Withdrawl

CDC funded page

Not a CDC funded Page

So, yeah. I've never really talked to anyone who really knew anything about epilepsy besides my neurologist. I recently was referred to a specialist and he wants to take me off all my medicine at once while I'm in a monitoring unit. We were trying a different medicine and of course it's the only medicine in the world I have ever been allergic to. So now he wants to do it cold turkey. I am terrified. I don't know what the effects will be but they can't be good. I just want to know if someone could just give me a guess of crap I would go through. I don't take any pain meds so that's not a problem. 600 mg of Lamictal XR twice a day, 100 mg of Vimpat twice a day, and Effexor twice a day. Any ideas?

Comments

I'm assuming you mean an EEG

Submitted by birdman on Sun, 2019-09-22 - 21:10

I'm assuming you mean an EEG monitoring unit. Your in good hands. I've been through EEG monitoring five times in my life. At home I would be nervous about stopping my meds since I've been in status epilepticus twice. But in the monitoring unit you are under continuous audio /video monitoring. You have a button to press when seizures happen which doesn't just call upon the nurse, but gets more immediate medical attention. The staff is well prepared to treat the seizures so that they don't impact you as hard as they would if you had them at home. The seizures may be uncomfortable, but being off of medication should make you more relaxed and comfortable. And there must be a reason that the specialist is putting you through this testing. I'm sure doctor is exploring alternative treatments with you and that is something else to look forward to. Mike

Hi Nrwilson, Thanks so much

Submitted by Anonymous on Mon, 2019-09-23 - 10:27

Hi Nrwilson, Thanks so much for posting and understand your concerns. As Mike mentioned in his comment, your new doctor may be exploring new treatment options & needs to have additional testing. It’s important that voice your concerns and that you feel you're able to talk openly with your healthcare team, to ensure you're working towards the same goals.For additional information regarding Epilepsy Monitoring Unites (EMU), please visit: https://www.epilepsy.com/article/2014/10/safety-epilepsy-monitoring-unithttps://www.epilepsy.com/article/2014/10/safety-concerns-discharge-epilepsy-monitoring-unit You may want to consider keeping a seizure diary, or journal. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for not only tracking seizures, recording your medical history, medications, side effects, moods, behaviors & triggers, which can be shared with your healthcare team. My Seizure Diary also helps you remember what to do, you can have reminders of when to take your medicines, when to refill a prescription, or when you have medical appointments or tests. You can track changes over time, keep records of your medications, and create a Seizure Response Plan or Action Plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms to share with your family, friends and healthcare team, which is a helpful tool for those who are close to you to understand what do if you have seizure. Additionally, you may want to review our seizure alert device factsheet with your doctor, to see if a seizure alert device is an option for you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfIt’s also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health The Wellness Institute: epilepsy.com/wellness ,has many helpful and easy-to-use tips &resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family. For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-toolsAdditionally, you may contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org, where a trained information specialist can connect you to resources, provide referrals and additional support.epilepsy.com/helpline Or contact your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community.

Hi Nrwilson,  Thanks so much for posting and understand your concerns. As Mike mentioned in his comment, your new doctor may be exploring new treatment options & needs to have additional testing. It’s important that voice your concerns and that you feel you're able to talk openly with your healthcare team, to ensure you're working towards the same goals.For additional information regarding Epilepsy Monitoring Unites (EMU), please visit:  https://www.epilepsy.com/article/2014/10/safety-epilepsy-monitoring-unithttps://www.epilepsy.com/article/2014/10/safety-concerns-discharge-epilepsy-monitoring-unit You may want to consider keeping a seizure diary, or journal. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for not only tracking seizures, recording your medical history, medications, side effects, moods, behaviors & triggers, which can be shared with your healthcare team. My Seizure Diary also helps you remember what to do,  you can have reminders of when to take your medicines, when to refill a prescription, or when you have medical appointments or tests. You can track changes over time, keep records of your medications, and create a Seizure Response Plan or Action Plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms  to share with your family, friends and healthcare team, which is a helpful tool for those who are close to you to understand what do if you have seizure. Additionally, you may want to review our seizure alert device factsheet with your doctor, to see if a seizure alert device is an option for you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfIt’s also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important:  https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health   The Wellness Institute:  epilepsy.com/wellness  ,has many helpful and easy-to-use tips &resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family.  For practical & effective strategies to enhance your well-being, learn more here:  https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-toolsAdditionally, you may contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org, where a trained information specialist can connect you to resources, provide referrals and additional support.epilepsy.com/helpline  Or contact your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community.  

Hi Nrwilson, Thanks so much for posting and understand your concerns. As Mike mentioned in his comment, your new doctor may be exploring new treatment options & needs to have additional testing. It’s important that voice your concerns and that you feel you're able to talk openly with your healthcare team, to ensure you're working towards the same goals.For additional information regarding Epilepsy Monitoring Unites (EMU), please visit: https://www.epilepsy.com/article/2014/10/safety-epilepsy-monitoring-unithttps://www.epilepsy.com/article/2014/10/safety-concerns-discharge-epilepsy-monitoring-unit You may want to consider keeping a seizure diary, or journal. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool for not only tracking seizures, recording your medical history, medications, side effects, moods, behaviors & triggers, which can be shared with your healthcare team. My Seizure Diary also helps you remember what to do, you can have reminders of when to take your medicines, when to refill a prescription, or when you have medical appointments or tests. You can track changes over time, keep records of your medications, and create a Seizure Response Plan or Action Plan: https://www.epilepsy.com/living-epilepsy/toolbox/seizure-forms to share with your family, friends and healthcare team, which is a helpful tool for those who are close to you to understand what do if you have seizure. Additionally, you may want to review our seizure alert device factsheet with your doctor, to see if a seizure alert device is an option for you: https://www.epilepsy.com/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdfIt’s also important to recognize that epilepsy is more than just seizures, overall well-being and emotional health is just as important: https://www.epilepsy.com/living-epilepsy/healthy-living/emotional-health The Wellness Institute: epilepsy.com/wellness ,has many helpful and easy-to-use tips &resources for maintaining a healthy lifestyle and maximizing the quality of life for you & your family. For practical & effective strategies to enhance your well-being, learn more here: https://www.epilepsy.com/living-epilepsy/toolbox/wellness-support-toolsAdditionally, you may contact our Epilepsy and Seizures 24/7 Helpline: 1-800-332-1000 contactus@efa.org, where a trained information specialist can connect you to resources, provide referrals and additional support.epilepsy.com/helpline Or contact your local Epilepsy Foundation at: https://www.epilepsy.com/affiliates to find support groups, events, and programs in your community.