Disclaimer: I wrote this post to share the side effects of a medication I was taking. It should be used for informational use only because I am not a doctor and is not a substitute for professional medical advice. You should always consult your medical team before stopping a medication.
When you have epilepsy, seizure medication is often necessary to control your seizures because there is no cure for epilepsy, and the only way to have fewer seizures is by taking medication or changing your diet. I am not currently having active seizures, but I have had them in the past, and for several years, I needed to take medication to prevent them, which worked well until I no longer needed them, and it started to cause a bunch of horrible side effects. My current neurologist has agreed that if I am not having active seizures, I probably don’t need to be on medication, but my previous one did not understand Hydrocephalus and wanted me to take all these meds that weren’t necessary because my EEG was abnormal. My EEG is never going to be normal because of all my neurological issues, and my doctor did not understand that. I stopped taking my seizure medication before I saw a new doctor who agreed that I didn’t need them because my previous one was not listening to my concerns, and it was making me unwell. Why did I stop taking seizure medication against my doctor’s advice? In this post, I am going to talk about a few side effects I experienced when I was taking a medication I did not need.
I could not sleep- When you live with pain, it is completely normal to struggle with insomnia because pain sometimes prevents you from sleeping but the fatigue I was experiencing went way beyond what I would normally experience. My medication prevented me from sleeping at all, and I was sleeping about four to five hours a day (sometimes less than that), and the only time I got decent sleep was when I got so tired that I quite literally crashed. At first, I thought my pain was keeping me up, and that was part of my new normal until I stopped taking it, and my sleep improved. I still sometimes struggle to fall asleep because of pain, and there is nothing I can do to change that, but I do sleep much better now that I am off my seizure medication. I struggled with poor sleep for years, and I wish I had known that my medication was to blame a lot sooner because would have saved me a lot of sleepless nights.
My heart raced constantly- When I was struggling with sleep, I had several nights where I woke up out of a dead sleep, sweating because my heart was racing so fast, and it felt like I just went on a run. I assumed that my heart was racing because insomnia affects your heart health, but a racing heart rate should have been a red flag. Now that I reflect back on it, I think that my poor sleep probably played a role in my elevated heart rate, which I don’t think was a heart issue, and it was my meds. My heart rate still sometimes elevates because when you live with pain, it’s normal to have an elevated heart rate on high-pain days, but it’s not constant. After I stopped taking my seizure medication, my heart stopped racing constantly, and the only time it’s typically elevated is when I have higher pain or am exercising. My racing heart rate should have been a sign that something was wrong, and I am surprised I didn’t end up having a serious medical issue.
My pain was much worse– When I was taking seizure medication, I had much worse migraine pain that never seemed to go away. I got used to severe migraine pain all the time and assumed that this was how life was going to be from now on. It wasn’t until I stopped taking my seizure medication that I realized my preventative medication was not the problem, because my pain improved when I stopped taking my seizure medication. I still get migraine attacks because I am more prone to them, and that is not something I can change, but I do get a lot less. I think that my seizure medication was affecting the effectiveness of my preventative, causing it not to work as well, and I wish I had figured that out sooner.
Medication is necessary for some people with epilepsy, and most people have to take seizure medication their entire lives. I have never stopped taking any medication against my doctors’ advice because it’s important to listen to your doctors, and this is the first time I have ever done that. I stopped my seizure medication against my doctor’s advice because my previous neurologist wasn’t listening to me and felt that it was the only way for me to feel better. When I started taking medication for seizures, it worked, and I needed them, but it is possible to outgrow seizures and not need medication anymore. Medication can improve and save lives, but if you are taking something you don’t really need, it can do quite the opposite and hurt your health. Listen to your body and express your concerns to your medical team, and if they aren’t listening to you, it’s okay to get a second opinion. This is not a complete list of all the side effects I experienced when I was taking an unnecessary medication, and I was constantly experiencing new pain that I didn’t know the cause of. Have you ever had to stop taking medication against your doctor’s advice? If you liked this post, please leave a comment below and share it with your friends.
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