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JanCarol

She WENT to see Robert Whitaker when he came to our town!  She is a gem, and I will add her as support - though - being "non prescribing" all she really knows is to apply her normal, CBT, "what can we do" stuff - she has no clues about magnesium for example, and wanted me to ask a chemist about tapering St. John's Wort (WTF?  I have better resources here! and I need to update hubby's taper info in the St. John's Wort thread) BUT and she hasn't signed the "No Harm" providers contract I gave her.  BUT - she does get it, and understands.  I'll update that, I think, when I see if she can get any results from pdoc, if it comes to that.

 

LOL Hubby was looking at the box of Thorazine on the table.  97 tablets left.  He said to me, "do you think these will be good to have around when I can't sleep?"  (hunh, I gave him informed consent about damage to brain, increased possibility of psychotic symptoms, EPS, the thorazine shuffle & drool, but he must have been too tired to take it in.) So I did it again:  Each tablet you take will kill a little bit of your brain.  ONLY for extreme circumstances.

 

He's still hiccupping, he didn't take any last night (but he should have) I gave him codeine, tylenol/paracetemol and soma, and he still had breakthrough hiccups at about 3 am.  BUT, I figure what I gave him last night wasn't brain damaging, and he had breakthrough hiccups the night before while on 75 mg Thorazine.

 

I did also give him some sympathy/empathy for my friends who are on hundreds of milligrams of neuroleptics, and polypharmacy layers of them.  I said to him:  SO, imagine how doped you feel right now, and how hungover you feel in the morning:  Her and Her (2 friends) are on 4-5 TIMES that dose, and multiple TYPES, to be maybe 10x what you are on now.  Whoaaaaaaaa, he said.

 

Got an ophthalmology appointment now.  I give thanks that while I'm anxious to go out and hate being in traffic, I do not have agoraphobia or overwhelmed symptoms when I do.  I can, I do.  I don't LIKE it, but I can do it.  Thankful.  Going to ask the ophthalmologist if sick kidneys can cause the shriveling of the gel of the eye that I'm experiencing - after all, it sounds like severe dehydration.  

 

Still haven't heard from pdoc.  SURELY she has the results by now.  That was Monday, this is Friday.   <_<

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JanCarol

Stoopid.  (smacks forehead).  Got in the car, put petrol/gas in it, and drove 30 min to the appointment to find out it's next week.  I think I'm ready for a holiday!   :D   (one coming up in just over a week's time!)

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JanCarol

Here's a little journey I've enjoyed.  Found it, then contacted the guy to find out he lives in the same City I do!  Good to know he's "around" and I might bump into him in a public place sometime.   Anyhow, this goes along with what I've come to believe about why humans are so different from one another, I learned it from "Messages from Michael" and "The Ra Material" in the 80's.  It's a theme that seems to repeat in channeled information.

 

By this, I do not recommend channeled information for answers.  I do not believe everything I hear in channeled information.  I do, however find it entertaining and pleasurable to think about, and so I share here.  If nothing else it's soothing to listen to his voice & the music and watch the hypnotic images go by!   ;)

 

Danny Searle's Soul Ages, Part One (there's more if you like it):

http://www.youtube.com/watch?v=CHj1OsSMd_c&index=2&list=PL922005CA53448124

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JanCarol

Great googly moogly!  I just had the sensation that a big hairy spider was spiralling up my legs.  First the right then spiralled over to the left, so fast it got up to my knees before I jumped up and started kicking around.

 

thing is, this is autumn in Queensland.  Spider = likely.

 

But since then, my legs tingle as if every touch had been a sting, and I know that's not how it works.  Shudder.  It was likely a spider.  And I was trying to wind down for sleeping, too......

 

(I'm not scared of spiders, I usually like them in the house, keep the flies and mosquitoes down.  But spiralling up my legs is a bit intense.)

 

So not a withdrawal symptom, though, my ability to still feel it now after my adrenaline has fired is intense enough to be.

 

Surely the chances of that happening again in the same place on the same night is slim?  

 

I won't post a picture of a Huntsman, here.  It's like an American Wolf Spider, only bigger and not quite as furry.

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Meimeiquest

I hate when that happens! I read once that on average people swallow 3 spiders in their lifetime....they crawl in the mouth while someone is sleeping. But how could that be studied??? Sweet dreams :)

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JanCarol

No call from pdoc.  Not sure what that means.  Maybe she is studying how to write a compounding pharmacy script?  (in my dreams)

 

The blood work was cc'd my GP.  I haven't heard from her, either, which tells me there's nothing alarming in there.  Nothing outside of "normal" but I hate those charts and graphs, if my kidney function is DROPPING (even if it is in the normal range) I want to know so I can act accordingly!

 

I worked a bit on a plan D.  What if I cannot get pdoc to help me taper the lithium?  What if my GP will not either?  What if (insert unknown "natural doc" here) won't do it either?  (I've got 2 potentials - one for orthomolecular medicine, one from a "women's clinic" who have MD's and naturopaths working as a team.

 

Plan D is I do the math and buy a jeweler's scale, and grind up the powder and make up my own doses.  OMFG what a hassle.  I did a spreadsheet in Excel which said that at the end of 1 year of tapering, I would still be taking 1/3 dose.  And that it might take another 3 years to get that down to the last crumb, if need be.  Because 10% of the remainder has an infinite remainder, at some point you have to say, "Quit."

 

The chart was very intimidating, and the thought of grinding tablets and making a mess getting the stuff on my fingers or tools and blah blah blah.  I'm also not soothed by the prospect of making a liquid suspension and being able to dose accurately with that.  I'd need help from hubby (a maths expert) and I'm also unsure about my discipline in taking so many drops so many times a day (to mimic the long acting thing).  I find I can do 2 doses a day of anything, accurately, faithfully.  you add a 3rd one, and I start to miss things.

