success ☼ JanCarol: Reboxetine first, then lithium

[JanCarol]

Climbing back into the saddle again.  Kicked my butt out of the house for a "toning table" session.  It was good.  Made my 10 minute walk, too.

 

I have to keep moving, or else I'm going to rust in place like the Tin Jan.

 

It feels good today, even though I woke up extremely tired.  Soon, I will get a wristband for my fitbit so I can see what my quality of sleep is.  I do catch myself doing apneas, but geez, I'd sure hate to add ANOTHER thing to what I do to go to sleep.  Blindfold, hand support, earphones, bear for postural support, dental splint, and the list goes on.

 

One day (or less) at a time.

[peggy]

good for you Jan!

 

I bought a garmin vivosmart last week to track my activity - it also tracks sleep, but i don't know how accurate it is - last night it tells me my sleep finished at 4:17 - i did check my  phone for the time then, but went back to sleep until 6:30 - so not sure why it stopped it at 4:17.  

 

i do like having the step counter though - i have mine set for 10,000 step goal and most days i manage to get there even if i don't go for a walk.

[JanCarol]

Hey Peggy - I saw a video on YouTube about a girl who took her fitbit to a sleep study.  Basically, it was very accurate (and cheaper and easier to sleep at home!).  This is what sold me on the fitbit - plus, it can talk to computers as well as smartphones (I still don't have one).

 

Thanks for visiting!

[JanCarol]

TRUE CONFESSIONS:  I gave a TCA psych drug to my cat for a year - from 6 months to 18 months old.  Like teenager time.

 

It was because we were having difficulty getting cats from different backgrounds to blend in one household.  I thought:  it's just a TCA, not as strong as a tranquilizer or SSRI - and I did.  Dose.  Both.  Cats.

 

Just had to get that off my chest.

 

Long term effect, she's not the brightest cat.  Once the other cat was re-homed, she settled and I didn't dose her anymore.  Sigh.  You'd think I would've known better.

[peggy]

Hey Peggy - I saw a video on YouTube about a girl who took her fitbit to a sleep study.  Basically, it was very accurate (and cheaper and easier to sleep at home!).  This is what sold me on the fitbit - plus, it can talk to computers as well as smartphones (I still don't have one).

 

Thanks for visiting!

 

well, that is good news! - i am sleeping better than i thought!

[Meimeiquest]

I came to look up your page...I am trying to decide what to do about my terror of a patient's mom's driving. I wondered why she had so many narcolepsy-like episodes until she took a nap on the couch one day....sleep apnea out the wazoo. She is at such great risk of falling asleep driving, and there I am in the back seat with her baby trying to act professional and think of something engaging to say as we near a curve on the interstate and her eyelids are dropping. I know you will have some cute comeback and I need it!

 

Do they have dental appliances for OSA in Australia? What if it is the cause of your adrenal fatigue? The problem is, your concern about losing muscle tone seems quite valid to me. And I understand feeling like you're putting on battle gear to sleep...dental guard (just saw new hygienist who said my teeth were full of cracks in the surface, thank you benzo taper), body pillow, CPAP mask, yellow night light, aluminum foil on windows, radio (my husband loves sound on in room while sleeping). I would wear an eye mask but it doesn't fit with my new CPAP mask. Sometimes I use ear plugs. 25 years ago as we married I wouldn't have believed it could come to this.

 

So I am doing my new "Enhancer" capsule with the Walsh protocol...oh la la. Pain, anxiety, insomnia out the wazoo. The nurse just said that copper causes mayhem both coming and going, just take what you can tolerate. I am supposed to take 2 capsules/day. I am "tolerating" 1/8 capsule/day. The symptoms mostly end about four hours in on that tiny dose, so I take it at bedtime...definitely impossible in the daytime while working, and sleep is so overrated. But I hope all that means it is accomplishing something. And so we carry on. I do hope this finds you in a big wave!

[JanCarol]

Oh Meimei - I just read about the detoxing "enhancer!"  It sounds like something I need - but oh, what a rough way to do it!  Supposedly, my little infrared lamp will do all the things that the Enhancer does, and it's gentle, pleasurable with only good effects.  Probably cheaper, too!

 

I've tried the dental appliance, it only works if I tape my mouth shut.  Even then, I'm capable of having an apnea with my mouth taped shut!  (a Buteyko breathing technique!)....but I fear the CPAP for reasons we've discussed, plus that "routine" and "armour up" before going to sleep....and if the CPAP negates my sleep mask, or my MP3, I don't know what I will do!

 

Sunday afternoon late, we realized our fridge/freezer was not cold enough.  We bought it used, 10 years ago!  (next week, I reach my 13th anniversary in Australia!)

 

So Sunday night was dedicated to research on features, reliability, efficiency, and we set out in the van yesterday to hunt and gather, bring home a fridge.  We did pretty well, only needed to visit 3 stores before we narrowed it down to 2.  We picked the larger of the two, also less likely to catch afire.  (I'm sorry, but once the Pintos started blowing up, I would never buy another Ford again.  The recall on these fridges was in 2003, but still.  They built those things!)  

