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Emiiclare: Did I really have anything wrong?


emiiclare

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Hey guys!

 

I was diagnosed with autism (then eventually PDD nos), bipolar, GAD (generalized anxiety) and fibromyalgia. I have been on anti-depressants since I was 9 and stopped them almost a year ago at age 21. I was on sleeping pills from age 6-20. I also was on like 12 prescribed pain pills because my pain was so bad from age 17-21. I had bad withdrawls from everything (I got my doctor's guidance to safely taper). Turns out my fibro pain that caused me to be unable to barely walk for 4 years was being caused my Abilify pill. I now have no symptoms of any of these things I was diagnosed with. I took 7 years to finish high school because of my anxiety and agoraphobia. The pills seemed to make everything worse because without them I am now I'm full-time university which I never dreamed I could do. It's really hard for me because I wonder if all those years of suffering (especially with my pain and anxiety) were caused by the pills. Anyone have any experience with this?

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  • KarenB changed the title to Emiiclare: Did I really have anything wrong?
  • Moderator Emeritus

Oh Emiiclare,

 

Your post could just make me cry.  How are you doing these days?  Obviously able to cope with a fair bit, as you are at Uni.  How is everything else in your life - sleep, pains, anxiety etc?  Have the withdrawals stopped?

 

I don't have experience personally with being wrongly diagnosed as a child, but I have read plenty which suggests it happens far more often than it should.  Such negligent, criminal behaviour for those doctors to so badly over-prescribe. 

 

There is a book called Anatomy of an Epidemic by Robert Whitaker which does a great job of explaining the big picture of psychiatric drugs.  It'll probably make you sad, and angry, (it did for me), but in the end understanding why things have happened can help you to process a bit easier. 

 

I hope you feel less alone here at SA,

Karen

 

 

2010  Fluoxetine 20mg.  2011  Escitalopram 20mg.  2013 Tapered badly and destabilised CNS.  Effexor 150mg. 

2015 Begin using info at SurvivingAntidepressants.  Cut 10% - bad w/d 2 months, held 1 month. 

Micro-tapering: four weekly 0.4% cuts, hold 4 weeks (struggling with symptoms).

8 month hold.

2017 Micro-tapering: four weekly 1% cuts, hold 4 weeks (symptoms almost non-existent).

2020 Still micro-tapering. Just over 2/3 of the way off effexor. Minimal symptoms, - and sleeping well.
Supplements: Fish oil, vitamin C, iron, oat-straw tea, nettle tea.

2023 December - Now on 5 micro-beads Effexor. Minimal symptoms but much more time needed between drops. Symptoms begin to increase.

2024 April - Updosed to 6 microbeads - immediate increase in symptoms for 4 days. Decreased to 5 microbeads.

 'The possibility of renewal exists so long as life exists.'  Dr Gabor Mate.

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36 minutes ago, KarenB said:

Oh Emiiclare,

 

Your post could just make me cry.  How are you doing these days?  Obviously able to cope with a fair bit, as you are at Uni.  How is everything else in your life - sleep, pains, anxiety etc?  Have the withdrawals stopped?

 

I don't have experience personally with being wrongly diagnosed as a child, but I have read plenty which suggests it happens far more often than it should.  Such negligent, criminal behaviour for those doctors to so badly over-prescribe. 

 

There is a book called Anatomy of an Epidemic by Robert Whitaker which does a great job of explaining the big picture of psychiatric drugs.  It'll probably make you sad, and angry, (it did for me), but in the end understanding why things have happened can help you to process a bit easier. 

 

I hope you feel less alone here at SA,

Karen

 

 

Hi Karen!

 

Thanks so much for your reply. It is really helpful to have support from someone who understands. That book sounds great!

 

I am doing better than I ever have. I do think my anxiety was a valid diagnosis since Ive had it since I can remember. My mom told me the other day that I never acted "like a child." She said I always understood everything and noticed things she never even did. I think because of that I thought very differently and felt like an outcast. As a teen I had adult friends, including a brilliant scientist, that took me under their wings. Yet society saw it as something "wrong" and put my on meds that I'd beg my mom to take me off. They made me angry and agitated. I got horrible nightmares, sleep paralysis, weight gain and non-stop migraines. Everyone told my mom that I NEEDED them so I wasn't allowed to stop. It was awful. It makes me sad to think about what I went through (I moved out at 13 and have been on my own ever since) and that it was probably caused by the meds. Also that I was labelled with all these things that didn't define me. I just wanted to be myself. I just needed to vent sorry.

 

Anyway now I'm doing great. I have a good relationship with my parents for the first time, have a loving bf that really helped me though the worst withdrawls (anger, pain, brain zaps etc), a great dog and my anxiety has almost vanished in the past year. Since I've been off my meds, I haven't been depressed, felt any unwarranted physical pain, I have more energy (I cut out caffeine and I used to be on like 5 energy drinks a day), I am exercising daily and have lost weight, I eat healthier, I can think clearly and I can sleep with just guided meditations. I'm like a new person.

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  • Moderator Emeritus

Then, even after the sadness of what you've been through, I'm really happy for how well you are feeling now. 

 

Lately I have started working with my local doctor's clinic here in New Zealand, concerning the over-prescription and mis-management of psychiatric drugs.  One of the things we are looking at is finding non-drug pathways for teens who come to their doctor with anxiety etc.  Your story is a very timely and first-hand reminder of why it is so important for other pathways to be provided.

 

Thanks so much for sharing it with us.

 

Karen

2010  Fluoxetine 20mg.  2011  Escitalopram 20mg.  2013 Tapered badly and destabilised CNS.  Effexor 150mg. 

2015 Begin using info at SurvivingAntidepressants.  Cut 10% - bad w/d 2 months, held 1 month. 

Micro-tapering: four weekly 0.4% cuts, hold 4 weeks (struggling with symptoms).

