JanCarol - undiagnosed! Off all "bipolar" drugs!

[JanCarol]

Touching base again, hi!

 

So - I'm over 6.5 years out from my last psych drug.

 

I got a thing from my natural doctor (He's an MD, not a naturopath) called a DUTCH test (this is an American thing, rare here in Australia - costs $500 to run, but he gave me a "free sample").  It's an intensive hormonal, endocrine test based on 24 hours of spit and urine at various intervals.  The thing freaked me out - I had to stop some supplements (mostly adrenal support, but also quercetin and a few other things that could tamper with the results), and had to take no coffee, tea, water or fluids so that the urine was concentrated enough to give a reading.  I looked at that DUTCH box for 6 months before I started to run out of thyroid medication, and had to do it.  It was intimidating!  (but I've had worse - I tried to do a pancreas test a couple of years back where you collect ALL your poo for 24 hours, and I just couldn't do that one, won't give you the details as to why - just that pooping is not an easy thing for me.)

 

So - got the results and some things were no surprise.  It's an amazing test, for those who can afford it!  Very low estrogen (well, duh, I have no female organs) - but Doc was good, he asked if I had any symptoms like hot flushes, night sweats, agitation, etc.  I said that was a decade ago.  I squealed that I didn't want HRT, and he was okay with that.    Progesterone is low, but OK, testosterone is fine.

 

One surprise was my melatonin, which was off the charts.  Top of the range was 85, mine was 1300+.  So I guess I don't need that supplement.  (NOTE TO SA PEOPLE:  Sun Walks Are Amazing!!!!)

 

But the big surprise - for a supposedly chill & calm tai chi & meditation teacher - was that my cortisol was through the roof!  Every stage of the cortisol cycle I was well above where it should be, and there was a late-night spike which might explain my delayed-cycle sleep.  In addition to the outrageous cortisol was an enzyme (8-OHdG or 8-Hydroxy 2 deoxyguanosine)  which indicates oxidative/DNA damage.  I'm sure they are related to each other = chronic stress => damage => stress => damage - a brutal cycle.  And I'm sure that the pain is in there somewhere.

 

(note;  seeing  "oxidative damage" did spike my medical anxiety - is it cancer? -  but I can set that aside for now!)(another note:  the last time I took a test like this in 2012, my cortisol was crashed, like a flat line = "adrenal fatigue."  So this is an improvement?  At least I can function?)

This lifted my awareness of what I'm dealing with.  It's true that there is more stress in teaching a  tai chi/qigong/meditation class than just practicing.  And I might increase that stress with the pressure of teaching - so in my own practice I'm pretty relentless and hard on myself, because I want to be good at what I do.  When I take a class to learn, I am working very hard to "get it right," and in my practice at home I don't allow fluffing - if I mess up, do again.  And again.  And again, until it's right.  This is self-pressure, self-stress.

 

The carpenter's house is falling down, the plumber's toilet needs fixing, the psychologist's kid is screwed up - and the tai chi teacher needs to chill!!!

 

So . . . . 

 

One of the things that came to me is - when my thyroid was removed in 2008, they damaged my vocal tendons and I lost the ability to sing to my satisfaction.  I can bellow and roar and croak - but no dulcet tones, and I lost about an octave off the top of my voice, so no soaring, emotional high notes (I squeak and cry when I try, and I can no longer hear harmonies because I can't make my voice go where I want).  I used to sing along with Jon Anderson and Anne Wilson (I was a strong alto), and now I struggle to sing along with Neil Young (and he sounds better than I do!).  So I haven't been singing for my own pleasure for 14 years.  Vagus nerve soothing.  Emotional release.  

 

So I will endeavour to sing more (poor hubby - though he's making me a CD of "sing along" songs in my new range).  In a perfect world I would find a practitioner who is a singing rehabilitation coach - a blend of voice therapy and singing lessons.  But I've been looking since 2008, and haven't found this blend.  I can find singing coaches, and vocal rehab - but not both.  I can speak fine.  A regular singing tutor may not know what to do with my damage.

 

But yeah, vagal nerve tone is now essential to my well-being going forward.  And it will take more than my current practices - apparently my parasympathetic nervous system wants attention!!!

 

Then, as I was preparing for a massage last Saturday, I got in the mag bath.  I usually take mag bath at the end of the day, so when tired, I melt into it.  But this was first thing in the morning.  I slithered into the bath and could feel my fascia, like a tension underneath the muscles that was firm & hard, and difficult to melt.  I've never "felt" my fascia before!  This got me to thinking. 

 

Do I have a mild form of tardive akathisia?  If this were the case, it might explain why my pain is so intractable, why the headaches are so difficult to release with breathwork (or injections, trigger point, manipulation, all the things I've tried).  It would explain the cortisol.  And it does feel like a vibration, underneath everything, I'm the kind of person who shakes her legs, restless, teeth grinding, hand tremors, doesn't do "still" very well - it's why I like moving meditation!   I can be reactive - barking dogs (for example) set me off, and they seem to set me off more than others.

