I had typical TN and never had any triggers until 2 weeks before I was scheduled to have MVD surgery. It must have known that we were coming after it. During those 2 weeks, I too could not put any solid food in my mouth without having an immediate severe attack. I could drink fluids no problem. How do you survive when you can't eat anything solid? Both my GP and Neurologist told me that there were 2 options. 1) be hospitalized and have a feeding tube. 2) drink at least 10 bottles of Ensure or Boost a day. I asked about eating baby food and both said NO do not do that, An adult can not survive on baby food. I selected option 2 and decided to survive on Boost. (Could not tolerate the taste of Ensure) Get the Boost that has the extra protein. Protein is what you need most. Maintains muscles etc... It was easy for me cause I just kept telling myself it was only for 2 weeks.
Had my MVD surgery 2 weeks later and have been attack free for 3.5 years. My Neurosurgeon was very experienced doing MVD surgeries and he told me that I had "multiple blood vessels tangled up with the nerve." His words exactly. He said it was one of the most complicated cases he has seen.
I thank him and god everyday now because I am pain free.
Liligirl, I think I have found an easy meal for fish! I love salmon, and Mom used to make cheese balls all the time, so don't know why I didn't think of this sooner!..Salmon pate! Or, tuna, or crab! And my mother just interjected, "But isn't cream cheese fattening?" Oh.My.Lord. She doesn't eat enough to fill a bird, and with what I've been having to eat, I don't think fat is going to be an issue.
Ken, I'm glad you've finally gotten relief! Did the surgeon give you an idea of the success rates for MVD? I have tachycardia, so I'm not eligible for MVD, or I'd be asking my neuro for a referral now, rather than try to put up with this pain for any length of time. I also have a lumbar puncture coming up next week to verify if I have MS, so there's that too. I can't imagine having to drink that much liquid every day. I get hungry, and I manage to get down mashed potatoes with finely ground meatloaf, or small pieces of chicken or even boudin sausage cut small enough so I don't have to chew mixed with mashed potatoes, or in gravy. The baby food got old in a hurry, although the small jars of meat could be added to my milkshakes to help up the protein level. Probably the worst source is beef ravioli. I've been eating an entire can every day just for the carbs since I'm not able to chew bread without agony. I suppose I'll have to look into measuring food to make sure I'm getting enough, or google a food chart! I'll definitely look into additional sources. I may be better off buying and boiling down a whole chicken until it falls off the bone, and do the same with roast beef.
-burn baby,
fantastic idea with the fish cream cheese mixture, I am actually excited. I was also thinking of some type of fine, mushed meatloaf type concoction. Refried beans is also a good source of protien. Thai noodles are much easier to eat than italian pasta.
Liligirl, you could substitute Greek yogurt for the cream cheese to make it softer. I love dill or rosemary on my salmon, so I'm looking forward to making a batch! The neighbor gave me 5 dozen eggs today too...Almond-milk shakes with a raw egg and a scoop of tinned pumpkin or sweet potato would turn that into a nice little meal! I've got a canister full of orzo, and mixed that with tinned roast beef and gravy for dinner last night. Mouth feel yum! The meat was soft enough that I didn't have to worry about chewing. I may have to order the Thai noodles online. We don't have a local Asian shop here, and that's one product the stores don't carry unless it's packaged in with a mix of stuff I can't eat.
the Liligirl said:
-burn baby, fantastic idea with the fish cream cheese mixture, I am actually excited. I was also thinking of some type of fine, mushed meatloaf type concoction. Refried beans is also a good source of protien. Thai noodles are much easier to eat than italian pasta.
It's strange how different we are with our pain and our triggers. Eating does not bother me usually and when I am having tongue pain (which is my most incessant pain) frozen treats are my best friend. I eat popsicles by the box full.
Anyways...I'm sure you don't want to hear about someone that can eat. The real reason I replied is that my mother has been on a completely liquid diet for almost 10 years. She is also sensitive to temperature and acidity in food.
-Ensure everyday. I think 3 times a day
-milkshakes/smoothies with silken tofu for protein or added in protein powder (you have temp. sensitivities so not sure how you can modify that
-homemade soups of all kinds from scratch blended up--she has a "bullet" or a "magic bullet" you can buy it at walmart and it is just a really good blender
-mashed potatoes and gravy. She sneaks other veggies in mashed up like sweet potatoes, carrots, etc.
Jane, I think this disease proves just how different everyone is. I tried a piece of fresh, homemade banana bread this morning with a soft fried egg. I ate them with tears in my eyes. I have lost my appetite. I have always had food issues, and this just makes it worse. Mashed potatoes and gravy with English peas, lukewarm decaf coffee, juice, and water have become my "fillers." I'm going to toss some lentils into the slow cooker so I can have something for dinner. How do you "get on with life" when something so painful stops you in your tracks.
I wish I knew the answer to your question...and I'm sorry that you are going through this. This disease is frightening and very isolating. Being in chronic pain is one of the hardest things I have ever dealt with. We are all very different but we all understand each other :)
I have Type 2 bilateral and share most of your locations of pain. Isn't the tongue the worst? It drives me mental. I read over your profile and I hope that you are able to find some relief soon. I have been where you are pain wise a few times and it takes everything out of you.
Hey Burn Baby,
Thinking of you bc of my insane need for solid food. I thought I would pass along my latest creation. I order rice, refried beans, sour cream and mix it up or take it home and blend it in to a lovely mash. I actually had 4 days of milder pain but still no solid food. Now the real pain is back, type 2 and the icepick sensation of type 1. Aggghhhh! No steak for me in the future.
Lili, I think you may be onto something! Avocado in that mix would be the closest we could get to a Tex Mex meal! I've been mashing up macaroni and cheese with baby jar ham and peas, or topping tiny pasta with fine ground beef and gravy. Oh, what I'd do for a steak, or tri tips and gravy! At least the insides of biscuits are still soft enough to get my bread craving fixed.
Glad you had a break from the pain for awhile! Were you doing anything different that maybe caused them to ease off? I have caught on that bending over, or even turning my head a certain way is a huge no for me now.
Liligirl said:
Hey Burn Baby, Thinking of you bc of my insane need for solid food. I thought I would pass along my latest creation. I order rice, refried beans, sour cream and mix it up or take it home and blend it in to a lovely mash. I actually had 4 days of milder pain but still no solid food. Now the real pain is back, type 2 and the icepick sensation of type 1. Aggghhhh! No steak for me in the future.