Need advice on updosing due to SEVERE instability -LOST and WORRIED

My son cannot leave his room;  he is in severe distress, and it just seems to be getting worse, even though he updosed some in the past month.  Blank mind, severe depression, difficulty speaking, cannot interact with others, cognitive problems, cannot care for himself.  Says he cannot go on like this.

 

I know this is all from benzo withdrawal.  Two weeks ago, before we knew this was all probably due to withdrawal, he was put on abilify for what his doc thought was bipolar.  He took it for 10 days, but things just kept getting worse on it - so now he has stopped that for past 4 days. 

 

My son and I are both convinced this all fits with benzo withdrawal/tolerance and NOT bipolar. He was doing well before making cuts to diazepam - see signature.  I do think he has kindled from previous rapid withdrawals, and his other poly psych drug withdrawals in the past year have probably made things worse. 

 

With his current SEVERE symptoms,  I am confused about whether he should updose more to regain some level of stability before he starts a slower taper, or if he should just keep reducing from where he is now and get through it somehow.  I keep giving him pep talks and reassurance throughout the days, (and nights) - which helps temporarily.  But wondering if he should just updose more - or if that will make things worse in the long run.

 

How do you balance just getting off with being able to function once kindling has happened?

From the signature, it looks like he updosed before and it didn’t help much?  It seems the change in meds (recently getting off the Abilify) has likely screwed with him more. What other recent changes have there been? He is still on the depakote? Has he tried just holding until things started to stabilize?

The updose from 2mg to 4mg did help some.  The move from 4 to 4.5 has not helped much.  But you are correct that going on and off abilify during this time confused things and definitely made things worse - with much more agitation, anxiety and insomnia, physical restlesness.  The physical restlessness is improving since stopping it.  The rest is still BAD.

 

He is still on the depakote ER at 1000mg twice a day.

 

I was going to have him just hold the diazepam at 4.5, and keep depakote the same as it has been, and wait until he gets all the abilify out of his system (takes 3 weeks, its only been 5 days).  Then taper more slowly.

 

But the severity of his symptoms right now has me wondering if he should updose to the level of diazepam when he was last stable (5 mg diazepam which he was on along with current depakote dose) 

The updose from 2mg to 4mg did help some.  The move from 4 to 4.5 has not helped much.  But you are correct that going on and off abilify during this time confused things and definitely made things worse - with much more agitation, anxiety and insomnia, physical restlesness.  The physical restlessness is improving since stopping it.  The rest is still BAD.

 

He is still on the depakote ER at 1000mg twice a day.

 

I was going to have him just hold the diazepam at 4.5, and keep depakote the same as it has been, and wait until he gets all the abilify out of his system (takes 3 weeks, its only been 5 days).  Then taper more slowly.

 

But the severity of his symptoms right now has me wondering if he should updose to the level of diazepam when he was last stable (5 mg diazepam which he was on along with current depakote dose)

 

It’s likely updosing a little could help (esp w the akitehsia) but there are trade offs.  I wouldn’t touch the depakote. If you updose it may not help at all, make things worse, or help insignificantly. This kind of decision IMO depends on the patterns he’s experienced so far and a judgement of how much he can withstand until things normalize a bit. I’m tend to think it’s better to just wait and ride things out but there certainly circumstances and good reasons to updose. I would also try to remember how long things can take. Sometimes it’s hard for caregivers to see their loved ones (son in this case) struggle so much but this is a marathon mindset on the order of months and years to get back to some normalcy. I would put the idea of kindling out of your mind. No definitive evidence and not helpful for tasks at hand. I hope things start turning around soon.

I keep giving him pep talks and reassurance throughout the days, (and nights) - which helps temporarily.

 

I will just add that this likely helps beyond what you can understand.

Thanks Selzerer.  That helps a lot.  My gut feeling has been to ride this out.  He just want to do something to feel better now.  I'm trying to help him see that, like you said, this is a marathon - and there is no quick fix for this. He is trying to wrap his head around that - wondering how he can do this for months.    I've been stressed about the "kindling" idea - so good for me to just forget about that and focus on the "tasks at hand".  It's really one hour at a time right now.

