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Posted by: jane from the UK ® 05/31/2014, 05:05:15 |
I have started to take Clonazepam at half of a .5mg tablet morning and before sleep. I have not noticed any benefit in facial spasms so far, it just made me feel very sleepy when I took it in the morning. Does it take a few days before it starts working and how much benefit do people get from it at what dose? |
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Posted by: mika in japan ® 05/31/2014, 05:55:39 |
I've been taking half of 0.5mg every morning and before sleep for 4days so far. Before that, I was taking a tablet of 0.5mg before sleep for 5days. It is because the doctor prescribed this amount due to my sensitiveness to drugs.
In addition, I am rather small comparing to others.(height 150cm, weight 45kg) As you mentioned, it is also hard for me to get up in the morning but I am hoping that my body will get used to the drug.
Modified by mika in japan at Sat, May 31, 2014, 06:01:24 |
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Posted by: lisao ® 05/31/2014, 10:06:27 |
FYI, someone on the "Living With Blepharospasm" facebook page just posted that she started taking 500 mcg (which is .5 mg I believe)of clonazepam 3 times a day about 3 weeks ago, and she is now spasm-free. (She does not use botox.) I don't know how soon she stopped having spasms, but I got the feeling it happened recently, in which case it took 2-3 weeks ...
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Posted by: jane from the UK ® 05/31/2014, 11:52:35 |
Thanks Lisa, I must join the facebook group. With results like that you wonder why we bother with botox which has never left me spasm free! |
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Posted by: lisao ® 06/01/2014, 10:56:57 |
I have only heard of one other person getting total relief from clonazepam. She used it instead of botox because her insurance wouldn't pay for botox. She was spasm free also. I wonder if it works differently if taken along with botox than just on its own?
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Posted by: jane from the UK ® 06/01/2014, 12:43:27 |
Yes maybe it does. I suppose I could do an experiment and wait longer until going for my next jabs and see what happens. I will let you know. jane |
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Posted by: Shirley Barr in New Mexico ® 06/01/2014, 15:04:03 |
Klonopin (clonazepam)is one of the long acting Benzodiazepines. It is not a medication that will have to build up in your system over days or weeks, in order for it to work. Most people that get relief from their BEB symptoms from it, will do so fairly quickly....like within an hour or two. It can help with Blepharospasm symptoms to varying degrees. Some people don't get any benefit while others find it quite remarkable. At times, it is effective or helpful initially but as time goes on and our bodies get used to it, it may stop working or doesn't work as well. Dosage will vary from person to person but many find that a small dosage of 0.25mg to 0.5mg, one to four times a day is all that is needed....while others take a much larger dose. Side-effects generally increase as the dosage is increased though. Some doctors recommend taking only one dose a day (at bedtime) to counter any sleepiness from the medication. The Benzodiazepines can be helpful for some of us with Blepharospasm but generally "a help" is all that it is and will not make your symptoms totally go away. Since BEB symptoms vary widely as to whether they are mild or severe...it's hard to say how much it will actually help any individual and for how long it will help or if it will help at all. I used to take it and I did feel that it was somewhat helpful but over months/years time, I didn't feel like I was getting any benefit from it. It took me months to taper off of a very low dosage of it. For me, the short term memory side-effects and not feeling like it was helping without increasing the dosage over time and the difficulty of getting off of it....simply was not worth taking it, on a day to day basis. Others report that the same low dosage that they began with has continued to be helpful with their symptoms. I've provided a link to a Benzodiazepine equivalence table (there are numerous ones online if you google it). The table might be helpful for some of you that are familiar with this class of drugs....Klonopin, Valium, Ativan, Zanax, Librium and Tranxene, to name a few. Some comparisons are... 10mg of Valium is equal to 0.5mg of Klonopin or 1mg of Ativan or 0.5mg of Zanax or 25mg of Librium or 15mg of Tranxene. Shirley in New Mexico
Related link: http://www.benzo.org.uk/bzequiv.htm |
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Posted by: lisao ® 06/02/2014, 08:53:05 |
Hi Shirley, Thanks for the information and links! In the case of the woman on the facebook page, it turns out her improvement was gradual. Her symptoms got slightly better the first week - but her spasms did not stop altogether till the second week. So I guess this is another instance of how we all react differently to meds.
