MrsWDSyndrome:My husbands taper from remeron. Are we doing this right?

[MrsWDSyndrome]

Hi!  I just typed up my signature so I feel like the basic story is down there already!  My husband, who is pretty much through his hellish ordeal with benzo w/d is now working on tapering off remeron. He has gone from 30 mg to 4 mg.  He is feeling like it's getting harder, again. More severe symptoms, and when he feels like the w/d symptoms stabilze after a cut, he is then bombarded by side effects (heavy head, dizziness, morning panic, etc.).  He is right now 2 1/2 weeks since his last cut, from 4.4 mg to 4 mg.  This is from an email he sent me this morning from work. This is a typical morning,lately, for the few weeks following a cut.

 

I feel so short of breath. I feel like I am vibrating inside. My stomach wants no food, no drink, and is loud and destructive and crampy. My skin is hot on the outside but I feel cold on the inside. Anxiety is very high. Depression makes me feel like I could cry at any moment. My mind is racing. It’s like living a nightmare.

 

 

When he stablizes, lately especially, he still feels pretty horrible, so he's fighting the desire to cut fast and "get the hell off of this stuff,"  basically.  I will say that mornings are undoubtedly the worst for him.  He usually gets a nice reprieve in the evenings, then takes his remeron, goes to sleep, and boom, there it all goes again.

So, really, what we'd love is some input. My inclination is that maybe he needs to stick to closer to 5% cuts than 10% and maybe commit to once a month cuts rather than the typical 3 weeks that he tends to wait.  (Oddly he made 2 10% cuts several months ago that were essentially painless.  We're still trying to figure out how on earth that happened!)  Also, is it common that as one gets to the very low doses, the taper gets more difficult?  It's seeming that way to him.  Not sure if this is a common phenomonon.

Any suggestions or comments are appreciated!

[mammaP]

Hi MrsWD. Your husband's email describes just what a few people here are suffering in withdrawal

right now. If there are symptoms it is better to hold for quite a while. I'm sure that isn't what he will

want to hear but he is having withdrawal symptoms that will get worse if he cuts again too soon. It 

might help to updose a little back to the previous dose and then hold until he is comfortable, then

hold another 3-4 weeks after stabilising. 

That is what I would do in his situation. Updosing isn't failure, it is what is needed sometimes. Many

of us have to updose sometime in our tapers.

 

I think you are right to suggest smaller cuts and longer holds. I had a good taper too with very little

discomfort until I got to the lower doses. I have had to learn patience and hold for months at a time 

to avoid withdrawal symptoms.  Things will settle down again, it just takes time and sadly his nervous

system could still be sensitised from the ativan withdrawal.

 

I hope things settle down soon for him. Take a look around the site, there is a wealth of information 

and suggestions for self care while tapering and in withdrawal. You have come to the best place for

that info. 

[compsports]

Hi MrsWD,

 

When I tapered Remeron, I definitely had to slow it down to 5% of current taperer near the end.   And I didn't make a cut any sooner than before 4 weeks.

 

I had a similar type experience with Doxepin.

 

CS

[dalsaan]

Hi MrsWD

 

You've both done a great job so far. It's not easy. Be proud of how far you have come

 

I am tapering off remeron. Down to 1.8 ml (equivalent to 1.8 grams). It has got harder. I agree that smaller cuts, longer holds are the way to go.

 

 

From here I would hold as long as it takes to stabalise, then cut at less than 10 percent and see how you go

 

At times I have cut and had to go back up again because it was too much.

 

I use insomnia as the symptom to monitor and tell me when I've gone too far. I know how to read it now and can usually work out pretty quickly whether things will resolve with a hold or whether I need to backtrack and increase my dose.

 

Does you husband have a symptom that can act as a marker to indicate where he is at- ok to continue tapering, needing to holding or needing to updose?

[tezza]

Welcome MrsWDS! I'm sorry you are both struggling with this.

 

Your husbands CNS was likely still in a very fragile state (probably will be for a time) even though he felt much better. I was tapering way too frequent in the beginning and ultimately became VERY ill. I would make another cut as soon as I felt better, not realizing the 'windows and waves' were possible/probable. I began the taper from that drug in July 2011 and have quite a way to go. (Risperdal)

 

I began a taper from 7.5 mg of Remeron July 2012 and finished it December. (Just to give you an idea how slowly I tapered, this could be too fast for another person, some could go faster.) I don't follow any "plan" other than listening to my body. There is no tapering schedule that is 'one size fits all'. We suggest 10% OR LESS of each successful cut, no more OFTEN than every two weeks but this is far too fast for many of us.

