DebbieC61: carbamazepine tapering info needed

[DebbieC61]

I am currently taking 40mg of duloxetine (Cymbalta)and am using a compounding pharmacy to taper at 5% reductions which is all I am able to handle right now. I am also taking ziprasidone (Geodon), which I plan to taper at a later date, and carbamazepine. The duloxetine and ziprasidone are in capsule form which makes for easier tapering. However, the carbamazepine (Tegretol) is in tablet form so I'm wondering if anyone here has tapered from carbamazepine (Tegretol) and how it is done.

 

Edited January 10, 2019 by ChessieCat
added drug names

[Gridley]

Welcome to SA, DebbieC61.

 

To give members the best information, we ask them to summarize their medication history in a signature -- drugs, doses, dates, and discontinuations & reinstatements, in the last 12-24 months particularly.

 

Account Settings – Create or Edit a signature.

 

You wrote that you are tapering with a 5% reduction.  How often do you make this reduction? We recommend reducing no more often than every four weeks.

 

Why taper by 10% of my dosage?

 

Tegretol comes in a liquid suspension that you could taper.

 

Questions and answers about liquid medications

 

We recommend tapering only one drug at a time, as you are doing.  We also suggest that you taper the most activating drug first, so the more sedating drugs can act as a buffer.  You are correct to taper the Cymbalta first.

 

Taking multiple psych drugs? Which drug to taper first?

 

You do need to be aware that there are drug interactions among your drugs.

Drug Interaction Checker - Find Interactions Between Medications

 

SERIOUS

• Tegretol oral + Cymbalta oral

  Potential for serious interaction; regular monitoring by your doctor required or alternate medication may be needed

  Tegretol oral will decrease the level or effect of Cymbalta oral by altering drug metabolism

Monitor closely

• Tegretol oral + Geodon oral

  Potential for interaction 

  Tegretol oral will decrease the level or effect of Geodon oral by altering drug metabolism

This is your introduction topic where you can ask questions and post updates.

[DebbieC61]

Hi Gridley--

Thank you for your response. I am now tapering 5% every thirty days or more. I go by how my body feels. I had started drops of 10%--or 5mg every 30 days from 60mg, but when I went from 45mg to 40mg I started having withdrawal symptoms--anxiety accompanied by tightness in the chest, muscle cramps, eyelids twitching and frequent urination which is what I have when I have severe anxiety. It's the fight or flight syndrome kicking in but I know it's from withdrawals. I got a prescription to reinstate up to 45mg but wound up stabilizing at 40mg, which is where I am now. All withdrawal symptoms have subsided and I am planning to try dropping down to 38mg with my next refill, and see how I do with that.

 

It's going to be awhile before I begin my carbamazepine taper because I have to finish my duloxetine and ziprasidone tapers first. I know it's going to be years before I get to that point but I'm trying to educate myself so I can be prepared when I go to talk to the doctor about it. Thank you for the info.

[Carmie]

Hi Debbie, 

 

I wanted to welcome you to SA as well. I’m also tapering at around 4% to 5%. I found that the lower the doses I was on the lower I would have to taper percentage wise. This is very common, and happens to a lot of people. I did get withdrawals though, even in the large doses. I started at 300mg and I’m now down to 7.5mg.

 

All the best with your next drop 💚

[DebbieC61]

Hi Carmie--

Thanks for your reply! Wow you have come a long way with your taper. I'll be glad when I'm finally where you're at as far as dosage, but I know it's going to be awhile. Slow and steady I keep reminding myself. I'm in no hurry. I see from your signature that you have also been in the psych ward for akathisia. When I went through Keppra withdrawal the wrong way, I developed PAWS along with akathisia and wondered what was wrong with me. At the time I didn't relate it to withdrawal. I only recently learned there was a name for the condition--akathisia. What a frightening state to be in. I was in the psych ward 4 times that year. Through my research have learned a lot about withdrawal--unfortunately a lot from my own experiences but it has taught me well what I want to avoid.

 

Thanks for sharing your experiences and continued success with your taper 💚

 

[Carmie]

Hi again Debbie, 

 

It certainly sounds like we’ve been through similar experiences. I’ve been in the psych ward three times because of akathisia. I thought there was something terribly wrong with me physically and emotionally, but it was with withdrawals all along. If it takes me another ten years to get off the 7.5mgs, which it might if I do the brassmonkey slide next, so be it. I am in no hurry, I really don’t want to go through acute akathisia again, I was suicidal.

 

There was nothing mentally wrong with me, I ended up on meds because of chronic pain. I do have a chronic illness as well, CFS. I remember someone on here went through absolute torture which all started due to migraines. 

 

We will get there in the end. Just go slowly and make sure to have long holds. 

