I can't take not knowing anymore!!!

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Mellismom

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I've been tired and having some sort of seizures at night for years now. It's been terrible, scary and I haven't felt rested at all. Doctors say it's epilepsy, then they say it's not, then they say it might be... And if it is not epilepsy then it must be PNES as if those are the only two diagnoses in the world. It feels like this goes on forever and I can't take it anymore. Not knowing what it is, not being treated for it, having troubles finishing school. I've been taking the same classes over and over again, can't work more than a few hours. I usually collapse on the outside but right now I feel like it's inside I'm collapsing because I don't see an end to this.

Sorry this sounds negative, I just needed it out. Having a bad day, I guess... :-(
 
Hug sweetie
Its a long hard and awful road but we get the inthe end many road have dead end sins on and point you ssomewhere to find answers

Have you had second or third options Im about to have third on 5th June :)
If you ever want to talk as we all do just send me a pm Hun Xx
 
Thank you for reply :-)

Well I had a lot of tests done about 8 years ago. All came back clear and it kind of ended there. Maybe a year ago I went to this neurologist who was very confusing. It seemed he couldn't figure out if I had epilepsy or not but I did get the diagnose migraine. He gave up on me and now epilepsy specialists have taken over but I've been reading a little about narcolepsy and think that is more likely in my case. I just wish someone could tell me exactly what it was, why it was there and then help me deal with it. I can see you have complex seizures, that's also what the neurologist thought I had for a while till he suddenly didn't know again because of a clear MRI.
 
Hugs Mellismom. I would defiitely get another opinion if it is affecting your life that much. You can absolutely have seizures even with a clean MRI so i'm not sure why that would have confused him. I hope you get it figured out soon!
 
I didn't understand that either. The specialist I talked to said it might be epilepsy but she isn't sure. I wish someone could say something for sure.
 
One of the many unfortunate things about epilepsy is that some kinds of seizures are just hard to diagnose definitively. The docs don't have all the answers. But one way make a diagnosis is to take anti-seizure meds and see if they help. This kind of "backwards confirmation" isn't ideal, but if there's a chance it may provide relief it's worth considering and discussing with your neurologist.
 
There is also the possibility of a holter EEG, which would let them monitor what is happening while you are sleeping. That is the old fashioned name for them--I don't know what they name them now.
 
Hi hon, I read the Cleveland Clinic's Guide to Epilepsy, and it said, sometimes it is better not to know (that it enables some to move forward). I know there are conditions called parasomnias out there and even movement disorders (the dystonias) that may mimic epilepsy. There are many types of epilepsy, some only occurring during sleep! As jayde-101 said, we have all gones through this before. It's frightening, frustrating, aggravating, and saddening. My doctor said that there can be seizures occurring deep within the brain that will not register on an EEG, which registers only cortical (surface) epileptic activity. (I thought sarcastically to myself, well that's comforting.) :hugs: I stand by you, keep me posted.
 
It must be very frustrating for you. I do agree with Nakamova about trying the anti epileptic medication because that is how I was positively diagnosed. My eeg came in negative but my neurologist had enough foresight to try a mild dose of medication and see how I reacted to it. It definitely made an obvious difference and although I am still trying to get my medication balanced out, I am making positive progress. I just hate the bad days but at least I do get good days and bad days now instead of bad days and worse days. Take care and good luck
 
To piggyback off of Sandie, have you had a Lamictal level drawn recently? It may not be therapeutic--200 mg is kind of a low dose, I think. It actually makes seizures worse in some people, I read that redonkulously long insert for the drug. Plus, it functions chemically similar to Paxil, which actually lowers the seizure threshold. Hope this helps.
 
There seems to be a lot of individual variation. I have seizure control with a Lamictal dose of 175mg/day, but some people need as much as 600mg/day. It can take patience and trial-and-error. Though there's no specific target therapeutic dose for Lamictal, neurologists in the U.S. tend to aim for a 300mg/day dose for epilepsy, while elsewhere in the world the suggested maintenance dose is 100mg to 200mg/day.
 
I could have written what Sandie wrote - exact same situation for me. It was a seizure specialist who was able to get things under much improved control (and as Sandie says, still working on this but improvement is huge). So don't give up until you've seen the proper specialists (if you haven't already), and don't be afraid to ask them "what leads you to that conclusion?". Armed with the knowledge you've gained from the forums and other sites, you can better ask questions and interpret (and question) the answers you get.
 
Chelsea said:
Plus, it functions chemically similar to Paxil, which actually lowers the seizure threshold. Hope this helps.
Click to expand...

And that is why it's also used for mood disorders, too, as are other AED's.

As Nak said, different levels of Lamictal work for different folks. When I was taking it back in the '90's I was up to 300 mgs.
 
Hi, I just wanted to say I sympathize with the needing to know. Once I had a neurologist tell me she had no idea what was wrong because she had never treated non-convulsive seizures. I dont think she'd ever heard of them. Thankfully I already had a psychiatrist/therapist for other stuff and she took the time to figure out it wasn't psychogenic. Then helped me find the other doctors I needed. I told the neurologist well if you dont know...how am I supposed to know?!?

I forgot to say, the psychiatrist figured it out the "backwards" way too, by putting me on Trileptal and seeing that it helped.
 
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I have been thinking about it. The problem about trying meds right now is that I am still breastfeeding my daughter for another 3-4 months. But another problem I just figured out is I might also be pregnant. This will mean it will have to wait until I have given birth and breastfed again for another year, right? I guess that kind of slows things very much down. Also if this happens to be something else than epilepsy, how long will it take to figure out that no anti-epileptic meds works?
 
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Oh and btw it's not because I see this (maybe) pregnancy as a problem - I'll be super excited if it's true :D :D :D
 
Also if this happens to be something else than epilepsy, how long will it take to figure out that no anti-epileptic drug works?
Click to expand...
Unfortunately there's no set answer for this. For some folks with seizures there can be a bit of trial-and-error to find the right med/right dose. This can make it tricky to distinguish between someone who doesn't epilepsy vs. someone who hasn't yet found the right epilepsy med.

I think the first step is probably to find out if you are indeed pregnant, since that will make your other choices clearer for the time being.
 
Congratulations on your pregnancy (if you are). ;).

My daughters neurologist told me that lamictal is safe for pregnancy so when she gets older and decided to have kids then she won't have to change meds. That's if she doesn't grow out of it. Maybe it's safe for breast feeding too. Maybe you won't have to slow things down to get relief from those problematic seizures. Damn things tend to screw with everyone's plans!

Hope this help. :hugs:
 
Nakamova: Yes I will find out as soon as possible.

Kelly: Thank you, I hope I am. :)

Those seizures ruin so much for me.
 
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