Thank you for the welcome and for the arena to learn, vent, and support others. I have been on this journey for a few years. First with months of ivs , feeding tubes and surgeries with my osteomyelitis and now with my TN. I have been in constant type 2 pain for the last month and I am frustrated and suffering through quite the pity party. I have been on soft foods for a month since chewing is a trigger for my pain. So between the pain, lack of food, improper nutrition and fatigue I am a bit of a mess. I am currently on prednisone, baclofen, tegratol, and gabapentin. We are reducing the last two since I have hit my limits with side effects and cannot take higher dosages. The plan is to wean off while the prednisone jumps in to help with the pain then increase my dosages and add dilantin. I am currently looking for any tips to help fight the pain (not heat, it is also a trigger and ice does not help) and also any tips for nutrition tricks. Thanks for allowing my vent
Liligirl
I should add that the majority of my pain is in my muscle, bone and teeth (upper and lower). Oragel and lidocaine only help with my teeth and only for a few minutes. My massater muscle has been removed twice and scraped of scar tissue but there is ossification (due to the bone infection). My muscle area is the area I have the hardest time coping with.
What a rough journey! I hope the prednisone and dilantin helps. As for the food/nutrion, it was recommended to me today to try Garden of Life RAW. I found that my local Herb Shop sells it. It's a bit on the pricey side, but it looks like it's nutrionally complete. I've been on baby food since Wednesday, and I am hungry! I'm also getting grumpy, so price doesn't really matter right now. I may go with almond milk, Greek yogurt, and juiced fruits and vegetables, but I need something to chew, and that isn't an option for me either.
Hey Burn,
It is nice and it sucks to find others in the same boat isn’t it
Grumpy doesn’t even begin to cover it. I love red meat and haven’t had any for a month. I also understand the need to eat rather than slurp. I was on feeding tubes for 4 months in the past and I swear I have PTSD (LOL)from not being able to eat. Chewing and talking are triggers for me though these days I am in pain 24-7. I know I need to accept this and adjust my life so I can be as healthy as I can and hopefully learn to properly deal with this. In the past I always had a good day or two mixed in with the bad which made life much easier. I guess we need to learn how to adapt and keep up as much normalcy as we can. I was also looking at the post on the Garden of Life but I guess that means juicing (and more undesired weight loss). I have been eating scrambled eggs, thai noodles, pancakes, mashed potatoes etc. but I am sick and tired of it. Somebody wrote about cutting up food in really really small pieces. I am thinking of trying it with real food but I am thinking that it would be like swallowing without chewing (probably not too satisfying). Maybe way overcooked veggies like cauliflower? but I guess that is like the baby food eh?
No milk for me! Spicy food either. I love spicy food :[
Lili, I remember years ago when my dad had his teeth pulled, he ate cube steak that Mom would cook, and cut up into tiny pieces and put in the blender. I suppose that would work with mashed potatoes and gravy, or overcooked rice that you could mush up, or maybe a meatloaf mashed up in the same would work. I had 2 very soft scrambled eggs this afternoon mixed with baby oatmeal, but grits might have worked. Slurping is right. There's no getting away from it. I may try using my juicer, and mixing vegetable pulp with mashed potatoes and some vegetable broth.
thermotronica: I miss my spicy food too, and Chili's...Lord, what I would give to have some Southwestern wraps and bbq chicken! I use powdered milk for my dairy. Room temperature milk is what I use for making my shakes.
thermotronica said:
No milk for me! Spicy food either. I love spicy food :[
I would recommend a wheat free diet. Following the Wheat Belly diet has allowed me to lose weight and feel much better. I don't think I can show a link but you can find it on line.
I have a doctor appt in 2 weeks to evaluate my epitol. The bad thing about this drug is not feeling pain. I had to have a tooth pulled due to not knowing it was falling apart. Once I felt pain, it was too late.
Having TN has been an interesting journey the last year. I live in MN, so this last winter has been brutal. The cold bitter winds hitting my face made some nights unbearable.
A product I put on my face when I have pain has been helpful to mask the pain. It is Badger Balm ointment.
You will find many helpful posts to help you through this.
All our cases are different, and wow, anytime I see "surgery"..."removal"...
I wonder if I can relate.
No matter...
- I love our Vitamix..cost a fortune...but allows me to stay on the goal for better nutrition. Pretty simple ingredients: organic/og baby kale, og ginger root, coconut water, and nortic ? oil spooned on after the mix. Another combo: coconut water, og cooked sweet potatoes, og walnuts, og cinnamon, and og ginger root. Just two examples, but your imagination is the only limit. My wife uses og avocados plus the kitchen sink.