 

THEN I got to thinking - did I have this tendency before I got drugged?  I think back into my 20's, and I was a hyper, stress puppy with delusions of grandeur (no wonder I got diag-nonsensed, eh?).  I had back pain long before I took any psych drugs or lost any organs.  

 

So maybe this is just an emphasized baseline.  The cards I got dealt that got me drugged in the first place.  Or maybe the 30+ years of drugging just made it worse.  

 

Course of action - is to reduce my stress.  Going through withdrawal taught me so much about this.  I no longer beat myself up if I'm late (or imperfect), all I can ever do is my best, and have learned say "NO!" when something is outside my boundaries or capabilities.  I don't take things personally (VERY important to recognise when a thing is "NOT MY PROBLEM" or NMP!)  One thing a day.  No toxic people (really!  I have no toxic people in my life!  How lucky is that?).  But that's not enough - there has to be something more, or I will kill myself with stress.  So - add in the singing, increase my home meditations, be mindful of my breathing, hurry up and relax NOW!  (that's a joke, you cannot use your sympathetic nervous system to activate your parasympathetic nervous system!)

 

Conclusion:  It's a mystery.  Doc offered to send me to an endocrinologist, I refused for now, saying I'd rather he treat me.  (Last time I went to an endocrinologist I got lectured about my metabolic disorder, had my waistline measured & scolded, and told "there is no essential carb."  I really felt castigated after that appointment!)  And when confronted with mysteries like this, I have to conclude:  psychiatrists really don't know what they are doing, do they?  (heck, do medical doctors even know what they are doing most of the time?)

 

I hope you see the sun today!

[Shep]

3 hours ago, JanCarol said:

One of the things that came to me is - when my thyroid was removed in 2008, they damaged my vocal tendons and I lost the ability to sing to my satisfaction.  I can bellow and roar and croak - but no dulcet tones, and I lost about an octave off the top of my voice, so no soaring, emotional high notes (I squeak and cry when I try, and I can no longer hear harmonies because I can't make my voice go where I want).  I used to sing along with Jon Anderson and Anne Wilson (I was a strong alto), and now I struggle to sing along with Neil Young (and he sounds better than I do!).  So I haven't been singing for my own pleasure for 14 years.  Vagus nerve soothing.  Emotional release.  

 

So I will endeavour to sing more (poor hubby - though he's making me a CD of "sing along" songs in my new range).  In a perfect world I would find a practitioner who is a singing rehabilitation coach - a blend of voice therapy and singing lessons.  But I've been looking since 2008, and haven't found this blend.  I can find singing coaches, and vocal rehab - but not both.  I can speak fine.  A regular singing tutor may not know what to do with my damage.

 

That's great hubby is making you a CD in your range. 

 

Do you play any instruments or have that desire? Just asking because I play a lot of instrumentals and find that so helpful for vagus nerve soothing. While I can sing and do so at times, a lot of the music I'm into right now is instrumental (found some gorgeous renditions of Ludovico Einaudi's piano music written out for guitar). So I'm not singing, but playing this music on guitar makes my soul sing. When I'm finished playing, I feel relaxed and restored. 

 

Even listening to Ludovico Einaudi is calming to the vagus nerve. Music is one of those non-drug coping ways of healing, whatever door you come through to get to it. 

 

3 hours ago, JanCarol said:

I hope you see the sun today!

 

You, too! 

[JanCarol]

Hi Shep!

 

Yes, there are instruments all around the house.  The guitar needs repair, though - the whole first fret doesn't work.  The piano is stacked up with stuff (I swore I wouldn't do that).  I found I don't really like the uke - too narrow on the frets.  The drums - ah, I could spend more time with my drums.

 

These instruments can help with parasympathetic (unless I have anxiety about the instrument - and there is trauma involved in music lessons in my life) - 

 

But the thing about the voice, which the other instruments cannot do - is that it vibrates the vagus nerve directly.  When you tone, chant, sing make your chest & organs vibrate with sound, you are vibrating the vagus nerve.

 

If only singing were more pleasurable instead of painful (to my ears, my ego, and sometimes to my throat, too).  I'm sure my breathing needs work after all these years, too.

 

I did find a voice therapist / singing coach - but she's in the UK.  She sounds terrific - has offered to do an online consultation.  I still don't know what she costs.  (I wish I could bill the surgeon who did the damage!)  In some ways, I'd rather do online - nothing like a trip to City (or wherever it might be - up the coast, down the coast) to fill up a whole day.  An online appointment means that I don't have travel to some distant appointment, and can take the appointment in my jammies.  Though - I can only zoom on tablet (not computer) - I wonder about the quality of sound.  

I talked to an artist friend of mine once about online art lessons, and she said - oh.  There's so much you miss online.  Texture, colour, depth, she said she would not teach online for that reason, she needs to be tactile with the student.  And there's an element of that with the vocal coach - especially if the sound quality isn't great.

 

So we'll see.  I'll try and coach myself for a bit, make more efforts to stretch.  There may be YouTube vocal exercises which might help me (confession:  I haven't looked - this is a cutting edge for me!).

 

Thanks for checking in - and I hope you see the sun today!!!!

Edited August 31, 2022 by JanCarol
drums, surgeon

[Shep]

10 hours ago, JanCarol said:

But the thing about the voice, which the other instruments cannot do - is that it vibrates the vagus nerve directly.  When you tone, chant, sing make your chest & organs vibrate with sound, you are vibrating the vagus nerve.

 

I did not realize this. Thank you. This makes sense. 

 

10 hours ago, JanCarol said:

I talked to an artist friend of mine once about online art lessons, and she said - oh.  There's so much you miss online.  Texture, colour, depth, she said she would not teach online for that reason, she needs to be tactile with the student.  And there's an element of that with the vocal coach - especially if the sound quality isn't great.

 

I hear you on this. I started taking online art classes during the pandemic and would love to take an in-person class. But I'm still getting a lot out of the online classes and my drawing skills are greatly improving. I feel like while this is my best option, I'll learn what I can and look forward to being able to take an in-person class in the future. 

 

10 hours ago, JanCarol said:

There may be YouTube vocal exercises which might help me (confession:  I haven't looked - this is a cutting edge for me!).

 

I've learned so much from YouTube! It's amazing what you can find there. 

 

I hope you find your voice on your path of recovery. Your words have helped countless people, including myself, here on the forum. Please take good care of yourself. 

[Bertoh]

Hi @JanCarol. I've read your story a few times and wow are you STRONG. I wish to be even an ounce as brave and resilient as you some day.

 

I write you as I have a question regarding your lithium tapering. I see in the your sig that the last 475 of your tapering took about a year

 tapered Lithium 475 mg Jan 2015 -  Feb 2016 = GONE

 

I was wondering if I was misreading that or if that's accurate. If the latter, I'd love to learn more about your taper schedule in that scenario. I'm honestly daunted by the idea of a 10% 5 year taper for the 450 lithium I'm taking as a hypothesis is that I have these crippling headaches and nausea due to the lithium. 1 year though, I can do so if you were able to do that amount safely in a year I'd love to replicate it.

 

Thanks for hearing me out and apologies if I misunderstood that part of your sig. So happy for how your life is going now...may it remain full of love and peace forever!

[HardWork]

@Bertoh @JanCarol Me too, same question! I'm on 610 lithium...the thought of 7 years is 😞.  Bertoh-, same question to you.. You went from  600 mg to  450 mg in just a month? 

[Bertoh]

Hi HardWork! Hope all is well for you ❤️

 

I tapered 450 > 300 per my psych's rec 

 

Believe their plan is to do 150 every 2-3 months. Being fully honest it's hard to resist when thinking year vs years timleine so this weighs on my mind quite heavily

[JanCarol]

Hey Bertoh and HardWork - thank you for stopping by!

 

You are concerned about:

On 9/3/2022 at 4:39 AM, Bertoh said:

I write you as I have a question regarding your lithium tapering. I see in the your sig that the last 475 of your tapering took about a year

 tapered Lithium 475 mg Jan 2015 -  Feb 2016 = GONE

If you read further you will see:

Quote

 Many mistakes in dry cutting dosages were made.

 

I screwed up so badly that I frightened myself and started Lithium Orotate, which I continued as a supplement for 2 years.  I started on 5 mg, and had it down to a tiny dose of .81 for the last six months.  It's less bioavailable than lithium carbonate, less strong - but my fear of going stark raving mad was very real.  My p-doc had said months prior, that I was "no longer on a therapeutic dose" and I could stop anytime, but I didn't believe her.  Please be cautious about p-doc suggestions about tapering - they have these ideas about "therapeutic dose" and such that they don't understand.

 

Lithium is a different animal to SSRI's and other psych drugs.  I'm not a pharmacologist or doctor, so I don't actually understand how lithium works.  (truth be told, your doctor likely doesn't, either)  Instead of fiddling neurotransmitters like the psych drugs, it does something else.  Like a damper on the whole nervous system or something.  I am not going so far as to say you can taper faster on lithium because I only have my experience to go by.

I got lucky.  I had a big self-care toolkit by this point, so if I did go stark raving mad, I had some options to look to.  Meditation, mag baths, sun walks, supplementation, therapy, tai chi, yoga, karate, music, drumming, community, and a supportive husband.  

 

By the time I got off the lithium carbonate, I was having such severe health problems, that my mood was moot.  I got lucky.  I didn't go stark raving mad (though I still wrestle with depression, and now, apparently, "anxiety!").  I still struggle with the health problems, and it's a complex knot.  Where does the lithium damage end, and the loss of thyroid & ovaries begin?  Could I have saved my thyroid if I hadn't been on lithium (and drinking fluoridated water)?  How much metabolic damage was done by the tricyclics, SNRIs, SSRIs and neuroleptics ("antipsychotics") over the decades, or was that all the lithium?  I don't have any way to untie that knot, so I proclaim: "this is what I have, this is what I'm dealing with, I'm angry that this was done to me so carelessly, but this is what I'm left with," and move forward.

I saw an Abraham Lincoln quote:  "I walk slowly, but I never walk backwards."