 

Headaches and allergies today.  But I've decided firmly that karate is a core piece in my wellness plan, and it is non negotiable.  I just have to learn to like it again.  

 

I really really really want to taper next time.  And from what I've been reading about tapering lithium (there is so little info out there) I need to use a monthly schedule rather than a 3-week schedule for lithium.  If I don't hear from pdoc, I will taper the reboxetine.  No meltdowns or embarrassments allowed, or taper denied.

 

Maybe I can do it this time, because I'm not seeing pdoc until sometime in April.  And she seems to upset me.  She's part of the reason I didn't' taper this time.

 

Actually it's not just her.  It's when more than one thing seems to pierce my frail bubble:  pdoc, Gung Ho Tony, news about my house in Indiana or financial woes, headaches, allergies, and the woo-hoo kerfuffle over my hearing aids (big, painful, uncomfortable FAIL).  When things stack up, I start wobbling.

 

I acknowledge that I don't have near the pain of most people in here.  But I cherish the support available here for the problems I do have.

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Aria

Enjoyed reading your recent posts. Tapering does take time and I used calibrated cylinders to taper off a powdered drug. At first it looked too difficult (mixing, measuring, reductions, record keeping) but by the end of the week I could do it with ease. I asked a compounding pharmacist to help me and he did, showed me how to mix my drug up so the powder was evenly distributed. It sounds like you have a good therapist on board to help you along as you taper and that's super.

 

I had a hairy centipede in the house and my neighbor's son was more afraid of it than me. I helped him corner it with a plastic container and put it outside. ;)

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JanCarol

Well, looking at Plan C (a new, "natural" doc) it doesn't look too promising.  The Orthomolecular is only a naturopath and can not do anything with prescriptions.  I need an MD!

 

And the "Women's Doctor" really really wants to help me get pregnant and have babies, that's her specialty. Terrific if I want to get my Kegels under control (she has a special physio chair for this, I'm not sure I want to know about it!)  I'm not in that category (nowhere NEAR!), and would be having to educate her out of her comfort zone.  But her picture looks nice.  

 

There is one other possibility:  the local compounding pharmacy (which offers Anchor Thyroid, also - could be of help!) might be able to recommend a physician who is comfortable with the compounding process.  Last time I visited their site, I thought I got a recommended physician in the area - but I couldn't find it this time.  If it gets to Plan C, I will call and see what they recommend.

 

If I start with one who is comfortable with Anchor, I might be able to transition to Lithium Orotate, as well (if I still need any lithium at all).

 

Geez, I feel like I'm a heroin addict trying to get a fix in a strange town.  Only the laws which are against me are against ONLY me, not everyone else, regulations to ensure that I can never get off these da***d drugs.  It would be easier, I think, to get methadone, or even heroin.  Sheesh!

 

These are all still just plans.  Backup plans if/when what I have going on is no longer supporting my withdrawal.  I don't have a whole lot of hope for Plan B because she is thinking I'm "untrustworthy" for going off the statins and refusing the CPAP.  She likely, as a VERY BUSY GP, to not have time to get educated on what I am trying to do, therefore I predict she will be of no help.  May I be wrong.

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Meimeiquest

Hi JC, I think you have a great opportunity with Plan A because of the kidney issue. If you have to go off the lithium one way or another, washing it out slowly to establish a clear need for a new drug would make sense to almost anyone. Would you like to just call the pdoc and ask what your creatinine level is?

 

You really can do this at home if you have to. Twice daily dosing would be fine...I just do three because I'm doing doses of other stuff all the time. Would she switch you to lithium carbonate, the immediate release version? That is what I've always used. It's a powder in a capsule.

 

It's the AD that worries me most. Maybe you could alternate cuts? And your sleep. Do you remember the darkness studies? Could you choose a schedule, any schedule, and just make yourself stay in the dark during that time? My sleeping comes and goes, but it is not being in bed when I need to be that messes me up. You've nailed the exercise, good for you on that! Anyway, I am thinking of you as I pass a crazy night. My family is gone for the week and our cats got out when I was taking the dog out at bedtime, and one hasn't come back. I keep coming down to look for him...this is a good example of how fragile I am with stress...normally I'd say "Good luck, stupid cat...I'll think about you tomorrow." Now I'm envisioning every awful scenario and telling my daughter....but I'm okay...just making 25mg cuts on the lithium. It will take a very long time!

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JanCarol

Oh MeiMei I would worry sick about that cat.  SLEEP?  With a cat out?  Though I'm stricter about "out time" for my cat - it's the "environmental thing" here to lock them up in the house at dusk so that native critters don't suffer.  But I feel your anxiety.  Nobody home, cat out, thank goodness for SA, right?

 

I'm working on the dark - got my blue blockers on now.  That's the most I can commit:  a walk in the sun first thing up,  and blue blocker sunglasses at the computer at night.  It helps, it's not "the answer" but it's better. 

 

Home powders is my last last last resort (plan D).  A mortar and pestle will make any lithium tablet a quick release powder.  Mine are tablets, and I have enough script for a year of tapers (unless I lie to pdoc until she catches me with blood levels!).  What then?  If I can get her to take me off (Plan A) I will be ecstatic.  I think for my next step, I am going to take my tapering schedule spreadsheet in to show her how gentle, how slow it is, and how we will have plenty of time to catch any problems as they fall out.  Depending on her reaction, my step after that is to sic my psychologist on her.  Get my team to team up FOR me instead of against me!