 

THEN came the hard part.  The store loaded the fridge into the van, and it was up to hubby and me to wrassle the thing out, find out which door it was going in, wrangle it into position, pull the old one out, scratch the slate floor, move all the food, throw away all the awful things that we'd forgotten about in the back and bottom of the old fridge, and realized our freezer is not big enough!  Then we had to throw the old one outside a door where we didn't have a good path to put it in the van, and wrangle it into the van.

 

I wore protective gloves, but I'm still sore and tired 2 days later.  I made it to the toning table place today, where she gave me an infrared and red LED treatment on my knee.  We still have to take the old fridge (and the old stove and the old microwave) out to the tip.  I told him I didn't know if I was up to it, and mentioned hiring someone to help (it requires 2).  All of that throwing of refrigerators has made my hand and knee hurt.  Then I did a toning tables.  I didn't stand on the vibro-machine this time, I just sat on it.  

 

Sleep is horribly delayed.  If I have an appointment or meeting, I have to cut my sleep short, otherwise I could sleep until 2pm.  Not much I can get accomplished between 2 and 5pm when everything closes.....

 

So - not a wave, not quite a window.  I'm starting to get panicky about overseas trip, so many things to "make sure about" before we go.  I don't know how you regular overseas travelers just pop off somewhere for a week on a whim!  Egads!  We've been planning this thing for 6 months, and it still feels like it's coming up too fast!

[JanCarol]

Houston, we have a problem (you're likely right, MeiMei, thing is, what to DO about it?)

[peggy]

oh, my Jan - that looks AWFUL!

 

I have no idea what you can do about it except to try gradually bring your bedtime forward.  Logic would suggest that if you were to go to bed 15 minutes earlier each day or two, then eventually you will be on a better schedule of going to bed around 11 or 12...

 

maybe a bit of jet lag will sort you out 

[AliG]

 Hey Jan,  Should you have a sleep study ?  Maybe when you get back ??    Love & hugs,  Ali.

[freespirit]

Seems like a sleep study might be a good idea. I've had a CPAP for over 10 years..it did make a pretty big difference for me. I've had 5 or so different types of masks with it and have always been able to use a sleep mask as well...and also use my ipod every night. Yes, it feels a bit like armoring up sometimes...but actually being able to maintain proper sleep for me, overrides any of the other aspects. I'm hoping once I lose the rest of the weight I want to, that I might not need it anymore. Hope you can sort things out JC.

[JanCarol]

I've done a sleep study. I couldn't sleep - especially not during the hours they want me to sleep!  And they registered my sinus problems as "apneas."  The ONLY job of a sleep study is to find apneas and prescribe machines.  Kind of like the only job of psychiatrists is to find "disorders" and prescribe drugs.

 

That's why I got the Fitbit.  So I could see for myself, over time, build up some data, see if I can understand what makes it better or worse.  It's especially good since I am up for some serious jet lag next month.

 

 Um, the 15 minute earlier bedtime shift?  I've been trying that for 30 years.  Likewise the 15 minute earlier in the morning?  It just snaps back to this like a rubber band.  The hours are particularly bad right now.  (or, as my doctor-friend said, when a new practitioner suggested this plan to me, was (smacking forehead) "why didn't I think of that?")

 

The problem with a CPAP - there are lots of them.  Armoring.  More stuff around the "sleep ritual."  (did you know I got 890 steps in just GETTING READY FOR BED last night?)  Yes, I use an MP3 player to block out hubby's CPAP.  And a blindfold to focus inward.  And gloves on my hand, and tape and stalls on my wounded fingers. and a bruxism splint, a foam pillow for my knees, a soft sleeping knee brace and sometimes elbow brace.  

 

But I know of many people who can NEVER get off of CPAP - even when they've lost the weight and are no longer apnea'ing.  THEY BECOME ADDICTED, and you can't taper off of a CPAP like you can a drug.  It's a slippery slope!

 

On the other hand, this has been a real eye opener.  I had received a massage that day, and a hot tub.  I was on a little extra benadryl for itchiness, and that always makes my sleep a little bit better. 

 

I maybe have NEVER been depressed.  I may not have "adrenal fatigue," I may not even have "chronic fatigue," or anything - or, rather the adrenal fatigue and pyroluria stuff is all caused by this chronic lack of sleep.  I thought it would be somewhere in the 60-80% mark, not as bad as this.  Like I said - eye opener - maybe everything has been about the sleep.

 

YEP - jet lag helps, snaps my sleep schedule to daytime, sometimes for up to 3 months.  IF I lived near a sleep deprivation clinic (there is one in Chicago that I know of) I might check myself in a few times a year for a "correction."  I am not strong enough to do it on my own.  And supposedly, because of the "bipolar" thing - it's not SAFE for me to do so.  (I know, I would just get tired during the sleep dep and go to sleep and then get even more out of whack!)

