Tapering off Diazepam - never had stable dosage

[[Ni...]]

SHORT VERSION

Been taking a 2mg tablet "when required" August 2016.

Started taking nearly everyday end of April this year 2023.

Started coming off to much, too quick around 12 August.

 

Developed inability to stay upright without almost passing out on 31 August.

 

Been taking 1mg a day everyday since 6 September.

 

 

LONG VERSION 

First prescribed Diazepam August 2016 for anxiety - 2mg take as needed.

 

I began taking it more often in 2020.

My prescriptions went from once a year in 2016-2019 to 3 times in a year in 2020 and 4 times a year 2021 and 2022. Still 2mg tablets.

 

 

I began going only a week or two not taking any, then take one.

Or spend a week or two taking one every two days, sometimes even a double dose.

 

 

21 April 2021 bad laryngeal spasm - started taking once or twice practically everyday. Which carried on after developing bad constant vertigo 29 April. Calendar below.

Barely ate or drank anything for first month or so.

 

 

 

In August I wanted to go down and come off, asked GP, they wouldn't reply. 

Gave up and thought I would do it myself.

 

Started reducing around 12 August, then went back to everyday for 4 days, then back to gaps.

I know now this was wrong.

 

I developed inability to stay upright 31 August without passing out, head pressure, worse vertigo and dizziness.

 

 

I started to take 1mg a day everyday Wednesday 6 September. To try and create a baseline to come down from.

 

Is this the right this to do?

How long do I stay on this to create a baseline?

Where do I go from there?

0.5mg a day, everyday? 

1mg every other day?

And where from after that.

 

Ive managed to get hold of 2 GPs, both gave me very different answers. And the pharmacist just said to go slow but with no details.

 

I hope someone here can offer some insight, point me somewhere.

 

Thank you.

 

Calendar

yellow - 1 x 2mg tablet

green - 2 x 2mg tablets

purple - 3 x 2mg tablets

blue - 1 x 1mg (2mg tablet cut in half)

Edited September 18, 2023 by [Ni...]
added short version and calendar

[[Pa...]]

Hello @[Ni...], welcome to BenzoBuddies,

You’re doing the right thing by establishing a baseline, but before we get into tapering off, how are you feeling?  We suggest making decisions on when to reduce and by how much based on our symptoms, they’re the best guide we have to stay functional.

We suggest reducing by about 5-10% every couple of weeks or according to symptoms, a slow steady decline in blood serum concentration is advised, skipping days is not. 

Vertigo is a common complaint from members, it can crop up while we’re still on the drug as our dependence grows and also as we’re tapering from it and sometimes awhile into recovery.

 

[[Ni...]]

Thank you for your reply.

 

I developed constant vertigo 29 April, made worse from movement, fluctuates in severity but has been disabling the whole time.

 

By mid June watching TV and scrolling on phone began to make the vertigo worse.

Had to stop wearing my glasses in July.

 

My tinnitus started to get bad in May and became terrible around 20 June.

Started to think I was hearing the phone ring, phone or echo alarms go off or doorbell ring as well.

In July my hearing started fluctuating.

 

The whole time Ive been suffering with head pressure, sometimes so bad it feels like my head will explode or implode.

 

In August I developed new tinnitus noises, severe sensitive hearing.

 

The last few weeks of August the vertigo seemed to be milder at times where I could get away with certain movements.

But then 31 August its back worse than ever.

 

The whole time my mental health has been bad, suicidal ideation and attempts, irritability, anger, feel emotionally discombobulated.

 

Its been over 4 months of hell and I dont know its the Diazepam or something inner ear or brain related or all of the above.

I never considered the Diazepam as a possibility until the last week of August.

[[Ni...]]

Here is a calendar of my dosages to show how all over the place Ive been these last 4 months.

Yellow 1x 2mg tablet

Green 2x 2mg tablet

Purple 3x 2mg tablet 

Blue 1x 1mg (a 2mg tablet cut in half)

 

Edited September 12, 2023 by [Ni...]
changed calendar picture

[[Pa...]]

You’ve done an excellent job of keeping records, this will be important for your taper.  We suggest keeping track of your symptoms and their severity to aid in making reductions decisions. 

I believe you’ve correctly deduced the cause of your symptoms, quite often its the member who has to connect the dots and they lead to benzodiazepine dependence and tolerance.

What is your current daily dose and how do you feel?

[[Ni...]]

