My brother is in benzo hell

Hi, my name is Steve and I’m from Australia. My brother has been on prescription benzodiazepines for 12 years. He is beside himself with what I believe are withdrawal symptoms and we can’t get any proper help through the public health system here. He is in a desperate situation. I am hoping your forum will be able to point me in the right direction fast. Many thanks in advance. Steve.

Hello Steve Welcome to benzobuddies

 

We are glad you joined,  It’s so nice of you to support your brother.  I am sorry Matt is suffering right now, we will do our best to help you.  Can you tell us a little more?  What is your brothers benzodiazepine situation at the moment?.  Has he stopped or does he want taper information?  We are here to help so please let us know how. 

 

I am going to leave you with some links to resources:

 

Planning Your Withdrawal (Taper)

Withdrawal Support (during your taper)

The Ashton Manual 

Colorado Consortium Benzodiazepine Deprescribing Guidelines

Post withdrawal recovery support.   

 

 

Welcome Aboard

Magrita

 

Hi Mattsbro

 

I’m so sorry to hear about your brother’s circumstances.

 

I’m also in Australia.

 

While we wait on more information to get better overview of Matt’s current situation, I just wanted to share this below link.

 

If you are in Victoria you can access support and practitioners here. If you’re in another state, you won’t be able to access the practitioners, but you can still call the support line (I’ve done so several times) to talk to someone who may be able to help Matt navigate his way to a practitioner in your particular state of residence, or at least offer recommendations.

 

https://www.reconnexion.org.au/

 

WS

 

Thanks for the replies so far.

Here goes.

12 years ago he went onto 1.5 mg Oxazepam (Serax) for anxiety,panic attacks and insomnia due to work stress, stayed on that dose for 10 years coping well. No other therapy.

2 years ago decided to try Valium for unknown reason, went for 1 month, sleep went away so stopped.

Was put straight back Oxazepam plus 10 mg Lorazepam (Ativan) and was back to normal but was tapered off the Loraz 1mg per month until he was at 5mg and big trouble started.

No sleep, severe agitation, anxiety resulting in partner of 12 years leaving. Was forcibly tapered off the rest of the Loraz as it is now listed as a poison and only allowed for very short term.

So now this is his daily dose-

Before bed-

30mg Oxaz, .625 Clonazepam (Klonopin), 15mg Mirtazepene. Sleeping ok. The .625 Clonaz is being tapered due to bad daytime"sedation"

Daytime-

3 X 15mg Oxaz to be used PRN (as needed) All hell breaks loose.

All day severe agitation, anxiety, pacing, walking on the spot, grabbing at arms, hands, brain fog, can't think straight enough to even fry an egg.

Extreme worry, stammering, agrifobia, suicide talk, extreme OCD.

The 15mg Ox 3 times a day has little to no effect, 2x 15mg at once does calm him but only for a few hours then back to the above.

I just spent 3 days with him observing him closely and it is so distressing, he is only barely surviving.

He lives 4 hours drive away so my sister and I keep him fed so that's going ok atm.

He has minimal support through his local health services and it seems like his GP is not interested in helping other than just represcribing.

We have just contacted Reconnections, we are in Victoria.

His daytime symptoms are really worrying us, is it withdrawal, tolerance or otherwise?

Thanks Steve.

 

Hi Steve,

 

I’m just about to take a nap, so I’ll reply later today (unless magrita gets in first), but before I go I just want to thank you for being so thorough with the information you’ve provided.

 

I do see what’s going on…

 

WS

Hi Steve

 

The positive here is that the GP is willing to keep prescribing. Matt doesn’t need the GP to help him taper, or to even know he’s tapering. This means he will have a constant supply of medications to see him through his taper. Unfortunately, this seems to be the only option, as the tolerance/withdrawal symptoms are the result of the medication, having hit tolerance for his doses (especially his daily doses of 3 x 15mg). This is clear because of how he experiences a few hours relief when taking a 30mg dose.

 

I’d be interested in knowing what dose of Valium Matt was prescribed 2 years ago, and what dose of Oxazepam he was on when he made the brief switch. I’m also assuming the doctor who made this switch to Valium forced a direct switch, rather than slowly crossing over in line with the Ashton Manual guidelines. All benzodiazepines (although they are all benzodiazepines) have a significantly different effect on the brain and in terms of their therapeutic affect. They feel different. I just need to ask you - Are you sure Matt’s initial dose 12 years ago was 1.5mg, or was it 15mg, as Oxazepam is only available in 15mg and 30mg in Australia.

