Hi. I wanted to update my status.
In April, I looked into a headache center near me. I had an evaluation and they agreed to take me inpatient to help me get off of fioricet. I had to wait until June. I got up to 8 tablets a day by the time I was admitted.
Because it was not a drug rehab, but a hospital, they did not rip me off any of my other medications, including benzos. They switched me over to the equivalent dose in phenobarbital. I took that in a split dose for 2 days, then they reduced it by 30% each day. It was excruciating. They did provide extra comfort meds like Ativan and seroquel. I was discharged on day 6 with five tablets of 32.4mg phenobarbital to take PRN and taper further.
I remember taking a tablet the day I was discharged. Then I waited about 3 days to take another tablet. A week later, I took a half. I spaced four halves (16.2mg) about a week apart each. Then I split the final tablet into quarters.
It was a rapid taper, yes. I was and still am worried about seizures. They reassured me that the risk is minimal, but you never know. I still have tinnitus and feel I need loads of sleep. Overall, I feel much better. I don’t have the horrible highs and lows. I can actually sleep without waking in a panic. I do have issues with memory recall and word retrieval, but it’s slowly getting better. I play memory games and puzzles on my phone to hopefully expedite healing.
Unfortunately, I had to increase my benzo dose to compensate because benzos and barbs are synergistic. I will taper benzo eventually, but I do not think my neurons are ready for that yet.
I am so incredibly blessed to have had the headache center in a hospital just a few miles from my home and that they had experience with patients like me. Drug rehab isn’t the way to get off of barbiturates or benzos. They just yank you off of everything and you can be left suffering protracted withdrawals or PAWS (which I suppose I have to some degree).
I knew I was not going to be able to taper on my own. It was too difficult with a family to take care of. It was either the crossover to phenobarbital in a medical setting (I was connected to a Holter monitor the entire time) or die. If anyone is desperate and can’t do it on their own, I urge you to look for a program like this.
Update: I am taking 5 tabs per day and doing terribly. Anxiety out of control. Feelings of internal restlessness. Today will only be day 3 of the dose drop. If it doesn’t let up, I don’t know what I’m going to do.
I did increase my Zoloft dose recently, so I’m hoping that will take effect sooner rather than later.
I went up to my full dose of benzo and that is not even very helpful.
I'm glad you've not taken more than that! If you read back several years, there were a few of us around here that really struggled with the drug and it's just a runaway train - I (and a lot of people) could simply not stop taking more and more.
I've also heard Buspar is ineffective. All I know is that I *think* it had just enough of an effect for me to make me more stable. At the very least, it's done no harm and was much easier to add than switching meds. The only basis for me thinking it works is that I have far fewer dips and when I do have them, they aren't quite as severe and don't last as long. It kept me from having to increase my Zoloft, which was good because when I increase it, I go through manic phases, though I don't have bipolar, so it's a totally med-related mania. I'm just very sensitive to SSRIs.
Anyway, I'll keep checking in here to see how you're doing. Just know you're not alone and we've had lots of people come through here, wrestle with this drug, then feel so much better once the storm has passed! Keep that in mind as you go through this - you're not alone, and there is definitely hope! :)
I have to wonder if maybe it's less about inter-dose withdrawal and more that the med just is no longer covering up an underlying 'something'. Are you on anything else for anxiety, like an SSRI or something? My experience as I withdrew from butalbital is that yes, I'd have a spike of anxiety and feeling weird for a day or two with each very conservative drop, then it would resolve until I went to the next drop. However, I'll add that I was/am on an SSRI and Buspirone for anxiety, OCD, depression, etc., too. I was put on an SSRI about 10 years ago for an EXTREME anxiety breakdown that lasted several months. During that time, I found butalbital to be helping more with anxiety than the Xanax my doctor also prescribed, so I used them together to keep those symptoms under control. However, given my loooong history with butalbital, as I reflect on that experience, I know it wasn't inter-dose withdrawal, but instead an underlying thing that had amplified to the point where neither the butalbital nor the Xanax could really get it under control for much more than an hour or so each. I just had to wait until I found the right dose of the SSRI for that to finally get itself under control.
