I am struggling. I have been taking Tegretol, this medicine has not done much for my pain. I continue to have constant pain along with up to 4 attacks a day. My doctor had given me oxycodone which actually worked after taking two 5mg pills every 4 hours for three days. Once I got on top of the pain I was feeling empowered!
This is where I discovered the tegretol is truly not doing much for me. I slowly weaned down to two oxys a day and it only took 2 days until the pain has come back full bore! FML!!!!
I discovered today that eating is my biggest trigger. This brings me to the core of my ramblings...I had pb toast for breakfast. After that I had not eaten all day. I had a great day (within the realm of TN). I then spent the day with low constant pain, until dinner. This lead to my mistake. I chose to eat spaghetti with my family. BAD IDEA! I have been suffering for the last 3 1/2 hours :(
So as the title states: eat and have terrible almost completely unbearable pain...or don't eat (or only eat soup) and feel semi normal?
What do the rest of you do when it comes to this terrible compromise?
Eating is one of my triggers also - especially right after dinner! However, the meds make me hungry, which is okay with me as I have been a skinny, minny all my life. When I am in really bad pain, like a whole day of constant pain, my appetite takes a dive and I don't want to eat at all. Crazy ups and downs. I have found that eating small snacks - non crunchy foods - intermittently over the day helps instead of eating a large dinner meal. I eat cheese and fruit alot. Isn't this awful that we have to compromise so much for this disorder. I see new people on here everyday and wonder if more people are discovering the site or more people are experiencing this disorder?
How long were you on the Tegretol? This is not a pain pill. It must build up in your bloodstream. There are several others in the same drug class that may work for you when Tegretol does not. Eating is my trigger as well. I drink a lot of protein shakes and eat soft foods.
I have only been on tegretol for just over a month. The doc told me that it is an anti seizure medication. This is supposed to keep the trigeminal nerve calm therefore controlling the pain. I have found this is not true. I have taken advil, aleve, tylonal 3 and oxycodone for the pain. The only thing that calms my pain is the oxy.
Thank you all for your comments!
Oh, I relate with this!!!
Eating is my BIGGEST trigger! If I eat a big meal, I WILL be miserable. Plus, any med I put on top of the food will not work for a long time, if at all!
I'm feeling bad that spaghetti has caused so much misery! I'm Italian and spaghetti is one of our family's remedies. If I could not chew my great grandma's recipe for spaghetti sauce, I'd put the pasta and sauce in the blender and blend away! Oh, my, doing without that secret sauce would kill me! The sauce cooks all day so that the sauce melts in your mouth and the aldente pasta is soft and easy to chew. It's the garlic bread that is out of my reach at present (unless it's a good TN day).
Pain with eating is so much of what I experience! So, I've come to terms with drinking protein drinks a few times a day, a small snack around 4 and a light dinner. Plus, by dinner time, meds have built up in my system and when I finally eat a nice, hot meal, I actually feel better (pain and stress wise).
Eating was different before 2 gamma knife surgeries and 1 MVD. I could not eat a meal at all! Now, the harsh TN1 pain is gone (except when estrogen levels are high), and the damaged nerve (from the radiation burns) is predictable. I've used botox for migraine relief and have found that the TN pain is helped by this treatment as well as the migraine medication: Amerge. Apparently the Trigeminal Nerve is involved with the migraine pain, so for some people migraine treatment is a compliment to TN treatments.
There are some pretty awesome healthy soups and smoothies that are delightful and satisfying. (If I come across the recipes, I'll send them to you.) This TN can't take all of our enjoyment from us!
Take care, Knottytree!
Lynda You cracked me up. Put the pasta in a blender and blend away!! As I love spaghetti... LOL
But seriously, right now,I am eating yogurt for breakfast then my pills and a pain pill. Then for lunch soft foods. Cuz I feel pretty well with the pain pill added. Then for dinner I just don't really eat much unless it is soft. Like a banana or mashed potato. I think I am losing weight. Unless I take another pain pill, I can't really chew too well. So...
I too am on Tegretol...was supposed to take it 3 times a day, 4 tablets. This was spaced too far apart between the last dose (supper time) and the next dose (breakfast time). I started spreading the them apart to have the spacing more even (usually take every 5-6 hours until bedtime) and that has helped immensely. I don't have as much pain when I wake up now as I did and as you all have said, with it building up in my system during the day, I am able to eat better in the evening than in the morning. I am a chef...food is my passion!! ugh. I don't know if this makes any sense, but it is has worked for me for for the past few weeks...!
I am on Tegretol as well, but it was making me sick when I was on it 4x a day, so they changed me to a time relapsed does 2 x a day. Eating??? Well...I miss LOTS of my fav foods...thank goodness I had my dad's chicken soup recipe!! Chewing is definately a trigger...so I am on oatmeals and cream of wheat..I tried a sandwich today...not so good..I am suffering now!