wantmyhubbyback: zyprexa withdrawal symptom mgmt?

[wantmyhubbyback]

everyone, thanks.  alto, all i can say is that hubby is so non-decisional (again, i think due mostly to meds although to be fair he was not a highly decision-oriented guy even  before all this) that he feels he has to rely on the docs. and i still can't get him to come to this forum so he can read for himself the success stories like jammin's. jammin -- i see you're located in florida -- if you're within a 3 hr drive of tampa/st. pete, would appreciate your sharing via private msg names of any docs you recommend.

[Meimeiquest]

I agree with jammin....Zyprexa is hardest and most dangerous. Going off a benzo and then Zyprexa would be pretty tough (actually I tried and failed back in 2012). Just try to keep calm about it all so you don't end up increasing the benzo beyond what it is now, and expect to come off SLOWLY.

[wantmyhubbyback]

quick update: last week we had a consult with a transplant psych doc at northwestern university who said some interesting things of both the useful and non-useful variety, as i suppose is true of most psych doctors.

 

useful

1) hubby is not psychotic. yay! but i already knew this.

2) for some people, zyprexa 2.5mg is just too high of a jump off point and microtapering is the way to go. i'm guessing if we can't get hubby's doc to write the Rxs we need, this guy would do it. (hubby's PCP is not willing to write Rxs for psych meds)

3) he doesn't think hubby needs 2 ADs (both paxil and mirtazapine), if any at all.

 

non-useful

3) he claims there is no issue in the load or interactions of kidney and psych meds, and doesn't believe that the burden on the liver (cytochrome P450) is an issue. yet. unfortunately, there IS now something wrong with the kidney and hubby has to have a biopsy on tuesday. 

4) he thinks hubby is bi-polar, which is complete hooey. i can't believe that i wouldn't have seen evidence of that in the first 15 years of knowing/living with hubby, although the doc insists that bi-polar folks can have very quick, short-lived episodes of "vulnerability" where the condition manifests from time to time, with sometimes years or decades in between.

5) he thinks hubby needs to be on some kind of "mood stabilizer."  i couldn't disagree more.

6) he doesn't think all this had anything to do with the post-transplant issues (CMV virus, etc.) which makes no sense and says everything that's happened is all coincidence.

 

TMS continues to work wonders. will post about that in that thread.

 

 

 

he thinks hubby is bi-polar. this is also not true because for the first 16 of the last 18.5 years, hubby was as even-keeled as could be.

2) this doc thinks of zyprexa as a "mood stabilizer" and that hubby should be on i

[jammin83]

Zyprexa wd causes a whole grip of symptoms that mimic various mental illnesses. I was originally BP II with no full blown mania and coming off of it I had off the charts mania. It's impossible to diagnose somebody while they are in withdrawal from this stuff, there are just too many things going on. I know you are searching for answers and help right now and I don't mean to sound cynical but you should be really careful with the docs and what you tell them. Very few of them are aware of the dependency involved with zyprexa and really don't know much about the various symptoms of withdrawal and how long-lasting it is. If you try and explain it to them most of them simply won't believe you and insist it is a return of symptoms. For me, I just get the doctor to write me the script and do my own thing. He knows I am tapering down but I don't divulge too much information. I tried going to a different doctor during a particularly scary time and it was a total waste of time. Sadly, that's how most of it goes. There really isn't a whole lot they can do besides prescribe more drugs which is the last thing that he needs. Don't let whatever they say get you down, just ignore it and keep doing what you have to do to get hubby off of the drugs safely and efficiently. 

 

I've made a huge improvement this last week from the zyprexa. I'm about 10 months in and it was unbearable for a while but it turned around relatively quickly and is a lot more manageable now. I think a lot of people see significant improvements around then. It was pretty bad up until then though. I hope he is doing okay. Zyprexa wd is a living nightmare.

 

If he ever wants to talk to someone who has been through it before I'd be happy drop him a line. 

[Meimeiquest]

You really, really have to do the end of the Zyprexa slowly. It was stormy for me and I was not nearly as sensitized then as now. I don't care what any doctor says! These antipsychotics, no matter what you call them, are complex, powerful drugs.

[Altostrata]

Just stick with polite insistence that minimizing the psychiatric drugs is what your husband wants and be specific about your requests regarding tapering.

 

I would NOT take any chances by jumping off 2.5mg Zyprexa. Taper down as far as you can.

[Wildflower0214]

everyone, thanks. alto, all i can say is that hubby is so non-decisional (again, i think due mostly to meds although to be fair he was not a highly decision-oriented guy even before all this) that he feels he has to rely on the docs. and i still can't get him to come to this forum so he can read for himself the success stories like jammin's. jammin -- i see you're located in florida -- if you're within a 3 hr drive of tampa/st. pete, would appreciate your sharing via private msg names of any docs you recommend.

There is a decent doctor in Brandon, FL. Someone on this forum added her name to the list we have of docs. Go to the title "Tapering", then go to the subject titled "Recommended Doctors, Clinics...etc" (that may not be the exact title, but it's close.)

 

The doctor's name is Kathleen Carroll (spelling?). You can find her contact info in the above referenced thread. I heard she is good. I have not seen her personally. I have also heard she is hard to get in to see, she is booked a month ahead and she may be expensive. But, I wanted to let you know nonetheless.

 

 

Good Luck.

 

PS- the post with her info is on the second to last page in that thread. It was made on July 18th... That might help you track it down easier.

