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(first travel in a decade since the pharmaceutical brain injury) To Boston


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The trip to Boston (first travel in a decade since the pharmaceutical brain injury)

 

https://beyondmeds.com/2017/08/26/boston-trip/

 

These are the status updates and tweets since my trip began in chronological order. I’m swamped and don’t have time to do anything more formal. At some point I will because so much more is happening than what I’m able to share in these limited reflections.
 

***

August 18. (while flying) The amount of stimulation among a mass of humanity in the airport and now on this plane is really over-whelming. (I’m mid-flight right now) It’s wild. I’m literally having a rebirth experience in a public setting and having to be quiet and act normal…******* insane. I’ve not traveled in over a decade and been mostly homebound. I’d like to be curled up on the floor sobbing but that’s not an option.
 

***

August 19 I am in boston…they lost my luggage and the cab dropped me off at the wrong address in the middle of a city I don’t know…big misadventure. I had to cancel my presentation because without out my luggage and none of my self-care articles I went into a massive auto-immune flare. I also may be stuck in boston indefinitely because I am not well enough to travel and I don’t know how long that will last…
 

life: it’s a wild trip. And I’m okay with that.

yup…it’s been a nightmare but now I’m enjoying the insanity…not worth staying in dismay about it…
 

***

my body is genius…of this I have no doubt

***
 

August 19. I’m doing very well…sick as hell but HAPPY too. ha ha…such is my life.
My body is always a big challenge…I’M THRILLED TO BE IN A NEW PLACE!! all is good.
Although, yes, initially, I had to process some devastation about not being able to do the presentation…now, I’m good…life is amazing…this body is amazing.

getting SO much support here. I seem to know more people in Boston than I do in Asheville…seriously…people are coming out of the woodwork helping me and offering assistance. I now have a place to stay at a friends for a week while she is out of town!! Amazing…beautiful and perfect. I am loved!!
 

***
 

August 20. If you find you cannot manage to avoid it, drama is ok. Simply pay attention while you’re in it. Fact is the dual plane is one of unavoidable drama. Dual plane of existence necessitates drama. May get more and more subtle with growing awareness, but that doesn’t mean it’s less significant.
 

***

August 22. This is how I sleep now in order to manage the edema which is out of control as a result of the flight. Pull the blankets right on over me…
 

sleeo.jpg?w=560&h=373

***
 

August 23. I’m stuck in Boston which is actually fun…if I’m gonna be physically challenged anyway, might as well do it in a new place.
really happy to be somewhere other than Asheville…the new energies floating in the urban air are really good for my brain.
as much as I love nature with a passion and need to be around it too on a regular basis I am also very much a city girl and I’m loving it.


I am the full spectrum!
 

I felt like I was back in my apartment over market St. in SF last night. Noisy street traffic was soothing. I loved that apartment. Healing takes on many weird forms. And revisiting my history in whatever way my body can manage seems to be part of that.
 

***

August 23. The universe/nature/life force strike me as both fundamentally benevolent and amoral. Another wondrous paradox that holds the mystery.

***
 

August 25. My body can be a very scary place. The injured traumatized child is running the show…in order to heal…I need to let her do that…the traumatized (deeply embodied child ) needs my trust to heal…she also needs me to parent her some and calm her the **** down from time to time

the healing process is a razors edge…sometimes she starts to spin out of control. My adult isn’t always good at separating from her terror. We’re working on it.
 

Chronic illness is the traumatized child writ large upon the body screaming for attention. I am listening.
 

The traumatized self, in paradox, holds within it the highest functioning self. It’s clear I cannot be healthy without heeding the child.
 

See: subpersonalities

***
 

August 26. So some crazy **** has gone down since I got to Boston. First I got stuck here because of weird body stuff that won’t let me fly home.

Then a good friend left town and let me stay in her wonderful, comfortable, very private apartment at no cost.
 

Then I found out my brother’s ashes are buried here with his mom’s (She died when he was 3, we grew up together from day 1. He’s my brother)
 

I didn’t know where he was buried because his funeral was in CA and I was too sick to go to the ash burial 2 years later)

BUT!! not only is he buried here, he’s actually in Medford (not Boston proper) AND Medford is actually where I’m staying at my friends house. Given that I’m on foot or bike this was an incredible reality because it was easy for me to go to the cemetery and hang out on his grave.
 

NOW…not only all of this, but his son, my nephew, is in college here in Boston — I didn’t know that either.
 

I’m estranged from most of my family because no one really believed or understood I was on death’s door for many years. This sort of familial estrangement is typical with these sorts of pharmaceutical brain injuries. Since the medical establishment denies us…It’s very easy for most people to be dismissed as simply “the crazy” one in the family. We’re fucked in so many ways when this happens.
 

In any case, my brother (and mother, too, really) were the only ones who believed me and loved me and understood me. His kids grew up in the meantime.

I am meeting my nephew for the first time in 10 years tomorrow. He was 9 years old last time I spent time with him. We are going to visit his father’s grave tomorrow.This is a mythical journey and my body/mind placed me here knowing exactly what it was doing.
 

Lots and lots more is happening but I don’t have the wherewithal to report on it now. I’ve hardly been online because there is too much to do and I don’t have mobile access either. Life has taken some radical surprising turns.
 

I’m being blown away…it’s like the psychosis is now my reality…and it’s all very very real, tangible and provable!!
 

ha ha…seriously.

***

Got to hang out with Bob Whitaker too! (he happens to be one of the kindest human beings on the planet…has been helping me out in big ways.)

bob.jpg?w=560&h=560

***

Everything Matters: Beyond Meds 

https://beyondmeds.com/

withdrawn from a cocktail of 6 psychiatric drugs that included every class of psych drug.
 

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Hi Monica,

The saddest part of your post above is the fact that you became estranged from most of your family.  It's so unfair that when it comes to any kind of mental illness or prescription-drug-induced (iatrogenic) damage, our friends and relatives are the first ones to cast us off as crazy, lazy, or fake.  Yet when people get sick with Cancer or some other tangible illness, everyone wants to offer support and understanding.

It's so great to hear though, that so many people "showed up" to help and support you in Boston.  I guess that's what happens when you go public about your illness for so many years.  This is rarely encouraged, especially in the baby boomer generation or those with baby boomer parents, like me.  "Don't hang your dirty laundry out to dry" is the motto.  

But I believe in educating any one who's willing to listen. Unfortunately I have found that without an MD behind my name, no one wants to believe me.  Oh well.  The message is getting out there, either way.  There is a purpose to our suffering.

 

2005-2008: Effexor; 1/2008 Tapered 3 months, then quit. 7/2008-2009 Reinstated Effexor (crying spells at start of new job.)
2009-3/2013: Switched to Pristiq 50 mg then 100 mg
3/2013: Switched to Lexapro 10mg. Cut down to 5 mg. CT for 2 weeks then reinstated for 6 weeks
8/2013-8/2014: Tapering Lexapro (Lots of withdrawal symptoms)
11/2014 -8/2015: Developed severe insomnia and uncontrollable daily crying spells
12/2014-6/2015: Tried Ambien, Klonopin,Ativan, Lunesta, Sonata, Trazadone, Seroquel, Rameron, Gabapentin - Developed Anxiety disorder, PTSD, and Psychogenic Myoclonus
7/2015-1/2016: Reinstated Lexapro 2 mg (mild improvement, but crying spells still present)

1/2016-5/2017: Lexapro 5 mg ( helped a lot, but poor stress tolerance & depressive episodes)

5/20/2017 - Raised dose to Lexapro 10 mg due to lingering depression(Total of 2 failed tapers & severe PAWS)

9/11/2018 - Present: Still on 10 mg Lexapro and mostly recovered.(Extremely sensitive to stress which triggers Myoclonus.)

Intro page: http://survivingantidepressants.org/index.php?/topic/4149-lilu-depression-worsened-by-meds/

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manymoretodays

Nice to hear how you are coping and some parallels as I had a trip all planned to the area earlier this month.......the greater Boston area.  I was gifted with funds to do so.  Unfortunately I hit a "stress response" that prohibited packing or even the travel itself.  I would have been in Medford with my brother and his wife and then in Northbridge with my sister and then in good old Natick(where my family of origin once lived).   I haven't been back for 6 years now......... :-(  I love it there too........just to visit though.

