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JanCarol - undiagnosed! Off all "bipolar" drugs!

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JanCarol

In Australia, Lithium was the treatment of choice.  My doctor-friend back home was shocked.  "But lithium has such a narrow treatment window!"  By this she meant that the difference between effective and toxic was very small, and that it was a risky drug to take.

 

The new psychiatrist gave me 45 minutes, not 12.  She was warm and very Zen - I thought I'd found a good one.  She continued my treatment with Effexor and Mirtazapine, but at some point she felt I was getting wound up.

 

Well heck, I had just moved 14,000 miles, brought my cat of 17 years (who died at the age of 19, after enjoying Paradise for 2 years), left my community, my friends, my family - and my husband was working full time.  I sat on the back porch and smoked.

 

So when she felt I was not "responding" like she thought I should - and true confessions, I was making a major mistake too - she switched me to lithium and Effexor.  Eventually the Effexor went away, and a tricyclic replaced it, and Seroquel for sleep.  At some point, I quit the tricyclic, and became suicidal (and confessed that to her), so she put me on an SNRI.

My mistake?  I told her all of my feelings, everything that was happening to me.  I relished the drama of the big move, and my aloneness, and she was one of the few people I could talk to - so I did.  And I got drugged for it.  And since I had already bought into the "broken brain" thing, I took the drugs.

 

You see, when I converted  to "broken brain," (in 1998)  I made rules:

1.  Take "meds" as prescribed.

2.  Sleep every day as needed.

3.  Eat every day as needed.

 

Failure to do any of these, I was certain, would result in a breakdown.  (I still believe in Rules #2 & 3, but I was oh-so-wrong about Rule #1.  And it was Rule #1!)

 

But I was still depressed, unrelentingly depressed.

 

I sat on the back porch and smoked and read and smoked.  I have a list of the books I got out of the library during that time.  There were about 300 of them.  I only remember a few.

 

Hubby told the therapist - "I wish she would do something."  

I spent my time at the "Club" - playing Pokies (one armed bandits) and entering raffles.  Or at chemists - buying skin care stuff to go with my drugs.  And smoking on the back porch.

 

I joined a karate club, but there were a lot of dramas with that, too.  I kept trying, and I credit karate and my sensei for accepting me as I was, and letting me train, even when I was in bad shape.  I gained 50 pounds.  There was no music in the house, I couldn't figure out how to fly my genius musician husband's equipment, and I'd sold all my equipment to leave the States (different electric here, anyway).

 

Karate went through many iterations - a national club, an independent club, acquired by an international affiliate which blew up in huge drama, then I followed sensei to a "rugby karate" club where I got hurt and couldn't keep up with the young people.  With all of these changes, I never advanced - the goalposts kept moving.  I've now been training in karate since 2004 - 14 years, and I'm still just 1st Kyu (almost a black belt, but not).  Out of respect for my dedication and time, Sensei has called me "Shodan-ho" which is "provisional black belt," but I still haven't tested for it, haven't earned it.

 

So Karate was the light of my life - and a frustration, too.  When the rugby karate hurt me, I felt I had nothing.  But - with karate I came to a point where I could not run across the gym without getting palpitations (now I know they are PVC's) and breathless.  This spurred me to dedicate 3 months to quitting cigarettes.  That was the start of my healing, but it didn't stop the palpitations or breathlessness like I expected.

 

One of the services in Australia is "Pharmacist Review," and my GP recommended it.  The pharmacist came to my home to review my supplements and drugs.  I thought she was going to balk at all of my fish oil, Vitamin C, glucosamine and CoQ10.  But no - she took me off a PPI, Proton Pump Inhibitor.  Okay then.  That was easy enough - and it started me thinking about - if that drug was harmful, what of my other drugs were harmful?  

I looked to the statin, as I was having severe muscle weakness.  I tapered it.  (I did it backwards, I didn't know better - I should've tapered the PPI, and just quit the statin).

 

As I started feeling better, I found Robert Whitaker's "Anatomy of an Epidemic," and I haven't looked back.

10 Years of lithium damaged my kidneys (they still act up - diabetes insipidus), gave me metabolic disorder, probably contributed to the gut biome problem I'm working on now.  But worse than all of that - the lithium didn't help at all.  It numbed me to everything, leaving me with deep anhedonia, I cared about nothing.  I went through the motions.

I decided - I was unhappy.  If I was so unhappy on the drugs - well, I had a lifetime of experience with being unhappy.  I could be unhappy without the drugs.  So I found SA and started tapering.

I was lucky that I found SA before I started my taper.  I had been planning to do the 10% but there was so much more to learn than just the 10% tapering plan!  
 