Thanks Selzerer.  That helps a lot.  My gut feeling has been to ride this out.  He just want to do something to feel better now.  I'm trying to help him see that, like you said, this is a marathon - and there is no quick fix for this. He is trying to wrap his head around that - wondering how he can do this for months.    I've been stressed about the "kindling" idea - so good for me to just forget about that and focus on the "tasks at hand".  It's really one hour at a time right now.

 

Good luck and just to clarify, he’s making the decisions right? I would talk through it with him but it’s gotta be up to him. That lack of control and autonomy makes things much worse. Just about anyone here who’s been through this will attest to this. I would encourage him to post here himself, if he wants, for support.

Yes, he is making the decisions.  But right now, he leans on me to help him figure out what to do because he says he can't think at all.    I have encouraged  him to get some support through the forum himself, but he is not well enough to even get on the computer these past few weeks.  He says he is having difficulty even reading, and can't remember anything he read.  He looked around on the site some, but became to discouraged at how long this all was going to take and how ill many of the people still were.  It made him more depressed.  Right now, all he can do is sit in his room with yellow light, shades closed, and  headphones on to block noise.     

WM, You are being given EXCELLENT advice by Seltz.... and I am hoping your son considers this whole process a RECOVERY.  It is withdrawals technically but in order to get off everything and healthy (which we are pulling for him to do PROPERLY - not C/T) - then that is the what we need to do  - recover from the psych drug damage.  Is he continuing with the depakote?  We can't give medical advice but I am supporting a taper of that as well but after some stabilization. You are a great Mom!

The depakote is likely causing a lot of the brain fog/having trouble remembering/reading/understanding things.

 

I would say another updose would likely not harm him. It looks like he has had a lot of med changes in a relatively short period of time. Are you working with a psychiatrist that you are comfortable with? Does that professional want him off benzos? Why are you tapering now? The answers to these questions I think would guide your next steps. He is young so you want him to have hope and a high quality of life.

The depakote is likely causing a lot of the brain fog/having trouble remembering/reading/understanding things.

 

I would say another updose would likely not harm him. It looks like he has had a lot of med changes in a relatively short period of time. Are you working with a psychiatrist that you are comfortable with? Does that professional want him off benzos? Why are you tapering now? The answers to these questions I think would guide your next steps. He is young so you want him to have hope and a high quality of life.

 

Yes, I think the depakote is giving him some brain fog.  His psychiatrist, however does not want to reduce depakote any.  The psychiatrist does not think that the cuts in diazepam he made from 4-->3-->2 in a matter of weeks were of any significance.  (my son made those on his own because he was feeling pretty good at that point, wanted to get off as many meds as possible,  and didn't realize it was too fast)      This doc also thinks that people can stay on benzos for along time and they don't cause problems, and getting off them should be no problem.  Nothing else changed except the benzo tapers that could explain my sons return of severe symptoms.  I figure this next visit the doc will try adding another med if he is not doing better -  yuck.  This last one (abilify)  was TERRIBLE.  This psychiatrist is our only option in the area.  I did read that antipsychotics make benzo withdrawal worse.

 

Right now, my son would be happy to not taper for now, and wait and go more slowly in the future.  He would like to  just get back to how he felt before he made the cuts down from 4mg, when he could somewhat function.  But he can't seem to get back there again.  So wondering if he should go up further and stabilize, vs just keep going and get off the stuff.  I do think many of my sons psych issues these past 2 years were from withdrawal tolerance, and forced rapid tapers off benzos (15mg valium-->10)  when he left the hospital.  These were intepreted as "bipolar relapses" and more psych meds added.  Need to get off this merry-go-round of meds somehow.

 

Hi mom, you have been given some great advice, at this point I believe updosing  to 5 would be fine since that is where he was last comfortable.  Other than that change, imo, he needs to hold everything else, not change anything, just hold.  Every time you make a change, add a med, take away a med, do anything, his brain and central nervous system is becoming more sensitive and unstable.  He needs time, patience, and holding to stabilize.  It wil not happen in a couple of weeks, I won't lie to you.  This is a long process.  Stabalizing doesn't mean he has no symptoms, it means the symptoms he has can be tolerated.  There is a Long Hold Support Group thread on here, which might be a good place for him to be awhile.  Just go to the Homepage and scroll down to Support Groups.

