Seizures from rapid Xanax tapering

It seems no one wants to address the one thing that terrifies me.  My doc is totally disregarding the one concern I have, as he is rapidly trying to taper my 19 year long prescribed Xanax.  I was never informed of the risk of seizure.  My doc will not adhere to the Ashton method, nor will he even look at Kaiser/Permanente protocol.  Can ANYONE provide me with a thread that other people have experienced, with a too rapid tapering of Xanax?  I am fine with the non-life threatening sxs of tapering, but no one.....not my doc, or his primary nurse will assure me that this rapid tapering will NOT result in a seizure.  I am a widow.  I live in a VERY remote area, no neighbors, no close family, nothing.  If this rapid taper results in a seizure, I’m toast.  I’m terrified.  I just wish there were a thread on B.B. that I could read about anyone else who had an uncooperative doc, a too rapid taper, and anyone who could describe their experience with seizure, or reassure me that this dramatic taper will NOT cause seizure.  I’m getting zero help from my doc....and he is the top of the ladder as far as any assistance on this subject.  I feel like I’ve been left in a gutter to die.

Lady,

 

You have the right, as a patient in the Kaiser system, to demand your doctor taper you slowly.  If he/she is uncooperative, you can switch doctors.  That’s the upside to Kaiser.  There are several doctors to choose from.  I don’t live in a remote area, but I am with Kaiser.  You can’t switch doctors if there aren’t more available, but with Kaiser there should be, if not another GP, then a specialist.  With Kaiser. you must complain if you are not getting the health care you want.  Squeaky wheel gets the grease.

 

Sofa

In the remote area I live, we don’t have anything called Kaiser.  We have 1 behavior health clinic, and my doc is the psychiatrist.  I don’t have health insurance, so I have to pay cash.  I’m working on trying to find an advocate to help me persuade the doc to let me be more in control of my taper, but so far no luck.  I’m very angry right now about the doc.  He seems like he is putting his desire to discontinue my meds, before my health.  Again, I don’t mind the discomfort of other sxs....I just want to GAURANTEE that I won’t suffer a seizure. 

Sofa-

My doc is the ONLY prescribing Psychiatrist within 45 miles of me.  He is also the head of the board for our regional psychiatric hospital, and the director of a local treatment hospital.  I just want some reassurance that I can get this crap out of my system safely.  It seems like every place I read, or call.....they are all over the map about the issue of seizures.  It needs to be addressed.  I want to know at what dose do I have to drop to that seizures are not a risk.  Seems no one has an answer.  And my doc is not allowing me to be in control of my taper, at all.  He cuts me off in mid-sentence.  I’m so frustrated.

Some Dr's prescribe a seizure med short term during a rapid withdrawal.  I don't have an opinion on which med or side effects of such.  I c/t'd and was prescribed a seizure med for 3 weeks.  I think I should of been on it for at least 3 months.  I couldn't tell if there were side effects because of acute sxs, but...I am not aware of having a seizure.  I sure felt like it daily.  That 'aura' or feeling would come over me and I was certain I would drop.  Never did.  I know I had rapid out of control firing going on in my brain.  Probably involved focal or partial seizures.  I'll never know for sure.

 

Slowing your taper is your best bet.  Sorry you are fighting with the broken system.  This stress is causing your anxiety to spike through the roof.  It's just plain wrong...unethical.  I am so sorry.

In answer to your PM, I can tell you what i would do knowing what I know about Xanax from my own experience.

 

In your situation I would spread my daily dose to 4 times a day.  I would cut half of the 25% (roughly 10 to 15%) each week.  Xanax is short-acting and can be tapered faster than a long-acting benzodiazepine. I was able to cut every 3-5 days and you have two weeks in which you can taper the 25% he’s asking for.

 

It may be uncomfortable, but it shouldn’t be dangerous IMO.

 

I know you’re scared, but in reality I’d be concerned about symptoms, but not seizure.

Thank all of you who replied.  I know some of my concern is anxiety talking, and personally knowing people who have been irresponsible with CT, and ended up in hospital.  I will definitely try some suggestions, and also try to push the seizure fear to the back of my mind.  I appreciate all of you so much!

Lady,

 

You mentioned Kaiser in your original post.  That’s why I mentioned it.  If you are going to a clinic that is not Kaiser, I doubt your doctor will look at its protocol.