I still want to write a letter to that psychiatrist.  I have another friend who still goes to her.  She was gentle, and she did support my taper, though she thought I was going too slowly, and she expressed her doubt that I could get off the drugs.  She said she had seen lots of people who want to come off, but very few who successfully do.

I'd like to tell her about the kidney damage.  I'd like to tell her that I had a visible goitre, and she had no business prescribing lithium to me.  But then - I'm also glad that I don't need to see a psychiatrist at all.  (though I still find myself getting defensive when the word "bipolar" or "anxiety" comes up in a doctor's office.)

I've been wanting to finish this story for months, so - now it's a complete record in SA's recovery stories.

Back to your regularly scheduled thread....  😺

Edited by JanCarol

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Altostrata

Amazing how we come to know ourselves, JanCarol. It's been wonderful seeing you resume your blooming.

 

Thanks, as ever, for being part of our community.

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manymoretodays

Excellent JC.

 

........and I can so relate to some parts of your journey.

Especially reading Robert Whitaker's book, when I did.......and then the timeline around that. 

I'll get to doing one of these someday........success story.

 

This is one of my regularly scheduled threads!

 

Love, peace, healing, and grrrrowth,

mmt

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nicolantana

Hey Jan Carol, we have chatted before, not sure.

Just been reading your thread, very inspirational, at least at the beginning

 

I don't have the concentration to read the whole thing! so let me ask a couple of questions....

 

my symptom is primarily anhedonia, and everything that comes with that.

No emotions, no energy, no engagement, no appetite, no libido, no sense of anticipation, disconnected from everything around me

which means an inability to get into a book, a movie, to enjoy socialising, exercise etc....I still do alot of these things, to pass the time, but feel no benefit, apart from time passed and maybe some new knowledge acquired , but no emotional benefit to anything I do

 

Can you comment on what this was like for you, and is like now??

Anhedonia and its effects and how it cleared...

 

I'd be very grateful,

 

Nicholas

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JanCarol
On 9/18/2018 at 10:18 PM, nicolantana said:

my symptom is primarily anhedonia, and everything that comes with that.

No emotions, no energy, no engagement, no appetite, no libido, no sense of anticipation, disconnected from everything around me

which means an inability to get into a book, a movie, to enjoy socialising, exercise etc....I still do alot of these things, to pass the time, but feel no benefit, apart from time passed and maybe some new knowledge acquired , but no emotional benefit to anything I do

 

Can you comment on what this was like for you, and is like now??

Anhedonia and its effects and how it cleared...

 

Hey Nicholantana - 

 

Thanks for commenting.  

 

Anhedonia was probably my worst symptom, too. 

The drugs made it, and as I withdrew (over 2 years) it was like crawling out of a mudpit.  Very slow, very gradually, my head poked above the mud.  Then, as I continued tapering, when I was about halfway through the taper, my eyes, my senses were out of the mud, and my anhedonia had converted to lethargy and fatigue, as my legs were still striving through thick mud.

I cannot tell from your signature how you came off the drugs - it looks like you did a fast taper in only one month?  Please, can you update your signature to include what doses you were taking when you quit?

 

Anyhow, the reason that is important is - it took me 2 years to come out of the mud.  By 1 year I could see I was going to make it - but that was a slow, careful taper.  If you CT'd or fast tapered, you may have a different timeline, or, even if it is the same timeline, you have been off the drugs less than a year.  In my experience here as a moderator, it seems that the CT people experience similar timelines to slow tapers, but with more symptoms and intensity of symptoms.

 

I reckon it is important that you not rock the boat - simple diet, simple supplements (magnesium and fish oil), and do not take anything to try and "fix" things.  You may be tempted to take something to sleep, or to drink to "feel something," but resist that urge.  It will only delay your recovery.  Slow and steady wins the race in withdrawal!

 

* * *

I came here today to report that I'm dropping balls.  I added "teaching tai chi" to my schedule, so now I am struggling to get library books returned, missed a yoga class, and my delayed cycle sleep is rampant again.

 

I can only keep so many balls up in the air.  I want to believe that I can expand and grow, but it's vitally important to tend to my limitations, too.  Rest is vital.  Alone time is essential.  If I go-go-go-go, then I will drop balls.  Since the tai chi ball is so important to me, it's vital that I not drop that one.

 

I had visions that I would distribute flyers (I've distributed a few) every week, write an article for the local paper, contact other helpful possibilities to spread the news about my class, but I've been doing well to be where I am supposed to be, do what I'm supposed to do, and get home to hubby to rest.

 

I'd love to have the stamina and energy to do more, but seeing as how I'm dropping balls - there does seem to be a limit as to how much I can take on.

 

And - it's making it harder to see the sun! (even though hubby needs sunwalks now, too, for his back, we've only gotten in 2-3 a week!)

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nicolantana

Thanks Jan Carol.

 

 

I'm not sure how to update signature, can you let me know??