So, fast forward to my most recent withdrawal from butalbital, yes... I had those days of anxiety and irritability that you would expect with lowering a dose, but it would resolve in a couple days usually. I would do things that did help, like visit friends as often as a I could (though I had to push myself because it was far easier to lay on the couch and wallow in the misery... and I'm not being condescending here. It really WAS much easier!), and I would also go on regular walks. I didn't do anything that would be too strenuous because I was concerned about my body during withdrawal, so I just took things slow and tried to get out as much as I could, and also to be as social as I possibly could. However, my final day of going to zero... I just did absolutely nothing for a couple days. That first week at zero was a good week to have not done much of anything. A 30-minute walk can do wonders, especially if weather is kind to you. During those walks, I'd try as best I could to redirect my thoughts rather than ruminate, which is often difficult for me and I wasn't always successful.
If you can carve out a 30-minute slice of time each day for a walk, be it alone or with someone, I'd say go for it. If you're not making big dose drops, then I'd say the flood of 'feel good' stuff that comes from a walk of that length can only do more good than harm. :)
For me, I know that butalbital ultimately cultivated an extreme amount of emotional dysregulation, which is different than just anxiety. It was really bad. So, I would not be surprised if the anxiety you're experiencing is indeed inter-dose withdrawal! However, I'd expect that more from one of the shorter-acting barbs than this one, unless you'd been on a much higher dose than 6/day and have dropped down to that relatively recently. If you've been on 6/day regularly without big spikes in use above that, I just have to wonder of the 'protective factor' of the drug knocking out the anxiety has simply diminished and the underlying anxiety/depression already there is simply not seeing symptom relief anymore. For that, walks do wonders. SSRI/SNRI adjustment can help, as I'm sure you know. But, so can hugging trees. Legit...I find a good tree to hug and I can feel my heartbeat slow! For me, anxiety and depression make me want to avoid doing things, which is the exact thing that makes both worse! So, while it can be hard, getting a scheduled walk and some more regular socializing on a planner and sticking to it can really help. I also spend time playing the piano too. Music is very therapeutic for me!
You will likely know more about some of this than me, but you're right insomuch as theoretically things sound great. For example, it's great that phenobarb used to be the 'go to' for getting off barbiturates. I honestly don't know how many treatment centers are equipped to actually deal with transitioning from butalbital to phenobarbital, especially since phenobarb used to be the 'go to' for barbiturates with a shorter half-life (seconal, pentobarbital, etc.), and one would transition over and then taper. Butalbital has a relatively long half-life, so there's almost no point in a transition to phenobarb and then taper, in my humble opinion. I don't have any idea of how many treatment facilities are prepared to do such a thing since barbiturate is far less common than alcohol and opiate addiction. My online searches have suggested few are really prepared for that type of treatment, but I could be operating under the wrong impression!
I also did not have the goal of tapering from my benzo because it actually helps me and does not do what the barbiturate does, meaning I do have much more control over how I take it than I did with the fioricet. I think at this point, I personally feel really confident that your honesty with your physician and your own knowledge/experience mean that you'll find a pathway that's very safe. Where I feel more comfortable commenting at this juncture is just in what it feels like, and providing a reassurance that the unbearable anxiety and other types of strange feelings that pop up are normal. One that really threw me for a loop was feeling like I was coming out of a dream. I also was continually confronted with things I simply didn't remember. That was disorienting, and it kind of felt like coming out of a womb might feel - uncomfortable, scary, and a totally different environment. That eventually passed after a few weeks.
I'll also note that I was taking less of my benzo than prescribed when I began the Fioricet taper. When I got to the 'zero hour' mark, I did increase my benzo use some to try to make that more comfortable. It helped, but I also had the room to do that. I suspect working so closely with your prescribed means there might be a willingness to do that for you when it gets down to the jumping off point. To be honest, even though I'd gotten down to half a tab for several days, it didn't change the fact that going to zero was still very hard to do. It felt unpleasant and the anxiety really did go up. The benzo helped me get through that, but I imagine it would have been even more uncomfortable without one, even though it would have still been safe.