[Wildflower0214]

Also, I will just throw this out there.... Sarasota has a lot of alternative doctors/naturopaths/functional medicine practitioners. Sometimes these people are just as ignorant as the rest of the medical community. But, sometimes....they actually have a clue.

 

It may be worth it to try and see what may be offered there as well. It's not too long of a drive down there from St.Pete/Tpa.

[jammin83]

Hubby's wife, can we get an update?

[wantmyhubbyback]

Hubby's wife, can we get an update?

yes, yes we can  sorry for the long report.

 

so today we saw the 3rd in the parade of doctors designed to help us figure out where idiot doctor has gone wrong, and what we should do about it. this doc had an extremely interesting point of view that the other 2 didn't, which i'll get to in a minute. but in summary,  here are the points on which all 3 more or less agree:

 

- hubby is not psychotic and so likely does not need an anti-psychotic.

- hubby does not need 2 ADs.

- microtapering zyprexa first is way to go (although the 2 transplant docs were more ambivalent about mt vs. the guy who's the microtapering specialist, which is not surprising)

- none of these meds are impacting the kidney's function (although i'm not sure i believe that). they didn't believe the CMV had anything to do with the psych issues (but doc #3 did allow for the possibility that the strong anti-viral that hubby was getting to treat the CMV might have been suppressing some of the negative impact of the other drugs -- see below -- which is why we didn't see the psych issues occur immediately following the transplant, but only after hubby went off of the anti-viral about 8 months later.

- the 2 transplant docs are also ambivalent about the genetic testing results, which showed that zyprexa, paxil and mirtazapine are extremely bad choices for hubby given his metabolic profile, claiming "they might be right, or they might not be right." the mt specialist (who ordered the study) was naturally more bullish on the results, which suggest that IF hubby had to have an AD or an AP, he should be on zoloft and latuda.  but since we want to kick the drugs completely we're trying to avoid going that direction.

 

and here's the super-interesting thing. if you read back in my thread, you see that somewhere alto asked me to put all of hubby's kidney drugs in the i'action checker, which i did. and there were some i'actions, but this doc #3 says that's not what's important. what's important is that Myfortic (mycophenolic acid), one of the anti-rejection drugs that hubby takes, has been reported in some studies to cause anxiety, racing thoughts, etc. i can't believe that we've been seeing idiot doc FOR TWO YEARS and he never saw fit to mention this to us.  note, this is hubby's 2nd transplant ... after the first transplant 28 years ago, he took sirolimus and imuran, and had no psych issues. after the 2nd transplant, he was switched to tacrolimus and myfortic.  after the first bout of crazy, we looked up tacrolimus and saw that it caused neurotoxicity, and hubby was also having a giant problem with skin cancers, so we swapped back to the sirolimus instead of tacrolimus. and that in fact did cause the skin issues to cease. BUT WE DIDN"T CHANGE THE MYFORTIC BACK TO THE IMURAN.  honestly, i dunno why i didn't pay as much attention to this drug as to the other. but sho' nuff, dr. google had the story:

Myfortic -- Psychiatric side effects  -- Psychiatric side effects including anxiety have been reported in de novo patients. Depression has been reported in maintenance patients.^[Ref]

so... duh. maybe this has been the root cause all along. occam's razor, and all that. in fact, i should have realized it when meimeiquest started asking those very good questions months ago.

 

but this doc had a related comment, which is that the imuran is really not a very good drug either, and it might be better for hubby to stay on the myfortic and try to cope with the psych issues than change back to the other immunosuppressive. again, not sure i agree with that advice, but wow, am i interested to find out if this stupid non-psych drug has been causing the "underlying" psych issues.  that would explain why hubby appears to "relapse" when we take away the zyprexa -- the myfortic is still on board!

 

in related news, hubby's transplant doc (who is married to idiot doc) wants to DOUBLE the myfortic because the kidney is seeming to have some creatinine issues (creatinine is a measure of kidney performance... a good level for a person with 2 kidneys is 1.  a good level for a person with 1 kidney is 1.7, 1.8 -- ideally less than 2.0  hubby's creatinine has been climbing from 1.7 to 2.2 over the last 8 months.  (curiously, since he started taking the mirtazapine. we didn't change anything else at that time)

 

so i guess if the myfortic is really the driver of the psych trouble, we'll know it for sure if hubby gets worse when we increase the dose.  but i really am uncomfortable with all of this trial and error. it seems that these docs are not worried about going to trial, nor about the errors.  doc #3 said that, years ago, the psych docs used to actually take all the drugs they were giving to patients so they could see how the side effects impacted their lives. too bad this isn't de rigeur anymore.

 

we are coming to an end of the TMS, which has worked well, and i wonder if because it's not a drug it's just quelling the impact of the myfortic (if the myfortic is in fact the problem) in a different way. i don't much care, since hubby occasionally sings a little tune some days, which i haven't heard him do in 2 years.

 

so now we just need to figure out how to get idiot doc and his idiot wife to see if myfortic is the problem. given how unwilling they've been to help us thus far, not sure we can get them to consider a change. we're moving to florida in 6 months or so, and it may just be better to keep tapering the zyprexa, and then get a better set of docs in our new location. our key interview question: "what is your plan for getting hubby back?"

[wantmyhubbyback]

sigh. this update is not so good.

