I looked back at my journal I have been keeping for the last month. My trigger is quite simply either chewing or eating in general. I cannot chew. Something about the mechanism triggers something. It does not need to be hard foods alone, breads will do it.
Is this familiar with anyone else?
For the time being, I am going to get some protein powder for shakes, some baby food, some soups, some yogurts, and just swallow all my nuitrition needs.
Any one have any other suggestions for food? Any other tips for how you handle things if this is how your pain is triggered?
Sorry to read you are having this problem Lisa. When my pain is doing it's worst I can barely eat or drink, even a slight sniff will start a spasm of pain. I have been reduced to putting tiny pieces of chocolate on the end of my tongue and allowing it to melt. One thing that can help me is to drink with as straw. As my pain gets stronger through the day, I try to eat more at breakfast and taper down through the day. I yearn for a steak! It's all I can think about when I dare not eat meat. When well managed I rarely want it!
yeah, so you would think I would learn.... apparently not. I apologize for inadequate word choices and or/grammer misspellings, as the pain meds are definitely leaving me stoned. But I ate a few peanut m & m's my favorite. I figured, what could 4 do.... yeah, um, level me.
when my jaw flares up with a constant pain with any movement I eat cream of wheat for breakfast. I cook it very runny and put milk and sugar. I make it so I can swallow it without chewing. It takes me a long time to eat.
I'm going through this pretty bad myself right now. I drink Ensure protein drinks. Everything I drink has to be with a straw and the straw has to be close to my throat. I use my throat muscles to drink because it hurts to drink with any of the muscles in my mouth. For breakfast I eat oatmeal. Everything I eat I eat with a long skinny teaspoon. I'm not able to chew anything so I make sure I can just swallow it. I can't have anything touch my right teeth. Never fun. So I know how you feel. I hope you can eat normal again soon.
If you need flavor, baby food fruits can be mixed in with the oatmeal. It's actually quite tasty. I also make protein shakes with the baby food too. My doctor said this was an excellent way to add calories and nutrients we need.
Scott, thanks for the tip on the cream of wheat... I will have to pick that up... I do like that anyway, so that would be good.
Mine is triggered with eating as well. I try to eat when Im not feeling the tell tale pressure in my face ( usually before an attack or strike) so my eating habits are a little all over the place at the moment. I find protien shakes 'sipped lightly' through a straw is usually ok, but not always. In fact I had such a bad time with TN the other day that I realised I had not had a drink all day - this cant be good :(
Weirdly enough, I am definitly eating less yet not losing any weight? hmmm wonder if this is the medication?
Racheal, if you aren't losing weight, it is likely that your body has gone into starvation mode and is hanging on to everything you have. Eventually you will break through that plateau. I know that I am losing weight. Which for now is okay because I had about 20 to lose. After that I am going to have to find something that will increase the calorie level. Some protein shakes are 300 calories and if you add milk, you are looking at 400 or so, which would be a full meal. My protein shake right now is only 110.
Lisa, don't even apologize for one minute. If I did not log in with Google you would think I was writing Martian. I need the spellchecker they automatically provide! And we never learn, we all want some of favorite food, why wouldn't we?? I hope you are soon able to scoff hundreds of M&M's again.
Lisa (iamrite) said:
yeah, so you would think I would learn.... apparently not. I apologize for inadequate word choices and or/grammer misspellings, as the pain meds are definitely leaving me stoned. But I ate a few peanut m & m's my favorite. I figured, what could 4 do.... yeah, um, level me.
I had to respond. I relate. Eating is my primary trigger as well. I know how frustrating this is, when you can no longer enjoy the things you used to before. Even when I did eat soft things, it would aggravate my condition. A full meal would almost invariably throw me into a full on Type II, Level 6-7 pain flare-up. I am speaking of this in past tense due to the fact that, for now, my symptoms, which first presented in 2003, are being successfully treated for the most part.
(Albeit, on a seldom occasion, I will still have break through pain if I have eaten a larger meal. On the rare occasion that this happens, I am just out of luck and caught in the flare-up until my food goes down a bit. My medications will not work when taken with full meals. They must be taken with small snacks in between meals, given an approx. 30 minutes head start before eating a full sized meal).
When this was case, I did rely on spoonfuls of creamy peanut butter to fill in the "protein gap", because eating meat was one of the most offensive things I could do to myself. Protein drinks were a staple, as well as yogurt and oatmeal. Fortunately, I DO like these things.
It is a question I have yet to really have seen answered in all of my readings. I wonder what about eating causes Trigeminal Attacks, of either character of Type I, or Type II.
I want to sent best wishes to you for finding the treatment, medication, or combinations thereof which works together to control you pain.
Thanks stef! I appreciate it. My mom is a really good cook and has made me two types of "chunky" soups I love. She pureed the soups, making them creamy and drinkable. She is being amazingly awesome with this. Right now, she knows how much I love steak and have not eaten it in months because I thought I had TMJ and it would hurt to eat it. So, she found an old steak soup recipe that my grandmother use to make and she is going to make it tomorrow night and purree it for me again!!! So at least I am getting some flavor.
I do like oatmeal, yogurt, even baby foods... lol. So that is okay. I LOVE the cherry cordial hershey kisses (my second favorite candy) that are out during the holidays. I have found that I can put it in my mouth and it just melts... no chewing required, and in fact, the flavor stays there longer for me to enjoy:)
I too would love to know what it is about chewing. It seems illogical for some reason and was why my doctor and dentist was convinced TMJ after ruling out teeth issues.
I was misdiagnosed as having TMJ from 2003-2009. All of that time, I wondered why my symptoms didn't really line up completely with those of the description of TMJ. A lot of the symptoms overlap, but when the pain became all but unbearable, and I never had completely lined up with the classic TMJ symptoms, I knew something else much be wrong. Now I've been diagnosed as having "Atypical Trigeminal Neuralgia" by a couple of docs and a "Head and Face Pain" specializing Neurologist, I am relieved to know what it is finally, but I'll admit a bit disheartened that there is no "corrective surgery" for me, like I thought there may be with the TMJ diagnosis.
I haven't seen the cherry cordial Hershey's kisses, but they sound delicious!! The steak soup sounds awesome too! I think it is great that you have an understanding, caring Mom. It sounds like she is supportive. It is important that we have people like that in our lives.
Your post made me hungry!!!
I also would love to know the link between eating and TN and ATN as well. It is one of the common triggers, as I've read, though, for Type II. I"ve even heard a member state one time that it seemed like "the pain is in the food", and stated that her family called eating "a necessary evil".
I"m glad to hear you're finding creative way to still get some flavors in your diet. Maybe there ought to be a section with recipes like for soft foods. You've given me a thought. Hmmm . . . .maybe?