 

Lithium is toxic.  I spoke to a friend yesterday about her brother who, at age 21, went stark raving mad in New Zealand and was walking around in singlet and shorts in their winter ("classical bipolar" - I told her about the Quaker model of care for breakdowns, and that the more drugs you take the more intractable the problems are, but she wasn't buying - plus - he was drugged in an era before Prozac and the marketing of "mental health").  He got doped with lithium then, and recently he lost a kidney.  He got 40+ years on the lithium, whereas I was starting to feel damaged by 10.  Of course, my friend believes in psychiatry and is so happy that they switched him to Epilim/Depakote.  "He's so much better now!"  (I think he's in his 70's now)  I warned her that the Epilim would eat his liver.  She said, "Oh, he's stays on top of those things."

I held my tongue, but I was reminded of how, my own p-doc (who really, as p-docs go, was a good one, a "minimalist prescriber" but still a prescriber with faith in the drugs).  She kept telling me my bloods were fine when I was complaining of kidney symptoms (and being a zombie).  I had to educate her that Diabetes Insipidus was a thing, and was a damage/side effect from lithium.  I made her look it up.  And - if his p-doc was watching his bloods - how did he end up losing a kidney?  Really?  Are those blood tests good for anything?  (STILL:  keep taking the blood tests!  It's the only clue you will get about damage, other than symptoms!)

 

So again - beware a p-doc taper.  I recommend sticking to the SA plan as much as possible.  If your symptoms are minor, you may be able to go faster.  I failed to stick to the SA plan, but got lucky and got off.  You might consider my coping strategy and cross taper to Lithium Orotate.  As far as I can tell, from my experience, "stark raving mad" (you know the line from the movies, "she's off her meds") is the main danger of tapering lithium too fast.

 

You are both on fairly low doses.  I don't know your histories, as to whether either of you experienced naked-in-the-streets-stark-raving-madness.  Also - it helped that I had my husband here - p-doc educated him as to what to look for if things went awry.  When I decided to taper, she held a special session with both of us to develop a contract so that if I "got high" or spun out, there was a plan in place.

 

Remember  - if you taper from extended release, you have to take it 2x a day when you break the tablet.

 

I walk slowly, but I never walk backwards.  And I hope you see the sun today!
 

[JackieDecides]

On 8/29/2022 at 10:31 PM, JanCarol said:

But the big surprise - for a supposedly chill & calm tai chi & meditation teacher - was that my cortisol was through the roof!  Every stage of the cortisol cycle I was well above where it should be

 

wow, it's amazing and horrible what can be happening to us while all the time we keep putting one foot in front of the other. and mistake it for "normal" sometimes? 

I hope you can use what you found out to help normalize your levels! 

 

 

On 8/29/2022 at 10:31 PM, JanCarol said:

I hope you see the sun today!

 

wow, is this what I need. I dread the upcoming winter! 

[JanCarol]

Just a quick share:  Looking Up.

 

I was driving through my town, and saw a huge billboard that said "LOOK UP!"

 

And so I did a little looking and found this:  http://www.gliderglobal.com/wp-content/uploads//THE-ART-AND-SCIENCE-OF-LOOKING-UP-REPORT_2019.pdf  

 

Looking up

 

Looks good!

 

It's part of what my Sun walks are about - seeing the horizon, the sky.

[Mirtazapine20mg]

Hi again @JanCarol, I am not going to spam you. But the Denmark/Australia story regarding lithium is actually interesting. Here is what Mogens Schou wrote about John Cade: 

"Cade and I met on three occasions: when he and his wife visited us in Denmark in 1972, when he and I shared the International Scientific Kittay Foundation Award in 1974 and when my wife and I visited the Cades in Melbourne the following year.  He was a mild-mannered, modest person who once said of himself: “I am not a scientist. I am only an old prospector who happened to pick up a nugget.” But prospectors find because they seek. John Cade was characterized by insatiable curiosity, keen observation, willingness to test even absurdly unlikely hypotheses and the courage to run the risk making a fool of himself."

 

On a personal note: I just read through your introduction regarding lithium and I find your descriptions fascinating - especially regarding lithiums toxicity. If I in anyway have left the impression that lithium is benign or 'a good thing' it was certainly not my intention. I myself was offered lithium and refused, albeit after long period of contemplation. I am still ambivalent  about the use of lithium in the acute fase of madness (I have been there, so I use the word madness lovingly). Besides, I think neither Skou nor Cade had evil intentions. And finally: After 20 years on 'modern' ADs I somehow have more confidence something like lithium, but used short-term. I think you get my point. 

[JanCarol]

Hi Mirt!

 

Yes, John Cade was a very typical Australian.  Living at the ends of the earth has taught me a lot - about how to make do, scarcity (though Australians today are less ingenious than they were just 20 years ago) and making it work.