 

I was on a crazy, unjustified amount for a short time. seroquel 250, olanzapine 10, Mirtazapine 30, lex 20. For about three months, came off over the space of 7/8 weeks.

21 months ago. 21 months clear, anhedonic 90% of time. Had my strongest window yet 4 weeks ago. My best week in two years. Back to zombie mode now. Any idea of a time frame I should expect?? thanks for getting back to me.

 

 

hope you rediscover a sense of balance!

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YellowRoses
On 8/18/2017 at 12:19 AM, JanCarol said:

But my mental and emotional life is healthier than I’ve ever been before.  I have compassion for my fellow human in a way I couldn’t before.  I have passion for what I am doing, and a sense of purpose.

I am driven to create, to share, to learn, to grow.  I love meeting with people and listening, and feel so incredibly fortunate.  I’m older and wiser than ever before, and I still have a lot of healing to do.  But I am awake, alive, and grateful to be so. 


This gives me hope for one starting out on this process of reclaiming myself from medication. Thank you for sharing the extensive notes about the process, what helped, how you helped yourSelf. 

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JanCarol
On 10/2/2018 at 6:42 PM, nicolantana said:

Had my strongest window yet 4 weeks ago. My best week in two years.

 

YAY!!!!  That means you will heal.  You had a whole week of window.  

 

Hang in there - it's hard to do when you don't care (anhedonia) - but you know that you are healing, you've had a window.  That's the first peek above the mud.  It will get better!

 

Time frame?  It's different for everybody.  It depends a lot on your ability to surf the symptoms, learn from them, and integrate the lessons - which is not an easy task.

 

To update your signature go to: Account Settings – Create or Edit a signature.

 

* * *

So - other news.  I'm through the "killing and shedding" phase of my gut biome change, and into the "new gut bugs" phase, and I'm liking it.

 

I did an "allied health" appointment with the nurse at my GP's office.  If I do this "allied health" thing, Medicare will pay for my next 5 osteopathic (or chiropractic, if that's what you prefer) appointments.  That's not even private health cover - but the government program!  

 

Anyhow, at the allied health appointment - all of my measures of health are greatly improved since I started this journey.  I am 13 kilos lighter (that's almost 29 pounds!), my blood pressure is awesome - she reported my resting heart rate at 48 bpm (I didn't know I was that healthy!).   My fasting blood sugar could be better, but it's not a concern, my cholesterol is improved (look, ma, no statins!).  She kept trying to find drugs that I have been on that I am still taking, but only the thyroid.  Only the thyroid.  ONLY the thyroid!  (how many times I said it, I don't know).

 

So - a new osteopath, one treatment and it is helping.  I have been having shoulder and neck pain, and the adjustment (no crunching, I don't know how he does it) did cause post-pain, but it's settled now, and my head is floating more freely above my shoulders, and the shoulder / arm pain is improved.

 

I'm still dropping balls - my yoga studio is closing and I need to find new venues for my activities.  I've found a new yoga teacher at a beautiful studio, but I don't know if she is open to adding my stuff to her already busy class schedule (she runs 3 studios and I don't know how many yoga teachers.  She is 70, and an EXCELLENT yoga teacher).  And I don't really have the energy or opportunity for doing a lot of self-promotion right now.  Stay tuned.

 

My tai chi class has had 4 students in 6 weeks.  But it's been rainy (Aussies hate going out in the rain) and "school holidays" (Aussies don't do anything on holidays!), and even though I've done a little promotion - it's not enough.  And I'm not sure when I will have time to promote because - egads the studio is closing (I still have about 50 flyers with that info on it)

 

but because - 

 

I've been tapped out for a black belt test on 6-December!

 

OMG!

 

I've been training with these people for nearly 15 years, so I know what I'm doing.  But - this is exceptional for 2 reasons:

1.  It is the first Black Belt Test ever for this style, and it is vital that they distinguish themselves as a style by the curriculum for the black belt test.

2.  I am the only student being tested, so I'm a bit of a guinea pig for trying out their style curriculum.

 

I have 5 senseis training me, all of the classes are now about "what I need for the test" - which is awesome.  I have 7 weeks now to prepare.

 

Sensei thinks I've been waiting for 10 years for this test, but I don't have the heart to tell him that the first time I was training for black belt was in 1986.... so I've been waiting (and delayed and delayed) for 32 years.  The longest 1st Kyu (that's a belt level) in history.


But I feel strong and well, and my health metrics are looking good.  

 

I think I got this (even if it feels like I'm scrambling like mad right now)!

 

It's rained all week, so - I will welcome the sun when it returns!

 

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JanCarol

Musical Interlude:

 

  

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Hibari
On 10/13/2018 at 3:08 AM, JanCarol said:

 

YAY!!!!  That means you will heal.  You had a whole week of window.  

