Reclaiming my brain

[[Ma...]]

Well, here goes....

 

I've been having numbness and pins and needles in the left side of my face, my left arm and torso, and occasionally my left leg when I take my Klonopin dose late for about six or eight months now. It took a long time for me to figure out that it was the Klonopin causing it. Once I was fairly certain I told my doctor who immediately apologized for not catching it herself. I don't blame her though. I think we finally settled on that and the decision to taper off in November 2019. She wanted to wait until after the holidays to start my taper.

Today is February 12th, 2020 and I've been at the first level of my taper for 11 days now. The first week really wasn't too bad, just the usual bad headache and nausea that I've come to expect when taking my meds a little late. But then day eight hit with a vengeance. By evening I was vomiting everything that I tried to keep down. The room was spinning nothing would stay still. My head felt like it was going to explode. All I could do was lay down and not move. That was four days ago. Thankfully the worst of the vomiting and headache subsided about 23 hours after it started. I haven't had a migraine in probably 15 years but if I had to call this something that would be it. I've called in sick to work for 2 days because of severe headache, light and sound sensitivities, and vertigo. Since im autistic I already have pretty severe light and sound sensitivity but this was over the top even for me. There was no way I could entertain the thought of being around anyone else. Having my TV on a volume level of 2 was too loud. Watching the screen was too bright. I ended up putting my phone in black and white mode and turning the screen very dim in order to be able to do anything on it. For 2 days I just slept, read a bit and tried to stay hydrated. About noon yesterday I finally started feeling human again. I've was living on apple juice and waffles for 3 days.  Yesterday it changed to apple juice and bacon. It's the only thing I can even get myself to entertain the thought of eating. The apple juice because it keeps my legs from cramping up and decreases my headaches whenever I'm a little dehydrated.

 

I knew this wasn't going to be easy but I didn't expect it to be like this either. I have an appointment with a new therapist a week from today. I intentionally sought out someone who specializes in trauma therapy, but now I wonder if that was the right thing to do. Now I'm questioning if I should have looked for someone who specializes in addiction medicine instead. I guess we'll see what happens when I meet her and we talk about what's going on. That's a worry for another day.

 

I think the biggest thing for me right now is to learn to live right now and not worry about what's coming or what's happened. Just to focus on getting through this day this hour this minute.

 

So it's Wednesday and that's my day off. I'm laying here wishing I could go to work today because I feel guilty for calling in the last 2 days and I feel it's unfair to my co-workers to have to continue to carry my load.

 

I guess it's just about focusing on myself right now and making plans on how to get through this the next time. Hopefully it will get a little easier as I understand and accept what I'm going through and dealing with. Something tells me nothing is going to be easy for a long time though. I can get through tough times...my life has been pretty rough and i haven't given up yet. Why give up now?

 

I think the hardest thing is that the majority of my support comes from work and I can't tell them anything about this. How do you explain all the detox symptoms whenever you can't talk about why you have them without fear of loosing your job? It's going to be a long, rough ride but it will be worth it in the end.

 

 

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[[Pa...]]

Hi Magna,

 

Wow, you got hit pretty hard for your first cut, I'm so sorry!  Everything you describe is typical for this process, I just wish you could have caught a break early on, some suffer more at the end. 

 

So glad to hear your Dr is working with you on this, it's so important.  I don't see any reason to seek out an addiction specialist at this point if your Dr is on board with this.  A trauma counselor might be good for you, but only if you don't have to convince her that you are indeed suffering from benzo withdrawal.  Too many don't believe or understand the emotional, mental and physical pain we go through.

 

I wonder if you might need to slow your taper down a bit more, this reduction was pretty rough and you can't afford to miss this much work.  And on that subject, if your co-workers are a source of comfort for you, I'd share with them what you're going through.  We can provide some documentation to help them understand it if you'd like.

 

Pamster

 

[[Ma...]]

Pam,

 

This cut has been really hard and I'd pretty much concluded that it all had to do with the taper. To the best of my calculations it was a 6.25%drop.?

 

I suspect my doc will want to slow down once she finds out how rough it's been. Just not sure how to dry cut smaller without having to purchase a precision balance to use. (Frustrating because I use 3 high precision balances at work...). Maybe I could manage to cut the 0.5 into 6? I know someone who cuts a pill about the same size into 5ths...  6ths sounds easier...

 

You're right... I can't miss this much work and keep my job. Especially without being able to explain it. If I do tell what's going on they will insist on a 30 day treatment facility and that I be completely off the Klonopin before returning to work. The look at withdrawl from a prescription med that has been taken exactly as prescribed in the same way they look at any other addiction no matter what your doc says. Watched a coworker have to do the program to get off his pain meds that he titered himself off of because his doc told him no and wrote him a higher dose... When job found out he was put inpatient for detox and rehab and came back to work in worse shape from the "medical detox". I do not want them to do the same to me. It's fine to take prescribed meds as prescribed, but once you start trying to get off them my work gets all up in your business. 

