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Epilepsy Action
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Looking for some help before seeing neurologist

Hi everyone, I’m new to this group and hoping someone can just help clarify and advise me. I have an appointment with a neurologist coming up next month and I’m not sure what to expect, I have zero experience with neurology and am a little confused why I’m even being sent.

Here’s the story in a nutshell, I’ve suffered from strange “attacks” since I was at least in my teens, I’m now 33. These attacks happen very randomly, and not too often. The last one happened 2 months ago, and before that I had 2 in the course of a week in 2015. I thought these attacks were associated with my stomach conditions (of which I have a few) so I went to my gastro after the latest episode and he said this is likely epilepsy and gave me the referral for neurology.

Here’s what happens in an “attack”: I get this weird feeling in the throat, like someone is squeezing the top of my throat (near my tongue) with two fingers and it’s hard to swallow, I start to salivate with a weird taste that’s hard to describe. Since I was a kid I thought this meant I needed to throw up, so I always go to the toilet spit out the saliva but am unable to throw up. Then I start getting quite weak, I have to sit on the can, my body starts to relieve itself (to put it nicely) and at the same time I start sweating profusely, I’m talking pools of water on the floor. During this time I’m very cold, I get goosebumps and I feel like I’m fighting to stay conscious, it’s a struggle every time but I’ve never passed out. Then at the end of this whole thing I urinate and it’s “over”. I feel super exhausted and I have to lie down but the feeling of death is gone. The entire ordeal can last 10-20 minutes.

Does this sound like epilepsy? Does anyone have an idea what’s going on?

I also have bradycardia (slow heart) and some of these symptoms are similar to a heart attack from what I’ve read, can anyone chime in on that?

And can anyone just give whatever advise you think I could use for my first visit?

I have all sorts of other conditions, but this whole neurology thing is completely new to me. And I always thought epilepsy meant having a violent seizure that knocks you out for a few seconds, so I’m just trying to figure things out and learn now. All and any help is super appreciated.

Thank you! :)

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Hello there. Much of what you have described sound like epileptic symptoms. One for certain is the weird odd taste you get in your mouth. Epilepsy can also result with muscle tension, feel of vomiting, losing balance. With epilepsy may come panic attacks which may be how you are resulting sweating often. Temperature change is another affect. While in an epileptic mode your body is going through so much stress to where it doesn’t know how to react. Seeing a neurologist will give you a better understanding of your diagnostics. Any questions you have in mind will be best to write down. It will be easier and less for you to remember. Another advise I give often is to keep a journal. Note what you experience at what time and in many cases you and your doctor will notice a pattern. Giving you each a much better understanding on what you are going through as to how your body reacts and how often it has to deal with it.

The more information the better the understanding will be. Just hang in there, you will get the answers you need. 😊

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Thanks a lot for your reply! I will definitely write down my experiences and keep a journal.

I have so many more questions but I’m trying to hold myself back from googling and asking too much on this forum before my visit. I’ll definitely have a long list of questions for the neurologist 😅

Thanks again for your help

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Hi there.... one other thought that would really help your neurologist would be if anyone is present whilst you have one of these episodes would be to video it. I’m sorry that it sounds so impersonal but each little element of what you experience tells such a story for the neurologist. My daughter has epilepsy and it took us 6 years to get a diagnosis. I was able to video a few events and these were invaluable for her neurologist. A diary is also so helpful.... even seeing the days experiences on the run up to an event.... overdoing it / alcohol/ foods / stress / sleep patterns it all tells a story. It’s likely the neurologist will request some tests such as EEG readings of the brain waves or maybe an MRI of the brain... all non-invasive but tells so much. Remember to tell them of your heart issues and any medication you take. In the meantime try to relax, eat healthy and get plenty of rest and drink lots of water. Best of luck.

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Great advice! Thanks for taking the time to reply, very much appreciated 😊

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No problem! Let me know how you get on/ next stage.

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