a newbie, but a question....

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lovin diz

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I have had epilepsy since i was 13, (i am now 32). Diagnosed with complex partial seizures. They were very much under control with meds, i even got off of meds for about 5 or 6 years. But the past 3 months have been aweful.

I was put on kepra a few years ago, after i had one, while not on any meds. I was fine. I started to loose weight and my metabolism was messed up, and for 3 months now, i have been having seizures. Grand Mal Seizures. the doctor was weaning me off kepra, and on vimpat, and i had another seizure tuesday...it always takes me time to find the right med that works for me, so that really doesnt bother me....

What bothers me, is i am seeing aura's throughout the day. It is driving me crazy. Usually this is a sign that i am going to have a seizure, but i cant stop having them. Has anyone else had this problem??
 
Auras? No....but I went from meds working great to having to change meds because they quit working. :) And then I had to change meds again when I got pregnant. Have you told your doc about the auras? Some meds can cause really odd side effects. My Dilantin level was too high and I was losing balance and tripping over my tongue....
 
Auras

I use to get auras (visual auras - seeing something (anything) and would bring me back to childhood = the deja vu) and would get this constantly. This was prior to be diagnosed with E and I just dealt with them. To be honest, except that it drained me and bugged me out since I didn't know what it was, I really didn't mind them. But yes, I use to get auras constantly because they were visual type auras and we're always seeing something. Obviously you would need to alter your meds and that should go away, but YES I too had them for a long time on a constant basis but I wasn't taking anything nor did I know what it was. GOOD LUCK
 
i went to the dr yesterday

he said he had never heard of that. but he thought vimpat was causing me to have a constant aura. He took me off of it immed. I also had an eeg. It has always showed an abnormal brain at the left frontal lobe. Well, it showed abnormal throughout my entire brain:dontknow:the doctor will be calling me tuesday to speak with me about this.

i am now worried about this. Before this, he said he thought i would outgrow them in my 40's. Now it seems to be getting worse. i am worried.....

Thanks everyone, i guess i just need someone to talk to.

Stacie
 
Ask your doctor if he has ever done any research on Neurofeedback. It is a way to help stabilize the brain function. A bit like exercise for the brain so that all parts work in unison. The brain can learn to seize. This is known as kindling. Your's might just be instable and the meds are confusing it.

Just a thought from someone that believes in Neurofeedback.
 
lovin diz, you might want to get the book & its workbook, "Taking control of Your Epilepsy" byJoel Reiter, M.D., Donna Andrews & Charlotte Janis; April 1987.

The edition I have is published by: "The BASICS Company", Santa Rosa CA

I would also expect that there would be more current publications of those books, as the research becomes more fine-tuned.
 
McGill - I just did a search for that book and it is listed at $423.00
A bit steep, at least for my pocketbook. If there are some suggestions that you can summarize that might be helpful.
 
Robin, I don't have the book. Lovin diz might want to try and get an "Inter-Library Loan" through his dr. from one of the major medical institutions such as the Mayo or Lahey Clinics. It should be in any Medical School's library b/c one of the authors is a neurologist and another is an R.N. If lovin diz lives in a city where there is a medical school, I'd go there and check out to see whether or not the book is among their holdings.

The workbook I have is very much "hands on" between the patient, psychologist and neurologist. There are exercises which the patient MUST complete as well as mandatory counselling sessions. There is also a good deal of how one perceives one's self as well as one's emotions & ability to handle stress, Rx therapy, what one sees, various experiences such as deja vu, etc. It also asks the patient to quatify how many times (s)he has had these experiences as well as keeping Rx & seizure journals.
 
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Thanks everyone for your advice. I will look to see if they have the book, and im just saying my prayers that the zonegran (sp?) will work.
 
Hello lovin diz, :)
I'm new to epilepsy. At present I get auras every single day, though since my tablets have been increased to 1000mg they don't seem to last very long. I may just get a random light appear then disappear within seconds etc. Before my tablets increased I used to see anything i.e. floating numbers, lights, flashes, zig zags, random colours, double vision, sometimes it looked as though I was looking through a crystal ball, blurred vision (though my eyesight is normally great), colourful grids etc. Sometimes my auras especially blurred vision could last nearly a whole day. I felt drunk with it (everywhere looking as though it's moving) and sometimes would get a horrible migraine afterwards. When I have a big seizure, everywhere begins to spin and sometimes I can hear a haunted voice or song in my head which terrifies me. :crying: I then have my seizure which can last up to 45mins. My doctor nor Neurologist wont let me go back to work yet. I have been off now since the end of June 09, which upsets me :cry: because I have never had anytime off work for illness since I have worked at this place (3 years) and now I have been off since end of June.
I hope you get things sorted.
Best Wishes
Debbie
:rose:
 
Deb12345, I've read what you posted. Have you ever been tested for vertigo? The secretary @ work gets bouts of vertigo as well as the headaches which you describe, but never any of the seizure activity which you described.
 
Deb,

it sounds like your doctors are concerned that your meds are not stable enough yet. Perhaps you have a couple of different kinds of seizures, and one is generalizing into the other. That happens quite a bit.

Balance problems are also a problem with E patients--heaven knows I have them. They are usually a result of meds, though. For example, one balance problem sometimes brought on/aggravated by AEDs is NYSTAGMUS. It has to do with the eye's ability to track, and focus on what it's supposed to track. This makes one's ability to stay still or even stay standing very difficult, or in some cases (me) next to impossible. VERTIGO is tied to the pressure within the inner ears.

Take care, and good luck,

Meetz
:rock:
 
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