 

Plans B & C involve educating GP's, which feels like a cross between begging for my life, and bullying for what I want/need.  Because nobody has called, my kidneys are certainly "Normal" on a chart,  But what that doesn't tell me is how much has functioning dropped in the past 10 years?  It's still not enough information to go to my GP with.  I have to wait until Pdoc in April......

 

Yes, I could call.  I truly could.  But I have learned reserve from Australians.  If anything is wrong, they will call me.  If I call, it is perceived as pushy.  And I need to play nice, I need to be a "good girl" so that my requests don't seem so outrageous.  So I'll wait, and trust in the knowledge that 2 docs have seen the blood/urine tests, and haven't seen a need for alarm or to call me.  Whew!  Anxiety?  Yes, but somehow, faith, too.

 

Geez, you'd think I'd done a mass shooting or something the way they are so resistant to removing my meds. Or spent years and years in helpless hospitalization.  I've never hurt anyone, I've never hurt myself (other than from being foolish)  I've stayed out of hospital and mostly worked to earn my keep.   It's so dominant in the culture - the medical culture - the law enforcement culture (Sensei looks at me sideways when I tell him I'm having trouble with a "medicine" but they won't take me off it because it's a psych med, even though  I've never "gone troppo"  He has too much experience with subduing CT withdrawals who drink in public places and cause havoc to say, "you'll be fine, Jan"  He's an ex-cop.)

 

So yeah.  A little disparaged tonight.  Having serious lower back pain (related to the busted knee, says my acupuncturist), tired of fighting a thing I cannot talk about!  Thank heaven for my acupuncturist!  And for you, MeiMei!   :)

 

The AD - Reboxetine -  is my next taper.  Because of my limited tools at this time, it will be a 10% of total, not 10% of remainder.  But I think I've got a chance to do it and adjust.  The lower I can get that, the sooner I can work on the da** lithium!  That will be the next major event here, since I seem to be nice and stable with the acupuncture and attitude shift about the karate foolishness*. And hubby is better, lots better, even in  the face of great pressure, he will likely taper another 25% St. John's Wort on Sunday.

 

*I met someone today who was from the Italian Master's karate school, he was sending her pleading (harassing) texts and her daughter doesn't like Tony's bash'm up school, while her son does.  I said I didn't like it, but I'm not quitting - though I've considered Wing Chun (we have some authentic lineage schools here!)

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JanCarol

Emphasis:  Pdoc does not want to take me off of lithium (unless I"m totally toxic) without first putting me onto Lamotragine first.  Well heck, I've been over at GIaK's "Beyond Meds" site and I certainly don't want to put that into my brain and body!

 

It's amazing on Beyond Meds, GiaK has the patience of a saint, all these people writing in saying, "I've just done a really dumb thing and gone of anti-seizure medicine (Lamotragine) cold turkey what do I do?" and she patiently says to go back on because of the seizures and possible death and they want to argue with her!  One girl, she just told her to go to the ER right now!  I would never have the patience to do what Gia does - and I understand she no longer does it at that level anymore.  That, in and of itself, would be crazy making.

 

And the medical establishment.  (hmmmm.  thinking of it as an "establishment" instead of an "industry" or "profession") refuses to recognize these problems.  Including my Pdoc.  

 

It makes me burn, it does.

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Meimeiquest

Oh MeiMei I would worry sick about that cat.  SLEEP?  With a cat out?  Though I'm stricter about "out time" for my cat - it's the "environmental thing" here to lock them up in the house at dusk so that native critters don't suffer.  But I feel your anxiety.  Nobody home, cat out, thank goodness for SA, right?

 

 

Found cat at 4:50 AM. Then found 9 PM benzo and Toprol that I didn't take, almost half the day's benzo. I really frustrate me. Cat out last night again. They are so edgy because I am trying to get them moved to homemade cat food (long story) and they aren't eating.

 

I'm working on the dark - got my blue blockers on now.  That's the most I can commit:  a walk in the sun first thing up,  and blue blocker sunglasses at the computer at night.  It helps, it's not "the answer" but it's better. 

 

I am really, really impressed. Much more than baby steps.

 

Home powders is my last last last resort (plan D).  A mortar and pestle will make any lithium tablet a quick release powder.  Mine are tablets, and I have enough script for a year of tapers (unless I lie to pdoc until she catches me with blood levels!).  What then?  If I can get her to take me off (Plan A) I will be ecstatic.  I think for my next step, I am going to take my tapering schedule spreadsheet in to show her how gentle, how slow it is, and how we will have plenty of time to catch any problems as they fall out.  Depending on her reaction, my step after that is to sic my psychologist on her.  Get my team to team up FOR me instead of against me!

 

When you talk about Lamictal, does she want to taper you off it, or keep you on it for life? I am trying, trying to find out how lithium tapers go wrong. With AD tapers, almost no one suddenly becomes depressed to the point of suicide if they are tapering vs. CT. There are symptoms before the catastrophe. Are there markers that one is going too fast with lithium? I would take Lamictal except I know that it will make me TIRED. And I am tired out of my mind. I have emailed with a woman who has a blog about rebuilding her life after a failed 1+ year lithium taper (hospitalized at 400 mg) and have asked her for any thoughts she has about what went wrong...I will let you know if I learn anything.

 

Plans B & C involve educating GP's, which feels like a cross between begging for my life, and bullying for what I want/need.  Because nobody has called, my kidneys are certainly "Normal" on a chart,  But what that doesn't tell me is how much has functioning dropped in the past 10 years?  It's still not enough information to go to my GP with.  I have to wait until Pdoc in April......

