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I just read this book about a woman who went pretty much psychotic turned out to be in a strange auto-immune reaction. It was gripping. She was initially misdiagnosed and told to stop "partying," but her condition was grave and the cause was very obscure.

It's called Brain on Fire, by Susan Cahalan.

http://www.amazon.com/dp/B007EDOKZW/ref=pe_385040_118058080_TE_M1T1DP

2009: Cancer hospital said I had adjustment disorder because I thought they were doing it wrong. Their headshrinker prescribed Effexor, and my life set on a new course. I didn't know what was ahead, like a passenger on Disneyland's Matterhorn, smiling and waving as it climbs...clink, clink, clink.

2010: Post surgical accidental Effexor discontinuation by nurses, masked by intravenous Dilaudid. (The car is balanced at the top of the track.) I get home, pop a Vicodin, and ...

Whooosh...down, down, down, down, down...goes the trajectory of my life, up goes my mood and tendency to think everything is a good idea.
2012: After the bipolar jig was up, now a walking bag of unrelated symptoms, I went crazy on Daytrana (the Ritalin skin patch by Noven), because ADHD was a perfect fit for a bag of unrelated symptoms. I was prescribed Effexor for the nervousness of it, and things got neurological. An EEG showed enough activity to warrant an epilepsy diagnosis rather than non-epileptic ("psychogenic") seizures.

:o 2013-2014: Quit everything and got worse. I probably went through DAWS: dopamine agonist withdrawal syndrome. I drank to not feel, but I felt a lot: dread, fear, regret, grief: an utter sense of total loss of everything worth breathing about, for almost two years.

I was not suicidal but I wanted to be dead, at least dead to the experience of my own brain and body.

2015: I  began to recover after adding virgin coconut oil and organic grass-fed fed butter to a cup of instant coffee in the morning.

I did it hoping for mental acuity and better memory. After ten days of that, I was much better, mood-wise. Approximately neutral.

And, I experienced drowsiness. I could sleep. Not exactly happy, I did 30 days on Wellbutrin, because it had done me no harm in the past. 

I don't have the DAWS mood or state of mind. It never feel like doing anything if it means standing up.

In fact, I don't especially like moving. I'm a brain with a beanbag body.   :unsure:

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Its very good, i recommend. Interesting story.

in 2002- 0,5 tablet cipramil for half a year, ended it uneventfully. in 2006 - citalopram for half a year, ended in horrific state, ditched the drugs CT. 2007-2008 not feeling well but drug free. in 2008 prozac 20mg + quetiapine 25mg. 2009 tried to stop, ended up in hole after couple of months, started zoloft. 2009-2011 zoloft 50mg. went to 25mg in 2011 summer, it resulted in half a year horrible suffering. reinstated, changed drugs, nothing happened. by 2012 beginning suddenly felt great and CT meds. after 4 months came suddenly most horrible human suffering that's possible. was started on prozac and questiapine. started tapering slowly, GFCF diet and Hardy Nutritionals vitamins in 2013 summer. 

current medications: 1) fluoxetine and quetiapine since Aug 2012; 2) Daily Essential Nutrients by Hardy Nutritionals 7 capsules / since May 2013 + omega3; 3) Gluten-free-casein-free diet since june 2013

Started withdrawing slowly since april 2013. Mostly around 10% cuts. 

April'13 - March'14: fluoxetine 40mg -> 19,5mg; quetiapine 50mg -> 40mg
April'14-March'15: fluoxetine 19,5mg -> 14,4mg; quetiapine 40mg -> 22mg

April'15-March'16: fluoxetine 14,4mg -> 7,4mg; quetiapine 22mg -> 15mg

April'16-March'17: fluoxetine 7,4mg -> 5,0mg; quetiapine 15mg -> 7,25mg

April'17-March'18: fluoxetine 5,0mg -> 4,0mg; quetiapine 7,25mg -> 0 (as of 1st Feb 2018)!!!!

