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Welcome to the Coping With Epilepsy Forums

Welcome to the Coping With Epilepsy forums - a peer support community for folks dealing (directly or indirectly) with seizure disorders. You can visit the forum page to see the list of forum nodes (categories/rooms) for topics.

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Rag

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I thought it would be polite to introduce myself a little before I started posting elsewhere. :)

I'm 32 and have been getting a variety of strange symptoms since my late teens, the most serious of which only occur when I'm sleeping. It took me a long time *and quite a lot of personal research, as I didn't find the doctors particularly helpful* to come round to the idea that I very likely had a form of epilepsy with a somewhat uncommon, hence perhaps difficult to diagnose, combination of symptoms.

I still don't have a formal medical diagnosis, and am unsure whether I want to push for one at the moment due to the negative aspects of having a diagnosis, the fact that it doesn't seem to be getting worse and is currently managable, and also because I hate getting any kind of medical treatment - I'm the kind of person who won't even take a painkiller for toothache!

However, the condition does affect my life, sometimes to a significant extent, and rarely leaves me alone for long. I've also had a lot of weird and often disturbing experiences associated with the condition which are rather hard to explain people who haven't experienced something similar (and I'm not altogether sure I want to even attempt to discuss with them!). I suppose I was looking to share experiences with people who have had similar issues (who are hard to find in everyday life!) and perhaps clarify my own thinking in the process.

For the record, the symptoms I get seem to be consistent with epilepsy which mainly affects the temporal lobes (but which may generalise elsewhere at times) and which only occurs at night (or when very close to sleep). I'm not sure I want to say more right now, as there is probably somewhere in the forum where it would be more appropriate to discuss symptoms in detail, I'm just not sure where it is yet. ;)
 
Hi Rag, welcome to CWE!

You'll find plenty of folks here who are familiar with the symptoms of TLE, and can commiserate or confirm what you're experiencing. One reason to consider treatment of some sort is if the symptoms start to escalate in frequency, duration, or kind. Keeping a seizure/symptom journal can be a great way to track any changes in your patterns. A journal can help as well with identifying potential triggers (things like diet or fatigue).

Feel free to explore the different forums here at CWE, and post and chat.

Best,
Nakamova
 
Hi Rag,
I hope that you find this great forum as good as i have,welcome!!!!
 
Hi and welcome-was diagnosed with left temporal lobe epilepsy over 2 years ago and Im still full of questions.basically it helps that others have the same symptoms because no matter how good your doc they can skew things and this forum has brought a lot of peace of mind.
 
Hi Rag :hello: Welcome to our party! I have nocturnal seizures as well and I know how awful you can feel the next day. It is so strange how they don't wake me up (just the hubby), but the look out for the next couple of days. After that I am good until the next one. So far, March has been seizure free :woot: You will find kind and considerate people here who want only to help you. Enjoy your stay :)
 
Welcome, Rag!

I have temporal lobe epilepsy. And boy, are some of the seizures weird. It takes a long time to finally understand them. The people in here helped me a lot.

I'm really glad that you found us, and that you are here!
 
Thanks for the welcomes guys. :) As you may have noticed I've made some loooooong posts elsewhere since joining - it only just occured to me to get back to this thread though!
 
Welcome to CWE.

The seizure journal mentioned above is a great suggestion. It will give you a discussion point with your doctor and make it hard for them to ignore symptoms.

Many people here have 'unique' symptoms which they find out here are not unusual. The MDs just don't understand them.

:cheers: Have a cup of coffee on me.
 
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