ColdTurkeySoup: Anafranil/Clonazepam recovery

[ChessieCat]

4 hours ago, ColdTurkeySoup said:

Is there any way I can get a better idea of what the true cause of my symptoms are?

 

I suggest that you keep daily symptoms notes and post them here for assessment.  Post a full day (24 hour period) at a time so it makes it easier to compare each days notes.

 

To start with we need 3 consecutive days.  This post gives an example of what is required;

 

 

 

[ColdTurkeySoup]

Hello everyone, happy holidays! I hope everyone is doing well in these difficult times.

 

I've had a very unusual situation come up this past week -- I've been doing quite well overall, quit drinking entirely, trucking along with the same 18mg Anafranil dose that I've been taking for about 20 months now, feeling not perfect but decent enough...

 

But then earlier this week I started experiencing 2 unmistakable symptoms that I know very well, and that I always get when changing my dosage of Anafranil -- heart palpitations and spasms in my left leg (very specific, I know, but I've come to know these symptoms very well after many dosage changes in the past 16 years). But I didn't change my dose!!! They are very clearly caused by the drug, as not only are they specific recognizable symptoms that I've had before, but they kick in about half an hour after my dose and gradually fade over the next 12 hours. 

 

I can think of 2 possibilities:

 

1) Since my dosage is getting compounded, perhaps the pharmacy screwed up and did not issue the proper 18mg dosage.

 

2) After so much taxing change to my nervous system over the past 16 years, my body is just hyper sensitive and no longer reacting well to the drug itself. 

 

I don't know what to do or how to determine which one of these possibilities is correct. I'm honestly just so tired and frustrated with these constant issues, it seems like this is a never ending ride of struggling and suffering. Any help would be greatly appreciated. 

[ChessieCat]

Before assuming that it's the capsules it's a good idea to look at what other possible outside issues might have happened.  Things to consider:

 

Was there anything else that was different, eg stress, sickness? 

Did you happen to eat a larger meal or different food or drink to your usual? 

Drink more water that particular day? 

Did you have any bad nights of sleep? 

Did you miss a dose? 

Take your dose at a different time? 

Did you have diarrhea, vomiting? 

Take a supplement or other prescription drug which you don't normally take?  Especially an antacid tablet or liquid.  This should be taken 2 hours apart from any other drugs.

 

How old are your capsules? 

Did this happen just after getting a new batch? 

Do you store them in a cool place?

 

If you can't think of anything else then there is a possibility that there was an issue with your dose.

 

Another member recently asked about the method that her compounder was using and I asked the other mods about it and this was BrassMonkey's comment:

 

Quote

 

 

You are never going to get the exact same dose from capsule to capsule using any method. Even the Big Pharma manufacturers can't do it. Using the method listed above is about as good as you're going to get. There are mixing standards that have been developed and tested over the centuries to get as close to a homogeneous mixture as possible, and they are very accurate.

 

The only place I see an error sneaking in is during the capsule filling process. It is, however, the industry standard  and will yield capsules that are with in a few milligrams pill weight of each other. When you extrapolate this to the milligrams active ingredient in the capsule the difference in actual dose strength is minimal. Well within the international standard of 3%. Yes, that means that you could, in theory, get a 6% variation from day to day, but the likely hood of that more than once is very small.

 

A minute daily variation in dose strength should make no difference in a taper. You have to take into account half lives, blood serum concentrations, daily metabolism, bio availability, in addition to dose variation. So even if the capsules were exactly the same you would still be getting a different dose every day. All we can hope to do is to keep the daily doses as consistent as possible and cope with it as best as we can. The system isn't perfect, but it is pretty darn close, and it is all we have to work with anyway.

 

 

 

 

Considering the above comment, there is a possibility that you just happened to take a lower dose capsule over a period of a few days when it would probably be more usual for the dose to be a variety of doses.  A bit like rolling 3 x 1's in a row on a dice when usually you might roll a 6, a 1 and say a 3 or 4 so it averages out.

 

You can find videos on Youtube.  Search for making compound capsules.

 

Generally the process used to create compounded capsules is fairly accurate.  However, because the process involves manual work and calculations done by fallible humans then there is always a possibility that some of the capsules may contain an inaccurate dose.  Does the compounder use a bulk powder or prescription tablets to create the capsules?  There is a possibility that the wrong quantity of powder or the wrong tablet dose was used or that some was spilled or remained in the container.  Or it could be that a different person made the capsules and their process was a bit different to the regular person.

