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    Confused newbie....
    5frogs posted:
    Ok I'm new to health problems in general so it gets confusing. On Jan 6, 2012 my optomitrist did his exam with results that startled me. He wrote a prescription for an emergency mri. I went straight to the hospital for the test. AfterI was done the tech said it would be 3 or 4 days for the results. By the time I got home (40 min) the optomatrist was calling with the results. I had a tumor. Then on the 9th i was in the neurosurgeons office. The tumor was the size of a golf ball pressing on my right optic nerve and pushing my brain down my spinal cord. I was checked into the hospital that day and surgery was set for the 10th. All went well with the recovery and I only spent 4 days in the hospital. So I had a question. In Aug I had a (grand mal?) siezure that my Husband said lasted about 15 min. convulsions, loss of conciousness, and what my hubby describes as the death gurgle, and I remember nothing. I was asleep when it started and woke him when my arm hit him in the face. I'm glad he knew proper protocal! So is it generally one seizure that lasts that long? or multiple overlaping? Is it common to hurt for months after? I've had back, shoulder, and rib pains ever since. They took xray at the er and did a ekg and mri to which all normal as I remember it. Also could the smell or chemicals of hair dye cause a seizure? I did dye my hair right before bed.
    dancer86442 responded:
    Hello 5frogs,

    Have you discussed your 'episode' with a Neurologist? So, Question for Hubby??? Did you activity Pause, say seconds, minutes, & restart. Or was it All one LOOONG Episode? 15 minute LOOONG, w/ no pause is called status epilepticus & requires Medical Assistance & ER ASAP!

    After an Episode that long, yes, you would hurt for months. Hot Packs or Heat Pad does wonders along w/ 2-3 Ibupropen. And try an Epsom Salt Bath. SUPERVISED!

    There are a Lot of things that can trigger seizures. Chemical odors may be listed on Phylis site. No need to join to read article. Just type 'weird triggers' in the Search box. Her URL is in Tips &/or Resources.

    Warning, some people can have 1 seizure & never have another. But, considering how long yours lasted, I would be Cautious. No Driving, No bathing. Showering Only. Preferably w/ a video/sound baby monitor. Seizures do not discriminate! They can occur minutes, days, months, yrs apart. Any Age. Your next test should be an EEG. Then a 24-72 hr Portable EEG. If seizures Do re-occur find a Specialist (Epileptologist)

    Another suggestion: Have a Cam corder Handy & Charged. And Please Read our Journal Info located in Tips.

    Keep us up to date. Know we care. Know Seizure Disorder Education is Vital!

    HUGS Love Candi
    5frogs replied to dancer86442's response:
    A week after the episode I went to an already scheduled app with my neurosurgeon. He reviewed the mri from the er and told me to stay on the levetiracetam (2,000 mg a day) that the er started. After 3 months He would start weaning off it so by the one year mark I would be done with it. As to if it was a really long episode or if it was broken up, he said he don't remember it stopping and restarting. So in the precaution and safety area, I stay home with my 5 year old daughter all day and I live out in now where land. I feel it is a bad idea but we have been working on phone skills for emergencies with her. She calls her grandma and her dad regularly for practice. He calls me every hour to check in with me. I haven't been driving anyway since the tumor caused permanent damage to my vision. We have no bath so no worries there. Are hot tubs ok if i'm not alone?
    I am in process of finding a neurologist but it looks like I'll have to go about 4 hours from home to see one.
    I wonder if I have been having them longer than I thought. Before the tumor I had periods of what I thought were day dreams. One night driving 30 miles home I went into "day dream mode" and after pulling into the drive I came out of it and wondered how I got home. I remember being in the car behind the wheel but do not remember driving or landmarks. Its happened before then and after. Now that I've been researching a little it scares me to death.
    Could my "day dreams" be partial seizures?
    dancer86442 replied to 5frogs's response:
    Ok, So you are on a medication for precautionary reasons. Which is Good. Becuz, the 15 min seizure you had is Very Dangerous. Hot tubs are OK as long as supervised. Teaching your Daughter emergency skills is a very good Idea. My daughter was 5 when she witnessed my first seizure. She was w/ me for quite a few after that & I found Children are more resilient then we give them credit for. :0 In fact they seem to understand & cope better than most adults. I didn't have a hubby at the time. She was my caretaker. Knew more than I did. Take note if you have any more of those 'day dreams'. They could indeed be another seizure Type: partial seizures. I know seizure disorders can be Scary, when we first start learning about them. But, 'homework', will eventually, be the best thing you have ever done. Especially when dealing w/ Docs.

