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#1
10-28-2008, 11:10 PM
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Hello! New here from Idaho! I've had epilepsy since puberty and although I haven't rec'vd a medical diagnosis from my neurologist. I believe I have catamenial epilepsy because of the timing of my seizures and my monthly cycle. My neurologist is pretty old school and hasn't figured it out yet so yesterday I made an appt with an epileptoligist.  I'm excited!  I've also had a VNS in for about 8 yrs but that doesn't seem to have helped much. The intensity of my seizures tend to go in phases as I get older, some have been falling, stuttering, non-verbal w/ only smal facial movement, drooling, nocturnal only, and now grand-mal loss of consciensness (for about 10-20 sec) I had one last night that was one of my worst ones yet and had to go to the ER because I fell against an oak coffee table and split my head open. I ended up with 5 staples in my head so that was an adventure to say the least.  Last edited by Junebug; 10-28-2008 at 11:38 PM.     |
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#3
10-29-2008, 07:32 AM
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| welcome on board. it appears my daughter also has catamenial seizures. Wow she's had staples in her head, bruised up nose and lost a tooth recently due to falls. horrible. we just started BCP in hopes to hold off the hormonal nightmares. Perhaps that would be helpful to you. Also there is another anti-epileptic drug that is often used for catamenial seizures----Diamox/acetzolmide ( I know I butchered the second spelling) It can cause weight loss and some need to take potasium supplements. Just a thought |
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#5
10-29-2008, 08:14 AM
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| Hi Brandi, welcome to the forum.  If you've had the VNS for about 8 years, I'm guessing you were one of the original clinical trial recipients? Are you using any progesterone or pregnenolone to address your TOM hormones? In any event, make yourself at home here. 
__________________ Check out this chart of alternative epilepsy treatments and this page on EEG Neurofeedback. Would you like to help support this forum? We recently had a bunch of new neurofeedback practitioners agree to offer CWE members discounts for service. See post #12 for the list of all participating practitioners. |
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#6
10-29-2008, 08:31 AM
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| Hi Brandi and welcome to the group! My seizures, which started around the age of 14 (now Age 41), were eventually diagnosed as Catamenial Epilepsy. The addition of the drug Diamox (Acetazolamid), which is actually a diuretic, to my regular meds was what finally got my seizures under control for a long time. Even after having surgery to remove a tumor and then having a milder form of seizures return, the Diamox was added again, and I'm still currently taking it. It has now been over a year since my last seizure. I wish you good luck at your appointment. Sincerely, Josie |
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#7
10-29-2008, 12:41 PM
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| Hi Junebug! Welcome to CWE. As you can see, a friendly group to say the least. Feel free to ask questions, vent, or just chime in.
__________________ "Watch your words, for they become actions. Watch your actions, for they become habits. Watch your habits, for they become character. Watch your character, for it will become your destiny." Epilepsy 101 |
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#8
10-30-2008, 02:55 AM
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| Hey Brandi (Junebug)~ Welcome to CWE. I hope you enjoy the board ad much as I do. I can say if you ever have a question just ask and I am sure someone will have a answer for you. Also, there is alot of wonderful, caring and very supportive friends on here. Enjoy! 
__________________ "Do what makes you Happy, Be with who makes you Smile, Laugh as much as you Breath & Love as Long as you Live." |
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#9
11-02-2008, 09:23 AM
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There may be hope for you Hi Brandi! While reading your post, your seizures made me think of mine when I was younger. I started having seizures when I was 8 years old. My monthly cycles started when I was 9. Each month after that, my seizures were worse around that time. I could always tell when it was that time of the month by my seizure activity. Doctors called my seizure type as Petit Mall then but in later years, Complex Partial. Well, I never thought I would enjoy being "old" but I LOVE IT!!! Now that I have gone through menopause, my seizures have improved sooooo much. Menopause did what medications never did. All the medications I have taken through all the years, was just like drinking water as far as helping my seizures. Now, I have more seizures that are like absence seizures. I have them now that even my husband doesn't know I'm having them and that NEVER happened when I was younger! Yesterday, I was getting dressed to leave and the next thing I knew I was ready to go and I did it correctly but just don't remember it. I'll take that type anytime over the old kind. Yes, I still have a few of the old time but very rarely. If I had known this when I was younger, I would have had my "plumbing" jerked out years ago! Just wanted to give you some encouragement. Good luck! |
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#10
11-02-2008, 01:13 PM
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| Welcome! You are among a great bunch of supportive people! |
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#11
11-02-2008, 01:54 PM
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| Hi and Welcome! We're glad you found us. -Julie
__________________ "I WILL NEVER GIVE UP ON MY DREAMS; I WILL JUST MODIFY MY PATH FOR REACHING THEM" -j (me) "Life is better left to chance. I could have missed the pain, but I'd have had to miss the dance." -Garth Brooks |
Dr. Arvind Ramaswamy 
