Hi All, I'm newly diagnosed and things have been moving very quickly. Within a week I was diagnosed by my GP after getting the all clear from my dentist. Saw my neurologist yesterday and he is start ing me on Tegretol(been on Gabapentin for 11 days). During what is normally a lovely experience today, getting my hair done I had a searing 15 min episode. Tears were streaming down my face. Thankful ly I was with caring people. Tonight at 8pm it came back and hasn't let up and it's now 1:45 am. I just took some Tylenol but think I'm going to need something more than that for this pain. Its really bad around my teeth and feels like I need 15 root canals. You are the experts with the experience having been through this and continue to fight it. Thanks for all your advice
Hi Foxboro,
I'm so sorry to hear you're having an episode. If you've just been recently diagnosed, best thing to do first is try and work out what your triggers are and then avoid them like the plague. If touching, blowing/breeze or temps are potential triggers, you need to be really careful when you go to the hairdressers. I went today, first time in about 12 months, because I realised I was avoiding it like the plague, but hair was driving me more nuts.
Anyway - don't go to the hairdressers until you know you have the symptoms under control. If you do go take your meds first, then explain to the person doing your hair you have a neurological condition and they need to avoid touching your face in anyway or getting your face wet. Blow drying - up to you, but for me I just get them to scrunch if I get my hair washed and I do the rest at home. If you have a fringe, make sure you explain to them they can't spray your fringe with water before they cut it. All in all, dry cuts usually work best all round.
Sometimes it takes a while for you to get the right balance of meds - its trial and error for everyone and can take a while to get the right mix but it does get better. Working out your triggers though is a really good first step to managing your condition. Hope this helps:)
Hi Foxboro,
So sorry you are in so much pain. I agree with Smily about triggers. It really takes some time to figure out what yours are. Unfortunately, you will start seeing patterns with your attacks. It could be touching a certain place on your face, head or in your mouth. It could be brushing your teeth or having a shower. It could be wind or cold air. Some of us don't really have physical triggers. For me it is stress, lack of sleep, weather (barometric pressure) and cold air to name a few. Anxiety can make an attack worse. I know that is a catch 22 but you need to try to stay calm.
And usually pain pills of any kind don't work. Tylenol, Advil, Naproxen and heavier prescription pills too. That is why this can become unbearable. It is sometimes hard to find relief during an attack.
I find hot compresses help--a hot water bottle, hot bath or microwavable heating bag. Also if you have pain in your jaw or cheek capaicin cream can help or Voltaren Emugel cream. Some people also use Lidocaine cream or gel...there is a kind of Lidocaine mouthwash that can be prescribed that numbs your mouth. All will provide some temporary relief. I have heard of toothpaste and mouth wash for sensitive teeth can help if used everyday.
The meds do take time to work and to increase dosage too. You have to somehow be patient with that. For me, my TN is different every day. I have high pain days and low pain days. I hope today is a low pain day for you. I also try to sleep when I am in pain...it tends to reset things.
I know what a frightening and overwhelming experience this can all be. I am not far from you at all. If you want to meet for a coffee or have a telephone conversation please let me know. For me it is late at night that is the hardest. Everything is still and quiet and there is no distraction from the pain. I mean it. Get in touch with me. You have my email and I am going to email you my cell number. I know we are strangers but it is all these amazing people that get me through the rough times. Sometimes you need to talk to someone who understands.
Jane
I feel your pain. I have been dealing with everyday constant burning, jolting, tingling pain. I had an MVD in 2013. I had relief for a few months, then the pain came back. I had a total of three MRI's in a year's period. Had one of Sinus, then second was with contrast of the brain, then a third was a 3D brain w/contrast. The first scan was to rule out a sinus infection that everyone said I had. What no one every told me was I had a bone spur up left nostril pinging my Sleuder;s nerve, and I had a deviated Septum. I had surgery last year to fix these problems. I acquired severe pain in my tongue now. My doctor told me she doesn't know how to help me, so she referred me to a Arthritis doctor. The Arthritis Dr. said they always get the patients when Dr. can't help you. I have finally have an appt, next month with OHSU pain Management Clinic. I saw Oral surgeon a week ago, to rule out wisdom tooth again. He gave me an injection in my upper left side back behind my molar for me. I was pain free for five days. I haven't felt that relief in four years. I get you on the feels like you want to pull your teeth out. I have tried Tramadol, doesn't really cut any pain. Percocet works on occasions, I just finally got Dr. to prescribe Hydromorphone 2mg, it helps relieve the pain, I can only take when I come home. I do find I have to go back and forth with the different pain meds to have them work. I take 2400mg a day of Gabapentin, and 600mg of Oxcarbapezine a day. My saving grace pill for me is Baclofen. I have been on both of these meds since 2012. Took me a year in a half to get Dr. to do something about my intense pain when this all began. I work every day, I find acupuncture works great for relief. I'm anxious for my appt next month with pain mgmt. I will let you know what they will do. Chin up, we all feel your pain.
Who prescribes the Lidocaine mouthwash for you?
justjane37 said:
Hi Foxboro,
So sorry you are in so much pain. I agree with Smily about triggers. It really takes some time to figure out what yours are. Unfortunately, you will start seeing patterns with your attacks. It could be touching a certain place on your face, head or in your mouth. It could be brushing your teeth or having a shower. It could be wind or cold air. Some of us don't really have physical triggers. For me it is stress, lack of sleep, weather (barometric pressure) and cold air to name a few. Anxiety can make an attack worse. I know that is a catch 22 but you need to try to stay calm.
