Tramadol (mail from Char Shere)

Administrator · Posted: Sat Jan 12, 2008 4:47 pm Post subject: Tramadol (mail from Char Shere)

Mail from Char Shere
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I have suffered from BMS for over two years. I know that Dr. Grushka, who has devoted much of her life to BMS research, has prescribed a combination of clonazepam and Neurontin to help aleviate the constant burning. I have searched for years and am presently being treated at the Orofacial Pain Clinic just outside of Miami, FL.

Dr. Paul Bradley has been using a new approach which has been working for me and I want to share this with others. He has prescribed a low dose of Tramadol (25mg/half of a 50mg pill) every two hours from the time the pain begins (arounf 3PM for me) until bedtime. This medication is not as strong as clonazpam and has no side effects that I have experienced. For some reason, this particular drug seems to target the BMS pain message specifically. I have found that taking a higeer dosage does not make any difference, the effect is the same, so I have gone back to the least possible medication. I am only the third patient that he has treated with this new approach, but all of his trial patients have received a major decrease in burning. I am so happy. Although the pain message has not been eliminated permanently, I\'ll take whatever help I can find. Dr. Bradley has also been applying laser treatments to my tongue. I am in hopes that these will eventually stop the pain altogether, but until then, I AM GETTING RELIEF with no side effects from TRAMADOL.

C. Shere

Leah · Posted: Sun Jan 13, 2008 10:26 pm Post subject:

I just googled this drug. It is a narcotic-like pain reliever. Looks like you have to clear out of your system other drugs that some of us take--like klonopin (klonopin isnt mentioned, but Valium is, and both are benzodiazapemes) and some anti-depressants--before you use it. 300mg a day is the usual dose, so 25mg every 2 hours wouldn't exceed this. Thanks for sharing this new info, Andreas.

I am doing modestly better on Lyrica and topical klonopin, but I wouldn't describe myself as getting MAJOR relief. The topical klonopin (.5mg dissolved into a paste on my tongue and roof of my mouth and held there for 3 minutes, then spit out) helps for an hour (sometimes more, sometimes less) to relieve the pain. No side effects because I spit it out, but I only use it 3 times a day, and that isnt enough.

I plan to forward this new info to my neurologist!

PatM · Joined: 23 Apr 2007 Posts: 5

I have been using Tramadol for about 3 months now .
I had asked my Doctor for a different pain killer because the Paracetamol or Co-codamol that I take when the pain is bad weren't having much effect .
I am continuing to take 50 to 75 mg of Nortriptyline at night . I do find that the Tramadol helps when my mouth really hurts . I just take two 25 mg tabs when I need to , usually in the afternoon and then again in the evening , so the total is about 100 to 400 mg a day . The prescribed dosage is one or two 50mg tablets up to four times a day .
I have had BMS for 9 years now , see also my post - Long term drug use. I am also trying Lipoic Acid 600mg once a day but not with any definite improvement , still getting nasty tastes although the burning seems to have moved around to the front of my mouth .
I think if anyone uses a pain killer tablet then it's worth trying Tramadol , it does work for me .
Regards Pat

PatM · Joined: 23 Apr 2007 Posts: 5

Hello again ,
Just noticed that I put the wrong dose of Tramadol in my last post .
The tablets are definitely 50mg , so I am using 100 to 300 mg per day . The prescribed maximum is 400 mg .
Pat

melanie · Posted: Sat Feb 16, 2008 2:19 am Post subject:

hi guys,

How's everyone doing,

I started taking tramadol also today, i want to see if this really works, i can tolerate clonazepam...

In canada its tramacet, its acetominophen with tramadol in it......

I will give you guys an update on how its doing??

Melanie
_________________
Burning Mouth Syndrome since June 2007.

"Pain is weakness leaving the body – and strength training is the antidote"

Leah · Posted: Thu Feb 28, 2008 3:07 am Post subject: Where is everyone?

How are the Tramadol users doing? And ... where IS everyone????

Kathy · Posted: Thu Feb 28, 2008 4:27 pm Post subject:

Hello Leah,
It's good to see that others are still around and looking in occasionally!
A few months ago, you posted that your tongue was smooth, and you were tested for B12 deficiency.
Do you still have the smooth tongue?
My tongue is definitely smooth and shiny in places on the top near the front and sides (I don't mean the sides where is is normally smooth) and it burns like crazy in these areas, as well as across the top, and the roof of my mouth, lips and cheeks - everywhere, you could say!
All the tests, B12, haemoglobin, folate, came back normal, which I found so depressing - there has just got to be some reason for this.
My dentist is now going to talk directly to my doctor, and he is going to speak to the maxillo-facial specialist I went to early on in my BMS.
I wasn't doing so well a few weeks back - I was really low. I'm sure others feel the same, there seems no way out, you just feel trapped forever in this cycle of pain.
I just hope maybe there will be an answer for us all one day.
Kathy

Leah · Posted: Thu Feb 28, 2008 6:32 pm Post subject:

Kathy,
I think the bad part is that "primary BMS" seems to be without a known cause (though maybe that just means they haven't identified the cause yet). I'm increasingly feeling that the meds I take do nothing and I wonder how I would feel on no meds at all. Right now I have a quarter of a piece of gum in my mouth and I feel pretty much okay. I hate gum, but maybe that's stupid. Maybe I should tell myself the gum IS my medicine and it works. My current thought is that, when I have the time, Im going to try a pain management clinic. I don't think I can really stop the pain but maybe I could learn to deal with it better. Im pretty good about just focusing on work, which I really like, and that helps. But maybe there are other tactics too. I wonder if anyone has tried the pain management route. I might post something with that new title and see if anyone responds. It does seem like the boards are REALLY QUIET these days. I wonder why.
Leah

Leah · Posted: Thu Feb 28, 2008 10:04 pm Post subject:

Kathy: I forgot to answer your question! The smooth tongue was something my dentist noticed. I don't think it's changed, but Im not b12 deficient. I wish I was! Leah

melanie · Posted: Tue Mar 04, 2008 3:10 am Post subject: Re: Where is everyone?

Leah · Posted: Tue Mar 04, 2008 5:08 am Post subject:

Melanie,

How wonderful that you have found something that works for you!

When you say you are one of the lucky ones who has gotten relief from an anti-depressant, do you mean from something else that you take along with the tramadol? If so, what anti-depressant seems to work?

Leah

melanie · Posted: Tue Mar 04, 2008 4:02 pm Post subject:

Hi,

I take EFFEXOR, for almost a year now, when i started taking it, on a scale of 10 i went from a 10 to a 3-4 and now i am 2-3....

I dont take anything else except, tramadol now... I tried clonazepam its not for me...............

Seems to work for me..........
_________________
Burning Mouth Syndrome since June 2007.

"Pain is weakness leaving the body – and strength training is the antidote"

ilsa · Joined: 29 Jun 2008 Posts: 2

Leah · Posted: Fri Jul 11, 2008 1:39 am Post subject:

Dear Ilsa,

It sounds like you have had quite an ordeal! It's fortunate that you've finally found someone who seems smart and knowledgeable. Please do keep all of us posted on tramadol and also on the laser and other treatments. We'll be eager to hear how everything works.

By the way, where is Dr Bradley located?

Best wishes!
Leah

ilsa · Joined: 29 Jun 2008 Posts: 2