Meimeiquest: my introduction

[Meimeiquest]

Thank you so much. I tried to start an even pattern today and felt so much worse (sedated). I think the only solution is to get off...I have gone off Zyprexa and then straight into a Wellbutrin taper as it was making me manic-y, and I am so not ready for another taper.

[Rhiannon]

You might find you could do a more even dosing pattern if you transitioned to it quite slowly, increasing your day doses by only a very small amount at a time while reducing the night dose by a very small amount as well.

 

You might find you could stabilize with a pattern that was not necessarily 100% even throughout, but something a little more balanced than what you're doing now. It seems like something worth experimenting with.

 

Fortunately( in your case) we do develop tolerance to benzos fairly quickly, so if you slowly and gradually increased your daytime dosing you might find the sedation would decrease.

 

I am very sensitive to diazepam metabolites, which I find tremendously sedating, so I get it! but I do develop tolerance over a couple of weeks and then the extreme sedation goes away.

[Meimeiquest]

With playing around with pills, I was one short before my benzo was due to be refilled. Decided to go to PCP since I am currently without a pdoc. My BP was 180/110! Pulse in the 90 s. I couldn't just say I was in sympathetic overdrive, so now I am on a beta-blocker. Cried 4 tissues between the nurse checking me and the doctor's arrival. I hate how these drugs unravel my dignity!

 

BUT, pulling myself together, I am glad if my BP was that high, it was discovered. And the pdoc I have "applied" to is the only pdoc my PCP refers to.

[Meimeiquest]

So I have "applied" for care from another pdoc, the one several have recommended to me. His office just called....he has reviewed my records and a brief email I sent, and he thinks I am too sick for his practice....

[Altostrata]

What does that mean??

[Meimeiquest]

That he won't take me. I don't know beyond that, except that he told his secretary that, yes, the scenario I proposed in my email could be correct. His secretary was just relaying his message. Everywhere I go to any doctor, I get the feeling that they think I'm just about to explode because I have BIPOLAR and I'm STOPPING MY MEDS.

[Altostrata]

You've given up on Dr. Allen?

[Meimeiquest]

Yes. I don't want to say more here. I have a call in to a dr. In Atlanta from the list.

[lexicon]

Mei, thinking of you ..

I am saddened that you are going through this ..Praying that all

will fall into place, and that you can find some peace.

Sending you love, and many hugs ..Lexi

[Meimeiquest]

We play this game at our house...What Would You Do?

 

3 years ago my husband's company went through a merger, which ended in his salary being cut by 1/3. He hasn't been able to find another job (but it is better than being unemployed). Things got progressively tighter until a little over a year ago I asked my pdoc if I was getting $10/day from Zyprexa. He laughed (would that he had said anything might happen if I stopped!). The physical symptoms of the taper made me very determined to get off, I figured it couldn't be relapse...but I also had a lot of psych symptoms. Exhausted family. Went straight into Wellbutrin taper as I quickly became manic without Zyprexa on board. I'm about 2.5 months off Wellbutrin, physical symptoms almost gone, would be restarting an AD for depression if I had any thoughts of psych meds solving anything, but I am well cured of that. Started into anxiety, etc. a bit back which I think is benzo tolerance, redistributed oxazepam to even dosing. Fine, except I can only sleep 3 hours at night...with a part-time job I need to keep, a physically and emotionally depleted spouse, two daughters who need lots of catch-up parenting from the Zyprexa years, and metabolic disorder/insulin resistance which is more potentially deadly than benzo addiction. My new PCP has agreed to take over my psych care, and we agreed that getting my physical health together is more important than getting off a benzo, in fact, he has put me on a beta blocker and metformin.

 

But I need to sleep. I can't even imagine how many hours I am off for this year. Acupuncture is an option, but paying for it is an issue, and I've already used way more than my share of the family's resources. What other choices? Increase the nighttime oxazepam back to 30mg, for a total of 50mg? How long would that even last, once you've started down the tolerance road? I keep thinking if I'm going to suffer I should at least start tapering to get something out of it, but I think of Alex's classic post about how things can always get worse.

