Quitting my medicine was wrong

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I was diagnosed with epilepsy at 19 years old. I am 33 now. Until one month ago I have been treated with tegretol (carbamazepine). In December I decided that I wanted to check my health status, so I did all of the necessary medical tests (MRI, EEG, and heart and blood tests). Since all of my medical exams came out within normal parameters, the neurologist that followed me came up with the conclusion that I was cured so she asked me to gradually quit my medicine. I reduced the doses of my medicine for three months and then at the third month I had to quit taking it. I was scared to stop taking my medicine because I had bad experiences on doing that before. However, I decided to follow the doctor's advise so I quit. Four days after i stopped my medicine, while having dinner with my husband I had a seizure, which was followed by another seizure that same night. I felt very sick. I had a strong headache and for the first time in my seizure history I throw out after the seizure. I called my doctor and she told me to take my medicines again. So I started taking one pill a day. After 5 days, I am still feeling weak and having nausea all day long. Cannot hide that I am also feeling a little scared. My family kept saying to me that I shouldn't quit my medicines, but I followed the doctor's advise, and inside me I was really hoping that I was going to be well, but I wasn't.

Comments

I’m so sorry that happened to

Submitted by Patriotrehab on Sat, 2020-04-18 - 17:44

I’m so sorry that happened to you. I just don’t understand why so many neurologists do that when they know that it is a very low chance that someone will ever be able to stop taking their AEDs. I will never feel comfortable going off my medication because I tried to do it before on my own when my neurologists mocked me about whether my seizures were real and all that did was increase my seizures and finally prove to them on my EEGs that I had seizures coming from four lobes of my brain. Only you know whether you and your doctor can get past this and continue working together, but I do think at minimum you need to express to her how she was way too confident in suggesting that you were cured and that if she’s going to be trying that kind of thing out on patients in the future she needs to be more cautious in her experiments because of the harm it does when it goes wrong. If she apologizes and you feel you can continue working with her, then great, but you may have trouble trusting her now that she did this if she doesn’t accept responsibility. I know my new epilepsy specialist and I are still working through a bad first impression, even though he apologized when confronted on it, I don’t know that he completely “gets it”.

Trust has been compromised.

Submitted by Ina_5e9b1353731fd on Sat, 2020-04-18 - 19:43

Trust has been compromised. That is why I am going to see another neurologist. Hopefully this one will be able to fully understand and take care of me.

Hi,Thank you for posting and

Submitted by Anonymous on Mon, 2020-04-20 - 09:34

Hi,Thank you for posting and sharing your story, it sounds like you’ve been through a lot. It can be challenging to find a healthcare team that you're comfortable with, but if you feel you can’t talk openly with your team or aren't working towards the same goal or feel you can trust, it’s time to get a second opinion. https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions . We are sorry to hear you had such a negative experience with your previous doctor and are glad that you are going to see a different neurologist. It’s important that you’re following -up with your new neurologist to discuss your concerns and if you continue to experience any changes in seizure types/ frequency, side effects, symptoms, mood or behaviors, to help determine what individual treatment plan is best for you. Be open and honest about how you all are feeling, and how this is affecting your health and daily life. https://www.epilepsy.com/learn/challenges-epilepsy . Many clinics and offices are now offering telemedicine options for non-emergencies, or routine check-in appointments. Ask your doctor’s if you can schedule a time to talk via phone/ other medicine resources you can utilize, or if they can make any additional recommendations for you. You may want to consider keeping a journal or a diary to documentow you’re feeling and the symptoms you describe experiencing in detail, (like you’ve done in your post), which will be very helpful to review with your doctors. My Seizure Diary, can be used to organize health issues, track seizures, manage medications, develop seizure response plans, and more, which can be share with your healthcare team: 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

Hi,Thank you for posting and sharing your story, it sounds like you’ve been through a lot. It can be challenging to find a healthcare team that you're comfortable with, but if you feel you can’t talk openly with your team or aren't working towards the same goal or feel you can trust, it’s time to get a second opinion. https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions  . We are sorry to hear you had such a negative experience with your previous doctor and are glad that you are going to see a different neurologist. It’s important that you’re following -up with your new neurologist to discuss your concerns and if you continue to experience any changes in seizure types/ frequency, side effects, symptoms, mood or behaviors, to help determine what individual treatment plan is best for you. Be open and honest about how you all are feeling, and how this is affecting your health and daily life. https://www.epilepsy.com/learn/challenges-epilepsy .  Many clinics and offices are now offering telemedicine options for non-emergencies, or routine check-in appointments. Ask your doctor’s if you can schedule a time to talk via phone/ other medicine resources you can utilize, or if they can make any additional recommendations for you. You may want to consider keeping a journal or a diary to documentow you’re feeling and the symptoms you describe experiencing in detail, (like you’ve done in your post), which will be very helpful to review with your doctors. My Seizure Diary, can be used to organize health issues, track seizures, manage medications, develop seizure response plans, and more, which can be share with your healthcare team: 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

Hi,Thank you for posting and sharing your story, it sounds like you’ve been through a lot. It can be challenging to find a healthcare team that you're comfortable with, but if you feel you can’t talk openly with your team or aren't working towards the same goal or feel you can trust, it’s time to get a second opinion. https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions . We are sorry to hear you had such a negative experience with your previous doctor and are glad that you are going to see a different neurologist. It’s important that you’re following -up with your new neurologist to discuss your concerns and if you continue to experience any changes in seizure types/ frequency, side effects, symptoms, mood or behaviors, to help determine what individual treatment plan is best for you. Be open and honest about how you all are feeling, and how this is affecting your health and daily life. https://www.epilepsy.com/learn/challenges-epilepsy . Many clinics and offices are now offering telemedicine options for non-emergencies, or routine check-in appointments. Ask your doctor’s if you can schedule a time to talk via phone/ other medicine resources you can utilize, or if they can make any additional recommendations for you. You may want to consider keeping a journal or a diary to documentow you’re feeling and the symptoms you describe experiencing in detail, (like you’ve done in your post), which will be very helpful to review with your doctors. My Seizure Diary, can be used to organize health issues, track seizures, manage medications, develop seizure response plans, and more, which can be share with your healthcare team: 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