Hi, I'm new here and Trigeminal Neuralgia is hell on face...

Hi Everyone, my apologies if I'm doing what is out of the ordinary...I thought that this might be the easiet way to reach out for wisdom, experience, etc. I have suffered with trigeminal neuralgia for just over three years now. My pain varies between 7-10, though typically its an 8. Looking for any words of comfort, wisdom, experience, etc. Many thanks.

David, thank you for your warm welcome. I truly feel empathy for the hand that you too have been dealt. Thank you for your message of hope, it is certainly needed as of late. I urge you to stay strong and sent my well wishes your way.

In response to your question regarding medicine, I've been on Nucynta 50-100mg Q8h, mdd 400mg QD for three years now. It is well tolerated, however I maintain an average of 8/10 for pain. Additionally, I take 20mg of Cymbalta BID, for three months now and have found it to render my mobility increased. It helps my mood and kills my appetite and made the breakthrough pain frequency decrease. Sadly, I do not have health insurance and the costly amounts for these two meds do not make them feasible options anymore. I was told by my pain clinic that my options are merely Cymbalta, Tramadol (which I found useless) and Nucynta. In the past I've tried Lyrica, Tegratol, Gabapenatin, something that started with the letter T that escapes me now, acupuncture, ice/heat, (compression seems help better, though I'm not certain why) and, well...the list goes on. I think I may have burnt a bridge by hobbling out of the pain clinic after being there for a little under four hours of neuro-testing, having an unexpected period, bleeding all over the table and being told that after jumping through all of Friday's hoops that there simply aren't any other options available to me. Of course, telling her to stick it was a poor choice on my part, but I think everyone is allowed a little craziness from time to time. I find the answer of "there are no more options for you" hard to believe after years of working in pharmacy, as I know this to be quite untrue. I've never given them a reason to question my proper usage of my meds, I never over use or run out early. My bp clearly shows pain when I shoot to 169/98 when I'm typically on the low side of normal. I fear the upcoming detox of the SNRI and opiate/NRI. I cannot understand how a professional would allow that on her watch. So... Here I am. Wondering how I will handle this added stress of withdrawal on top of my already weakened state. Ugh. I have about a week and a half left of meds. There's my scoop!

Post Edited (Tasaulkah) : 7/22/2012 9:38:57 PM (GMT-6)

Hi Tasaulka

I wanted to welcome you here. Glad you found us but so sorry you are suffering so much. You will soon find out that the members here are very caring, understanding and full of knowledge.

Myself I suffer with intractable constant headaches. It been over twelve years now and like yourself I have tried all the meds, seen all the specialists and done every form of treatment available and nothing has helped my pain. I just keep ice on my head most of the time. What i am pursuing right now and this option could help you as well and that is an occipital nerve stimulator. It can also be used for the nerves involved in your case. You can find a lot of info on the net if you google occipital nerve stimulator. Are you in the states? I am in canada and have found two doctors here that do the surgery but i know it is done in several of the states. I have also found a facebook group of people who have had the surgery done with great results or looking into getting the stim. Let me know if you are interested. There are those with TN as well. You might also look at the migraine/headache forum for info or use the search bar.

I hope you will keep posting with us and let us know how you are doing.

Suzane

Hey Tasaulka,
I was interested to read your post, I too suffer with a form of Trigeminal Neuralgia and would rate it an 8 also. During the day I find it more bearable due to distraction, Cymbalta 120 mg am, Lyrica 150mg bd and then Xanax 1 mg prior to bed. I have not tried other meds, but I know there is not much else out there for me. I don't find tramadol too effective either, but neurofen plus helps occasionally but I don't want to go down that path unless I have a headache.
My pain is constant, it stings, bores, grips and pulls my left jaw around all day long...I am exhausted!
I did not understand your detox comments, what was that about? Lyrica in Australia is expensive and I hope I can keep it up. We have just had a $260 million govt grant for Pain studies here, hope they come up with some answers soon!
Good luck.

Hi Tasaulkah. You must be in a lot of pain to seek out HW. Im sorry that you have the need to come here. Im pretty new here myself and have really learned alot! Great people with loads of info/exp. and kidness. I hope you find the answers your looking for.
I hope you get well enough to not need HW but I think you found the best site/people on the net!!! WELCOME!!!

Hi Tasaulkah,

I'm myself suffering from Trigeminal Neuralgia, so I can understand your pain well. Attacks have become very frequent for me and now I'm going for a MRI tomorrow. Do not worry. This disease is not fatal although debilitating. Eat well, identify your triggers and avoid them. Try remaining stress free. Think positive. Make sure you

·         Eat soft foods.

·         Make sure your drinks and foods are not too cold or hot when you consume them.

·         Wash your face with lukewarm water (body temperature).

·         Use cotton pads when washing your face.

·         Rinse your mouth with lukewarm water after eating if tooth brushing triggers an attack.

·         Avoid known triggers as much as possible

 

Follow the advise of your neurologist. If attacks persists go for a MRI. MRI as my doctor says is not for diagnosing Trigeminal Neuralgia but for identifying tumors etc. which will be a rare scenario and for screening whether we require a surgery for the blood vessel that is causing us pain or not. I'm never gonna go for a surgery even if the doctor advises so as it is not the permanent relief and TN can come back even after the surgery.

 

Thanks

 

Savvy

Tasaulkah,
Sorry to hear you are having so much pain ad then all the other worries on top of that. I'm new to the site also but just wanted to welcome you to hw. Please keep us posted.
Janet