Hello
I start feel pulses on trigeminal area, I’m scared to death of relapse my last one was so sever and long for 8 months & I am off for 3 months only …
Please help me if you have any idea that I can prevent pain starting… I am really depressed & crying for 2 days now …
It is progressive. You can get help… Get doc to call to call in any or all of these… Lidocaine face patch…lidocaine cream…lidocaine mouthwash …
Consider MVD SURGERY with a top neurosurgeon . Keep posting
I echo KC, TN is progressive, and for me the remissions got shorter and bad times got worse as the years passed. Use your time while you feel decent, and find a TOP TN DOC. I know everyone’s resources are different, but it is important to find a knowledgeable Doc who has a ton of experience. Each case is different. For me it was traveling from Fl to MI for a MVD consult, and I am now 7 months with my life back. It was worth saving up for a plane ticket! My local doc was nice, but would have kept me on meds forever!
Keep posting! Take care!
I’ve had cold laser therapy and that seems to be the only thing that works for me-Theralase.com will show you locations in your state or province that use Theralase. I did it for 4 weeks for 4 days a week now I go once every twos weeks . It keeps the pain at bay. It’s totally non invasive. Good luck to you
I have heard Dr. Casey in Detroit is fabulous! I would agree, while you have clarity in your mind get to a neurosurgeon.
Have you started back on your med.I don't think any of us can tell you how to head it off unfortunatley.Yes,mine was progressive also.Best to you,hang in there!!
as has been said...it is progressive. Mine got worse and worse to the point that now i don't really have relapses...i just stay super medicated.
I agree that you should find a good doc and get a good plan in place.
*hugs*
~Mistee
If it where me, I would look into a neurosurgeon right away. When my pain started, it never stopped and didn't respond to any medicine. I was hospitalized 3 times just for pain care. I had surgery 8 months into it and I can honestly say that if I hadn't had surgery, I would not be alive. I have no feeling on the right side of my face and I get migraines now (I didn't before the surgery) but it was all worth it. I had a new born baby that I couldn't even hold. I hadn't been able to brush my teeth in 5 months. The last time I had attempted it, it set off a pain cycle so bad I had to be put on a morphine drip just to slow it down. The last time I was hospitalized, the surgeon took pity on me and canceled all his patients for the next day and did the surgery. It has been almost 11 years and I fear a relapse all the time. Don't wait until it gets unlivable before seeing a surgeon. Maybe medication will help you but you should have a relationship with a neurosurgeon if it doesn't. It isn't always quick to get into see one. I had lost all hope. I didn't think anything would stop the pain. There is hope.
As for me I suffered for 17years and I can honestly say after my surgery which was 5mths ago im now celebrating life at did mine at the mayo clinic the surgeons excellent I had csf leak but that was dealt eith by doing s spinal tap
Which Mayo Clinic and what doctor? I have been seeing a neurosurgeon at Scottsdale.
juliet miller said:
As for me I suffered for 17years and I can honestly say after my surgery which was 5mths ago im now celebrating life at did mine at the mayo clinic the surgeons excellent I had csf leak but that was dealt eith by doing s spinal tap
I know it is hard to do but try not to cry as it only makes the pain worse. You may need to figure out what triggers you might have that bring the pain on quicker…could it be caffeine, spicy foods, citrus, letting your face get cold out side? These are a few of the odd little things that have set me off from time to time so I just make a point to avoid them.
Good luck my friend and hang in there! My first treatment was not at all successful but I found the magic formula after 4 months of trail and error. There is life at the end of this tunnel!
Dodo
I’m so sorry you are having such a rough time. I just figured out cold seems to bring on a severe jolt. I had been drinking protein drinks and adding ice cream to slow down my weight loss
I'm pain free for 2 years after SURGERY. 3 days in hospital pain and medicine free when discharged.
Dodo
I don't have any answers for how to prevent a relapse but I agree with what Christina said about crying. From my own experience with this disease, if I cry I know it will bring on an attack soon after.
I'm so sorry to read how afraid you are. I totally understand the fear, wish I could write something more helpful.
Take care
I had glycerin Rhizomy in 2012 at John Hopkins ( they have TN speciality clinic). Good news: no TN pain, totally off all meds, no facial droopiness unless I mention it you can not tell. Bad news: severe dry eye, left side of my face is numb, left eye slightly larger, teeth & tongue numb. Not sure if this is permeant. But no pain. I prayer to God everyday and thank Him for the healing and I know full restoration is coming in 2014
I have very similar after affects as Blessed: severe dry eye, right side of my face is numb, teeth, tongue, nose, right ear. The right side of my face is droopy but no one but me notices it. I also get migraines now which I didn't before. It has been almost 11 years so I can honestly say the feeling isn't coming back. However, I don't want the feeling back. The last time I had feeling in my face, it felt like some was hammering a sharp ice pick into it every second of my life. No thank you. I'm happy to do without. It was strange at first but you get used to it. I have to use a lot of moisture in my eye or I end up damaging because it gets so dry especially in the winter. I do have dental issues as I can't tell the dentist when something is wrong. It can be frustrating at times but the pain was unlivable before. I was suicidal right before I had surgery I was in so much pain. Do I have problems I have to deal with because of the surgery? Yes. Do I regret it? Not for one second! I get to see my son grow up and I wouldn't have without it. He was 8 months old when I had the surgery. I didn't respond to medication so surgery was my only choice. I would at least give the medication a try because it is major surgery. It took me months to recovery. Good luck and I hope what ever choice you make it works out.
