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Tapering from Butalbital and Klonopin

I was told by my new neurologist that the butalbital is causing MOH..which I understand..he said to stop it...I asked how? He said just do it! I'm too afraid...I have begun tapering from 4 a day to 3 a day but everything I read says do this under medical supervision...I was on aimovig from July 2018-February 2019 they stopped because I started to feel super sick...we were in the process of moving and no headache specialist (ones that previously were my docs....Abraham Nagy was one) would not see me! My new neurologist (I love in Atlanta now) put me back on aimovig last week on October 2 in his office...I injected myself in his office. He said if you need help go to the diamond headache clinic in Chicago (where I have been an inpatient in 2004) or Jefferson in Philadelphia?? I can't get in I'm sure without a long wait...I'm at a loss..I used to be a member of the Migraine.com community but don't read it so much anymore..I'm reaching out now of great great and desperation. I need to get rid of butalbita...prescribed incorrectly by yet another "good" neurologist Dr. Joshua Turknett (my migraine miracle author and part of the migraine world summit) he also refused to take me back as his patient, and then next is getting rid of Klonopin (low dose.05mg twice a day). Neurologist wants me off butalbital first...help me, please...I dont know where to turn. I've never been so disillusioned by so many neurologists in my 43 years of suffering....nobody cares and I honestly don't know what to do... 🙁

Long-time reader with respect,
Janet Jones

Thank you kindly in advance for any direction you might have for me.

  1. Hi Janet, thank you for reaching out! I hear what an ordeal you have been through with neurologists and trying to find answers. It is so frustrating when you feel rejected and let down by doctors who you have trusted to act in your best interest and care for you. We cannot offer medical advice over the internet (for your safety!) but your concerns certainly warrant a more complete response! For tapering off the butalbital, I would encourage you to reach out to your neurologist's office and see if his nurse or physician assistant might be able to take time to discuss your concerns and find a tapering plan that works for you. You might discuss plans for the Klonopin as well! It is also worth saying that, if this new neurologist is not taking time to fully respond to your questions and address your concerns, you are within your right to look for a different practitioner. I know that feels overwhelming with all the changes you have been through already! But you deserves someone who prioritizes your health and well-being.
    Getting an appointment at a headache clinic like Diamond or Jefferson can indeed involve a lengthy waiting period. However, it might be worth getting an appointment scheduled. When the time comes, if you do not feel you need it you can always cancel it, but if you wait and determine you do need it, it becomes that much longer before you can be seen.
    How have you been feeling since restarting Aimovig? I hope that may begin to offer you better relief this time around. Please keep us posted on what you learn and how you are managing. Know we are always here to listen when you need support. Wishing you a gentle day. ~Allyson (Migraine.com team)

    1. Thank you for responding so quickly. As I stated..my new neurologist told me to just stop the butalbital...the only help I've received is from my pharmacist...he said what I'm don't is safe..so I dont feel safe..klonopin I was told today by an addiction therapist that I would need a psychiatrist to help with that...but one step at a time..I need to rid of fioricet....I feel extremely defeated and heartbroken by the so called Healthcare professionals who say they can't help me..my goodness...having been in the diamond headache clinic..I'm pretty sure they won't like the fact I'm on aimovig..they like you on their "elixers" that their pharmacies prescribe...but they helped when the neurologist I went to said I could take as much imitrex as I wanted as often as I needed!!!!WOW!!! That's how I ended up in the clinic...as far as aimovig..it's working again..have only had 1 triptan since October 2 injection...my husband and I decided to go to a neurologist nearby our home to ask for help...we are going to walk in and go from there..all I can be told is "I can't help you" again..I've cried many tears over this...my plate is full..my husband is actually at church tonight thanking God that the mole on his head was just a mole..and the doc used the freeze spray..last week not so fortunate..cancer surgery on his left hand was performed...this one not as bad as 4 years ago..same hand...same awful cancer..so we are doctored out...I'm getting far to wordy...I'm just overwhelmed she not myself weaning from a narcotic med..the anxiety and fear is awful! I will let you know what happens with the local neurologist..silly me going to the one at piedmont hospital who supposedly was so terrific...with respect..Janet Jones

      1. Janet
        I feel your pain. I’ve suffered since I was 15 with chronic migraines and no one ever diagnosed me until 4 years ago. I was managing with extra Strength Tylenol (haha) and BC powder and coke mixed together. Then my GP gave me topiramate and zomig ZMT and those have been wonderful. But don’t solve my issue. My PCP in Nashville had put me on Fiorcet and butalbital and my neurologist said the same thing nope if we are going to treat you you need to come off those meds because they’re a duplication. But they worked. Oh my god. I don’t care if they’re a duplication— they were working!!!

        Once I moved to Nashville it took me 5 tries to find a neurologist who would work with me and hold true to his word to help me. He got me in Botox which I think is no longer paralyzing my neck muscles because my migraines have been coming back lately but it was working for a while there. But I am still hopeful.

        I wish you luck Janet.

        1. If you are in Atlanta the only good nuerologist for migraines is Dr espers Emory
          He is hard to get in!
          Other than that John Hopkins has a great migraine center in Maryland
          I got brain damage in Atlanta and too many do not know what they are doing
          Sorry to say this if you do not mind giving out name I can tell you more
          All the best Deb

          1. Deb,
            Oy my gosh!! How did you get brain damage in Atlanta?? What do you mean by "brain damage"?'

            My pastors wife sees dr. Esper...I tried when we moved back here to get in with him..however the wait was January then within a few days jumped to March that was this past August ..which there was no way I could wait that long. Another friend recommended dr Robert Gilbert ..NOOOOO bedside manner whatsoever! He scolded me for talking butalbital 4 times a day. Said I should give AIMOVIG another try and STOP the butalbital. I asked how? He yelled just do it! After a week my husband called to talk to his nurse...she gave us a tapering schedule that I couldn't follow...it was too harsh. I am glad to say I am down to 2 butalbital ..one every 12 hours...I'm hoping to drop to one a day in a week..it's been a month since I started this process..way back it was prescribed to me by dr. Joshua turknett (my migraine miracle author) and my neurologist at the time...after an extensive periodontal surgery that triggered migraines horribly...so that's how this merry go round began...in not a doctor so why would I question how my neurologist prescribed relief for me??? When we moved back to Atlanta from Las Vegas , dr. Turknett wouldn't take me back...and I've had some good neurologists...but not for years....Moving forward...I think I will try to get on a wait list with dr. Esper, although my friend was put on topamax..she didn't even know she was having migraines...dr. Esper told her after cat scans and MRI's....so back to topomax....which I took for years and caused the bone loss in my teeth resulting in that surgery I had 5 years ago...couldn't pay me to take that again...BUT I understand he's the best here...dr. esper. You have really frightened messaging you got brain damage here. I hope you reply.
            Thank you for writing to me,
            Janet

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