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Old 09-02-2008, 02:34 PM   #1
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Nenu HB User
Clonazepam. BMS relief attempt again.

So I met with my GP today, and explained that anxiety runs in my family (father and his mother both affected). I told her that my BMS (burning mouth syndrome) flares up drastically where anxiety is concerned. Some days I can go without barely any burning in the mouth (when I'm calm and laid back), but other days are just unbearable.

We discussed Topiramate, which she does not think would be a good option, since I have had problems with anti convulsants before. My neuro had marked a suggestion for Lyrica, to which she said she wouldn't prescribe it because she wasn't too pleased with the results she's seen on it. I think perhaps it was Lyrica too that she mentioned she would not prescribe due to me being asthmatic and having low blood pressure (which she also added my Amitriptyline I take is probably adding to, lowering the blood pressure that is).

So, I asked her about Clonazepam. She was a bit reluctant, because it is habit forming, but due to my history of anxiety in the family and knowing my BMS pattern, she agreed that it may be beneficial to try this along with the Amitriptyline (which at 20mg at nighttime does seem to be easing the pain of BMS a little bit).

So I just took .25mg of Clonazepam 30 min. ago or so. It's making me a bit sleepy! Luckily I'm just bumming around the house and don't have to do anything today .

I have hopes that this may be the ticket for easing the BMS pain I have. It's like a wildfire today (stress from going to the doctor... always raises my stress level). I know others here have mentioned they take Clonazepam for various reasons. What are your experiences with it? My GP recommended taking 1/2 to 1 tablet up to 3 times daily (each tablet is .5mg, so I cut the first in half to take .25mg). So far it's just making me feel sleepy as I said. Maybe I'll have a nice sleep tonight
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Old 09-02-2008, 03:51 PM   #2
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Re: Clonazepam. BMS relief attempt again.

Hi Nenu! I used to take Xanax (same family) for anxiety, but now I take Klonopin for that and other reasons. It does make me tired, but not as much as Xanax did. Klonopin seems to help with my spasiticity, more so than muscle relaxers, and it is great for helping me sleep when I can't. For me at least, it hasn't been habit forming. Klonopin does have a longer half-life than many of the benzodiazepines, so that makes it a little less addictive.

For some reason, it seems to help with my neurological symptoms, like the itching and phantom pains, and there's no reason why, but I'll take it! It's not a miracle drug for these things, but it definitely helps. I hope it helps with your mouth; it's at least worth a try. Let us know how it helps!
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April
dx 9/07
Avonex started 11/07,
Stopped 4/10 due to no insurance.

 
Old 09-02-2008, 04:26 PM   #3
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Re: Clonazepam. BMS relief attempt again.

I was hoping you'd write April, because I was thinking of you sweetie when I posted about Clonazepam.

It IS helping. Already. Still have some pain, but it's so dulled it's a non issue right now. And I don't have a raging headache! My GP suggested too that the head pains I am getting are more than likely MS, but she did think that anxiety could be a contributing factor.

I was shocked at the price of this stuff. My insurance covered the entirety of it, minus 1 cent the pharmacy didn't charge me. Can you believe that?

How much do you take of this stuff when you take a dose? I was Rx'ed .25mg to .5mg 3 times daily as needed.
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Old 09-02-2008, 04:38 PM   #4
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Re: Clonazepam. BMS relief attempt again.

I'm so glad it's helping you already! I wonder if it's the reason I've been getting less headaches too.

My pills are .5 mg too. I'm supposed to take three a day, all spaced out. But because it makes me tired during the day even if I take Amantadine, I only take a half on workdays, one on weekends, and one to bed on most nights. It has helped a lot with the abdominal spasms I have at night, and it helps me sleep through my Avonex side effects, or what's left of them. Klonopin has helped my sensory symptoms as well. My doc wanted me to start Neurontin but I don't want another drug, especially another that will make me tired.

I am pretty surprised at how many benefits this drug has that I wasn't expecting. The only drawback is the fatigue, but taking a small dose and getting used to it will help. I'm so glad it's helping your mouth!!!
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April
dx 9/07
Avonex started 11/07,
Stopped 4/10 due to no insurance.

 
Old 09-02-2008, 04:56 PM   #5
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Re: Clonazepam. BMS relief attempt again.

Well with the amount of stress/anxiety from today (my colposcopy report came back showing many cell changes, which means on to laser surgery I go) I should have a raging wildfire in my mouth, as well as a raging headache. I have neither as I type this. The mouth's nearly pain free from what I would normally be feeling right now.

I feel like a space cadet, but I'm coherent. I'm sure I'll adjust to this after a while.

I'm surprised she doesn't want me to continue on .25mg 3 times a day. Like you mention, it can help in other areas as well. Maybe she'll hear my success on it (I'll give it a couple weeks and see how I do) and rx it full time. Never know.

She was a bit concerned that my blood pressure was so low. I told her it's been that way for a long time, before the meds. She was happy to hear I'm eating a low fat red meat free diet though, and I have lost weight since I last saw her.

I laughed when she read my neurologist's report he sent to her after seeing me on the 18th, "She tipped the scales at 124!!!!" (exactly what he wrote, exclamation points included lol).
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Old 09-03-2008, 04:56 PM   #6
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Re: Clonazepam. BMS relief attempt again.

I slept THE best sleep I have had in memory last night. I took .25mg of Clonazepam about 1 hour before bed, and I must have not tossed or turned all night, because when I woke up, the bedding was undisturbed other than the 1 small spot where it appeared I had laid stationary all night long.

I felt refreshed and rested. I got up, went out and did errands, came home and cleaned up, took my garbage out, swept the floors in my kitchen and bathroom, made some phone calls...

