Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Medicine Issues
Tue, 07/16/2019 - 02:27I will try to make this short and simple, but its complicated. I have minor nocturnal seizures, if I don't take meds. I was first on Tegretol (7yrs) then Lamictal (20yrs) and Zonisamide with Lamictal for a few of those 20 years. I got off of it when it caused stomach issues leading to a temporary Alkaline Diet.
Seven years ago I became allergic to GSK Lamictal from a non-active ingredient. Hives, body swelling, other weird allergies. Because I did not have insurance, at the time, I switched back on to Tegretol, which I has been on before, but went off because of the unlike side effects of depression/anxiety.
Now things seem to be repeating. Hives and swelling, similar to before, seemed like it was being caused by supplements or H pylori first, but now seem to be caused by the Tegretol extended release that I'm on. My Dr. has put me on regular tegretol to maybe see if it is an inactive ingredient, but I'm not thrilled with the side effects either.
Mainly I'm wondering if something is wrong with my gut, because right now without probiotics antihistamines don't seem to work. The Naturopathic Doctor that I'm seeing is suggesting things like CBD and/or Neurofeedback Therapy to lower the tegretol amounts. I haven't kept up with either one lately and am wondering if this is the path I am going to have to take because I can't seem to stop becoming allergic to things. I'm not against switching meds altogether, but am just not sure as to what to do.
Comments
Carbamazepine
Submitted by Cfc1011 on Mon, 2019-10-14 - 10:45
Carbamazepine
Hi Courtney3, Thanks so much
Submitted by Anonymous on Tue, 2019-07-16 - 13:17
Hi Courtney3, Thanks so much for posting, it’s sounds like you’ve been through a lot. It’s important that you discuss your concerns anychanges in seizure types, frequency, behaviors, side effects and symptoms to your healthcare team to determine what individual treatment is best for you. https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdfhttps://www.epilepsy.com/learn/treating-seizures-and-epilepsyhttps://www.epilepsy.com/living-epilepsy/toolbox/treatment-factsheets Learn more here about seizure medications and side effects:https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-medication-listhttps://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effectshttps://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/drug-interactionsFor more information about complementary health approaches to epilepsy, please visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/complementary-health-approacheshttps://www.epilepsy.com/learn/treating-seizures-and-epilepsy/other-treatment-approaches/herbal-therapyFor more information on CBD oil please visit: https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/other-treatment-approaches/medical-marijuana-and-epilepsyFor more information regarding seizure safety at night please visit, https://www.epilepsy.com/learn/seizure-first-aid-and-safety/staying-safe/safety-while-sleeping Additionally, you may want to consider with your doctor having a device that can help track seizures, by visiting:https://www.dannydid.org/and by keeping a seizure diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryas another self-management tool. These tools may be helpful in identifying & tracking seizures, other symptoms, managing medication & other therapies, recognizing triggers and health events that may affect seizures and wellness, which you can share with your providers.https://www.epilepsy.com/learn/managing-your-epilepsySometimes it's helpful to connect with other people who live with epilepsy, to ask questions, share experiences, find & give support to each other, by contacting your local Epilepsy Foundation at: epilepsy.com/localsupport , to find support groups, events, and programs in your community. Additionally our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000, contactus@efa.org epilepsy.com/helpline , can assist in connecting you to resources, provide referrals and additional support.