I was just diagnosed with TN at the beginning of January. I also am having some other issues that seem to be neurological in nature that I am still in the process of having diagnosed. Three weeks ago I started on oxycarbazepin for the TN. Not too many side effects and it is now working pretty well.
snarlingcoyote - I would love to hear more about the special diet you follow that is helping yours.
Hi,
Sorry for not responding - haven't checked this thread in a while!
Uhm, okay, a little history. I was doing a low carb diet that a dietician recommended, it was about 60 - 70 grams of carbs a day. I noticed that my face pain was diminished; significantly diminished.
So I went out and started researching and found that it is known that a ketogenic diet will diminish or eliminate seizures. I also discovered that some of the anti-seizure meds (which are used to treat TN) have ketogenic properties.
I figured nothing ventured, nothing gained and eliminated carbs from my diet. Basically, I eat meat, eggs, a little dairy and green veggies. After a few days of this, my pain went away. If I eat carbs, I know I will have facial pain and if I don't eat carbs I won't. If I eat sugars - carbs that the body does not have to process - I will have more facial pain than if I eat carbs my body has to process.
I think there may be some mean point that would include a few carbs if mixed in with a lot of protein, but I'm not sure. Okay, I have to go get ready for work, so the following is from something I wrote as a "this is what ketosis is" personal blog thingy for a website:
Ketosis is an elevated state of ketones in the blood. This occurs when, due to low blood glucose levels a person's pancrease cannot produce enough insulin to fuel the body. At that point, the liver kicks in and starts producing ketone bodies and processing the fat in the body. We all produce ketones, especially when dieting or sleeping. It is the state of elevated ketones that is called ketosis.
Note: ketosis will not kill you and there is, thus far, no evidence that it will even do long term harm to your body. (A lot of people are suspicious that it does do harm, mind you, but there has been, to date, not one jot of evidence for this suspicion. We will say that the jury out on this.)
Now, on to ketosis's evil cousin. This critter CAN kill and does.
Ketoacidosis. If your body is producing many, many ketones, you will have a build up of keto acides in your blood. At that point the ph level of your blood will fall. This can be fatal. Ketoacidosis is commonly seen in diabetics and alcoholics.
Why would anyone want to induce a state of ketosis? There are two reasons.
One is for weight loss. If you can maintain a state of ketosis without going into ketoacidosis (which is pretty durn hard to get to, by the way) you lose weight quite rapidly, as your body is happily burning fat instead of glucose for fuel.
The second reason is to alleviate neurological conditions. The Ancient Greeks recognized that if someone who was epileptic went on a fast, the seizures would cease until the patient broke the fast, so the mechanism, if not the human chemistry involved, has been recognized for a very long time. A dietician designed ketogenic diet of high fats and extremely low carbs has been found to curb seizures in patients where other forms of medicine have not worked.
It works for me and it works very well. I do cheat occasionally, I will admit, but so long as I manage the cheats I'm okay. (One meal at Boma where I eat what I want = discomfort but manageable with some NSAIDs onboard. Eating schoolhouse bread the day after Boma = I start feeling pain again. I pace things out and weigh my "cheats" very, very carefully.)
Fortunately, it's easy to cut out carbs entirely. It doesn't take anything special even at Disney! For example, at MK, if we eat at Cosmic Rays, I get a cheeseburger, toss the bun and wrap the patty up in lettuce, add a dash of mustard and mayo and I've got lunch! At a restaurant, I ask for the big carby things to be eliminated. So if I get a salad, just hold the tomatoes, hold the carrots, hold the croutons. (Green leafy veggies are pretty okay, just be careful of the amounts.) If I get BBQ, no sauce and either the green beans or the greens or veggies and my meat. Give everything else to DH or toss in the garbage. Our favorite local restaurant has about 5 choices that are extremely low carb or can be made that way. (Omelets, steak, chicken, and tuna entrees with a side of veggies and a starter of a green salad with parmesan cheese and bleu cheese dressing, no tomatoes or croutons.) Cracker Barrel has a low carb menu that lists the carbs on the menu!
It's not that hard until you are faced with cheesecake or your favorite ice cream. Then you have to weigh your choices and make careful decisions about pain management.
Anyway, late for work, but I'll check the threat this weekend.
.
