Looking for advice...

[garfield33]

Hi everyone,

About 10 years ago I had my first seizure. I was 17 at the time and I blacked out and was unconscious for about 5 minutes. This episode was thought to be caused by not eating and then ingesting a grape juice causing my blood sugar to sky rocket suddenly.

A month later the same thing happened and it was determined that I had epilepsy. I went on 300 mg of Dilantin and was seizure free since then.

In the summer of last year (2010) I came off of Dilantin since I had been seizure free for so long.

At first I had no issues. However after a few months I began to have a lot of anxiety. This eventually built up to me going on medicine for anxiety (20 mg of Celexa per day).

About 4 months ago I had the first of these "episodes" that seem more than an anxiety attack. The symptoms are as follows:

• They happen suddenly without any cause
• They begin with a very odd feeling or aura
• I have the feeling that I am going to die
• My right eye begins to twitch
• I become very confused and cannot formulate sentences well
• I will pick at my fingernails constantly
• I swallow a lot and very hard
• My pulse and BP go way up
• I am very disoriented and feel like I am in a "dream" state
• Afterwards I am completely exhausted and sleep for 10 or more hours

The last episode like this I had while on vacation. My mother-in-law and wife were both there to witness what happened. After looking on the internet I think these are more than anxiety attacks and seem to fit the bill for a form of seizure.

Anyone else have experiences with these? Do you think I should go back to my Neuro?

Thanks all........

 

[epileric]

Welcome to the Site

It definitely sounds to me like a partial seizure. I have some of the same symptoms.

As much as medications can help control seizures, your seizures can evolve & change.

I would definitely mention it to the neurologist.

 

[Nakamova]

Hi garfield33, welcome to CWE!

I have to agree with Eric, what you describe sounds like seizure symptoms. And they may be caused by the Celexa. Listed under "Celexa Warnings and Precautions" at this link http://depression.emedtv.com/celexa/celexa-warnings-and-precautions.html is the following:

If you have a seizure disorder, there is a possibility that taking Celexa may cause seizures. Talk to your healthcare professional before taking Celexa if you have seizures.

So I'd say it's important to check in with your neurologist and consider a different med for your anxiety.

Best,
Nakamova

 

[Endless]

Hi, and Welcome!

I have a few questions. What is your dream state like? Could you quit picking at your nails, twitching your eyes, or swallowing while it was happening, if you tried? If someone asks you a question, can you reply? How long do you episodes last?

A good neurologist should be able to sort this all out for you. I do think you should go back and see yours ASAP.

I experience some of your symptoms, some not all, and not all of them together.

• I get fear seizures, but there are no physical symptoms associated with it - it's just pure terror. I feel like a deer in headlights.
• I've had the right side of my body twitch, but it isn't together with any other symptoms.
• I've picked at parts of my body, but it's during complex partials when I am not concious.
• I don't get the feeling that I am going to die, but do get a feeling of impending doom as an aura before a seizure.
• I get disoriented, but it's after a complex partial seizure. I've also been in a dream-like state, but it was during a complex partial seizure.

Your symptoms are a bit complicated and could be a LOT of things, like a sleep disorder, seizures, migraine, panic attack, etc. Your neurologist will do more tests and figure it all out for you.

I hope you feel better soon.

 

[garfield33]

My dreamlike state comes on me all of the sudden. If I am around someone I will say "I don't feel good at all". Each time it starts with intense deja vous. Not so much deja vous of the surroundings but of the feeling that I am having. I know exactly what it is and it feels identical each time.

I have memory gaps in this latest episode. I apparently did things that I don't remember. I kept asking my mother-in-law "Am I weird? Am I weird?"

I could not quit picking at my nails or twitching my right eye.

I just don't think these are merely panic attacks. They didn't start until after coming off of my dilantin.

 

[Endless]

Yep, that sure does sound like a complex partial. I'd get in there to see that neuro, fast as you can.

 

[KelVarQ]

I had a lot of the same symtoms and the Deja Vu's (auras) are seizures in and of themselves. I had the deja vus for a year before being diagnosed with seizures. Went to the doctor and he gave me Xanax and said I had anxiety. I threw away the Xanax since it wasn't working and after reading about anxiety I knew that wasn't it, but had no clue what it was until I had my 1st Tonic Clonic about a year after having 100's of Deja Vu's. For me, the Deja Vu's were my warning for perhaps a larger seizure to follow, but eventually the Deja Vu's stopped and I would just go right into Tonic Clonics. As a kid I loved Deja Vu's and now I'm petrified of them onder: Go see your neuro and sorry to hear they're back.

 

[garfield33]

Thanks everyone for the great words of advice and encouragement.

I am visiting a new neuro here soon. I am (in my mind anyway) enteraining the idea of going back on my dilantin. I only took 300 mg and had no side affects that I could pinpoint.

I was completely problem-free the entire time I was on it. Do any of you have objections or reservations for being on a medicine like dilantin long-term?