April´18-March´19: fluoxetine 4,0mg - > 2,3mg. Jumped off fluoxetine 1,4mg due to pregnancy in July 2019. Oct 2019 severe withdrawal syndrome started.

Took mistakenly a complex for hormonal support that included pregnenolone dec2019-april2020. Stopped it april 2020 and immediately severe akathisia started. Have had life threatening akathisia since, 100% disabled, suicidal, very hard to hold on. 

 

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  • 1 month later...

Sounds compelling and terrifying.

 

Someone in the comment section said she came close to being diagnosed schizophrenic.

 

How in all the world do you present with seizures and the physical problems she had and they say you are schizophrenic?  Very scary. 

I am not a medical professional and nothing I say is a medical opinion or meant to be medical advice, please seek a competent and trusted medical professional to consult for all medical decisions.

 

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  • Mentor

I just read this book about a woman who went pretty much psychotic turned out to be in a strange auto-immune reaction. It was gripping. She was initially misdiagnosed and told to stop "partying," but her condition was grave and the cause was very obscure.

 

It's called Brain on Fire, by Susan Cahalan.

 

http://www.amazon.com/dp/B007EDOKZW/ref=pe_385040_118058080_TE_M1T1DP

I was given one valium, I went psychotic.  All the doctors said "that can not happen"....  thought I got over it, three days later the second wave effect hit.  In a mental hospital for three weeks.  I did not realise, as they all said "that can not happen"...Well 18 years later, I took 25% of one of those valium tablets, I hung in the first wave, three days later, the second wave.... Luckily they let me out of the psychiatric hospital the next day, cause my medical records had "allergic to valium"  on them, even though the doctors denied valium would do this.  The weird thing, is I can tolerate Temazepam, thus the confusion.  But they are different.   

1992 Dothiepin 375mg 8 weeks, exhaustion/depression.  Serotonin syndrome, oh yes!  seizures . Fell pregnant, 3rd baby, Nitrous Oxide, 3 weeks mental hospital pp psychosis. zoloft tegretol.

Feb 1996 ct tegretol, tapered Zoloft 8 weeks. as (unexpectedly)  pregnant. Steven died after 3 days.(Zolft HLHS baby).  98 had run in with Paxil, 2 tablets, 3 weeks taper, survived.
2005..menopause? exhausted again. Zyprexa, mad in three days, fallout....  Seroquel, Effexor, tegretol,   and 8 years of self destruction. Failed taper.
Damn 1/4 valium... nuts again! .fallout, zoloft 100mg  seroquol 400mg mirtazapine 45 mg  tegretol 400mg.  Mid 14 3 month taper. Nov 14 CRASH.
Mid 15 ....   75mg  seroquel,  3 x 1800mg SJW  2 week window end of December followed by 6 week wave
5/2 68mg seroquel, 2.5 x 1800mg SJW::::20/2 61mg seroquel, 2.5 x  SJW::: 26/2 54mg seroquel, 2 x SJW::::21/3 43mg seroquel, 1 x 2700SJW :::: 23/4 36mg seroquel 1 x 1800 SJW
15/5 33mg seroquel, 1 x SJW::::   28/5 30mg seroquel, 1 x SJW::::;  18/6 25mg seroquel 1/2 SJW::::, 11/7 21mg seroquel 1/2 SJW::, 26/7 18mg seroquel 1/2 SJW:::, 9/8 12mg seroquel :::, 16/8 6mg seroquel ;;;;, 12/9 0 jump.

23/9  3mg.....,  27/9 0mg.  Reinstated, 6mg, then 12mg.............  LIGHTBULB MOMENT,  I have  MTHFR 2x mutations.  CFS and issues with MOULD in my home. So I left home, and working 150km away during week, loving it.

Oh was hard, panic attacks first week, gone now, along with the mould issues.