- As probably already mentioned: cut out sugar and what has or produces sugar such as potatoes, tomatoes, bananas, grapes. etc. And, cut out wheat...and possibly ALL grain and dairy. I'm a huge food person so I was very resistant. Do it and see what happens. At least one month before you have a reality test.
- Sleep! Go to bed early if that's what it takes. REad up on sleep hygiene.
- Meditation. Only makes a difference if part of a routine. I'm getting into bio feedback as way to structure the same behavior. See heartmath devices. Look for a certified biofeedback provider. My insurance is helping out on the sessions.
- Exercise. This is a tough one. Walk, stretch, do isometrics....another routine. Might look for a patient PT specialist. Again, my insurance helps.
- Hobby....something to distract the mind. I can thank my wife for getting lots of tv/movies. More money to make it happen but roku, amazon prime...provides a ton of choices. Multi season shows provide a lot of content, and much of it is superb. Better than tv, though, is something that one does. An idea as old as basket weaving. Keep it simple in order to avoid frustration.
- Medical marijuana...helps me get to sleep, less is more, other wise I can get depressed.
- Social interaction....my biggest weakness. I tend toward being recluse. Ironically, I like to talk but it does hurt to do so and no one is going to understand. But, we must have people contact.
- Lastly I will gently say that there are pain suppressing drugs that can make conditions worse. My own fallback/?weakness? is lorazeapm..2mg everyother night. The price I pay is a rebound effect on the nights i avoid in order to not build up tolerance. A good neuro guy would help..and I'm yet to find one.
I hope this helps...a lot of good info on this forum...Personally, I try to limit my involvement. Otherwise, I can loose too much time sitting at the computer.
I have been using lidoderm patches cut to a smaller size on my face to stop the muscle spasms. It usually takes about two to three patches before the charley horse spasms in my face subside. I wear the patches for twelve hours a day. The down side is they do cause heart burn and a certain amount of agitation but they help with the muscle pain. Methylcobalamin B12 in lozenge form also have helped with overall feeling better-I use 2500 mg per day under my tongue. This is also the type of B12 the body uses to help with repair of mylein sheathing on the nerves. Best of luck-know that you are not alone in this journey.
It's too simple, but works for me when I can't eat. I use Ensure, it definitely gives me a boost in feeling better and fighting the feeling you get with little nutrition. Sure understand the frustration and sounds like you have a lot to deal with, hang in there. I hope they find the right combo of meds for you. Pity parties, we all have them from time to time, be very good to yourself and know we are here and care.
Betsy
Sorry you are going through a tough time. you need your protein, Have you tried adding some protein powder to smoothies etc. Hummus is great too, it's soft and filling. You can also make a bean hummus with white beans. Can you eat noodles? make or by some pesto. make some potato or crab cakes and chop everything very, very fine,and bake instead of fry. They will be softer. If you can eat these things they will be healthier and much more filling and help keep your weight up.
I use a rice bag for heat but sometimes I can't, it hurts too much. I will then switch to moist heat using a hot damp washcloth held lightly over my face. Another way is a heating pad tented over your face, not touching.
Hope these are helpful.
Wm Phillips, Thank you Thank you Thank you,
I have the sleep covered and unfortunately the med Mj just left me high and in pain (LOL) so I use vicodin instead but I refuse to take them at work. Your other suggestions are wonderful and I am definitely going to try them. I am going to improve with the sugar, dairy, exercise and social interaction. I will also give the meditation and your food tips a good try. I am sick and tired of feeling sick and tired and have realized that this is my life so I need to take active steps to try and reclaim it. Thank you for the great advice. Also I am very lucky, my neuro greets me with a hug, listens to me, and has never said there is nothing else to be done.
Awesome advice above!! The only thing I would add is seeing a NUCCA chiropractor, has helped me a ton!!
Also MVD does help type 2 TN, had one in Aug… Type 2 symptoms 95% gone. Good luck to you!
Kathy
I’ve tried cold laser therapy with moderate success, it was the only thing that gave me hope during a really difficult time. Theralase is offered by many chiropractors and by some pain management therapists -it’s completely noninvasive . It’s worth a shot if you’ve tried everything else.
Loving the advice/suggestions from everyone.
Thanks everyone. I have the MVD surgery done about 4 weeks ago and am not doing so great. I had been wondering about nutrition. I will try some of the things suggested. Linda
Vitamin B12 is important for us. Also D3 and I take magnesium before bed to aid sleeping.
I am ordering my vitamins today. Everbody has given fantastic ideas. These tips are exactly what I needed. Keep them coming 
Hi There sorry to hear your troubles. The only drug that has helped me a little is Escitalopram which is an antidepressant, but it is still hell-on-earth, but it does take the edge of the pain. The only other thing that helps me is laying on the bed with the quilt over my head as the heat and humidity helps.
Hilly