No Diagnosis

[AnneS]

Hi everyone, my name is Anne and i've been suffering from what i'll call Auras. No doctor has yet to find out what's causing them. I have been on Gabepentin for over a year and it seems to control them for the most part. Until Monday night/and tuesday till 1pm i had aprrox 15 "spells" while sleeping, and it would wake me up. Haven't had one since yesterday but i had called Dr and got "OK" to increase my dosage(currently 300mg 2x daily) think i may go to 3x daily. Anybody else have the same problem? No test has revealed anything and i'm scared and frustrated!!

[Nakamova]

Hi AnneS, welcome to CWE!

Auras can be considered "Simple Partial Seizures", especially if they aren't followed by a migraine headache. Often simple partials originate too deep in the brain to show up on EEG, so it's not unusual to make the diagnosis without test confirmation. In fact, one way a diagnosis is confirmed in the absence of a positive EEG is for the symptoms to respond to medication -- and yours do.

I understand your frustration -- unfortunately it can take a while to get the right dosage or med to control the seizures. And sometimes seizure disorders change or our metabolisms change, and the treatment has to be adjusted accordingly.

As for the "cause": The majority of seizure disorders are idiopathic -- that is, there is no known primary cause. There CAN be secondary triggers though, and if you keep a seizure diary you may be able to identify them. The #1 trigger is fatigue, but there are many, many kinds -- low blood sugar, dehydration, nutritional imbalances or sensitivities, infections, hormones, flashing/fluorescent lights... In general, it's good to look out for potential physical, physiological, and emotional stressors, and avoid them where possible.

Best,
Nakamova

[Literophile]

What are your auras like? Writing it down and bringing it to your next appointment may help your doctor get a firmer diagnosis. It did for me.

I'm on Gabapentin right now and it really helps, but I hate it. I'm apathetic, and when I'm not, I'm depressed. It helps my neuropathy and my seizures, though. Been almost three months since my last one.

[Endless]

Anne,

Welcome to the forum!

600mg of gabapentin is on the low side to control seizures, so it's no surprise that you are having them again. An increase may take care of it. If it doesn't your doc may switch your meds.

Seizures wake me up at night, too. At night they are usually fear seizures - I'm like a deer in headlights. My meds are finally at the right level - Lamictal at 300mg. I only have a seizure once every few weeks now.

I'm also on Gabapentin also. 600mg 1x daily. It's mostly for nerve pain in my hands and feet, but I noticed that it's helping my seizures a little bit, too.

What are your auras like? Nak is right - "auras" are considered simple partial seizures themselves. Fifteen in one night is a LOT. Maybe you would want to consider going in for an appointment with your neurologist? In person the conversation is much more helpful.

Hang in there.

[davidmc]

I had the same problem of no diagnosis with simple partial seizures. However, I was denied any medication because the EEG tests did not show up anything.
I have recently been diagnosed with Non Epileptic Attack Disorder, which I don't believe I have. I am on Topamax, but was only allowed that because of my headaches, and not because of my seizures.

[Ruth]

Hi Ames, welcome to the forum. Bernard made this forum out of love for his wife Stacy. You will find that love everywhere in here.

Seizures only show up on an EEG if you are having a seizure during the EEG. I am on 200 mg of Gabepentin, Neurontin. It is also for headaches. I have been on it for years and it has helped my seizures tremdously.

[AnneS]

WOW.....THANK YOU ALL so very much!! AS far as my neurologist, I REALLY need to go to a different one, lol. My regular doctor is the one who actually prescribed me Gabepentin. He is increasing my dosage and if that doesn't help then it's back to a neurologist. The auras have never happened like that before. Usually i'd only have one maybe once every 3-6 months.

[Ruth]

Anne, our brains are very complex. We have 2 major neurologist transmitters in our brain. One is the GABA neurologist transmitter and I have forgotten the name of the other. I will have to look it up.

I went for a long time without seizures. Now, they are starting to act up again. It affects my memory. Do you know that a lot of people with epilepsy are very creative: writng, poetry painting etc.

[valeriedl]

I would defently see a neurologist, alot of times regular drs don't know whats going on.

My neurologist really isn't sure what started my seizures. They think that some sort of virus got into my spinal fluid and went up to my brain and that caused the seizures.

In my opionion I'd becareful about increasing your meds on your own. I'd suggest asking your dr about it first.

As Literophile said, keep a seizure diary. Make sure you write down what the seizures were like, how long they lasted and if you did anything out of the oridnary. That way if the dr asks you about them you will know the details.

[AnneS]

Got my meds increased today to 600mg 2x daily. I am definitely going to start a journal of these episodes. They are so very hard to explain but I need to find someone that understands what i'm going through when they happen. I believe 100% that i've come to the right place. When they first started it would only happen within the first hour after i'd gotten up in the morning. I would just feel weird and sometimes the left side of my body gets hot. My mind would flash to something TOTALLY random and off-the-wall, like the image of a painting or a board game. The strange feeling would last up to 10 minutes, and then i'd be extremely tired and often couldn't tell you what my mind flashed to. Now I never know when they are gonna happen but they don't last but up to 5 minutes. Monday night into Tuesday was the worst ever and like you said Endless, the ones that woke me up i did feel kinda like a deer in headlights. I do know when one is getting ready to hit me

[Ruth]

Hi Anne, I really hope that the increase in medicine will work for you.

I know keeping a diary of your seizures will help the doctor.

Take care,

[AnneS]

I went to Epilepsy.com last night and looked at Simple Partial Seizures and there were 4 "categories" and right now the only 2 i remember are the 2 that apply to me almost to a T. Sensory Seizures and Psychic Seizures, so once again i want to thank ALL of you for the info. Took my 1st 600mg Gabapentin last night and it made me dizzy but the pharmacist said that would stop after a few days. Hope he's right

[Literophile]

It will. About two or three days. I take 1200 mg every night and have done for nigh on four months. It made me dizzy too. XP

[KathyMarkovich]

sounds like mine!! I have complex partial focal epilepy. Mine is from a head injury i received 4 years ago. I have over 30 in a day, they come every 19-22 days, and after they are done i am sick in bed for 2-3 more days. It took me 9..count them 9!! doctors to finally diagnose me. I was diagnosed with a brain bleed, a stroke, silent migraines, drop attacks, a brain tumor, a heart condition, and a blood clot. The standard eeg did not reveal anything, so I was sent to U of M for a video eeg, which lasted 1 week. During that time, because the test is so extensive, they discovered that I am always in seizure activity..Im never without it...though the biggies only come every 3 weeks. They said the damage is so deep, they had to really look for it to find it... while out there for this test, I was lucky enough for my seizures to start, and I had over 17 on the monitors...this lead to my diagnosis.
I also get an auro before my seizures...that last about 45 seconds...and they too always start while im asleep.
Insist on the video EEG...if your doctor wont allow this test, then you find another doctor that will! its very important for a proper diagnosis...and trust me, you will get it with the video eeg.!!
hope this helps!!
Kathy

[Ruth]

I take Gabepentin 600 mg three times a day. So I take 1800 a day. It works for me. I have taken it for years. It still works. Another benefit is that it helps to get rid of headaches.