..recently i had a bout of stomach virus (and all the messiness there-in). During this time, i was also having a rather intense type II pain flare up (the deep burning pain). However, each time that i needed to vomit (sorry), my face/mouth did not hurt at all while that was going on.
(and yes, i thanked god, allah, the goddess, budda and rest of em for THAT.)
My point being...why would the pain just go away while i needed to puke? Is it because i was so focused on something else and not thinking about being in pain? And if so, does that mean the pain really isn't there unless i think about it being there?
I'm not belittling any of us or making light of TN...i really did wonder about this for the whole time i was sick. I was miserable in the belly department, but my face seemed to know i couldn't handle both...i guess.
As the stomach virus eased away, the pain came back in full force and was a couple days long.
Anywho...just wondering if anyone else has a similar thing. Or any opinions...
When my Type I TN flares up, I find that I can somewhat alleviate the pain momentarily, just enough to allow myself to speak a few words softly or to take a few spoonfuls of soup (rather than just sipping thru a straw) by digging my fingernails into my face just at my gum line and alongside my nostril (where the pain is often the most intense). My husband and friends say that they can tell when my face is bothering me (starting to have a little break-through pain) because my cheek above my lip will be red and have little crescent indentations all over from my fingernails - I tend to do this unconciously. I think it is because this "real" pain somehow overrides the false pain signals from the TN (and is less painful than the TN!). This was a real eye-opener for a couple of my friends who didn't really understand exactly how excruciating TN could be.
I am not certain about how this would work in your situation, but maybe there is something about how your face and neck muscles pull against each other when you needed to vomit - vomiting seems to have its own discomforts that may have distracted the TN.
Your TN pain is definitely a real thing in your head - and NOT just a made-up thing in your mind. Glad your TN flare up is subsiding.
Firstly, I have never experienced the pain of TN, my mom had it and luckily has had three procedures (MVD, glycerol injection and a balloon injection) and now gets an occasional twinge.
My first though was when you vomit you hold your breath, then breath quickly...so that would affect your heart rate, thus change your blood flow.
Secondly pain is an electrical impulse to tell your brain something is not quite right, whether in your body OR in your environment OR your thoughts. As soon as we know what that is then the pain should go.
I absolutely love 'does that mean the pain really isn't there unless I think about it being there'. What do you think? What if that were true? Is it possible or is that too much of a paradigm shift at the moment? What if it were possible, would it be worth experimenting with it to find out?
I have tried to get my mom to try eft, nlp, hypnotism, and I now understand that as TN is so debilitating that if you are in the pain you just want it to stop and therefore cannot 'tap' or even concentrate. If you are not in pain you are enjoying the peace that you don't want to think about it. Another blockage against the alternative route is that as long as you don't try it, it won't fail, so there will always be hope. That one took me a long time to understand.
Anyway, good luck on your journey and the way you think is as important as what you think, so think good thoughts.
I'm no medic but, just as we can take medication which affects the way we receive pain signals (eg. amitriptyline), I imagine that the stomach issue also, for a while, disrupted the pain signals from the TN. So, I'd say, it is biological and not controlled by you. There are treatments used to break the neurons that are firing wrongly in the head. (sorry can't remember what it's called at the moment). Best wishes, Dove.
ps. When I used to get migraines, the dreadful head pain was always alleviated for a short period after each time I vomited.
Hi Mistee, Like Vagirl, I find that I create a real pain whenever my face is playing up. By poking my finger in my eye - silly as it sounds, sometime it seems to let the brain know. It also tends to relax the muscles in the face in a bit which can become rock solid when in pain for prolonged periods of time. Sometimes too, if you stub your toe, then hit your finger with a hammer - you'll feel the hammered finger and forget about the toe :) for a while anyway. Pain being relative
When my Type I TN flares up, I find that I can somewhat alleviate the pain momentarily, just enough to allow myself to speak a few words softly or to take a few spoonfuls of soup (rather than just sipping thru a straw) by digging my fingernails into my face just at my gum line and alongside my nostril (where the pain is often the most intense). My husband and friends say that they can tell when my face is bothering me (starting to have a little break-through pain) because my cheek above my lip will be red and have little crescent indentations all over from my fingernails - I tend to do this unconciously. I think it is because this "real" pain somehow overrides the false pain signals from the TN (and is less painful than the TN!). This was a real eye-opener for a couple of my friends who didn't really understand exactly how excruciating TN could be.
I am not certain about how this would work in your situation, but maybe there is something about how your face and neck muscles pull against each other when you needed to vomit - vomiting seems to have its own discomforts that may have distracted the TN.
Your TN pain is definitely a real thing in your head - and NOT just a made-up thing in your mind. Glad your TN flare up is subsiding.