 

Thanks for listening.  It's a thorny little knot.  LOL Ali:  Would YOU go to a sleep clinic?  Knowing that a CPAP was a sure fire prescription for you?  Even if you didn't know that?  Would you really?  Trust them that much?  It's another burgeoning business.  People slept for centuries without CPAPs.  Millenia.  Why are they so necessary for so many people now?  4-9% of population are diagnosed, and so many - like me - resist that diagnosis!

 

So likely, 15% of people need these thamn dings?  Really?

 

I have tried dental splints, I have tried taping my mouth closed.  I have tried yogic breathing (though I'm less regular with that lately, maybe I need to step up the "ujayi alternate nostril breathing" exercises.  I even tried Buteyko (Russian breathing technique) but it was a load of crock.  I may be running out of options.  I know if I show my Fitbit stats to any Western medical practitioner, they will send me "sleep clinic" way.  Hargh.

 

Thorny knot indeed.

 

What I hope to see is this:  when the jet lag helps my sleeping times, maybe my quality of sleep will improve, too?  When I'm sleeping more "normal" human-like hours?  Will my sleep after the long flight (13-15 hours, total travel time) be awesome?  Or apnea'd?  

 

At the very least I have learned that Fitbit is a marvellous tool.

 

Geez, no wonder I'm tired and slow!

[peggy]

yes, no wonder you are tired - maybe it's tied up with the allergies - my husband has bad allergies too and his sleep is terrible - mainly due to restless legs. He did a sleep study and there was no apnea. they wanted to prescribe requip ( a dopamine agonist) - i said NO WAY - you will just have to be tired (and so will I because when his restless legs are bad, so is my sleep)

 

if jet lag works for you - easy peasy, take a trip overseas every 3 months - now that is MY idea of a prescription.

 

I have a garmin vivosmart and the sleep monitor on that doesn't seem to be as good as the fitbit... or else i am sleeping better than i thought i was

[Meimeiquest]

Oh JC, that's so hard. Like a vicious cycle. I esp. hear you on not being an exit from CPAP. I saw, but didn't really read, an article by the Weston Price Foundation that claimed our poor nutrition is resulting in poorer genetic expression in how the palate and throat develop, so we are more vulnerable to sleep apnea than previous generations. No idea if that is true. I reread part of the Adrenal Reset Diet today as I am about to start ashwaganda (sp?). He really has a lot of helpful information about sleep in it. I am starting the ash. because pdoc thinks misaligned cortisol, which is a mild form of adrenal fatigue, may be the cause of my elevated fasting blood sugars. The mental wellness summit going on now was conceived by a man who believes lithium caused gut problems that caused massive heavy metal retention. I wonder if it was the opposite, that heavy metals caused his mania, but it is an interesting and disturbing thought.

 

I think all your objections are valid, but I would never have been able to go off drugs without CPAP.

 

Have a fabulous trip!

[JanCarol]

Wow MeiMei, that is a lot of information in a short paragraph!  Thanks!  So you are OFF the CPAP now?  And you have no apneas?

 

I heard a story about an apnea man (friend of a friend) who went on CPAP, but then lost a bunch of weight, and no longer has apneas.  But he will be on CPAP for the rest of his life.  There is no tapering from CPAP.  Sigh.

 

With hubby retired, an overseas trip 2x a year (enough to mess with sleep - as a hop to Thailand or NZ won't quite do it) might be do-able.  Then again, with hubby retired, we won't have the same income, and 1x a year will likely be the maximum.

 

But changing to night-time sleeping won't necessarily fix the apneas...

 

Oh the perils of being independently wealthy!  I wish I knew what they were.....  

[Meimeiquest]

I reread what I wrote....you'd think I was manic, lol.

 

No, I am still on CPAP. They redo sleep studies here every five years and with every 50 lbs. gained or lost. I have not achieved 50 lbs weight loss, heavy sigh, so it may not be till 2017. My apnea rate is 0.5/hr, nl is up to 5/hr. But I spend a lot of time on it not really sleeping, so it is probably not really 0.5.

 

Complete this sentence, If I were on CPAP the rest of my life, it would be horrible because......

For me, the bad part would be introducing it to a new romantic sleeping partner. With your husband having it, you know how very unromantic it is. But I'm not having any new partners...if my husband dies that part of my life will just be over. Earlier this year I got a new mask that is fabulous, it really doesn't bother me at all, except I can't wear an eye mask, but that was sort of irritating anyway.

 

But maybe you can find another solution, I so wish that for you. But the exhaustion and adrenal stress are real forces to be considered. It is widely believed that weight gain causes sleep apnea, and it surely doesn't help. But it is my understanding that prospective studies have shown that the apnea often precedes the weight gain, and the adrenal disruption from the apnea may actually cause the weight gain for some people. I would bet you at least a nickel that your sleep-cycle dysfunction is driven by the adrenal dysfunction. Which connects to your allergies. Which goes back to the gut. The root of all physical evil.... I am on, of all things, a parasite cleanse at the moment. Because it's cheaper than testing for it. My pdoc says he is amazed how many people get well after a parasite cleanse (although they usually get it properly diagnosed, unlike me).