 

as we've been making plans to move to florida (which have been accelerated since my last post), hubby has gotten increasingly worse. he's now back on the zyprexa @ 15mg and it's not helping. he's going to see idiot doc today and i am certain he will say more is better, which has been his continuing refrain. hubby is also needing to take more ativan and gaba just to keep from freaking out during the day.  he's talking about needing to go back in the hospital -- and this is exactly what happened back in june, where he basically just talked himself back tot he psych ward. he seems incapable of seeing anything positive in his life, and is scared of everything.  he says he wants to BE in florida, just doesn't want to go through the process of getting there. moving trucks have been arranged, however, and we have to drive there with our pets, so we have to leave at the end of the month no matter how he feels.  i'm hoping he doesn't decide to jump out of the car while we're on the highway.

 

curiously, his anxiety is always much worse prior to any sort of event or trip, not so much at the time the event is taking place. if we can make it through the next 3 weeks, i think he'll be ok. suggestions for coping (both for him and for me!) are welcome.

[Katy91]

Hi

 

What is the reasoning for increasing the olanzapine to 15mg?

[Altostrata]

Hi, WMHB.

 

Was the myfortic increased, too?

 

Did you see Dr. Carroll? http://survivingantidepressants.org/index.php?/topic/988-recommended-doctors-therapists-or-clinics/?p=169612

 

Perhaps you can discuss this with her?

 

Anticipatory anxiety is often more intense. Does your hubby use any mind-body techniques, such as meditation, to deal with anxiety? This might be a good time to learn.

[wantmyhubbyback]

Hi

 

What is the reasoning for increasing the olanzapine to 15mg?

hi, katy. the reasoning for increasing is that hubby is having racing thoughts, doubting our marriage, etc.  hubby's therapist thinks this is more about OCD/rumination than psychosis. but idiot doc thinks racing thoughts and marriage doubting are the pre-cursor to delusions, and so he thinks hubby is psychotic and keeps prescribing more and more zyprexa (i was right about today's visit -- upped to 17.5mg).  i can't wait to get away from this doc.

[dalsaan]

Hi WMHB,

 

Sorry this has been so difficult for you both.  I just want to chip in on the mirtazapine.  The sleep effects of this drug are at their most significant at the lower rates.   When Drs are concerned about too much sedation when people start taking mirtazapine they increase the dose rather than lowering it.  This means that if your hubby is taking mirtazapine for sleep, he should be able to drop the dose and still maintain the effects he is after.   If you consider this you should follow the advice to taper.  Having said that I have been able to drop pretty quickly down to doses of around 20mg, its below 15 and below 10 that I had to slow things right down.

 

This may be something to keep in the back of your mind if you are concerned about the mirt or just want to reduce the overall drug burden.

 

Dalsaan

[wantmyhubbyback]

dalsaan, many thanks. will keep that in mind. hubby has been sleeping pretty well since january when we started the mirt. it was meant to take over for the olanzapine, and the doc increased it from 30 to 45mg, interesting that it is more potent at lower doses...we'll be careful about that. 

[wantmyhubbyback]

Hi, WMHB.

 

Was the myfortic increased, too?

 

Did you see Dr. Carroll? http://survivingantidepressants.org/index.php?/topic/988-recommended-doctors-therapists-or-clinics/?p=169612

 

Perhaps you can discuss this with her?

 

Anticipatory anxiety is often more intense. Does your hubby use any mind-body techniques, such as meditation, to deal with anxiety? This might be a good time to learn.

hi, alto.  the myfortic was increased, and hubby was jumping out of his skin so they reduced it back to the original level after a week... although candidly, i'm not sure if his reaction was from the increased myfortic, the continued zyprexa, or simply that for reasons that are unclear, hubby has just lost his ability to cope with even the most benign situations (he got upset folding socks the other day when he couldn't find 2 that matched).

 

this is completely abnormal for him. he was a low-maintenance, easy-going, unflappable guy before all this happened, and tolerated major surgeries without ANY sort of anxiety response.  i can't imagine how he could cope with another transplant or major health issue now.

 

we have not yet contacted dr carroll but will do so once we get to florida. hubby has set up with nephrologists and the transplant psych doc at tampa general hospital, and i can only hope she is better than idiot doc (or at least, not worse).

 

we move on oct 27th. pls send us calm, happy thoughts!

[dalsaan]

dalsaan, many thanks. will keep that in mind. hubby has been sleeping pretty well since january when we started the mirt. it was meant to take over for the olanzapine, and the doc increased it from 30 to 45mg, interesting that it is more potent at lower doses...we'll be careful about that. 

 

It's sleep effects are more potent at the lower doses which means many people still get the sleep effects by taking doses much lower than 45mg

 

D

[wantmyhubbyback]

hi, all. so, we moved to fla on oct 27th as planned. hubby managed to stay out of the hospital (yay!) even tho the last 3 weeks prior to our departure were pretty hellish.

 

i'd had wonderful visions of driving away from our home and seeing a road sign reading "You Are Now Leaving Anxiety and Depression." it was a nice thought. unfortunately, A&D also apparently packed their bags and were waiting for us in our new house before we even arrived.

 

hubby had a near-miss accident while driving on one of our first days down here and now is afraid to drive (despite having driven 1,000 miles to get here with no incident). my job involves a lot of travel and so my choices are to quit so i can stay home and take care of him, or throw caution to the winds and hope he manages to cope.  if i quit, it will be hard to get the kind of healthcare plan we have now @ a reasonable cost. additionally, his prior therapist had warned me that making these kinds of accommodations isn't really in his best interest. but i'm pretty concerned about leaving him by himself. as it is, even when i'm here, he's spending most of his time with a glazed-over stare in front of the tv.

 

on a positive note, he ran out of the 2.5 zyprexa and so took it upon himself to start the taper instead of me goading him into it.  he's now back at 15mg. maybe the 3rd time will be the charm? 

