My absence seizures are too much to bear

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9 Comments

Yes!

I will go into great detail later tonight or tomorrow, so watch this space!

My wife of 16 years has seizures, both simple partial and complex partial. They first appeared when she was in second grade, did not get diagnosed until she was 20, and are now only partially controlled. She, however, has between 10 to 20 a day currently and, at her worst, was having 20-50 per day. When we had her medications dialed in correctly, she didn't have any for months at a time.

I have extensive experience with this seizure type and was, in fact, the first to correctly diagnose her, so I am well aware of what you are going through.

First, I would ask you what kind of medical treatment you have had, who made the diagnosis, and what kind of medications you have been on. Being that you had your first seizure at 26 I would strongly suggest that you get an MRI if you have not already done so.

Second, these are not absence seizures. Absence seizures involve a zoning out and are actually, while it may not appear so, a full loss of consciousness.

Third, the loss of since of self and of floating in a void are called depersonalization and are more indications more of simple partial seizures than of complex.

Fourth, you do not mention tremors, nor what is know as a Jacksonian march, which again, indicates simple partial versus complex partial.

Finally, what you need to remember is that the fact that you have these seizures will likely make you have pseudo seizures. Pseudo seizures are not actually seizures, but are instead more like anxiety attacks that feel exactly like seizures due to the fact that your brain is used to reacting to the set of symptoms associated with the anxiety in a certain way because it is so common an early symptom of your seizures that it duplicates the effect without you actually having a seizure.

Give me a full symptom list, tell me what meds you have tried before, and provide whatever other information you think may be relevant, and I will be able to help you further.

Remember, if my wife can have her seizures controlled and live a normal life when she started with 20-50 a day, it is almost a guarantee that you should be able to get yours controlled when you are only having 1-3 per week.

You've got it:

Symptoms:

- Initial aura, sense of time/self altering
- Huge shift of consciousness occurs while I literally sit there and watch...I do not just 'disappear'
- Sometimes I have little 'automatisms,' but I remember doing them. I may rub my face, or turn my head to the side, or shiver.
- I can go really far from recognizing anything around me. Doctors, family and friends have sat me down during one and say that I just look utterly confused (I'm in utter fear).
- I have tried to walk into someone else's house during one (police called).
- I have gone on aimless walks while totally lost during one
- It takes me several minutes to regain my memory of what I was doing before the seizure after I come back
- Before meds/treatment I could zone out for up to 40 minutes, in a trance. I would interact with others but would not have any waking awareness.
- In the past (at different times) I have taken select seratonin reuptake inhibitors (SSRIs), carbamazapene, valproic acid, valium, tegretol, and maybe zonegran. I now take trileptal and valium.
- I had a partial MRI without the injections. That and other scans showed a calcification (benign) that could possibly be the cause.
- 14 years ago I hit my head on the concrete and was knocked out cold, taken to the ER, and that might have caused it, although I remember having mild depersonalization episodes when I was ill with a fever as a thirteen year old (20 years ago).
- Before the partial seizures came the grand mal seizures, beginning not long after the blow to the head. I had one in 1995, 1996, 1998, and a few others as the years have passed.

Thanks for caring! I really get a sense of hope when people show concern like you do. All the best

OK, now THAT sounds like Temporal Lobe Epilepsy and Complex Partial Seizures. The automatisms you describe are classic symptoms.

Here is a link that you will find very helpful:

http://www.crazymeds.us/trileptal.html

It is a website written by a TLE sufferer who has all the information about the meds and the condition and breaks them down into informative, easy to read and VERY funny product information sheets.

Also, Valium I would not recommend. While it does have some anti-seizure properties, it is quite addictive and has diminishing returns over time. Additionally, you will end up using it as a crutch to deal with the anxiety you must feel about having a seizure in public.

While your seizures seem to be pretty well controlled, they are not as controlled as they could be with the right medications. Go to your neurologist and get the medications dialed in better.

SSRI's should only be used to treat depression as a last resort medication for people with seizures as they decrease seizure thresholds and increase the likelihood of seizures.

Remember, YOU are in charge of your treatment, not your doctor. Find out everything you can and be assertive. Your doctor is a busy guy who will only spend as much time with you as is needed to do a cursory exam (don't blame him for this fact, it has more to do with the HMO's.) Being as your doctor has only a brief skimming of your history and the short time you spend in the office with him to go on, while you have years of experience with your disorder, you actually know more than him and you need to act as though you are the authority. A neurologist may be an expert in seizure disorders in general, but the PATIENT is the ultimate expert in their specific seizure disorder.

Take charge of your treatment and meds by studying in depth TLE and its treatment and bring that information to your doctor. If you take charge and are informed, your doctor will appreciate it and be more effective.

If you have any questions, feel free to ask. I am now quite the authority on these things.

Best of luck!

Wow - thanks for the encouragement. I felt like my seizures were totally uncontrolled, but now I realize that I'm lucky to only be having one every 1-3 days. If I were having 30-50 of these episodes a day I would probably murder myself...at least I'm able to interact with the world around me and come across as normal to most people most of the time. Anybody I get to know usually sees me have one within a few weeks of befriending me, but I guess I can count myself lucky.

Your observations and advice are greatly appreciated. I agree that Valium is an immensely powerful and physically/psychologically addictive substance. I will reevaluate my medication, but I forgot to mention that I have also already taken Zonegran. I've already had more than 3 meds fail to contain these seizures. You have helped me so much. I will take more control as you say. Thank you immensely for your support.

Hey, if you really are that sad, then find somebody who is caring, sensitive, and nice, and get together with them. It doesn't matter if it's a boy or a girl, or a romantic or friendship relationship!
:3
Thats my advice!

hi my name is james

my girlfriend has the same problem and controls her life , for the last 2 years made her life hell and puts a lot on me but from what i have learnt you have to make the most of what you have

If it is severely affecting your life, you should talk to a doctor about this. If nothing else works, in extreme cases, brain surgery.

There ARE options to ease this for you. Please don't give up.

My fiancee had problem that was diagnosed as pseudo seizures by a neurologist. She would collapse, and when she came too, she wouldn't know who she was, or where she was for quite awhile. Occasionally she would be unable to see or to hear after. It was terrifying a few times. Once I had to run outside at 4 am when I woke up and she was gone, and I found her a few blocks away fortunately. There was also an occasion when we were driving and she came through and almost jumped out of a moving car going 70 miles an hour down the highway because she didn't know who we were. I was afraid to stop, because she might run off, and I was afraid to keep going as she might jump. It normally took her about an hour to remember who she was. She would normally do this three or four times a day. Fortunately after about a year and a half it stopped.