My Aussie husband charmed me with his "can do" attitude, and his ability to think through problems and come up with solutions using what is available at hand.  Don't need the waterbed?  Convert it to a bookcase!  There are quite a few men his age that I think of as "renaissance men" not because they are educated - they usually aren't - but because they can play & write music, cook a meal, mend the cupboard, build a table, repair the tyre, trim the tree, rewire the lamp, and improvise to get the desired results (My USA Mom was a lot like this too - skills from a different era!).  For example, during WW1 & 2 when petrol was in limited supply, outback Australians converted the Model T to a wood-burning car!

When I read the stories of Cade - this is the kind of man I perceived.  He wasn't a scientist, he did some work with animals - and he noticed and observed in his improvisations with lithium that he was getting results.  He reported these results - and the snobs in US & UK thought - who is this yobbo?  How can this compare to my Oxford (or Harvard) degree?  The original Citizen Scientist!    (another fascinating tale like this is Nurse Kenny, whose protocols reversed many of the ill effects of polio - again the Educated said, "she's just a nurse" and tried to ignore & suppress her work - but others - like Alan Alda - had their lives saved & improved using her protocols.)

 

Additionally, around Melbourne are these amazing mineral springs.  A spring 50 metres from the next spring will have an entirely different mineral content.  I can't help but to wonder if he got interested in lithium because of the variety of minerals in these (hundreds of) springs.  Last time we drove down, we carried all the glass bottles we could find in the house, and collected from about 20 of these different springs (sadly, we can't do this if we fly).  There are people in the area who won't drink anything but that mineral spring water, and collect it weekly.  I'm sure that each has their favourite spring, hundreds to choose from!

 

Lithium doesn't really work short term, sorry.  It's one of those things that makes a change and if you like that change, you have to maintain it.  Lithium has always been prescribed "for life."  That's one of the horrors about it, since it is so toxic.  This is why I advocate for VERY LOW DOSE, if anything.  And the prescription drug, lithium carbonate, must be dispensed by doctors and they will insist on what they call "therapeutic range."  When, in my experience, 1/10th of "therapeutic dose" still has effect, and much less toxicity.   This is one of the discussions (arguments!) that my p-doc and I had - she said, "you're below therapeutic range, you can just quit."  Right.  So why do people drink San Pelligrino and Perrier?  The benefits were initially perceived in water.  That water with lithium in it was calming.  

 

But if you look at the dosages of the prescriptions - and compare it to water - no wonder it is hard on the kidneys!  I think the dose I was on, I would have to drink something like 12 gallons of water daily to make my prescription-to-water ratio more like the natural source.

And now for something completely different - Denmark!  1000 years ago, that's where my ancestors were (before they raided England) and that's where they fled to when the Normans came (I've traced them as they fled further east and south to Kiev).  Last year, hubby and I discovered the Danish TV series, "Borgen," and really got engrossed .  I'm a little chagrined because we messed up the episodes  and so missed some major events in the last 2 seasons.  But fell in love with Sidse Babette Knudson, and have since seen her in a number of films & series, like Westworld, and more recently, the French film, "Courted."  Oh!  And the beauty of Birgitte Hjort Sørensen and the amazing Søren Mailing, he portrayed his character with amazing depth and skill.

Thank you so much for writing, and thank you for stimulating conversation where you visit here at SA.  I appreciate that!

 

I hope you see the Sun today!

JC

Edited October 4, 2022 by JanCarol

[Mirtazapine20mg]

Hi JanCarol, thank you for writing what in reality are little essays. I will of course answer but there is so much good stuff here, so it is going to take little time. But for now: Thank you for writing on the importance of writing.

[JanCarol]

Denmark!  Olga Runciman - one of the stellar practitioners who brings people back from "psychotic states."

Get back to me when you can, all good.

 

See the sun!

[JanCarol]

On 12/7/2017 at 1:18 AM, JanCarol said:

So - I was looking up some stuff for MMT (Hi there!) on my hard drive, and I found a Glenmullen symptoms list for me from 2013-2017.

 

In 2013 I had 29 symptoms:
Worsened mood 

Low energy (fatigue, lethargy, malaise)

Trouble concentrating 

Insomnia 
Suicidal thoughts

Anxious nervous tense 

Panic attacks (racing heart, breathless)

Chest pain 

Trembling jittery shaking

Irritability

Agitation (restlessness, hyperactivity)

Confusion or Cognitive Difficulties

Memory problems or forgetfulness (I'd forget my head if it weren't attached)

Mood Swings

Feeling detached or unreal

Nightmares

Flu-like aches and pains
Abdominal pain or cramps

Stomach bloating

Disequilibrium

Hung over or waterlogged feeling

Unsteady gait, poor coordination

Headache

Numbness burning tingling

Electric zap-like sensations in brain

Ringing or other noises in earas

Muscle cramps stiffness twitches

Tendon pain

When I look at this I've always thought that I was one of the ones who "got away lightly" but - I guess I've paid my dues.  (I'd rather not, but not much choice in the matter now!)

In 2017 only 12 symptoms:
Low Energy (fatigue lethargy malaise)

Trouble concentrating

Insomnia

Panic attacks (could be cardiovascular)

Irritability

Confusion or cognitive difficulties

Memory problems or forgetfulness (see above.  head.  attached.  Good thing.)
Unsteady gait, poor coordination (but that has improved!)

