Meeting More People
August 24, 2008 6:41pm
Meeting more and more people who suffer from TN/ATN and now that I have opened a NEW group for my Anesthesia Dolorosa I have met even more …
Kewlbutterfly 
12:59pm, September 12, 2008
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About Me
Kewlbutterfly
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About Me
I have had TN and ATN since July 6, 2006. I had the MVD procedure done at OHSU in Portland, Oregon. The surgery failed, leaving me with all the pain and on top of that anesthesia dolorsa. I live with constant and intermittent pain and unfortunately have to be on medications for the rest of my life to avoid this horrible pain. I am looking for others who have had the same or simular problems. It is always nice to have someone to talk to who knows what you are going through.
I have had TN and ATN since July 6, 2006. I had the MVD procedure done at OHSU in Portland, Oregon. The surgery failed, leaving me with all the pain and on top of that anesthesia dolorsa. I live with constant and intermittent pain and unfortunately have to be on medications for the rest of my life to avoid this horrible pain. I am looking for others who have had the same or simular problems. It is always nice to have someone to talk to who knows what you are going through.
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Hugbook
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hope you are having a pain-free day. hugs
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Hope the TN has subsided for you; I just started another bout the other day. It's strange how this stuff lurks in the back ground always reminding us it's there then come raging back. Every twinge we receive makes us think "this is it, here we go again". It's been a while since you changed your frownie face so I hope all is weel with you. takee care
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thanks for the hug - hugs back!
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Thanks Rachel it helps to know that there are people out there that understand. I just don't want to let my son down.
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Support Groups
Close Trigeminal Neuralgia
I woke up on July 6, 2006 at 6am with TN and a week later started having ATN as well. I was despirate and had the MVD procedure on 8-28-06 and still have the pain except the surgery left me with Anesthesia Dolorsa. I am in constant pain and have to take meds in order to get the pain down to tolerate it. I hope to help others make informed choices and not jump in like I did. I would like to meet others with TN/ATN and help support one another. Message me if you have ANY questions.
Treatments
- Tegretol Not Working
- Allergies to all of these meds.
- Lamictal Not Working
- Severe Allergy~Swollen tongue and lips with hives
- Dilantin Working / Worked
- Works well.
- Topamax Not Working
- Had an extreme allergy to this medication. Hives.
- Dilantin Somewhat Helpful
- I use this as well as Nortriptyline to control Trigeminal Neuralgia it is helpful but not as helpful to me as Nortriptyline.
- Prayer Working / Worked
- Always works not always on my time but His. I have had to learn patience and how to wait.
- Oxycodone Working / Worked
- OxyContin 10 mg, very low dose.
Close Chronic Pain
I have suffered from Trigeminal Neuralgia both types I and II since 07/06/06 at 6am.
Treatments
- Heat Not Working
- Very irritating to my face with the Anesthesia Dolorosa.
- Lamictal Not Working
- Severe Allergy~Swollen tongue and lips with hives
- Methadone Not Working
- Allergy; Chronic itching and hives.
- Morphine Working / Worked
- MS-Contin, works very simmular to OxyContin. No bad side effects :-)
- Neurontin Not Working
- Oxycodone Working / Worked
- OxyContin 10 mg, very low dose. Have to go with other pain med due to no generic made now.
- Topamax Not Working
- Had an extreme allergy to this medication. Hives.
- Ambien Working / Worked
- Helps to aide in getting to sleep especially on nights where I dwell on this pain that NEVER goes away and all the insomnia that goes with it. I take 10mg when needed.
Open Fibromyalgia
I have been diagnosed with Fibromyalgia since 2000. My mother and grandmother also have been diagnosed with this as well.
Treatments
- Heat Somewhat Helpful
- Neurontin Not Working
- Allergy
- Ultram Somewhat Helpful
- Zoloft Working / Worked
- Ambien Working / Worked
- Works great for getting to sleep on painful nights.
- Topamax Not Working
- Had an extreme allergy to this medication. Hives.
- Lamictal Not Working
- Severe Allergy~Swollen tongue and lips with hives
- Oxycodone Working / Worked
- OxyContin 10 mg, very low dose.