 

I did a silly thing last year and swapped to compounding capsules. I didn’t know at the time that compounding formulas aren’t all that accurate. Brassmonkey brought this to my attention.  I’m now cross tapering back to my original tablet. I water titrate, so now I have to water titrate two different formulas every night. My brain is in lala land most of the time, and I have to be careful not to make mistakes. So far the crosstaper is going okay, but nothing about withdrawals is linear so we can just take an hour at a time. 

 

Wishing you all all the best, please continue to keep us updated as to how you go, sending hugs🤗

 

 

[DebbieC61]

I sure will post updates. Hugs right back 😊

[Gumtree]

Hi DebbieC61,

good to hear you’re tapering off Cymbalta and I hope it goes smoothly for you. I have been on Cymbalta a lot longer than you so I find I need to slow the rate right down to tiny drops, especially as I am on Keppra, and I feel (in my case) that the taper can kick off some ‘seizure like’ activity for me if I do too big a drop.  I’m on Keppra and Cymbalta and have seizure history, but I have previously been on Tegretol and tapered off that prior to going on Keppra. 

 

It was decided to give me Keppra because it was a ‘newer’ drug and thought to be more stable and have less side effects than Tegretol. So I was switched, with a taper over a month and ‘washout’ period of two weeks of nothing in between ending Tegretol and starting Keppra.  I was instructed by my neurologist to comeoff Tegretol by decreasing my dose of Tegretol by half each week, over the course of a month.  I was on a daily dose of 2x200mg, twice daily (800mg per day).  I didn’t know any different other than to trust that he knew what he was talking about, however it was difficult to manage and I needed help and support.  Particularly because it threw me into seizure activity, weird feeling, auras and awake-seizures/absences during the whole period.

 

Now, the real difficulty is trying to distinguish what was genuine seizure activity, happening because my epilepsy was no longer under control by the drug, and what seizure activity was kicked into action because my brain could cope with rapid withdrawal.  Tricky huh? I believe strongly that it was a mix of both, but my neurologist, who saw me for 20minutes during a six week period, believes it is the underlying epilepsy.

 

During the Tegretol rapid taper I was trying to work fulltime although was not safe to drive and could not remember anything, including basic words.  I rapidly developed a stutter and although I was on auto pilot and seemed to function, I have absolutely no recollection of about three or so weeks.  My partner tells me stories of what happened in that time, just everyday things, but I have zero memory of anything.  I did have EEG scans and MRI etc whilst off the Tegretol which confirmed seizure activity and I improved rapidly (in about a month) when I went on to the Keppra except for the insominia and deep depression (yeah, nice.) 

 

Obviously thhis is just my experience, and yours may be different depending on your brain, seizure activity, and sensitivity to medication and particularly when withdrawing.  Given you had a difficult time with withdrawal off Keppra, it will be important to go slowly off Tegretol if that’s what you choose at the time. Now that you’ve found a compounding pharmavy, that might be the best way to go in terms of getting an accurate dose made.  If it was me, I would be super strict about the time I took the decreased doses and spread them out in the day (into two or three smaller even doses) to try to minimise the daily rollercoaster.  That too is difficukt as you are ruled by the alarms but it might make the ride smoother. 

 

I know your Tegretol taper might be years away yet, but you will need to consider why you want off it and how well your brain recovers from the Cymbalta taper. You indicate you’ve had a brain surgery, so I don’t know if you had seizure history or the anti-seizure medication was given as a precaution after the surgery.  Either way, if you are prone to seizure like activity or full blown seizures, you’ll need to consider the impact of not being on any anti-seizure medication and how that will impact your lifestyle.  I’m not saying don’t get off it, I’m just saying there are difficulties to live with either way.  

It may be that you can do a taper off Tegretol slowly and work out what is a ‘therapeutic minimum’ dose. Like the least amount you have to take to maintain no seizure activity.  You can then decide whether to stay on that minimal dose or get off totally.  That means you’ll have to do it slowly and stay on a lowered dose to see how you go, rather than doing an ongoing gradual decrease.  

 

The other thing is that the Cymbalta withdrawal that you are doing now ‘might’ exacerbate any actual seizure activity in your brain OR the withdrawal might activate seizure activity (that is not there as an underlying issue but is as a direct result of the withdrawal).  It is so, so, difficult to work that out and doctors defer to it being the underlying seizure issue.  