[Meimeiquest]

In theory, CPAP could be tapered. It is set to deliver a certain amount of pressure, measured in cm of water pressure, and that could be gradually lowered. When you have successive sleep studies, what they are doing is reassessing how much pressure it takes to get the person to a normal apnea rate. I had two sleep studies because I was thought to be such a bad sleeper, in my mind. The first was just assessment, and the second was to determine therapy. The second sleep tech had sleep apnea, gained a lot of weight after an accident, then lost it. He had major adjustments in his pressure after gaining, and then after losing, weight.

[JanCarol]

The only adjustments I've ever seen (or heard of) in CPAP is up.  As your body gets used to, and homeostasizes to the pressure, it's like an addiction and must be increased?  So you know at least one person who has tapered off?

 

Okay.  It JUST HAPPENS that I see my GP tomorrow.  I will show her the fitbit.  I will tell her I don't know how I can do a sleep study because I don't sleep at night. (apparently, I don't even sleep in the morning, either!   ) I'll get a referral.  So it goes.

 

Until then, I'm going to double my vitamin D.  My blood serum is fine, but I do huddle in the dark, missing my sun-walks a lot - and it won't hurt.  (I downloaded a kindle book from Jeff Bowles called "The Miraculous Results of Extremely High Doses of Vitamin D - One man experiment")  I can safely go up to 100,000 IU for up to 3 weeks.  I can go on 10,000 IU indefinitely.  I'm on 6,000 IU now, so easy to double on next fill.  Especially since I can't possibly confront my sleep study and colonoscopy and WHAT NOT (who knows what will come up next?) before my travel. 

 

"I'll think about it tomorrow."  Meanwhile, more D.  More breathing exercises, and slap this fitbit to see if I can get some exercise going!

 

Yeah.  Weight.  Wait.  Same difference.  

[JanCarol]

OK changed the settings on the fitbit from "sensitive" to "normal" and it looks better.  Maybe even liveable.  Maybe just need to do research on the difference between "sensitive" and "normal,"

 

This is in bed for 7.5 hours (I have an appointment today), 6.5 hours sleep.  The big mess at 8 am is because of the dog next door barking his head off and me getting up to do something about it.....

[freespirit]

JC,

 

Which fitbit do you have? I'm looking at them, partly for activity and partly for sleep...just wondering about accuracy, especially given your very different results on normal and sensitive.

 

As far as testing goes, I was only given the O2 saturation monitor to take home and use at night--without and with the CPAP. It's a 2 year wait for an actual sleep study here and most docs will not refer for that. The O2 supposedly is a good demonstration of sleep apnea.

 

For me, the main thing was the results, more than the testing. My snoring had become so bad, that my wife was about ready to divorce me. She couldn't even sleep in the next room. She told me I stopped breathing often and even if she shook me, it took a bit before I started to breathe again. I felt so exhausted that I would almost cry about having to do a load of laundry. After a month on CPAP I was much better and within 6 months finally felt rested. If the initial doc had listened to me about exhaustion and sent me for the sleep study, instead of putting me on AD....well, I wouldn't have lost 10 years of my life and ended up where I did. Even if I have to be on it forever, to me, it's definitely not the worst thing.

 

The specialist that I saw then told me that he had seen many people lose weight and not need the CPAP anymore..and he expected that would be true for me. Unfortunately, with AD on board, I went the wrong direction with weight. Now that I've lost almost 50 pounds, maybe the pressures would be different.

 

Some people have only obstructive sleep apnea, while others have more central apnea...which is a problem in the brain. Weight loss would make no difference to that type. I have a mix of both, as many people do.

 

My machine has variable pressure, based on an overnight O2 I did a few years ago. The CPAP I have responds with pressure on a breath by breath basis. Sometimes, I can nap without it no problem..and other times, I wake myself repeatedly snoring. The health risks associated with apnea are pretty considerable, so for me, I'm willing to live with it at least for now.

 

I really appreciate your posts on my thread. I'm thinking about a lot of the things you said and will post a response soon. I was very touched by what you said about grief, my wife, and my being a part of this community. So thank you.

[JanCarol]

Hey Free, thanks for visiting. 

 

I just got the cheapest FitBit, the Flex.  I bought it secondhand, "in box" on ebay.  (it needed a clasp)  

 

It does not show apneas.  Only "restlessness."  For example, today, I was unsuccessful at "tapping it off" when I woke up - so it showed RED (activity) even though it was still measuring "sleep."  I suppose it will still "count steps" in my sleep - good for catching sleep walking, I guess!

 

I've heard the "losing weight" claim from doctors and practitioners, but I believe it is a fiction on the order of "you have a chemical imbalance" to say, "when you lose the weight you can go off the CPAP."  I don't know ANYONE that has been able to go off it once treatment started.  Even with massive weight loss.  