 

[KelVarQ]

Hi Garfield,

I too was on Dilantin for about 5-6 years and I didn't have side effects either other than being tired and sometimes I would get brain fog (my head felt like it was under water) and quite frankly that med gave me the least side effects but unfortunately all meds just stopped working for me and I had the RTL surgery. However, I can tell you that my neuro will no longer prescribe Dilantin due to Long Term side effects. I don't know what they are, although I'm sure someone here will pop in with more information, but have you tried any of the newer meds which is supposed to be better? The newer meds process through the kidneys while the older ones, such as Dilantin, process through the liver. Many people have success with the newer meds with very little side effects. Perhaps if you haven't tried the newer meds it's something for you and your neuro to consider and if all else fails perhaps Dilantin is the best choice for you.

 

[Nakamova]

Dilantin was the best for me in terms of cost and short-term side effectsbut it was slowly but it can drain calcium out of the bones (even after only a few years) so my neuro gave it the thumbs down. Very long-term it can sometimes lead to cerebellar shrinkage (that's yer brain getting smaller), and peripheral neuropathy (loss of sensation in fingers/toes).

Also when I stopped using it, it had just started to affect my gums slightly.

 

[garfield33]

Well I went to the nero. He was almost certain what I was having were indeed Complex Partials. My General Doc put me back on dilantin since I couldn't get into a neuro for 6 weeks. MY neuro wants to not to take dilantin anymore. Instead he wants me on Keppra. He said it has less negative long-term side affects.

He also ordered an MRI. I had that test done today. The funny thing is that I had an episode in the waiting area just before my MRI. The nurse was asking me questions and all of the sudden: BAM, it hit me.

Just like the others I had the feeling of deja-vous. Not really of my surroundings but of the feeling I had. I knew exactly what was happening. What is so terrible about my episodes is that I honestly think I am about to die. I think at any second that the lights are going to go out. Each time I tell whomever is around me that they be sure to tell my wife and daughter that I love them.

These episodes terrify me. Each time, as they hit me, I know that even though these have happened before this one is going to be the one that kills me. I hate this feeling. Afterwards I am ok; just tired.

Does anyone else have anything similar happen to them? Any experience with Keppra?

 

[alivenwell]

I've heard from others in here that Keppra can cause extreme mood swings. They take magnesium ( I think it can cause diarrhea if too much is taken) to even out their emotional state.
I've been on the dilantin, but that's an ancient drug that can cause adverse side effects one one's gums, and add to osteoporosis. I have a slight case of osteoporosis from taking that for many years. I think weight bearing exercise really helped me keep my body intact. I could afford that one.
I have the same kind of seizures as you, but I'm on different meds now. Lamictal is one of those drugs. Others in here have not always tolerated lamictal well. Mysoline metabolizes into phenobarbital. Keppra has a slow release version as well which may be the best for you.
Get your magnesium from green vegetables. Supplements do help, but food would be my personal preference.

 

[garfield33]

Yes my doctor informed me of the possible "irritability" it can cause. I'm just hoping I am one of those it does not affect in that way. We'll see.

Glad to know I'm not the only one who thinks I'm dying when I have these episodes..........it is SUCH a terrifying feeling.

 

[Aicila]

I also have close to the same type of siezures you do. I don't think I ever thought of myself so much as dieing, but it is a pretty intense feeling. I usually forget what I think about, but I usually remember the feelings.

 

[garfield33]

Yeah it is pretty terrifying. I guess after having five of them I should know that I am not actually dying but each time it comes on I just know that this time will be it. Very strange feeling.

 

[charwva]

Just wanted to say thanx for the infro on B viamints. Your infro helps so much. Once again THANX!!:e::wave:

 

[valeriedl]

Alot of the things that you said happen to me before and during a seizure.

I don't know they are coming and next thing I know I had a seizure.

I also can't form sentences well, I know the word I'm trying to say, but it just won't come out. Alot of the time I will just mumble. I think I'm saying the word but it just comes out as slured speech.

I'll do some sort of repeated movement while having the seizure. I don't know if you are aware of when you are picking your finger nails or not.

I'll also become disoriented. I don't know where I am or what I'm doing. I've even done things without knowing I'm doing it. I once loaded the dishwasher, all the stuff was put in all the wrong places, but I didn't know I had done it until the next time I opened it and saw the mess.

I'll also fall asleep after one and will sleep forever. The next day I'm still very tired and will sleep for most of it too.

I'll have a very bad headache after one, I don't know if you get one or not. These headaches will last for hours and nothing that I've tried has helped them. I'll lay with a bag of ice on my head while I'm sleeping.

I take several meds, dilantan is not one of them, I'm alergic to it. I'm on keppra and I have severe mood swings. I've snapped on people in public places with out even a second thought about it if they are doing something that is driving me crazy. I can't stand being around kids. All the things that kids do that is normal - running around, getting into things, yelling etc... I believe it's called keprage.

 

[valeriedl]

Is there any way to get in to see your neuro any sooner? I'd think after having the MRI he would want to discuss the results sooner than that long of a time.