 

It does get more difficult at lower doses in many cases. I would hold for a good, long time before cutting again (even if he decides to updose a bit).

 

You've come to the very best place for support and information!

[Rhiannon]

I suspect that your husband has been tapering too fast, faster than his CNS has been able to keep up with, and it's catching up with him. (For example, those two 10% cuts that seemed to go well at the time.) This is a common, almost universal experience in tapers. There's a lag time effect that people don't take into account.

 

Here's something I wrote recently in another thread to explain it (with a couple of edits because that's how I roll):

 

***The problem is that our brains remodel and rewire themselves to adapt to the presence of the drug while we are taking it. These changes take place gradually and cannot be undone quickly. There is usually a certain amount of resilience built into our amazing nervous systems, but as Alto says, they're not made of rubber.

 

We remove some of the drug and the body begins to try to remodel the nervous connections to rebalance.  It manages to get a partial balance, not robust but adequate. Then we remove more of the drug when in this state, and the body/brain continues to try to remodel; the adaptation is enough that we can function, but still not really strong because there hasn't been enough time. If we keep removing faster than our brains can adapt, our balance becomes more fragile and precarious.

 

Then we remove even more, and even more, and I think eventually we get so far ahead of our ability to heal and remodel the brain that people experience a "crash" or just go into a state of ongoing unstable withdrawal that doesn't seem to ever settle down.

 

I suspect that we can get into a state of withdrawal where the brain just can't rebalance itself because the chaos caused by the withdrawal is interfering with the chemical processes required to heal and rebalance.

 

That's the mechanism that I speculate is behind this "lag time" phenomenon, and this is why I am such a strong proponent of just holding and not changing anything when you get unstable. (And of course of slow tapers with long holds, so we don't get ahead of our brain's ability to adapt in the first place.)***

 

I think your husband's best hope at this point is a slight updose back to the 4.4 and then a long hold, at least six weeks (nothing wrong with a couple of months though) followed by a slower taper (because yes, most people have to go more slowly at the end of the taper).

 

I also think he needs to read some of the posts in this forum himself, because in my experience people generally have enough trouble taking this kind of advice when they get it first hand and read other peoples' stories too. Mostly we don't have much success with second-hand advice and helping here.

 

There's a state we get in when tapering, where we just get obsessive and sick and we just want to cut, cut, cut, and it's impossible to see that the cutting is what's harming us. I experience it regularly myself. I consider it another withdrawal symptom caused by derangement of my neurotransmitters and HPA axis making it difficult for my frontal lobes to function, so I can't think well and rationally. When someone's in that state it takes a while to talk them down and usually they go through a lot more suffering first.

 

It's up to him, but getting off faster isn't going to make the suffering go away. There's no way to accelerate the healing and remodeling process that his brain has to go through, either while still tapering or after he gets off the drug. It's not the drug that's making him sick, it's the fact that his brain is adapted to the presence of the drug and he's yanking it out faster than his brain can adapt to its absence.

 

And as bad as it is today it can definitely get worse. Just ask the folks here.

[mammaP]

Very well explained  Rhi! 

[MrsWDSyndrome]

Thank you everyone for your very thoughtful responses.  Nothing you suggest comes as a surprise and that's good!  I really just wanted to a kind of consensus that by and large, slow and steady is the way to go, and at this point maybe even slower and steadier.  This process has just been surreal, and now, with just 4 mg left to go, after 19 months of benzo w/d, there's that little part of your brain screaming "JUMP!" and on the benzo board my husband is seeing a few members jump when they get to three or so mgs.  It seems wrong, and it's good to get reinforement that it is.  There's a good chance he will be joining here.  I think he's just going through a bit of withdrawal forum exhaustion, but for the time being I will check in with questions and follow ups.  As it is, I read a post in the Family and Friends section last night that pretty much blew me out of the water, the one about what to expect when a loved one is in withdrawal.  Wish we could have seen that prior to all of this.  Better yet, I wish his doctors had!  Thank you all!

[tezza]

Please don't jump or even get in a hurry, you want to be able to stay off when you get off and that takes time. I wouldn't taper any time soon, if I were you.

 

Take care and just hang in there.