 

That said, it sounds like you really really needed it.  My husband had a stroke from apnea - so his CPAP saves his life every night.  Like your wife, when he is off the machine, I hear him stop breathing, and it is really frightening.  But he breathes when I wake him up.  But I couldn't tell him to go back on it (I tried) - he had to wait until he needed further surgery, and the docs looked at his records and said, "CPAP?  You need to have your CPAP treatment current before the surgery."  He's been sleeping much better (after increase in pressure, which was the whole problem - he became MORE dependant upon the machine, but interpreted the lack of pressure as "can't breathe," so quit using it for 1-2 years!)

 

In hospital, when he was post anaesthetic - you know, the period where they keep you on oxygen - the nurse said his CPAP was BETTER than oxygen for ensuring that he did well.

 

What I want to know is:  when did our brains decide to collapse our airways in sleep?

 

While camping (this was group camping - 150 people communally sharing meals and stuff) - we decided, while listening to a tent with a small male inside - listening to the snoring - that snoring was EXCELLENT defense against bears.  And great for scaring away wolves.   After all, even though the male inside the tent was small, and asleep, and vulnerable - the snores which came from the tent sounded HUGE and MONSTROUS.  It was a joke - but I do wonder about the evolutionary benefits of snoring and apneas.

[freespirit]

Thanks for letting me know about your fitbit. I'm still mulling over whether it's a good investment for me or not..more around activity than sleep. The winters are much more challenging in terms of wanting to exercise, so I'm always looking for additional motivation.

 

I had severe sleep apnea--meaning I stopped breathing and woke up more than 30 times/hour. When I had the pulse ox on, my saturation levels sometimes dipped down into the 70% mark. 95-99 % is considered normal. I think I had some degree of apnea for years...but since I lived alone for the most part, did not know what it was...and it did get worse as I started gaining weight.

 

I have my suspicions about how many people are diagnosed with this and that now too...but I think many people had it in the past, before it was fully recognized. My Mom had it and ended up with high blood pressure and heart disease...my uncle had it so bad that he'd fall asleep in the middle of a conversation. So maybe part of is just that it's more known now.

 

Sorry for hijacking your thread on this....I'm glad your husband went back to using the CPAP, as it seems it was critical for his health.

[AliG]

 Hi J.C.   Thanks for all your suggestions on my thread.   You obviously thought about it a lot.  Thank you , for that. I appreciate it a lot.   I might not always "act" on your suggestions, but I always think about whatever you're "proposing" , and consider it  thoroughly. 

 

Enjoy your time away, & hopefully we'll catch up  soon.  Love, Ali.

[JanCarol]

Hi Ali!  Thanks!  I get around so infrequently that I try to engage more caringly.  I'm glad you "got" that, sometimes I can't always tell if I'm being received "in spirit" or if people think I'm just hammering them when they are down.

 

Free - the best way to buy any fitness equipment is secondhand.  That said, I was looking on ebay at a fitbit - like mine - found on a beach.  No charger or dongle.  Just the device and wristband.  It started at US$15.  So I thought, I'd watch it.  Maybe if I could get it for under US$25 (I have dongle and charger) hubby could get one.

 

In the last 2 hours, it went from $15 to $50.  WTF?  A brand new one with all accessories is US $78!  I picked the fitbit because it is the only one that will talk to my PC (I don't have a smart phone) as well as my tablet.  The other brands require iOS (Apple) or Android.  Most of them don't even work for Windows.

 

Getting down to the wire on the trip.  Well, hubby doesn't think so, but he goes to City tomorrow for traveller's checks, etc.  I'm just lining up the actual details of who we will see and when and where.  That's kind of crazymaking all by itself.  To see, or not to see.  There's family I won't see - brothers and sisters and a mother.  And dear friends of decades - since before the first hit of Prozac! - ago that I just cannot drive out to see.  All "seeing" will be done in groups, which I hate, instead of small intimate things.  But I cherish what face time I get with my "old crowd." and some of the "new" members (thanks to facebook) of the "old crowd" share memories with me that may help me with some of my grief - mutual friends we have lost over the years.

 

I'm always uptight before a trip.  If you asked me up until I get in the car - I'd cancel a trip every time.  The last trip I was very sick for most of it (IBS, not fun to travel with).  How you "world travellers" do it, I shudder to think!

 

I'm planning to do a "symptom update" post.  Just not right now - it's been nearly 2 years more since I joined SA.  So many things are better, some things are different.  I'd have to say overall, estimating without making my list - there is not much that is WORSE than it was 2 years ago, except for maybe my hair falling out and my nails chipping curling, folding and peeling.

 

I do hope to stop in to SA as I can - I will try and have my "notes" with me, so I can keep track of "who's who" and "what's what" and "where to find that link on . . . . " but - we will not have steady internet for most of the trip, and from experience, McDonald's wi-fi ain't the greatest.  Plus, hubby will scold me if I spend too much time thinking about drugs and anti-drugs.  (it will be all I can do to hold my tongue around my friends - without seeing them, I will estimate that 30-40% of them will be on some psychoactive or another)

[JanCarol]

So here is a weird one, it's new, just this week (I have not tapered for a month)

 

You know when you go outside and play in the snow, and your shoes and socks get cold and wet.  It's not horribly cold out, but your feet turn pink, and it seems like FOR HOURS, they feel cold and wet, even when they are warm and dry?

