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06-30-2009, 11:20 PM
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Magnate
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I've been taking Cesamet for 4 weeks now. I begin week 5 tomorrow, which is my top level dose that I had to work up to.
I'm surprised with this medication for a number of reasons. One is that the body adjusts to it quickly, unlike my experience with other 'narcotics' (which left me feeling stupid no matter what). After the initial 2 weeks, I wasn't getting the euphoric feeling increasing the dose. After 2 days at the next level of medication, it evens out and besides feeling a bit dopey/drowsy, otherwise very tolerable side effects. Oh that's the thing. Other than the bit dopey feeling, no side effects. Nadda, ziltch. And I can take it with other medications with apparently very little interaction (there are some, but I also take Clonazepam and I'm actually taking less Clonazepam since I started taking Cesamet). What's important? It broke through the ball of pain,burning etc within 2 weeks. I noticed this week I haven't taken more than 2 Aleve (for my jaw pain) in the past 2 weeks. Yup, it kicked the snot out of the neuralgia pain I was having. I occasionally get a bit of a headache, but they're minor and short lived, compared to the agony I had been in, this is heaven. The only downside I'm finding is the cost. $350 for 93 pills (31 days worth). I'm glad I have insurance. It's worth the cost for me because I am living *almost* pain free and it's been a long time since. Definitely 2 thumbs up for me in regards to this medication 
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2004 to present - Trigeminal Neuralgia 2007 to present - Burning Mouth Syndrome March 2008 - Multiple Sclerosis DX 05/2008 - Relapse 05/2008 to 02/2009 - Copaxone 10/2011 - Relapse - Optic Neuritis developed 9/2012 - Relapse - Balance issues 1 sided 8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax) April 7/14 - Raynaud's Syndrome DX |
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07-01-2009, 12:38 AM
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Grand Magnate
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WooHoo! That's great news!
__________________
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| "Thanks for this!" says: | dmplaura (07-01-2009) |
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07-01-2009, 02:01 AM
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Member
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Great news,Laura! I'm so glad to hear ( read) it.
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| "Thanks for this!" says: | dmplaura (07-01-2009) |
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07-01-2009, 08:24 AM
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Magnate
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Glad to hear you finally found something to ease the pain!
__________________
I know the sound the river makes, by dawn, by night, by day. But can it stay me through tomorrows that find me far away? . I have this mental picture in my mind of you all, shaking bones and bells and charms, muttering prayers and voodoo curses, dancing around in a circle of salt, with leetle glasses and tiny bottles of cheer in the middle...myyyyyy friends! diagnosed 09/03/2004 scheduled to start Tysabri 03/05 Tysabri withdrawn from market 02/28/05 Copaxone 05/05-12/06 Tysabri returned to market 06/05/06 Found a new neuro 04/07 Tysabri 05/25/07-present Medical Marijuana legally 12/03/09 . Negative for JC virus antibodies! . I'm doing alright and making good grades, The future's so bright, I gotta wear shades! . |
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| "Thanks for this!" says: | dmplaura (07-01-2009) |
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07-01-2009, 10:45 AM
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Magnate
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Laura, that is wonderful news! I'm so happy for you that you've found something to relieve your pain.
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Mair . |
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| "Thanks for this!" says: | dmplaura (07-01-2009) |
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07-01-2009, 11:38 AM
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Grand Magnate
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So is this readily available for anyone who requests a rx, or is it still considered experimental?
Do you know what all is in it? Glad you are feeling better, Laura! Cherie
__________________
I am not a Neurologist, Physician, Nurse, or Hairdresser ... but I have learned that it is not such a great idea to give oneself a haircut after three margaritas
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| "Thanks for this!" says: | dmplaura (07-01-2009) |
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07-02-2009, 01:15 PM
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Magnate
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Yay!!! That is GREAT news Laura, i'm SO glad to hear that your pain has decreased so much!!
I hope the med continues working for you for a very long time!!
__________________
To the World you may be one person, but to one person, you may be the World. |
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| "Thanks for this!" says: | dmplaura (07-02-2009) |
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07-02-2009, 06:06 PM
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Magnate
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Quote:
__________________
2004 to present - Trigeminal Neuralgia 2007 to present - Burning Mouth Syndrome March 2008 - Multiple Sclerosis DX 05/2008 - Relapse 05/2008 to 02/2009 - Copaxone 10/2011 - Relapse - Optic Neuritis developed 9/2012 - Relapse - Balance issues 1 sided 8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax) April 7/14 - Raynaud's Syndrome DX |
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07-07-2009, 08:36 PM
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Senior Member
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Hi Laura,
I'm glad that you found a pain medication that works for you. How long can you be on it? Is it for short term use or will they rx it for you indefinitely?It must feel good to finally get rid of that head and neuralgia pain. I hope it keeps working for you. Do they increase the dosage for you, or do they let you take it however you want? Are you allowed to drive on this medication? Sorry for all the questions. I know it's for chemo patients, I just wanted to know how it effects people who use it off-label. Curious people want to know (me).
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LADY May happiness be at your door. May it knock early, stay late, and leave the gift of good health behind. "Life is what it is". We can only focus on controlling those things we can control, we must let go of the things we can't. |
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| "Thanks for this!" says: | dmplaura (07-08-2009) |
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07-08-2009, 07:39 AM
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Magnate
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Hey Lady!
From what I understand I can take this indefinitely. They worked me up gradually to my current dose (which I'm finding a bit tougher to adjust to). My #1 complaint about the drug is it makes me so drowsy. Other than that, I don't experience side effects that I can really notice. So if you have problems with fatigue, I'd imagine the adjustment period would be tougher. In my case, I take it daily. I'm not sure if he uses different doses for other people. It's still taking care of the pain, so that's what matters most right now! I hope it keeps working too!
__________________
2004 to present - Trigeminal Neuralgia 2007 to present - Burning Mouth Syndrome March 2008 - Multiple Sclerosis DX 05/2008 - Relapse 05/2008 to 02/2009 - Copaxone 10/2011 - Relapse - Optic Neuritis developed 9/2012 - Relapse - Balance issues 1 sided 8/2012 - Erythema Nodosum - diagnosed 10/2012, reaction to Topiramate (Topamax) April 7/14 - Raynaud's Syndrome DX |
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| "Thanks for this!" says: | SallyC (07-08-2009) |
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My Cesamet update :)
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