 

he sees the new kidney and psych docs next week -- if we don't like them we'll be seeking out the ones mentioned earlier in this thread. will keep you all posted. my personal goal is to get him out of the month without a trip to the hospital. november 2013 and november 2014 both had trips to the psych ward so if we can avoid it this year it will be a real triumph.

[wantmyhubbyback]

 

everyone, thanks. alto, all i can say is that hubby is so non-decisional (again, i think due mostly to meds although to be fair he was not a highly decision-oriented guy even before all this) that he feels he has to rely on the docs. and i still can't get him to come to this forum so he can read for himself the success stories like jammin's. jammin -- i see you're located in florida -- if you're within a 3 hr drive of tampa/st. pete, would appreciate your sharing via private msg names of any docs you recommend.

There is a decent doctor in Brandon, FL. Someone on this forum added her name to the list we have of docs. Go to the title "Tapering", then go to the subject titled "Recommended Doctors, Clinics...etc" (that may not be the exact title, but it's close.)

 

The doctor's name is Kathleen Carroll (spelling?). You can find her contact info in the above referenced thread. I heard she is good. I have not seen her personally. I have also heard she is hard to get in to see, she is booked a month ahead and she may be expensive. But, I wanted to let you know nonetheless.

 

 

Good Luck.

 

PS- the post with her info is on the second to last page in that thread. It was made on July 18th... That might help you track it down easier.

 

thanks, wildflower... unfortunately dr. carroll doesn't have availability for new patients until march!!! she must be good (although i looked her up on healthgrades and some of her current patients don't have great things to say about her). but thanks for the reco -- i'll consult the list and see if we can find someone else.

[wantmyhubbyback]

update: well, we avoided the psych ward in november but i wouldn't be suprised to see it sometime this month. hubby is "decompensating," (which i understand to be the tech term for when your symptoms turn bad after they've been better)  and i'm seeing the now-familiar spiral of negativity, paranoia, marriage-doubting, etc. that were precursors to the prior hospitalizations.  the most interesting thing about this is that before, these things took place when hubby was jumping off the 2.5mg zyprexa to 0.  he has been taking -- and is still at -- 15 mg.  so he really either is psychotic or there's something else going on. and since i've known him for almost 20 years, during which time he was not psychotic, so i still remain in the something-else-going-on-camp.  but his labs, which he has drawn every month to confirm the kidney is ok, would likely show any major things in terms of cancers or other such physiological issues.

 

re the new docs:  the new kidney doc doesn't think the psych issues are from the myfortic because hubby's dose is so low, and he was unwilling to accept the idea that there must have been something to do with the transplant or the cmv infection that caused this situation.  the new psychiatrist is, if you can believe it (and i know you can), even worse than idiot doc. she spent an hour trying to convince hubby that he was bi-polar in addn to his other issues. 

 

the only good news about these 2 folks is that now we know enough to not hang out for 2 years waiting for them to get smarter, and we're on the hunt for both another nephrologist and another psychiatrist.  unfortunately the brandon, fl psychiatrist who is relatively close and recommended on the SA list isn't taking new patients appointments until march.  i'm pretty sure hubby can't wait that long (and i know i can't).

 

before we left, we saw a psych transplant doc at the univ of chicago who agreed that hubby did not need to be on an anti-psychotic but who believes -- partly based on the the gene study we had done, and partly on his prior experience -- that it will be easier to manage the reduction/tapering of latuda than zyprexa. i know all of you generally believe that polypharmacy is bad in and of itself and it's not good to cross-taper APs or ADs, but we are at the place of limited choices now if we want to keep hubby out of the hospital.   the new idiot doc wrote an rx for the latuda (20mg, i think) and suggested hubby reduce the zyprexa to 12.5mg.

 

any opinions on this?

 

at the same time, we are seeking out mindfulness/yoga groups, anxiety support groups, other types of classes so hubby is distracted/has something to do, and trying to remain hopeful.  it is the hardest thing i have ever had to do.

[Fresh]

Hi wantmyhubbyback ,  Just wanting to give you a shout out of support from down under.  What a year you've had.

Congrats. on the move , that's a big undertaking at the best of times.

 

A question about the drug interactions:  we've seen people on this site react similarly to prednisone. Is hubby still taking that?

 

bw ,  Fresh

[wantmyhubbyback]

hi, fresh. yes, i asked about the predisone, too. the kidney doc says that 5mg is a super-low dose, and beyond that, since hubby has been taking it for nearly 30+ years (since the time of his first transplant in the mid-1980s), his body has ceased to manufacture its own cortisol and stopping the prednisone would be a big mistake. i didn't know about the prednisone/cortisol connection, but have been thinking about trying to find some kind of cortisol remover because hubby's symptoms are all much worse in the mornings.

 

what is CES therapy? it seems to have worked for you?

[Fresh]

You might try using essential oils.  Google "essential oils for cortisol" to see which are recommended.  I've made

a hormone balance blend from basil , clary sage , lemongrass and geranium.

 

CES is Cranial Electro Stimulation therapy.  

I bought a Sota BioTuner , and it stopped me having w/d symptoms while I tapered from 45mg to 25mg pristiq

(April to November this year).  

Before doing the CES ,  I had a bad month of symptoms going from 50mg to 45mg. So yes , it's been wonderful for me.

 

Check out the Sota website , you can buy them on ebay for about US $325:00.  

[wantmyhubbyback]

update: the good news is that we still have not seen a psych ward here in florida. yay!