 

Or a similar feeling if you stand in a cold mountain stream, and your socks get wet, and you wear them in your hiking boots and don't take them off until nightfall, and all night you feel like you have cool, wet feet?

 

My feet are warm, dry and tucked into wool socks and ugg boots - and it's not even cold out.  But that's how they feel, most of the time.  It's not like circulation or nerves (you know that cold, pins-and-needles thing?  Yeah, not that), so I don't think it's like parathesia or neuropathy.  What's really weird is the wet clammy feeling, even when my feet are warm and dry!

 

I'm sure my acupuncturist (who loves descriptions such as "cold" "wet" "hot" "dry" etc.) will have something to say about it.  She'll probably turn it around.

[peggy]

When do you leave Jan?  I send good travelling vibes to you....I love the excitement before going overseas, love the airport - hate the flight (unless we can get an upgrade to business) Although i can imagine that in your situation - going all that way to SEE friends and family and having to ration your time and be selective with whom you see would be quite stressful.

 

BTW, I didn't think anyone used travellers checks anymore!

[freespirit]

Happy Trails JC. Hope you enjoy your travels. I think a change of scenery can help give a different perspective of things.

 

Thanks for the tips on fitbit...I checked out some on ebay last night and will follow up with that.

[JanCarol]

Thanks Peggy!  I'll trade you - you give me the pre-trip excitement, and I'll share the good bits about the travelling!    Really, do you love the 24 hours travelling time?  It was 24 hours from his door to mine.  As we'll be stopping in California for a time, that will be more like 18, with 13 in the air over the Pacific.  Looking at a globe, the Pacific is a really HUGE great big ocean.  How the heck did anyone EVER find Tahiti?  Or Fiji?  

 

We have among the most conservatives banks in the world.  You know the GFC of 2008?  Didn't happen here; banking policies were a contributing factor.

 

 Traveller's checks are actually cheaper than the fees on our credit card AND our travel card.  EACH transaction, whether for a car, or lodging or just a meal or a coffee at Starbucks - cops a 1.5% fee.  We're comfortable, but not fabulously well-to-do, and he loves to count those pennies and percentages.  AND we need to have large amounts available to bail out my house again.  

 

I have extra special Oz-gifts to take to my friends.  I only regret that I couldn't get more - because it looks like I'll be seeing dozens of people while over there!  You know what I'm talking about !     Next up, we're going to get some kilos of macadamia nuts and put them in 250 and 500 gm gift bags - that's the ONE thing which is cheaper in Oz.  That, and raw sugar!  

 

OK on to that "improvement update."  Look out, there's hope on the way!

[JanCarol]

My taper was complex, and also involved statins, and PPI's (not depicted in my sig).  I got more improvement from discontinuing them, as I did from quitting Reboxetine, a useless SNRI.

 

When I signed on to SA, I was suffering kidney problems:  diabetes insipidus, having to pee every hour.  I could drink a thimble, and pee a cup.  It made sleeping difficult, at best.  It was accompanied by bladder pain, as my bladder would fill up, and I'd try to wait a LITTLE longer, but no.  I had to go then.

 

This is gone, and I credit that to the lower dose of lithium.

 

When I signed on to SA, I was anhedonia central.  Nothing mattered.  The only reason I was going off the drugs was I was so unhappy, and suffering from the drugs, too - I figured I could be unhappy without the drugs, and it would at least extend my life, such as it was.  

 

Upon leaving my statins, PPI, and tapering most of my lithium, I noticed that I was interested in things.  I started coloring again.  I watched youtube videos to learn about EVERYTHING, my native insatiable curiosity came alive and I realized, I am hungry to explore the world I live in.  What is life like in the ancient caves of Italy?  Why do Shintos in Japan offer rice to ancestors?  Which drugs are harder and easier in different categories of withdrawal and side effects?  Which champions (Whitaker, Healy, Breggin, Goetzche, Lucire) do I feel most akin to? What about Robin Williams death?  Was there occult significance to David Carradine's death?  What is the Bohemian Grove?  What do GMO's do, and how can we get them labeled in the USA?  What is the nutritional value of kale, quinoa, chia, kelp, sardines, and how can I incorporate them into my diet?  What are my dreams about and what do they mean for my personal life?  How can I grieve fully?  What is closure?    What is the cost/benefit formula for any number of supplements or procedures?  How do my chakra and shamanic studies tie into my psych studies?

 

The list of things I explore and am actively pursuing are endless.  Sometimes it feels quite random and almost purposeless, but it's almost driving, almost a motivation.  This ONE thing has made my life worthwhile, and has made my journey away from psych drugs valuable.  Maybe I'll never get off the lithium entirely - at least I've lost the rash, the diabetes insipidus, the pain, and all my tests are looking good again.

