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 less seizure is by taking medication or changing your diet. I am not currently having active seizure, 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 caused a bunch of horrible side effects. My current neurologist has agreed that if I am not having active seizures that 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 will never be normal because I have a lot of neurological problems that not all doctors understand. 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. My seizure medication was making me sicker and I immediately felt better when I stopped taking them. 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 hours to five hours a day (sometimes less than that) and the only time I got decent sleep was when I go so tired that I quite literally crashed. At first, I thought my pain was keeping me up and that was just a reality of my life going forward 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 would have known that my medication was to blame a lot sooner. My poor sleep affected every aspect of my life and I was never motivated to do anything and ate poorly which caused me to gain weight because sleep deprivation affects your eating habits.
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 and I was not sleeping well but it should have been a red flag. Now that I think back, on it I think that my poor sleep probably played a role in my elevated heart rate, but I am convinced it’s mostly because I was taking a medication I didn’t need anymore and I should have never assumed that was normal. My heart rate still sometimes elevates because that when you live with pain it’s normal to have an elevated heart rate on high pain days but it’s different now. 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 right because it was concerning, and I just thought everyone experienced that.
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 long was going to be from now on and that there was no medication in the world that could help improve my pain levels. 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 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 would have 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. I don’t know if what I was experiencing was something that my shunt was doing because I did start having problems shortly after a shunt surgery and not really seizures, but I do know that I feel human again not taking them. 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 might need to find a new doctor. This is not a complete 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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