[Rhiannon]

The benzo boards these days are not good sources of advice or support. At least not Benzo Buddies. The kamikaze gang has taken over. That's why I'm no longer there, I just got tired of hitting my head against the wall trying to convince people it's possible and helpful to taper safely.

 

If you follow peoples' threads there, you will see that the aggressive style of tapering they do does not lead to good outcomes. (Not if you want to be able to hold a job and keep your marriage and that sort of thing.)

 

Oh, and I am well acquainted with that little voice saying "jump!" or "cut cut cut more more more!" I actually think now that when that happens it's another withdrawal symptom, brought on by a combination of stress hormones/cortisol imbalance due to withdrawal, and neurological disruption which disables frontal lobe (logic, planning) functions. I try to treat it like any withdrawal symptom--as a sign that I'm going too fast and it's time to hold for a while.

[MrsWDSyndrome]

Phew... symptoms seem to be lightening this past couple of days.  Thanks again.  Rhi, I especially appreciate your responses.  My husband is definitely going to keep this very slow - I will make sure of it!   We agree with the benzo boards getting very kamikaze. I think he really needs to, and is getting toa place of acceptance that this is a process he will be going through for the long haul, even when he's down to only 4 mgs.  He did taper faster from the 30 mgs to somewhere around 10 or so, but he did so at a HUGE price.  Now, in hindsight, we realize that he became completely hypomanic and experienced crazy personality changes and nearly threw his whole life away.  It seems that now that his benzo w/d has ended,  more or less, and he's slowing down his remeron taper, he's still suffering when he makes the cuts, but he's not doing the Jekyll and Hyde thing.   I can't believe this stuff is legal.

[wulfgar]

Try to think that 4 mg is a small amount and it is not causing much harm (side effects) at that small dose. Only a quick taper can do that now.

[MrsWDSyndrome]

Thanks Wulfgar, that's a good thing to keep in mind.  I posted a question on the Tapering section if anyone would like to take a stab at it.  It addresses something we both are trying to understand better. Basically it boils down to "How do you know when you've hit stabilization?"  Do you actually feel good, essentially symptom-free, or just that the misery comes down to a more manageable level? This is something that seems pretty basic and essential in tapering safely, and something we're yet to feel like we've nailed. My always optomistic husband is pretty much convinced he'll never feel good while still on the remeron!  I'm hoping he's wrong but I really don't know.

On a positive note, MrWD seems to leveling out with his symptoms. I won't say "stabilizing" since we're still trying to figure out what that is!  But he's definitely at the very least, en route to stabilization... I think.

[wulfgar]

For me the most prominent WD symptom is insomnia. Remeron/Mirtazapine lowers cortisol and blocks adrenaline receptors. When I taper i feel the effects of adrenaline and cortisol. Anxiety and insomnia etc.

 

The effects of Mirtazapine during 24 hours between doses differs a lot. For guys almost half of the drug have have been eliminated when we take the next dose. There seems to be very few who tries to take Mirtazapine two times a day so i can not suggest this method. If my problem with insomnia was not so bad i would definitely have tried this though.

 

This is my method for taper (i have problems following it though for the urge to get of is quite strong for me also!) I use a diary to monitor sleep and other symptoms. When sleep/symptoms have stabilized and I've been on the same dose for more than 3-4 weeks its time for next cut. I suggest writing down a number of how the symptoms are between 1-10 where 10 is the worst its ever been. For sleep i estimate between 0-8 on how good my sleep was. I do not measure time durning the night as that can interfere with sleep. So if i know i only slept 3 hours but feel more rested that can make maybe 5 on my scale. If i slept maybe 6 hours total but feel awfully unrested that can be maybe a 3 on my scale. I think a diary is very important! We forget how things where.

 

A good exercise is to try to define what symptoms is because of side effects and what symptoms is withdrawal. (Had lots of side effects on higher doses) There is no correct answers to this but for me at my low dose, i think most symptoms is from the withdrawal process and that i need to go slow for this reason.

[MrsWDSyndrome]

Thank again everyone.  I'm sorry I don't get to post more often, but please know that I read everything and we appreciate all of the good advice we get here.  And it's so nice to know we're not alone (sort of, but that sounds kind of sadistic at the same time!).