 

the bad news is that hubby now has severe constipation and 2 colonoscopies later the GI doc says hubby's colon is not clear and he thinks "there must be something there."  you can imagine how hubby, who is still very anxious despite the polypharmacy, is taking this news. he ruminates about it all day long, which just makes the anxiety worse.  i think a number of folks in this forum have linked anxiety to gut issues, so i'm seeing this as yet another vicious circle -- the more anxious he gets, the worse the Gi issues are, then the worse the anxiety is, and so on.  hubby has convinced himself he has incurable stomach cancer and is about to expire any minute.

 

so we went to the mayo clinic in jacksonville to see what they think and, surprise, they think hubby is on way too many meds, some of which are causing the constipation. the recommendation is to reduce the zyprexa first, then the paxil (which, notably, is what alto had already suggested).

 

we need a local psych who will prescribe (we're 4 hours from jax and hubby's pcp doesn't want to get involved). the SA-recommended dr. carroll isn't taking new patients. so we saw another shrink a few weeks ago who agreed with mayo's too-many conclusion but instead of following their advice on reducing the zyprexa, he wants hubby to cut the paxil from 20mg to 15mg.  the other idiot doc agrees with cutting the zyprexa but not until hubby goes to 30 mg of latuda.

 

i don't think we want to stair-step these reductions, even though it may be that raising hubby's paxil from 10mg to 20mg back in nov 2014 was a mistake and maybe contributing more to the problems than the zyprexa. and for sure we are not INCREASING anything!   my new motto: "one stupid drug at a time, please."

 

hubby continues to see both a psych therapist and a mindfulness therapist.  he seems to have a hard time applying the mindfulness training to help himself feel better.  he's also having a tough time with memory issues (even though at mayo they tested his memory and cognition, and he did well).

 

so, our new plan:  1) wait for the next colonoscopy on 2/16, which hopefully will be fine and then hubby can stop obsessing about stomach cancer.  2) continue to look for a psyc doc who shares the 0 goal. 3) in the meantime, continue to reduce the zyprexa on our own -- he's currently at 10mg, and i think can go to 7.5mg by himself so long as he's not worrying about something major. 4) plan to use the compounding pharmacy in our neighborhood to start on the 10%/month zyprexa reduxes once hubby gets to 2.5mg.  5) try to be hopeful and settle in for a long haul on this.

 

other ideas/strategies welcome.

[wantmyhubbyback]

wow. just re-reading my thread here. the difference a year makes, and all that.

 

so, where to start? i'll lead with the positive news items

• i get to change the signature
• we've finally found the right doc (i think. trying to not be over-optimistic as that sometimes is a big setup for disappointment later)
• hubby is getting more active
• we got a new puppy

 

THE SIGNATURE

 

following the trip to Mayo, hubby stopped the gabapentin pretty much c/t without ill effect. he moved the ativan back to .5mg/day in the mornings. and in march he cut the paxil from 20 to 10mg. and he just cut from 10mg to 0 this week.  i'm concerned about the speed of that taper but i will say that between 1996 and 2012, hubby was on 10mg of paxil maybe 2 or 3 times for a year or so at a time, and didn't have any issues going from 10 to 0.  maybe he already had paxil poop out? i don't know but i'm watching him carefully.  he also went from 20 mg latuda to 40mg while taking the zyprexa from 10mg to 7.5mg.  but he thought the latuda was making him worse, so he stopped it entirely (but without taking the zyprexa back up). the mayo pharma expert also recommended some changes/deletions to the vitamins, supplements, and other stuff hubby was taking.  the constipation comes and goes, but is not nearly as bad as it was in the early part of the year.  all in all, there still has been no visit to the local psych ward and hubby's mood has improved a little bit.  the mornings in particular are not as bad.

 

THE RIGHT DOC

 

today we saw dr. ryan estevez in tampa. he's a little quirky (like the christian bale character in "The Big Short," for those of you who've seen the film) but boy, the guy knows his stuff on cmv, transplant and psychiatry.  lots of diplomas on the walls from harvard, stanford, etc.  i wouldn't ordinarily put much stock in that sort of thing but his expertise on the inter-relationships between the meds, mood, and kidney issues was incredible. the psych and pharma docs at mayo were good, but this guy was leagues better.  so... his advice:

- see how things go with paxil @ 0 and reinstate to 5mg if necessary. hold 3 weeks.

- zyprexa to 5mg for 3 weeks

- zyprexa to 2.5mg for 3 weeks and hold

- ativan to every other day for 3 weeks

- ativan to 0

 

that will leave him with zyprexa @ 2.5mg and mirtazapine @ 45 mg -- he wants to ensure hubby can sleep thru these tapers so mirt will be the last one we do.  he agrees with us (and all of you) that the zyprexa 2.5mg to 0 is much too fast and agrees with a micro-taper, and was especially good at pointing out (which no doc has done yet) that once CMV crosses the blood-brain barrier, as it has in hubby's case, it makes the patient particularly unstable during stressful periods.  so we have to choose a time period for the microtaper that ideally will be free of travel, surgeries, or other potentially upsetting situations.

 

like i said, trying not to be overoptimistic about this but glad to finally meet someone who can actually do no harm and help us find a solution.  the others can't find their ass with a map, both hands and flashlight.

 

ACTIVE HUBBY

 

i've been after hubby for some time to stop watching so much TV. i get that it's basketball and hockey playoffs, and he is a sports fan, so.... well, that's a lot of tv watching.  but i'll give him credit where due -- he got himself a volunteer gig with the optimist club (how great is that? the optimist club for someone who's depressed. that's awesome!) at the tampa rays baseball games.  it's hard work but he made it happen on his own, and that's what's important.  i'm also trying to find ways to get him out of the house -- walking, biking, errands, charity work, etc.... and this is a good segue to the next item....