 

So...what would you do?

[LisasLove]

Hello Mei,

How is the Sleep Apnea coming along are you still wearing your CPAP? A friend of mine had to have his pressure increased since his Sleep Apnea is getting worse. I have an Auto CPAP and it monitors the pressure I need. Some days it's as high as 10  cmH2O and then other days it only 6 cmH2O. I am wondering if any of your continued problems are related to you needing your CPAP set to a higher pressure or better yet have your Doctor prescribe you an Auto CPAP.

[Meimeiquest]

Hi LL, I don't know. I wear CPAP 100% of the time if I even might go to sleep. My settings are now 13 months old. My family says I don't snore. This is how my present insomnia works: I go to bed at 9. If no noise (sound sensitivity is the physical issue I still have....make a noise at the right time and I may not sleep all night), I will rest peacefully until I fall asleep about 10. Sleep totally soundly until 1 am and then calmly but completely come awake like it is morning, no cortisol rush. I stay in bed, awake with an active mind, no restlessness kind of rest, as long as I can. Usually around 4 am I start to feel restless, and it is uncomfortable to be in bed, so I get up. Take oxazepam at 5. In the rare instance that my schedule permits, I can sometimes go back to sleep after the oxazepam, but usually life's responsibilities have me going. Mornings are my best time for energy (using the term best quite loosely!) and then things start going downhill about 11a.m.

 

I was just on the sleep center's website yesterday. Didn't see any mention of auto-CPAP, have never heard of it. Have to say the South is not always an early adapter to change.

[LisasLove]

[LisasLove]

Hi LL, I don't know. I wear CPAP 100% of the time if I even might go to sleep. My settings are now 13 months old. My family says I don't snore. This is how my present insomnia works: I go to bed at 9. If no noise (sound sensitivity is the physical issue I still have....make a noise at the right time and I may not sleep all night), I will rest peacefully until I fall asleep about 10. Sleep totally soundly until 1 am and then calmly but completely come awake like it is morning, no cortisol rush. I stay in bed, awake with an active mind, no restlessness kind of rest, as long as I can. Usually around 4 am I start to feel restless, and it is uncomfortable to be in bed, so I get up. Take oxazepam at 5. In the rare instance that my schedule permits, I can sometimes go back to sleep after the oxazepam, but usually life's responsibilities have me going. Mornings are my best time for energy (using the term best quite loosely!) and then things start going downhill about 11a.m.I was just on the sleep center's website yesterday. Didn't see any mention of auto-CPAP, have never heard of it. Have to say the South is not always an early adapter to change.

 

That's awesome that you are wearing your CPAP 100% of time. There are so many people with Sleep Apnea that are non-compliant.

 

Your insomnia sounds like mine when I was going through Xanax withdrawal. I wish you the best.

[Meimeiquest]

Well, today marks 3 months off Wellbutrin for me. I've just come in from pulling out all the tomato plants...the seedlings that went in while I felt so sick and full of akathisia this spring. Lots of puréed tomato is in the freezer for spaghetti this winter. So I have a lot to be thankful for.

 

I had quite a round of anxiety, irritability, sound sensitivity, sympathetic arousal with hypertension, insomnia, but it is abating. I think I began metabolizing my benzo differently (faster) after the Wellbutrin cleared. These symptoms started when the chemical taste in my mouth went away...which had started when I went into major diarrhea during the Wellbutrin taper. Now I am dividing my benzo into 8 doses per day, but that is holding me for now. I still find volleyball games difficult from the noise, and I startle very easily. Sometimes I feel a bit nauseous, and the taste almost always comes back then.

 

The symptom that has dogged me for over a decade is still there...fatigue. Sometimes I am discouraged over that, but I don't think it is true depression. All in all, I think my post-taper is going well, but I won't feel like I'm home free till I make it past 18 months. And the minor issue of 2 more drugs...

[Altostrata]

Congratulations, meimei. You're out of the Wellbutrin woods!

