Clonazepam and Doctors

[badnights]

I am so over these doctors. They have no idea how many lives are lain to waste with such proclamations.

Amen.

[Polar Bear]

Absolutely!!

[Caitrin]

I have printed and thoroughly read the Mayo Clinic document provided by Steve and many thanks for that. The state of New Jersey has the strictest laws regarding the prescribing of opioids for RLS. However I will give my neurologist a copy of the article at my appointment this month with of course no hope that he will be willing to prescribe one of the approved opioid medications. I am looking forward to my appointment with the psychiatric nurse in another week. Thank you all for your interest and input.

[Polar Bear]

Good luck and we hope you have positive appointments.

[Caitrin]

Thank you. I certainly hope so. I have one thing to add: last night I awakened in a sweat and felt shaky so took 1 mg of my Clonazepam and slept well until morning. Today I have energy and feel “normal “ again. My own attempt to taper did not work. I am reminded of a previous post about a member’s mother who was unable to taper the same med. Similarly, I at age 76 will have to simply lower my dose for the duration.

[ViewsAskew]

Thank you. I certainly hope so. I have one thing to add: last night I awakened in a sweat and felt shaky so took 1 mg of my Clonazepam and slept well until morning. Today I have energy and feel “normal “ again. My own attempt to taper did not work. I am reminded of a previous post about a member’s mother who was unable to taper the same med. Similarly, I at age 76 will have to simply lower my dose for the duration.

There are compounding pharmacies that will mix it for you as a suspension liquid, which is SO much easier to use to decrease. I didn't have one by me - I remember shaving off little slivers each time I would reduce. Took about 7-8 months

[Caitrin]

This week I met with my new psychiactric nurse. It was a very positive appointment. We discussed my history, my current medications, my hobbies, my family background and of course a possible taper of the clonazepam. She has a copy of the Ashton Manual and is familiar with the suggested tapering schedules. She was concerned about the abrupt taper my primary had forced on me against my will. As noted in the Ashton method, the patient should be allowed to set his own schedule for withdrawal from a medication and she said she would give me more time to decide whether I truly wished to lower my current dosage. She agreed that I should be in control the taper, which I have done, and for my piece of mind would continue prescribing the same dose and allow me to cut the pills as I have been doing these past six weeks albeit only slightly. As Dr. Heather Ashton states in her manual: "Nobody should be forced or persuaded to withdraw against his or her will. In fact, people who are unwillingly pushed into withdrawal often do badly...". I am feeling much better now knowing I have control of my body and I am able to concentrate when I read and live my daily life.

[Polar Bear]

Caitrin - I can feel your positivity from your post. What a great appointment you had with the psychiatric nurse.
I too had a (new) GP try to reduce a medication by half and it was only by my asking very relevant questions that she realized that she didn't know as much about RLS as me. But during the course of the conversation I was terrified as to what the outcome might be.
Congratulations, to be in control, but with guidance and support, is to be appreciated.

[Caitrin]

Your experience with your GP is similar to mine. It could be time for me to change to a physician who is a better fit. Of course that may not be possible but I have begun my research. Our journeys are similar and I am consoled to be able to share them as well as find solutions and remain proactive. I feel fortunate to have found a nurse practitioner who is supportive, knowledgeable and caring.
Caitrin

[Valthinking]

Hi, jumping in here because I've been tapering off of Clonazepam. It just dawned on me that maybe, just maybe, that's the reason I've been feeling so rotten. I began tapering from 1.5 mg several months ago. I went very, very slowly and it was awful. The nearest I can come to describing the feeling Clonazepam withdrawal was that it felt like a really bad bout of the flu. When I got to a single .5mg tablet I just stopped. It was too hard.

A little over three weeks ago on March 8th, I went down to .375 mg (3/4 of a .5 mg.) It wasn't great, but when I felt lousy I'd just tell myself it's the withdrawal. Dr. Silber of the Mayo Clinic recommended cutting down half a tab a month. I thought I'd soften the blow and cut down by a quarter of a tablet every two weeks. So six days ago on March 21st, I again dropped the clonazepam dose, and went down to .25mg. This has been a really, really rough week. The RLS starts during the afternoon, what sleep I was getting is increasingly disturbed, I have a constant knot in my stomach that makes it hard to eat. I'm super dizzy all the time. I thought it was a side effect of one of the meds; maybe even the Clonazepam. But maybe that's not it! Could these be withdrawal symptoms? Did I cut back too soon? Any experience with this would be much appreciated!!

[badnights]

Someone who knows more will jump in here, but meantime,

Could these be withdrawal symptoms? Did I cut back too soon?

I would guess yes, and no. (No because there might not be an easier way to do it)

[Valthinking]

Thanks Beth! I just wrote you back on another string (and called you 'aka Polar Bear', not 'aka badnights'. Argh!!) Just wanted to say thanks for jumping in here too. Withdrawal is just so much harder when you do it over and over again. I'll wait to be under a doctor's care next time I drop the dosage down. Pretty sure the next one will be the last one. It would be nice not to have to go through this again!!

Take care of yourself!!

[Stainless]

Valthinking, I know how you feel. I would taper as slow as you have to. My doctor told me the same thing, half the dose each month, but I had major withdrawal. I cut the pills into smaller and smaller pieces and still had lingering affects. It's probably better to titrate to get more exact doses but I finally got off it. Now the big question, what next. After literally trying everything except opioids for a year I ended back on clonazepam.

For the last three weeks I've been taking 1/8 mg of ropinirole on top of the clonazepam with much success. I'm hoping this low dose regiment works for a long time, preferably forever. I would prefer to be off clonazepam but you have to do what you can for quality of life. Best of Luck