 

So for me.......it was mostly the thoughts gone all awry is the best I can do to describe it.  Huge disappointment........I hopefully minimized any harm to family and friends involved.  No real physical reactions other than temporary and passing stress related.  Working my way back to where I had been functioning.........slowly, surely..........

 

So very cool though to see your pictures, especially with Robert Whitaker!!  I assume you were to speak at the Alternatives Conference.  And you are coping and continuing to heal and stay cool.  Me too!

 

All my best......

 

Love, peace, growth, healing/recovery,

 

and manymoretodays........better days....... but who is complaining.........

Started with psycho meds/psychiatric care circa 1988.  In retrospect, and on contemplation, situational overwhelm.

Rounding up to 30 years of medications(30 medication trials, poly-pharmacy maximum was 3 at one time).

5/28/2015-off Adderal salts 2.5mg. (I had been on that since hospital 10/2014)

12/2015---just holding, holding, holding, with trileptal/oxcarb at 75 mg. 1/2 tab at hs.  My last psycho med ever!  Tapered @ 10% every 4 weeks, sometimes 2 weeks to

2016 Dec 16 medication free!!

Longer signature post here, with current supplements.

Herb and alcohol free since 5/15/2016. 

None of my posts are intended as medical advice.  Please discuss any decisions about your medical care with a knowledgeable medical provider. manymoretodays

 

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thanks for your comments...

 

Lilu, I would not have survived this without "going public" -- writing has always been a synergistic process between myself and the readers of the site...we heal one another...

 

and manymoredaystocome,

I had a false start two years ago when I spent a week packing for a trip to CA to visit my father before he died. I got right up to the night before I was supposed to leave for the airport and realized there was no way in hell it was going to happen. Still, I learned a lot about what was involved and (two years later) I got a little farther along...here in Boston now but still having some trouble --I am truly also loving being here...it's a crazy life, this. 

 

I never got to see my father before he died. that was heartbreaking and yet, I know I did right by this body. I'm sorry for how it's painful...your day will also come.

 

Much love to you both,

Monica

Everything Matters: Beyond Meds 

https://beyondmeds.com/

withdrawn from a cocktail of 6 psychiatric drugs that included every class of psych drug.
 

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manymoretodays

I am okay and yes my day will come.  It's today!  Good enough.

 

Ummm, can you do a post in some form of a Boston accent please?  :)  I don't know........too darn many lost is all........I must move on to something lighter now.

 

Love and hope and peace and faith and growth and healing baby!

 

mmt

Started with psycho meds/psychiatric care circa 1988.  In retrospect, and on contemplation, situational overwhelm.

Rounding up to 30 years of medications(30 medication trials, poly-pharmacy maximum was 3 at one time).

5/28/2015-off Adderal salts 2.5mg. (I had been on that since hospital 10/2014)

12/2015---just holding, holding, holding, with trileptal/oxcarb at 75 mg. 1/2 tab at hs.  My last psycho med ever!  Tapered @ 10% every 4 weeks, sometimes 2 weeks to

2016 Dec 16 medication free!!

Longer signature post here, with current supplements.

Herb and alcohol free since 5/15/2016. 

None of my posts are intended as medical advice.  Please discuss any decisions about your medical care with a knowledgeable medical provider. manymoretodays

 

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  • 1 month later...
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manymoretodays

GiaK dear,

 

Did you make it back yet?  :)  Sounded like a wicked start to an interesting trip.......... Like wicked cool adventure and just dealing with things as they come.  I don't know but I hope someone said wicked while you were there.   I remember using that term as a high schooler plus it's a W word like withdrawal that we all know and love and live with from time to time.  I like how you could see the positives despite some difficulties.......I need to adjust my attitude soon and quit worrying(hmmm, another w word).

 

Just thinking of you in other words.  I'll see what's up over on beyondmeds.org.

 

Love, peace, healing/recovery, growth, and time........thankful for time,

 

manymoretodays

Edited by manymoretodays

Started with psycho meds/psychiatric care circa 1988.  In retrospect, and on contemplation, situational overwhelm.

Rounding up to 30 years of medications(30 medication trials, poly-pharmacy maximum was 3 at one time).