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  • Mentor

 

I just read this book about a woman who went pretty much psychotic turned out to be in a strange auto-immune reaction. It was gripping. She was initially misdiagnosed and told to stop "partying," but her condition was grave and the cause was very obscure.

 

It's called Brain on Fire, by Susan Cahalan.

 

http://www.amazon.com/dp/B007EDOKZW/ref=pe_385040_118058080_TE_M1T1DP

I was given one valium, I went psychotic.  All the doctors said "that can not happen"....  thought I got over it, three days later the second wave effect hit.  In a mental hospital for three weeks.  I did not realise, as they all said "that can not happen"...Well 18 years later, I took 25% of one of those valium tablets, I hung in the first wave, three days later, the second wave.... Luckily they let me out of the psychiatric hospital the next day, cause my medical records had "allergic to valium"  on them, even though the doctors denied valium would do this.  The weird thing, is I can tolerate Temazepam, thus the confusion.  But they are different.   

 

And the uppers and downers to "stabilize me"  in that first mental hospital, nearly killed me three times, but for some obscure reason I both survived, and demanded my medical records.  I have them, wish me luck and health enough to write my book, amazon sounds fantastic.

1992 Dothiepin 375mg 8 weeks, exhaustion/depression.  Serotonin syndrome, oh yes!  seizures . Fell pregnant, 3rd baby, Nitrous Oxide, 3 weeks mental hospital pp psychosis. zoloft tegretol.

Feb 1996 ct tegretol, tapered Zoloft 8 weeks. as (unexpectedly)  pregnant. Steven died after 3 days.(Zolft HLHS baby).  98 had run in with Paxil, 2 tablets, 3 weeks taper, survived.
2005..menopause? exhausted again. Zyprexa, mad in three days, fallout....  Seroquel, Effexor, tegretol,   and 8 years of self destruction. Failed taper.
Damn 1/4 valium... nuts again! .fallout, zoloft 100mg  seroquol 400mg mirtazapine 45 mg  tegretol 400mg.  Mid 14 3 month taper. Nov 14 CRASH.
Mid 15 ....   75mg  seroquel,  3 x 1800mg SJW  2 week window end of December followed by 6 week wave
5/2 68mg seroquel, 2.5 x 1800mg SJW::::20/2 61mg seroquel, 2.5 x  SJW::: 26/2 54mg seroquel, 2 x SJW::::21/3 43mg seroquel, 1 x 2700SJW :::: 23/4 36mg seroquel 1 x 1800 SJW
15/5 33mg seroquel, 1 x SJW::::   28/5 30mg seroquel, 1 x SJW::::;  18/6 25mg seroquel 1/2 SJW::::, 11/7 21mg seroquel 1/2 SJW::, 26/7 18mg seroquel 1/2 SJW:::, 9/8 12mg seroquel :::, 16/8 6mg seroquel ;;;;, 12/9 0 jump.

23/9  3mg.....,  27/9 0mg.  Reinstated, 6mg, then 12mg.............  LIGHTBULB MOMENT,  I have  MTHFR 2x mutations.  CFS and issues with MOULD in my home. So I left home, and working 150km away during week, loving it.

Oh was hard, panic attacks first week, gone now, along with the mould issues.

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  • Mentor

 

 

I just read this book about a woman who went pretty much psychotic turned out to be in a strange auto-immune reaction. It was gripping. She was initially misdiagnosed and told to stop "partying," but her condition was grave and the cause was very obscure.

 

It's called Brain on Fire, by Susan Cahalan.

 

http://www.amazon.com/dp/B007EDOKZW/ref=pe_385040_118058080_TE_M1T1DP

I was given one valium, I went psychotic.  All the doctors said "that can not happen"....  thought I got over it, three days later the second wave effect hit.  In a mental hospital for three weeks.  I did not realise, as they all said "that can not happen"...Well 18 years later, I took 25% of one of those valium tablets, I hung in the first wave, three days later, the second wave.... Luckily they let me out of the psychiatric hospital the next day, cause my medical records had "allergic to valium"  on them, even though the doctors denied valium would do this.  The weird thing, is I can tolerate Temazepam, thus the confusion.  But they are different.   

