Hi New Here...

[allih]

Hi,

I am new to this forum. I was diagnosed with bilateral type 2 TN in September. I've done as much research online as I can and talked to my neurologist who has put me on 1200 to 1800 mg of Neurontin to keep the pain to a managable level. It really never goes away. I've done a course of Acyclovir thinking that it might be shingles related but that had absolutely no effect. The usual triggers of cold, washing, laughing, eating all make it worse.

I also have chronic migraines since age 12. I am now 45. I've noticed through the years that I would have episodes of pain in my left checkbone which corresponds with the secondary branch of the Trigimenal nerve that would last for weeks,triggering migraines that would also last for weeks. My neurologist does not seem to think that there is a correlation between the TN
and the migraines. But I wonder. He really specialzes in migraines, not TN. I don't think he knows much about this.

This TN pain (in September) all started with a migraine with pain on the left side of my face. The migraine went away but the pain didn't. Over the next week, the pain spread over all three branches on the left side and the lower two branches on the right side.

Have any of you heard or had any experience with migraine and TN. Is there a correlation beyond that of TN pain feeling like migraine? I know that migraines can cause lesions in the brain. Does anyone know if they can cause lesions on the Trigeminal nerve? I've looked through a lot of the posts here and looked online but haven't seen anything. I've ordered the book Striking Back and hope to find some answers there and some ways to help alleviate the pain.

From what I have read I am not optomistic about this pain going away anytime soon or if at all. Adding this to the migraines that I already deal with is such an incredible bummer that I am at a loss for words to say how sad and angry it makes me feel.

Thank you for any help that you can give.

Alli

[irishchick]

Hi Alli, welcome!! You found us pretty quick, good for you! sorry to hear though that you are dealing with both bilateral TN and migraines.

Did your neuro try tegretol or trileptal first, or did you go straight to neurontin?
just wondering, I was on neurontin and tegretol, had to stop tegretol due to side effects, but it did always work better (and longer) than the neurontin. I was up to 3600 neurontin per day.

I had surgery (MVD) March 2005, and now take no meds for TN. Took about 6 months, but hey- it worked! I had TN for 10 years pre surgery. I also have migraines - 2-3 per month usually. I had never heard that migraines cause lesions on the brain, I have had them for 18 years but no lesions were seen on my Cat scan or MRI. I was told if they see lesions, it indicates MS.

There is a weak link between migraines and TN, but not much is out there info wise.

There is a great community here, very informed, so if you have any questions beyond your own research please ask. I found that all the research I did couldn't compare with talking to actual people with TN, as you will not likely meet anyone in person with it.

I remember hitting my breaking point when I first had a TN attack and a migraine at the same time- not fun, as I am sure you know.

Are your migraines fairly well controlled with meds?

Well Alli, nice to meet you, and hope to see more of you here.

Karen

[allih]

Hi
Than you for your reply... I searched pretty hard to find a forum for TN... Thank god for Google!! In answer to your question, my neuro went straight to Neurontin as I had been on that before for migraine and I tolerate it well.

I've been trying to get my migraines under control for years and have finally found a drug cocktail that works. I take 112 mg of Effexor and 100 mgs of Topamax a day with Midrin and Fiorinal as abortives if I have a breakthrough. That has decreased the HA's from 3-4 a week to 2-3 a month. Much better. I'm hoping to decrease the Topamax because the cost of all these meds is prohibitive!!

I've seen that some people take Effexor and Topamax for TN also. I would think that since I am taking Effexor, Topamax and Neurontin that I shouldn't be feeling anything from the TN. I noticed that if I skip dose of Neurontin, the pain is so much worse, it takes a good day or two to get a handle on it again.

And yes, a migraine and TN together is just about enough to send you over the edge. That is what got me on the Effexor. I wanted to die when this happened. It was too much to handle. More pain that wouldn't stop. My GP gave me the Effexor for the depression I was feeling and ,wow!!, it helped with controlling the migraines so I can handle the pain from the TN better.