 

The reason a switch from Oxazepam to Valium should be a slow crossover is because Oxazepam is a short half life benzodiazepine and Valium is a long half life benzodiazepine. Because of this, the Oxazepam has a quick onset therapeutic effect, it also leaves the body very quickly, whereas Valiums long half life means that it takes a considerable amount of time to build up one’s blood serum levels, days to a week. The problem this creates in regard to a direct switch is that once you stop taking the Oxazepam and begin the Valium, the Oxazepam leaves your body very quickly and because the Valium takes so long to build up blood serum levels, it can’t buffer the withdrawal effects from the Oxazepam until it’s had the time to build up in your body, and this can cause a significant period of withdrawal until the valium has had the time to build up. Oxazepam is also about half the potency of Valium, so if Matt was on 15mg and switched to Valium, the Valium dose would need to be about 7.5mg to compensate.

 

I have personal experience with Oxazepam and became tolerant very quickly (within a couple of months). It’s therapeutic effect (once tolerant) only lasted about 2 hours before I would experience interdose withdrawals.

 

So it seems clear to me that because Matt is taking 30mg Oxazepam + .625 clonazepam at bedtime, he’s sleeping okay, however, during the day, his doses sit below his tolerance level, so they provide little to no relief at all and is experiencing consistent interdose withdrawals which can create additional complications. The problem here is that Matt can’t keep increasing the doses (even if the GP was willing to prescribe higher doses) as he would simply become tolerant to that higher dose and end up in the very same boat. So I would suggest he has no other option but to taper of the benzodiazepines altogether, because tolerance is actually causing the reverse affect to which the benzo’s were originally prescribed.

 

Taking benzodiazepines prn is also problematic because once one develops dependency, this is where interdose withdrawals surface and the therapeutic effect seems to wear off very quick, especially with short half life benzodiazepines like Oxazepam.

 

It’s very clear that Matt is very destabilised because of these daytime doses being too low and he really need to find at least some level of stabilisation. Each individual is different when it comes to what stabilisation looks like for them… how intense the symptoms are at their own baseline level of symptoms. So I would suggest he needs to find a comfortable dose for all three of those daytime doses, and that may even include adding another dose and spreading them throughout the day to avoid interdose withdrawals depending on how quickly the doses are wearing off between doses. Everything I’ve expressed here is based on the assumption that the higher nighttime doses are providing a sufficient therapeutic effect to provide Matt with an acceptable amount of sleep, and this points to the daytime doses being too low and possibly too infrequent.

 

Just in regard to the valium - the upside to the longer half life benzo is that most of those on valium only need to dose once a day, twice at the most, which helps avoid those horrid interdose withdrawals and also makes tapering considerably less complicated, however it is still possible to taper from the short half life benzo’s, and many members here do so. However, some members have trouble crossing to valium and experience various complications adjusting to the different effect of the medication, so we kind of look at it as a last resort these days, but it does remain a valid option. Although I’m not suggesting Matt trying a ‘slow crossover’, it would be interesting to know the specifics about that switch two years ago, as it the reason it didn’t go well may be because the GP doesn’t have the knowledge, understanding, or experience to cross a patient over in a safe, comfortable as possible manner.

 

Obviously we can’t work through everything right here and now, but hopefully this gives you a level of insight into what appears to be going on with Matt.

 

I’ll leave it at that for now, and depending on whether magrita sees something I have missed, she may add further information.

 

Feel free to ask any questions you may have, Steve.

 

WS

 

I would like to know

 

 

So very grateful for the info WS, I will find out some more specifics about the cross over asap.

We did have a slight win today, Matt contacted me this morning and said that he had taken his 15mg PRN at 4.30 am when he woke up. He was feeling a lot better at 10.30 when I spoke to him, he even sounded like his old self.

Previously he has been holding off taking this dose until around 10 am. I have been working on him to take the dose way before he feels sick, so that seems to be a definite improvement.

Thanks again Steve.

That’s great news, Steve.

 

At the very least, it gives you directly experienced insight into inter-dose withdrawals.

 

By the time Matt normally takes his morning dose, his blood serum level has dropped so low over such a long period that when he takes that 15mg morning dose, it’s not enough to lift him back up above his tolerance level, and because the Oxazepam has such a short term therapeutic effect, none of the other daytime doses lift him above that tolerance level either, so he remains in a highly symptomatic state because he’s constantly experiencing inter-dose withdrawals throughout the day. I know you can understand this now, so that’s great!

I have some answers to a few of your questions WS.

