Epilepsy transitions etc and other general help?

[Adrienne]

Hi all, my girlfriend has epilepsy and is currently taking epilim (valproic acid) 800mg a day and lamictal (lamotrigine) 300 mg a day

because of the side effects of epilim when pregnant she is wanting to switch to more lamictal and less epilim. she isn't pregnant yet, but wants to be transitioned off of it before she gets pregnant.

this is the first time that i have been around her when she is transitioning meds and i don't know what to expect. Her mother is incredibly b*t*hy about me knowing anything about Laura's epilepsy, but given that she lives with me i think i need some prepearration for this.

also i have never seen her have a seizure - can any one helo me with information about stuff to look for. i have been with her when she has had auras before but not knowing where to turn i thought i'd turn to the dis. cause you guys are like family

Thanks in advance

Adrienne

 

[SueM in MN]

I don't have time for a long reply, but here's a good resource for you:
http://www.epilepsyfoundation.org/

It looks like a lot of information, but just dive in and take a look around. It's a site with a lot of good information, especially the "Quick links" on the left side of the page - especially "Women's Issues" and "First responders" (which will help you with knowing what to do if she has a seizure). As far as knowing what to expect when she has a seizure, everyone reacts a bit differently, depending on what part of their brain is 'firing' when they have the seizure. It would be helpful to know what general type of seizures she has because you can look at the general description for that type. She probably does know that and from that, you can get a general idea of what might happen. She may know more from what she's been told about her seizures, but only someone who has seen her have one would know exactly how it affects her (or possibly her doctor, who probably has a description buried somewhere in her chart).


I think your friend is very wise to plan ahead. She is going to need to work with her doctor to do the switch over and there might be some seizures as she switches, so it's good you are planning to be prepared. As long as your friend is an adult, she has a right to have anyone she wants with her during doctor visits, so I would suggest you maybe ask her about going with to the doctor when she is planning the transition.

My short reply got pretty long and I have to get to work now. Hope it was helpful.

 

[Kirlinale]

My 5 year old has Epilepsy, in a addition to other medical issues (brain tumor and GDD) she was born will all. She is currently taking Lamical 100mg per day, Depakote 750mg, Klonapin and Zonegran 150mg.

Med transitions can be tricky, especially if she has been on the meds for a long time. It is wise to plan ahead. She should probably wear a medical alert tag if she does not alreay have one. It is particularly helpful if she is alone, like in restroom or other place and has a seizure. I don't know her seizure type, so I don't know whether she has a partial seizure disorder or a generalized. The type of seizure you may see depends on the type. For example , someone with Partial Focal seizures may make repetative movements but be alert or may just stare off to space, may have clonic movements of arms and legs. Some one will more generalized seizures may fall to the ground and convulse (generalized tonic/clonics) or have significant impared conciousness with little convulsions.

Some Questions to ask her are:

What kind of seizures does she have and what do they look like?
When should you call or if you should call EMS during a seizure ?(5mins+ etc)
Learn what do when she has a seizure, if a Partial , you might need to direct her to a safe place, if a TC you will need to loosen tight items, remove dangerous items around her and place her on her side?

Chances are the med changes will go fine, however, some doctors will prescibe medications to use in emergancies such as Ativan, Klonapin, Tranzene etc, these meds are considered temporary but can help keep seizures in check if med switches get tricky.

My daughter has been on the whole lot of meds and weaned off many so if I can be of any further asstance please let me know. WWW.EFA.ORG is a great place to visit, they have some very active boards for you to ask questions on.

Nicole