 

Hang in there - it's hard to do when you don't care (anhedonia) - but you know that you are healing, you've had a window.  That's the first peek above the mud.  It will get better!

 

Time frame?  It's different for everybody.  It depends a lot on your ability to surf the symptoms, learn from them, and integrate the lessons - which is not an easy task.

 

To update your signature go to: Account Settings – Create or Edit a signature.

 

* * *

So - other news.  I'm through the "killing and shedding" phase of my gut biome change, and into the "new gut bugs" phase, and I'm liking it.

 

I did an "allied health" appointment with the nurse at my GP's office.  If I do this "allied health" thing, Medicare will pay for my next 5 osteopathic (or chiropractic, if that's what you prefer) appointments.  That's not even private health cover - but the government program!  

 

Anyhow, at the allied health appointment - all of my measures of health are greatly improved since I started this journey.  I am 13 kilos lighter (that's almost 29 pounds!), my blood pressure is awesome - she reported my resting heart rate at 48 bpm (I didn't know I was that healthy!).   My fasting blood sugar could be better, but it's not a concern, my cholesterol is improved (look, ma, no statins!).  She kept trying to find drugs that I have been on that I am still taking, but only the thyroid.  Only the thyroid.  ONLY the thyroid!  (how many times I said it, I don't know).

 

So - a new osteopath, one treatment and it is helping.  I have been having shoulder and neck pain, and the adjustment (no crunching, I don't know how he does it) did cause post-pain, but it's settled now, and my head is floating more freely above my shoulders, and the shoulder / arm pain is improved.

 

I'm still dropping balls - my yoga studio is closing and I need to find new venues for my activities.  I've found a new yoga teacher at a beautiful studio, but I don't know if she is open to adding my stuff to her already busy class schedule (she runs 3 studios and I don't know how many yoga teachers.  She is 70, and an EXCELLENT yoga teacher).  And I don't really have the energy or opportunity for doing a lot of self-promotion right now.  Stay tuned.

 

My tai chi class has had 4 students in 6 weeks.  But it's been rainy (Aussies hate going out in the rain) and "school holidays" (Aussies don't do anything on holidays!), and even though I've done a little promotion - it's not enough.  And I'm not sure when I will have time to promote because - egads the studio is closing (I still have about 50 flyers with that info on it)

 

but because - 

 

I've been tapped out for a black belt test on 6-December!

 

OMG!

 

I've been training with these people for nearly 15 years, so I know what I'm doing.  But - this is exceptional for 2 reasons:

1.  It is the first Black Belt Test ever for this style, and it is vital that they distinguish themselves as a style by the curriculum for the black belt test.

2.  I am the only student being tested, so I'm a bit of a guinea pig for trying out their style curriculum.

 

I have 5 senseis training me, all of the classes are now about "what I need for the test" - which is awesome.  I have 7 weeks now to prepare.

 

Sensei thinks I've been waiting for 10 years for this test, but I don't have the heart to tell him that the first time I was training for black belt was in 1986.... so I've been waiting (and delayed and delayed) for 32 years.  The longest 1st Kyu (that's a belt level) in history.


But I feel strong and well, and my health metrics are looking good.  

 

I think I got this (even if it feels like I'm scrambling like mad right now)!

 

It's rained all week, so - I will welcome the sun when it returns!

 

What an acknowledgement by your teachers that you are ready to be tested. I can feel how much this means to you.  

 

JC, I was reading the beginning of this thread and you wrote you had lithium toxicity.  I feel I have Lamictal toxicity and recently saw a holistic psychiatrist who said she felt my body was fighting the drug at this point.  This is someone who specializes in antidepressant withdrawal.   I take my morning dose and am sick the rest of the day.  She wants me to move on my remaining taper, not crazy fast but at this point holding is not making me better, in fact making it's making me worse. . In other words, to go back to tapering 10%   In addition to the horrible nausea, headache and physical tension, I'm having have the  paradoxical reaction of becoming hyper with a medication meant to calm. 

 

How did you manage tapering the last of your Lithium, with it being toxic but knowing you had to take it to avoid extreme withdrawal?  

 

Hibari. 

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JanCarol

Hey All - 

 

Nicholantana writes:

On 10/2/2018 at 6:42 PM, nicolantana said:

I was on a crazy, unjustified amount for a short time. seroquel 250, olanzapine 10, Mirtazapine 30, lex 20. For about three months, came off over the space of 7/8 weeks.

21 months ago. 21 months clear, anhedonic 90% of time. Had my strongest window yet 4 weeks ago.

 

Yar, that is a crazy cocktail - and the seroquel and olanzapine might mean a longer recovery slope.

 

But you are having windows!  Even if they are just 10% windows, they are windows!