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Posted by: Shirley Barr in New Mexico ® 06/02/2014, 10:13:13 |
The benzodiazepines do build up in your system and several of them have a very long half life. Their effectiveness might improve over a period of time while you build up to whatever effective dose, your doctor has in mind for you. My comment about, "you should know pretty quickly if this is going to be helpful for you or not" was one of a general nature. Most people that take an adequate dose for them...the one pill....can tell if their symptoms improve or not within the time that it takes for that drug to reach it's peak level for that dose. I doubt that that is the case 100% of the time but is generally what happens. The benzodiazepines are muscle relaxers/tranquilizers and go to work pretty quickly. I would think that she probably noticed some improvement in her symptoms right away but these things just improved over the course of a couple of weeks as she continued the Klonopin. I'm happy that she got such total relief and hope that it continues for her. Shirley in New Mexico
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Posted by: In Wisconsin ® 06/02/2014, 13:01:13 |
The half life for clonazepam is up to 60 hours. It takes 5 half lives to reach "steady state" blood level, so the level continues to build for up to 12 days at a given dose. Yes, the first dose may have an effect, but those effects do build over the first 12 days. Side effects such as sedation/cognitive slowing can also build over this time. The problem with these meds is that tolerance builds, and they eventually become ineffective at the original dose. Doses must escalate to prevent a "withdrawal" symptom type situation. They may even cause worsening of the underlying condition over prolonged use. Longer term use has been associated with memory issues. Then weaning off them is difficult and must be done slowly due to withdrawal anxiety, insomnia, photophobia, hypertension and other symptoms because of the the "up-regulation" of brain receptors. Benzodiazepines have been implicated as a cause of drug-induced blepharospasm as well. Twelve cases of drug-induced blepharospam improved within two months of cessation of the benzodiapine: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3132861/ All things to consider if anyone is considering using this powerful medication. It may be very helpful in the short term......but BEB is not typically a short term condition. Clonazepam is very helpful in weaning off other shorter acting benzodiazepines like lorazepam and xanax (alprazolam). Its much easier to taper clonazepam than to taper off shorter acting benzos, and may improve drug-induced BEB caused by short acting benzodiazepines. (I think that may be why the woman from Japan was put on it- as a way to get off her short acting benzos that may have induced her condition). I wish there were more actual studies instead of just anecdotes regarding the use of benzodiazepines in blepharospasm - such as effectiveness, long term outcomes, long term side effects, and especially disease progression. Jill Note: never stop taking a benzodiazepine without discussing a tapering plan with your doctor. Stopping suddenly can cause severe high blood pressure and other dangerous effects.
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Posted by: Shirley Barr in New Mexico ® 06/02/2014, 15:33:37 |
Jill, thanks for the additional information on Benzodiazepines. Over the past 14-15 years that I've been on this board, I've heard some real horror stories regarding side-effects of the Benzos and the difficulty in stopping them when people decide to do so. My personal feeling is that many people just stay on them, when they start having the withdrawal symptoms of worsening symptoms and increased anxiety. It's not generally a quick and easy fix for Primary Blepharospasm. Wanting that pill to make things better is definitely understandable and I've certainly done it. People just need to understand the long term implications that might add to their difficulties further along. I do know that the physicians that participate in the Blepharospasm conferences, do say that the medications can be a "help" but are not a cure and that most of the time, they lose their effectiveness over time. One doctor told us that "everything works but nothing keeps on working"...as far as medications go. Thanks for your input Jill! You're an asset to our board! Shirley in New Mexico |
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Posted by: lisao ® 06/02/2014, 15:58:41 |
Jill, thanks so much! It's interesting to hear that it's easier to be weaned off clonazepam than off some other benzos. My doctor told me she would much rather prescribe me clonazepam than alprazolam - that must be why. I have talked to at least a couple of people who have taken clonazepam for quite awhile without getting a tolerance problem (though who knows, maybe they HAVE developed a tolerance but don't realize it because their brains have been retrained not to spasm due to the long time not spasming while taking clonazepam?). Also, I've talked to a couple of people who were able to decrease their dose/frequency without too much difficulty - probably because they did it very slowly, as you advise. It's good to be reminded about that potential serious problem though. Of course, the things I have heard about are just anecdotes, so it's hard to draw any big conclusions from them. The two things I am left wondering about are:
Modified by lisao at Mon, Jun 02, 2014, 16:01:52 |
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Posted by: In Wisconsin ® 06/02/2014, 19:29:18 |