Hi Dodo,
Sorry to hear you are having a rough time. Can you get to your doctor and get onto the meds you need? And get yourself referred to a pain management clinic?
In the meanwhile, I think the best thing you can do is try and stay as positive as you can... I know for myself that crying sets off attacks because my face muscles get worked too hard, and tense up and that causes an attack.
Try and figure out what your triggers are. Mine are talking, laughing, smiling, chewing, cleaning my teeth, wind on my face, cold water on my face. If you can avoid your triggers, or at least lessen the impact of them (I've had to learn to talk without opening my mouth too wide, and I eat a liquid or very soft foods diet when I'm at my worst.) Cold food and drinks set me off, so I have to leave milk out of the fridge for a few minutes before I drink it, clean my teeth in warm water, avoid ice cream.
I also take supplements of vitamin B12 ... it's supposed to help the body repair the myelin sheath, but I don't know if it works!
What I find does help enormously though is just accepting that I have a chronic pain condition. Don't be afraid of it... fear makes people tense and tension triggers pain. Acceptance isn't going to make the pain go away but it will put you in a much stronger frame of mind to cope with it. And we have to learn to cope. Try and think positively, ... when I'm having attacks I usually think of the smiles on my grandchildren's faces when they see me, and this helps me get through the moment. While you are still reasonably well, start thinking of all the things in life that you love, things that could help you get through bad moments. Then you'll have a collection of positive thoughts ready for when you need them.
Hope this helps some.
Stolen (shamelessly) off the internet.( But, as they say, when life robs you, sometime you have to rob life back...)
There is a famous adage: “Pain is inevitable, but suffering is optional.” This anonymous saying sums up what you can learn about pain through mindfulness. You cannot avoid pain. Even if you are physically healthy now, at some point you may get sick, you may get hurt, and age and physical changes will occur. Pain is inevitable. It will come, and there is nothing you can do to prevent it—yet whether or not you suffer is another matter. Why is it that one woman can go through childbirth claiming that it was the most painful experience of her life while another declares it was the most transcendent? Along with other conditions, including the ease of delivery, the answer may lie in how to relate to pain. Clearly, sensory experiences are different, but how we relate to them—big or small—plays a powerful role as well.
Suppose we define pain as the pure physical sensation of the body responding to some negative stimuli, and suffering as our response to pain. From a mindfulness perspective, it is important to differentiate pain and suffering because however unavoidable pain is, we certainly have some leeway when it comes to suffering.
The biggest difficulty in working with pain is not the pain itself; it is how we react to it. With mindfulness, you can learn to see how your mental reactions to suffering function and how you can avoid being so caught in them. Here is a practice you can do if you are experiencing any physical pain.
The Practice
Try to get as comfortable as you can in your sitting posture. If the pain is really bad, you may wish to lie down. Find the most comfortable position to practice.
First take a few breaths and allow yourself to connect with the fact that your body is sitting (or lying down). Notice your posture and body shape. Now find a part of your body that is not in pain and bring your attention to it. Find a part that feels pleasant or neutral, at the very least. Explore whether your hands, feet, or legs feel relaxed and pleasant. Let your attention stay at this pleasant area for a few moments. Now bring your attention to the area of pain. What do you notice? Is the pain sharp or dull? Burning? Stabbing? Fiery? Clenching? Is it moving, or does it stay in one place? How deeply does it go into your body? Get very curious about the changing set of bodily sensations.
After thirty seconds or so (you can choose any short amount of time), bring your attention back to the pleasant or neutral sensations for the next few minutes. Notice if you have an attitude toward the pain. Do you hate it, fear it, resent it, blame yourself for it? Can you notice how it is that you feel or think about the pain? Do you feel any accompanying body sensation like a clutching feeling in your gut or vibration in your chest? Notice this reaction, breathe, and let it be there. There is nothing wrong with a reaction. If you have no reaction or the reaction stops, feel free to investigate the painful area one more time.
Return your attention to the pleasant area, and once again rest there for a minute or so.
Now, for the last time, return to the painful area. What do you notice? Breathe. Feel whatever is present on the physical level. Offer yourself a little bit of kindness in a way that makes sense to you. You can imagine holding that part of your body with care and compassion, or just offer this attitude to yourself. Notice what happens.
Return your attention to your whole body, sitting or lying and present. Open your eyes when you are ready.
Taken from: http://www.mindful.org/in-body-and-mind/health-and-healing/suffering-is-optional , which was adapted from Fully Present: The Science, Art, and Practice of Mindfulness, by Susan Smalley and Diana Winston(Da Capo Press, 2010).
I have had it on and off for about 3 years now --- and I'm sorry to say I don't think there is any way to prevent it from coming on.
If you are on medication - start taking it regularly again - I found once I took the Tegretol regularly it helped somewhat.
I am now opting for MVD surgery soon and hope that will help. My doctor said it is 95% effective and although it is drastic and risky - I am willing to do it just to end the pain, as I know how bad it can be; There are times I can't wash my face or brush my teeth; It started out feeling like a toothache and after 3 dentists and 3 teeth pulled for nothing - I learned it was TN. Try not to get down over something you can't control.
Hi dodo! I’m so sorry this is happening to you. I completely understand how your feeling. I will hopefully be having MVD in the next few months, but I have had TN for 16 years now, so I am worried that the results may not be as affective if I would have had it years earlier. Thru this site I’ve learned more about TN in the last few days than I have in these last 16 yes. Only because I’ve closed my eyes to what’s happening to me. So I guess what I’m trying to say. Is really learn what options are out there and please don’t be afraid to learn as I have. I hope this helps you. Your in my prayers…
Jenna