 

Keep on putting one foot in front of the other, even when it has no meaning, even when you don't want to...time will help you the most.

 

Hey @Hibari - I've been meaning to get back here for your question - sorry, but I don't spend much time on the computer right now - 

 

On 10/15/2018 at 8:34 AM, Hibari said:

feel I have Lamictal toxicity and recently saw a holistic psychiatrist who said she felt my body was fighting the drug at this point.  This is someone who specializes in antidepressant withdrawal.   I take my morning dose and am sick the rest of the day.  She wants me to move on my remaining taper, not crazy fast but at this point holding is not making me better, in fact making it's making me worse. . In other words, to go back to tapering 10%   In addition to the horrible nausea, headache and physical tension, I'm having have the  paradoxical reaction of becoming hyper with a medication meant to calm. 

 

How did you manage tapering the last of your Lithium, with it being toxic but knowing you had to take it to avoid extreme withdrawal?  

 

I see that other moderators have helped you with your reduction.  Keep in mind that doctors always want to taper faster.  Even the holistic ones, especially the holistic ones, as they are big on "detoxing" which is a harmful practice in withdrawal.

 

At that level I have difficulty seeing the drug as "toxic."  Especially since you used to be on 200 mg, and are now down around the 6 mg mark.

 

As I went down in lithium, my symptoms got better.  My taper was gradual enough that I worked on my moods & participation in life gradually.  The moods returned, the participation returned - gradually, just like my taper.

If your fast taper starts to stir things up - remember to hold.  Usually we go slower at the bottom rather than faster.

 

Non-drug techniques are awesome for calming.

 

Lithium toxicity - I never went totally toxic, though it damaged my kidneys and probably my gut.  Big time lithium toxicity - what happens when someone on lithium takes too much or dehydrates - requires dialysis.  I never got that bad.

 

Lamictal toxicity - I haven't read your thread, but there are toxic rashes and stuff with lamictal.  If it were me, I would continue with 10% tapering, and just tolerate the symptoms.

 

Some of the symptoms may be the symptoms of your own, native state returning with a rage (see Neuro-emotion), and not related to tapering at all.

 

* * *

 

Well, I came here to report that the phenibut taper is going well, I could probably drop off but won't.

 

I've said "Yes" to another thing - actually volunteered to teach a meditation class at the senior centre next year.  Next Friday I go to the "open day" to show my "wares."  I'll be sitting at the tai chi table, which is good, as I'm a strong advocate for that practice, as well.

 

Karate training is exhausting.  I'm not training that much extra - but for me, it's enough to keep me so that I don't have energy for computer, creativity, or much else.  So if I'm scarce 'round here, that's why.

 

I'll try and come back and post something more about the phenibut tapering - my heart and meditations (em-Wave HeartMath monitor) are still wobbly, but improving.  And I am no longer having the rages that I was having during the first part of my taper.  I'm probably on a sub-clinical amount for me now, but like I said before, I'll continue tapering all the way down.

 

Off to teach a tai chi class!  I have 2 faithful students, with 2 potential students who are flirting with the idea.  But if they don't show up in 90 degree heat - I can't say as I blame them.  I haven't marketed much more - so much stuff to do, so little energy.

Edited by JanCarol

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JanCarol

Why Tai Chi is the perfect exercise for withdrawal - gentle healing:

 

  

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JanCarol

Golly - note to self - don't wait too long in between posts!  Too much happens!

I completed (and survived) my Black Belt Test.  I am now Shodan of Hino Tori Karate!  I worked hard, and I earned it!  YAY!

For the first week afterwards, I thought I was going to bounce back.  But the week after that, the pains began.  Knee (always, it's damaged), elbows (elbows?  really?), sacrum, and sometimes hips and the other knee, too.

So that's where I am now.  Still there.  Nothing seems to touch the pain, it's hard to sleep - but the wild thing is, emotionally, even mentally - I'm well.  The body complains, and I have to work around a lot of things.  

(example, I had an armload of stuff, and tried to carry a thing with my right arm - elbow said, "no" so - egads, I picked it up with my left pinky.  My left pinky finger is stronger than my right elbow at this point in time.)

But I'm forging on.  I've been called up to the National Broadcaster to go on a quiz show in less than 2 weeks time.  

From anhedonic, fatigued, "useless human being," to quiz show contestant.  On National TV.  

 

It's not exactly productive - it's surreal!  But - the path to this was made easy for me, and I can't help thinking that there's a purpose to this, even if it's just to improve my confidence, speaking skills, or to make a total fool of myself on National Television so that I never am embarrassed by anything after that.  Maybe there's someone I'm meant to meet, a new friend to make.  Maybe it's just a confidence building exercise.  

Whatever it is, that's what's next.

 

See you on the other side!

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JackieDecides
19 hours ago, JanCarol said:

I completed (and survived) my Black Belt Test.  I am now Shodan of Hino Tori Karate!  I worked hard, and I earned it!  YAY!

 

very impressive! 

sorry about the pain, though. 

19 hours ago, JanCarol said:

emotionally, even mentally - I'm well

 

!!!!!!!!!!!

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noearthlyfamily

hi JanCarol

 

ChessieCat reccomended you as one of the few people who've made it thru tothe other side of withdrawal to the success of healing after over 20 years of psych meds. i had commented earlier that i wish there was someone who had made it thru after being on the meds as long as i have (24 years) that is a success story to give me hope,  and i'm so glad she reccomended you so i can read your story and be encouraged that healing after 2 decades on multiple psych meds is indeed possible and doable!

 

HUGS!

noearthlyfamily

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Happy2Heal

@noearthlyfamily


 

On 3/3/2019 at 1:38 AM, noearthlyfamily said:

hi JanCarol

 

ChessieCat reccomended you as one of the few people who've made it thru tothe other side of withdrawal to the success of healing after over 20 years of psych meds. i had commented earlier that i wish there was someone who had made it thru after being on the meds as long as i have (24 years) that is a success story to give me hope,  and i'm so glad she reccomended you so i can read your story and be encouraged that healing after 2 decades on multiple psych meds is indeed possible and doable!

 

HUGS!

noearthlyfamily

hi there noeartlyfamily

 

JanCarol's story is quite impressive.

and she's not the only one,  as you can see from my signature, I was on psych drugs of all kinds for over 40 yrs and am now almost fully recovered.

 

I spent years on anti psychotics, lithium, lamictal, and lots of others, but for me personally one of the most damaging and difficult to get off of have been the SSRI's.

I was also on massive doses of Seroquel, that I needed to help me sleep when I went on some drugs and/or off others (my drug history is a mess)

I took 800mgs of Seroquel at one point, mostly I was on 600mgs.  I stopped that cold turkey and my main symptom was neuropathy in  my hands and feet, mostly my feet.

 

I see from your drug history we were on many of the same meds, you're the first person I've met who was also prescribed serzone. 

 

anyway, recovery from taking multiple meds over long periods of time happens.

 

going a lot slower than I did is a much better way to do it, though ;)

 

 

 

 

 

 

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noearthlyfamily
2 hours ago, Happy2Heal said:

@noearthlyfamily


 

hi there noeartlyfamily

 

JanCarol's story is quite impressive.

and she's not the only one,  as you can see from my signature, I was on psych drugs of all kinds for over 40 yrs and am now almost fully recovered.

 

I spent years on anti psychotics, lithium, lamictal, and lots of others, but for me personally one of the most damaging and difficult to get off of have been the SSRI's.

I was also on massive doses of Seroquel, that I needed to help me sleep when I went on some drugs and/or off others (my drug history is a mess)

I took 800mgs of Seroquel at one point, mostly I was on 600mgs.  I stopped that cold turkey and my main symptom was neuropathy in  my hands and feet, mostly my feet.

 

I see from your drug history we were on many of the same meds, you're the first person I've met who was also prescribed serzone. 

 

anyway, recovery from taking multiple meds over long periods of time happens.

 

going a lot slower than I did is a much better way to do it, though ;)

 

 

 

 

 

 

 

hey Happy!!

 

yeah serzone, one of the ones that got  yanked pretty quick, i had a bad adverse reaction to it the first time they gave  it to me in the hospital also. sigh. but most the baddies are still on the ,market. ugh i hate seroquel. 

 

i'm having peripheral neuropathy in my hoohah of all places, i went through it in my feet and hands in the past on higher doses and had to use a cane and a walker to ambulate cause i couldn't feel my feet. the neurologist loved using the safety pin prick test on me. although i never felt nor flinched at all while he poked those safety pins into my feet and legs knee down! i thought he was playing a joke but the next day after those tests the tiny pinprick bruises would show up on my legs where he'd stabbed me lol. neuropathy is no joke.

 

thanks for welcome and i'm gonna go read your story!

 

hugs

 

 

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JanCarol

Welcome NoEarthlyFamily!

Yes, you can heal.  It is vitally important to be kind and ruthless at the same time.  

Kind to yourself, treating your pain and symptoms like a newborn baby.  Do only what you can do when you can do it.  Your capacity and stamina will gradually increase over time.

 

But

 

Ruthless to those strategies and self-sabotage and dramas.  When I became so sick, I found it easy to say "no."  No drama.  No draining "friends," no excessive stimulation, no to doing too much, and NO to whipping myself into "being productive."  Just wait, it will come.

