Cefaly and/or Clonazepam
Looking to read others' experiences and stories regarding these treatments. I'm due Cefaly in the mail soon. I tried it at my neurologist's office and liked the sensation. I am hopeful it will be a helpful tool in my migraine kit. The neurologist also recommended a change to my Clonazepam use. I was using it as needed for sedative effect during migraine or preventative if I knew I was going to a high trigger environment (as other doctors had prescribed it). The neurologist diagnosed me with REM behavior disorder and periodic limb movement disorder (similar disorders both causing fragmented sleep). So she has me taking the clonazepam every evening. It took some incremental steps up in dosing to find a therapeutic level. And the dose is still low enough to allow for occasional as-needed use for anxiety or agitation (the other conditions I was prescribed it). Clonazepam has long been the top-recommended drug for rbd and plmd, yet this is the first it was recommended to me. The neurologist is well convinced that the life long sleep disturbance is exacerbating if not causing both bipolar and migraine symptoms. I am inclined to agree. I have spoken to every healthcare provider I have ever seen about my sleep and have been ignored, given ineffective advice, or prescribed sleep medications with terrible side effects. I keep excellent sleep hygiene and drink less than one cup of caffeinated coffee or tea per day. I always fell asleep readily, but slept restlessly, dreamed vividly, acted upon my dreams, woke frequently, and disturbed any bed or roommates. I never slept longer than two consecutive hours ever. Yet in 40+ years this is the first health provider to say "let's get your sleep fixed" I have tolerated clonazepam well for over five years without developing tolerance or addiction. And after dialing in the dose, I slept for seven hours! I woke refreshed. And yet disoriented as I expected only two hours to have passed. I am so self-identified as a "poor sleeper" that sleeping well felt odd. Lol Just wondering what others may have experienced with either of these therapies. Thanks
Hi glassmind,
Good to hear from you and thank you for the update! I too have plmd and restless leg, both can clearly interrupt sleep which can then trigger a migraine attack - UGH!
I use tizanadine and cannabis tincture and Cefaly at night to help with sleep and most nights it works. Cefaly puts most people to sleep, it does make me a bit sleepy.
Let me know what you think about the device!
Nancy
Let us knoThanks. I was mistaken in reporting my diagnosis. My neurologist has diagnosed Restless Leg Syndrome and R.e.m Behavior Disorder (not periodic limb movement disorder, though they all fall under parasomnias and cause interrupted sleep).
Anyway...
Thanks for the feedback.
I am glad you are finding some relief with tizanadine and cbd and cefaly.
Do you have the headband version or the magnetic one? Do you use cefaly as an abortive also?
As for my update. Due to a heart condition I must avoid prescription strength or very strong muscle relaxants (learned the hard way).
Prior to dx I found some relief for RLS by exercising 30 minutes before sleep and by keeping a very warm sleeping environment. The warmth seemed to help little with RBD though.
I've been using cefaly daily at midday as a preventative. I tried twice to use it during a migraine and found it to be intolerable. Also, as I have the magnetic version I must remain quite still. I tried using it at night and if I fell asleep and moved, it would cause a painful spike in the electrical signal. So midday it is for me.
My dr and I have been trying various dosages and timings for clonozapam (a benzodiazapiene). It does work exceedingly well for me if taken a few hours before bedtime to prevent RBD and waking. However, at a therapuetic dosage, I struggle the first 5-6 hours of the next day to feel alert or to get my body physically moving.
At lower dosages, earlier in the evening or staggered, I get partial relief from RBD, and even less relief for frequent waking.
I also started taking iron and magnesium (which does relax muscles) every evening. Both are supposed to promote sleep and relieve RLS, though excessive iron can worsen RBD. Yeah.
In the two weeks of preventative cefaly use and supplements, I have had two migraines and the last five consecutive days have been migraine free. I was experiencing an average of seven or more migraines every two weeks. So something is working.