 

Yes, I could call.  I truly could.  But I have learned reserve from Australians.  If anything is wrong, they will call me.  If I call, it is perceived as pushy.  And I need to play nice, I need to be a "good girl" so that my requests don't seem so outrageous.  So I'll wait, and trust in the knowledge that 2 docs have seen the blood/urine tests, and haven't seen a need for alarm or to call me.  Whew!  Anxiety?  Yes, but somehow, faith, too.

 

And it says a lot about your mental health that you can learn the ways of a new culture.

 

Geez, you'd think I'd done a mass shooting or something the way they are so resistant to removing my meds. Or spent years and years in helpless hospitalization.  I've never hurt anyone, I've never hurt myself (other than from being foolish)  I've stayed out of hospital and mostly worked to earn my keep.   It's so dominant in the culture - the medical culture - the law enforcement culture (Sensei looks at me sideways when I tell him I'm having trouble with a "medicine" but they won't take me off it because it's a psych med, even though  I've never "gone troppo"  He has too much experience with subduing CT withdrawals who drink in public places and cause havoc to say, "you'll be fine, Jan"  He's an ex-cop.)

 

That is how I got to a BP of 200/110 in the doctor's office when my benzo was re calibrating My docs were like the professional negotiators in a hostage situation...just keep her calm and keep her from going CT. But the nurses were a whole different story. I wanted to wear a sign saying No Gun No Explosives I Promise Not To Hurt You.

 

So yeah.  A little disparaged tonight.  Having serious lower back pain (related to the busted knee, says my acupuncturist), tired of fighting a thing I cannot talk about!  Thank heaven for my acupuncturist!  And for you, MeiMei!   :)

 

Thank you for you!

 

The AD - Reboxetine -  is my next taper.  Because of my limited tools at this time, it will be a 10% of total, not 10% of remainder.  But I think I've got a chance to do it and adjust.  The lower I can get that, the sooner I can work on the da** lithium!  That will be the next major event here, since I seem to be nice and stable with the acupuncture and attitude shift about the karate foolishness*. And hubby is better, lots better, even in  the face of great pressure, he will likely taper another 25% St. John's Wort on Sunday.

 

Very, very good!

 

 

*I met someone today who was from the Italian Master's karate school, he was sending her pleading (harassing) texts and her daughter doesn't like Tony's bash'm up school, while her son does.  I said I didn't like it, but I'm not quitting - though I've considered Wing Chun (we have some authentic lineage schools here!)

Have you ever heard if Zumba? Just kidding :)

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JanCarol

LOL Zumba!  Sounds like something you'd do on Sesame Street!  I have a friend who's done it, says it's fun.  But I would likely have the same problem there as with any aerobic activity like dance:  keeping up, and the dangers of twisting a knee on a fast turn.

 

There's something around here called Gaia Dance, taught by a yogini where I might actually meet people I like. I have a dear friend who goes.   The Gaia dance is about self esteem, self expression, and cherishing your Inner Goddess.  Whoa, that's a challenge for a WD girl!    I'd consider that one night and yoga another. Might even be able to get hubby to come to the yoga.  (oh! Oh! oh! Have you seen Yoga for Depression?  We are getting the download and burning to disk)  But that's desperate talk.  That's if I completely fail and meltdown and NEVER RETURN to karate.  I've only been doing the karate for 10 years now . . . I'm one of those loyal Taurus sorts, have difficulty switching paddocks.   ;)

 

Lamictal?  Oh, that's for LIFE.  I can't be an unregulated bipolar now, can I?  (figuratively bangs head against wall)  The only way she is happy to remove one mood stabilizer is to add another one.  THEN she'll take me off lithium.  BUT ARGH, have you read the lamictal withdrawal stories?  I was reading GiaK's thread on Lamictal Withdrawal from Hell (she has 3 major threads on it).  OMFG.  (put's on Amy Winehouse voice) "They tried to make me take Lamictal, but I said NO NO NO"

 

Please, do let me know about your friend/acquaintance who crashed on lithium WD.  I'm planning on holding a lot on lithium.  And it's still depressing that the withdrawal schedule - if done quickly and methodically - could take 5 years.  But I figure if I have to updose, I might hang there for a long long time before continuing a taper.  As I see it, a lithium withdrawal would be sneaky - because of its neuroprotective nature, you might not notice anything until it's too late.  My goal is not necessarily to eliminate the lithium, as much as I want to, but to take the lowest possible dose.  Maybe going to lithium orotate if needed (and possible, depending on Australian Law around that supplement)

 

THE GOOD NEWS IS OMG!  For plan C!  I had read the pracitioners list that Alto has put up, but there's a new one there since I read it last:  IN MY CITY!  Rob Purssey, ACT clinic, mindfulness therapies.  I'm not really keen on switching therapists or doing a "program" but he is a psychiatrist who can subscribe and who GETS Mad In America and GETS what Alto has posted there and ASKED to be put on Alto's list of practitioners!  This is truly exciting.  The neighborhood isn't close or anything, but it's not any more painful than going to City (just on the other side of City except I can drive because they have free parking at the clinic!).  And it's a LOT less painful than talking until I'm blue in the face about wanting off the drugs!

 

So, either this will give me the confidence I need to stand up to my current pdoc, or it will give me the confidence to fire her.  I will, of course, speak to Purssey before I fire her.  Hopefully if he is not experienced in tapers, he will be open to listening to my plans and helpful when it comes to prescribing for them.  HOPEFULLY he won't insist that I attend his ACT and mindfulness training, but if he does, ACT is something I've never done (I did mindfulness before it was "in") and seems to be the most in depth and useful of the 3-letter acronym treatments (CBT, DBT, ACT).   :P

 

So again, THANKS ALTO!!!  She goes around to all of these webpages and makes sure that wise taper advice is heard on all of them, and corrects people who need correcting.  Her efforts on our behalf are tireless (and tiring, I'm sure!).

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JanCarol

BTW, did I mention that both pdoc and psych have read Robert Whitaker's "Anatomy of an Epidemic?"  Psych was more positive, pdoc said, "well, you can lean and slant meta analyses...."

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Meimeiquest

Well, I heard from the lady. She said maybe consulting with people who had successful tapers who were more organized, more intelligent. Hmmm, our prescribers are usually very intelligent and organized. And going to a dr who is experienced in and supportive of lithium tapering. That would be fabulous...I doubt if there is one in my state. But maybe you have one??!

 

So I did a google search on lithium withdrawal failure. Not much, but I saw that people who clearly were tapering unwisely and were going to crash were having symptoms while they still were able to access a computer. It's that lack of notice that problems are ahead that scares me too. The dr. In England recommends a rate of 100mg/month. One study fiund lots of relapse, but it clustered in the first three months, implying people who weathered those storms and just stayed off did pretty well. Maybe a twisted meta-analysis :).

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JanCarol

MeiMei, I have to tell you about my fark up.  I had just come off my tricyclic, Prothieden 150mg.  Pdoc weaned me off 25 mg a month (which is conservative, considering what other pdocs out there do) (but not as conservative as we do it in here).  Smooth, no worries transition.

 

So I started coming off the lithium, 25% at a time.  I had taken away the first 25% (-225mg to 675mg - a HUGE jump for in here) and was on that for about a month when I FARKED UP and accidentally forgot to break my morning tablet in half.  I accidentally UPDOSED.  I had been going fine, but once I had updosed, she wasn't about to take it down again, especially since I was muttering about suicidal thoughts.  WHEN will pdocs realize that suicidal thoughts are something that many many many people have and do not act upon?  It's not even a malpractice issue here (it would be in the USA).  So she put me on the Reboxetine.  That's the last time I tell her everything.  because "bad thoughts" = more drugs.  Every time.  It's like being punished for feeling badly.

 

But that lithium taper - was going fine until I farked it up.

 

And I don't quite understand why she was willing to do it then, but is unwilling to do it now, when I'm doing well.  I guess I spoiled my opportunity with her.  :-(

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Meimeiquest

That "failure" would be totally irrelevant by standards here. Don't let it mess with you! Maybe she is approving your taper now because she knows you better.

 

I read somewhere that drops tend to take effect after about five days. And about five days after my last drop I started having somewhat dark thoughts that I just cannot do this withdrawing anymore, but I can't go back on meds, and my family would be better off without me...that is not at all normal for me. Anyone else would say they were a bit blue, but I am being very hyper vigilant about this....will hold, hold, hold. I really do feel like I'm crossing Niagara Falls on a tightrope. And marriage counseling, hopefully. My husband said it would be easier to be a single dad than running a household with me. This family system is stressed! Besides my issues, he has been underemployed for almost four years, and we are feeling it. Hmm , why do I post more on your page than mine? Sorry!

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JanCarol

Wow, Aria, I missed your post first time through.  Excellent advice, though I'm still not sure I'm smart enough for that.  Yes, I have mortar and pestle.  Graduated cylinder?  Do I put distilled water in with the powder to make a liquid?  On ebay, a "nice" appropriate cylinder was $30.  It sounds like yours dispenses as well, whereas I would just be estimating as I poured with this cylinder - unless I make liquid and do it with the eyedropper......

 

BTW - I would be fleeing from a centipede too.  Them are alien, and move fast and wriggly and (shudder) if there's not a husband around to fix it and take it outside, I'm leaving and staying in a motel for the night!

 

So this "graduated cylinder" information is very timely, as I'm finding it more difficult to be precise the smaller the reboxetine tablet is.  Is it a 7% cut? a 10% cut?  13 or 15% cut?  Not really sure, using my eyeballs and no specialized equipment.  These are the things I need to learn before I start messing with the lithium.

 

And MeiMei, I'm sorry you're struggling with your last cut.  I've had feelings like that nearly all my life - so if lithium withdrawal brought it up - I wouldn't be surprised.  What might surprise me about such feelings might be intensity and duration.  I'm so sorry about your husband, having his support is like, really important - but I "get" the underemployment thing.  I went from being high employment to underemployed to "barely can work" and I also know what underemployment is like.  My home in Indiana was in a University town, and we had more PhD's in janitorial services per capita there than anywhere in the world.  I went to look for a job, they wanted to give me half of what I was used to earning - in a smaller town in the styx - for the privelege of working in this college town.  "Be thankful you've got a job at all!" instead of "I'm worth more than that!"  And from what I've heard about the US economy and the shrinking middle class - I don't see any ways out of it easily.  Moving is one.  "settling for less" is another.

 

Counseling is good.  We've started doing the "Harville Hendrix Getting the Love you Want" series on video.  We are also supposed to have guided meditation tapes (we don't) accompanying guidebook (we don't) and exercise journal (nope, not that, either) but most of this stuff is available second hand and cheap on Amazon.  Our therapist was super impressed that we had started that (he's called the "Marriage whisperer") and while we don't buy into everything, it's giving us a consideration for each other, and topics for exploration and discussion that we can take off with.  We are not a "distressed marriage" so much as "unhappy people married to one another" but you might still benefit from it.

 

The thing about relationship - when you have been sick for a long time - is that for just a moment, you think about something outside yourself.  And those moments can expand.  But it's a two way street, and I still have moments when I'm saying to myself, "He wouldn't like this, but I like this or I feel neglected when I always do it his way" and that's not so good, either.  I'm a million times grateful that we don't have children to think about!

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JanCarol

Put another way (relationship):  He is most comfortable at 25 degrees ©, I am uncomfortable there, and more comfortable at 24 degrees C.  So how much time do I suffer at the temperature he is comfortable with?  
And how do I feel about making him suffer at the temperature I am comfortable with.  It's only one degree difference, but at the high number I am hot and sweating, and at the lower number he is cold and shivering.

 

Sometimes I just cannot take it anymore, and turn it down.  Sometimes he cannot take it anymore and turns it up.  He has the advantage most of the year because it takes more energy to produce the temperature that I seem to need.

 

(I was so relieved to find out that the neighbors like it at 23, which would be heaven for me, but 24 is like my "maximum comfortable" temperature.  I was also relieved that the range for the holiday accommodation was set so that it would only go 21 - 24, and would shut off if you tried to turn it above or below that range!  So I am more normal on this one than he is.  But that doesn't ease his discomfort any less when I turn it down).

 

And there are a million relationship compromises that go this way.  I like spicy - he used to but cannot (CPAP gave him a permanent mouth condition) anymore.  He likes to mix up fruits and veggies and have things for breakfast that I cannot face first thing in the morning.  He likes to bike ride, I like karate.  I love to watch sci-fi, fantasy, stupid comedy.  He really is very much limited to drama, with a little action thrown in.  It's always a compromise, and I'm sure that we are no different to any other couple.  If we loved ALL of the same things, I'd worry about us.

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Aria

JC,

I ordered my calibrated cylinders online from a school supply company. I got several sizes, 25, 50, 100 and 200 ml. I could have gotten one but went with four. I mixed my powdered benzo in a compounded pharmacy suspension agent that held the powered evenly mixed throughout for careful reductions. Most compounding pharmacy's will made up you a batch of suspension agent for a low price (I got 1200 ml for about $ 10.00) and you don't need a doctor's prescription for it.  If you're using a pill it needs to be crushed well and added the same (do not use a time release drug). I shook the benzo and fluid together by hand, do not mix it in a blender. I keep my reduction chart and every few days removed another one or two ml of mixed fluid. The fluid needed to be refrigerated and I used the mixture more than once (pharmacist said it had 3 weeks shelf live). Thought it was wasteful to throw good mixed benzo away when it could work for 3-5 more reductions. Once mixed I never added more benzo or fluid to it. It was easy once I got the hang of it and worked great for me. If you have more questions I'd be glad to answer them.

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JanCarol

Thanks Aria, for the first time I can *almost* visualize what you are saying.  I'm really really hoping it doesn't come to that, because precision is not my strong suit.  (I have a few things I'm good at, but precision isn't one of them).  Australia is a different animal, I'm a bit lost when it comes to "getting things" here.  Not the abundance that the USA has.  But Owsley moved here, so the scientific wares must be adequate (and he lived in the styx, so it must be available by post.)  I will go to talk to the compound chemist some time.  I wonder if distilled water (which doesn't have that magic compounding suspension property) needs refrigeration?

 

I've been meaning to post for a week, about how I *felt* on my holiday.  That feeling is no longer timely. After discussion with therapist, and a few cancelled karate classes, I've decided to reach out and try some yoga and Gaia Dance instead.  I did Gaia Dance on Saturday, and found that it stirred some things I wasn't aware of.  It's a very safe space to explore my body and relationship to it.  Tomorrow I get a private yoga lesson from one of the Gaia Dance coordinators, to see if she is "my" yoga teacher.  Then all that remains is to split my week between Yoga and Karate (with less emphasis on karate, since it is obviously causing more stress than it relieves).

 

Terror at doing a new thing, going to a new place, but at least I've already met the yoga lady.  And I feel safe there.

 

I just hope it is enough to get my body better instead of worse.

 

I'll try and post more tomorrow.  Tired, now.

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Aria

JC,

I didn't think I could do the mixing and the reductions but to my surprise I did. The suspension agent held the benzo power (had consistency like jello, comes in various thicknesses) so the power was evenly distributed. My benzo was such a fine powder it wouldn't mix with water and so once I stopping shaking it the powder fell to the bottom of the tube. There was no way I could get a reliable mix or reduction with it. Ask the compounding pharmacist what would work well for you and if distilled water needs to be in the fridge (doubt it needs to). You could call around and see if a school or chemistry supply company had the calibrated cylinders?

 

Taking yoga sounds wonderful, restful. What is Gaia Dance?

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JanCarol

Hi Aria!  This is Queensland, if it can go bad, it needs refrigeration!  Maybe not so much in "winter" (which just means that people put blankets on their pools, and we close the windows) but things go off here that I never dreamed of.  Candles in storage, flow.  Rubber bands dessicate at about 3x the rate they would in Indiana.  No point buying the "good ones," they just break down.  So I will probably need to refrigerate (grumble).  My Lithium is not a capsule, it's a tablet.  I will have to grind it in mortar and pestle, and it likely won't be as fine as your benzo.

 

I'm not going to act upon this yet, it's my plan D.  If/when I do, ebay is likely to be cheaper than any native supply source here.  Again, Aussies pay 3-5x more for goods and services.  I wish there were a place I could go to touch and handle the stuff to see what I can find.  I am going to the States later this year and could buy anything - but I still won't know if I'm going to get to plan D (I still haven't exhausted Plan A).  LOL "Little Miss FIrst Science Kit" might be just the thing!"   ;)

 

Gaia Dance is the invention of two women here - I'm really lucky to have access to this.  It starts with 20 min yoga, Then we get a 5 min dance "lesson" showing the energies we want to emphasize in the dance (in this one, it was pulling energy from the earth, bringing it through our bodies, moving it and then out through the crown of our heads to the sky), then about 20 min of dancing.  After that, we lie on our yoga mats for a guided meditation.  I couldn't hear properly so I just lay there "seeing" what I could understand, something about a mountain, the sky, a tree, becoming the tree, roots in the soil, branches in the heavens - echoing our dance.) 