 

NEW PUPPY

 

his name is kirby (after the vacuum cleaner). he's a lab mix, 11 weeks old, and terminally cute.  they should somehow figure out how to capture puppy breath in a spray -- pretty sure this would put all the other ADs out of business.  hubby is a little nervous about taking care of him, but i keep pointing out he's our 4th dog and hubby has managed to raise the other 3 beautifully.  i'm hoping hubby will start walking him (when he's old enough to meet other dogs) more and that will also help with his mood.

 

thanks again to the moderators and everyone else -- i can't discuss these issues with too many folks (only hubby's parents and brother, and one of my good friends, are aware) and so it's great to have this outlet. i hope our experiences are useful to others and wish all of you who're trying to get yourselves or your loved ones back strength, hope and peace.

 

diagnosed with MDD/GAD nov 2013, 6 months following CMV complications post-kidney transplant

lst zyprexa taper 12 months; /increased paxil to 30 mg; crash nov 2014 w/ suicidal ideation & 10day hospitalization

2nd zyprexa taper 6 months; crash after 6 weeks; reinstated zyprexa 15mg in 6/15 (both tapers worked well to the 2.5mg dose)

mirtazapine 30 mg 45mg

ativan .5mg 1x/day, occasionally .5 addl  if needed for sleep 3x/day NOW BACK TO .5mg 1/x per day

paxil 20 mg 1x/day  NOW 0

gabapentin 1200 - 1800 mg 2 -3 x/day NOW 0

immunosuppressive drugs for kidney transplant: sirolimus, mycophenalate, prednisone, levothyroxin and a whole handful of others STILL A HANDFUL, BUT A SMALLER ONE

[Meimeiquest]

Yahoo!

[wantmyhubbyback]

hi, everyone. hubby has been making some good progress on med redux over the last 4 months, although he continues to struggle with the depression and anxiety most days.  after stepping the zyprexa down from 17mg to 15 to 10 to 7.5 to 5, and holding at 5mg for probably 3 months or so, he stepped down to 2.5mg and we saw the decompensating start almost immediately. racing thoughts, the hospital talk, insomnia, waking up at 4am upset about his life.... all the same things i'd seen twice before. so the doc wrote an rx for 3mg and we went to a compounding pharmacy to get it -- and the relief was almost immediate! really really interesting to me how this worked, and it makes it clear to me that this drug is really addictive and what people experience is true WD and not the "unmasking" of something that is somehow being covered up by a certain dose.  the doc has also put him back on the anti-viral he was on following the transplant and before the pile of crazy started, in the hopes that maybe somehow minor strains of the virus are still messing with his brain and if we can quiet them down, the D&A would go away too (or at least be minimized)

 

he still hasn't found any sort of volunteering opportunity, and that's upsetting to me because i think that if he would just get out of the house a bit and let other people appreciate his kindness, his intellect and his sense of humor, that would be better for him than all the TV and all the drugs in the world.

 

so... there's still the ativan and the mirtazipine to mess with, and i think as soon as he's stable on the 10% method for a few months we might try taking on on the ativan)

 

i can't thank all of you enough for your kind words and advice over the past several years -- it's meant the world to me.  will continue to keep you posted. and for those of you who are just discovering this thread... it can be done! don't lose heart... in the end, the struggle will be rewarded.

[Jncs]

hi, everyone. hubby has been making some good progress on med redux over the last 4 months, although he continues to struggle with the depression and anxiety most days.  after stepping the zyprexa down from 17mg to 15 to 10 to 7.5 to 5, and holding at 5mg for probably 3 months or so, he stepped down to 2.5mg and we saw the decompensating start almost immediately. racing thoughts, the hospital talk, insomnia, waking up at 4am upset about his life.... all the same things i'd seen twice before. so the doc wrote an rx for 3mg and we went to a compounding pharmacy to get it -- and the relief was almost immediate! really really interesting to me how this worked, and it makes it clear to me that this drug is really addictive and what people experience is true WD and not the "unmasking" of something that is somehow being covered up by a certain dose.  the doc has also put him back on the anti-viral he was on following the transplant and before the pile of crazy started, in the hopes that maybe somehow minor strains of the virus are still messing with his brain and if we can quiet them down, the D&A would go away too (or at least be minimized)

 

he still hasn't found any sort of volunteering opportunity, and that's upsetting to me because i think that if he would just get out of the house a bit and let other people appreciate his kindness, his intellect and his sense of humor, that would be better for him than all the TV and all the drugs in the world.

 

so... there's still the ativan and the mirtazipine to mess with, and i think as soon as he's stable on the 10% method for a few months we might try taking on on the ativan)

 

i can't thank all of you enough for your kind words and advice over the past several years -- it's meant the world to me.  will continue to keep you posted. and for those of you who are just discovering this thread... it can be done! don't lose heart... in the end, the struggle will be rewarded.

My hubby is very much in the same situation. We were very lost for 2 years and Thanks to Alto and everyone's help from this forum, he is now on a gradual recovery. We are still trying to cope with his morning agitation, which is the toughest part of the day. His yellings is milder, but is still puzzling and a rare encounter in this forum.