My advice from experiencing the taper is that what one can do SAFELY is not necessarily the same thing as what one can do sustainably. By this, I mean that for me, each dose drop was uncomfortable even though it was only dropping by half a tab every 7-14 days. I likely could have safely done the taper faster, but I think that the experience of a faster taper would not have been sustainable given the anxiety and other wonky feelings that would've likely come with it. So, I suppose my real advice since you seem to have a great knowledge of the drug itself and prescriber support is simply to see it as a marathon and not a sprint. I truly think that makes it way more doable if you've got the ability to navigate the taper with a prescriber and aren't binging in ways that sabotage the taper plan.
Again, I'm no doctor, but I definitely support not even worrying about the benzo unless you started seriously overcompensating with it as your dosage of butalbital drops. I think on paper, doctors often see benzo and barb addiction as the same thing, but at least for me, I've never experienced benzos and barbs in the same way. I can take benzos the way they are prescribed and I don't feel euphoric or anything else with them. That's simply not true with the barb for me.
If you have been taking 6/day, yes! I'd tell your doc that. I personally would aim for 5.5/day...then 5...then 4.5. I actually did it even slower by going 6/day, then alternate 5.5/6 per day for a week, then 5.5 x 7, then alternate 5.5/5 x 7, and so on. That's a very long taper but was so comfortable. Much different than trying to run a sprint!
Please feel free to keep me in the loop. At this point, I'll be cheering you on! It sounds like you've got a great start with your doctor and your own set of knowledge. :)
I hear your anxiety and understand it. I have struggled with Fioricet/Fiorinal addiction my entire life (literally since around 8 or 9 years old). I've had periods of sobriety, periods of moderate daily use, and periods of being completely out of control. Last year around this time, I was completely out of control with my Fioricet use, along with a benzo and alcohol to augment the effects.
You seem to grasp the importance of a taper. To answer your question about the anxiety piece, YES! That definitely was an issue for me. However, what helped quite a bit with my comfort was to split Fioricet tabs. So, my morning dose went from 3 in the morning to 2.5, then to 2, then to 1.5. Same thing with any other dosing I was doing throughout the day. It was a gradual decrease, which is important both for comfort and for avoiding negative side effects. You see, the risk is not just a seizure risk, but also of cardiovascular system collapse, which is more a risk if you go from daily dosing to nothing or to very low dosing.
My understanding is that you'll be moving from 6/day to 4/day, which might not be fun, but if you're getting tabs and you can already foresee the reduction, I wonder if you're able to split tabs and make the drop softer by figuring out how many days you've got to drop to get there and how to make it as easy as possible. For example, if I knew I was going from 6/day to 4/day in 7 days, then this gives me 7 days to soften that drop rather than just do it all on that 7th day.
Gabapentin is actually probably helpful, as is the benzo, because both have anti-seizure properties, though all of them carry the same risks if you were to abruptly stop them (abruptly stopping all of them would be VERY concerning, in my view). Barbiturate tapers really can only be directed by a doctor. However, the most frustrating think when dealing with addiction to this med is that even doctors don't know what the heck to do anymore since barbiturates are so infrequently prescribed (Fioricet is really the last vestigial drug from this class of medication), and also treatment centers simply don't treat this addiction anymore.
I can tell you what made my process successful. I had a plan and someone else to handle my pills and give me my doses. The plan was loooong. The longer the better, so long as the trajectory is downward and you know you will have access to them for a nice long taper. If that's not the case, it's probably a good idea to have a frank conversation with the prescriber about it (and, in fact, I will do the obligatory encouragement to have the conversation regardless!). For me, I simply could not decrease my own dose. Not only could I not decrease them if I had them, but I couldn't keep myself from binging on them, which then would land me in a frightening position of potentially running out.
You can get off this med! I promise! It may require a team of people to help. It may bring anxiety and discomfort, even done according to the safest protocols. However, I'm 230 days free, and I can say unequivocally that Fioricet was actually creating more mental instability than it was resolving. I recommend talking with your provider, if possible. I also recommend that, if it's possible, you might have someone help you with the taper so you can stick to a schedule without binging. This was really hard for me to do alone, but maybe isn't so hard for others. If you can split tabs, it's much easier to do a half tab reduction than a whole one, in my opinion.
I believe with the right planning, you can safely be free of this drug, just like many others who have come through this forum having found themselves addicted to it. There's hope! That's the key - remember there's hope! :)
All the best,