Hello all. I've been reading the posts at CWE for months, and thought I should post and introduce myself. (This is Long).
I was diagnosed with absence seizures at 9. I had my first TC at 12, and went through all the medications, without much success--or with side effects that outweighed the benefits.
I think I was what doctors call 'noncompliant', but that's okay, because my doctors were 'nincompoops' (and worse).
I was told, with each new drug, that this was the newest one, with almost no side effects at all, except I might be a little more tired. But for me, the side effects were Effects. Not off to the side, but front and center.
Up until my mid twenties, I had a total of about 5 TCs, the rest were mostly auras and absence szs. Then I started having one TC a month, around the time of my period.
My doctors wrote it off as coincidence, they'd never heard of such a thing. I knew it wasn't coincidence. I even noticed I had more auras when I was ovulating. And that began my interest in solving this puzzle myself, rather than being embarassed, or pretending it didn't exist, or hoping doctors knew more than I did about my brain and body.
I didn't have insurance throughout my twenties, or much money either, which probably helped. There was no way I was going to pay hundreds of dollars I didn't have to another "specialist" who had no idea how to help me, except to drug me into incoherence.
I found that taking about 15 mg. of phenobarbitol under my tongue, during the day or two before my period, helped. A single inhale of pot would stop my auras from progressing to TCs. I went two years without a TC.
I had a few more post-partum, after the births of my two kids. I have not had a TC in seven years. But it isn't gone. I always felt like I was fighting it.
Two years ago, I started having horrible anxiety-type attacks. It wasn't my heart. It wasn't anxiety--although these spells caused a lot of anxiety. It didn't happen during an eeg (of course). It felt like seizure activity, but different. Something new. My life changed drastically--I couldn't make plans, drive, commit to volunteer at my kids school--I never knew when it was going to happen. It was my worst nightmare, come true.
One day, I came so close to fading out into a TC--its the closest I've ever come without actually having one. I could not figure out why.
Long story short, I hopped on the internet and started reading, and reading, and reading. I tried progesterone, atkins, magnesium, daily phenobarbitol, Lamictal (weepy zombie with a rash, that was me for 2 mos.).
I asked my new doctor to test me for allergies--not eating wheat seemed to help a little. She gave me an ELISA allergy test, and of the 96 foods tested, I reacted to 18! My strongest allergy was to yeast. With those foods out of my diet, and taking digestive enzymes, the odd adrenaline-fading out-low blood sugar sensation was gone. (at one point, I bought a blood glucose tester and was testing my blood sugar during these episodes--it was steady, and in the middle-normal range). It keeps getting better every month--it's been three so far. I always had a strong feeling that hormones and nutrition were part of the answer.
The Dogtor J website was a start for me, but actually getting that ELISA test--which tests for delayed food allergies--helped so much. I always thought of allergies as immediate; hives, itching, anaphylactic shock. When I took dairy out of my diet, my skin cleared up. And without the test, I don't think I could have figured it out--I'm mildly allergic to cranberries, wheat and eggs--all in cookies I ate a few hours before my last serious seizure. I thought the sz. activity was from a blood sugar freefall. I never would have known that a delayed allergy to cranberries was even possible!
I still have epilepsy and I'm sure there's more to figure out--I'm my own guinea pig and I wish neurologists were half--or a quarter--as interested in this as I am.
But finding those triggers and eliminating that stress on my system is helping so much, and I wanted to share that--and thank all of you for the information I've read in your posts over the past months.
I was diagnosed with absence seizures at 9. I had my first TC at 12, and went through all the medications, without much success--or with side effects that outweighed the benefits.
I think I was what doctors call 'noncompliant', but that's okay, because my doctors were 'nincompoops' (and worse).
I was told, with each new drug, that this was the newest one, with almost no side effects at all, except I might be a little more tired. But for me, the side effects were Effects. Not off to the side, but front and center.
Up until my mid twenties, I had a total of about 5 TCs, the rest were mostly auras and absence szs. Then I started having one TC a month, around the time of my period.
My doctors wrote it off as coincidence, they'd never heard of such a thing. I knew it wasn't coincidence. I even noticed I had more auras when I was ovulating. And that began my interest in solving this puzzle myself, rather than being embarassed, or pretending it didn't exist, or hoping doctors knew more than I did about my brain and body.
I didn't have insurance throughout my twenties, or much money either, which probably helped. There was no way I was going to pay hundreds of dollars I didn't have to another "specialist" who had no idea how to help me, except to drug me into incoherence.
I found that taking about 15 mg. of phenobarbitol under my tongue, during the day or two before my period, helped. A single inhale of pot would stop my auras from progressing to TCs. I went two years without a TC.
I had a few more post-partum, after the births of my two kids. I have not had a TC in seven years. But it isn't gone. I always felt like I was fighting it.
Two years ago, I started having horrible anxiety-type attacks. It wasn't my heart. It wasn't anxiety--although these spells caused a lot of anxiety. It didn't happen during an eeg (of course). It felt like seizure activity, but different. Something new. My life changed drastically--I couldn't make plans, drive, commit to volunteer at my kids school--I never knew when it was going to happen. It was my worst nightmare, come true.
One day, I came so close to fading out into a TC--its the closest I've ever come without actually having one. I could not figure out why.
Long story short, I hopped on the internet and started reading, and reading, and reading. I tried progesterone, atkins, magnesium, daily phenobarbitol, Lamictal (weepy zombie with a rash, that was me for 2 mos.).
I asked my new doctor to test me for allergies--not eating wheat seemed to help a little. She gave me an ELISA allergy test, and of the 96 foods tested, I reacted to 18! My strongest allergy was to yeast. With those foods out of my diet, and taking digestive enzymes, the odd adrenaline-fading out-low blood sugar sensation was gone. (at one point, I bought a blood glucose tester and was testing my blood sugar during these episodes--it was steady, and in the middle-normal range). It keeps getting better every month--it's been three so far. I always had a strong feeling that hormones and nutrition were part of the answer.
The Dogtor J website was a start for me, but actually getting that ELISA test--which tests for delayed food allergies--helped so much. I always thought of allergies as immediate; hives, itching, anaphylactic shock. When I took dairy out of my diet, my skin cleared up. And without the test, I don't think I could have figured it out--I'm mildly allergic to cranberries, wheat and eggs--all in cookies I ate a few hours before my last serious seizure. I thought the sz. activity was from a blood sugar freefall. I never would have known that a delayed allergy to cranberries was even possible!
I still have epilepsy and I'm sure there's more to figure out--I'm my own guinea pig and I wish neurologists were half--or a quarter--as interested in this as I am.
But finding those triggers and eliminating that stress on my system is helping so much, and I wanted to share that--and thank all of you for the information I've read in your posts over the past months.
