The progression

I am not one that has pain every day all day long. So I had a two week break about.... I had the breakthrough pain at my daughter's recital on the 17th, but it quickly ended. So, other then a tiny twinge here or there, I was doing quite well. Some soreness, low level at about a 2, just enough to know it was there. But I can live with it.

So, over two weeks, no flare.... and then kaboom today..... writhing. I have had stronger on the pain scale, but this was a consistent 6 or 7 all day long. Nothing I tried seemed to work. The narcotics dulled the searing, punched feeling in my jaw and gums, but did nothing for the occasional electrical shock feelings in my teeth...... I have never, to date, had all day pain. Usually 4 hours tops.

Is there some kind of progression to this? Is there something where with each progressive time that you go without pain, it gets worse the next time?

Man I need to write these questions down for the neuro if I ever get to see him.

One thing, the worst of the searing gum pain was numbed for awhile with ambesol. Yeah for that one.

Merry Christmas to me..... not. My poor mom. She was crying. I can't stand to see my mother cry and it was because I was in pain. Sigh.

Hi Lisa,

Merry Christmas! Each time I read one of your posts I feel as though its me talking haha

I seem to be following a very similar path as you, including the fact that my mum also cries and is very stressed by my TN.

I havent been in any sort of remission now since September. I like you do have some pain free/ish days and then out of the blue 'BAM' i have an attack - and this is on Tegretol!

A question I would like to ask you is - have you considered the MVD surgery? what are your thoughts on this? In my case I have a husband and mum pushing me towards it. I wont make any decisions until I see the neurosurgeon mid Jan 2012.

I hope you have some more pain free days ahead xx

Hi Lisa

I am so sorry to read that your Christmas Day was so ruined by the TN/ATN monster. I agree with the other two replyees, it has a mind of its own. It often chooses to visit when you least want it. Holidays and vacations are common times for it to strike. There may be no reason or it could be the raised BP. No one knows. Narcotics are known to work for ATN but often do nothing for the electric shock pains. Red would know why, I just know it does not work for TN in a lot of cases. It has been proven to be beneficial for ATN in many patients. It would seem by this and what you have written that you are double whammied and my heart goes out to you on that score. I am sincerely hoping that you gain some relief very soon. Take care. Jackie

Something for both Lisa and Rachael: I wish I could fully deserve Jackie's touching confidence in my knowledge of the TN/ATN monster. But there are a lot of things still unknown about these beasts. The "reasons" (or medical mechanisms) are still obscure concerning why it is that some people respond to narcotic meds (or anti-inflammatories, or Lyrica or muscle relaxants, for that matter), and some do not. Concerning MVD, Rachael, be aware that many neurosurgeons won't recommend it for ATN, because the outcome statistics are pretty dodgy. If your face pain emerged spontaneously rather than as an outcome of blunt force trauma or dental surgery, then some physicians may recommend RF Rhizotomy instead. Rhizotomy can be repeated downstream if necessary.

Speaking from my 16 years of conversations with patients and family members, I would personally recommend AGAINST Gamma Knife, Cyber Knife, and Glycerol Rhizotomy, as all three appear to have very limited positive results and a potential for actual harm over the longer term. Realize, however, that my Ph.D. is in engineering, not medicine. So some doctors might consider me unqualified even to have an opinion.

Go in Peace and Power

Red

I've been hearing the same things Red from actual patients. Everyone is telling me not to do any sort of surgery. It's quite frightening that you know it's going to progress. You know that almost nothing will make you feel better. And you just have to suck it up, deal with it. I have been asking the question on Narcotics vs Anti convulsants. I get odd answers as to the location of the disturbance in the trigeminal nerve. I've bee researching as much as possible to the validity, but not a lot of resources.

Jennifer, I am on both anti convulsants and Narcotics. I do believe that I have ATN as the electical shocks are actually few and far between. With a flare, they happen, but nothing like the other pain that is happening at the same time. It's annoying more than anything when the other pain is going on.

Rachael, I am waiting to see my neuro. I am so new to all this, I don't think they would do any surgery until all other options have been exhausted. And even if it was offered, at this point at least, I would not do it. Cutting into my head is a pretty big decision and the results are not good enough for me to risk it -- for now. I still hold out hope that some type of medication mixture will control it. From what I have read, those with the type of pain I have would not benefit from MVD surgery anyway.

sorry red, I am wondering if you can clarify what kind of TN i have?