Look down and you will see it.  You are doing a wonderful thing for your son, never forget, this is very hard on you too.  Please reach out anytime we can help.  Mary 🍀

Thanks Mary.  I appreciate the support.  And good to be reminded that this is a long process.  Good to know about the long hold support group.

I came across your post and would like to share my experience. I’ve been tapering for a while. In the beginning there were a lot of hiccups or more accurate....nightmares. Different things threw me into w/d. The one thing I can say is...I always got better as I held. During the time, I would be freaking out reading about kindling, tolerance and everything else possible. I just knew it would never end. I did get better though. I am doing a slow...I mean slow taper off. Mostly, I’m w/d free...unless I get impatient and try to rush it. If I do my body lets me know. I will take my time...however long it takes before I will suffer the way I did in the beginning. You deserve to be praised and pepped talked too. 😍  Being a care giver in this situation is hard. All I can speak for is my experience but ever time something happen and I went into full out...withdrawal hell...if I held it eventually passed. Now during the time if you’ll read some of my past posts....I just knew I was going to be like that forever. It passed though. I started out at 15mgs and am at 2 1/2 mgs of valium still working my way down slowly. Some would say too slow but I choose a life I can function with. If slow it takes to not suffer...then I choose slow. Good luck and God bless you for being such a good mother.

I am sorry to hear this. These symptoms sound so severe that they seem even beyond the worst of benzo withdrawal. Although no one can be sure. I agree a professional is required here (but we always have to be careful they don’t lead us down the wrong path).

 

It is possible that bipolar depression is at play here. The depakote doesn’t seem to be working and it sounds like lithium is not an option. Maybe lamictal ( the other major mood stabilizer) would do  the job.

 

It would be nice to improve his mood before continuing the taper. I think a professional ( psychiatrist) is needed here. Or maybe changing if the current one is missing the mark.

 

Hoping for a speedy recovery!

I dont know much about kindling, but I had to updose a couple times while tapering..but never a lot. I only ever replaced the last cut I did. I'm not a doctor, but I can tell you adding and removing meds its probably not a great idea at this juncture. certain foods caused me problems while I was tapering, let along adding psyche meds. His brain is probably really out of whack because of everything. I would suggest not cutting for a couple weeks. let the brain level out, then resume. it may take a bit of time, I know it took my brain at the longest 3 weeks to really level out after a mishap like messing up my dose or cutting too hard. he may not feel totally normal after that time, but with time it will get better. like I said I'm not a doctor, but adding meds to an already upset brain is going to aggravate it...I'm off of benzos for 1 month and 3 weeks and my body does not tolerate anything except Advil. keep close to him, make sure you check in with him and maybe make him something to eat that he likes, get some movies he enjoys.. make him as comfortable as you can during this rough time.. spend time with him if he wants you to and just be there as it sounds you already are. I think its great you are so involved. a lot of parents and loved ones don't do what you are doing..and your concern and consistency is so important through this. also, updosing may not be totally effective right away. for whatever reason it was a delayed reaction for me. if you are really worried, I say yes, updose, but not the entire dose. I see far to many people saying they went all the way back up to a starting dose after tapering hard and for a long time. I hate to see it. The sad truth about benzo withdrawal is that it is only through the pain that we get what we have been working for. there is no really truly comfortable way. I've enduring the scariest, most painful things while tapering but I lived through them and I am doing so much better for it.. it takes time, and it will get better. Again, please keep being there for him. Even if he is moody, or miserable, or lethargic, you being there is a life line that so Many people tapering don't get.  If you are seriously concerned about his mental state, or are worried that he is a danger to himself obviously you need to bring him to an emergency room and seek help..but otherwise, this is really sort of part of it. It's agony at times and he will get through it if he holds on and waits. I know its so hard...but he can do it, especially with support and love. again, make him comfortable and hang out with him if he's okay with that. Get him something to keep his hands busy even if its hard to do, its still an option. Keeping my hands busy saved me. Wishing you lots of luck, here if you need.

