"My daughter started potiga around Christmas. She hasn't told me about the dreams. I'll ask her tonight when she gets out of classes. She loves potiga. We took her off zonzimide to. Add potiga. She felt…"
-
Dorothy Martin
- Female
- Fishers, IN
- United States
- Blog Posts
- Discussions (60)
- Events
- Groups (8)
- Photos
- Photo Albums
- Videos
Dorothy Martin's Groups
Dorothy Martin's Page
Latest Activity
Dorothy Martin commented on Renea Mitchell's group Parents Talking w/Parents"My daughter is going to start a new drug over college Christmas break. We are going to remove zonzimide due to memory loss. We will keep vns,limital and vimpat and we are adding new drug Potiga. Anyone have any experience with this new med? From the…"
Dorothy Martin commented on Renea Mitchell's group Parents Talking w/Parents"dagmar,
my daughter had the vns implanted last year.it has been the best. she still has seizures but not the tonic clonics she feels so much more in control. she is almost 19 and she had it implanted about a year ago last month. she did have…"
Dorothy Martin commented on Debi Langsdale's group Parents of Teens"jennifer,
my daughter was driving a year before her seizures started. she hasnt driven since. dr told us that she will never be able to drive again. at first it was real depressing for her but now she understands it is safer for all if she doesnt…"
Dorothy Martin commented on Debi Langsdale's group Parents of Teens"Angie,
I can relate to you. My daughter has intractable generalized epilepsy. She is almost 19 and she was 17 and 1 month when she had her first grand mal. I think the internal seizures started the prior month. My daughter…"
Dorothy Martin replied to Sheri Romero's discussion VNS Questions in the group VNS Therapy"sheri, go for it. my 18 yr old daughter has intractable generalized epilepsy. She is currently on 3 meds all at the highest doses. She still had break thru seizures. We went for 2nd opinion and they only gave us a 20% chance of it working with her.…"
Dorothy Martin replied to paula's discussion Child's Accomplishments in the group Parents Talking w/Parents"Graduate and go to college. Her seizures have been hard to control. Between her meds and grand mals she had a lot of memory loss. We weren't sure she would even graduate. Grades went from a's to c,d,f's. After. 1 1/2 years of med…"
Dorothy Martin replied to sarah c's discussion new here, questions about zonisamide in the group Parents Talking w/Parents"I agree with Michelle. My Dr told us that zonzimide is not a stand alone drug. Give zonzimide a chance with the keppra. Yes you have to be careful of the "keppra rage" to to help we added a high dose of vitamin B and the rage went away.…"
Dorothy Martin replied to sarah c's discussion new here, questions about zonisamide in the group Parents Talking w/Parents"My daughter was on keppra first and when that didn't control the seizures they added Zonzimide it helped but didn't fully control the seizures so they added vimpat. That was our miracle 3 drug combo for awhile then we added limital. Then…"
Dorothy Martin replied to debra's discussion my grandbaby in the group Parents Talking w/Parents"I am so sorry for your loss. As a mom with a daughter with uncontrolled epilepsy that is my daily fear. I will pray for your family."
Dorothy Martin replied to Laura Strausburg-Smith's discussion Looking for a Pediatric Nero in Indiana in the group Parents Talking w/Parents"My daughter sees Dr Herrman with JWM Neuro I have had the best one on one care with him. He does all testing I ask for. There are about 25 Dr.s in the practice so when he was stumped on something he talked to the other Dr.s. my daughter has…"
Dorothy Martin commented on Renea Mitchell's group Parents Talking w/Parents"Susan zonagran did help my daughter for awhile but I found her memory got worse. Also she had a lot of weight loss. We are now on 3 different meds but weight loss has tapered off."
Dorothy Martin replied to Melissa Krisak's discussion It's All New News to Me in the group Everyday problems with Epilepsy"After my daughter's grand mals she has memory loss. She doesn't have auras so she doesn't know when a seizure is coming. Now with seizures and meds she has really had short term memory loss"
Profile Information
Comment Wall (6 comments)
- At 2:31pm on February 17, 2012,
Gina Lynn McKinley said… On our appoint at UCSF, our doc said he would rather she use medical marijuana then the xanex, or valium as those are so highly addictive and lose their efficacy after some time.
- At 6:30pm on October 26, 2011,
Todd Matthew Kozuszek said… Dorothy,
I hope everything goes good so your next appointment just
make things better! I have one this upcoming month and
my doctors will probably lower medication doses and increase
the VNS charge level. I've only had two seizure during the
past 58 days and both happened on the same day. I just
hope Privitera can help me cut those seizures off totally!
You have a beautiful day!
Sincerely,
Todd
- At 2:20pm on October 24, 2011, Todd Matthew Kozuszek said…
Dorothy,
When I had my first VNS implanted two years ago I had a side
effect just like the one your daughter is having. It only lasted
a couple of days. I had my new VNS unit implanted this January
and I had no problems at all with this one. Maybe my body was
used to the feeling!
Todd
- At 9:49am on October 20, 2011,
Tammi Zavardino said…
Dorothy
Thank you for adding me as a friend I am honored and feel we can never have too many friends in our lifetime. Have a wonderful day!
Tammi
- At 10:18pm on May 28, 2011,
cholesmom said… Dorothy, your post was like reading my own biography. My daughter was diagnosed w/ epilepsy 4 days before turning 18, after five years of misdiagnosis by multiple docs.Long story short some medications can have effects on memory. When my daughter was on a certain dose of depakote and lamictal- she started forgetting things alot, she would do her homework and then forget she had done it. She would eat dinner and 2 hours later as what we were having for dinner.
What I am trying to say is it could be how she is metabolizing her meds and not the epilepsy itself. Be firm with your neuro and demand a blood test. My daughter is in the college of her dreams and although her form of epilepsy is lifelong and I worry about 18 hours a day - for the first time in a year I can sleep now, and she is doing well. You can drop me a note via this site anytime you want. Hang in there and God bless
- At 2:33pm on February 7, 2011,
Alexander Lodi said… Greetings Dorothy!
Welcome to the site. I am sure you will find our site warm and friendly. Feel free to browse my blog if you wish and ask me any questions you may have. I'm more than happy to help.
Alexander
Terms of Service Update 6/4/2012
We have updated our Terms of Service for eCommunities Groups.
© 2013 Created by EF Admin.
Badges | Report an Issue | Privacy Policy | Terms of Service
