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Krista

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Hi everyone,

It's been several months since I made my first and only post so I thought I should give an update. When I last posted I was in the process of all the tests and waiting to see the neurologist. Well, as usual the tests came back negative so the neurologist referred me to an epileptologist. I got in to see him the end of November and finally got a diagnosis, temporal lobe epilepsy, simple and complex partial seizues(which is exactly what I knew I had!). YAY! I had a huge smile as he told me I had epilepsy. The thing is, I had already come to terms with the fact that I was having seizures but not getting a diagnosis was the most frustrating thing. I feel like I can move forward now and get on with my life. The epileptologist put me on Tegretol, which I've been on for about 6 weeks now and I don't seem to have any side effects. I haven't had a seizure since the 1st of September so it's hard to say if the meds are helping that or not. I'll just have to wait and see, but I feel great. Anyway, just want to say thanks for this site, I may not be here too often(as I don't like to be on the computer too much) but it's nice to have the support when I need it.
 
Thanks for sharing the good news!

It's great to hear that sometimes tests, doctors, and meds do what they are supposed to do:woot:

Hope things continue to go well:)
 
That's really

cool, Krista. Thanks for keeping us updated. :) It's always a great thing to hear that one of us is doing well. :)
 
What tests did your Epileptologist run to confirm your diagnosis of temporal lobe epilepsy, I was diagnosed by my psychiatrist and the tests the neurologist ran came out negative, so I'm to see an epileptologist as well, just wondering how your experience was. Thanks.
 
Morganomics, all my tests that the neurologist ran came up negative. When I saw the epileptologist he diagnosed me just by my own records of my seizures and he talked with my husband who described what he saw while I had a seizure. Some seizures are deep enough in the brain that the tests won't pick them up. Sometimes epilepsy is just diagnosed by your description of your spells! I have to say that my experience with the epileptologist was great. It was the first time I felt I was really understood. I didn't feel like the neurologist got it at all, he didn't think I had epilepsy simply because my tests were negative. I am thankful that here in Calgary we have a really great epilepsy department. Some people aren't so lucky and they just have to deal with their neurologist. I hope you have as good of an experience as I did with my epileptologist. Good luck and keep me posted!
 
I am so happy for you - a diagnosis at last! And a doctor who does all the tests that he should. A gem!

I'm hoping the drugs will get things under control for you. Will you let us know how you are doing?
 
Thanks Endless! I am actually doing great. I've been on meds (tegretol), since November, however I've been seizure free since September 4th. I will be allowed to drive in about 6 weeks.......can't wait. My seizures aren't typical in the fact that I've gone years in between episodes. Years ago I just didn't know what my simple partials were, just thought they were a strange feeling. I would get them for several weeks then they would stop for a few years and they would start up again.However, they progressed into complex partials and last year I had seizures off and on for over 6 months straight. So I am glad to be on medication and here's to hoping I don't ever have another seizure or at least that don't progress into other seizures.

I have one question for anyone who can answer. I've come across the term "breakthrough seizures" quite a bit on this site. I think I know what they are but would appreciate if anyone can tell me just to clarify. Thanks!
 
From wikipedia:

A breakthrough seizure is an epileptic seizure that occurs, despite the use of anticonvulsants that have otherwise successfully prevented seizures in the patient. Breakthrough seizures may be more dangerous than non-breakthrough seizures because they may be less expected by the patient, who already considered him/herself free from seizures and therefore, not take any precautions. Epileptics with a higher intensity of seizures are more likely to suffer from a breakthrough seizure. Often when a breakthrough seizure occurs in a person whose seizures have always been well-controlled, there is a new underlying cause to the seizure.
Click to expand...

More at the link:
http://en.wikipedia.org/wiki/Breakthrough_seizure
 
I couldn't agree with you more about not knowing what you have. It's sooooo frustrating when you have to ask so many questions, only to hear the Dr. say, "yea that could be, but I don't know". I feel like it's going to be forever before I know what's wrong with me, but I'm encouraged after reading your post. I'm going to go see a neurologist now.
 
PattyMelt, hang in there! Keep doing your own research, nobody knows what you're going through as well as you do. With help from reading posts on this site about other peoples experiences and my own internet research I pretty much knew what I had, I just needed it to be confirmed from a doctor. Keep at it and keep telling them what you think it is because not all neurologists specialize in epilepsy and don't totally understand it. My first neurologist was convinced I didn't have epilepsy but he still referred me to an epileptologist anyway. I am so glad he did, needless to say! I hope you get some answers soon, it is such a relief when you do.
 
Thank you Krista! I'm trying to find a Neurologist that will work with me w/o insurance... It's hard to find, but I know some places will bill you. That's the other sucky thing about this is it's EXPENSIVE to see a Dr. w/o insurance; However I'm not going to stop looking for answers until I find them. One thing I realized today was I was prescribed Kepra 1000MG a day for anxiety which the ER Dr. said I should take instead of Welbutrin. Well I ran out and went to get a refill and it was over 200 bucks at walgreens. So I didn't have the money and went back on the Welbutrin 4 days ago. I'm wondering if that's why I'm having so many seizures. They seem to be coming more and more often, and my brain feels so empty :(
 
Hey,

Sounds like you are having better luck in calgary than I am in Edmonton. Maybe a road trip is in order :D.

I'm just waiting for the results of my EEG, but my epilepsy doctor doesn't believe it's epilepsy. I guess I'm hoping for a positive result, but I don't really know what that will do. I guess the logical side of me knows that it doesn't change the treatment at all anyways. They just have to keep trying new drugs till something works. I think emotionally a positive result would have a good impact on my life.

I'm just curious about what this diagnosis meant to you? Did it help make things make a bit more sense, or help with the treatment?
 
PattyMelt,
I feel so fortunate to be in Canada concerning health care. Our system is far from perfect but all visits to Dr.'s and specialists are covered by the government, though we do need a private health care plan to cover prescriptions. As for as going off Keppra, I think that could be why you're having more seizures. Although I am new to this and don't know much about AED's, I'm sure there are lots of people on here that can provide more info than I can. I hope you can find a doctor that can help you and maybe a medication that will work for you that you can afford. Good luck!

And Reuben12,
Yes, having a diagnosis meant so much to me. I was so happy leaving the epileptologist that I think my husband thought I went crazy! Knowing what you're dealing with makes it much easier, for me anyway. As far as my treatment, I hadn't been put on any medication until I got my diagnosis so I felt relieved to start treatment. I didn't just have to sit around and wait for my next seizure to occur, I could actually do something to try to prevent it. You are already on medication, but I still think knowing exactly what you're dealing with will make it easier to cope! Here's to hoping for a diagnosis!
 
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