I have found that I am mostly back to where I was before the lithium.  Back then, I was able to work about 15-20 hours a week.  I am now teaching a meditation class, assisting with a karate class, attending a tai chi class and a yoga class every week.  2-3 times a month I meet with my Shaman group/s, and serve them with my Drum.  I'm almost keeping up with correspondence, though sadly, not much at SA, as the real world takes a lot of my attention.  I'm getting the laundry done, getting my teeth brushed and face washed, and sleeping pretty well. 

I have huge support from hubby - we have a cleaner every fortnight to get the worst of our filth sorted, and he does most of the cooking and takes care of the dishwasher and cat box.  He helps me get out the door on time, and helps me carry things when they are too heavy.  If I were alone, I would not be this productive.  So kudos to a supportive husband!

I am off the phenibut!!!!!  I have a few capsules left (OMG contraband!), that I will keep for emergencies.  I no longer have issues with the heartbeat irregularity, so thanks to tai chi and meditation, I feel I have avoided a "cardiovascular issue."  What was it?  Was it part of lithium withdrawal?  Would it have resolved naturally without the phenibut?  (and of course, the tai chi is excellent for cardiovascular:  study was done.  Two groups.  Six weeks.  One group did Zumba, fun uplifting cardio workout.  The second group did tai chi.  Tai chi was equal to Zumba in all the cardiovascular measures, and was superior in endocrine and blood sugar measures.)  I'm off the lithium orotate, as well (time to update sig)

I have a vital question to ask all of my SA friends.  Please chime in with an opinion - I want to hear all kinds of opinions about this before I decide what to do.

I have received a letter from the Aussie government.  They have been contacted (through Medicare.  egads, privacy!) by a corporate medical research institute (QIMR Berhofer) inviting me to participate in a study on "Genetics of Bipolar Disorder."

I spewed my coffee on the keyboard when I read "Genetics of Bipolar Disorder" - YES I believe it "runs in families" but I don't believe it's genetic.  

What they are studying:

 

Quote

Lithium is mainly used as a part of a treatment program to assist patients with Bipolar Disorder.  The Department of Human Services has sent you this letter because this records show that you have been prescribed Lithium at some time in the last five years.

We invite you to participate in our study that will investigate the genetic factors that influence Bipolar Disorder as well as genetic factors that determine response to Lithium treatment.  Specifically our study is trying to find genetic markers that are common to people who have been diagnosed with Bipolar Disorder and respond to Lithium compared to those that have not.  

We are asking for you to complete an online questionnaire about your mental health experiences and medication history and to supply us with a sample of saliva which we will use to extract your DNA.

Participation is voluntary, anonymous, and confidential.

 

OKAY so if I sign up and tell them how toxic and dangerous lithium is, will they just discard my results?

It looks like this study is designed to "find better ways to drug people" which offends me deeply.  Reading more about it, they are convinced by the twin studies that there is a genetic component to bipolar disorder (funny, I know these studies, identical twins 60% concordance with bipolar disorder - but - if that's truly genetic - what about the other 40%.  Shouldn't identical twins be - identical?)...

This angers me in a lot of ways, but there is a chance that I can espouse my views that lithium is dangerous and toxic.  An opportunity to share my results and experiences with researchers.

Then there's the saliva thing.  I'm not keen on that, but they claim anonymous and confidential.  But do I trust them, really?

Please - what do you think SA'rs?  Is this an opportunity?  Or an invasion?

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Happy2Heal
2 hours ago, JanCarol said:

OKAY so if I sign up and tell them how toxic and dangerous lithium is, will they just discard my results?

It looks like this study is designed to "find better ways to drug people" which offends me deeply.  Reading more about it, they are convinced by the twin studies that there is a genetic component to bipolar disorder (funny, I know these studies, identical twins 60% concordance with bipolar disorder - but - if that's truly genetic - what about the other 40%.  Shouldn't identical twins be - identical?)...

This angers me in a lot of ways, but there is a chance that I can espouse my views that lithium is dangerous and toxic.  An opportunity to share my results and experiences with researchers.

Then there's the saliva thing.  I'm not keen on that, but they claim anonymous and confidential.  But do I trust them, really?

Please - what do you think SA'rs?  Is this an opportunity?  Or an invasion?

 

I can understand the temptation to try to educate them but honestly, they won't even notice it or care.

it's an invasion IMO (esp the way they went about it, omg don't even get me started on that) and under no circumstances would I send my precious DNA off to a gov't agency of ANY country, let alone the United States of Corruption. no do not trust them, time and time again, they have shown themselves to be untrustworthy.

 

you are right, they just want to find new drugs. and/or try to justify using the drugs they already are

I'm an identical twin.