And usually pain pills of any kind don't work. Tylenol, Advil, Naproxen and heavier prescription pills too. That is why this can become unbearable. It is sometimes hard to find relief during an attack.
I find hot compresses help--a hot water bottle, hot bath or microwavable heating bag. Also if you have pain in your jaw or cheek capaicin cream can help or Voltaren Emugel cream. Some people also use Lidocaine cream or gel...there is a kind of Lidocaine mouthwash that can be prescribed that numbs your mouth. All will provide some temporary relief. I have heard of toothpaste and mouth wash for sensitive teeth can help if used everyday.
The meds do take time to work and to increase dosage too. You have to somehow be patient with that. For me, my TN is different every day. I have high pain days and low pain days. I hope today is a low pain day for you. I also try to sleep when I am in pain...it tends to reset things.
I know what a frightening and overwhelming experience this can all be. I am not far from you at all. If you want to meet for a coffee or have a telephone conversation please let me know. For me it is late at night that is the hardest. Everything is still and quiet and there is no distraction from the pain. I mean it. Get in touch with me. You have my email and I am going to email you my cell number. I know we are strangers but it is all these amazing people that get me through the rough times. Sometimes you need to talk to someone who understands.
Jane
Who prescribes Lidocaine mouth wash for you?
My doc, gp, was able to prescribe the mouthwash for me. I did not even need to go in as she just called it in for me. It does make a difference for the tongue pain for me and the warm pack helps a bit for the jawline. . I hope you find relief soon. I am also struggling with day two of incredible pain.
labhunters2 said:
Who prescribes Lidocaine mouth wash for you?
I have never used it but I see people talking about it. I think it is primarily used for burn victims. Your GP or neuro should be able to prescribe it.
labhunters2 said:
Who prescribes Lidocaine mouth wash for you?
The anti depressant meds have worked the best for me..for treating my burning mouth and teeth/face pain and ear pain.
Dear fellow members, I can't tell you how important it is to have this kind of support. Our Dr.s are great and know what they know, but there is nothing quite like first hand experience to learn from ! My family is very understanding and supportive, but you have and are living this through good and bad times. Thanks for all your responses, just knowing you are there for me and the other members helps to make some very difficult times bearable.
My Neuro. actually called me on a Saturday because I wanted to get right into the Tegretol 2x a day as 1x just wasn't doing it.( we were are migrating from Gabab. to Tegretol) He said on day 3, providing I can tolerate it start upping it to 3x a day. He is ok with the 2x a day until then. He also suggested I still take the Gababpentin mid day as a bridge. Yuck, I won't be doing that again it made me really nauseous. 2 more days to go and then I'll be on Tegretol 3x a day. Never thought I would be so happy about upping a drug dose!
Just waiting to hear when my first MRI will be. Stay well everyone and courage.
Demand your doctor calls in RX lidocaine mothwash!
I agree with the lidocaine mouthwash, I also use it. I also have a heating pad to wrap around my face.
BTW - The heating pad I use is actually made for the neck and shoulders. Because of it's shape, it is easier to wrap around the face than a square one. It is made my Sunbeam and I found it at my local Walgreens.
I can’t sut under a hair dryer. I found a hairdresser that wirks around my condition.
I agree… It will take time to figure out what sets pain off.
Pain relief is different for everyone. Opiates work for me. I understand for some it does not. I am on gabapentin and we are adding topamax to the mix. I personally can’t tolerate tegretol. But for some it works great.
Others get relief from less traditional methods.
The most important thing I can tell you in these early days is to keep a pain journal so you can figure out what triggers your pain. That way you can figure out if there are work arounds.
Posture was a huge thing for me. I spent a ton on a new chair that eased some problems. Cold wind/air is another. I never leave the house withiut a scarf.
Pain in my teeth and gums usually lasts for hours. Make a comfy place for you at home. A sanctuary where you can be still and quiet when it happens at home.
Hugs to you. I am so sorry you had to join this club.
After 21 months of severe Upper Branch of Trigeminal Nerve Pain ( PHN ) after Shingles , it is finally 95% less . I changed my DIET , No Sweets , Very Little Coffee , What enabled me to sleep was resting a Cool Ice Bag on my forehead and top of skull on affected side ( left ) . I Drink No Less than 90 ounces of H2o Daily , ( flushes out toxins ) which I believe helped enable affected Myelin Sheath ( Nerve Casing ) to regenerate , I make sure I take my B-12 daily along w/ a Banana ( Potassium 100 calories ) . Since staying on this Diet of needed water , 3 fresh vegetables w/ supper , fruits , less bread , I am " healing " finally . Slept last night without Cool Bag on head for the first time in 19 months . Avoid as much stress as possible , try to relax if possible . I've been where you are . Gabapentin only helped for a month , Lyrica was " horror " for me , I weaned myself off that . A Lidoderm ( Lidocaine patch cut according to size helped me the most ) also I have had epilepsy for 40 years and I believe Dilantin ( Phenytoin ) gives me relief 100mg 3X daily . I would perhaps try a cut strip of Lidoderm above jawbone and just beneath it to encase the Nerve near your teeth , try it . 12 hours on / off , it may work best at night . I used my Lidoderm 8 pm to 8 am above left eye ( forehead ) , it fell off several times so I reverted to putting a ban aid over it to stay in place .