I hate this disease

Before I speak in front of a group or have to talk for long periods of time I hire a private physician to numb parts of the left side of my face by injection. I sometimes have to stop in the middle of a meeting to have the physician administer morphine so I can continue. Even though I've done it a hundred times.....it still embarrasses me every time....I have spent thousands of dollars on this sh#$%. Every surgeon says they can fix it and fails. F!#% this disease.

I don't know what you do for a living , but just for a minute put yourself into a situation where you can't pay your electric bill , and you are suffering great pain . How do you pay for Drs when you struggle to keep food on the table for your family .

Yes - F#$% this disease . But consider how hard it must be for people of less means than yourself . Always be grateful .

I work in sales so I can identify with what you are saying. When I meet with clients I am in agony by the end sometimes. My pain moves so talking is only a trigger sometimes. Everyday is like a surprise.

F&%$# off TN is right! My life is great other then this disease and it gets in the way of everything.

Im sure you might have tried this… But can you swig RX lidocaine mouthwash??

this is a terrible disease; no doubt about it. it changes us and creates entirely new personas for us. i am so sorry for every needle and drug you have had to take just to do what you need to. the hope or illusive goal is to ‘achieve’ a remission.

i had mvd surgery in 2013 that was not successful. my options are limited and this is part of my frustration. i am sure part of your frustration is also the lack of options available.

i am sorry. stay strong. hugs

You are very strong. I cannot imagine being a public speaker and dealing with this pain. Do you mind me asking what meds you have tried and have any worked for you? I am tn2 and Gabapentin helps and recently added Nortriptyline which many have said helps tn2.

Guys and gals - whilst whole heartedly appreciating the sentiments expressed, please be mindful we have some younger members and keep your language appropriate as per our mission and rules - thx.

Yes. F this disease. I concur. As an attorney, I get it. It is horrible to experience pain in front of others. I fear the day that the pain is so bad I can no longer work. I am so grateful for each day I beat the pain.

I totally agree with you! I am a college premed student, sitting in class with the pain is hard, much less talking in front of the group! What operations have you tried? I have had an MVD and Balloon Compression. Both failed, the latter made things worse. How did you find a doc to do the blocks like that and where do they inject at? Honestly, I would be open to trying nerve blocks again. Also looking in to various types of neuromodulation devices.

To the first post: I don’t know if it is allowed but if I would like to contact you - I’m sure we could find a job you could do from home. If you are able of course and if the company agrees

To the last post: I’ve had MVD and Gamma Knife operations. There are many doctors and websites that offer private services. The injections are above my left eye, to the left and down from my left eye (I would saw upper jaw but perhaps higher). One very long needle through the sinus and one more in the neck or jaw (depending on the anesthesiologist)

The meds I’m on are Carbamazepine (Tegretol) IR 600mg in the morning and Carbamazepine XR 1200mg. Diazepam 10 mg in the morning or when my face or eye starts to twitch and a variety of painkillers depending on the situation or severity of symptoms.

They also have a very long needle that goes in the cheek but makes you unable to speak properly…forgot that one lol