Headache (again, also improved!)

Ringing or other noises in ears (sadly, this may be worse)

Muscle cramps stiffness twitches

Tendon pain

 

I find it - um - a little disheartening that Glenmullen says that mild is 1-3 symptoms, and severe is 8-10 when most of us in here are in the double digits....

So there's a chronicle.

in 4 years time, I have less than half the symptoms I had before.  When I said I felt about 61% healed - that is accurate almost to a T!  

It takes time, and it's slow.  But healing happens.
 

 

OK, here's a good time to look and see how I'm going

 

2023 13 symptoms:

Worsened mood (thank you COVID & Governments)
Low Energy (fatigue, lethargy, malaise)

Trouble Concentrating (attention span of a chicken - a little better than a flea)

Suicidal thoughts

Trembling, jittery or shaking (like a mild vibration under my muscles)

Confusion or cognitive difficulties (how much have I lost? How much is "normal" aging?  How did I ever do the things I did?)

Feeling Detached or Unreal (thanks again COVID & mainstream media)

Sweats (but I live in Queensland - it's 37C which is 98 F with 60% humidity! Once I start the sweats, I'm done!)

Runny nose (allergies?)

Abdominal pain or cramps (surgery ruined my rectum, drugs ruined my bowel - this gets harder to live with, and can cause....)

Nausea (when the cramps get so bad, the whole belly is unhappy)

Headache (DAILY - tied into misalignment of my neck, working on this with a physio)

Ringing in the ears (relentless tinnitus)

Restless legs? (I put a question mark here - my legs bounce a lot while awake, but it doesn't interfere with anything)

 

I don't think I've gotten worse since 2017, just older.  What's new is how hard it is for my bowels to work.  Floppy bowel combined with a surgically ruined rectum just makes my whole life harder.  Sometimes it takes all day to clear, and I spend the day running to the toilet to let a little more out.

 

The headaches started sometimes during COVID - when I got my knee surgery done & had to correct my gait.  They may or may not be linked, but they have been cruel and relentless for about 2 years - getting better with Watson Physio neck adjustments.  Went from 20 painkillers a month (that's all they give you here) to 5.  So getting better, but there's still anxiety, because once it starts, it's hard to back down from, and I become useless.

 

The other thing new is the "restless" "vibrational" nature of things.  I'm low energy, but have this vibration underneath my muscles.  Is it normal?  Is it damage?   I feel very strongly that if this vibration weren't there, I wouldn't be so tired all the time.

So - getting better is really slow, and I may have achieved an equilibrium, where aging is overtaking my former symptoms.  We'll never know the true damage caused by the drugs, the surgeries, and the selfish traumatic dramatic life I chose.

Thank heavens for tai chi!  (and Watson physiotherapy - he's American or Canadian - and has a different approach to headaches and pain)

[JanCarol]

On 4/19/2018 at 8:08 PM, Shep said:

I've been using Arnold Mindell's concept of letting go of personal history.

5 years ago!  (and I'm still learning from you Shep!)

 

Carolyn Myss talks about this like  "whodunnit."  You can devote all your energy to solving the whodunnit, dredging up all your trauma and victimhood and finding someone to blame for your victimhood.  The Whodunnit of most therapy is a bottomless pit, you can do it forever.  Dredge it up, sort through it, sift and sieve, and then you have another layer of Whodunnit beneath that, and the process starts again.

 

Instead, she talks about the Personal and the Impersonal.  The Personal may be suffering, but the Impersonal never is.  All traumas are Personal and Impersonal.  Impersonal because, it happens because it happens, and it happened to you because it happens to anyone.  Personal because it happened to you.

 

So she steps back into the Impersonal - what I described above as Neutrality, Self, That, Observer, Witness, to process what happens to the personal.

[JanCarol]

Also 5 years late, I'm "curating" my thread today.

I wrote, and Bubbles followed up:

Quote

sted July 28, 2018 · IP 

  Quote

I was talking to a friend over lunch, she had dropped off from 1/4 dose of her SSRI a month ago.  I warned her that - the symptoms of withdrawal take many months to work out.  I don't know how well she heard me ("I'm fine, I'll be right as rain" I hear this a lot, until it's no longer "right as rain"), but I told her to give herself permission to have symptoms for up to 3 years. 

 

I saw this in another thread, but thought I'd respond to it here. How did she take that 3 years? Was it doctor recommended?

 

5 years on, she is still drugged.  I wrote up a little fact sheet about parabolic tapering & receptors - the patient presented my fact sheet to her doctor, whose eyes went wide, "where did you get this?"

However, all tapers proposed by medical professionals were too extreme.  That, coupled with the stressors in her life (loss of custody of a child, loss of house & job, badgering by ex who turned her children against her, etc.) - and she's still drugged.

She is on a different drug, which means she might have gotten off the Paxil, but is now on Lexapro.  And we've talked about taking a retreat together when she gets off the drug (next year sometime?) - but I fear her plan is too rapid.  People trust their doctors, and "cut it in half, then quit" is still out there.  She's planning on going slower than that - but - probably not 10%, like we recommend at SA.