 

And the uppers and downers to "stabilize me"  in that first mental hospital, nearly killed me three times, but for some obscure reason I both survived, and demanded my medical records.  I have them, wish me luck and health enough to write my book, amazon sounds fantastic.

 

Should also say thankyou for the link, I need to read this book.

1992 Dothiepin 375mg 8 weeks, exhaustion/depression.  Serotonin syndrome, oh yes!  seizures . Fell pregnant, 3rd baby, Nitrous Oxide, 3 weeks mental hospital pp psychosis. zoloft tegretol.

Feb 1996 ct tegretol, tapered Zoloft 8 weeks. as (unexpectedly)  pregnant. Steven died after 3 days.(Zolft HLHS baby).  98 had run in with Paxil, 2 tablets, 3 weeks taper, survived.
2005..menopause? exhausted again. Zyprexa, mad in three days, fallout....  Seroquel, Effexor, tegretol,   and 8 years of self destruction. Failed taper.
Damn 1/4 valium... nuts again! .fallout, zoloft 100mg  seroquol 400mg mirtazapine 45 mg  tegretol 400mg.  Mid 14 3 month taper. Nov 14 CRASH.
Mid 15 ....   75mg  seroquel,  3 x 1800mg SJW  2 week window end of December followed by 6 week wave
5/2 68mg seroquel, 2.5 x 1800mg SJW::::20/2 61mg seroquel, 2.5 x  SJW::: 26/2 54mg seroquel, 2 x SJW::::21/3 43mg seroquel, 1 x 2700SJW :::: 23/4 36mg seroquel 1 x 1800 SJW
15/5 33mg seroquel, 1 x SJW::::   28/5 30mg seroquel, 1 x SJW::::;  18/6 25mg seroquel 1/2 SJW::::, 11/7 21mg seroquel 1/2 SJW::, 26/7 18mg seroquel 1/2 SJW:::, 9/8 12mg seroquel :::, 16/8 6mg seroquel ;;;;, 12/9 0 jump.

23/9  3mg.....,  27/9 0mg.  Reinstated, 6mg, then 12mg.............  LIGHTBULB MOMENT,  I have  MTHFR 2x mutations.  CFS and issues with MOULD in my home. So I left home, and working 150km away during week, loving it.

Oh was hard, panic attacks first week, gone now, along with the mould issues.

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I just read this book about a woman who went pretty much psychotic turned out to be in a strange auto-immune reaction. It was gripping. She was initially misdiagnosed and told to stop "partying," but her condition was grave and the cause was very obscure.

 

It's called Brain on Fire, by Susan Cahalan.

 

http://www.amazon.com/dp/B007EDOKZW/ref=pe_385040_118058080_TE_M1T1DP

I was given one valium, I went psychotic.  All the doctors said "that can not happen"....  thought I got over it, three days later the second wave effect hit.  In a mental hospital for three weeks.  I did not realise, as they all said "that can not happen"...Well 18 years later, I took 25% of one of those valium tablets, I hung in the first wave, three days later, the second wave.... Luckily they let me out of the psychiatric hospital the next day, cause my medical records had "allergic to valium"  on them, even though the doctors denied valium would do this.  The weird thing, is I can tolerate Temazepam, thus the confusion.  But they are different.   

 

 

I've read of that happening, someone I spoke to a bit on another board had a reaction to exactly one dose of Prozac and one dose of a benzo (I think Ativan but can't recall exactly now.)  It was unbearable for him but he did recover.  He had severe akathisia (though thankfully could sleep) and other issues. 

I am not a medical professional and nothing I say is a medical opinion or meant to be medical advice, please seek a competent and trusted medical professional to consult for all medical decisions.

 

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  • 1 month later...