 

One woman is a yoga teacher who got her start in aikido, and has a very strong sense of physical.  The other lady is a "women's group facilitator" and is more about the psych, archetypes, and spiritual aspects of things.

 

I was fine with the yoga (but weak, I haven't done it in awhile, and that's been my complaint in karate, too - no matter how hard I work, I can't seem to get to strong), and I wouldn't praise the dance highly - though I liked having guidance at the beginning of what she wanted us to gain from this dance, instead of a Grateful Dead free-for-all.  I did not relate to much of the music, I'm not an Aussie.  Some of it was trance style native drumbeats, some was pop music.  The other women seemed to know the words.  I had had enough and walked away (it was safe to do so, the yoga teacher just asked if I was okay,  I was.) just before the last song.  But I found things stirred in my solar plexus, in my root chakra, and just a tickle of stirring in my heart which brought tears to my eyes.  I consider this a good thing, since lithium tends to dampen feelings.  I'd love for the feelings to be something besides sad, but that's okay - if sad is the first one I need to process and get integrate, then so be it.

 

Tonight is the first yoga session with the aikido/yoga lady (I wish she could instruct in aikido, I would ***love*** that and leave karate for a good teacher).  If we like her, we will sign up for her session.  The disadvantage to her is she does 8 weeks on, 2 weeks off.  And I need something ALL the time, essential to my survival from withdrawal and mental/emotional wellness.

 

So I have to keep the karate in the mix, just dedicate less to it.  So 1 night yoga, 1 night karate?  Or 2 nights yoga, 2 nights karate?  And then 2 nights karate when the yoga is on breaks.

 

Darn I hate change!

 

But I have another story to tell.  For clarity, I'll start a new post......

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JanCarol

So I'm down to roughly 1.6mg of Reboxetine.  I'm in the home stretch, under half.  I needed a refill, so went to the chemist.  She gave me a box and told me, "I'm sorry, this is my last box of this, and we won't be getting any more in.  It's been discontinued."

 

Well, this is Reboxetine, so I am not surprised.  I know it's already unused in the USA (which is usually happy to use any drug they can), and that it's fallen into disfavor in the UK with "Ineffective" and "side effects" studies in Europe.  Our Fearless Leader Alto pointed these things out to me.  BUT - I had to ask.  I wanted to hear the chemist say it.

 

"That's okay," I said innocently, "I'm tapering off of it anyway and only need the one box.  Can I ask - why?"

 

The chemist hesitated a moment, because obviously I'm on lithium and this one, I might be quite mad and volatile . . . don't you love the way people treat you when they know you are on psych meds? Then she took a deep breath and said, "Well, side effects, and it doesn't really work, anyway."  I smiled - "That's what I've been wanting to tell my doctor, thank you!"

 

It felt like a victory, even though nothing had changed.

 

I'll update my sig now.

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Petunia

Its good you managed to get that last box so you could continue with your taper.

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cymbaltawithdrawal5600

JC,

 

That was just awesome!

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Aria

JC,

Goodness, you're busy with exercising. I've watched the Australian series "Rain Shadow" and the sound track features Aussie group The Audreys (haunting tone). Is this similar to the type music prevalent in Australia?

 

Maybe get a calibrated cylinder and you'll have it whether you use it or not. I finally donated mine, I got my use out of it. I related to how the pharmacist answered you, knowing you were indeed on the psych meds. I haven't told any of my new friends about my old psych involvement and poly drugging. I listen to what they say (psychiatry/psych drugs) and then tell them my view point on the dangers of both without saying what I'd gone through.

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JanCarol

Hi Aria!  And CW and Petu!  Yes I am lucky I got the last box!  They probably only bought the stuff for me, anyway (small village)

 

Well, I'm not bad with the exercising for a fat old lady that sits at the computer a lot!  It's actually decreased now that I've given myself permission to skip karate if it doesn't "feel right."

 

I don't know what it popular here.  I used to listen to radio, current stuff, to "keep up" with culture.  But I found it grungy and depressing so I only listen to classical now.  Mind you, sometimes that is grungy and depressing, too!  So I always have a tape of something I enjoy on the ready.  TAPE.  My car is the last place I play cassettes!  Soon to change.....

 

My current plan:  

MUST go to my GP ASAP to look at Thyroid again.  My script is nearly out.  I'm going to take a braid of hair that I cut out of my hair 12 years ago as a gift - something of myself - to give to the man who is now my hubby.  And show her what my hair used to be like.  And tell her I want stuff.  Like T3 and/or NDT (I don't know what that is, but I've been talking on a local forum.  Australia has outlawed "Armor thyroid" for being unscientific, unstable, inconsistent, irregular - but I don't know what NDT is other than another thing from a compounding chemist.).  I will confess my little 50mg experiment.  (I added 50mg / day for 3 days a week for 3 weeks).

 

Then I take my taper chart to my pdoc, to show her how gentle this is and ask for LIQUID lithium.  The more I read about lithium the more I think it is time to come off it.  OK, it has been neuroprotective for 10 years, but it's eating my kidneys and nerves, and probably ate my thyroid, too.  Maybe I can do it with liquid or syrup lithium.  I still may need the cylinders to get it really precise, but okay.  I'll buy them when I need them.  I'm asking pdoc for ONE taper, the first taper, with intent to hold there for a long time, until I'm off the Reboxetine entirely.  

