Epilepsy & Seizures Support Group
Epilepsy (often referred to as a seizure disorder) is a chronic neurological condition characterized by recurrent unprovoked seizures. It is commonly controlled with medication, although surgical methods are used as well. Seizures (or convulsions) are temporary abnormal electrophysiologic phenomena of the brain, resulting in abnormal synchronization of electrical neuronal...
I know I haven't been on here or helped in a while, I've been super depressed lately and now I just feel discouraged. I've been on Keppra for 6 months now. I had a grand mal seizure 2 weeks ago, went and saw my neuro today and he was going to up my keppra, but then we started talking and he decided to switch me to lamotrigine (basically because my husband and I are thinking of having another baby this year) My OB said Keppra was safe, so I felt fine with it, now he's telling me this lamotrigine is safer, but I'm reading all the side effects and stuff and I'm super scared! and it says it's class C for pregnancy. I'm doubting everything now. I'm doubting if meds can even help, I'm scared that my future is over and barred by this disease. My neuro didn't give me much confidence, he said some people have to be medicated forever, some are medicated and never have any issues and it's all very successful.
I know I am very new to this, it's only been 6 months, but it seems like each seizure is getting more intense. My head pressure is back and it's everyday. I've been looking for a job, but haven't been successful at finding the right one.
Last time I talked to my pcp, she almost took my license away and she said they would offer help with getting on disability (since I got denied for it), but I don't even know if that would work.
I don't know if I should be seeing an epilepsy specialist or staying with my current neuro. I got a copy of my EEG report today and then I noticed on my next appointment paper (it's an overview of the visit and the next scheduled) and I saw that he typed stable, when hello, I just had a grand mal 2 weeks ago, and that doesn't include all the partial ones I have that I am not aware of. The only reason I knew I had a grand mal was because My husband told me. It woke him up in the middle of the night and it lasted for 1/2 hour and kept him up for hours, I had no clue, he even tried waking me up and I didn't feel a thing. It was scary waking up and having him explain everything he witnessed. I guess I feel lost and upset and don't know what to do. I'm scared I'm going to react to this new med and have to go to the hospital (because I'm known to have allergic reactions to meds) How do you balance this disease and life?!?
I know I am very new to this, it's only been 6 months, but it seems like each seizure is getting more intense. My head pressure is back and it's everyday. I've been looking for a job, but haven't been successful at finding the right one.
Last time I talked to my pcp, she almost took my license away and she said they would offer help with getting on disability (since I got denied for it), but I don't even know if that would work.
I don't know if I should be seeing an epilepsy specialist or staying with my current neuro. I got a copy of my EEG report today and then I noticed on my next appointment paper (it's an overview of the visit and the next scheduled) and I saw that he typed stable, when hello, I just had a grand mal 2 weeks ago, and that doesn't include all the partial ones I have that I am not aware of. The only reason I knew I had a grand mal was because My husband told me. It woke him up in the middle of the night and it lasted for 1/2 hour and kept him up for hours, I had no clue, he even tried waking me up and I didn't feel a thing. It was scary waking up and having him explain everything he witnessed. I guess I feel lost and upset and don't know what to do. I'm scared I'm going to react to this new med and have to go to the hospital (because I'm known to have allergic reactions to meds) How do you balance this disease and life?!?
I've been gone for awhile from this Group, but, I am back & more than willing to Listen & Help any way I can. If you are still having seizures You should Not be Driving! Period! Definitely, file for Disability! You may be turned down the first time, but, it is recommended you seek a Lawyer to help w/ an appeal if need be. I wish I had Yrs ago! Now, I am re-married & do not qualify. :(
Do you keep a Daily Journal? A daily Journal should consist of all activities. Foods/bevs consumed (when, what, how much), sleep patterns, All activities & most important Your Mthly! (Ever hear of Catamenial Seizures? They are caused by fluctuations in your Hormones) Any medications, prescribed or over the counter. Include your Pressure Episodes, too. Plus, everything Hubby told you about any 'episodes'. This is a very Valuable tool for you & your DR. You can download a Seizure Tracker from epilepsy.com or WebMD. :)
12/hr seizure? Were the 'episodes' back to back or Non-stop? Non-stop are known as Status Seizures & you need to go to the ER for them. Normal Episodes only last 2-3 minutes Each!