5/28/2015-off Adderal salts 2.5mg. (I had been on that since hospital 10/2014)

12/2015---just holding, holding, holding, with trileptal/oxcarb at 75 mg. 1/2 tab at hs.  My last psycho med ever!  Tapered @ 10% every 4 weeks, sometimes 2 weeks to

2016 Dec 16 medication free!!

Longer signature post here, with current supplements.

Herb and alcohol free since 5/15/2016. 

None of my posts are intended as medical advice.  Please discuss any decisions about your medical care with a knowledgeable medical provider. manymoretodays

 

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hi...yes, I made it back. My husband had to come get me as I didn't dare get back on a plane. the edema is still an issue. it's been associated with a heavy metal detox that has been extremely taxing on my body.

life continues...both difficult and wondrous. 

 

thanks for asking! 

Everything Matters: Beyond Meds 

https://beyondmeds.com/

withdrawn from a cocktail of 6 psychiatric drugs that included every class of psych drug.
 

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GiaK I'm glad you got to meet Bob.  I did a little happy dance here with the thought of the two of you together, having a warm, friendly chat.

 

I do understand the travel problems.  When I tell people "I don't travel well," they think that means I get cranky about sleeping in strange beds or smelling strange smells or something.

 

Instead of the crippling need for multiple pillows (I am lucky thus far with the edema, but I was not drugged as badly as you), the cry for "where is the bathroom?" the need for medical support (another infection), and the wearying challenge of a tiring schedule and meeting people.

 

You've done well!

 

On 27/08/2017 at 2:41 PM, GiaK said:

Dual plane of existence necessitates drama.

 

Is this - the inner and the outer?  The Second Attention?


You are a shining light to all who are on the path to healing.

"Easy, easy - just go easy and you'll finish." - Hawaiian Kapuna

 

Holding is hard work, holding is a blessing. Give your brain time to heal before you try again.

 

My suggestions are not medical advice, you are in charge of your own medical choices.

 

A lifetime of being prescribed antidepressants that caused problems (30 years in total). At age 35 flipped to "bipolar," but was not diagnosed for 5 years. Started my journey in Midwest United States. Crossed the Pacific for love and hope; currently living in Australia.   CT Seroquel 25 mg some time in 2013.   Tapered Reboxetine 4 mg Oct 2013 to Sept 2014 = GONE (3 years on Reboxetine).     Tapered Lithium 900 to 475 MG (alternating with the SNRI) Jan 2014 - Nov 2014, tapered Lithium 475 mg Jan 2015 -  Feb 2016 = GONE (10 years  on Lithium).  Many mistakes in dry cutting dosages were made.


The tedious thread (my intro):  JanCarol ☼ Reboxetine first, then Lithium

The happy thread (my success story):  JanCarol - Undiagnosed  Off all bipolar drugs

My own blog:  https://shamanexplorations.com/shamans-blog/

 

 

I have been psych drug FREE since 1 Feb 2016!

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thanks for your comments JanCarol

 

I do hope I can travel more soon. I intend to stick closer to home and do short road trips next...whenever that might be appropriate...

 

and

 

our reality is the dual plane...and sure inner/outer is one aspect of it.

 

 

Everything Matters: Beyond Meds 

https://beyondmeds.com/

withdrawn from a cocktail of 6 psychiatric drugs that included every class of psych drug.
 

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  • 3 weeks later...

Dear GiaK,

 

 

A huge thank you for your great work that you have been doing through your website! You have been the most important beacon of light on my journey towards freedom from psychiatry – and I know there are countless others who think this way.

 

 

It was a shock to notice that you have made your blog private. What does that mean?

 

 

Knowing the enormous amounts of time and energy you have spent on it, it would be rude to ask you to continue updating your site. But is there a possibility to let the site remain, with a note it is not being updated anymore? It would continue to inform and inspire us, who are coming behind you, on our own paths but in (often desperate) need for hope for healing.

 

 

Best wishes, your grateful reader,

Althea

2008: Cymbalta 60 mg, caused "mania" -> stopped at 30mg; Seroquel 25 mg for sleep

Higher doses of Seroquel autumn 2008 and Lamictal started December 2008

2009: Seroquel XR 300 mg + Seroquel IR 300 mg + Lamictal 300 mg

2010: Lamictal down to 200 mg. 2011: Seroquel XR down to 200mg (by first tapering IR 25mg at a time).

