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Reminder: This is my experience with side effects from seizure medication I was taking, but I am not a doctor and is not a substitute for individual medical care or advice. You should always consult your doctor before making changes to your medication.
November is Epilepsy Awareness Month! When you have Hydrocephalus, you are at a slightly higher risk of developing a seizure disorder than someone without Hydrocephalus, but seizures can happen to anyone. I had spent most of my life without ever having seizure and didn’t have my first one until I was about eighteen years old and since then I have been taking medication to prevent seizure. My medication worked for several years, and I had no reason to come off of it until recently when it started to give me horrible side effects that was harmful to my health. I told my doctor about these side effects, but because my EEG was abnormal, he was convinced that I still needed the meds and refused. I went to a new neurologist that agreed if I hadn’t been taking my medication for months without having any seizure that I probably didn’t need them and officially took me off of them. I had taken myself off the medication months before my new neurologist told me I could because it was making me ill and was a little scary. Why would I stop taking medication against my doctor’s advice? In this post, I am going to talk about some of the side effects I was experiencing because of my medication.
I was not sleeping– When you have chronic pain, sleep deprivation is a part of life because pain sometimes prevents you from getting good quality rest and it’s not unusual for someone with chronic pain to be sleep-deprived. When I was taking my seizure medication, I was not sleeping and most days I slept around four to five hours a night and it wasn’t until I become so exhausted that my body quite literally couldn’t handle it and I crashed. I tried everything I could think of, but nothing made significant difference and I had poor sleep regardless of how many sleep supplements I was taking. My doctor told me that I should try and take my seizure medication earlier in the evening rather than later because it can affect sleep, but it wasn’t until I forgot to take my medication one day that I realized my medication was the problem. I still have days when I am sleep deprived because I live with chronic pain but it’s so much better and most of the time, I am getting a good amount of sleep.
My heart was racing almost constantly- If you live with chronic pain, it is normal to have an elevated rate on higher pain days but it’s not normal for you to feel like you ran a marathon all of the time. My heart was racing almost constantly but didn’t think anything of it because I am a very anxious girl and assumed that it was my anxiety that was out of control, but it wasn’t, and my medication was doing that. I assumed that my heart rate was elevated because I was sleep deprived which probably did play a role, but it should have been a red flag when I was waking up from a dead sleep every night sweating and feeling like I just exercised. Some nights my heart was beating so fast that it was kind of scary and I am so glad it didn’t cause any other health problems. My heart rate sometimes is still slightly elevated on high pain days which is normal but most of the time I only have an elevated heart-rate when I am exercising.
My migraine pain worsened– When you have Hydrocephalus you are more prone to headache and migraine disorders and it’s not unusual for people with this condition to get a lot of headaches. I have been on preventative medication to treat migraine for a few years but never felt like it worked very well because I almost always had a migraine and assumed my preventative just didn’t work but that within itself should have said to me that something wasn’t right. Preventative medication does not totally cure migraine and you will still get migraine attacks while being on medication I still get migraine attacks because I am more prone to headache disorders and can’t change my disability, but I do have moments when I am not in pain which was extremely rare when I was taking seizure medication. When I stopped taking my medication the frequency of my migraine attacks went way down and I think it’s been weeks since I had a migraine.
Medication is necessary for some disabled people, and I am not usually the type to stop taking medication against my doctor’s advice but in this instance, it was the best thing I could have done for my health. Most people with seizure disorders will need medication their whole lives and there is no shame in taking medication that improve your health, but some people will out-grow seizures and will be able to be taken off their medication. I took the same medication and dosage for long time, and it worked until I didn’t need it anymore and it started to give me side-effects. My neurologist did know that I was not taking my medication because you should never stop a medication without consulting your doctor but was convinced that I needed to be on medication because my EEG was abnormal which will always be the case when you have Hydrocephalus. A new neurologist is the best thing that could have happened to me and the only regret I have is not doing it sooner. What medication side effects have you experienced from seizure medication?
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