Now I just need some answers so I know what to expect. I know what my life holds with chronic migraine disease. Now I need to find out what I can expect with TN. If it isn't going to get better I need to know so I can figure out how to deal with it as best I can.

Alli

[ella138]

Hi Alli
Glad you found us. You're lucky that the side effect of the Effexor took care of your depression and your migranes! What a bonus.
I hate to be the bearer of bad news but, TN rarely gets better on its own. There are times that is can go into remissions, but the longer you have the desease the shorter those remissions become and the fewer as well.

TN is usually caused by a vessel like a vein(s) or artery(s) pressing on, or compressing the trigeminal nerve. This causes the nerve to misfire causing the typical electric like shocks of TN. I suggest strongly that you get the book Striking Back if you dont already have it. It is the facial pain/TN handbook.

Read through the Newbie sticky (http://brain.hastypastry.net/forums/showthread.php?t=2338) at the top of this forum. There is a lot of information about TN there, as well as how you can buy the book.

The key with TN is to try to find a comfort level that you can live with. Whether it be through medications, a procedure, or something alternative, you have to find what works for you. If it can be controlled with meds, then you probably want to go that route for starters (as long as you can handle the side effects of the drugs). It is all spelled out very clearly in the book, what it is, pictures, meds, procedures, statistics and tons more.
Good luck and stay in touch.

[baywatcher]

I've had tn for years but never had a migraine. My brother and my nephew are both migraine sufferers though, and I've seen what they go through. (Oddly, my daughter in law also has migraines - maybe they're more common than I realized). The idea of a migraine and tn at the same time is too awful to contemplate.

Sorry I can't give you any helpful advice, just sympathy. I'm on the forum right now after reading an e-mail from the TNA talking about a bio-feedback device that has great reports. You might want to check their website <www.stopthepain.org> and see what you can learn. I am tired of meds after all this while but not probably a good candidate for surgery, so I was quite interested in the idea of bio-feedback.

Maybe some of our members have been in a similar position and can offer some direct help. Nancy

[Mom2boys]

Hi Alli,

I was a migraine sufferer for years and years until I became pregnant. Something in my pregnancies rewired my system and I have had very few since my sons were born (2001 and 2003). I have found no direct association to my TN symptoms other than first being Dxd with cluster migraines due to my migraine history. Easy mistake :rolleyes:

I remember the fear that gripped me when I was first diagnosed with Trigeminal Neuralgia August 2005. I was honestly devisated, crippled by grief, confusion and fear. “ Wait Im only 34, why me? Why now? My career? My kids? My DH? Will I be able to kiss them again? Read to them in bed? Walk in the wind? Snowboard, hike or go for my long runs in the rain?” All the things I love. In time, I have found that I can manage my pain with meds and live a very full colorful life. The fear slowly has been replaced with hope. Hope that I can continue to manage my pain with meds. Hope that technology will catch up to this gripping diagnosis and we can all live pain free once again. Hope that if this is what I was dealt that I continue to fight and not give in.

I know how frightened you are but you will find your way and many times with the help of this site. It’s a endless source of knowledge. We have all felt what your feeling. Many, for so much longer than I and are my true inspiration. Even though I am a bit of a cyber flower and do not post much. You will have good days and really really bad days but you will be OK!

[Jane]

Hi Alli,

Wow, what a double whammy with migraines and tn. I have had migraines in the past, but luckily not since I developed the tn -- cannot imagine both at the same time.

Definitely read Striking Back and you might also want to get the new book from the TNA called Insights. And the new biofeedback option that was announced on the TNA website today that Nancy mentioned sounds really interesting -- yet another option. I am currently awaiting surgery (probably in early December) as I have had all kinds of problems with a whole arsenal of meds.

So it probably isn't just going to go away on its own (but you never know), but there are certainly lots of possibilities for treating it and making life livable. And the people on this forum are wonderful!! I am relatively new here myself and have learned so so much by reading the posts here. And the support from people who **really** know what you are feeling means so much. Sorry that you have to be here, but glad that you, too, found this haven.

Jane from kentucky