 

Sofa

Lady, I do understand. Living in a remote area (and how I envy you!) would make one more afraid of things like this.

Here is what I know, based on a many years as a nurse (not that being a nurse makes me some expert! LOL! This nurse managed to get addicted to benzos for 30 long years! I AM nurse Jackie!)  But what I have observed here on BB for 7 plus years and several other benzo forums, seizures seldom happen. Usually (but not limited to) to people who took benzos AND drank alcohol or took street drugs. Yes, seizures ARE [possible and you are wise in being concerned about this. But don't let your FEAR rule you, as FEAR is also a very common benzo wd symptom.

You might try just acknowledging your fear of seizures, and attempt to relax just a bit. There isn't anything you can do to prevent seizures unless you see a doctor and get a prescription for another drug. And if you do that, just be careful WHAT that drug is. Going through benzo wd taught me to NEVER take a drug again without doing some real research.

Would you let me know how you are doing? I cannot PM you, but you can always reach me on my Blog.

east

eastcoast2-

I posted on another thread.  I spent 5 days trying Tom reach my doc, his supervisor, lots of pestering them.  The nurse who saw me in office for about 15 years finally called me Anderson was able to communicate with doc.  After she explained my concerns, and she reminded him that I’m probably his most compliant patient....meaning never missed and appointment, never late, never filled a prescription early, etc.....he is now SORT OF working with me to ease my mind, and he said he would change my prescription to a smaller mg tablet.  I will find the other post I wrote, that has more detail, and post here.  Thank you for the inquiry. 

 

eastcoast2-

I spent the better part of the day yesterday on the phone, trying to get someone who would listen.  I was finally transferred to the nurse who saw me for several years.  We had a lengthy conversation about my concerns....and TBH, none of the staff at a Behavioral Health Center had ever heard of the Ashton Method or Kaiser.  My former nurse spoke to my doc, and he finally took the time to address my fears.  He is switching me to a lower dose Xanax tablet, but the same total mg per day.  This will allow me to dose 4 X per day, and reduce interdose w/d.  He also agreed that if I felt I needed a longer taper schedule, he would work with me on that, and long as he sees me continuing to reduce my dose each month.  He DOES want to see me making a cut at least every 2 weeks.  As it was explained, he wants me to listen to my body, and when I become comfortable with a new lower dose, after a day or 2 of comfort, taper again.  So basically, he wants me to feel w/d sxs for several days, then a couple days of relief, then a taper, and back to sxs.  He also relayed information about my fear of seizure risk, the nurse telling me that once I get to .5 mg total per day, I can play with reducing the number of doses per day, and then see if I can skip days.  He IS firm in his attitude that for me, anything lower than .25 mg total per day would be considered a sub-therapeutic dose.  He read a summary of Ashton Method, and disagrees with the part about getting down into anything less than a single dose of .125 mg, or half a .25 mg tablet I trust this nurse, and she has assured me that the seizure risk is very low at that  point.  I’m mindful of my physical sxs, and ready to suffer with those, as I know they are just uncomfortable,  it not life-threatening.

I know you are doing the best you can with the doctor's plan but do ANYTHING to not jump at 0.25 (1/4).  Get one (1) extra pill and break into 1/8 eighths (.125) for at least a 8 day taper from that to 0.

Lady, I do understand. Living in a remote area (and how I envy you!) would make one more afraid of things like this.

Here is what I know, based on a many years as a nurse (not that being a nurse makes me some expert! LOL! This nurse managed to get addicted to benzos for 30 long years! I AM nurse Jackie!)  But what I have observed here on BB for 7 plus years and several other benzo forums, seizures seldom happen. Usually (but not limited to) to people who took benzos AND drank alcohol or took street drugs. Yes, seizures ARE [possible and you are wise in being concerned about this. But don't let your FEAR rule you, as FEAR is also a very common benzo wd symptom.

You might try just acknowledging your fear of seizures, and attempt to relax just a bit. There isn't anything you can do to prevent seizures unless you see a doctor and get a prescription for another drug. And if you do that, just be careful WHAT that drug is. Going through benzo wd taught me to NEVER take a drug again without doing some real research.