I have a paternal uncle who fit the old definition of bipolar (back then called something else) My maternal grandmother also fit that definition. Neither one was ever medicated, they self medicated with alcohol (they both died from falls when intoxicated)

 

I was diagnosed bipolar when I'd never had a manic episode- I didn't have any "mania" until I was put on an SSRI

My twin sister was eventually diagnosed as bipolar by the same psychiatrist that I was seeing, and she's never had a manic episode. She was never given lithium as I was, she was given lamictal which she is terrified to stop taking because she doesn't want to "relapse" from her imaginary illness that even she now questions.

 

we both had some understandable depression and we both have PTSD from multiple traumas dating back almost to birth, but I don't think either of us ever had any of the many different conditions we were diagnosed with. And certainly never the classic bipolar of the past, before drug companies got involved in trying to treat mental illnesses. You've read Anatomy of an Epidemic, and other related books, I think...? then you know, the percentage of the population with manic depression remained very stable at, I think, 0.3%? don't quote me on that figure, I'm not good with numbers lol

but as soon as they were fishing for drugs and profits to treat the condition, the number of ppl diagnosed with it skyrocketed.

more patients=more profit

 

anyway, as far as twin and genetics- there's genes and then there's gene expression (often called "turning genes on and off") There are many factors that influence which genes are expressed (environment, lifestyle etc) So while my identical twin sister and I have supposedly identical genes (even this is not true, genes mutate, so we likely have a number of individual mutations) the expression of those genes won't be identical.

 

I'm happy to hear you're doing so well and glad you've got a supportive husband. Having supportive people in our lives can make a huge difference. :)

 

 

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JanCarol

THANK YOU H2H!

 

I understand epigenetics, but even with epigenetics under consideration, many writers (Paula Caplan, Joanna Moncrieff, and Whitaker among them) think that if there is a genetic connection with bipolar, it should be a higher hit rate than 60%.

 

Were you involved in any twin studies?  Researchers drool when they think they can get their hands on some twins. . . 

The spit sample is not going to the government.  The government just hooked us up.  Here's how I think it worked:

The research company contacted the government and said, "can you contact those who have been on lithium and see if they will do the study?"

If I do not contact the research company, they will never know anything about me.  The government knows I've been on lithium, because they paid for it.  The government does not know whether I participate in the program or not.  They just "hooked us up."

However, I'm just as leery of sending to the research company.  Looking them up - I see that they were founded by the State of Queensland (QIMR = Queensland Institute of Medical Research) but I don't know what the "Berghofoer" name is.  So is it corporate?  Or government?  Or not-for-profit?  It has stuff around all 3.  I don't think I can buy stock in it - so not corporate - but some kind of blend of not-for-profit and government...

Thanks so much for your opinion, I'd love to hear from some more, too!  At the moment, I'm kind of leaning that way.  Towards NOT doing it.  But if I thought I could honestly help someone with my report- !!!!

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JackieDecides
13 hours ago, Happy2Heal said:

I can understand the temptation to try to educate them but honestly, they won't even notice it or care.

 

I don't feel smart enough to have an opinion (not in general, I mean just right now) but I think H2H is right.

 

they aren't looking to learn they are looking to earn. 

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JackieDecides
16 hours ago, JanCarol said:

I am off the phenibut!!!!! 

 

congratulations!!! 

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JanCarol
11 hours ago, JackieDecides said:

they aren't looking to learn they are looking to earn. 

 

Thanks JackieDecides!!!

They are not-for-profit.

 

Qui Bono?  Who benefits?  Australia is at the cutting edge of a lot of research (the heavily touted Gardasil came from here - the scientist who "discovered" the HPV vaccine won "Australian of the Year" or some other prestigious science aware)...

But if enough people say:  THIS DRUG SUX, IT DAMAGED MY KIDNEYS, I LOST MY THYROID.  Maybe - just maybe - no matter what it did for my mood (IT TURNED ME INTO A ZOMBIE, yes I had stable moods, but I couldn't feel ANYTHING ELSE), the toxic aspects of it can come to the fore?

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JackieDecides
9 hours ago, JanCarol said:

But if enough people say:  THIS DRUG SUX, IT DAMAGED MY KIDNEYS, I LOST MY THYROID.  Maybe - just maybe - no matter what it did for my mood (IT TURNED ME INTO A ZOMBIE, yes I had stable moods, but I couldn't feel ANYTHING ELSE), the toxic aspects of it can come to the fore?

 

well, hope so, but how to know if it's even possible? if you want to do it, you should. 

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Happy2Heal
On 4/8/2019 at 9:04 AM, JanCarol said:

  But if I thought I could honestly help someone with my report- !!!!

I understand that completely.

I guess you know the particulars a lot better than I do. 
I'm very wary of anyone who wants my DNA or anything else to be honest- I feel like too much has already been taken from me and it did NO one any good.  Well, except for the drs, and the drug companies, etc that profited off my suffering and my search for help.

:P

 

but you're too smart to get caught up in that sort of trap.

 

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