 - July19 2018, 100mg Aug 1 - Aug 2 2018
Eszopiclone 3mg nightly Jul 21 - Jul 30 2018
Lorazepam (Ativan) 2mg as needed (nightly) Jul 25 - Jul 30 2018 . 1mg daily Jul 21 - Jul 24 2018 . 1mg every other day Jul 12 - Jul 20 2018.
Temazepam (Restoril) 22.5 mg Nov 2016 - Nov 7 2017, started back Nov 21 2017  tapered down to 7.5mg over a week’s time Jul 13 - Jul 19 2018 then took 30mg on July 20 2018
Mirtazapine 7.5mg July 21 - Jul 25 2018
Paroxetine (Paxil) 10mg 5 days 20mg 2 days  Jun 28 - Jul 4 2018,   Effexor 37.5mg Jun 22 - Jun 28 2018   Lexapro 10mg Jun 14 - Jun 16 2018
Lithium Carbide 900mg Nov 2017 - Jun 27 2018
Klonopin 0.5mg May 21 - Jul 2 2018
Aripiprazole  (Abilify) 5mg Dec 2017 - May 24 2018, 2.5mg May 25 - Jun 6 2018
Latuda 40mg Oct 12 - Oct 24 2017
Lamotrigine (Lamictal) 150mg July 2017 - Oct 2017 tapered off by taking 50mg less every 3 days
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  • Administrator

While I know you feel awful, it doesn't sound like akathisia. You may be feeling some withdrawal from Depakote.

 

Here are pluses: Your liver and kidney enzymes cleared up. You don't have bowel movement problems any more. Your digestion is better. Perhaps it was the Depakote and tapering it is going in a good direction. Do you want to finally get off the last bit now? I'd still taper gradually, by maybe 5mg at a time.

 

It's very possible that your combination of Seroquel and diazepam are causing the brain fog. That you're feeling more effect from the diazepam indicates to me that Seroquel was fighting with it when you took them together. Reducing Seroquel would be next.

 

Of course we love you, you're a member of our community. That's what we're here for.

 

This is not medical advice. Discuss any decisions about your medical care with a knowledgeable medical practitioner.

"It has become appallingly obvious that our technology has surpassed our humanity." -- Albert Einstein

All postings © copyrighted.

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  • Moderator Emeritus
35 minutes ago, LilBit said:

 Still trouble sleeping and losing weight, down to 132 now.

 

LilBit, 

 

Of course without seeing you in person it is very difficult to make any definitive assessment but looking back through your log you were 137lbs in October last year.

 

A 5lb loss across that period would usually be seen as negligible, unless you were already considered to be very underweight. For example, I can lose 5lbs in a matter of days if I miss meals or become dehydrated. 

 

I have no doubt that something is going on with your health, but the weights you’re reporting don’t seem to be indicative of serious wasting or atrophy. 

 

I’m offering this not to trivialise how awful this has been for you, but to hopefully reassure you that your health might be holding out better than it seems right now. Especially when you consider Alto’s points above.

 

If you can continue to focus on eating as much as is feasible daily, I’m hopeful that any wasting or atrophy will be minimised. 

Edited by eymen23

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

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