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Thread: First time here....first time being (tentatively) diagnosed with seizures....

  1. #1

    Default First time here....first time being (tentatively) diagnosed with seizures....

    I have no clue what I'm doing here....just that I had an episode of some sort, a blip on the EEG, and the hospital neuro working me up for left temporal lobe epilepsy.....I was advised to keep a seizure log. Only problem is, I don't know when/if I am having a seizure. Even the episode that landed me in the hospital was not with me jerking or flailing on the floor as seizures are commonly displayed....

    I had a second opinion visit with a different neurologist who didn't think I was having seizures and thinks I may have had a migraine black out. Only problem is, I don't get migraines. I rarely get headaches. I don't get migraines.

    This is so very frustrating. No one seems to know what's going on. I can't drive (which is frustratingly difficult as a mother of four). The meds they have me taking as a precaution (Trileptal) seems to be giving me a rash. I can't get the prescribing doctor to call me back on this, but from what I read, it is not advisable to quit taking it cold turkey. I feel as if I am in "hurry up and wait" mode.

    Anyone else out there experience anything similar to this?

  2. #2
    Distinguished Community Member tic chick's Avatar
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    Oct 2006


    glad you found BT, maried2leo !

    there is an epilepsy forum here: it's under the "neurological disorders and injury" section, about halfway down the forums page.

    a lot of meds give skin reactions, i've taken a few of those. yes, do not stop taking trileptal without a weaning off program from your doctor.

    maybe your hubby, leo, could write down when he thinks something is happening to you? i'm not familiar with migraines or epilepsy, so i can't help you much more than this.

    there are a lot of great and informed people in the epilepsy forums. just copy and paste your question there. i'm sure you will find good help!

    take care of yourself,
    WE ARE BT!
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  3. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    Oct 2006
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    Welcome to Braintalk!

    As Jeannie suggested, please do copy and paste your post on the Epilepsy forum, where you can gain insight from the experts ~ people with epilepsy.

    I suggest that you also let Google be your friend, and start researching epilepsy and migraines, as well as your symptoms.

    There are a variety of seizure types, some even relate to smells, while others cause uncontrollable laughter (Gelastic). Once you read about the various types, you'll be more able to recognize any symptoms you might have, which you may have otherwise ignored or disregarded.

    Seizures and migraines can be related. They close cousins. So both neuros could be correct. You could have both.

    If you develop any flu-like symptoms, along with the rash, I suggest that you make a visit to the ER. If possible, try to make an appt. with your prescribing physician, so that he can see the rash and determine whether it is serious.

    Wishing you well ~

    Love & Light,

    Mom to Jon, 49, and Michael, 32, who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003. Our Angel Jon received his wings April 2019. April 2020, Jim, the world's most wonderful Dad, joined them. Now, they all watch over me.

  4. #4
    Community Member Firehorse's Avatar
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    Jan 2007
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    Hi, welcome to BrainTalk Communities.

    I have some experience with seizures and the medications used to treat them, so I'll let loose with some basics.

    Yes, there are many different types of seizures. These are grouped into three main types. These range from Simple Partials, that are focused in a localized areas of the brain, and do not usually impair consciousness. With simple partials, the person almost always has full memory of the incident. They are then further specifically described by the area of focus, or area in the brain that they effect. For example, the motor, olfactory, or somatosensory, to name a few. Complex Partials, involve a bit more of the brain, and do impair consciousness to various degrees, and the person may or may not remember having the seizure. Generalized seizures, are where both hemispheres of the brain are effected. Each of these groups has subtypes that further describe the seizure. For example, the generalized seizures can be Primarily Generalized (Effecting both hemispheres from the onset) or Secondarily Generalized, (Starting as a Simple or Complex Partial, then spreading to involve the both hemispheres). Among the generalized seizures are those known as Tonic-Clonic, or "Grand Mal, characterized by unconsciousness, stiffening of the body, then shaking, and usually the person stops breathing for a short while. A person can also have very similar seizures to this with only one of the aspects, and so named, tonic (stiffening), or clonic (shaking), but these are more rare. Some other types of generalized seizures include Absence, or "Petit Mal"; Atonic seizures, or "Drop Attacks", and Myoclonus.

    Keeping a log of what happens, when, and a description of what it looked like can be extremely useful to both you and your doctor. (especially valuable would be a 2nd party's observations) If you could have someone video of one or more of the episodes, this would be extremely helpful for evaluation and diagnosis.

    Also remember everyone is unique, and nobody's seizures are exactly the same as another person's.

    As far as the rash with the medication goes, it could be one of several possibilities. It is imperative that you be checked by a doctor familiar with these types of drug related rashes. These range from the not so serious; simple common allergic reactions, to the extremely serious and rare; one that involves a potentially fatal reaction.

    Unfortunately, the pathology of Migraines, is much less understood than seizures. Not that seizures are totally understood either. The cause for mine has never been discovered, and I have had them now for over 35 years. They don't need to involve pain. They can manifest as nausea, "flashing colors" or "lights", and other sensory "hallucinations" such as smells.

    I want you to know that is in no way a complete list, I am simply giving a quick rundown of the top of my head.

    I wish you the best, and again, welcome to BrainTalk Communities.
    If you have any further questions don't hesitate to visit the Epilepsy forum.

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