If any of you know Aussies, she's a "she'll be right, mate" kinda person.  (even when she's not right).

 

[Shep]

On 4/19/2018 at 6:08 AM, Shep said:

I've been using Arnold Mindell's concept of letting go of personal history.

 

3 hours ago, JanCarol said:

5 years ago!  (and I'm still learning from you Shep!)

 

Wow, there's a blast from the past! I hadn't thought about Mindell's writings for a long time. Thanks for mentioning this. He was such a powerful help during my journey. 

 

3 hours ago, JanCarol said:

Instead, she talks about the Personal and the Impersonal.  The Personal may be suffering, but the Impersonal never is.  All traumas are Personal and Impersonal.  Impersonal because, it happens because it happens, and it happened to you because it happens to anyone.  Personal because it happened to you.

 

So she steps back into the Impersonal - what I described above as Neutrality, Self, That, Observer, Witness, to process what happens to the personal.

 

Very nice post, JC. The reason DP/DR can be such a powerful teacher and guide is because it lends itself nicely to The Observer. 

 

This is a great addition to the Arnold Mindell concept. Thanks for posting these connections. 

 

[Shep]

6 hours ago, JanCarol said:

Thank heavens for tai chi!  (and Watson physiotherapy - he's American or Canadian - and has a different approach to headaches and pain)

 

I wish it wasn't still a difficult journey for you, but you amaze me with your many skills, abilities, and insights. Thank you for your update and sharing your journey with us. 

[JanCarol]

15 hours ago, Shep said:

I wish it wasn't still a difficult journey for you

 

Me, too.  When confronted with people with "real" disabilities - disabilities you can see.  People who cannot walk or drive, or who are reliant on others to bathe & toilet - and yet - they choose life.

 

If they can choose life, even though I look "normal" and my closest peeps know I have challenges - I can choose life, living, one-foot-in-front-of-the-other at a time!

Good to see you here, too, Shep!

[Rosetta]

Hi, Jan Carol,

 

I’m sorry to see that your are not feeling well.  You helped me through a very dark and terrifying time, and I will always be so grateful.  I do hope you feel some relief at times.  Please know you are such an amazing person, and we are all lucky to have you here.  
 

All my love, 

 

🧚‍♀️Rosetta

[Oaktree1]

Hi JanCarol

 

I too have benefited from your help and advice.  Sorry to use a colloquialism but I feel it  necessary even if I mix up the word - physical pain is a hctib - perhaps that word is misogynistic but even so the assonance is good.  Pain is tiring - energy and time is used up simply fighting it off or giving into it.  Gastrointestinal issues are a different kind of discomfort - equally exhausting.  I think you are already doing all you can. 

 

If I could suggest something from my own experience I think a few sessions with an Alexander teacher who primarily deal with gait and posture (and I think you are right your gait was thrown off after the knee surgery) I think that could help with the migraines.   I recently had a few classes with a teacher and he could see that I am walking with my legs inwardly and that I was not standing with my legs parallel and hip distance apart - this was putting pressure on the muscle of my groin and making my pain worse - it has much improved touching wood every where.  Alexander teachers are trained to notice how people move and how they sit at rest and to help you notice postural habits and correct them yourself - things that you might be unconscious of - it could be worth a try anyway.

I have attached a link to two teachers in Brisbane anyway.

http://meanswhereby.com.au/about-us/

 

Oaktree1

[Moonpie]

@JanCarol Hello! I am  So sorry to hear you are struggling with so many symptoms still.  You have such courage. And are such a testimony to others. I will never forget since I've been on this site your kindness compassion and support. Wish there was something I could do to help you. HUGS ❤️

[JanCarol]

Hi all - 

 

Thank you so much for your kind words!  I didn't come to complain, but to curate my thread and catch up on stuff I had missed.

 

While doing that, I found my symptoms sheet from a few years back, and thought I'd update it.

 

I thought my symptoms list would be better!  It surprised me, too - because if you look at my life, I'm active.  I teach 6 classes a week, and take 2 classes a week (tai chi & karate).  I have an active social life, and a number of friends who would support me, even if they don't understand what I'm going through.  So I expected to see how much better I am.  That's why we take inventory.  Turns out, I'm about the same.

 

But I also know that I've hit a plateau.  The amazing leaps of healing are done, and everything now is incremental.  If eliminating carbs helps by 5%, I'll take it.  If tai chi helps by 20% - oh yeah!  When I add my toolkit up - practices, prayers, supplements, exercise, social activities - I'm living, I'm doing it.

 

From here on out, however, I do not expect to outrace aging.  It is hard to tell how much of my symptoms are from the drugs, or from surgeries, or even the % contribution that poor lifestyle habits (for most of my life) have done.  And the force that is "normal aging" (which may be somewhat accelerated in my case, after what I've been through) - is definitely natural decay.