My current daily dose is 1mg a day, everyday. Ive been doing this since Wednesday 6 September.

 

 

My symptoms have increased in severity since 29 April and Ive developed new ones.

 

Then in the last 2-3 weeks of August, the vertigo started to be less severe every now and then. Everything else remained as bad.

 

Then 31 August the vertigo became much worse and so did my ability to be upright, as soon as I'm upright the head pressure starts, lightheaded, worse vertigo, confusion etc.

So I have to stay laying down even more than what I was having to do pre 31 August.

 

I got a few hours of less severe symptoms on Saturday 9 September. Though still more severe than pre 31 August.

 

 

 

Ive been keeping a journal since 1 May but really didn't get into writing much about symptoms until June.

 

I have severe M.E. and I am very sensitive to chemicals and had bad reactions to medication in the past.

 

For the last few years Ive been suffering attack versions of my current chronic symptoms.

Its only now that I see the connection with the worsening of the attacks over the years with my increased consumption of Diazepam.

 

I think Diazepam being in my system is causing these symptoms, but also, not being in my system may also be doing it.

 

Im getting hit by both sides.

[[Pa...]]

It appears from your records you reduced the diazepam by 50% preceded by some erratic dosing, I fear you’re going to start suffering extreme symptoms as the drug exits your system.  It can take sometimes up to 3 weeks for this to happen.  Do you feel increasing your dose back to 2 mg and holding there for awhile would be helpful?  Then we could talk about how to slowly taper off that by either pill cutting or using titration.  https://benzobuddies.org/benzodiazepine-withdrawal-methods/titration/

[[Ni...]]

Is that a possibility?

I thought because I had already been taking it so further apart in the last 3 weeks of August, that taking 2mg everyday would be an increase.

 

Although the dosages were all over the place, if you add up what was taken in a week, each week varied between 6-8mg.

 

So I thought taking 1mg a day everyday would add up to the same weekly dosage, just evenly spread out.

 

Edited September 11, 2023 by [Ni...]
added calendar

[[Ni...]]

Im really scared now, what do I do?

[[Pa...]]

Thanks for enlarging your calendar and explaining your thoughts, I’m sorry I made you more apprehensive.  For the most of August and September, you’ve been on a fairly steady dose.

I believe Professor Ashton tapered her patients off at 1 mg, but many of our members will taper lower.  You mentioned you’re sensitive to medications and have other health issues, are you thinking about using titration to taper lower?

 

[[Ni...]]

Oh phew, you scared me, Ive been freaking out.

 

Yes I want to taper lower than 1mg just to be sure.

 

Im not sure how long I should stay on the 1mg Im currently on.

If 2 weeks will be long enough for my body to settle or if it will need longer.

 

But once that's sorted I would like to move to half a mg everyday.

 

I get 2mg tablets and have been using a pill cutter to get the 1mg.

I think I might be able to cut it into 4 to get the half a mg. That or look into liquids.

[[Pa...]]

Again, I’m sorry I upset you, I may have interpreted your legend of colors and doses incorrectly at first glance as well. 

Two weeks ought to be long enough but I like the idea of cutting your pill into quarters for your next reduction.  Even though the tablets are most likely scored and you can’t be guaranteed equal amount of the active ingredient if cutting it smaller, most members have been successful with this method. 

Diazepam comes in liquid form from the manufacturer but looking into putting your tablet in liquid is also a possibility for a smooth ending to your taper.

 Once you’re off the drug there is recovery which can feel pretty much like tapering so try to be patient. 

[[Ni...]]

Im sorry, the calendar was made more for myself, I can see how it can be confusing for someone else.

Yellow - one 2mg tablet (2mg total)

Green - two 2mg tablets (4mg total)

Purple - three 2mg tablets (6mg total)

Blue - one 1mg (1mg total)

 

So taking the 1mg a day everyday for 2 weeks should be long enough to create a baseline, thats good. 

I was wondering if maybe it should be 3 or 4 weeks to make sure my body was fully used to a regular dose everyday.

 

Do you have any info on how I would go about adding a pill to liquid to get smaller doses?

I will contact my pharmacy to ask them what they can get liquid wise as well.

[[Pa...]]

I think giving your body even more time to acclimate to a steady 1 mg dose is a good idea.  

Your doctor will need to prescribe the liquid diazepam from the manufacturer if you’re interested in that route, compounding pharmacies can also create liquid but it may be more expensive. There are many YouTube video’s on how to create your own home brew but I can ask another member to drop by who has more knowledge than I do about titration.  

