Feeling pretty lost

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Hi! My name is Rachael, I'm new to this site but it looks really good, I feel like I have had no one to talk to who has experienced seizures and who understands how I feel...

I have been diognosed with epilepsy for a year, I had my first fit when I was 18 but this was a one off. My seizures began to happen regularly when I was 20.

I had another seizure last night, so my tounge is extremely sore! My seizures are getting worse each time and alot more regular, I do not think my medication is working I believe it is making it worse (lamotrogine 400mg) my doctors are currently trying I deal with this.

I really don't know what to do! I just want it to stop, any of you guys have any tips for me to stop having them? I can't think of anything else I can do! I don't drink alcohol, I eat and drink, I ensure I have lots of sleep and I exercise. I have a very promising but stressful job (which i dont know if i can cope with at the moment) but I don't want to give up my career because of this stupid condition!

I am not trying to feel sorry for myself but I just don't know what else i can do! Any suggestions?
 
Take your medication as directed. Communicate ANY side effects and be really honest with your doctors. Get lots of rest, sleep and eat right. Do not drink alcohol or too much caffeine, NO recreational drugs. Try to be chill and avoid stress. The others here are very helpful and experienced, they can answer questions. Stay Calm as best you can and Carry On. Enjoy today.
 
Hi and Welcome Rach,

Sorry to hear of your dilemma. My seizures started when I was 22 years of age and just beginning my career, also. So I do know how you must feel. As bighealy said, make sure you get your rest, take your medication as instructed and try not to get so stressed out. Take deep breaths and ONE day at a time.
 
Hi, and welcome to CWE!
The only other piece of advice I can think of is requesting a leave of absence from your work, if this is possible, until you and your doctors have a better handle on the seizure control. Is this possible without losing your position?
As far as the lamotrigine not working: that can happen with the first or even 2nd medication that is tried. I was on it at one point, and while it helped one of my seizure types it made another type worse. There is a lot of trial and error with medication. As has been mentioned, keep in regular contact with your neurologist to make sure he/she knows what is going on.
I always suggest people see an epileptologist, a neurologist who specializes in just epilepsy, if at all possible. If you are not seeing one, this is something you might want to consider if you still are not making any headway towards seizure control in the next little while.
Good luck and see you around the forums!
 
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Welcome, sorry to hear you are dealing with this. You found the right place, good people on here. Everyone pretty much gave great suggestions. I would just try your best to avoid stress, and make it clear to the people around you what is happening.
 
Did they determine what kind of epilepsy you have? I know that lamotrigine is helpful for all kinds of epilepsy, but that for some people it can make generalized types of epilepsy worse (such as juvenile myclonic epilepsy or idiopathic genetic generalized epilepsy). I am being taken off it for that reason. I'm definitely not saying that is the case with you, but if you continue to not see results with lamotrigine, no matter what type of epilepsy you have, as Jen mentioned, talk to your doctor about it. I'm sorry you are having troubles!!
 
Hello and welcome!

I'm sorry you have to go through this now, but I have a couple of suggestions which may help in the long term. First, 400 mg of lamotrigine is not necessarily a very high dose. In spite of what most of the information on lamotrigine says, you should ask to get a blood level drawn to see what your personal level is. Also, keep a record of your seizures, but don't just use a calendar like I did for 30 years. I recently discovered the Seizure Tracker website and that is the way to go. ( https://seizuretracker.com/ )
You enter your med information, and then date and time of the seizures you have. You can generate a report whenever you want that will show you in nice graphs a lot of info, and you may see patterns that you otherwise would not have picked up on. I found, for instance, that my seizures tended to cluster before I took my meds, so instead of taking them twice a day (as the literature and the docs will tell you) I changed to 4 times a day. That in itself made a difference, and (according to my pharmacist and my epileptologist, after I came up with the idea myself) there is nothing wrong with 4X/day dosing. It just maintains a more even blood level. Also, on 2X/day, I could never get higher than 400 mg a day or I would get really sleepy and groggy and almost non-functional. With 4 time a day dosing I am at 600 now and feeling no adverse effects at all. I haven't had any seizures now for 2 weeks, which is pretty good for me. I will need a couple more months to see if it's making a long-term difference, though. In all the decades I have had epilepsy I have not gotten the above information from either of my 2 neurologists or the epileptologist I am currently seeing. It may be in the literature somewhere, but I have never seen it. I would suggest you try what I suggested before you let them start adding meds. It might help a lot, and I think that the fewer meds you are on, the better.
Check out SeizureTracker and see what you think. Also, learn all you can about epilepsy because from experience I know that your docs may not necessarily think outside the box enough, or even have enough information, to know how to help you.
Keep in touch!
 
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I've had epilepsy for 11 years now and the first few where the hardest.

It took a good while to figure out what meds would work best. Some made me have more seizures, some I couldn't handle the side effects and some didn't work at all. My neuro had to figure out what meds for me to take, what dosages to take and how to take them during the day. I always referred to it as finding the right recipe.

Also some of my meds would work for a while then they seemed to stop working, which is what sounds like may be happening to you?

Stress is my #1 cause of seizures. If something stressful is going on we know there is a seizure on it's way. My grandmother died about a month ago and we were very close. I've been having seizures left and right since then. At least double, but probably more, than I normally have.
 
Hi Rach, Welcome to our forum.
There are a lot of people that can advise you as to what to do.
Have you tried a ketogenic diet?
How about yoga and meditation?
Music can and does have an effect on how you feel.
Make friends here, pm them if you need to talk.
There is no chat feature, but we can communicate with you when you have a question or concern.
"Me" time is very important. Don't give up you social network as they can be helpful, too.
 
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