[Meimeiquest]

Today marks 4 months off Wellbutrin. On a 10 scale, I'd say I'm 6 to 7, which I consider pretty good. Starting tiny taper of oxazepam.

 

Read article by pdoc about how over diagnosed and bogus bipolar II is, then realized he was the doctor who told me he didn't know me well enough in one visit to say for sure, but he thought I probably had bipolar II. So I have decided not to co-taper oxazepam and lithium. Doing more research, seems the key to non-drug management is structure. The Pomodoro Technique for ADD seems to help my energy level when I do it.

[Petunia]

Congratulations on being 4 months free of Wellbutrin, it sounds like you are ready to start your next taper, going slowly is good.

 

 The Pomodoro Technique for ADD seems to help my energy level when I do it.

 

I did something similar to this when I was studying, would set myself blocks of time for working, using a timer, and take forced breaks between.  It worked well for me too, focusing on smaller tasks for limited periods of time stopped me from becoming overwhelmed, feeling like I had to accomplish everything now.

[Meimeiquest]

Well, I have mucked things up. I started the Page diet two weeks ago. First week was good, more energy, clearer head, BP down to 106 systolic, dropped BP med in half. The second week fell apart...symptoms of unhappy GABA receptors that I had when it seemed my oxazepam levels dropped when I stopped the Wellbutrin, and just feeling crappy physical and emotionally. Had lithium level drawn Friday because I just feel strange. They could not find a vein, finally got it out of my hand, and I've never before been stuck more than once for lab wok. Very hopeless and irritable. I have a chemical taste in my mouth almost all the time that is not a ketosis taste...but sometimes tastes like Zyprexa or Wellbutrin...the taste changes. I think I have lost a little weight (I have gained 90 lbs. in the course of my medication/psych adventures), less than you'd think from just starting a low carb diet.

 

My totally unproven theory is that the diet is improving my liver function, so I'm clearing the oxazepam faster which is the same as taking less. Have to rule out the possibility that the lithium has caused some inflammation in the kidneys that the diet is helping, so clearing lithium faster (unlikely). And my fat is full of all these lipophyllic (sp?) drugs and releasing it is going to be really tough. Appreciate any thoughts.

[mammaP]

Hi Meimei, I'm sorry you are feeling bad. You say you cut your BP med by half, maybe it's 

caused some withdrawal? It's a complete guess, I don't know anything about it really but

when I tried to cut mine I had symptoms of withdrawal. It isn't the same as yours but I am

beginning to think that the body becomes used to anything that is taken regularly and

throws up all kinds of symptoms when it's intake is disturbed. 

I hope you are feeling better very soon.

[Meimeiquest]

That's good insight, Mamma P. It's a beta-blocker, so works on the nervous system. We carry on...

[Altostrata]

You have to taper beta-blockers!!!!!

[Meimeiquest]

I believe the smallest tablet for Toprol-XL is 25mg, which I was taking. It is extended release, so you can't randomly cut it or dissolve it, but it is scored for taking a half, 12.5 mg. So I went from 25 to 12.5. Should I do something different for the next cut, or just "jump off" from 12.5 when it is time?

[Altostrata]

If it's scored for taking a half, you can cut it up (or crush it) any way you want.

[Meimeiquest]

Sorry, that was a pathetic post...I've been through this much tapering and am stymied by an extended-release tablet??? Sometimes I just get tired of it all. The good news is that I'm more stable by the day.

[Altostrata]

That is good news, remember how you were when you started?

[Meimeiquest]

An average day's examples of why I am still concerned about my cognitive function. I am to pick one daughter up at 5, take her friends home, pick up another daughter, give her a clean shirt that needed washed for the party, and take her and friend to party.

 

First, daughter one calls from school: am I still going to pick her up? She knows mom forgets. Take dog (and me) for walk in park. Barefoot, carrying shoes in case the "earthing" gets uncomfortable. Sit down under tree to put shoes on. Walk another quarter of the trail, pick up dog poop and realize I am no longer carrying the shoe bag. Walk back to tree...no shoes are there. Finally realize they are on my feet. Come home, daughter two calls to see if I have remembered to wash her shirt. She knows mom forgets.