Seizure control can be 'trial & error' & takes Time & Patience to find a med that Works for You! Keep in mind, Side effects are what we watch for, not what will necessarily Happen. If you take your meds On Time, Same Time every day & eat nutritious meals you will experience fewer to no side effects & it will ensure your med works properly. If you do not note an improvement in seizure control w/in 4-6 weeks or do experience side effects that affect your daily living then report to your Dr ASAP!
Stable EEG? Just means you did not experience any seizure activity at time of test. It doesn't mean all is OK! I would stick w/ your current nuero for now. But, if things don't get better than definitely seek an Epileptologist (seizure specialist)
Epilepsy is not a disease! It is a Disorder! And how do we balance our lives. By taking Life One Day at a Time. Do Not Let Epilepsy Rule!
Depression is a another Issue. You need to find ways to combat it. You can try Vitamin D3, start on 1000IU & increase each week if need be, up to 5000IU. Or for natural Vit D Seek the sun 10-15 min a day on face & arms. Do some 'homework' to find other ways to decrease your Depression. It's 'normal' to feel depressed after an Epilepsy Diagnosis. But, Epilepsy, itself can cause Deepression. So, it's best to get it under control.
Hope this helped. Please, keep talking w/ us & Keep Learning!
Hugs Love Candi
Start tracking your foods. + Avoid Gluten, additives ie; Food coloring, artificial sugars. Limit salt & regular sugars. Caffeine should be avoided, but, may be consumed in small amounts 1-2 cups?? :)
Doesn't your Hubby know Anything about Proper Seizure Response??? He should Not try to awake you. He should Time you. He should Never leave you alone Unless he is sure the activity is over! He should make sure you are turned on your left side to avoid you suffocating/choking on fluids, bile/vomit or excessive fluids. :( And talk calmly to you till the seizure is over. Then, either write down everything he witnessed or tell you so you can write it down!
Yes, contact a Lawyer! Every State is Different as to Qualifying. Here in AZ you can only make $20,000 & only own 1 home & one car. :( That is just for Disability. For SS you have to have soo many yrs as an employee to qualify.
As for Driving. You Know you are having seizure activity. So, common sense: Do Not Drive! Your Neuro sounds like he don't know S***!
Tatty. You are a 'newbie' to seizures. But, you are Not Alone! Over 65 million people world wide have Epilepsy. I Promise you, the more you learn about Epilepsy & all it's aspects, the easier it gets! Especially when dealing w/ Dang DRS!
When you are ready, Join other Groups! Keep reading & Listening. If you have a Facebook Account, there are lots of Epilepsy Groups & pages. :) Try National Seizure Disorder Foundation Community. :) If you have problems let me know. :) For now, I am gonna recommend at least this ladies Site. You don't have to join to read the articles. Only to comment or Ask Questions. :) You can even use the Search tool for Subjects, such as Diets, disability, etc. Or just scroll thru Topics & open those that you want to read. :) http://www.epilepsytalk.com/
Love candi
Love Candi
If he is making Under the Above posted amount, then have him sign the extra car over to a Friend or relative. You can still keep the car. It just won't be in His Name. :)
RASH??? Not Good! You need to Bug that Neuro till you get an appt & Get OFF Lamictal. ASAP! Considering the other side effects you are experiencing I would Think he would do so! :( If not, seek another Neuro! From what you have said about your Neuro, I think I would be Searching for a New Neuro, Period!
Keep us updated. Know I care! Hugs!
Love Candi