[wantmyhubbyback]

hi, all. here's the fall 2016 update:

 

• hubby continues to improve slowly. he's about to reduce the zyprexa to 2.5mg after being at 3mg (compounded) for the last 2 months. while the 2 month vs 1 month redux schedule will add years to the process, the doc thinks that hubby is just very sensitive to this stuff and as we can see from katy91's and others posts, at the lower doses the need to reduce more slowly is paramount. 
  ​
• he continues to have trouble staying asleep and often wakes up at 4 or 5 am and then spends 2 hours laying in bed fretting over his life. i keep telling him to pick up a book or the paper, or go walk on the treadmill, or really to just do ANYTHING and it will make him feel better, but he refuses.  the doc prescribed rozerem (ramelteon), which i understand to be a sort of superstrength version of melatonin.  it helped a bit initially, but lately is less effective.  he's also taking trazodone for sleep as well.  same thing as the rozerem -- helped at first but now not so much.  we've dropped the mirtzapine to 30 mg. and he's still taking the .5mg ativan in the mornings.
   
• the anxiety and depression are still with us, but hubby finally did find another volunteering gig (the optimist club turned out not to be a good fit as it required him to be on his feet for 8 hrs straight, and he had trouble with that), and is taking a beginning spanish class. he also was taking piano lessons but sadly gave them up because somehow this illness has caused him to become a perfectionist, and if he can't do something at least mildly well, he doesn't want to do it at all. note, he likes the spanish class because he had about 5 years of spanish in high school and college, and so he has a sense of being good at it, and that is a big clue, i think, about how we'll need to proceed in order to get him back into the rest of his life.
   
• hubby completed another 3 weeks of TMS recently coz we thought it might help, as it did last year. unfortunately this time the results were not as good... no discernible improvement.  the doc is recommending ketamine treatment, so i'm going to look in the forum here to see if there's a threat on that. i'm concerned hubby is too anxious for it -- what i've read so far suggests that people who are anxious can have a bad trip on ketamine.
   
• kirby the cute puppy is now kirby the cute little adolescent monster dog.  it's a good thing he's still cute coz he is a terror.  at least he keeps hubby from just sitting on the sofa all day since he has to go outside every few hours.

 

2017 will be our 4th year of this challenge... i sure do hope it's the last one.  wishing you all the happiest of holidays, continued strength and peace.

 

[wantmyhubbyback]

On 2017-06-14 at 10:00 PM, elbee said:

The conundrum I've faced: On benzo websites, they generally say taper the benzo first. On this website (focused on AD withdrawal / disuse), the advice is mostly to taper the AD first. In general, I think the advice / guidance on this site is THE BEST I have found online. However, I'm not sure I agree that it's generally best to taper the benzo before the AD if taking both.

 

I thought I would add my 2 cents on this topic. I'm posting about it on my own thread, but I think this is an important thread for folks taking both benzo and AD, so I want to contribute based on my own experience. I've been alternating the taper of my benzo and AD, and so far I haven't had a panic attack (my primary issue). However, having become more attuned to my body, mood, symptoms, etc., AND being fortunate enough to NOT have to work at this period in my life nor have any other major obligations (for now), the alternating approach has worked well, and I'm going to move forward with the benzo taper/jump before the AD taper/jump moving ahead. First, I'll quote what Rhiannon said in this thread which mirrors my experience (her first comment below, anyway), and at the bottom I'll copy and paste what I wrote in my own thread about my own experience. 

 

Earlier in this thread, Rhiannon suggests that it may make sense to taper the benzo first, and then somewhat backs off on that position: 

 

 

 

My plan is to continue the alternating AD / benzo taper until I get to 75 mg of Zoloft (half of the original dose at 82 currently), and then taper the Klonopin down to zero / jump. Because of my understanding of how the Benzo works (generally, reach tolerance very quickly, 4-8 weeks), I believe I'm simply going through a dosing/withdrawal affect with each benzo dose I take - twice daily. I take some in the morning and some at night, so in other words, I take my morning pill in the morning, get back up to tolerance level, then spend the rest of the day simply going through benzo withdrawal. Then the same cycle with the nighttime dose. Whereas the SSRI has a much slower effect on changing brain structure (based on the scant research out there I have found). My goal with the alternating taper has been to heal both neurotransmitter systems (GABA and Serotonin) at a time, but reducing only one med at a time. I do think this has worked relatively well, and continuing this method through my taper of both drugs would probably (hopefully) bring me to a successful zero on both (if I go slowly enough).

 

However, I'm at 25% of the benzo now (.5 mg) than when I started this taper (2 mg), and I think it now makes sense to take the benzo all the way down and end the quickly repeating withdrawal symptoms of that drug first I experience twice daily. THEN I focus on reducing the SSRI as slowly as I need to until zero/jump. My experience is that while the benzo withdrawal seems to be more acutely intense, the SSRI withdrawal is much slower, yet also much more dramatic with regards to my anxiety panic symptoms. With regards to “activation,” the benzo seems to be much more activating in the short term, the AD much more activating in the long term. At this point, I'm now much more concerned about experiencing a panic attack through the SSRI withdrawal than the benzo, and I don't believe the benzo will help with the SSRI withdrawal symptoms, but in fact may exacerbate them. Again, this is based on my own research and my own experience. I could very well be totally wrong!

 

In short, I think the SSRI MAY stabilize the benzo withdrawal, but I don't believe the benzo will at all help to stabilize the SSRI withdrawal. Will doing the benzo withdrawal first exacerbate the SSRI withdrawal after? Perhaps … we shall see how it goes. But it FEELS to me that the continuous daily effects of simply being on the benzo at a constant dose (dosing /withdrawal twice a day) is worse overall than any benefit that would be derived from being on benzos during the AD withdrawal.

