my Doctor is stumped

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.

Please have a look around and if you like what you see, please consider registering an account and joining the discussions. When you register an account and log in, you may enjoy additional benefits including no ads, access to members only (ie. private) forum nodes and more. Registering an account is free - you have nothing to lose!

Messages
275
Reaction score
0
Points
0
Hello everyone!

I'm new to here, my neuro sent me to an epi and she said I prob, have PNES, but after talking to my neuroand explaining about my seizuresthat I get after making love to my wife he's now confused my epi didn't want want to address those seizures, or talk about the seizure I had in her officeshe made up her mind and that was that, I dont fit into the PNES definiton they haven't changed over time, they've been the same, my stress level is the lowest its been in years regardless of my current situation, and then she tried to tell me that 4 sodas over a 7am to 11pm day is to much when I used to drink 5x that much and never had as many seizures as I do now, and never had night seizures with urination like I do now.
My neuro is stumped on why the epi wouldnt listen to me, after my night seizures I'm tired, sore and have a migraine that last most of the dayand I'm tired 75-90& of the day. He's talking about adding Keppra to my topamax after he reads my seizure journal that I gave the epi doc and I like my neuro but I didnt care for my epi doc and my neuro said he'll look over all the info and make his own diagnosis and get back to me soon. Anyone here with a simialar issue please chime back please, and let me know what you went through!
Thanks!
Mike
 
Hi Mike, welcome to CWE!

I moved your intro post to The Foyer, so more folks can see it.

It sounds like your neurologist is a gem, and your epileptologist needs to be replaced. Have you had an EEG and/or MRI done? A sleep study might be a good idea too, given your nocturnal seizures.

While you're waiting for your neuro to get back to you, you might want to start a journal of your seizure activity -- it can potentially help to identify any triggers that may be playing a role. It's also helpful if you track other things like diet, sleep, and activities. The 4 sodas, for instance, might not seem like that much, but if that's your daily regimen, the caffeine, aspartame (if they are diet sodas), and phosphorus could be having a cumulative negative effect. Even if you've consumed 5x more in the past, that doesn't rule out the possibility that your metabolism has changed, and your seizure threshold has lowered in response.

I hope you and your neuro can come up with a treatment plan that gets the seizures under control. The more you have, the more likely your brain is to "get in the habit" of seizing.

Best,
Nakamova
 
I keep a daily journal, and now and switching to the caff free, and more water and juice, and with my disability my epi wanted me to walk 45-60min 3x daily which is hard to do I do as much as possible with shopping and chasing kids! lol, but after my TIA in june I walk with a cane and 10-20 min is sometimes a chore, Ive had MRI's CT's 1 EEG, 1 AEEG all normal, my neuro is now talking about doing a video eeg, and I told him if we do that I'm going to have to make sure that my wife and I are "together" before the test so that way I have a seizure for the video EEG since that is a trigger for my night siezures and my epi blew that off and wouldnt touch it with a 20 foot pole. Thanks again Nakamova!

Mike!
 
Wow, that's a shit load of walking, especially using a cane!!

I hope you get answers soon.
 
try chasing 6 kids 8 and under with it at 31 thats the fun part my neuro understand she (my epi) didnt she looked at me my AEEG goes oh everything looks clear your MRI clear you dont have seizures or E but you cant drive I think you have PNES but you should see a shrink do you see one? I was having my SPS and she was ignoring me and then had a bad one while she was dictating looked down while catching my breath she asks " michael whats wrong?" I tell her she goes well like I said they're nothing just breath, I told her well next time while I'm driving since they are nothing I'll hit a tree go to the ER and hopefully someone there will care like my Neuro who I'm calling tomorrow! and she wasn't to happy but Like Nakamova said my Neuro is a great one! so I'm calling him in the Am with somw things I found on here from reading on here from some really great threads!
thanks so far everyone!
Mike!
 
Back
Top Bottom