I just read this book about a woman who went pretty much psychotic turned out to be in a strange auto-immune reaction. It was gripping. She was initially misdiagnosed and told to stop "partying," but her condition was grave and the cause was very obscure.

 

It's called Brain on Fire, by Susan Cahalan.

 

http://www.amazon.com/dp/B007EDOKZW/ref=pe_385040_118058080_TE_M1T1DP

it is this disease

http://en.wikipedia.org/wiki/Anti-NMDA_receptor_encephalitis

 

I had to look.  

"Given that the majority of patients are initially seen by psychiatrists (not neurologists) due to the development of psychiatric symptoms, it is critical that all physicians (especially psychiatrists) consider anti-NMDA receptor encephalitis as a cause for acute psychosis in adolescents with no past neuropsychiatric history.'

 

I do recall something about this intravenous immunoglobulinsin my own life I do not recall why it was mentioned in response to high IGg at one point... perhaps... one person mentioned it another said either unattainable or unrealistic... when I say persons I mean doctors.  I do recall the doc who tested it was the liver doc.

 

Coming clean in the respect I can't understand it.... not then and not now. I thought IGg was an allergy...

looked that up too 

 http://en.wikipedia.org/wiki/Intravenous_immunoglobulin

In Canada recommendations caught my eye figure they use it for really sick people.. as they say there may be a shortage . There is a list of recommended uses and then a list of not recommended uses. Top of the list 

"

Not recommended for use, except under certain life-threatening circumstances[11]
  • Acquired hemophilia

Interesting only because now I know there is such a thing as acquired hemophilia ... so the gynecologist who gave me a hemophilia drug may not have been as off the wall as he appeared if he thought this is what he was treating... thing is he never said a word to me about the nature of the drug... I found out when I went to pp.

 

links related

 

http://nypost.com/2009/10/04/my-mysterious-lost-month-of-madness/

http://www.cumc.columbia.edu/features/quick-diagnosis-rare-disease-leads-remarkable-recovery

https://aealliance.org/   that one is an auto immune encephalitis alliance

 

I hope that is the end of my googlitis for today.

WARNING THIS WILL BE LONG
Had a car accident in 85
Codeine was the pain med when I was release from hosp continuous use till 89
Given PROZAC by a specialist to help with nerve pain in my leg 89-90 not sure which year
Was not told a thing about it being a psych med thought it was a pain killer no info about psych side effects I went nuts had hallucinations. As I had a head injury and was diagnosed with a concussion in 85 I was sent to a head injury clinic in 1990 five years after the accident. I don't think they knew I had been on prozac I did not think it a big deal and never did finish the bottle of pills. I had tests of course lots of them. Was put into a pain clinic and given amitriptyline which stopped the withdrawal but had many side effects. But I could sleep something I had not done in a very long time the pain lessened. My mother got cancer in 94 they switched my meds to Zoloft to help deal with this pressure as I was her main care giver she died in 96. I stopped zoloft in 96 had withdrawal was put on paxil went nutty quit it ct put on resperidol quit it ct had withdrawal was put on Effexor... 2years later celexa was added 20mg then increased to 40mg huge personality change went wild. Did too fast taper off Celexa 05 as I felt unwell for a long time prior... quit Effexor 150mg ct 07 found ****** 8 months into withdrawal learned some things was banned from there in 08 have kept learning since. there is really not enough room here to put my history but I have a lot of opinions about a lot of things especially any of the drugs mentioned above.
One thing I would like to add here is this tidbit ALL OPIATES INCREASE SEROTONIN it is not a huge jump to being in chronic pain to being put on an ssri/snri and opiates will affect your antidepressants and your thinking.

As I do not update much I will put my quit date Nov. 17 2007 I quit Effexor cold turkey. 

http://survivingantidepressants.org/index.php?/topic/1096-introducing-myself-btdt/

There is a crack in everything ..That's how the light gets in :)

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