Wm, that is so kind of you! Thanks for that. I have so appreciated your input as well and am grateful for your presence here. I wish none of us had to deal with this, but I am constantly amazed by the efforts we all make to look out for each other even while we battle this monster ourselves. It’s quite uplifting and is a huge part of ending the isolation of dealing with chronic pain.
When I wrote my last reply, the darned iPad kept losing my text so I had to retype it four times at least. I know that I referred to the Atypical group in one of my earlier versions, but it somehow didn’t make the final cut. Sorry about that. I’m glad that you discovered it on your own.
It is very astute of you to be so aware of how particular medications affect you. To have benzos as your best friend must be both a blessing and a curse. I am hopeful for this new routine you have set in motion. Please be sure to keep us posted on how it is working out.
if you don't mind me being so forward and transparent? Why do benzo's have such a bad name? Tbh ive never even heard of them myself. I've seen many neuro's over the past 4 years and the only medications I've ever heard them speak badly of is opiates, which I've been on for almost a year now. Where is their place in regards to opiates, as in stronger weaker etc... Or can't this be compared as they are a completely different kettle of fish. I've noticed the nasty side effects in the thread, is that why there's a bad name ?
They get a bad rep because people use them recreationally and develop addictions. I'm sure you've seen movies or something where people take Valium or something. They are physically addicting too. Same deal as with pain meds basically.
It's a relevant question, so feel free to be as forward and transparent as you like. :)
I concur with Crystal's assessment.
In terms of physical addiction, from my point of view, if a medication that my doctor has prescribed is beneficial, then my becoming physically dependent on it isn't a deal breaker. Others may have different thoughts on this, of course. I do think that concerns about taking any medication long term are valid and that each person needs to decide what is right for them based on their medical history and comfort level with any risks involved. It's all about finding a balance between the side effects/risks and the improved quality of life that medication can (hopefully) provide. It's a challenge sometimes, I know.
FOR SOME people...tolerance to benzo's can rapidly increase, requiring a higher and higher dosage.
Then at some point, for some people, the medication is no longer effective. Then, if one should stop taking the medication, even on a gradual basis, withdrawal symptoms become apparent. Coping with life can them become very problematic. Solutions become more part of the problem. If you should ever see those celebrity rehab programs many patients are coping with abuse of benzo medication. Some doctors are going to very cautious; others may prescribe too liberally. If a person is motivated, a doctor can be found to prescribe almost anything. That's my take. A ton of information can be found on the web. Personally, I am not concerned with addiction, per se. But, I am concerned with facing the music if the medication should stop being effective, the subsequent withdrawal, and whatever side effects that could damage vital organs....and, the impact on life competency skills.
Re my new use of clonazepam..../.25 mg at night....the next days, so far, are not very good. I am quite tired. But, some tweaking remains in order. My thyroid dosage may be too high and this could be interfering with sleep. So, it's a work in process; so far, no magic.
Wm, thanks for sharing that perspective. It’s good for all of us to be as well informed as possible so that we can watch out for any indication of negative effects so that we can take steps to minimize them (with our doctor’s guidance, of course).
I am sorry to hear that you are so fatigued the days after you take the nighttime dose of clonazepam. Being well rested is such an important part of pain control, healing and feeling better overall. It’s especially annoying since you introduced the clonazepam in an attempt to make things better, not more exausting. I hope that you are able to tweak the meds so that this works for you or that it will lead you to an even better solution.
This is a recent reply...I prefer not to name the source since I have not asked for permission to quote but I wanted to share as soon as possible. See below.
Personally, I do like lorazepam(2mg). I will continue to take it every other night and then use clonazepam/low dose of .25 to .5mg on the other nights. As you and others state, medication response can be unqiue to each of us, so it's a matter of trial and error. Benzo's have a very bad reputation for abuse and escalating tolerance. I wouldn't underestimate the risk. On the other hand, it may be unfortunate that the media has scared physicians from encouraging us to use some meds, responsibly.
Fwiw, after almost five years of exploring sources of help for atypical tn, I have a lot of respect for Drs. G-R, Okeson, and another oral pain specialist...Henry Gremillion. I believe all three have strong developed clinics at about the same time.
