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Thu, 03/21/2019 - 13:58
I had my first grand mal seizure out of nowhere when I was 15, I’d never had any previous medical issues. The doctor I was under was rubbish and kept saying it was hormonal I’d have seizures all the time and miss school and didn’t get very good GCSEs due to this. When I was 18 I was finally transferred to a different neurologist was told it was epilepsy and was put on keppra. I’ve hadt terrible times with epilepsy lost jobs, not been able to do the things normal people do but I’ve always tried to be positive. My seizures got a bit better, last year I had two bad seizures and was intubated and was in icu on both I thought that was the worst it would get. After this I got given bucculam and went on the highest of keppra and went 10 months free I honestly thought it was cured in January my dad suffered a shock heart attack it was a big shock but he recovered fast and is fine. Since then I have had a fit nearly twice a week, I’ve still tried to be positive. For two weeks now I’ve had one nearly every day sometimes twice a day I’ve bashed my face in dislocated my shoulder, I honestly don’t know what to do anymore i feel the lowest I’ve ever been. I have no life and epilepsy’s slowly year by year took the old me away, I don’t want sympathy as I know people are worse off. I just need any ideas to help stop me feeling like this and ideas that help people’s fits. Some of this may not make sense as I’m still recovering from a grand mal yesterday so really tired. Thanks

Comments

Hi Molly:So I always tell

Submitted by Jazz101 on Fri, 2019-03-22 - 19:13
Hi Molly:So I always tell anyone with Epilepsy or any other challenge, medical or non-medical, to not remain too silent about it. It really helps when you start to get that feeling out in words. And from reading your post, well, I can definitely see how this is taking a toll on you. However, what does help--not solve--is making sure you are not overwhelming yourself with a host of guessing. After all, guessing can really take us places. And in cases where the situation is already a challenge, guessing is one of the things we should try to balance. That is where talking comes in. Epilepsy is often a challenge because many who don't have this condition at times will find it difficult to understand how it can affect anyone in certain designated ways. One of the things you said stood out, and that is, to quote you; "epilepsy's slowly year by year took the old me away." I won't question that feeling because at the end of the day until we step in someone's shoes we can never quite challenge how they feel. I have had Epilepsy from the time I was in my single digit years. As a result I had ample time to adjust. Couple that with the fact that my family includes medical individuals, and the walk for me, while a challenge in its own areas, wasn't an overwhelming something. While in college I saw my grades take a dive. I can remember once stepping into class and had totally forgotten we had an exam scheduled that day. So my share did, to some extent, edit certain areas for me. What it didn't edit was how I felt about myself. And that is because I always saw Epilepsy, while annoying and something that really affected my academic performance, as a neurological condition--no more; no less. As a result I never allowed my academic performance to define me.Is it something I wish I didn't have? Sure. But for me the goal was to figure out; "What are my best options in terms of dealing with this neurological condition?" I always sought neurologists who understood this condition because at the end of the day not all neurologists quite specializes in Epilepsy. Some are more specialists in Strokes and Parkinson's. So your first goal should be to find a neurologist who specializes in Epilepsy.From some of the terms I see in your post, I am guessing you might not necessarily reside in the United States. The terms are more British, hence maybe the UK or Canada or some other country that follows the Oxford spellings. My advice to you is to do some research on neurologists who specialize in Epilepsy. If by chance you currently reside in the United States, a great link to finding a neurologist who is good in this area is a link US News and World Report has. They do a great job of rating hospitals. In your case the area would be neurology and neurosurgery. That is how they term the area. Here is the link,https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgeryYou are not alone in this fight Molly. Yes, the way you feel at this time is totally understandable. After all, a doctor who is doesn't know much about this condition will really frustrate you. Couple that with your other experiences, and the way you currently feel, yes, it can't be fun.We are here Molly. It will be a challenge on your side. But whatever guidance we can give you relative to how we dealt and continue to deal with this diagnosis will may help you balance how you see yourself. Like I said, my grades in college really aren't bragging rights. But what is a bragging right is knowing that the brain has to be contextualized. Certain things don't define you. My grades surely don't. They are just a symptom of what having memory problem can do. But a challenge with memory doesn't mean the information isn't there. Put it this way, I watched my grades dive because of Epilepsy. And post surgery I watched other functions also see some short term changes. But my approach to medical challenges is to first not allow it to define me. My next step is to then find medical specialists who can make a difference in whatever the challenge might be. Take it a step at a time Molly, the way they told me recovery post neurosurgery was going to be a step-by-step process. If you are in the United States, take a look at that link and see if you can find a neurologist who specializes in Epilepsy where you reside. Best Regards

Stress takes it effects. I've

Submitted by Misjoey101 on Sun, 2019-03-24 - 23:34
Stress takes it effects. I've lost two jobs this year due to my epilepsy and now I sit unemployed trying to find another one. Hopefully, someone supportive and encouraging is there. Do you live in CA?

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