Tolerance to benzodiazepines is highly individual from what I understand - some people may be on it for years before it develops, while some may be weeks until it develops. Shorter acting benzos (especially xanax) often cause "rebound" worsening of symptoms when they wear off, and lead escalation of dosing quicker than the longer acting benzos. Yes, you are right that the key to decreasing doses after being on it for more than a few weeks is to go slowly. And the longer someone has been on it, the slower this needs to be to avoid the withdrawal symptom problem and allow the brain to "reset" its receptors. For people who have been on clonazepam or valium for months to years, many must decrease no more than 10% of the dose per week, sometimes less, to avoid withdrawal symptoms.The Ashton Manual gives a detailed withdrawal schedule. Again, this is very individual. Regarding a potential role of clonazepam in neuroplasticity training - it is an interesting question. I do think trying other ways to increase GABA in the brain (decrease stress, etc) are more likely to have lasting benefit without the risk of receptor "up-regulation" Could clonazepam give a jump start to this process? perhaps. I think the key would be seeing if a 2 week trial made a significant difference, and then tapering before tolerance develops. My worry, though, is that it may just add another layer to the problem if some one stayed on it too long and developed increasing anxiety/spasms necessitating increasing doses and a vicious cycle, making a bad disease worse. I guess the biggest question in neuroplasticity training is does dampening the faulty circuit with clonazepam extinguish the circuit? Or does the "stress" relief it offers help with neuroplasticity training? It seems many have tried clonazepam for all kids of dystonias, but I've only heard of a few reports of remission. More often it offers a minor symptomatic relief - for some a significant amount, but rarely remission. But, then again, maybe there are more cases we haven't heard of? Regarding the question of "might clonazepam have a different effect in bleph if not using botox": It should have the same effect on GABA receptors in the brain whether using botox or not. The difference would be that those on botox may not appreciate the positive effects of clonazepam as much as someone not using botox. I'd be interested to hear Dr. Farias response to the neuroplasticity question. Jill
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Posted by: Judy in WA ® 06/29/2014, 10:06:11 |
Were it not for Clonazepam, I would be a shaking, quaking shambles ... bodywide.
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Posted by: Afisher ® 06/01/2014, 17:01:32 |
I have taken clonazepam most of the 5-6 years I've had BEB...for me it is a relaxant that helps me to feel more comfortable after a full day of eye usage. I usually take it only at night and it helps me to get a good night of sleep which helps me function the next day. I push myself through the drowsy morning thing, I'm drowsy every morning no matter what, with or without any drugs. I think it is a matter of preference and comfort. Andrea |
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Posted by: Susi ® 06/01/2014, 18:30:14 |
I know I have shared this before but just want to make the point that taking lorazepam (Ativan) .5 mg once a day gives me, on most days, a good long chunk of my day where I am pretty much spasm free. I still have some triggers (talking on the phone, too much time on the computer, getting over tired)but my eyes feel quite comfortable for many hours. I find that I can drive when I am taking it and feel more alert because my eye spasms do not interfere with my concentration or vision.
I recently discovered that the manufacturing company can influence the effectiveness of a generic drug when my pharmacy switched companies. After two weeks of more and stronger spasms and some other disturbing side effects such as nightmares, waking up feeling anxious and very depressed. The positive effects were not reliable. I talked to my pharmacist and he ordered the meds from the original company. Now I am back to what is "normal" for me while taking lorazepam. My point here is that it might be possible, if a generic drug doesn't work for you, maybe getting it from another manufacturer could make a difference. I haven't tried taking the lorazepam more than once a day, usually I take it around 9 or 10 in the morning. It doesn't put me to sleep. It might be interesting to see if the hours without spasms would increase if I took it twice a day. But as I don't feel the need to take it, I don't want to get used to taking more than I really need and then have to wean myself off of the extra dose. I am satisfied with things the way they are for now and don't want to make a change in case it loses it's effectiveness.
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Posted by: Judy in WA ® 06/03/2014, 19:38:04 |
Hello all! I've used Clonazepam for some time (.5mg. up to five times a day)and for me it is a life (or a better quality of life)changer. Going out eat often produces body wide spasms for me. Taking 2
Judy in WA Modified by Judy in WA at Tue, Jun 03, 2014, 19:40:29 |
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Posted by: lisao ® 06/28/2014, 08:15:15 |
Judy, do you get botox as well? (I keep wondering if it works better for people who don't use botox.) Also, how long have you been taking clonazepam? Have you noticed you had to increase the dose over time? |
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Posted by: Judy in WA ® 06/29/2014, 10:11:58 |
Yes, I've gotten Botox for most of my run at this disorder. RE: Clonazepam, I will take extra only if I am at the 'everything shakes' period. ~ Judy in WA |
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Posted by: ColleenA ® 06/25/2014, 20:06:30 |
I took Clonazepam for two years, along with getting botox injections every 10 weeks. The side effects from the Clonazepam for me were too much and this past spring I tapered off, quite successfully. Finished taking my last dose 2 weeks ago. I have had some headaches and intermittent bouts of nausea, but nothing else. The side effects for me outweighed what small benefit I was getting from the med - I think it complimented getting the botox but wasn't the best thing for me. Good luck !!!! |
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