I have been reading posts since I was diagnosed in April with atypical TN. At first my symptoms were knife like,pains that lasted from 2-4 hours in my jaw, face and teeth.
First dr put me on Neurontin and Tegretol and that seemed to help.
But then the neurologist changed those meds to Trileptol and I ended up in the hospital with drug reaction.
So back on original drugs, But this past week things have changed. Now I am getting pains every time I try to eat.
Will see a new neurologist in 2 weeks , but am looking for any advice.
Try to eat soft foods and chew tiny bites. Is this typical?
My first post to,this group.
Hi, Libby's Mom, and welcome. The only thing I can contribute is that EVERYTHING is typical. Some have a rapid progression (myself included), others have the same thing going on for years. Some even get remission. It is just highly individual. But, I think it is cmmon to have periods of higher intensity than others. I know I do, and I have both types and all branches affected, soI like to see myself as somewhat of a specialist, ha ha.
In the meantime, strategies are your lifeline. But you got to eat.
Can you drink? There are these high calory drinks in the pharmacy that they give to the elderly, which are very nutritios and balanced with generic multivitamin etc - not like your average milkshake. You can also make soups (use proper veg and broth) and blend them with a stick blender. Make them thin and drink them. Smoothies - also thin, and add some protein powder and/or natural yoghurt.
If you can use a straw, make everything as thin as possible to fit the straw. If you don't like cooking, buy ready made, thin it with water/milk/juice etc, and take some protein powder and multivitamins alongside.
Sorry that you had such severe drug reaction. Sad to say, that too is fairly typical. :-\
Wish you the best of luck!
I’m so grateful for your help and advice Red and Tineline. Especially when I am in the midst of a long pain episode- it helps to know there are friends out there listening and responding. Can’t thank you enough.
Yes libby’s mom, I can so relate…I do have my good and bad days. Rt now I am n my good days. But we do have to eat and this will soon pass. Yes eat food that u can even smash or blend I would smash broccoli and mash potatos or coli flower and most veggies and just eat with a spoon to the opposite of the pain drink hot water or tea with a straw. The straw is now ur best friend…I do wish u the best. Hope this helps…let the meds kick in. I am now taking the med u had a reaction to and I am doing well with it. Try chiropractic as well maybe someone who works with the nerve or the face…good luck keep n touch
Hi Libby's Mom,
I have periods when eating is difficult and painful. For some strange reason, I even have a tooth that always feels like it needs a root canal (it already had one). When I have these periods, I just eat soft foods and if that's too much, I drink protein shakes and treat myself to milkshakes if I can tolerate the cold on that day!
We all to figure out ways to outwit this crazy thing and find ways around it's unpredictable ways. That's just one of the many reasons why this group is so great...., they can offer so many suggestions!
I have also noticed that this occurs more often later in the day, after I have eaten and talked all day and "aggravated" the area. My afternoon/evenings are my worst. I think that resting my facial muscles, nerves, etc., while I sleep, helps to calm things down a bit and I am less likely to have pain first thing in the morning. So I would suggest going for nutrition in the earliest part of the day if the find you experience the same.
Make sure to let us know how you are doing.
Cathy In MD
Dear Cathy, Thank you so much for writing. And especially for mentioning the issue with teeth. I too have thought it must be an abcess or something, as the pain in my teeth is so severe, but I had been to 4 different dental specialists before being diagnosed. And I have read that that is quite common.
Mornings are usually my hardest, although this week, the episodes are happening on and off all day long. I will start getting some protein shakes, although anything too cold or hot is not working now. There are times when just moving my jaw or beginning to speak can trigger it too.
Has anyone ever found a massage specialist to be helpful? Someone suggested that to me. I'm trying to learn to keep going thru the pain, as sitting in a chair like a lump isn't working. But it is challenging.
Any of you who have suffered for years can give advice to those of us who have just been diagnosed. Will see respected neurologist next week, and will be interested to hear his advice. Keeping pain journal too.
Thank you to all !
Hi again,
I'm so impressed with how much you are working on finding ways to work through your particular episodes. I have read that room temperature drinks are suggested for TN sufferers but I am still not able to do it. I like my drinks a little cold or a little warm :) I often feel that my teeth are on fire or that there are electrical impulses going through them. I find that a heating pad applied to my face helps with that.
As for trying to learn to keep going through the pain, I'm not entirely sure what you mean but it is true that the mind can only be fully focused on ONE thing at a time. So, sometimes, being very busy can be helpful and can truly help you get through things. BUT, there will be time when the pain is greater than your ability to "keep going thru the pain", and you have to allow yourself the time to do whatever is necessary to calm the Monster. Such as the heating pad, or some deep breathing, whatever you find works for you!