2015: started tapering Lamictal, down to 175mg, held for two weeks, down to 150 mg. Got symptoms.

2016: tapered Lamictal, now with 10 % rule and 3-week holds. Got it down to 100 mg by the end of the year. No significant symptoms.

2017: tapered Lamictal, with 10 % or less and held 3-6 weeks in between. Got it down to 50 mg in July.

Oct. 2017-Feb. 2018: tapered Seroquel IR from 200mg to 150mg. Feb. 2018: made the switch: Seroquel XR down to 150mg and IR up to 200mg.

April 2018: continued tapering Lamictal, down to 46 mg. June-Oct. 2018: continued with BM slide, down to 35mg.

April 2019: made a switch: Seroquel XR down to 100mg and IR up to 250mg. July 2019: Seroquel IR down to 225mg. Aug. 2019: Seroquel IR down to 200mg. Dec. 2019: Seroquel IR down to 190mg.

Jan. 2020: Seroquel IR down to 180mg. Feb. 2020: Seroquel IR down to 175mg. March 2020: Seroquel IR back up to 200mg (due to stressful phase & insomnia). May 2020: Lamictal down to 34mg. July 2020: made a switch: Seroquel XR down to 50 mg and IR up to 250 mg. Held for 3 weeks, then IR down to 225 mg. Aug. 2020 Seroquel IR down to 200 mg. Nov. 2020: Lamictal down to 33mg.

 

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  • 2 weeks later...

althea:

 

I posted the site back up with this

 
 
best to you and everyone here. I won't be continuing as an active member. 

Everything Matters: Beyond Meds 

https://beyondmeds.com/

withdrawn from a cocktail of 6 psychiatric drugs that included every class of psych drug.
 

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  • 3 weeks later...

Thank you so very much, GiaK!

 

This means so much to me - all my tools for healing trace back to your site, including finding SA and preparing properly for tapering, and much much more. There were many synchronities, sometimes it felt like you somehow saw my situation as it felt like you were writing straight to me :) Those experiences gave me so much hope even though I never had the courage to comment. I miss your updates but I fully understand that at some point you had to move on. I'm so grateful for this opportunity to continue searching your archives on my own, it's such a precious gift. Your writings taught me the importance of paying attention to the body and listening to its wisdom.

 

I wish you all the best on your new phase of life. (I will be respecting your request and not contacting you ever again.)

 

With love and gratitude,

Althea

 

2008: Cymbalta 60 mg, caused "mania" -> stopped at 30mg; Seroquel 25 mg for sleep

Higher doses of Seroquel autumn 2008 and Lamictal started December 2008

2009: Seroquel XR 300 mg + Seroquel IR 300 mg + Lamictal 300 mg

2010: Lamictal down to 200 mg. 2011: Seroquel XR down to 200mg (by first tapering IR 25mg at a time).

2015: started tapering Lamictal, down to 175mg, held for two weeks, down to 150 mg. Got symptoms.

2016: tapered Lamictal, now with 10 % rule and 3-week holds. Got it down to 100 mg by the end of the year. No significant symptoms.

2017: tapered Lamictal, with 10 % or less and held 3-6 weeks in between. Got it down to 50 mg in July.

Oct. 2017-Feb. 2018: tapered Seroquel IR from 200mg to 150mg. Feb. 2018: made the switch: Seroquel XR down to 150mg and IR up to 200mg.

April 2018: continued tapering Lamictal, down to 46 mg. June-Oct. 2018: continued with BM slide, down to 35mg.

April 2019: made a switch: Seroquel XR down to 100mg and IR up to 250mg. July 2019: Seroquel IR down to 225mg. Aug. 2019: Seroquel IR down to 200mg. Dec. 2019: Seroquel IR down to 190mg.

Jan. 2020: Seroquel IR down to 180mg. Feb. 2020: Seroquel IR down to 175mg. March 2020: Seroquel IR back up to 200mg (due to stressful phase & insomnia). May 2020: Lamictal down to 34mg. July 2020: made a switch: Seroquel XR down to 50 mg and IR up to 250 mg. Held for 3 weeks, then IR down to 225 mg. Aug. 2020 Seroquel IR down to 200 mg. Nov. 2020: Lamictal down to 33mg.

 

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