Updates and Some Clarity

[Shelley3297]

I haven't been here in awhile, but wanted to share some of my story, and maybe some of it helps others, maybe not.
Back in early Jan/Feb of this year, I was truly confused about what i was experiencing until i had my 2nd opinion from another neurologist. I have only been diagnosed with epilepsy since Nov of 2021. Just a note here, if you are newly diagnosed, or even not so recent, I believe it is A MUST to get a 2nd opinion, and make sure that you see a neurologist that has experience with seizure disorders, and a cardiologist to get the BEST doctors looking at your history and testing. My 2nd opinion neurologist ordered another ambulatory EEG, and made me see a cardiologist.....who now is having me tested for poTS, which I am 99% sure that i have. I am up to 2000mg/day of keppra, but may be changing that as I have recently had several breakthrough seizures (they seem like myoclonic seizures, different than what i was having originally). I have tried adding lamotrogine, unsuccessfully, and those 2 anti-seizure meds are the only ones so far for me.
My 2nd opinion is now my permanent neurologist, and also was the first to actually listen to me about the types of headaches i was having. We believe these are neuropathic pain headaches (not migraines) which he is treating with a small dose of amytriptoline. Neuropathic pain doesn't usually respond to ibuprofen, or other n-saids of any kind. I haven't been on it long enough to know yet if it is working, but i have high hopes.

For those of you here with other chronic illnesses, do you find it difficult at times, to differentiate between the symptoms of epilepsy or seizure activity, and the symptoms from your other illnesses?

 

[Nakamova]

As far as I know I don't have anything else going on, but I know some members have had co-occurring immune disorders (like Crohn's disease) and others have diabetes -- which can either mimic seizure symptoms or make them worse, and vice versa... It can be a tricky road to a diagnosis, especially if you've got more than one thing going on. Sounds like you have a good team now, which is great.

 

[Sabbo]

I don't have anything except epilepsy going on, either. I've had the simple partials since I was a little kid--I'd complain of "weird feelings" in my head that nobody could diagnose. It wasn't until one occurred during an EEG after some grand-mahls that I had in 1987 (none since) that they were finally diagnosed. Approximately 23 years ago, I began having complex partials as well. Those are a BIG problem for me. They occur without any aura, and unless another person witnesses the seizure, or I injure myself or do something to my surroundings, I wouldn't even know if one has occurred. That's another reason I keep a television on at all times. If I suddenly notice that a huge time lapse/completely different show on, it means I probably had a seizure.
A nurse from our insurance company calls me once a month--sort of a well-being call, and reports things to my neurologist's office. She asks how many seizures I've had & if any changes have been made to my dosages. They helped get the EEG I had last month set up. This last time, I was talking to her about how a VNS is kind of useless for me, since my complex partials occur w/o aura.

 

[Shelley3297]

I had seizures every day this last week, plus my poTS was in a major flareup, so that sucked! The only good thing about this is that i did have several seizures while wearing the amb EEG, so hopefully they can get a better idea of seizure focus, or type for me. I will say also that i am very thankful (for the moment) that i have pretty specific auras and seem to know when stuff is coming on. At least with my current activity. But the fact that they suddenly came on every day (after being seizure free for a month and a half), and are a little different than what i was having originally, makes me afraid that they are worsening and that maybe they are stemming from a structural abnormality of some kind that is getting worse.
In any case, i have to wait until early next week for my doc to get the results from the EEG, and see how they want to proceed.