 

Anyway, update:

It has been 44 days since my husbands last cut of .4 mgs - which brings him down to 4 mgs.  Wow, lot of 4's there!  I will mention that this has been his longest hold in a long time. Maybe his longest hold yet.  The first 20 days or so were just hell for him, real acute w/d symptoms, but still managing to go to work on a daily basis and fulfil the daily requirements of life.  That said, it wasn't easy, lots of crying spells, intense panic, tinnitus, his never ending "head symptoms," nausea and cramping, etc.  After that 20 days and right up until now he's hit this very familiar cycle which has been the norm  pretty much since day one of this remeron taper. This is his daily experince, in a nutshell -

 

He wakes up early in the morning (about 5 am) with super intense anxiety, fear, shaking, not feeling like he is going to be able to cope.

By about 7 or 8 am things start to settle down for him.

Around 10 or 11 am, intense dizziness and "heavy head" feeling, somewhat short of breath, depressed, anxious, sometimes seems like food revs him. This continues most of the mid-day until...

About 5 pm or so, he feels pretty much great, fine, happy dad/husband.

Takes his remeron around 7:30 or 8.

Passes out hardcore for the night.

Wash, rinse, repeat.

 

So the questions -

Because this is so cyclical, and daily, is what he's experiencing simply the effect that remeron has on him?

Is it possible that the reason he feels so good by 5 pm is because the remeron is no longer really affecting him by that point? 

Is this stabilitazion for him, even though he still feels so many horrible symptoms first thing in the morning (cortisol mornings?) and mid-day?

Alto, I'd love to hear your opinion as well.

Thank you all!

[Altostrata]

I don't know, MrsWD. We have a few people here who are having very odd reactions to mirtazapine and dosage reductions.

 

Why does your husband take his remeron around 7:30 or 8? Does he go to bed then?

[MrsWDSyndrome]

I don't know, MrsWD. We have a few people here who are having very odd reactions to mirtazapine and dosage reductions.

 

Why does your husband take his remeron around 7:30 or 8? Does he go to bed then?

 

He knows that once he takes it it will knock in out in about an hour or two, so yes, he takes it around 7:30 knowing that he'll be sleeping by 9:30.  We've wondered about the possibility or sensibility of splitting up his dose and taking it twice daily but it scares us to do anything too drastic to his system since he's clearly so incredibly sensitive. Neither of us want to taper too quickly, for certain, but this crazy cycle he experiences does make us wonder if it's the withdrawal or just him having an odd reaction to the drug.

[Altostrata]

I'm not sure what's going on. The stability of the pattern suggests it's due to the drug, either adverse effects or withdrawal symptoms.

 

Does he take any other drugs or supplements in the morning?

 

Remeron has a long half-life, which complicates things. A dose taken at 8 p.m. is still in effect, although somewhat diminished, at 8 a.m., though I suppose that with a dose as small as 4mg, it might be metabolized faster.

 

It sounds like your husband is experiencing the early-morning cortisol surge like so many of us. Many of us also find this wears off in mid-morning.

 

The "heavy-head" etc. at 10 or 11 a.m., which would be about 14-15 hours into Remeron's half-life, sounds like symptoms of Remeron depletion, or maybe a reaction to an active metabolite that's been produced as the drug has been metabolized.

 

Your husband's prior benzo withdrawal may have sensitized him to these reactions.

 

Feeling better in the late afternoon is also a familiar pattern for people with withdrawal symptoms.

 

http://www.drugs.com/pro/mirtazapine-tablets.html

Plasma levels are linearly related to dose over a dose range of 15 to 80 mg. The mean elimination half-life of mirtazapine after oral administration ranges from approximately 20 to 40 hours across age and gender subgroups, with females of all ages exhibiting significantly longer elimination half-lives than males (mean half-life of 37 hours for females vs. 26 hours for males). Steady state plasma levels of mirtazapine are attained within 5 days

[MrsWDSyndrome]

Thank you, Alto. This is very helpful. In the morning he will sometimes take a magnesium, but otherwise, no.  I agree the benzo withdrawal definitely sensitized his already sensitive system.  Do you have any inclination either way as to his next step?  Do you think it's best he keeps holding, or start thinking about going ahead and doing a small cut? 

[Altostrata]

I guess so. Maybe a smaller amount will have fewer side effects?

[MrsWDSyndrome]

That's his hope, that a smaller dose might equal less side effects (or whatever it is he's experincing).  I think we'll start planning for a conservative .2mL  cut in that case.  Thank you again Alto!