I'm certainly not in a good place to give advice but I want to say I feel for your son.  I do not have bi-polar, but have suffered from MD and GAD for many years and taken AD for them.  I have a highly sensitive CNS - have for many, many years.  Even during good times, vitamins would have a crazy effect on me and I have major blood sugar changes, low blood pressure.  I also am a rapid metabolizer.  I did not start my taper in a great place, was already in tolerance and cut too quickly, held too long and then had other meds.  I still keep looking for a way to help ease things but I know that's likely not to happen.  Now, I'm also feeling the effects of it all and it truly is the benzo w/d for me, on top of the GAD that I already have that DO make me feel like I have bi-polar.  I have a lot of the horrendous symptoms that your son is experiencing and they are awful.  I'm so sorry your son is going through this.

Wisconsin Mom,

 

Your son has a very complicated medical history with numerous meds stopped and started. I usually do not recommend an updose.

 

In your sons case, however, it may do no harm. There are three things to consider in my opinion.

 

1. Will it help him if He Updoses?

 

2. Will it make him feel worse than he already does?

 

3. Will it do nothing for him at all but just add to his taper off diazepam when he is ready to taper?

 

These decisions are your sons  and you to make together as you talk through all of this.

 

And has been stated before by others here, when a decision about updosing is made, it is probably best to hold to attain stability. His central nervous system is very unstable by all these med changes, and needs a good, long hold. A long hold can vary in length of time, but it a very useful way to calm the CNS down when various CNS neurotransmitters are all “firing off different messages” to your son.

 

The long hold is just that. A long hold of maybe months or longer. He has his whole life ahead of him since he is so young. He has the best gift of all and that is time in a situation like this. We all want off these medications as quickly as possible, but such is not always possible.

 

And please watch what his doctor is advising and prescribing. Doctors who should be experts are often not. They are people also, and the brain and CNS are often as much a mystery to them. Often, here on BB, we end up teaching the doctors themselves as we are the patients and we know ourselves better than anyone else. And we are not clones of each other. We are individuals who are all different in the way these meds affect us.

Thank you to all for the support and ideas.

 

My son decided tonight he had no other choice than to go up to 5mg - took an extra 1mg tonight, in addition to some seroquel to help him sleep.  I think it is a wise choice given his circumstances.  I'm wondering if he may need to go up more.

 

He remains desperate and very depressed, anxious and irritable.  I'm keeping a close eye on him.  I hope he doesn't need to be hospitalized, but will take that step if need be.  He says he is safe at the moment.  He had been doing so well up until he made the quick taper from 4-->3--2mg of valium over a few weeks.  I hope this stabilizes soon.

Wisconsin Mom,

 

Since he decided to updose to 5 mg in addition to adding in some seroquel, I would say that it is probably best to wait and see how he does over time (and lets that abilfy get out of his system) before doing anything else.

I'm no expert Wisconsin mom.  Who is? 

 

I think your son has made a wise choice, and agree he might even need to go up a bit more. 

 

He is not simply dealing with benzo withdrawal, he is also dealing with bi-polar disorder.  I take my hat off to him.  This would be a very difficult time, and he clearly needs respite.  This coming from a mother with adult child schizophrenia. 

 

We don't know if updose will work, but if he is really unstable he has to do something. 

 

Dee

Thanks, Intend and DWG.

 

Yes, I agree - trying to encourage him to hang on and wait to stabilize.  But also need to respect his decisions.    He says he can't go on feeling like this much longer.  He was hospitalized 8 weeks last year for suicidality after he had to stop lithium - which had kept him stable all through college.  I feel like this is where things may be headed again.  That hospitalization was not good.    Then re-hospitalized 3 more times (after they cut his benzos each time - figured that out in retrospect)  I feel like he needs to do what he can to avoid things getting that bad again.  He is hoping the updose and getting some sleep with the seroquel will help him avoid getting worse.

 

Interestingly, things got much worse the past 2 days and so did his hives which occur in the heat - head to toe, including his scalp. They are painful and very itchy - but go away when he cools down.    The weather here has warmed up quite a bit, and he tried to exercise the past 2 days - just easy walking.  But it made him itchy and his hives came back.  I do wonder if some of his worsening is due to high histamine in his brain .  The hives had been better back when he was stable before he had tapered from 5mg.    He started the hives a year of so ago after he was cut from 15mg of valium to 10mg all at once after he was discharged from the hospital (what were they thinking!) Needless to say, he had to be re-hospitalized shortly after that!  But I do wonder if the recurrence of the hives with the heat and exercise is making him have higher histamine and affecting his brain.