I have had this for over 30 years, with several remissions. It seems that in my case it came back in full force after Chemo (I have read that hormonal changes can set things off and I was put into instant menopause from my Chemo). That was 12 years ago and I have this disease 24/7 but it is under control for the most part due to a lot of medications. Mine was caused by having my wisdom teeth removed when I was 19. The oral surgeon hit the nerve, and I have had numbness in my face ever since.
Anyway, enough about me.... you may find some relief from massage because your body is likely in a state of alert now. I'm sure that your muscles are tight, which in my opinion can set off an attack. I have problems with my neck and often feel that if my neck acts up, it is the cause of a flare up of my TN, which then leads to a migraine for me. If you have insurance that covers it or can otherwise take care of the cost, I would certainly recommend it.
It is not unusual for talking to set TN off. If you can't talk, don't. Give your body a break, at least until you see the neurologist. If you haven't already, try gently applying some moist or even dry heat to your face to see if it helps.
Remember, YOU WILL GET THROUGH THIS! WE ARE ALL HERE TO HELP WHEN YOU NEED IT!
Take it easy,
Cathy In MD
Hi Libby’s Mom,I also am sorry you are having such bad pain,and praying that it will stop or at least let up and give you a break. I have had tn1 for 25 years and tn2 for 20 years. I have learned to like mushy food (lol) it is a joke in my house, I have trouble cooking for everyone else without turning everything into mush without being reminded 10 times! Hey, they are all getting pretty use to eating like me by now and MOST don’t complain to much.(LOL) Mine is also in all three branches and 3 and 1/2 years ago it moved to my tongue and down my throat, it took me untill last nov. to find something that at least would sooth my throat if even for just seconds. Strawberry boost, I didn’t care for any of the other nutritious drinks,but that one I like and for some reason is also very soothing when my throat felt like it was on fire.I found MY BEST HELP FOR TN1, TN2, and TMJ, in GALLIXA (like I said, my help,and if wanting to read more about it,just type gallixa in the search bar) and feel free to message me. Wishing you painfree days ahead,dawn
Hi Dawn,
I saw your mention of Gallixa. Can I ask, how long have you been using it? Does it require a script from the doctor? I am actually going to the doctor tomorrow and would love to ask him about it.
Thanks for introducing it, this is the first I have heard of it and I would never try something without someone telling me they had tried it and found it effective.
Cathy In MD
Hi, Libby's Mom—
Sorry to hear of this onset, and the drug reaction. As for eating, I too, use a blender to make protein drinks mixed with veggies and fruits. Costco sells an organic brand at a reasonable price. Can only eat soft foods, unless it's a good part of the day that will allow for chewing–this window comes once a day, usually. I use the time released Neurontin, called Gralise. It's a name brand, but it lets out a bit of med every hour or so and gives a constant relief. Then there are others that are rotated, so that my body doesn't get used to them.
I'm reading a book called The Power of the Healing Breath, which is AMAZING! For ten minutes each morning I practice deep breathing, and breathe as deeply as possible throughout the day, in a mindful way. It's helped to keep my body relaxed and my mind alert. Exercise each day for 40 minutes to 2 hours depending if it's weight lifting or walking—gives life-giving,faun relieving endorphins (I am officially an endorphin hog!). Massage routine from a physical therapist focused on TMJ helped the pain immensely in the first few years. Heat or ice on the side of my face or head are VERY helpful. The ice/heat are sensations that travel up to the brain faster than the pain travels, therefore it provides comfort by putting the pain on the back burner. Exercise, deep breathing, massage, ice and heat all play a big part in self care. Someone here mentioned that we need to be a person who exercises extreme self care with managing this monster. Take care and message me if you'd like :-)
I had to go through a soft food diet phase when I was diagnosed with TMJ (which was actually neuralgia)
Fruits/veggies: Smoothies, pureed soups
Grains: Oatmeal, congee, mashed potatoes, mashed yam…you can mash most carbs
Protein: Soft tofu, egg, most fish, slow cooker meat, nut butters mixed into oatmeal, protein powder in smoothies
Desserts: Most are soft but of course practice moderation 
These foods all require little to no chewing. Those replacement drinks get tiring after awhile. I also get more pain after extensive chewing, but right now I’m in a remission sort of phase so I don’t have to be as careful.
Hah, I totally forgot to mention the Norwegian craze for porridge. Not stodgy oatmeal, but silken porridges of various kinds with various toppings (most often butter, sugar and cinnamon). There is a lovely rice-puddingy version, but other types such as wheat porridge, are really smooth, and can provide a nice treat if you want something rich and sweet. It may sound dreadful if you consider yourself past baby food, but we eat porridge almost as an institution. Many Norwegian families eat it every Saturday for dinner, combined with cured meats and flat breads. If you feel like trying something new, you can find some recipes online. search for "Norwegian velvet porridge" :) (Sorry, my e-reader doesn't allow me to paste links.)