 

Tinnitus.  I had horrible tinnitus when I started, I still have it.  Before it was like crickets, and was not as intrusive.  Now the crickets have the high pitched hum of a generator, and a few other whistles and squeals, and it's pretty intrusive.  So somewhat worse.

 

Hair and nails:  were falling out before, are still falling out, even after thyroid and supplement adjustments.  I would say that the thinness of the hair shaft, and the ease of it falling off my head - are worse.  And my nails are peeling, curling, very thin and soft, more than before.  This is the ONE measurement that I would say is definitely worse than 2 years ago.

 

IBS:  Was so out of control 2 years ago.  I believe that the drugs ruined my gut.  I still have not healed.  But I have gained IBS "windows" - which, maybe like other withdrawal symptoms, are indications that my bowel is learning to re-regulate itself?  I still have symptoms, but am not suffering, and have a great deal more knowledge about what to do, how to help, when I am knocked down by this crippling symptom.

 

Sleep. I have always had delayed cycle sleep, and since reducing the lithium, it has gone to even later.  I was sleeping at 2 am - noon.  Now it is 4 am (or later) to 2 pm.  I have a fitbit and am using the silent alarms to "cue" me in and help me rein in this problem.  Additionally, the severe sleep deprivation of overseas travel traditionally "fixes" my sleep patterns for 2-3 months afterward.  So Sleep is worse.

 

Pain.  Pain is better in some ways, worse in others.  It's hard to blame that on withdrawal, as I injured my hand and lost the karate.  It's finally coming good, and I have hopes that, after the trip, I will be able to step in and do some karate again.  The reason I have more pain without it is, that the karate FORCED me to take magnesium baths (or I would suffer).  Now, I'm lackadaisical about it.  Also, the karate helped make me stronger, and I"m getting weaker.

 

Diabetes - was fairly under control 2 years ago - but now, with 10 months off karate, I am pre-diabetic again, gaining weight, have medium-high fasting blood sugar, so I have to watch things.  This needs to be seriously addressed when we return from our trip.  Again, the fitbit can help me track activity.

 

Cog Fog - clumsy - stupid things.  Yes, I still can't seem to wrap my head around difficult material, yes, I still bump into things and kick the cat (sorry!) and spill the water etc.  This may be, sadly, a lifelong thing I have to live with.  I was always "exuberant" and made big motions  before the psych drugs - lithium just added the "where is my body in space" syndrome, and I'm even clumsier.  With a good karate school, I might be able to recover some coordination.  BUT - my cognitive ability, while still far short of my "pre-drugged" state, is far better than it was in the depths of the drugs.  I can learn new things!  It is challenging, but I can do it!

 

ALL OF THE THINGS which are worse now than they were 2 years ago - when put in the balance with my insatiable curiosity and desire to learn and expand and grow and DO things - the things which are worse are FAR OUTWEIGHED by the things which are better.

 

It happens gradually - you think you are not really getting better, but if you look back across the months, you realize - you have gained so much ground, even though you did it 2 steps backward, 3 steps forward.....

 

Take heart, it can get better.

 

(caveat:  my withdrawal, being mostly lithium, statins, and ppis, will be largely different to most folks in here.  But still.  It can be done!)

[peggy]

wonderful update Jan.  I think you WILL get all the way off.  I hope you can flip your sleep schedule around - that would be something that I would find really hard to live with - unless you were to go get a night shift job somewhere!!!!

 

xxx

[JanCarol]

Yeah, how many night shift accountants do you know?  

 

I'm just a night shift house wife.  

[AliG]

Hi Jan

This was a comprehensive update of what you have been through, and also what are still issues, in your life. I think you have come a long way. Perhaps you're not fully where you want to be yet, but you're certainly " on your way ". It's always interesting to look back, and see where you have come from, and how many " strides"  forward you have made, in your life.  I think the main thing that comes across, for me, is that  somehow your "anhedonia", receded, to be replaced with a "native, insatiable curiosity", about the world, and how it works & your "exploration" of that, and how it all relates to you , as a "citizen" of this  planet. 

 

I see this as a "reawakening " of your soul.  I believe we lose that on this "poison".  It's so great to see that in you. That hunger to explore the world you live in.  I see it "coming back" in you, and I can only hope that my own "spark" comes back , as I also had a  curiosity & love of different places, travel & new experiences. 

 

You go girl !!

 

Love,  Ali.   

[JanCarol]

You are so right, Ali.  Plus I had some traumas which stripped all of my beliefs from me, and I'm having to rebuilt faith from scratch.  I had lost my faith when I submitted to the drugs (it's complicated, some practices believe that losing your faith is a key step to enlightenment; for me, it was disenchantment, anhedonia, and an existential crisis!), so my "loss of faith" was driven deeper by the drugs.

 

Curiosity is the key.  It makes me get up in the morning.  It drives me to try new things, even stupid things, to see:  to see a result, to see if this will help, to see what is right or wrong for me.

 

Getting my curiosity back was a HUGE breakthrough!  After that, I feel the rest is just physical health stuff ("just") but at least I have the motivation to work on it!