Would you let me know how you are doing? I cannot PM you, but you can always reach me on my Blog.

east

It seems no one wants to address the one thing that terrifies me.  My doc is totally disregarding the one concern I have, as he is rapidly trying to taper my 19 year long prescribed Xanax.  I was never informed of the risk of seizure.  My doc will not adhere to the Ashton method, nor will he even look at Kaiser/Permanente protocol.  Can ANYONE provide me with a thread that other people have experienced, with a too rapid tapering of Xanax?  I am fine with the non-life threatening sxs of tapering, but no one.....not my doc, or his primary nurse will assure me that this rapid tapering will NOT result in a seizure.  I am a widow.  I live in a VERY remote area, no neighbors, no close family, nothing.  If this rapid taper results in a seizure, I’m toast.  I’m terrified.  I just wish there were a thread on B.B. that I could read about anyone else who had an uncooperative doc, a too rapid taper, and anyone who could describe their experience with seizure, or reassure me that this dramatic taper will NOT cause seizure.  I’m getting zero help from my doc....and he is the top of the ladder as far as any assistance on this subject.  I feel like I’ve been left in a gutter to die.

 

I am not a Dr and not an expert but I get what you are going through.  I had the same exact thing happen regarding my Clonazepam taper. I basically told them I was doing it MY way... that I didn't feel mentally ok with tapering quickly.  I took the Ashton manual in my Dr's office and they flat out said they were not going to give me Valium and they pretty much dissed Dr. Ashtons manual. My Dr. only knows that I went from 0.5mg to 0.25 and didn't ask for details. My Dr. thinks I am still on 0.25 mg PRN! I know right?  I might get in trouble here for saying this but I'm doing the taper my way... the way that is working for me.  Doing a basic cold turkey off a Benzo is not smart and unfortunately I cannot find a Dr. around me that wants to support me.  So I have four more months to go and then I will tell my Dr. that I'm done... because I will be! I have a visit tomorrow and since I get four months of refills I will not need to go back for C after tomorrow.  You have to take control of what is comfortable for you or find someone else.  In the mean time if they try to push a rapid taper I would just stay on the amount you are on until you find someone to work with you and figure it out. 

How has it been going?  Do you have many side effects?  So frustrating to not get any medical support for this!  I have to taper from .5 also.

It seems no one wants to address the one thing that terrifies me.  My doc is totally disregarding the one concern I have, as he is rapidly trying to taper my 19 year long prescribed Xanax.  I was never informed of the risk of seizure.  My doc will not adhere to the Ashton method, nor will he even look at Kaiser/Permanente protocol.  Can ANYONE provide me with a thread that other people have experienced, with a too rapid tapering of Xanax?  I am fine with the non-life threatening sxs of tapering, but no one.....not my doc, or his primary nurse will assure me that this rapid tapering will NOT result in a seizure.  I am a widow.  I live in a VERY remote area, no neighbors, no close family, nothing.  If this rapid taper results in a seizure, I’m toast.  I’m terrified.  I just wish there were a thread on B.B. that I could read about anyone else who had an uncooperative doc, a too rapid taper, and anyone who could describe their experience with seizure, or reassure me that this dramatic taper will NOT cause seizure.  I’m getting zero help from my doc....and he is the top of the ladder as far as any assistance on this subject.  I feel like I’ve been left in a gutter to die.

 

I am not a Dr and not an expert but I get what you are going through.  I had the same exact thing happen regarding my Clonazepam taper. I basically told them I was doing it MY way... that I didn't feel mentally ok with tapering quickly.  I took the Ashton manual in my Dr's office and they flat out said they were not going to give me Valium and they pretty much dissed Dr. Ashtons manual. My Dr. only knows that I went from 0.5mg to 0.25 and didn't ask for details. My Dr. thinks I am still on 0.25 mg PRN! I know right?  I might get in trouble here for saying this but I'm doing the taper my way... the way that is working for me.  Doing a basic cold turkey off a Benzo is not smart and unfortunately I cannot find a Dr. around me that wants to support me.  So I have four more months to go and then I will tell my Dr. that I'm done... because I will be! I have a visit tomorrow and since I get four months of refills I will not need to go back for C after tomorrow.  You have to take control of what is comfortable for you or find someone else.  In the mean time if they try to push a rapid taper I would just stay on the amount you are on until you find someone to work with you and figure it out. 

 

How is it going so far?  Any side efffects? I have to taper from .5 also. So frustrating to not have any medical support!