I do try to exercise every day, but really appreciate your suggestions about deep breathing, and using either hot or cold to relieve pain. Haven’t tried that yet, but definitely will. And will look for,protein drinks too. I want to ask my dr. Too about the time released Neurontin. Sounds so promising.
My hardest times are waking up in the morning, as usually the pain episodes begin immediately. ( too long since last dosage is my guess). But I,m not good about setting an alarm for next dose . And will look for the book you mentioned. The TN members have been amazing since I posted my note a few days ago. Thank YOU!!!
LyndaS said:
Hi, Libby’s Mom—
Sorry to hear of this onset, and the drug reaction. As for eating, I too, use a blender to make protein drinks mixed with veggies and fruits. Costco sells an organic brand at a reasonable price. Can only eat soft foods, unless it’s a good part of the day that will allow for chewing–this window comes once a day, usually. I use the time released Neurontin, called Gralise. It’s a name brand, but it lets out a bit of med every hour or so and gives a constant relief. Then there are others that are rotated, so that my body doesn’t get used to them.
I’m reading a book called The Power of the Healing Breath, which is AMAZING! For ten minutes each morning I practice deep breathing, and breathe as deeply as possible throughout the day, in a mindful way. It’s helped to keep my body relaxed and my mind alert. Exercise each day for 40 minutes to 2 hours depending if it’s weight lifting or walking—gives life-giving,faun relieving endorphins (I am officially an endorphin hog!). Massage routine from a physical therapist focused on TMJ helped the pain immensely in the first few years. Heat or ice on the side of my face or head are VERY helpful. The ice/heat are sensations that travel up to the brain faster than the pain travels, therefore it provides comfort by putting the pain on the back burner. Exercise, deep breathing, massage, ice and heat all play a big part in self care. Someone here mentioned that we need to be a person who exercises extreme self care with managing this monster. Take care and message me if you’d like
Libby’s Mom, hi again, sorry I wasn’t able to get my tablet to work during the night. I wanted to friend request you, it won’t let me do that right now, but I would love to chat with you.When I went to your page to read your story, I found you are probably a half hour from me,I live in battle creek! I know you said you see a neurologist today, no gallixa doesn’t take a script. I would like to chat with you in private,please friend request me if you would like.I would love to tell you how this cream that I had NO HOPE IN saved ME from taking my life because of all the pain I was in. I would also like to know who you saw today, where you went and how it went. I am praying you get some answers today! dawn
HI Dawn, My goodness what a small world. Can't believe you live so close and would love to talk to you in person, but I can't seem to be able to find the friend request button again! Can you send a friend request to me?
I don't see the new neurologist until next week, and his name is Dr. Lee. At the Brain and Spine Institute at Borgess.
A friend , who is a PA, has great confidence in him, so I'm keeping a pain journal and a list of questions for him.
So hoping we can talk in person eventually.
Hi Libby's Mom,
I had a period a few weeks ago, where things were so painful I could not eat, or drink, or even lick my lips without crazy pain. I had not experienced that before and even taking my medicine was crazy painful. I feel I can tolerate a lot of pain, but those few days I seriously could NOT even suck through a straw at all. I finally got a prescription from my doctor for a lidocaine mouthwash. While it tasted terrible and hurt like hell just to take and swish around and spit out, it gave me a few minutes of relief to be able to get some food in. I would prepare a mix of high protein soft foods like scrambled eggs, or ensure, yogurt or a shake (but sometimes too cold) and would have them all ready to go, and then do mouthwash and then eat fairly quickly taking care that I swallowed carefully as the lidocaine also impacts feeling in the throat so choking is a hazard. I would get those meals in 2-3 times per day, and coordinate when I took medicine also, and finally i physically felt better because I was full and hydrated. In three years of having TN I had not experienced this and it was such a relief to have an option to eat. Good luck with your eating..and be sure to ask your doc for something like this to get through the really difficult times.
Yes, the Lidocaine mouthwash is an excellent way to get through periods like this. I also use it when my teeth feel like they have electrical currents going through them; it is very effective. Great thinking eem!
Cathy In MD
Cathy in MD,I am so sorry I thought it was Libby’s Mom asking about the cream gallixa.I should of been paying more attention.If you are still wanting to know about please friend request me and we can chat about it if you would like. Dawn
I often go through periods when I can’t eat due to the pain. My husband will Magic Bullet blend meals for me. It’s kinda gross when I think about it, but otherwise it’s basically Ensure. Sometimes, that’s all I can manage and that’s fine too. I just know what my limits are, like no sandwiches/burgers, I have to cut up fruit rather than chomp into an apple, etc. Just part of the whole package.
A huge hug and thank you to all who have taken the time to write and especially appreciate your suggestions concerning how to live with TN. I read each one of your letters, and am taking notes . Some of the items I will discuss with my neurologist later this week ( a new dr.). And other ideas will be used as needed. Have had 4 days of calm, but feel some symptoms returning tonight. This group is amazing and am so glad I found you.