This is interesting. I have had TN for about fifteen years on and Off. I always found that if I was very focussed on some activity that the pain would go away. As an example, I had an old wooden boat that I was restoring, and I found that I could go pain free all day as long as I was busy. As soon as I stopped and tried to relax, the pain would return. This was always the same. It had to be physical activity, mental concentration alone was not enough. I spoke with my neurorogist and she told me this was not an uncommon phenomeno, but that it is not well understood. I wonder if it has seomthing to do with suppression of nerve signals. Just as we suppress background noise when we concentrating on listening to someone, perhpas we suppress the signals from "light touch" nerves that are thought to be the original trigger for TN pain. Often if I accidentally cut myself while working, I do not notice until I see the blood, I am sure I would have felt it if I had not been engrossed in something.
Unfortunately the boat is now restored, and my doctor will not write a prescription for a new one !!!
I would be interested to hear from others. if they have had similar experiences.
Just as an aside, I am now totally pain free, having undergone MVD surgery last month. The surgery was a resounding success, and I was up and back to work in three days, with no ill affects whatsoever.
I also have Type II TN (have had this since 2011) and have not had a waking second without the burning/grinding pain on the right side of my head and face. I have been extremely ill (vomiting, etc.) on multiple occasions over this time but the pain has never subsided during these illnesses. The only time I do not feel the pain (thank goodness) is while I sleep. I have seen countless doctors, including several neurologists and neurosurgeons, and was finally able to get a diagnosis. In my case, based on the MRI scan, the neurosurgeon believes the trigeminal nerve is compressed by a vein (lucky me, as he told me that arterial compressions are more easily treated through MVD surgery, although these procedures are much less effective at treating Type II TN regardless of the source of compression). I will ask him if he can think of a reason for the lapse in pain that you experienced the next time I see him. He is a renowned surgeon in this field (Dr. Babu at NYU Langone).
Like BM52, I can stay busy and not notice it so much, unless I'm outside or under a ceiling fan, air moving sets it off. There are times I can sit and work on a computer, read recipes or search for them and it's at bay a bit,if I stop and think, it's still there. Temperature changes also set me off. However, I've found that I can hold something hot behind my ear (like a cup of coffee) and the pain eases up sometimes. So glad to see that BM52 posted success with MVD. I will have this at Duke New Years Eve. I've had TN for 6 years with almost no remission, can't take most of the drugs but very thankful mine is not horrible, just chronic and at times bad. Good luck to you
Pretty wild.....I too had the stomach flu about a week ago and I was so worried about a flare up when I had to vomit, I hate it anyways as I'm sure many do. But I was pleasantly surprised when there was peace in my face and my stomach felt better. It was a win - win.
Of course I couldn't eat and the next day barely ate. Using the jaw for drinking or eating is what gets me going. I'll get up and make coffee and it's all good and then after around the end of the first cup I can feel my jaw start to tighten and soreness begin.
So I suppose if I didn't drink or eat I'd be ok?!?!?!
Perhaps the vomiting stresses the back of the head as opposed to stressing the front of the head?
Glad you posted that because I too had wondered!
I am very thankful that it happened that way because the two together would have been just too much!
I was having a pretty bad bout of tn around this time of year,maybe 3 or 4 years ago.Mine is type 1 and quite horrible.Well,I came down with the flu.Went to a local quick clinic and got the shot that is suppose to head it off if caught early.Was scared to death about the retching as it puts such a strain on the face and head.Well,the TN pretty immediately thereafter calmed down and it went into a complete(if temporary) remission.I had a regular doctors visit sceduled shortly thereafter and of course he was familiar with my TN.I told him the story and he simply said,well,the body does strange things with severe pain and sometimes doesn't give you more than you can handle.He also suggested maybe i SHOULDN'T take a flu shot the following year.In other words,he didn't have a clue and was speculating as we are.
I had the opposite reaction when I was on Neurontin. It caused me to have "violent" vomiting episodes. When the trigger point was on my gums or anywhere in my mouth, the vomit would trigger shocks. I would sit on the floor afterwards shaking from the pain and my entire body was soaked with sweat. I truly felt that I was being tortured and there was no one to help. The same thing was happening when I was switched to Tegretol. Now I take Lamotrigine and I still get nauseous daily, but I only vomit occasionally.
As crazy as this sounds,when the trigger points are in my mouth, specifically on my gums, I find my using my tongue to repeatedly rub the trigger point, helps reduce the frequency and intensity of the shocks.
I have my own contribution to this conversation but first a question for all of you who had the stomach flu. What did you do about your meds? I have a small daughter and I worry about kid germs and catching the flu, which I'm sure I will, eventually. Does anyone know what you do if you throw up your meds? How long before they get out of your stomach and into your bloodstream, liver, whatever?
Anyway, I have type I, electric shock pain, pretty much exclusively on the right side. (I'm starting to wonder if I'm heading for left side pain because of some tingling and strange sensations, but that's another conversation.) Because of the right side pain, I chew my food almost exclusively on the left. A few years ago, just to make life interesting, I was diagnosed with a malignant tumor on the left side of my mouth. I had surgery, no need for radiation or chemo, and now I'm almost three years with no problems (hooray!). But for almost a year after that surgery, I chewed on the pain side, the right side. And for almost a year, I had no pain. I still took my meds but there was no breakthrough pain at all. I have always thought that my body somehow decided that the drama of cancer was enough and gave me a break on the TN stuff for a while. And then of course, it came back and here we are. But I'm very, very interested in this conversation about how you manage your body and how your body manages you.