 

Whatever you choose to do, remember you are recalibrating your main computer (brain) and that is not quick or easy.  Stay as healthy as you can be and go really slowly.  All the best, 

[Carmie]

Hi Debbie, 

 

How are you doing?💚

[DebbieC61]

Hi Carmie--

So far, pretty good. I am now down to 34mg of duloxetine/Cymbalta and doing okay however I'm getting nervous as I begin to near 30mg as I know the lower I go, the less I can reduce. Thinking I may have to switch over to bead counting instead of relying on the compounding pharmacy as I near the end of my reduction. I don't know if the compounding pharmacy can make 29.25mg, 29.50mg or 29.75mg capsules for example because he runs a small pharmacy and is always in the lab working on compounding prescriptions when I call in for refills, so I don't really get the opportunity to talk with him. I guess I'm going to have to make it a point to talk with the pharmacist soon so I can decide how I'm going to finish coming off of this nasty drug. Sorry for the late response.You sure have come a long way with your taper. Seroquel is in tablet form, right? How are you managing the small reductions with the tablets? How is that done? Are you doing a liquid taper?💙

 

[DebbieC61]

Gumtree--

Sorry for the late response--I appreciate your taking the time to write such good advice. I was put on Tegretol after having one grand mal seizure which occurred 3 years after my brain surgery. Before that I had no seizure activity at all. However, I'm not sure if the seizure was a result of the brain surgery of a result of being rapidly switched from Zyprexa to Geodon. I will keep in mind all you have said. Still trying to come off this nasty duloxetine/Cymbalta. I see you're having the same problems with the Cymbalta too. What size capsules are you using to refill with the beads--the #00? I may wind up counting beads myself. Let me know how you're doing.

[Carmie]

Hi Debbie, 

 

I’m glad you’ve been doing well so far. Yes, Seroquel is a tablet, and I’m water titrating. I crush my 25mg tablet with a mortar and pestle and add 20ml of water to it. 

 

Wishing you all the best with your continued tapering💚

[DebbieC61]

Topic title:  Beyond hopeless duloxetine Withdrawal

 

I feel beyond all hope. I was using a compounding pharmacy to slowly taper from duloxetine and it had taken me a year to go from 60mg to 28mg symptom free. The compounding pharmacy closed so I had no choice but to switch to a regular pharmacy and get a scrip for 30mg. I had my empty capsules so my husband and I calculated how many beads to remove to make the equivalent of 28mg. That week I began to experience withdrawal symptoms so I immediately added the beads back in to make it again a 30mg capsule. I improved for a couple of days then the withdrawals came on strong again. I would take my pill in the morning. It would take 6 hours to kick in giving me a few hours of relief then 6 hours later would wear off. So I started taking another dose of 30mg at the 12 hour mark. This had me going through withdrawals twice a day for about 6 hours each. So I started taking both 30mg capsules together in the morning. It seemed to help for a couple days now I’m back to having severe withdrawals every morning until the drug kicks in.And I mean severe excruciating nerve pain all up and down my arms and shoulders, left eyelid twitching and my ankles and toes start cramping up, profuse sweating, tightness and burning in the chest.I’m really scared I will never stabilize and that I will always be like this. What should I do? 

 

Edited August 26, 2019 by ChessieCat
added topic title

[Altostrata]

I'm sorry you're having these problems, Debbie.

 

When did the compounding pharmacy close? Were they repackaging beads into new custom capsules? How long have you been taking 60mg again?

[ChessieCat]

If you cannot find a pharmacist who will compound your drug I suggest you contact the main compounding association in your country and ask them if your drug can be compounded and if it can, to advise you of a pharmacy who can do the compounding for you.  Or you could ask the compounding pharmacy to contact the compounding association.

 

PCCA - Professional Compounding Centers of America

 

you can contact them via the website OR

 

Use this:        Subject:   ATTN:  Clinical Compounding Pharmacist

 

customerserviceexternal AT SYMBOL pccarx DOT com

[DebbieC61]

17 hours ago, Altostrata said:

I'm sorry you're having these problems, Debbie.

 

When did the compounding pharmacy close? Were they repackaging beads into new custom capsules? How long have you been taking 60mg again?

Hi Altostrata,

The compounding pharmacy closed the end of July and he was repackaging the beads into new custom capsules. I’ve been taking 60mg first in divided doses 30mg twice a day but that wasn’t working, I was suffering withdrawals twice a day so I started taking both capsules once a day for less than a week and that seems to be helping. Yesterday I had a big beautiful window where I was symptom free except for some sweating. This morning I woke up with some withdrawal symptoms again however not as severe as they have been.

[DebbieC61]

14 hours ago, ChessieCat said:

If you cannot find a pharmacist who will compound your drug I suggest you contact the main compounding association in your country and ask them if your drug can be compounded and if it can, to advise you of a pharmacy who can do the compounding for you.  Or you could ask the compounding pharmacy to contact the compounding association.

 

PCCA - Professional Compounding Centers of America

 

you can contact them via the website OR

 

Use this:        Subject:   ATTN:  Clinical Compounding Pharmacist

 

customerserviceexternal AT SYMBOL pccarx DOT com

Thank you ChessieCat.

[DebbieC61]

On 8/27/2019 at 1:42 PM, Altostrata said:

I'm sorry you're having these problems, Debbie.

 

When did the compounding pharmacy close? Were they repackaging beads into new custom capsules? How long have you been taking 60mg again?

Now I realize that increasing the dosage I’ve made a big mistake. Now I’ve created a worse mess.So depressed.