Lookinup-

Thanks for your reply!  I’m sorry you...or ANYONE has to deal with ignorant docs who won’t even look at any documents on a SAFE taper.  I had to call so many people to be heard.  My doc refuses to switch me to diazepam, which is actually more effective for me, personally, but he has an attitude about diazepam.  He was supposed to call the pharmacy and change my 1 mg tablets (Xanax) to .5 mg, so I could micro dose.  Right now, at .5 mg three times a day causes some moderate interdose withdrawals.  So far, he has NOT called in that substitution either.  It’s frustrating, and all I can say is that since I’m in a remote area, and have very little stress or outside influences, I can deal with my  sxs.  I’m supposed to be cutting another .25 mg out, but it’s nearly impossible to cut a 1 mg tablet into quarters.  I’m going to be making more calls, because I refuse to be a victim.  I’m only going to do this taper/jump thing once.  And it’s going to be successful.  Like you...when I’m done with this taper, I’m done with this doc.  He couldn’t care less if I suffered sxs, or heaven forbid, a seizure. 

You have the right attitude!  You’re the boss of your mind and body!  Take your time, (4 months), and keep advocating for your health!  😊

Lookinup-

Thanks for your reply!  I’m sorry you...or ANYONE has to deal with ignorant docs who won’t even look at any documents on a SAFE taper.  I had to call so many people to be heard.  My doc refuses to switch me to diazepam, which is actually more effective for me, personally, but he has an attitude about diazepam.  He was supposed to call the pharmacy and change my 1 mg tablets (Xanax) to .5 mg, so I could micro dose.  Right now, at .5 mg three times a day causes some moderate interdose withdrawals.  So far, he has NOT called in that substitution either.  It’s frustrating, and all I can say is that since I’m in a remote area, and have very little stress or outside influences, I can deal with my  sxs.  I’m supposed to be cutting another .25 mg out, but it’s nearly impossible to cut a 1 mg tablet into quarters.  I’m going to be making more calls, because I refuse to be a victim.  I’m only going to do this taper/jump thing once.  And it’s going to be successful.  Like you...when I’m done with this taper, I’m done with this doc.  He couldn’t care less if I suffered sxs, or heaven forbid, a seizure. 

You have the right attitude!  You’re the boss of your mind and body!  Take your time, (4 months), and keep advocating for your health!  😊

 

 

Utterly amazing that this goes on when someone is trying to HEAL themselves!  Keep calling and get what you need!  You also CTd Ambien?  How was that?  How long did you take it?  You are doing a great job on your own!  How is sleep?  I worry about that!

Lookinup-

My CT from Ambien was horrible.  I didn’t sleep at all for 2-3 days.  Then after talking to doc, he said I could take 1/2 a 10 mg Ambien every third night, if I didn’t sleep at all the other 2 nights.  It took about a month for me to stop the Ambien.  Now I just take a dose of Benadryl, or UNISOM (Doxylamine), If I need help with falling asleep. 

Lookinup-

My CT from Ambien was horrible.  I didn’t sleep at all for 2-3 days.  Then after talking to doc, he said I could take 1/2 a 10 mg Ambien every third night, if I didn’t sleep at all the other 2 nights.  It took about a month for me to stop the Ambien.  Now I just take a dose of Benadryl, or UNISOM (Doxylamine), If I need help with falling asleep.

 

Thanks, that’s what I expected.  How long did you take Ambien?  It is a horrible drug anyway, lucky if I fall back asleep after waking up from only a few hours!  When I try cutting it, I sure feel it. Can’t imagine CT!

Why is he forcing you to taper

Daniel123-

My doc was instructed by HIS supervisors, that due to the epidemic of prescription drug abuse, he has to get as many patients to taper completely off ALL controlled substances.  He told me just a couple of years ago that I would be on my medication for my life.  I had been considering tapering, even before he brought it up.  Im tired of being a slave to medicine.  My life with P.T.S.D. and anxiety, when I’m medicated, is no different than my life has been since tapering.  Im kind of a recluse, I enjoy solitude, and I can avoid all the little “dramas” that can happen when out in public.  In the 7 weeks since beginning this taper, my doc has changed his protocol 3 times.  It’s a rollercoaster ride.  He refuses to do a C/O to Valium.  He will NOT read the Ashton Manual.  He originally told me I had 3 months to taper.  Now he is saying it could take a year, but his taper schedule is so dramatic, doing my math, I would be off by January.  I’m just trying to keep a positive mental attitude, eat healthy, avoid stressors, and even while having sxs, I look forward to my next taper.  I’m not screwing around with this...my taper WILL BE successful.  😊

