Community Forum Archive

Hello. Everyone’s response to medication is different, but the goal of epilepsy treatment is NO SEIZURES NO SIDE EFFECTS. I personally didn’t tolerate Lamotrigine (Lamictal) well either, in fact, I had lots of side effects while on it and my body is still trying to adjust even after being off of it now for over two months. I didn’t experience hair loss, but I had chest pains, diarrhea, dry mouth, sore throat just to name a few while on it. After going off it, I had severe constipation to the point where I now have to take stool softeners. So, yes, some people are very sensitive to it. I suggest that you talk to your doctor about an alternative medication because depression is also a known side effect of Lamotrigine and it can make it worse if you already have it and you should not have to sacrifice your hair or mood for seizure control. There are lots of other seizure medications out there to try. I’ve tried several and some that many people have a high rate of discontinuing, I tolerate well, whereas others that many other people tolerate well, I didn’t. So, medication is really an individual experience and a trial and error kind of thing. If your doctor doesn’t listen to your concerns or if this is the second medication that you have tried, then you may need to get a second opinion, such as from an epilepsy specialist at an epilepsy center. Someone from the Epilepsy Foundation will probably be responding to you during the week with some more information. 

Hi, Thank you for posting, it sounds like you’re going through a lot. As Gianna shared in her comment, treatment and how the body may react to certain medications varies for each individual. To learn more about the medication you're taking, commonly reported side effects and more, visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects . It's important that you’re following up with your healthcare team to address your concerns and if you continue to experience any changes in seizure types/frequency, symptoms, moods or behaviors. Be open and honest with your doctor about the side effects and how they affect your health and daily life. If you have not already may want to consider getting more specialized care at for your epilepsy at a comprehensive epilepsy center. A comprehensive epilepsy center is a group of healthcare professionals who specialize in the diagnosis, care, and treatment of people with seizures & epilepsy. Usually led by an epileptologist, (epilepsy specialist), who can help explore all treatment options and determine what individual treatment plan may be best for you.  https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist/find-epilepsy-center There are also many different devices that can help detect seizures and notify someone to help respond. Review our seizure alert device factsheet, with your healthcare team to see if an alert device is an option for you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf . For additional information regarding nocturnal seizures and safety while sleeping, visit: https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/safety-while-sleeping . You may also want to consider keeping a journal or a diary, to help track your seizures and document how you are feeling, which can be shared with members of your healthcare team. They can help identify or recognize any patterns, allowing you to modify (if needed) your treatment plan, behavior, or lifestyle appropriately. https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary . Additionally, you may always contact our 24/7 Helpline, where trained information specialists are available to answer your questions, offer help,hope, support, guidance, and access to national and local resources. 1-800-332-1000, contactus@efa.org. epilepsy.com/helpline . Or contact your local Epilepsy Foundation: https://www.epilepsy.com/affiliates