 

If you don't feel confident that the capsules are accurate the best thing to do would be get a new batch made and dispose of the current batch.  If you use the same compounder and have a good relationship with them then you could speak to them about what has happened.

 

One option is to have a liquid made up if that can be done with the drug you are using.

 

We have had another member who was using compounded capsules and had some tested for accuracy and there was quite a large variance in the doses.

[ColdTurkeySoup]

Thank you so much for the lengthy reply ChessieCat! I really appreciate it. 

 

Was there anything else that was different, eg stress, sickness?  - YES, extra stress!

Did you happen to eat a larger meal or different food or drink to your usual?  NO

Drink more water that particular day? NO

Did you have any bad nights of sleep? NO

Did you miss a dose? NO

Take your dose at a different time? NO

Did you have diarrhea, vomiting? NO

Take a supplement or other prescription drug which you don't normally take?  Especially an antacid tablet or liquid.  This should be taken 2 hours apart from any other drugs. NO

 

I've definitely had some extra stress these past few wees, but I'm hesitant to blame that because I've had lots of stressful situations over the past couple of years without these strange side effects that I always get from a dosage reduction. 

 

The symptoms lasted about 4 nights, and they always started right after taking my meds in the evening and then would gradually fade over the next 12 hours. Last night, I took my medication without any of these specific side effects, so hoefully they have passed!

 

How old are your capsules? About 2 months

Did this happen just after getting a new batch? 2 months ago

Do you store them in a cool place? regular room temperatature -- about 23C

 

It makes sense that compounding is always going to lead to minor inaccuracies and variances, but like you said, even if it were possible to take an exact dosage, the amount that's getting used by your body can fluctuate based on certain factors, and so I suppose all we can do is try to make the dosage as consistent as possible! I trust my pharmacist, and he tells me that he has taken great care to ensure the accuracy and consistency of my dosage, as he knows that my system is extremely sensitive. 

 

I'm going to see how my body reacts for the next few nights, but as of now my plan is to finish my current prescription and then contemplate a slight reduction (perhaps 16mg) in the new year. I'm so sick and tired of having to constantly wonder whether inaccuracies in my compounding are causing me problems, and like Alto suggested a while back, it's still a possibility that the drug itself is causing my ongoing symptoms (not the side effects that I've experienced the past few days, but the ongoing withdrawal-like symptoms I've been experiencing for years)...so the bottom line, I want to gradually reduce to 10mgs over time, that way I'm at a standard pill rather than getting my dosage compounded, I'm reducing the drug burden on my body, and I'll also be able to tell if the drug itself has been contributing to my ongoing symptoms, as they should improve over time with this reduction plan if the Anafranil has in fact been contributing to my symptoms. 

 

Let me know what you think! As always, grateful for your support. 

[ChessieCat]

We do the best we can with regards to tapering.  And even if there is a bit of inaccuracy in our doses it's better than getting off the drug too quickly.

 

The added stress might chance how fast your metabolism works.  This is just a thought.  I don't have anything to back it up.

 

Just remember that just because something happened a certain way before doesn't mean that it's going to happen the same way this time.

 

It might be that you have reached a dose that is a bit more difficult to get past than other doses.  Have you seen the dose occupancy topic?  There do seem to be certain doses which members might have more of an issue with.  There is no rule to which dose that is, it seems to be different for different people and different drugs.

 

Why taper paper: dose-occupancy curves

 

The good thing is that it is easing now.  You might find that you have the same thing happen next reduction (or another reduction down the track) but it might not be as bad or for as long.  However if it happens again and is as bad or worse and/or lasts longer you might consider making smaller reductions.  Many members find that as their dose gets lower they need to slow down, reducing less and/or holding for longer.  The aim is to get off the drug with as little discomfort and disruption to our lives as possible.  Even if we have to reduce by tiny amounts it is still heading in the right direction and we will get off eventually.

 

I've just had another thought regarding it being a side effect of the drug.  It could be that the side effects reduced after going to 18mg but now that your brain is completely settled on the 18mg the side effects are resurfacing.  As I said, just a thought.

 

It's a nuisance that there is no tests that can be done.

[ColdTurkeySoup]

Thanks for the detailed reply ChessieCat, and I apologize for not responding sooner. 

 

"It might be that you have reached a dose that is a bit more difficult to get past than other doses.  Have you seen the dose occupancy topic?"

 

It's possible, but I don't expect this has anything to do with my last intentional reduction. My last reduction was April 2019, down to 18mgs. That's over 1.5 years ago.