His original dose of Oxazepam was on average 1.5 tablets....so correct it was around 22.5mg.

He couldn't remember the amount of Diazepam he was prescribed but he did remember going straight off the 22.5 Oxaz straight onto Diazepam, no crossover!!!

Thanks Steve.

Thanks for the information, Steve

 

Obviously we don’t know what size dose of Valium Matt was switched to, but 22.5mg Oxazepam would mean switching to about 10 or 11mg of Valium

 

So i think we can safely say the GP is not benzo wise, and should neither be prescribing these medications or tapering patients off them.

 

So let’s just save a slow crossover as a potential option, if done correctly, and if tapering from the Oxazepam proves to be overly complicated.

 

As I said, there’s no need for the doctor to know Matt is tapering. The ongoing prescriptions are the important thing.

 

What needs to happen from here is to get Matt on a consistent daily dosing schedule that allows him to stabilise properly before beginning a taper.  I think at this stage, Matt needs to add in that extra daily dose so his blood serum level doesn’t drop so low between bedtime and his 10:30am dose. He may also find that he needs to up the daily doses slightly, but I would probably start with adding in that extra dose and take it from there.

 

I think it’s also very important that we start a thread on the Planning Your Withdrawal (taper) Board and discuss this further there along with his taper once he’s stabilised. I’m going to ask one of the admin to take a look to see if they agree with where we’re heading, as is good to have others weigh in to avoid any oversights.

 

Talk soon, Steve 

Quick update, my brother had a GP appointment today, he was offered a 14 day trial of Olanzapine.

What’s the lowdown on this stuff?

Still no progress otherwise, non of his heathcare “professionals “ seem to think the benzos are the problem.

 

Is your brother planning on taking the antipsychotic?  What was the rationale the doctor gave for taking it?  I guess he thinks he's psychotic?

Mattsbro

Professionals can't see it because they're reading from a screen. Your brothers story and symptoms reminds me of a story I found online about a lady called Christine.There are videos of her suffering and it's truly heartbreaking.

 

I hope you find a medical professional who is aware and awake soon.

None of his healthcare professionals seem to think the long term benzo dependence is the problem, I think they hey just want an easy fix.

There’s no rationale behind it as far as I know.

I'm glad you recognize that throwing more pills at this situation probably isn't the best for your brother right now, our central nervous system is so sensitive its tough to know how he'd react to a new medication.

 

Winters sun suggested starting a thread on the taper board so we can work up a taper plan for your brother.

Hi Steve

 

I definitely think the next natural step (whilst you work with Matt to get him stabilised on the right doses) is to start a thread on the Planning Your Withdrawal (taper) Board.

 

Try not to get too caught up and frustrated with the medical fraternity, as they have simply been misled and lied to about these medications for many years. They unfortunately think everything they have been taught is the Truth, but it’s simply not the case.

 

It’s only natural that their lack of knowledge about the potential debilitating effects of these medications will lead them to conclude that someone displaying Matt’s symptom profile must be psychotic, so they will prescribe accordingly. But all Matt’s symptoms are indeed benzodiazepine induced.

 

So, let’s just focus on finding the right doses and dosing schedule to allow Matt to stabilise (allow symptoms to decrease to a baseline level) and then work together on a safe (slow) taper plan that will allow Matt to come off the medications as comfortably as possible. 

 

 

 

 

Thanks all for the fantastic support so far.

I'm very clear that the next thing that has to happen is stabilisation, something that no one is proposing. I think they just want to leave him on this inadequate dose and let him suffer, that's obvious.

So we are switching him to a new GP (hopefully) that will begin treatment through Reconnexions.

Will continue the thread on the taper board when we get things moving.

Thanks Steve.

Wow!

 

That’s just fantastic news, Steve!

 

My hair is standing on end just hearing that things are beginning to come together… with a new GP associated with Reconnexion.

 

Awesome!

Absolutely wonderful support being given here.

 

Starting on antipsychotics isn't always the right move. From what I now know were symptoms of benzo withdrawal, my doc had me on, at the max, max doses of three different antipsychotic meds -- I was miserable. Now that I'm off those with the exception of a low dose at night for sedating qualities to help me sleep, I feel like a totally different person (in a good way).

 

I can't speak to whether it's a good idea or not to take what was prescribed, but do be cognizant of the risks of taking a new med like that. It may be worth it to consider getting stable at his current benzo dose before trying to throw a new medication into the mix. Will follow on the tapering board -- wishing you all the best.