8 month hold.

2017 Micro-tapering: four weekly 1% cuts, hold 4 weeks (symptoms almost non-existent).

2020 Still micro-tapering. Just over 2/3 of the way off effexor. Minimal symptoms, - and sleeping well.
Supplements: Fish oil, vitamin C, iron, oat-straw tea, nettle tea.

2023 December - Now on 5 micro-beads Effexor. Minimal symptoms but much more time needed between drops. Symptoms begin to increase.

2024 April - Updosed to 6 microbeads - immediate increase in symptoms for 4 days. Decreased to 5 microbeads.

 'The possibility of renewal exists so long as life exists.'  Dr Gabor Mate.

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Welcome to the forum.  What a lot of suffering you have gone through! -- but I am so very glad that you have got through it successfully and are now in university. Congratulations and may you have many successes in your academic life and beyond.
With very best wishes,

M.

200 Zoloft; 10 mg Zyprexa; 4 mg valium as of May 2021;  Valium taper: July 16: 3.5 valium; July 30: 3 mg (paused valium taper); Aug. 23: 2.5 mg
Zyprexa: July 26: 8.75 mg; Aug. 9: 7.5 mg; Aug. 30: 7.1 mg

-------
Dec 1, 2016. 10 mg zyprexa for 1.5 month. Started taper mid-Jan. 2017. Cut 1.25 mg every 2 weeks; smaller cuts 2.5 mg down. Stopped at .6 mg. May 7, 2017: zyprexa free. 
Zoloft: Dec1, 2016, 200 mg. Started taper: Jun12, 2017: 197.5 mg; Jun19,:195 mg; July 2:185mg; July 9,:180 mg; July16,: 175; July 23: 170; July 30: 165; Aug6: 160; Aug13: 155; Aug. 20: 150; Aug.27: 146 mg; Sept3: 145 mg; Sept10:143 mg; Sept17:140 mg....Nov5: 122 mg...Dec3:112.5 mg; Jan14, 2018: 95 mg...Jan28: 90 mg; Feb21:80 mg; Mar11: 75 mg; May2:70 mg; May15: 68 mg; May28: 65 mg; Jun9: 62 mg;Jun25: 60 mg:July22: 55 mg; Aug25: 45 mg. Aug28: 50 mg...Oct 28: 38 mg; Dec.4: 30 mg; Jan8,2019: 25mg; Feb6: 23.5 mg; Apr1:17.5mg; May1:1 mg; May 5: 18;  May 18:15mg; June 16:12.5mg; Sept 10:11 mg; Sept.16:10 mg; Oct. 1: 9mg; Nov. 27: 8mg; Dec.5: 7mg; Jan.1,2020, 6 mg; Feb1: 5 mg; May 1: 2.5 mg; Jn 1: 2 mg; Jy 1: 1.5 mg

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I am so glad that we're able to taper off all your meds!  How are you feeling now?

 

i have a little one who has high functioning autism and I will NEVER ever put him on any kind of medication.  If he needs some intervention it will definitely be addressed holistically (i.e. OT, therapy, social groups, modeling, etc.) 

 

i am going through a horrific WD and cannot imagine a child/teenager having to deal with all of this!

 

i am so proud that you were brace and smart enough to free yourself from these drugs.  You are truly a success story!

Mid 2014 - June 2016 (~ 2.5 yrs): sertraline 75mg. Under advice of my Pysch NP, weaned off in 1 month

Sept 2017 - Feb 2017 (6 months): Latuda (dose 20mg up to 80mg). Under advice of Psych NP, weaned off in 6 weeks (Jan - mid Feb). Tirtated down 20mg every 2 weeks.

Nov 2017 - Feb 2017 (3 months): lamictal 100mg. Abruptly taken off. This was the "wean": 100mg, 50mg, then off

Feb 2017: sertraline 150mg for 1 week to bring me out of a severe suicidal depression. Abruptly stopped due to serotonin syndrome. Tried to reinstate 50mg a week later, but the serotonin syndrome symptoms came back. Not possible to reinstate sertraline.

March 2017: remeron 7.5mg. Took one dose that knocked me out for two days. Refused to take it again

February 2017 - March 2017: Ativan 1mg. Took 5 pills total spread out over the course of 3 weeks. No longer taking it.

6/16/18 - 6/26: celexa 1.25mg

6/27/18 - 6/29: celexa 2.5mg, 6/29 had burning and agitation within 30min of dose

6/30/18 - present: celexa 1.25mg

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Dear Emi

How is your sleep quality now?

What about the nightmares,are they disappeared totally?

With what medication your sleep paralysis cured?

 

Cold turkeyed risperidone (1m.g)and trihexyphenidyl combination drug out of ignorance,In August 2016 after one month use.

Withdrawal symptoms settled at dreamful,disturbing sleep.

Thus introduced to olanzapine for sleep.Started using olanzapine out of ignorance.

Tapering olanzapine 10 m.g from February 2017.

May 2018 :Still suffering dreams,Still tapering olanzapine at 0.625.100ml water+2.5 mg olanzapine. June 2018 22.5ml=0.57mg.July 2018 20ml,August 2018-17.5ml,September 2018-15ml,October 2018 10 ml,December 2018 7 ml, BrassMonkey slide method so far at lower doses.2 nd December cold turkeyed , only to reach minure doses as reinstatement to cutshort endless tapering process.4rth December started 1ml.

Almost no symptoms and sleep is better,So started 0.5 ml from 17-12-2018.

"0"from31-12-18.Re birth happened from 10- 2020,as rejuvenation took whole2019.Completely recovered now.

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