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Could I have been misdiagnosed?
Mon, 10/07/2019 - 18:14I was wondering if anybody could help me,
4 years ago when I was 12 we went on a camping trip and the morning after we got there we got up extremely early, It was so hot and all I had for breakfast was waffles and ice-cream and I had also had very little sleep the previous night (4 hours at most) so anyway after breakfast we went to the water park and after about an hour or so of going on water slides and stuff, I was waiting in line to go down another slide when I all of a sudden collapsed out of nowhere. when I collapsed I fell back down 3 steps and hit my head pretty hard and apparently started convulsing, so paramedics came and put me on oxygen and after about an hour later I was fine again. The next few days after that I felt extremely nauseous. But anyway a few days later we got home and I was totally fine and healthy again. Then 2 years later we went on holiday again to the beach, On the second day there we were on the beach all day in the sun and again I had not had much sleep or much to eat. When we got back to the hotel I was watching TV and was just about to eat when I started seeing things, so I lay down on the bed and a few minutes later I didn't know where I was and it felt like the walls were closing in on me, my mom said that I was trying to talk but I wasn't making sense and that was the last I remember, but my mom told me that I walked to the car on my own and while we were in the car I sort of started to shiver and then she said that I fell into like a deep sleep. And then I just remember waking up in the hospital. So then they discharged me that same night. The following days I was so tired I just couldn't get out of bed. Now during this time I was very stressed and depressed as I was being bullied and in the process of moving schools. So anyway when we got back home my Mom took me to a neurologist who sent me for an MRI and a short 20 minute EEG and he then diagnosed me with Temporal Lobe Epilepsy and put me on Epitec. Since I've been on it I have felt terrible and so tired all the time and whenever we mention it to my neurologist he is always very quick to say that It's not the medication. I have been on the medication for just over 2 years now, I'm on 300mg a day and haven't had a seizure since. Then the whole of last week I was feeling worse than usual, I was dizzy, extremely tired and couldn't get my words out properly, so on Friday my mom phoned my neurologist but he couldn't see me because he was busy, so my mom took me to a normal doctor and she did a thorough check-up, and sent me for blood tests and it turns out I have very bad anemia. She's put me on medication and I'm already feeling way better. Also one more thing to note, there have been a few times in the past where I have forgotten to take my epilepsy medication and I have actually felt better on those days than when I take it.
So anyway my question is do you think I really have epilepsy or could my 2 incidents be caused from the very bad anemia?
Thank you to whoever read all this, Any help will be very much appreciated :)
Comments
Hi tayla_lexia, Thank you so
Submitted by Anonymous on Tue, 2019-10-08 - 10:01
Hi tayla_lexia, Thank you so much for sharing your story. We understand this must be very confusing and frustrating to experience, especially if you feel your doctors are not listening to you. Like Gianna mentioned in her comment, epilepsy and seizures can affect everyone differently. It’s important that you continue to follow-up with your healthcare team to express your concerns any changes in seizure types, frequency, moods, behaviors, sides effects & symptoms, to determine what individual treatment plan is best for you. If you feel you can’t talk openly with your healthcare team, or you feel that you aren’t working towards the same goals, it may be time to get a second opinion. For information regarding second opinions, or assistance finding a specialist please visit:https://www.epilepsy.com/learn/diagnosis/you-and-your-healthcare-team/second-opinions https://www.epilepsy.com/living-epilepsy/find-epilepsy-specialist You may want to consider keeping a seizure diary. My Seizure Diary: https://www.epilepsy.com/living-epilepsy/epilepsy-foundation-my-seizure-diaryis a great tool and may be helpful in identifying & tracking seizures, other symptoms, managing medication, other therapies, recognizing triggers and health events that may affect seizures and wellness, and communicating with your doctors.It’s important to remember that you are not alone. However, we know that being diagnosed with epilepsy can be upsetting and make you feel isolated. One of the most important things to help you live with epilepsy is to find a support network. Learn more about your community support resources here: https://www.epilepsy.com/learn/challenges-epilepsy/social-concernsAdditionally, you may also contact our Epilepsy and Seizures 24/7 Helpline:1-800-332-1000 contactus@efa.org , where a trained information specialist can connect you to resources, provide referrals and additional support. epilepsy.com/helpline
I am a RN and also have
Submitted by mlm on Wed, 2019-10-09 - 01:59
I am a RN and also have epilepsy and have also suffered from anemia for 2 years that was due to uterine fibroids. Was your anemia? Mine, for example, was so severe that I was losing my hair. Even at that level, it never triggered a seizure. Studies correlating the two are conflicted. Anemia definitely can cause fatigue, and light headedness, which would explain your symptoms. As we know, lack of sleep can also trigger seizures. On another note, most EEGs are 1 hr in duration and measure brain activity while awake and during sleep. Another thing to consider is that your body has changed a lot since you were 12 years old (hormones, menstrual periods, weight, metabolism, etc). My advice is to get a second opinion and also repeat your EEG. Best wishes!
Hi tayla_lexia,I am a
Submitted by Patriotrehab on Mon, 2019-10-07 - 23:15
Hi tayla_lexia,I am a licensed clinical social worker and certified rehabilitation counselor as well as a person with epilepsy. It sounds like you have risk factors for epilepsy (head trauma) and non-epileptic events (anemia or psychogenic - extreme stress, bullied, depression) and there is always a possibility of misdiagnosis, but nobody here can tell you that for sure because epilepsy affects people differently and we are not physicians with access to your records. Someone from the Epilepsy Foundation may reply to you this week with some information about getting a second opinion and communicating with your healthcare team. I do think it’s important that you express your concerns with your mom if you haven’t already so that the two of you can either bring your concerns to your current neurologist or seek a second opinion.