I just want to share with you the very positive results of my surgery.
I was discouraged from having the the operation for almost 15 years, I saw many neurologists and even a couple of neurosurgeons who said that it should be considered only as a last resort. In September the pain had become quite unbearable, and I went to see a surgeon at (Dr. Eskandar) Mass General Hospital.n He performs this op regularly (several times a week)
He looked at my MRI and sad he was confident that there was a blood vessel impinging on the nerve, and that he was 100% confident that he could cure me of the problem.
I was still very nervous, given what I had heard and read on the web.
However the surgery was quite a miraculous success, I woke up three hours afterwards totally pain free and with no ill affects other than some soreness around the incision. I stayed in hospital one day and was home the next. I took a total of two tylenol and was up and about the next day, feeling perfectly normal.
I truly hope that you have the same results as I did., and that you start the new year free of this dreadful pain.
I will keep my fingers crossed for you.
Bob M Deborah said:
Like BM52, I can stay busy and not notice it so much, unless I'm outside or under a ceiling fan, air moving sets it off. There are times I can sit and work on a computer, read recipes or search for them and it's at bay a bit,if I stop and think, it's still there. Temperature changes also set me off. However, I've found that I can hold something hot behind my ear (like a cup of coffee) and the pain eases up sometimes. So glad to see that BM52 posted success with MVD. I will have this at Duke New Years Eve. I've had TN for 6 years with almost no remission, can't take most of the drugs but very thankful mine is not horrible, just chronic and at times bad. Good luck to you
These revelations are so interesting..if there were not the horrible pain in every word that I can relate to.. I would be fixated reading all our experiences.. There are things that I notice I do too when the pain gets to me.. First I get a hot wheat bag and put it in the pain,, I also crash through the pain and rub the place in my mouth where the pain is.. I know.. I cant bear to touch it , but I do and it gives some relief... But the thing that helped me , was when I learned that my jaw is out of place.. I can put my finger on top of my jaw near my ear hole and press down as I close my mouth and mostly the pain goes.. It comes back after some time, but if I try and get the ends of my jaw in the right place in their sockets ...just in front of my ear. then I have a good chance of getting rid of the pain.
However, I have had my jaw put back in place by a chiropractor who knows ahat he is doing for TN and I have been pain free for 10 months so far.... Try it !!
When I am stressed out I am tense all over... and I clench my teeth .. that puts pressure on the jaw and creates the pain. when I am not tense my jaw relaxes and the pain goes.. so when you concentrate.. your jaw is not tense and is not putting pressure on the nerve. My chiropractor tells me he has good results treating people with TN.. I said in my history that a friend had TN for 32 years.. she yawned and couldnt close her mouth, and when finally she could shut it.. there was no more pain .. and thats 6 yers ago... thats where I picked up on it being due to my jaw being out of place... there are exercises you can find on the net to help when you are trying to get the jaw back in place when your chiroprctor isnt nearby. Make sure your chiro knows what he /she is doing.
Good luck.. I havent had to take any medicine except Codral Forte.
This discussion about being pain free when vomiting is quite interesting,
Most of my TN shocks are triggered by brushing my teeth, washing my hair, eating, talking, smiling or any other facial movement. I seldom, if ever, have TN shocks while I'm exercising, and I don't remember any TN shocks while working outdoors.
I have had relief from pain after applying Capsaicin to the area of my face that feels the TN shocks. The relief lasted as long as the burning sensation.
Bob, bman52, your's is the best I've heard from the surgery. I've often thought that people with bad side effects are the only ones that continue with this site or others. It's so very good to hear a positive review and I thank you for taking the time to keep the rest of us informed. I'm so anxious about this, you can't imagine what a blessing it was to read what you wrote.
I think you are very right about the generally negative feedback, it does seem that only those with bad experiences are moved to write about them. I feel terrible for those who continue to suffer after the surgery, but for many like me it is a life saver. My surgeon claims a 90% success rate, he (like may surgeons) is quite arrogant, but he assured me I would be up and back to normal in no time at all, and he was as good as his word. I am still pinching myself, as I cannot believe how well it went, it was less trouble than having a tooth out !.
My wife had a colleague at work who had the same surgery by this surgeon, also with excellent results, and it was her experience that convinced me to go ahead.
Keep confident, and please let me know how things go. I hope to hear great news.
Bob M
Deborah said:
Bob, bman52, your's is the best I've heard from the surgery. I've often thought that people with bad side effects are the only ones that continue with this site or others. It's so very good to hear a positive review and I thank you for taking the time to keep the rest of us informed. I'm so anxious about this, you can't imagine what a blessing it was to read what you wrote.
my main trigger was the muscle that lifts the lip up in a snear, or that you squint with,and smile too i guess, so while working as an electrician, i rarely got hit at work unless i needed to talk, so i would text or write stuff down if i was having a bad day. i only had 2 episodes while sleeping. so it is weird that it is not all the time. my mvd was a success as well, the recovery was a bear, but the last pain i felt was before the surgery and none after i woke