I assume that those posting on this particular thread share a history of having constant dental like pain that is neuropathic? It would be nice to have a community of the atypical category. Is there one? If so, I'd find it easier to check in from time to time. Personally, I don't want to over focus on pain and I find that web searching can be counter productive...at least, for me.
Actually there is more evidence in the literature supporting the use of clonazepam then lorazepam for neuropathic pain conditions. It can be taken before sleep which can assist in sleep.
Chris, forgive me if I have answered in the wrong spot. In regard to long term use of clonazepam. I took 1 mlg. a nite for 6 and ahalf years (for a sleep aide and anxiety) I was in remission for atn and did not realize clonazapam was used for tn at the time. I now believe it kept me pain free all those years. I never increased the dosage and was fine. In February, I decided I wanted to try to sleep on my own and slowly give up on the pill, I weaned myself off of the clonazapam and then started having facial pain, vertigo, muscle spasms etc. and eventually the atn returned full force the end of May. I have been researching for weeks, and can only conclude I made a huge mistake. I am on topamax (50 mlg) presently and will see the doctor again next week. I am in pain and here we go again. The only problem with all of these meds is having to drive and work. I know with clonazapam, it puts me to sleep. Guess we shall see.
fwiw...I kept trying to use clonazepam but it continued to be more harmful than helpful. Poor quality sleep followed by depression and fatigue. For reasons that I do not understand there appears to be pain specialists that have divided opinion on this drug, not to mention the apparent individual differences in response. In my direct experience, three extremely well credentialed specialists advised against it while another three apparently support consideration of using it.
Lindylu said:
Chris, forgive me if I have answered in the wrong spot. In regard to long term use of clonazepam. I took 1 mlg. a nite for 6 and ahalf years (for a sleep aide and anxiety) I was in remission for atn and did not realize clonazapam was used for tn at the time. I now believe it kept me pain free all those years. I never increased the dosage and was fine. In February, I decided I wanted to try to sleep on my own and slowly give up on the pill, I weaned myself off of the clonazapam and then started having facial pain, vertigo, muscle spasms etc. and eventually the atn returned full force the end of May. I have been researching for weeks, and can only conclude I made a huge mistake. I am on topamax (50 mlg) presently and will see the doctor again next week. I am in pain and here we go again. The only problem with all of these meds is having to drive and work. I know with clonazapam, it puts me to sleep. Guess we shall see.
Lindylu, your reply came through in the right place, so no worries. Thank you so much for sharing your experience with me. I am very glad to hear that you didn't need to increase your dosage over time. That is really helpful to me. I am sorry, though, to hear that your pain levels have come back with a vengeance. That is awful and must be so frustrating. I don't think you made a mistake in going off of the clonazepam; none of us can predict the future and you weren't to know this would happen. Perhaps this will lead to your finding a medication that works well without making you sleepy. I will keep my fingers crossed for you that this happens as soon as possible.
Wm, I am so sorry that the clonazepam did you more harm than good. I was really hoping for a better outcome for you. I still think your idea to alternate the two meds was a sound one and that it was worth a shot, but I do wish that it would have worked out the way that you wanted it to. It does seem like people have such different responses to various medications and there isn't any way to know until you try it for yourself and see how you react to it. I wish there was a better way to figure this out rather than trial and error. Have you found anything else in the meantime that offers some relief? I certainly hope so. You don't deserve to be in such pain.
Did either of you find withdrawing from the clonazepam particularly difficult?
Chris, just wanted to tell you that I slowly withdrew from clonazepam - started taking half a pill for a few weeks, then half of that. I took a melatonin pill to help me sleep as well. It was not as bad as I expected. Of course, after a month or so the unexpected facial spasms started coming and I did not associate it with tn or the pills.
I go to the doctor this coming week and will discuss all of this then. Thanks for listening and will write again. Take care as well to all, Linda
Linda, it has been my plan to taper off very slowly as well (under my doctor's supervision, of course) if/when I ever need to stop taking this med. I will certainly keep melatonin in mind should I need to do this. Thanks for that.
I will be sending you good thoughts and hopes that your doctor's appointment goes well. Hopefully, they will be able to come up with a way to alleviate the pain without as many side effects. I need to work as well, so I understand where you are coming from. Please let us know how it goes.