 

Haven't met the new therapist yet, but I'll definitely be feeling her out on this topic before I commit. Hopefully it will be a good fit, but if not it won't be the first time.🤷

 

The start has been rough, but now that I know what I'm up against I'm somehow more comfortable.

[[Pa...]]

I find it incredible that you are to be penalized for trying to get off of a legally prescribed drug but not surprised, our world is upside down it seems.  Yes, no way do you want to go to a detox facility, they'll rip you off the drug, discharge you and leave you incapacitated for months if not years.  I'm so sorry you have to do this in secret, this is another reason then that you'll need to go at a snails pace.

 

Since you're familiar with scales, that might be the way you have to do this unless you want to consider liquid titration.  Given your reaction to your first cut, at yes 6.25, you'll most likely need to get on board with titration.  Most people can do this by cutting, but not sure about you, I'm sorry.

 

Glad you're going to vet your new therapist, you're going to need someone who will listen to and support you because this is a rough process.  Here is a resource which will be good for you both. https://benzoreform.org/

[[Be...]]

Hi. If at all possible, I'd try to avoid addiction specialists, as they tend to want to speed you off substances (my experience with my V withdrawal). Plus, seeing an addiction specialists has a stigma that would reinforce your work fears. Honestly, I've found it just best to be open about my situation. A lot of people understand and are sympathetic. I'm not suggesting that you say anything, but it has helped me. Yes, there should be no penalty for iatrogenic dependency withdrawal.

[[Ma...]]

Hi Benzo3,

 

Thank you for sharing your insight. I hadn't thought of things from that perspective. I'm really glad that I haven't pursued it yet.

 

[[Pa...]]

Are you feeling any better Magna, has the last cut settled down yet?

[[Ma...]]

Symptoms have settled down. Mornings are pretty good for the most part, afternoon headache, bloating, nausea and extreme fatigue seem to be the new norm. Afternoon symptoms follow my noonish dose. I try to take it at the same time every day, but my lunchtime varies over a two hour window.

 

I'm wondering if I can slowly move my noon dose toward evening in hopes of having less symptoms at work.

 

Also thinking about talking with my doc about liquid titration, but I feel like I would need to use one of the suspension liquids rather than water to have a better stability of dose. Trying to get my confidence up to be able to text a friend who is a pharmacist at a children's hospital for advise and best place to get a suspension liquid to use at the lowest cost possible. My insurance won't cover compounds and I can't afford to purchase outright in the quantities of need. I'm wondering if a very slow daily or every other day decrease would decrease the severity of my symptoms.

 

I'm having some obsessive fearful thoughts about the next reduction. I guess trying to work out the best way to reduce is how I'm coping with it.

 

That's probably more than you want to know so I'll stop there.

[[Pa...]]

I'm glad you shared your thought Magna, it's good to get them out.  I see no reason why you can't arrange your dose times to suit your lifestyle, this is one of the only things we can control in this process, so feel free to experiment.

 

I'm so glad you have a friend in the business, what a great resource.  We have some information about the use of suspensions here on the forum, let me know if you'd like some links.

 

Oh and being fearful and obsessive about your next reduction, absolutely normal, it's not a pleasant prospect to invite what will most likely be painful, who can blame you?

[[Li...]]

Greetings, Magna. I’m glad to learn that the symptoms from your reduction have settled down some, but sorry you are fearing your next reduction.  Am I understanding correctly that this was your first reduction?  If so, is it possible that “fear of the unknown” (i.e. not knowing what to expect) might be contributing to your fear?  If so, you may feel less fearful after you discover more about how you react to reductions (e.g. what your typical withdrawal symptoms are, how long they last before you feel ready to reduce again, etc.). 

 

Hats off for thinking ahead about talking to your doctor about a prescription compounded suspension! We have past and current members who have used/are using this approach successfully to taper clonazepam. I’m one of them. 

 

You are wise to reach out to a pharmacist friend for advice, especially given that s/he works at a children’s hospital.  The pharmacies at children’s hospitals are great sources of information about compounding b/c children often need special formulations of drugs. For example, in the U.S., a stability-tested formulation for a 0.1mg/mL clonazepam suspension is available online from Nationwide Children’s Hospital.

 

FYI -  many of our members (myself included) have found it helpful to use a combination of tablets and liquid to taper.  If you are in the U.S., the strengths of clonazepam tablets available are 0.125mg, 0.25mg, 0.5mg, 1mg, and 2mg.  (Another advantage of this approach is that it reduces the amount of liquid you need to have compounded.)

 

Might I ask how you determined that your insurance won’t cover compounding? Some don’t, but others do cover all or part of the cost.  So, I just want to double-check.  Even if yours doesn’t cover compounding, the cost for a one-month supply (especially when used in combination with tablets) is “reasonable.”  Based on data I’ve gathered, the costs range from a low of $15 a month to a high of $60 a month for a compounded suspension made with brand Klonopin (brand is quite pricey compared to generic).  Also, some compounding pharmacies have “value plans” (discount programs) for customers who are going to be using their services on a regular basis.