Hey Buddy, I just wanted to say thats awesome you’re on here doing the research for your beloved brother. I also wanted to share my experience, I’ve had great luck with lowering the horrible symptoms of tapering and w/d by using Agmatine Sulfate, CBD, and kava kava. Especially the agmatine was beneficial for me as it lowers the excess glutamate which is what generally creates the anxiety

I don’t know what the laws are down under regarding cannabinoids but cbd is generally regarded as non-psychoactive & agmatine is a supplement!

 

Hope this can help your brother 🙏🏽

Wow!

 

That’s just fantastic news, Steve!

 

My hair is standing on end just hearing that things are beginning to come together… with a new GP associated with Reconnexion.

 

Awesome!

 

Winters Sun - You're a good man.  And very knowledgable.

 

BustedBrian404 - Good tips.  I will offer a caution to MattsBro though.  I tried CBD a couple weeks ago.  Maybe the THC wasn't fully extracted (but it was supposedly a reputable brand).  I had the WORST reaction to it.  Experienced akathisia, pacing around for a couple hours, and very high anxiety.  Everyone is different, but if Matt is in a precarious situation, maybe get stabilized before trying anything that could be paradoxical.  I'm a newbie though so no real experience other than personal. 

I am so sorry that your brother is in this situation.

 

I am sure CBD helps a lot of people but when I took it I also had a severe adverse reaction. An acute dystonic seizure-like issue that lasted for a couple of days. My muscles have not been the same since. They feel like wood now and have been very rigid since I took a CBD gummy. When I took liquid CBD I had worsening symptoms as well. I had to take Benadryl for the dystonic issue which made already existing symptoms worse. (Skin burning and tinnitus were almost gone then I took the Benadryl and boom here they were again.)

 

All this to say be cautious. The "natural stuff" also has side effects and you really don't know how it will interact with the pharmaceuticals. So, best to have fewer variables so you can try to pinpoint what is causing what. I tried Valerian tea and had a bad reaction. Come to find out it acts on the same receptors as benzos.

 

Thank goodness you are passing on the Olanzapine. Antipsychotics can worsen Akathisia. It is a common side effect of those medications. To be frank, the doctor who suggested this is a moron.

 

I am so sorry that your brother is in this situation.

 

I am sure CBD helps a lot of people but when I took it I also had a severe adverse reaction. An acute dystonic seizure-like issue that lasted for a couple of days. My muscles have not been the same since. They feel like wood now and have been very rigid since I took a CBD gummy. When I took liquid CBD I had worsening symptoms as well. I had to take Benadryl for the dystonic issue which made already existing symptoms worse. (Skin burning and tinnitus were almost gone then I took the Benadryl and boom here they were again.)

 

All this to say be cautious. The "natural stuff" also has side effects and you really don't know how it will interact with the pharmaceuticals. So, best to have fewer variables so you can try to pinpoint what is causing what. I tried Valerian tea and had a bad reaction. Come to find out it acts on the same receptors as benzos.

 

Thank goodness you are passing on the Olanzapine. Antipsychotics can worsen Akathisia. It is a common side effect of those medications. To be frank, the doctor who suggested this is a moron.

 

Sound advice. I hope you are feeling better today Rebecca. 

I tried to throw some other things at withdrawal that failed as well: NAC, a Chinese herb, and Vitamins. I finally gave up.

 

3mg of melatonin two hours before bed seems to help the Akathisia for some odd reason. So not everything has gone awry in the supplement department. But I have heard other people say melatonin makes them worse. I would prefer not to take anything and be back to my healthy sleepy self but.......not the reality for today, unfortunately.

 

Thanks for the well wishes. Right back at you.

I tried to throw some other things at withdrawal that failed as well: NAC, a Chinese herb, and Vitamins. I finally gave up.

 

3mg of melatonin two hours before bed seems to help the Akathisia for some odd reason. So not everything has gone awry in the supplement department. But I have heard other people say melatonin makes them worse. I would prefer not to take anything and be back to my healthy sleepy self but.......not the reality for today, unfortunately.

 

Thanks for the well wishes. Right back at you.

 

Thank you Rebecca.  Returning to the issue at hand.  It seems Winters Sun has some solid advice for MattsBro.  Matt must be so terrified to be that far from family and to lose his significant other in the middle of this fight for his life.  I hope the new doctors can prescribe him a stabilizing dose and MattsBro can help Matt implement Winters taper guidance.  Once he's stable he can join in here and get the direction first hand.  There is so much bad info out there. Especially among prescribers who can often be arrogant and unwilling to accept they are harming people.  This is the only place I have gained a sense of control.