 

 

[[Ni...]]

I cant watch videos because of the vertigo.

Its difficult enough using my phone for text.

I was getting better with using my phone, videos etc, but not since the 31 August.

 

I will contact the pharmacy about what they can get, whats available and then ask the GP for prescription. And look at prices too.

If you can forward someone here who knows more about titration that would be great, thank you.

[[...]]

If you cannot watch the video due to vertigo (I totally understand).

Can you try this?  Lay on your bed with your eyes closed and just listen to the audio?

But even if that doesn't work, I can help you.  Here, I will explain what you need to do.

First, get stable.  Stable means your symptoms are tolerable enough to continue your taper.  You will still have symptoms, but they are tolerable.  If you want to try something off-the-shelf, buy some 5-HTP.  DO NOT TAKE VERY MUCH.  YOU ONLY WANT TO TAKE 10 to 20mg.  This product 5-HTP comes in capsules of 50, 100,  or 200 mg.  That is crazy.  Just open the capsule and using your eyes, estimate about 10 to 20 mg of the powder.  For example, if you have 100 mg capsules, only eat about 1/10 of them.  Try this in the morning or evening.  Everyone is different.  After a couple of days, let me know if you notice anything.  It should help you get stable if you are taking the same about of benzo each day.

Ok, once you are stable enough for the water taper, do this:

(1) Put your benzo into a jar.

(2) Add a few drops of vodka to the benzo to help it break down (this step is optional.  If you skip it, just stir harder in step 3)

(3) Add 180 mL of water and stir to dissolve your benzo.  Do not worry if you see little chunks floating in the water, those are fillers.

(4) Now, each day for 180 days, remove one extra mL of the mixture and drink the rest.  For example:

Day 1, remove 1mL and drink 179 mL

Day 2, remove 2mL and drink 178 mL

and so on

[[Ni...]]

Thank you for your information.

However due to how bad the vertigo is I am unable to do any of that.

I have contacted my local pharmacy and asked them to put me in contact with a compounding pharmacy. I think that's my only option.

[[Ni...]]

If I can get help from a compounding pharmacy I will need to work out how much to go down each time and when to go down.

[[...]]

[[Ni...]]

I would totally try the 5-HTP but I cant pull the capsules apart.

As well as the vertigo, I have severe M.E. and dont have the strength or dexterity in my hands to do that.

Edited September 12, 2023 by [Ni...]
spelling

[[Pa...]]

37 minutes ago, [[N...] said:

If I can get help from a compounding pharmacy I will need to work out how much to go down each time and when to go down.

Hopefully your doctor will provide adequate instructions to the pharmacist. The only problem I can see is if both your doctor and pharmacist think your dose is already low enough to stop taking it completely. 

[[Ni...]]

I have no idea what the GP or pharmacy are gonna say.

But the GP has no idea about coming off diazepam, so they won't be any good on that.

[[Fa...]]

Hi, @[Ni...],

Are you in the US?  If so, you may consider asking your GP (and/or your pharmacist) about the 5mg/5mL (1mg/1mL) oral solution of diazepam that is available via prescription (see link below to the official FDA Drug Label from one of the manufacturers).  An advantage of using the prescription liquid is that it has been proven to be a homogeneous solution; each and every milliliter of the liquid contains exactly the same amount of the Active Pharmaceutical Ingredient (i.e., diazepam).

If not in the US, the other methods discussed with @[Pa...] and @[...] will be more than fine as well.  I just wanted to stop by, and hopefully assist, in helping you discover the easiest method for you personally to successfully discontinue diazepam.  

An example schedule would be to reduce by .01mg/ml per day for 10 days and hold for 4 days (e.g., .1mg/ml reductions every 2 weeks).  Listening to your body and letting your symptoms guide you is the key.  You are so close to the finish line; you've got this!

DailyMed - DIAZEPAM solution
https://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?setid=9e85abed-1a8b-4762-a31f-f2c7f196b8af

[[Ni...]]

Any help is greatly appreciated.

I live in the UK.

Im going to ask my GP and Pharmacy tomorrow about compounding pharmacies to get me lower doses.

Im really bad at maths so all the talk on here of fractions, reductions etc is very confusing for me.

[[Fa...]]

Sounds good, @[Ni...].  I am optimistic your GP and pharmacist will work with you.  Please do keep us posted and/or let us know if you need any help with math, how to proceed etc…