 

Even so, my "half empty" mindset, when I look at that post, I see that I wrote more about the negatives than the positives.  I hope I emphasized that the positives FAR OUTWEIGH the negatives of my recovery.

[AliG]

 Jan,

Even though there might be a few more physical negatives, I think what I saw in your post was the strides you have made in your outlook on life. Your cognitive ability, although not quite what it was before, is never the less, far better. You can learn new things !  It seems that the challenge of that is "invigorating" to you , which is totally understandable and very inspiring ! 

 

The main feeling that I  came away with, was that you have yourself back ,  in that you are curious about  life again & all that entails. You have a desire to expand your "horizons", follow your passions, learn about things that interest you  whilst expanding on the knowledge you already have. This growth fuels even more of a  "fire" in you to do &  experience more.

 

I hope I have that right. That's how I interpreted your post. I saw all the positives. 

 

You're very inspiring  & this gives a lot of hope to those of us here, who are still trying to  "reignite" that spark of life & curiosity, that sadly left some of us during this " perfect storm" of  "medication mayhem" !

 

I hope for your continued growth & healing,

 

Love,  Ali. .

[JanCarol]

Well, the flight was okay, one of the easier 13.5 hour flights I've had.  We had extra leg room at the bulkhead, and while I didn't sleep much, guess what?  I'm on the other side, in California, and was up at 6:30 am this morning!  And it felt good and right!

 

My fitbit is confused as heck, I'm trying to re-sync it to a different time zone, so my data at this time is screwy.  Additionally, my Friday was twice as long as others, but I had an extra days meds & supplements on the plane.  It's a good thing, because as soon as we landed I forgot to take any more for about 12 hours!  Back on schedule, now.

 

I HAD to eat all kinds of awful food on the plane.  Really, you're in the middle of a gawdawful long flight and they offer you a quiche in the middle of the night - am I going to say, "no thank you?"  I've been constantly chomping lact-eeze, ginger, and digestive enzymes.  I am a little queasy, and I ate a waffle today for breakfast (no!  No!!)  but I feel good, in spite of the chain dragging me back to the toilet too often.  Surely this cannot last more than a day or two?

 

(says she who has spent weeks in chronic distress, but I'm trying to keep the glass half full, and the bowels empty!)

 

[Waves at all her American SA friends]  The TV here is much more obnoxious than Australian TV.  I mean, really, TV is bad everywhere, but it's on in the breakky room, and well.

 

THe first thing I saw was a whale caught in a drag line.    The next thing I saw was a koala, asleep in the San Diego Zoo (wtf?  I come 8000 miles to see a koala, when they live in my backyard?), and the next thing I saw was a pharmaceutical ad lasting an entire minute long.  THAT caused great grief and pain.  My sympathies go out to American SA'rs who are subjected to these ads, they are AWFUL!

 

First concert tonight.  Meeting up with friends I haven't seen in nearly 15 years!  (and making new friends, of course)

 

[JanCarol]

OMG.  Deep empathy with all of you insomniacs out there.  Day of departure was 1-2 hours sleep for the next 36 hours, then, less than 6 hours sleep a night.  Each night it gets worse, I can be half awake and still feel my throat closing, it feels like apneas.

 

Last night I got 3 hours in 2 segments.  With maybe a few 10-15 minute catnaps around this.

 

This travelling thing is reminding me how nice it is to be in control of my environment.  I've been eating foods I don't normally eat (more wheat than usual, spots of cheese and dairy - but again - not a lot) - so I could be having histamine-like responses.  In the last 2 months I've gained 5 kilos (11 pounds) and that's enough to make a difference.  I really really need to work on that exercise thing.

 

For the trip, I'm looking over at things I've heard on my thread:  I've taken away the fat hotel pillow and rolled a towel for a neck roll.  More earplugs for the tiny bed in the tiny room next to the noisy huffing and wheezing of hubby's CPAP.  I'm actually (at this juncture) jealous of his CPAP - I'm in tears from the inability to sleep.

 

I have fears I will break down unless I start getting some sleep.  My friends - all of you who suffer this - I feel your pain.

 

I sussed out that there is a pull out bed which is bigger than the one in the bedroom!  I will try it tomorrow to see if I can sleep better with more room to toss and turn, no noisy CPAP next to me (Yes, I have the earplugs, the MP3), and I'll use the neck roll instead of the pillow.

 

The weight is gonna be harder to deal with.  This is America, after all, and there's more sugar and carbs here than in hell itself!

 

At least, 20 min south of here is a local slow food grocery, with local meats, seafood, fruit & veg, often supplied by the Sea Ranch community.  It was better than Whole Foods, and the prices aren't bad at all!  

 

Oh, and SWEET WALLA WALLA ONIONS!  Aussies don't know what an onion is until they've had a Vidalia or Walla Walla.  

 

Hopefully the hot tub, better food (now that we are on our own, and not meeting folks at restaurants so much), the exercise, the deep serenity of the Redwoods and the nourishing views of the coast - will aid my process.  Or - I will get so run down that I will eventually sleep....