[mammaP]

Oh Meimei, you sound just like me!!

If it is any consolation my memory is getting better and I'm sure yours will too. 

 

One day I couldn't find my specs, and couldn't see to look for them. I was so frustrated, then found them,

they were on my nose! The weird part was that I actually thought I couldn't see to find them!

These drugs are responsible for more than will ever be acknowledged. 

 

Mamma hugs for you too, xx

[Meimeiquest]

Thanks Mamma! Maybe we'll end up in the same nursing home

[mammaP]

Haha, maybe we will 

[Nikki]

I am a member of this club too:)

[Meimeiquest]

Saw new pdoc yesterday. If I was looking for a regular pdoc I'd be thrilled. Jury is still out with my new perspective though. She is definitely concerned about withdrawal, says."Any drug can cause withdrawal." Hates lithium. Says I need to be re-diagnosed from the top, that bipolar II, GAD, and ADD are the hardest diagnoses to distinguish, and can also occur together. Very clear that taking meds is my choice, not hers. Wants me to do multiple blood sugar checks a day, says that to her a normal fasting blood sugar and Hgb A1C are irrelevant, she needs to know how much my blood sugar varies during the day. I am at least sure that she understands the brain and body are connected, which is not a concept embraced by all pdocs.

 

On memory, she says that my examples show that I am not forming memories adequately ("because you're not paying attention to your life"), and that this has nothing to do with dementia, where you can't access pre-existing memories.

[Rhiannon]

Saw new pdoc yesterday. If I was looking for a regular pdoc I'd be thrilled. Jury is still out with my new perspective though. She is definitely concerned about withdrawal, says."Any drug can cause withdrawal." Hates lithium. Says I need to be re-diagnosed from the top, that bipolar II, GAD, and ADD are the hardest diagnoses to distinguish, and can also occur together. Very clear that taking meds is my choice, not hers. Wants me to do multiple blood sugar checks a day, says that to her a normal fasting blood sugar and Hgb A1C are irrelevant, she needs to know how much my blood sugar varies during the day. I am at least sure that she understands the brain and body are connected, which is not a concept embraced by all pdocs.On memory, she says that my examples show that I am not forming memories adequately ("because you're not paying attention to your life"), and that this has nothing to do with dementia, where you can't access pre-existing memories.

 

Just want to say that "because you're not paying attention to your life" sounds a little like "blame the victim" and "make up some explanation" to me. These drugs interfere with neurological functions like memory formation in real and concrete ways.

 

I wouldn't be looking at the subtle stuff like "paying attention to your life" until after the really big blatant stuff like "taking drugs that screw up the chemical processes involved in laying down memories" is out of the way.

 

And I say this as the only person I know my age whose memory is improving steadily and consistently as my dosages of psych drugs decrease. I don't think I'm paying attention to my life differently than I was four years ago, when I was having so much trouble with learning and memory.

[Meimeiquest]

The "paying attention" is much more serious than that. She is under treatment for inattentive ADD herself and thinks I "reek" of it. She has DTC cards for gabapentin ER for INSOMNIA in her waiting room. I am as hyper vigilant as a soldier in Afghanistan in a pdoc's office, that's why I can't pay attention. But, like you, Rhi, I know a few people with bipolar that appeared when they were unmedicated...and they're all my relatives. I have gone through all these doctors, but I feel it would be foolish not to have one. A dilemma...but a small one compared to what many people are going through.

[laineyk]

I wanted to say HI! and thank you for posting on my post.

are we twins? because you sound so  much like me. I had to laugh with the story of your shoes being on your feet (sorry that I laughed) because I can't find anything anymore.

 

I have wondered about sugar levels for some time now and because they just do regular glucose on blood work no one ever seems to concerned, even though my mother and both brothers have diabetes

 

so tell me, what are you on now and how are you doing

[laineyk]

bumped so you will see this