It has come about out of the blue with no prior injury. I hqave the sharp stabbing pains and once it subsides i am generally pain free. The only time I have the vice like pain in my face is when Im having a bad TN day, otherwise it is just a sharp jab here and there until BAM an attack happens.

thanks

Rachael

Richard A. "Red" Lawhern said:

Something for both Lisa and Rachael: I wish I could fully deserve Jackie's touching confidence in my knowledge of the TN/ATN monster. But there are a lot of things still unknown about these beasts. The "reasons" (or medical mechanisms) are still obscure concerning why it is that some people respond to narcotic meds (or anti-inflammatories, or Lyrica or muscle relaxants, for that matter), and some do not. Concerning MVD, Rachael, be aware that many neurosurgeons won't recommend it for ATN, because the outcome statistics are pretty dodgy. If your face pain emerged spontaneously rather than as an outcome of blunt force trauma or dental surgery, then some physicians may recommend RF Rhizotomy instead. Rhizotomy can be repeated downstream if necessary.

Speaking from my 16 years of conversations with patients and family members, I would personally recommend AGAINST Gamma Knife, Cyber Knife, and Glycerol Rhizotomy, as all three appear to have very limited positive results and a potential for actual harm over the longer term. Realize, however, that my Ph.D. is in engineering, not medicine. So some doctors might consider me unqualified even to have an opinion.

Go in Peace and Power

Red

Rachel, we have a page on the site that is specific to your question: http://www.livingwithtn.org/page/type-1-and-type-2-atypical-tn

As a non-physician, I'd say that your symptoms are dominated by Type I (Typical or "Classic") TN.

Regards, Red

thanks Red, much appreciated :)

Richard A. "Red" Lawhern said:

Rachel, we have a page on the site that is specific to your question: http://www.livingwithtn.org/page/type-1-and-type-2-atypical-tn

As a non-physician, I'd say that your symptoms are dominated by Type I (Typical or "Classic") TN.

Regards, Red

Two week break. This leaves me little hope. I reached 6 days and then my "kaboom". I am now working on another 6 or 7 day break. Everything I have read says that after the break the pain episodes get more intense and the breaks shorter and shorter. I have not found this to be entirely so in my case. Although the possibility exists that due to the meds being more into my system now I am not noticing as much. I believe I have had days consisting of many twinges that I have believed would have had me in a grave were it not for the meds being more in my system now.

I have been wondering if this is like a volcano or earthquake. The pressure building and building then WHAMMO, watch out people HUGE attack if it were not for the meds.

The very sinister aspect of this disease is the teasing. These days of calm and when you think the storm has passed it hits you again. I keep thinking the condition is miraculously gone, want to stop the meds, but afraid.

I too have yet to have pain all day, except maybe it would feel this way but for the pills. Progression wise my situation is that the pains have rumbles all over my mouth now and this was not the case originally.

Has anyone stopped taking meds because they thought the condition was gone? What happened?

Regards,

Phoebe

I did, it came back with vengeance, it then took longer to regain control of. :(

Phoebe, I have stopped taking my medication. In my defence this was under the guidance of my GP, the pain went after I completed a 6 week course of TN medication.

It has been 7 months now without pain, although i do have aches. Are the aches signs of the TN or ATN, Im not sure. I went to my first Neuro appointment and asked if I should go back on medication but he said no.

My case is a little different as there may be a link to another autoimmune condition that i developed at the same time and I am taking large amounts of steroids to treat that and that may be helping.

I did at one point go back on meds for TN as my Rheumy advised it, but taking this and the steroids made me sick so I stopped the TN meds and kept on the steroids alone.

I am on a reduction plan for the steroids so I am looking out for signs of TN. Also I believe an injury may have triggered the original TN attack.

Can anyone explain why the second attack of TN is so much worse the the first and why it is so much more difficult to get it under control?

It is nice to be off meds but you do live in fear of another attack and I carry my TN meds with me at all times.

Many people have tried to take themselves off meds, with generally poor outcomes similar to Jackie's. If you are going to try to taper back on meds, then please do it with the advice and oversight of a physician whom you can contact quickly if you have an attack of breakthrough pain. Once this avalanche starts on its way downhill, it can be very difficult to get under control again.

Go in Peace and Power

Red