 

Wish me luck.  Both counts are about educating my doc to a way other than what they were taught in med school.  Or seminars.  Depending on how it goes with pdoc, I may have my psychologist go to bat for me, as well.  

 

I'm still getting what I want, so I'm not ready to switch, but that could change very very soon.

 

Thanks for tuning in!  Wish I had some Real News, but I'll probably have some bumps as I go through these two docs in the next 2 weeks.

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Meimeiquest

JC, I thought of you when I got my last lithium refill...first two side effects on paper were dry brittle hair, then thinning hair. Did you see my post on Mensah Medical? They do a lot of training in Australia. I can see you are fighting the good fight...carry on!

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Aria

I want to do a comprehensive blood workup to rule out certain things and need to know what specific ones to ask for (thyroid issues in my family). I don't want a run of the mill basic blood panel.

 

I like the old style music 80's and classical. Love harpsichords and Renaissance. I've been known to battle it out my car stereo cranking up Baroque when the car next to me was blasting rap. The Australian band The Audrey's music is soulful but sad in a bluegrass way. It fit the series "Rain Shadow" to a tee.

 

Lithium ruined my friend's kidneys and she has to see a specialist. I still have no idea why she was ever put on it?? Manic..her...no, never. Calibrated cylinders, call around and see if a place locally has them or can refer you to someone who does. Good luck educating your docs about your taper.

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JanCarol

Thanks Alto - Dr. Purssey is now my Plan B.  I was thrilled to find him on the site.  Even if I have to do whatever ACT! program or whatever his clinic does.  At least he would understand.

 

BUT - while there is nothing WRONG with my kidneys, they aren't performing at the top of the range, either.  I had one test below normal range.  

 

I presented to Pdoc today, bathed and clean hair and teeth, euthymic.  I talked about the joys of easing off karate and trying yoga, and that this is a good yoga teacher.

 

She said, based on my levels (.7 something) of lithium, and the kidney tests, she is fine with decreasing my lithium!  YAY!  She is moving me off the Sustained Release on to regular lithium, so I get a 16% cut just from that.  Additionally, the tablets are smaller dosages (250 instead of 450 mg each tablet), so it will be easier to make cuts in them.  I showed her my "taper chart" and this taper is 1.5 steps in (about 6 weeks taper all at once, but it's still the beginning).  This should ease some load on my kidneys.   By the time I see Pdoc again, I should be totally off the reboxetine.

 

Happy happy!  While I may need Purssey at some point, I'd prefer to stay the course with people who have known me for 12 years.

 

Next week I go to see my GP to see what she says about the kidneys and to tell her that the lithium is coming down, and ask about thyroid and check my cholesterol (since I've been taking herbs instead of statins) and check for diabetes.

 

Aria, do you know about http://www.stopthethyroidmadness.com ?  There are lists of tests:  TSH (only for hypopituitary), Free T4 and Free T3, Reverse T3, Thyroid Antibodies (anti-TPO and TgAb), Four iron labs: Ferritin, % saturation, TIBC, and Serum iron, Adrenal Cortisol levels, B012 and Folate, Vitamin D, Estrogen, Progesterone, Testosterone, Iodine (24 hour urine collection).  I joined a Thyroid support group for Australia on Facebook, and found a Doctor in my area who will be able to look at these if my GP refuses.

 

 I don't know how y'all fight these battles when you're getting symptoms and withdrawal and shocks and more symptoms.  My pdoc will only adjust me when I seem fine, and sometimes it seems like a real battle to get an adjustment - so I honor those of you who suffer intense symptoms AND have to fight the docs.  Because for me, thus far, that has been the biggest battle.  Docs DON'T LIKE "stuff you find on the internet."  Even if it is valid!

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JanCarol

PS, I am watching the documentary "Numb," and while I know it doesn't have a happy ending (I think he goes back on the meds) it enhances my sympathy of what folks on this site have been through.  And if Phil Lawrence had only come in here and learned about 10% tapers, updosing, holding, all of the Harm Reduction practices, I think he maybe would've stood a chance.

 

Anyhow, the film is compelling, and if anyone is suffering from Paxil/Seroxat/Arapax, it's a compassionate view of that painful journey.

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Aria

JC,

Thank you for the thyroid link, I'd wondered what comprehensive blood tests I should press for. The Adrenal Cortisol levels is of great interest to me.  If there is anything else that might be of use for evaluating please let me know. See what I've learned from across the ocean?

 

You're busy getting off of or lowering your meds, good for you''''

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JanCarol

Ah, MeiMei, I have quite a few possible contributors to the dry brittle hair.  Yes, the lithium is one of them.  Not having a thyroid is another.  Having had a hysterectomy is another.  3 strikes and my hair falls out!

 

Any thoughts on Sustained Release vs. not?  I've heard people get nauseous or other symptoms on NON SR Lithium.  Pdoc is switching me to Non-SR which comes in smaller tablets - which solves many of my taper problems - just using a tablet/4, I can make combinations of the 450 SR's (cut) and the 250's for at least the first 10 tapers!  Hubby is excited doing the maths.  (I'm glad SOMEone is!)   :P

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Meimeiquest

I am so excited for you! The only side effect I ever was aware of from lithium (always the short-acting after the first 30 days) was a slight hand tremor at times. But I recently updosed from 1025mg homemade liquid to 1200 (dose since 2006) after over-something from l-theanine, and I had a lot of nausea and fatigue. Went down to 1100mg homemade liquid and it immediately resolved. But I'm not sensitive to every milligram or anything :). I have decided to stop lithium there and focus on the other stuff. I think there is something yet to be figured out before I go off lithium, but don't know what it is.

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