New ideas, anybody?

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Hello! I am a 25 years old girl, and have had epilepsy for 19 years now. It started as absence seizures when I was around six years old, and then developed to generalized tonic-clonic seizures when I was around 14 (about a years or so after I hit puberty if anyone was connecting those dots..). I was struggling to find the right medications from the years 14-16, but then I got on Zarontin (ethosuximide) and it worked wonders! So the following years, from 17-22 I had some years that were seizure free, and some years where I had the "typical seizure after drinking alcohol and thinking I could live like a normal person".. I actually got so fine that my doctor wanted to take me off the drugs, and so we did. Safe to say it didn't work. The last couple of years have been just horrible. In 2017 I had 6 seizures and in 2018 I had 21 seizures. In 2019 I only had 2, but the drugs I was, and still am on are making me so "drugged" out that I feel I have "lost" all my intelligens. I am also exhausted all the the time. I have severely damaged memory, I speak like a drunk person and I feel I can't "keep up" with the world. I lay in bed almost all day every day. I've also had 3 seizures so far in 2020. - I've tried Lamictal, Topimax, Keppra, Orfiril in the past, and now I am taking 750 mg Zarontin, 500 mg Zonegran (qutting this gradually as it is not working) and 800 mg Zebinix. - I've had CT scans, MRI scans, hormonal testing, my blood tested for oxygen levels, blood pressure tests and had several EKG's and of course EEG's. They've tested my breathing, and find nothing wrong with my lungs. But they did find that I had a deviated septum.. They find eplieptic activity on the EEG, but nothing wrong on the bloodwork etc. My sleep habits, eating habits are all good now. And I don't drink alcohol at all anymore. Never done drugs. I should also mention that I had cancer as a child, and did get chemo. SO! I was wondering if there is anything else I could do? Or anything else I should test? Medication I should try? Any ideas maybe my doctors haven't thought of? I am getting desperate, because I feel like my life is passing by and I don't have the energy or health to live it. I'd be so happy for any effort to help! BTW: I'm from not from America, so I'm sorry for incorrect spelling/grammar!

Comments

I'm not sure what country you

Submitted by birdman on Mon, 2020-04-06 - 21:03

I'm not sure what country you are from. Do you know if there are epilepsy specialists in your country? It sounds like you have been through enough medications to suggest that your seizures are "refractory" or not completely controllable with medications. I've usually found epilepsy specialists to be a little more open to alternative treatments and not so pushy with the medications. Is Vagus Nerve Stimulation (VNS) or Responsive Nerve Stimulation (RNS) available where you live? Keep records of the medications and seizures; this information comes in helpful when facing doctors who consider alternative treatment.Mike

Thank you for sharing your

Submitted by MJulie on Tue, 2020-04-07 - 05:29

Thank you for sharing your ideas and tips! I agree with you that in you saying that my epilepsy probably won't be controlled with medications.. I am from Norway. We have a center for epilepsy here (where all the specialist work), and all my epilepsy treatments and follow-ups are at the center. I've heard about the VNS, but not about the RNS! So thank you :-) I will definitely look into it and talk to my doctor about it. - Julie.

Hi,Thank you for posting, it

Submitted by Anonymous on Tue, 2020-04-07 - 09:22

Hi,Thank you for posting, it sounds like you’ve been through a lot. a lot. It's important to remember that you are not alone, and we are here to help support you. We know that living with epilepsy is more than seizures, it also means learning how to handle the way epilepsy affects your life including your physical well-being, social and emotional health. https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health . One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support resources available for you and your family in your country, please visit: https://www.epilepsi.no/ . Treatment and how the body may react to certain medications varies for each individual. The goal of treatment with medicines should be –No Seizures and No Side Effects. However, we know that some individuals may experience too many side effects, that are very bothersome or cause other health problems. Cognitive problems - problems with thinking,remembering, paying attention or concentrating, or other symptoms – can be due to side effects of some seizure medicines. For additional information about the effects of epilepsy and seizure medicines on cognition, visit: https://www.epilepsy.com/learn/challenges-epilepsy . As Michael suggested in his comment you may want to consider seeking more specialized care for your epilepsy by seeing an epileptologist, (epilepsy specialist). We are glad to hear that you that you’re connected to an epilepsy center in your country. It’s important that you are continuing to follow-up with your healthcare team to address these challenges as well as any changes in seizure types/frequency, symptoms, moods & behaviors. Be open and honest about how you all are feeling, and how this is affecting your health and daily life. Many clinics and offices are now offering telehealth options for non-emergencies, or routine check-in appointments. Ask your doctor if you can schedule a time to talk via phone/ other telehealth resources you can utilize to discuss this further, or if they can make any additional recommendations. It may be helpful to keep a journal or a diary to help keep track of your seizures and document how you’re feeling. My Seizure Diary can be used to organize your health issues, manage medications, record side effects, other therapies or personal experiences and more, which can be shared with members of your healthcare team. https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary

Hi,Thank you for posting, it sounds like you’ve been through a lot. a lot. It's important to remember that you are not alone, and we are here to help support you. We know that living with epilepsy is more than seizures, it also means learning how to handle the way epilepsy affects your life including your physical well-being, social and emotional health. https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health . One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support resources available for you and your family in your country, please visit: https://www.epilepsi.no/ . Treatment and how the body may react to certain medications varies for each individual. The goal of treatment with medicines should be –No Seizures and No Side Effects. However, we know that some individuals may experience too many side effects, that are very bothersome or cause other health problems. Cognitive problems - problems with thinking,remembering, paying attention or concentrating, or other symptoms – can be due to side effects of some seizure medicines. For additional information about the effects of epilepsy and seizure medicines on cognition, visit:  https://www.epilepsy.com/learn/challenges-epilepsy . As Michael suggested in his comment you may want to consider seeking more specialized care for your epilepsy by seeing an epileptologist, (epilepsy specialist). We are glad to hear that you that you’re connected to an epilepsy center in your country.  It’s important that you are continuing to follow-up with your healthcare team to address these challenges as well as any changes in seizure types/frequency, symptoms, moods & behaviors. Be open and honest about how you all are feeling, and how this is affecting your health and daily life. Many clinics and offices are now offering telehealth options for non-emergencies, or routine check-in appointments. Ask your doctor if you can schedule a time to talk via phone/ other telehealth resources you can utilize to discuss this further, or if they can make any additional recommendations. It may be helpful to keep a journal or a diary to help keep track of your seizures and document how you’re feeling. My Seizure Diary can be used to organize your health issues, manage medications, record side effects, other therapies or personal experiences and more, which can be shared with members of your healthcare team. https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary 

Hi,Thank you for posting, it sounds like you’ve been through a lot. a lot. It's important to remember that you are not alone, and we are here to help support you. We know that living with epilepsy is more than seizures, it also means learning how to handle the way epilepsy affects your life including your physical well-being, social and emotional health. https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health . One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support resources available for you and your family in your country, please visit: https://www.epilepsi.no/ . Treatment and how the body may react to certain medications varies for each individual. The goal of treatment with medicines should be –No Seizures and No Side Effects. However, we know that some individuals may experience too many side effects, that are very bothersome or cause other health problems. Cognitive problems - problems with thinking,remembering, paying attention or concentrating, or other symptoms – can be due to side effects of some seizure medicines. For additional information about the effects of epilepsy and seizure medicines on cognition, visit: https://www.epilepsy.com/learn/challenges-epilepsy . As Michael suggested in his comment you may want to consider seeking more specialized care for your epilepsy by seeing an epileptologist, (epilepsy specialist). We are glad to hear that you that you’re connected to an epilepsy center in your country. It’s important that you are continuing to follow-up with your healthcare team to address these challenges as well as any changes in seizure types/frequency, symptoms, moods & behaviors. Be open and honest about how you all are feeling, and how this is affecting your health and daily life. Many clinics and offices are now offering telehealth options for non-emergencies, or routine check-in appointments. Ask your doctor if you can schedule a time to talk via phone/ other telehealth resources you can utilize to discuss this further, or if they can make any additional recommendations. It may be helpful to keep a journal or a diary to help keep track of your seizures and document how you’re feeling. My Seizure Diary can be used to organize your health issues, manage medications, record side effects, other therapies or personal experiences and more, which can be shared with members of your healthcare team. https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diary