 

He is a really really good kid.  So caring and compassionate, very smart. Tries to take good care of himself. It is so hard to see him like this. 

 

Hi Wisconsin Mom - I think you got some great advice on here already.  I updosed a few times and it helped me. He does need to hold to stabilize. Even an updose takes time to build up and work - like even up to 10 days. As a fellow mother, it must be so unbearable to see your son suffer so much and feel so desperate to help him. But please know that you being there and reassuring and helping to find answers is so incredibly helpful. I am in my early 40s and my mom has been my rock thru this. She was there in the worst of it, letting me cry for hrs on her shoulder. She reassured me nonstop and every time, it was like new information and really did help, even for a moment. She would sit by me as I measured my doses. She came to the doctor with me. She read on here too. You ARE doing what you can but no one can magically cure this stupid hellish ridiculous suffering. The only way out is through. My mom took up a day meditation practice and she said that helped her cope with my suffering. She prayed a lot too.

 

I will say, though, that I relied on her heavily for a long time in my decision making about dose, updose, taper stuff. But my best and most successful decisions were the ones I made myself- listening to my body and intuition. I was scared to death and didn’t trust myself but eventually I learned how- with a lot of personal growth work and soul searching. It’s grwat that you’re helping with decisions but only he knows what his body is telling him.

 

And I think a much slower taper is in order. The Ashton method is way too fast for most of us in here. You can see my sig for rates but basically I dropoed 0.25 mg V per month. That’s a common rate I see for sensitive people and I came up with that rate by studying BB for days and calculating rates. Also, I would recommend considering a daily microtaper. Much smoother and takes the guesswork out of this- once you get going. There is a support group for this if you need help.

 

Finally, know he will get better. It is severe- I’ve been there. What kept me alive was my mom and not wanting to leave my young kids mother-less. Outside of that I had no desire to go on at all. But here I am now- almost done tapering and I feel soooo much better. Not 100% but definitely functional. Taking care of my kids, working part time, doing stuff around the house, socializing, short vacations- I’m full of life and enjoying life. It was worth hanging on even in the darkest months. You and he have to accept this and have to accept that the body will heal. 

Thanks Libr.

 

Once he stabilizes he now understands he needs to take it much more slowly.  I do think the DLMT method to go down very slowly will be best for his very sensitive CNS. 

 

How long do you think is good to stabilize before starting the DLMT at 0.25mg per month?

 

 

Thanks, Intend and DWG.

 

Yes, I agree - trying to encourage him to hang on and wait to stabilize.  But also need to respect his decisions.    He says he can't go on feeling like this much longer.  He was hospitalized 8 weeks last year for suicidality after he had to stop lithium - which had kept him stable all through college.  I feel like this is where things may be headed again.  That hospitalization was not good.    Then re-hospitalized 3 more times (after they cut his benzos each time - figured that out in retrospect)  I feel like he needs to do what he can to avoid things getting that bad again.  He is hoping the updose and getting some sleep with the seroquel will help him avoid getting worse.

 

Interestingly, things got much worse the past 2 days and so did his hives which occur in the heat - head to toe, including his scalp. They are painful and very itchy - but go away when he cools down.    The weather here has warmed up quite a bit, and he tried to exercise the past 2 days - just easy walking.  But it made him itchy and his hives came back.  I do wonder if some of his worsening is due to high histamine in his brain .  The hives had been better back when he was stable before he had tapered from 5mg.    He started the hives a year of so ago after he was cut from 15mg of valium to 10mg all at once after he was discharged from the hospital (what were they thinking!) Needless to say, he had to be re-hospitalized shortly after that!  But I do wonder if the recurrence of the hives with the heat and exercise is making him have higher histamine and affecting his brain.

 

He is a really really good kid.  So caring and compassionate, very smart. Tries to take good care of himself. It is so hard to see him like this.

 

Dr's don't, in most cases, understand the processes of the brain and central nervous system while they are trying to adjust to each different medicine, unfortunately, a lot of us, have lived through it.

My heart breaks for you and him.  I can't begin to imagine.  Please, remember this is very hard on you too, you need to find ways for self care also.  Your thought process makes sense to me, but I truly don't know.  Maybe someone will post that has had that experience.  Love, Mary ♥️