Epilepsy and this weird sensation

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notime

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Hi,

I was diagnosed with primary generalized seizures over a decade ago. I started having falls, after getting up, but I only mentioned it lately to my doctor like 4 years ago due to not wanting to increase medicine.

I finally got into more details with him. He said it was juvenile myoclonic seizures. He didn't believe it was atonic seizures. Moving on, I need to explain this storm I get.

When I wake up or real tired. I get these sensations. I know when it kicks in, it has like an electrical storm feeling, I can be reading then it clears my memory for that period. it impacts my thinking. I don't know how to explain it. I thought it could be partial seizures, but he doesn't seem to think I could have partial seizures.

What does this sound like? I tried asking AI, but it doesn't seem to know.
 
Hi notime,

This sounds like you may be having the myoclonic seizures. I've had them in the past until I was put on vimpat and
that stopped them. What you need to do is speak with your neuro and get a sleep study and e.e.g. set up by doing this
they will be able to see your sleep pattern and if you are having seizures in your sleep like I was. Then when I got up
I was exhausted even though I got a goods night sleep. The Dr. also found out I have sleep apnea during the study
and when I woke up in the morning I would sometimes end up having my regular absence seizures. Take note if these
seizures only happen when you go to bed and when you wake up. If they do they are the myoclonic seizures.
I wish you only the best and May God Bless You,

Sue
 
Hello, & welcome to CWE. It is also possible that you are experiencing simple partial seizures. They can vary greatly from person to person.
I also kept complaining "weird feelings" that I could actually feel start come on--since I was 5. They turned out to be simple partial seizures and were finally diagnosed during an EEG--AFTER I had 3 or 4 tonic-clonic seizures when I was 14 (none of those since then).
When the simple partial seizures occur, I can start to feel something odd in/from back of my head, on the right side, which it spreads both upwards and to the front. They're usually over within 5 minutes.
What's become scary for me, though, is that I began having complex partial seizures about 26 years ago. Those occur with no aura/warning & have been VERY dangerous for me. Without a witness, I know nothing about the seizure. I've severely burned myself (2nd/3rd degree) AT LEAST 8 times.
Talk to your neurologist about having some tests done to determine which type of seizures you're experiencing. Then you can take the right AED/dose.
I have taken ALL the AEDs possible for my seizures, & now I'm on 500MG Zonisamide & 250MG Xcopri/day, but STILL average 1-3 breakthrough complex partials per month.
 
They were really rude (I'd use profanity, but probably not allowed). My neurologist, said, it is extremely rare to have two types of epilepsy and how he delivered that message, was like "I know everything and despite your symptoms, I know more about it despite you're the one having it"

I believe it is potentially partial seizures. He went based on an EEG like 10+ years ago, that was 30 minutes. I could have both. Epilepsy itself is rare 1% of people get it. He ordered an EEG.

His nurse, gave me papers, and said "it's not down he ordered an EEG" and she was completely rude about it too. as if he didn't do it. She went to ask him. Of course, she finally realized she was wrong. On top of this, the EEG technician called, I didn't answer, as I didn't know about scheduling.

My mother has to take me, and I can't drive. I didn't answer them, because I wasn't sure when she could take me. They called secondary number which is my father. He setup some random appointment which was last Monday. My mother couldn't do it, so, I called my mother and she scheduled to take off this Monday. I called to reschedule it and correct it, they were "I ALREADY scheduled you"

I don't know what is wrong with these people. They didn't even give me any instructions for the EEG like to skip the night. I'll skip sleeping tomorrow night. I will gobased on my past EEG.

When I wake up. I get this odd sensation in my brain. I can read an article, then it interrupts it then it has this weird feeling then it clears my memory for a few seconds. I'm aware of it, then sometime later, it clears my memory again. I was found to walk into the wall in the dining room, and fell to the floor. It seems to only happen within an hour of waking and within an hour or two of being tired.

I don't know what else to tell him. They aren't taking me seriously.
 
I REALLY wonder what's up with this neuro that you're seeing. Do you have any way of changing the neurologist you see, or are you simply "assigned one/to one" by your insurance? I have also had some bad experiences with neurologists, but nothing like what you describe. For one thing, AROUND 3% of the population has epilepsy. Also, the same person CAN & MAY have different types of seizures! For example, I've had simple partial seizures (aka Petit Mals) since childhood. The ONLY time I had tonic clonics (aka Grand Mals) was at the age of 14. Then, I was suddenly started having complex partial seizures about 26 years ago. Those have been REALLY troublesome since they occur without any aura, & I've injured myself in many of them. In fact, thanks to them, I feel my college degrees became useless--I can't work.

I have tried EVERY AED out there for the types of seizures I have. I normally use the ones I wasn't allergic to until my neuro wants to switch it for a better one, or finances require it. That's how I started using Zonisamide--our insurance changed when I was on Vimpat & Topamax (still getting breakthroughs on 800MG meds/day!). The new company wanted US to pay for Vimpat ($1600/month!!). EVEN NOW, although I take 500MG Zonisamide and 250MG Xcopri daily, I still get breakthrough seizures.
 
He has "additional training" in epilepsy, but it's complex, with even additional training, he's not an epileptologist just like an extra year. I've seen him since the beginning, so, I don't think I can change, easily.

He's going based on an EEG, from 10-11 years ago that was for 30 minutes. I started having more myclonic seizures later on. I'm on 600mg of lamictal and 50mg of topamax. Vimpat isn't generic? I'm looking it seems to be.

I had it since 2012. I am now 33.
 
Hi notime,
Check out GoodRX.com and you can get a discount on Vimpat if you want to. I know the drug isn't cheap and if you
do start taking it each time you pick it up you will have to show them your ID because it's a controlled substance.
I have to call my neurologist every 3 months to get a refill. I wish you the best of luck and May God Bless You!

Sue
 
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