 

Oaktree - thank you for the tips on Alexander.  I've wanted to do it since I was in my 20's (but found Feldenkrais instead, and did that).  Right now, I'm focused on the Watson Physio.  I can only stand so many medical appointments in my life, not prepared to add any.  (as I look at my medical list, I see I'm behind the 8-ball again:  need blood tests, mammogram, skin scan, and referral to my knee surgeon for annual exam.  sheesh!  They really get their hooks in you!)

I'm very satisfied with the Watson therapy - specifically for necks & headaches.  But I probably need to supplement that with some osteopathic work for my hips & spine.  (you're right, Alexander would address that!). 

I did look at your link and I don't like their faces!  They look strict/mean to me!  They are 40 mins drive (on a good day - traffic here really sux) away, and I can get there without going to City.  But I am not attracted to these people.  I'll keep them in mind, but if I can find Alexander from people who are closer, or more in line with me, I will consider it!

I'm still thinking about how to revitalise my voice, as I think this could do so much good.  I found a practitioner in the UK who blends vocal therapy with singing coaching - over Zoom.  I'm not sure how this would work.  I'm such a face-to-face person, I'm disgusted with telemedicine and zoom church and zoom seminars.  I know they became essential over lockdowns, but I'm an in-person person.  The telemedicine I've had has been shocking.  How do you know I am sick with this or that by just listening to my voice?  You didn't listen to my chest or sinuses.  Or even see my face.  My doctor-friend in the US complains about how to diagnose a person using a 3"x3" square of vision on her phone screen.  Very difficult to judge demeanor, skin tone, all of the things a doc looks at.

So I muddle along!

 

Thanks for coming by and visiting, and I hope you see the Sun today!

[JanCarol]

It's been nearly a year since my last update!

 

The neck / headaches are resolving (thank you Watson) and now I am suffering heel pain (like classic plantar fasciitis, but maybe connected to a toe I broke last year).  So I'm back to the shot doc for heel & elbow.  It's coming good, and often I wonder - if I didn't seek treatment, how long would it take to resolve?

But - I need my heel to teach classes, so I'm treating.  Lots of ice & little lidocaine patches overnight.  And the shots - this time they were PRP - platelet-rich-plasma.  He drew my own blood, spun it down, enriched the plasma, and used that in his lidocaine/saline injection.

 

My classes are becoming popular.  I'm starting to feel like - we're a team, we play together, and it's fun.  People keep coming back!  I could probably stand to add a session, but there is not enough Jan to go around.  With the heel, I'm skipping karate right now.  My recovery days are essential!

 

For my pain, I have become a cannabis patient.  (not for people in withdrawal!)  It's weird, and I kind of resent it.  The only way I can afford it is to make my own oil from the flower, and I am heavily reliant on it (which is why I resent it).  But it has reduced codeine / paracetamol / NSAID use, which is a plus, and - I'm able to function.  I don't like getting "stoned," makes me feel stupid, but taking the oil doesn't seem to do that.

 

My soap box today:

 

There is no such thing as "mental illness."

 

Yes, there is emotional distress.  But it's not your brain.  Or your nervous system.  It's your coping mechanisms, strategies, feelings that trip you up.

 

I'm reading an excellent book by Johann Hari:  "Lost Connections."  

 

He was on antidepressants when he started his research, so his first few chapters were about discovering - there is no "broken brain," and he spent time with Irving Kirsch.

 

He's decided that "mental illness," is not a thing - it's Lost Connections.  Connections to meaningful work, each other, community, nature, (I'm only halfway through the book, there's more!).

 

Please go to your library and get it!  Read it!  

 

Naomi Klein says, "I am utterly convinced that the more people read this book, the better off the world will be."

 

I agree.

 

AND - 

 

I hope you see the Sun today!

[Vancouver1986]

Quote

but remember - when you talk to doctors and friends - it's important to display that you are in control.  Even when you are suffering.  It's hard, but an essential part of not getting drugged more

 

I wish I had read this back in 2022. That's what happened to me. They swapped one mood-stabilizer for another. And they increased it two times in such a short-span. & I don't even know if it's worth it to slowly taper off of. It's not my priority right now.

 

Nobody understands the severe strain and stress that being passed around through the medical system & adding on medications **due to an original mis-communication with an ESL medical professional over the phone** or a new Dx without discussion & things snowballing out of control is like, unless they've been through it themselves. The amount of money spent on fuel to get to gas-lighting Doctors & voluntary hospitals admissions due to withdrawl symptoms or medications themselves making you unwell, missing work (ie: $) & shattering your reputation with your employer, missing time with your partner, stressing your partner out as they watch helplessly, etc. All for no good reason whatsoever.

 

Psychiatric medication withdrawal, adverse effects to Psychiatric medications & being stuck on medications for years because withdrawal is worse, and things snowballing out of control is by far the worst thing that's ever happened to me. Most Psychiatrists & Doctors haven't had that happen to them. & Doctors and Psychiatrists are most-likely not on any of these medications & **don't want to believe** (& downright deny, downplay, and gas-light you) how they do things to a human's physiology (iatrogenic injuries) and what it's like to experience "light" withdrawal symptoms.

[Marsha]

Hi JanCarol! Great to read your update.