 

"I've just had another thought regarding it being a side effect of the drug.  It could be that the side effects reduced after going to 18mg but now that your brain is completely settled on the 18mg the side effects are resurfacing.  As I said, just a thought."

 

This is not something I had considered! It's possible, but again it feels like I'm way too far out from my last reduction for it to be a contributing factor.

 

I've been giving this a lot of thought recently, and I think it will be helpful to write it all down and clear my head. I want to discuss 2 general topics: My ongoing protracted withdrawal symptoms, and the recent appearance of what I typically get as direct withdrawals symptoms soon after changing my dosage. 

 

Starting with my general situation, I've had symptoms for over 4 years now! The symptoms have varied in intensity, and they're much better now than they were at their worst, but that's a long time to be suffering. I CT'd my benzos in fall 2016, and then made a large cut to my Anafranil dosage in spring 2019. I guess the reason I want to bring this up is to make sure there's nothing I'm missing, and to give myself the best possible path to healing going forward. 

 

I must confess that I have been a heavy drinker in the past, and my withdrawl/recovery has been littered with slips where my will has faltered and I've gone on a drinking binge. I fully expect that this has slowed my healing, and I accept full responsibility for my mistakes. I'm ashamed to say that I did slip up on September 13 2020 with a night of drinking, which was about 6 months after I made a commitment here to stay off the alcohol for the foreseeable future. I'm ashamed of this, and that's likely why I didn't come here to post earlier. I've had a somewhat rocky fall, and I wouldn't be surprised if that was mostly due to the drinking. I understand that it must be frustating for you to try to help people who keep shooting their progress in the foot. Going forward, I am completely rresolved and commited to staying away from alcohol. I'm done playing games -- this is my life on the line here, and I need to do everything I can to get my life back on track. 

 

So, here is what I'm currently working with in terms of factors that could affect withdrawal:

 

- No benzos since september 2016, and never again

- No alcohol whatsoever, last dose was September 2020

- Steady 18mgs of Anafranil per day

- I drink 2 cups of coffee per day. Is this soemthing I should look to cut out?

- 4,000 IU vitamin D/day

- Trying to minimize stress

- Eating healthy with limited processed sugar

- Sleeping well

 

Is there anything else I should be doing? I just want to make sure that I'm not missing anything, and that I'm giving myself the best chance at a full recovery going forward. 

 

I'm hoping to reduce my dosage of Anafranil to 16mgs/day in March 2021.

 

In terms of the recent onset of the symptoms I typically experience when I change my dosage, I can see 4 possibilities:

 

1) The compounded dose itself was inconsistent... error/ quality control issue. 

2) My body has become more/less sensitive to the drug for whatever reason.

3) General life factors have caused the symptoms (stress, rich foods over the holidays, alcohol that I had in September, etc)

4) Something else that I haven't identified. 

 

I'm picking up a new batch today, so hopefully that will resolve the situation if (1) is the culprit. If (2) or (3) are the culprit, I believe consistency and a healthy life style will resolve the issue over time. Any other feedback would be super helpful.

 

Please understand that these symptoms are very different than the general protracted symptoms that I deal with. Ironically, these "acute" symptoms are far less severe and distressing than the protracted withdrawal symptoms. 

 

Acute symptoms: Spasms in calf muscles, heart palpitations

 

Protracted symptoms: Mental fog, pressure in temples, chronic fatigue/exhaustion, feeling disconnected and anesthetized, memory problems, lack of concentration/motivation, lack of emotions 

 

I know this is a complex and convoluted post, and I thank anyone who takes the time to read it. Overall life isn't too bad right now, I feel like I'm moving in the right direction. However, things are far from perfect and I so, so badly want to get back to a place in my life where I feel alert, focused, alive, and content. 

 

 

 

 

[bijay]

@ColdTurkeySoup  Hello, just wanted to say that you really seemed to have nailed down a good plan going forward.  So glad you are in a place right now where you have the clarity and motivation to put all this into words.  I often get despondent about things and am glad to see others like you bravely moving ahead despite similar obstacles.  

 

Just a suggestion about the alcohol - it may be worthwhile to have a gameplan in place for when you do feel tempted.  Call someone who knows your situation, or even just write down your reasons for not drinking and put it in your wallet, so you can pull it out at any time.  Identify what triggered the last binge, and avoid those triggers (if possible) or distract yourself from them.  If you have a process you can rely on beforehand it can really help you control the situation.

 

Hugs and best wishes!