New to this website

Hi everyone,

Let me introduce myself. I have had TN Type I for 3 and a half years. Mine just came out of the blue, with no warning. It took me 6 weeks to be diagnosed by my GP, put on Tegretol and after 3 weeks was pain free. A visit to a Neurologist and an MRI confirmed that I had TN in the mandibular branch with nothing showing on the MRI and no reasons why I have this. Over the years I’ve had attacks (mostly attributed to stressful times in my life), where I’ve upped my dosage of Tegretol, but each attack is more painful and leaves me on a higher dose of Tegretol. Last year’s attacks were quite severe so was put on Lamictal with Tegretol, but this did nothing. I started seeing a Chiropractor for upper cervical treatment, giving me relief for 6 months before my most recent attack, which has been debilitating and is leaving me feeling there is just no hope. As well as the sharp jolts of pain, which I might add have changed in feeling to be more “clearer” (for want of a better word) and more painful, I also started to have spasms of this pain which would go for up to 45 seconds at a time. These would start when trying to put a toothbrush in my mouth, when eating, talking, once just from the vibration of walking. I increased my Tegretol to 1000mg but this was still not taking the edge off the pain. My GP added Gabapentin 300mg, and this has now taken the spasms away, and taken the edge off the jolts in my face/mouth, however am still in enough pain that I am mostly on liquids or soft food.

I am still working, however cannot talk without pain so try not to (hard when I am in HR!!) My colleagues and managers are very supportive, but how long will their patience last? I am very forgetful, and come home to my husband and 3 kids and do not have the energy to do anything. My husband is also supportive, but my kids are too young to have to watch me crying all the time and not want to do anything except lie down.

My doctor has suggested I see a Neurosurgeon to discuss surgery. My appointment is next week. From what I have researched (and researched and researched!!), MVD would be the best choice, if I am a good candidate. I am quite scared of having the surgery, however cannot go on with the pain and/or the huge doses of meds. I am almost always having double vision, and with my tiny 50kg frame, am worried about increasing meds further. I am only just in the non-toxic range as it is.

I would like to ask if anyone else have these uncontrollable painful spasms which can go on for up to a minute each time, spasming in my face, and sometimes while it happens, my chin and tongue gets a sensation of burning. Is this a normal progression of the condition? Up till now, I have just had the painful ‘electric-shock’ like jolts.

Anyway, I have enjoyed reading everyone’s posts for the last few weeks, and am so glad to have joined so that I too can hopefully provide support to you all, and am really reaching out as this is such a lonely condition.

Gen xx

(((((((((HUGS))))))))))) Your story is very similar to mine. Right now I am on 1200 Tegretol. Mine increased from 200 a day to 1200 a day in the span of 3 1/2 months because of breaking through. I have researched until my eyes are crossed and have decided that if the time comes that I can't function on meds any longer, and the pain is still there, I will go with the MVD. Don't let this disease take your life away. Let me know how you are doing and what you decide. :-)

Thanks Donna. Not that you wish this condition on anyone, but it is good to know others are feeling the same, and live their lives like we do. Yes, I made the same decision, that the MVD is only if I cannot function on the meds......I am sad to say that this is the case with me know. It is time. I will blog after I have seen the neurosurgeon on Thursday. :-)

Gen, you did a great job describing how the TN treats me.The main difference is I've been dx with MS and TN for over 20 years. Tegretol has always been my "drug of choice" with other drugs added to it during severe flare ups. In the beginning I could go into remission for 2-3 years in between attacks. Over the years, these flareups have gotten more frequent and longer duration. One flareup lasted 5 months, but 2 months is most common now. During remission, I take 800mg TegretolXR which keeps me relatively pain free with just occasional flashes. Three weeks ago it flared and I've been on a totally liquid diet for 2 weeks now. I'm taking 1600mg Tegretol, can't talk or brush teeth, but so far have avoided the pain "locking in" for minutes at a time. My neurologist moved out of state and to make matters worse, I'm in Germany visiting my sister and not due to return to the Milwaukee area until March 1. So lets hope I can continue to control it until I find a doctor either here or back home. P.S. I'm new to the site as well and its definitely helped to keep me calm and get thru this. I too am ready to start looking at surgery when I get home.

Hi Dee, I hope you're doing OK. It must be horrible to be in another country and to feel so horrible. I can't imagine..... I know it's easier said than done, because we've all been there, but try to stay calm and take one day at a time. I know for me stress would make me worse, so if you can keep calmer, maybe you can keep the really bad "locking in" pain at bay. I'll be thinking of you. And yes, look into surgery. I just had my MVD last week, out of hospital 2 days ago. So far I have reduced my meds by more than half, and I have no pain and no side effects. It is well worth the risk, as scary as it is. ((((HUGS)))) to you.