And went to the drug store, picked up my 5th box of Copaxone, and I was shocked to find the cost out of pocket was nearly 70$ less than I'm used to paying. It appears that my work insurance for medical has changed somehow, and is now paying more than it was previously for medications. No wonder my Clonazepam was $0 when I picked it up. Maybe it's one that my work insurance now covers outright?! It used to be a flat 80%... which would mean my $12.xx Clonazepam SHOULD have cost at least $1. But it didn't.

In any event, BMS is pretty much non existent today, so I have not taken any Clonazepam. If it gets bad later on this evening, then I'll consider taking .25mg of it, but I will refrain from taking it otherwise if the BMS is not kicked up.

Oh, and I'm headache free again today, and overall my MS symptoms that linger a bit daily (tinglies, pins and needles, which affects head/hands/legs) are non existent as well.
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Old 09-03-2008, 06:44 PM   #7
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Re: Clonazepam. BMS relief attempt again.

Great news about your BMS and lets hope you continue symptom free for many more days to come
Michele

 
Old 09-03-2008, 07:07 PM   #8
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Re: Clonazepam. BMS relief attempt again.

Quote:
Originally Posted by zadie View Post
Great news about your BMS and lets hope you continue symptom free for many more days to come
Michele
Thanks Michele I too hope it calms down from what it has been in the past.
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Old 09-04-2008, 02:05 PM   #9
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Re: Clonazepam. BMS relief attempt again.

I'm so glad Nenu! I wonder why Klonopin has so many good effects when other benzodiazepines don't. I too sleep like a baby when I take it. When I was working at my last job I barely slept at all, and I woke up almost every hour. I used to view my bed as a war zone, but no more. Plus, I don't feel groggy when I wake up.

When the insomnia started, before klonopin, my doc gave me Remeron, an anti-psychotic that helps you sleep. I waited for a weekend, took a half of one, fell asleep in minutes. But it was horrible! I was a zombie the next day. I threw that stuff out.

I hope this helps you forever. I can't imagine how horrible a burning mouth would be, and I'm so glad you have found relief!
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dx 9/07
Avonex started 11/07,
Stopped 4/10 due to no insurance.

 
Old 09-04-2008, 02:45 PM   #10
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Re: Clonazepam. BMS relief attempt again.

Well, the Amitriptyline I was taking, when it was increased to 20mg began to help quite a lot. Then I had the stress of the pap test situation to deal with on Tuesday when I saw my doctor, which resulted in my mouth being worse than it had been in a while. When I took the Clonazepam, it seemed to be fast acting and definitely took the edge off the burning mouth. It was tolerable.

I also like that it doesn't seem to increase your appetite what so ever. I don't feel hungry after eating a regular meal (I can't say the same of Oxycodone (Percocet) or Neurontin).
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Old 09-04-2008, 03:49 PM   #11
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Re: Clonazepam. BMS relief attempt again.

It doesn't affect my appetite either, but sometimes it gives me a very slight case of heartburn. I'm not sure why; it only happens once in awhile. I take Percoset occasionally, but I get the opposite effect. It decreases my normally voracious appetite so much that I'll go hours without eating before I remember to. That's not a side effect I can afford. I saw my PCP today and weighed in at 98 pounds. He says it's normal because I have a small frame and I'm short, but I would feel a lot better about myself if I could gain at least 10 pounds.

I'm still sitting on my script for Neurontin. My itching is going away and the Klonopin helps a lot with my sensory symptoms.
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dx 9/07
Avonex started 11/07,
Stopped 4/10 due to no insurance.

 
Old 09-04-2008, 04:02 PM   #12
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Re: Clonazepam. BMS relief attempt again.

Quote:
Originally Posted by april1848 View Post
and the Klonopin helps a lot with my sensory symptoms.
That's just it!! You said it April. The majority of my symptoms are sensory. I think that's why Clonazepam is helping me to such a degree.

I'm very excited about this drug and the results after only 2 days. Not at all my experience with Neurontin. Don't let my experience discourage you from trying. MS is so unique, but so is what drugs work for any person with MS as we know. It's a bunch of trial and error work and patience.

I now know that me + anti convulsants = not a good time. I've failed on 2 (Carbamazepine, Neurontin) due to side effects and little results. My GP has basically said, "Ok, we'll avoid the anti convulsants from now on".
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Old 09-04-2008, 04:35 PM   #13
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Re: Clonazepam. BMS relief attempt again.

Hi Nenu

I have been on .5mg clonezapam for a year now and agree that it is a great relief for sensory symptoms. I am glad to read that your BMS seems to be more under control. I take clonezapam for spasms and it also helps me sleep at night. I have also found that it calms my burning and itching skin.
I tried baclofen briefly but it did more harm then good.

Here is to continued relief
Tasia

 
Old 09-04-2008, 07:34 PM   #14
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Nenu HB User
Re: Clonazepam. BMS relief attempt again.

Quote:
Originally Posted by Tasia W View Post
I have been on .5mg clonezapam for a year now and agree that it is a great relief for sensory symptoms.
Hey Tasia! Thank you for your feedback! Much appreciated

Do you only take .5 mg of clonazepam 1 time daily? Day or night? Or do you take it throughout the day at .5 mg doses?
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Old 09-04-2008, 10:02 PM   #15
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Re: Clonazepam. BMS relief attempt again.

Hi Nenu
I take it only at night time. Last March my neuro suggested that I start taking a half of one during the day du to an increase in sx'd however it just made me too tired.

The nice thing about taking clonezapam is that I wake up and do not feel like I have been heavily sedated. When I took Baclofen it was awful..I became very emotional...just didn't work for me.

Clonezapam can be habit forming I know but the pharmacist assured me that as long as I take it as perscribed i should not have any problems. Lets see what happens when I run out
Take care Nenu!
Tasia

 
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