Thanks everyone for the feedback and support. Like mentioned I was feeling very well all week up until Friday afternoon when I was accidentally glutened from a soup that had enriched wheat flour as an ingredient. I've been kind of sleepy since then. Other than that I have faith in it.
Sorry if there was a failure of communication Zoe, I wasn't calling the diet in itself a placebo, but the fact that for me maybe it was. You know, that initial "yea this is working" feeling I had since I do tend to exaggerate at times. Now you said you have been seizure free since '98? How frequent and severe were your Temporal Lobe seizures? Were you ever on meds? And if so are you off them now? This is very encouraging if it helped your TLE, because I've read somewhere that if you don't start the diet immediately after the symptoms then you're damaged and more than likely a GFD wouldn't help. That bummed me when I read it
No failure of communication, I didn't realize you were referring just to yourself. It can be difficult to tell if you are feeling better from the diet or feeling better because you are doing the diet, time will tell on that. It's pretty normal to not know how to gauge what's happening, whether we are exaggerating, up or down.
I hope the diet works for you, have patience, be persistent, and give it a lot of time. While you are on the diet is a good time to do a lot of google searching. You posted that article a while back on gluten sensitivity and diminished blood flow to the brain that was so interesting. The problem with the brain was due to the long term effects of chronic inflammation which is the reaction to gluten sensitivity. We don't feel it, like an allergic reaction, and it does it's damage over time. So we may experience the inflammation as other symptoms, mood changes, seizures, arthritis, for example.
About my seizures. My seizures were the result of brain damage, strokes, spinal meningitis and brain surgery. I had two brain surgeries, one for the vascular disease, the second for seizures which did not work.
The right temporal lobe was removed and some of my prefrontal lobe. No part of my brain was spared from the meningitis and I now have a very large cyst where the temporal lobe was taken out. I lost some of my vision and about 40% of my hearing. I really was a "hopeless case" in terms of seizures.
After the second brain surgery there seemed to be some improvement but within a few years it was the same as before the operation. I was having around 3-5 partial seizures a day. I had quit taking the anticonvulsants because they didn't help and the side effects were so bad. I now think the side effects of the AEDs were triggering most of my seizures.
About 5 years after the failed brain surgery I started seeing a pyschologist to try to control my seizure symptoms, panics, hallucinations, etc.. I was on atenolol for my heart arrythmia which was triggered by the seizures.
The goal was to accept that the seizures were incurable, but to try and learn some techniques to manage the panic and heart spells that the seizures triggered. I began learning breathing techniques and self-hypnosis to bring myself back to normal when I had a seizure or felt one coming on.
This helped tremendously, but I couldn't figure out why I had a seizure almost every day , about an hour after lunch. I started seeing a hospital dietician, thinking I might have an allergy.
Mary, the dietician talked to me a long time about my diet. She suggested I eliminate milk. Her reason was that a lactose intolerance could set off a reaction like and epinephrine rush, triggering seizures and the heart spells. I noticed a big improvement almost right away. The worst of the heart spells stopped within a week or so while all the other partials continued.
Mary then suggested I try a gluten free diet, very new idea in 1996. She helped me plan my meals and I started the diet. It was probably a few weeks before I felt improvement but it was very clear. Not only was I having fewer seizures but my mental and emotional states were also improving (thinking now this must have been from the diet reducing the chronic inflammation).
Anyway I continued to improve, with the diet and the behavior mod for the next two years and in 1998 was almost seizure free. Just a lot of small partials, but nothing too debilitating. At that point I heard about someone taking taurine for seizures. I tried it and the effect was quite dramatic. My little partials stopped. About 2 months later I was doing well enough to get my first driver's license in fifteen years. I was then able to move from Seattle to Arizona. In AZ, I started learning yoga, and took neurofeedback training which helped me keep seizure free, even after a serious auto accident.
I've gone off the gluten free diet several times and start to have symptoms again, preludes to seizures, so I go back on the diet. My mental and emotional states are definitely much better on the diet and I've now got over ten years seizure free.
I hope the diet works for you, but if it doesn't, don't despair, there are other options and always things you can learn to manage seizures on your own. Right now, I'm writing an article about the Modified Atkins Diet for seizures, which is helping people who have intractable seizures. It looks like Johns Hopkins may still be recruiting for a new research study on it. So if the gluten free doesn't work the Atkins diet is an option too.
Don't buy into a lot of what you hear about brian damage and seizures; your brain can figure out how to adapt to damage and to heal. Just give it the care and nutrition it needs.
And give yourself a good long time on this diet, like a year at least, though you should see signs of improvement well before then.
Even now, this many years later, I have to make up a lot of gluten free snacks to take with me during the day, or I'm likely to cheat on my diet. And getting gluten, like you noted, makes me get really fatigued and sleepy too.
I read what you mentioned about being damaged, but don't let that bum you out. I think I read the same article; even if the brain is damaged you can still overcome the seizures. All the brain damage does is lower the seizure threshold, make you more likely to have a seizure than someone with no brain damage. However, there are no limits to how much you can raise the seizure threshold, and the diet is just one of many approaches you can take. Good thing you are here at CWE where you can sound out, or sound off, as needed. :mrt: Keep on keepin' on!
:mrt: