My experience with topamax. Do NOT take this medication!

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This is by far the worst medication I have ever taken, period. Topamax has stolen three years from my life, and has affected me with aphasia, and long+short term memory loss. I stopped taking it about a week ago and I’m still having withdrawal effects... The withdrawal gave me seizures, and I’ve never even had one before then (I was taking topamax for migraines). I’ve been living in what feels like a dream, and my consciousness is sitting back, watching my life and it constantly feels like I’m trying to claw my way back to reality. Thank God these side effects go away... Dehydration, paranoia, anxiety, loss of touch with reality, heart palpitations, extreme mood changes etc... I’ve gained back almost all of my cognitive skills (thankfully), but I only wish I stopped taking topamax so much sooner. The world is so much brighter and alive now!! Do yourself a favor and just take something else... and make sure to do your research before you put anything into your body. Best of luck to anyone who has been on Topirimate.

Comments

Hi ali826, Thanks so much for

Submitted by Anonymous on Wed, 2019-07-17 - 10:56

Hi ali826, Thanks so much for sharing about your experience, it sounds like you’ve been through a lot. It’s important that you discussed your concerns and any changes in seizure types, frequency, behaviors, side effects and symptoms to your healthcare team to determine what individual treatment is best for you. Treatment varies for each individual, so it’s important that those living with epilepsy consult with their healthcare team to determine what treatment is best for them and prior to making any changes to their medications.https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf https://www.epilepsy.com/learn/treating-seizures-and-epilepsy For more information regarding Topamax and side effects, please visit:https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects https://www.epilepsy.com/medications/topiramate https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/stopping-medication 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-diary as 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/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf It is 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-toolsYou may also contact our Epilepsy and Seizures 24/7 Helpline:1-800-332-1000, contactus@efa.org epilepsy.com/helpline , where a trained information specialist can connect you to resources, provide referrals and additional support.

Hi ali826, Thanks so much for sharing about your experience, it sounds like you’ve been through a lot. It’s important that you discussed your concerns and any changes in seizure types, frequency, behaviors, side effects and symptoms to your healthcare team to determine what individual treatment is best for you. Treatment varies for each individual, so it’s important that those living with epilepsy consult with their healthcare team to determine what treatment is best for them and prior to making any changes to their medications.https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf https://www.epilepsy.com/learn/treating-seizures-and-epilepsy For more information regarding Topamax and side effects, please visit:https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects https://www.epilepsy.com/medications/topiramate https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/stopping-medication 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-diary as 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/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf It is 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-toolsYou may also contact our Epilepsy and Seizures 24/7 Helpline:1-800-332-1000, contactus@efa.org  epilepsy.com/helpline , where a trained information specialist can connect you to resources,  provide referrals and additional support.  

Hi ali826, Thanks so much for sharing about your experience, it sounds like you’ve been through a lot. It’s important that you discussed your concerns and any changes in seizure types, frequency, behaviors, side effects and symptoms to your healthcare team to determine what individual treatment is best for you. Treatment varies for each individual, so it’s important that those living with epilepsy consult with their healthcare team to determine what treatment is best for them and prior to making any changes to their medications.https://www.epilepsy.com/sites/core/files/atoms/files/pg2L_HealthCareVisits_09-2018.pdf https://www.epilepsy.com/learn/treating-seizures-and-epilepsy For more information regarding Topamax and side effects, please visit:https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/side-effects https://www.epilepsy.com/medications/topiramate https://www.epilepsy.com/learn/treating-seizures-and-epilepsy/seizure-and-epilepsy-medicines/stopping-medication 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-diary as 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/sites/core/files/atoms/files/DAS100_Seizure_Alert_Devices_09-2018_FINAL2.pdf It is 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-toolsYou may also contact our Epilepsy and Seizures 24/7 Helpline:1-800-332-1000, contactus@efa.org epilepsy.com/helpline , where a trained information specialist can connect you to resources, provide referrals and additional support.

For me, I would walk on fire

Submitted by MidwesternPatient on Sat, 2020-01-11 - 08:45

For me, I would walk on fire to get this medication. It has been the Topiramate that has GIVEN me my life BACK so it is not good to tell everyone not to take it based only on your experience--they can factor it in but do their research as you said. Could it have been dose related for you? Were you slowly tapered off? I have migraines and focal seizures that resulted in terrible confusion--to the point of getting lost, not recognizing people or what I am doing... I thought I was losing my mind or starting early Alzheimer's which is what caused my internist to send me to a neurologist whose workup revealed the seizure activity. (Cognitive testing and MRIs ruled out dementias). She put me on generic Topamax and my mind started clearing up in a week, my memory and thinking returned to a sharper state, and my daily migraines and headaches almost vanished to an occasional headache! Night and day difference. Yes my hands tingle sometimes, but not for long. I am also on a low dose--started at 25 mg at night, but still had a few weird visual and migraine issues, she bumped me to 50 mg at night after 2 weeks and it has been perfect treatment for me. The only issue I have had and what brought me to this forum, is the switch of generic manufacturers from Zydus at Walgreens to Sun at Costco. I don't feel the Sun is as strong and want to see if others have found this. I may investigate getting the brand name to eliminate this bouncing around.