 

 

hi, elbee. curious to see how this goes for you. hubby has been taking .5mg benzo (lorezapam) mornings only for the last 4 years ... it seems to calm him down but i think is causing rebound anxiety overnight and possibly other fear/anxiety symptoms during the day. he's also in the process of tapering zyprexa and is now at 2mg after having reduced from 17mg about 18 months ago.  we're going super-slowly with that since twice before he's jumped from 2.5mg to 0 and landed in the psych ward, where all they do is jack up the dose to 17mg. THAT is a pile of crazy.

 

anyway, hubby's doc thinks that the impact of removing the benzo would be more detrimental than advantageous, so we haven't gone that route, but hubby's memory loss and other benzo side effects are really starting to worry me.  keen to hear about your experience, maybe other things you've tried that have helped with the anxiety and depression? also, were you initially on a higher dose of remeron? hubby is at 30mg and i would love to see that go to 15mg but doc saying "one thing at a time," which in general i agree with. the polypharmacy has been among the most difficult things we've had to manage.

 

also note you're in our neighborhood -- hubby's doc (in tampa) is fabulous. let me know if you're interested in the contact info.

 

hope this goes well for you, and wishing you the best.

Edited June 19, 2017 by scallywag
split from mulit-drug topic; insert quote of elbee's post for context

[elbee]

Hey wantmyhubbyback, I guess it's unclear to me. Are you also getting off meds? Is the taper / history in your signature your own? I'm guessing it's about your husband?

 

Wow, we are neighbors! I have a local doc that I really like actually. He supports everything I'm doing in my recovery, and prescribes whatever it is I tell him I need as I drop in the taper. The last time I saw him and told him all the recovery stuff I've been doing, he asked me . . . "So who is managing all this for you?" I told him, "I am." I don't want to sound egotistical with that (but there is probably some of that in there, just the "runaway ego" part of me I'm trying to keep an eye on and embrace, haha) . . . but more, I'm really trying to learn to listen to my body and trust myself. I NEED TO BE IN CHARGE OF MY OWN RECOVERY . . . for me, that's part of my recovery. 

 

 I can't say that there is anything I've done that I shouldn't have tried. In trying things, the worst that has happened is I discovered something that didn't work. I think going slowly with the taper is imperative . . . and I tend to rush it. When I have rushed, I have paid and I've learned to rush less and hold more often when I need to. Since I'm not working right now, I'm pushing harder / faster than I would if I were trying to hold down a job, too. There is no way I could have gone at the pace I have if I were working! My rush now is that I'm living off savings and I'd like to be able to get off the meds before I work again. AND, if I go too fast, I'll set myself back, I know this. So we shall see

 

[Altostrata]

Hi, want. How's it going? What is your hubby taking now?

[wantmyhubbyback]

hubby was prescribed 2000 mg depakote ER after 2 hospitalizations in early february 2020.  he was diagnosed as bipolar (not sure if I or II, and not sure it matters coz i believe this is another mis-diagnosis by stupid hospital docs -- his pdoc believes there is/was some underlying physical issue that caused a manic episode in the first instance and a paranoid episode about 2 weeks later.  in the intervening 2 weeks, hubby was remarkably fine with no issues.  all his labs came back normal -- no infection, no weird electrolyte levels, etc that would signal something wrong.  so we don't know what caused these episodes but late-onset bipolar is exceptionally rare, and i don't think that's actually what's going on here. 

 

anyway -- we want to get him off the depakote so we can start again on tapering the seroquel.  as hubby had gotten down to lower and lower levels of seroquel (12.5mg 12/19), he was so much better! he had lots more energy, willingness to do things, exercise regularly, etc.  he was at 12.5mg for 2 months before the manic episode, so i don't think it was WD from the seroquel (the half-life is something like 12 hours so if his mania had been caused by WD it likely would've happened in december, or even january, vs february).

 

my question:  how long to be on this super-high dose of depakote before starting to taper it?

[ChessieCat]

I've moved your post to your intro topic.  Please post questions related to your hubby's situation here.

 

I've alerted the other mods to your new post.

[Altostrata]

7 hours ago, wantmyhubbyback said:

hubby was prescribed 2000 mg depakote ER after 2 hospitalizations in early february 2020.  he was diagnosed as bipolar (not sure if I or II, and not sure it matters coz i believe this is another mis-diagnosis by stupid hospital docs -- his pdoc believes there is/was some underlying physical issue that caused a manic episode in the first instance and a paranoid episode about 2 weeks later.  in the intervening 2 weeks, hubby was remarkably fine with no issues.  all his labs came back normal -- no infection, no weird electrolyte levels, etc that would signal something wrong.  so we don't know what caused these episodes but late-onset bipolar is exceptionally rare, and i don't think that's actually what's going on here. 

 

anyway -- we want to get him off the depakote so we can start again on tapering the seroquel.  as hubby had gotten down to lower and lower levels of seroquel (12.5mg 12/19), he was so much better! he had lots more energy, willingness to do things, exercise regularly, etc.  he was at 12.5mg for 2 months before the manic episode, so i don't think it was WD from the seroquel (the half-life is something like 12 hours so if his mania had been caused by WD it likely would've happened in december, or even january, vs february).

 

my question:  how long to be on this super-high dose of depakote before starting to taper it?

 

Good to hear from you again, want.

 

When did this bout of mania happen? We haven't heard from you since 2017.

 

I'd put my money on a drug reaction of some kind. Had he changed drugs or started any before the mania episode? Antibiotics, among others, can trigger weird symptoms.