To put it bluntly, your Dr is a dumb shit, my neurologist told me that even if you are taking a sub therapeutic dose it is still adversely affecting the receptors, most docs seem to use that statement as their fall back to not tapering slowly, my original doc did. She Ctd me, reinstated me, CTd me again, reinstated me again and finally dragged me off on a way too rapid taper. Then I had a stroke. 22 months off now and I'm still suffering terribly, not to mention another recent stroke due to the damage that was done. My life and health are ruined and other docs are having to try and fix the mess she caused. Please try and taper slowly, i would move heaven and earth to find another Dr. Best wishes. Someone that actually remembers his Hippocratic oath.

Daniel123-

My doc was instructed by HIS supervisors, that due to the epidemic of prescription drug abuse, he has to get as many patients to taper completely off ALL controlled substances.  He told me just a couple of years ago that I would be on my medication for my life.  I had been considering tapering, even before he brought it up.  Im tired of being a slave to medicine.  My life with P.T.S.D. and anxiety, when I’m medicated, is no different than my life has been since tapering.  Im kind of a recluse, I enjoy solitude, and I can avoid all the little “dramas” that can happen when out in public.  In the 7 weeks since beginning this taper, my doc has changed his protocol 3 times.  It’s a rollercoaster ride.  He refuses to do a C/O to Valium.  He will NOT read the Ashton Manual.  He originally told me I had 3 months to taper.  Now he is saying it could take a year, but his taper schedule is so dramatic, doing my math, I would be off by January.  I’m just trying to keep a positive mental attitude, eat healthy, avoid stressors, and even while having sxs, I look forward to my next taper.  I’m not screwing around with this...my taper WILL BE successful.  😊

 

I've been on Xanax for over 15 years, and my psychiatrist wanted to do a 30-day taper and when I mentioned seizures, she ignored it and flippantly said (without even looking at me) "Take buspar or trazadone", and I was too shocked and angry to tell her what she should have already known (if she had spent 5 seconds reading my file, knowing my past experiences with them)..

 

I also live alone, and I don't see or talk to people and in a state where I rather do nothing than to engage in drama. It angers me that the same business-people who put you on the same medication, all of a sudden want to cut you off. I got tired of being a guinea pig, and perhaps my mention of "Xanax is the only thing out of 30 medications that have worked for me, and I'm not going to try anything else" might have given her extra reason to turn my life into a living hell. I won't doctor shop, because I don't wanna go through this again.

 

A year tapering off hopefully isn't too hard on you. I wish you the best of luck - I'm thinking of starting tonight, so I can get it over with, and so I don't keep waiting, and be forced to a much rapid taper (I have leftover Xanax from years of use).

 

If your doctor does you wrong, maybe the best thing for you (and everyone) is to complain, leave bad reviews, so that no one else has to go through this.

To put it bluntly, your Dr is a dumb shit, my neurologist told me that even if you are taking a sub therapeutic dose it is still adversely affecting the receptors, most docs seem to use that statement as their fall back to not tapering slowly, my original doc did. She Ctd me, reinstated me, CTd me again, reinstated me again and finally dragged me off on a way too rapid taper. Then I had a stroke. 22 months off now and I'm still suffering terribly, not to mention another recent stroke due to the damage that was done. My life and health are ruined and other docs are having to try and fix the mess she caused. Please try and taper slowly, i would move heaven and earth to find another Dr. Best wishes. Someone that actually remembers his Hippocratic oath.

 

Hi southern star.

 

We understand some members of our community may feel betrayed or let down by their doctors, but ask that all members follow the posting guidelines as far as making disparaging remarks about doctors in general.

 

From BB’s guidelines: Anti-doctor, Anti-psychiatrist and Anti-medicine Comments and Links

 

By suggesting that others should not trust doctors, psychiatrists and the medical profession as a whole, you potentially endanger other members and visitors to this forum. BenzoBuddies is not an anti-doctor or anti-psychiatry website. Our members need their doctors, not only to supply them with prescriptions for benzodiazepines, but to meet their other medical needs too. In short, you are free to describe the shortcomings in your own medical treatment, but make clear that you are writing about your personal experiences; do not spread general anti-doctor or anti-psychiatrist propaganda.

 

Thank you,

Challis