    Hope you had a Great Day. Hugs Love Candi
    5frogs replied to dancer86442's response:
    I can't thank you enough for all your help! Should I be concerned about going off the meds? If the risk is high to have another one should I bring it up with the neuro surgeon since I haven't found another specialist yet? I'm already down to 1,000 mg a day and in a month it would go lower. Also can a partial feel like low blood sugar? my parents are both diabetic so I know when sugars are low for them. Some times I don't eat breakfast or lunch and I'm fine and other times if I eat breakfast and by noon I feel sick, hot, sweaty, and very shaky. Still coherent though. it comes on suddenly but fades slowly over the next hour or so.
    5frogs replied to 5frogs's response:
    I also started a journal to keep track. Thanks again!

    dancer86442 replied to 5frogs's response:
    I can't say if the risk is High or Low. You just need to be 'on your toes' & alert to anything you feel is 'out of norm'. I would like to suggest you start some homework about Epilepsy Diets, also. You could start while still on the medication. More Info at A partial can be caused by sugar fluctuations. But, please visit our Resources & clik on Epilepsy That way you will know what symptoms are associated w/ Types of Seizures. The lowering of your meds may be the cause of appetite/eating problems, also. And you already Know to watch what you eat/drink. Have a Good Day. HUGS! Love Candi Kudos on the Daily Journal.
    hula_dancer73 responded:
    do not feel bad about smells causing possible szs. When latex paint is being used I usually throw a sz.

    I live in HI now, but when I was in PHX my mom was using some latex paint to paint something on the house and I had a Complex Partial sz in the garage wehre she was mixing up the paint. minutes later I had another one.

    She can not use tha t ype of paint whenever I am around.

    Neither can my husband, Jasyn.

    When I went with my mom when I was on the mainland to her hairdreser I could smell the nails being done along with the permanent hair solution and dveloped a NASTY Migraine, which later threw me into a sz, but not in there thank God!

    So I guess you can be bothered by strong smells.

    I am.

    Perfume is another one that does damage.

    I ahve broken bones having szs weither they are partial or T/Cs. I have to have Jasyn sitting on the toilet seat while I am in the shower or my 17 year old daughter who has epilepsy herself.

    No it is not thta common to have one szs after another or one long one, but I have been known to do that. I will have 3 back-to-back szs with in minutes apart and then to the ER after that. i hate going to the ER and never call the medics unless I need them.

    I lost a daughter at 13 to epilepsy. She had a rare form of JME that was totally out of control and no one cold get a grip on it to stop it in anyway. JME is Juvenile Myoclonic Epilepsy. Starts in puberty but hers was early on-set.

    My 17 yr old daughter has Full Tonic-Clonics (Grand Mals).

    I have TLE in the left Temporal lobe with 3 lesions near vialt places in that lobe so surgery was not an option for me and now i have a VNS.

    I am not going to run on about that. That you can google. has some VERY good material about all the types of szs and syndromes associated with epilepsy. IT also talks about alternative treatments rather than surgery. like certain diets and the VNS.

    I wet the bed from a little baby until I was 16. neuro now thinks I have had it all my life but never really showed that much and was never picked up on by any doctor until 2003 when I had 2 EEGs 2 weeks apart that were sleep deprived and aactivity showed up on the EEGs.

    I take 3 mgs of Konopin, 600 mgs of Lamictal and 300 mgs of Vimpat (just got the dose cut in two so now I have from 600 mgs to 300 mgs.) When I fly back to the mainland a few days before my appt he will take it away and phase something else in with it called titration and then will try something else.

    I wich you luck in getting everything under some control and take care. Keep talking to Candi she had a very lot of knowledge on all this.


    I live on O'ahu in the Waikiki district of downtown Hoholulu.
    5frogs replied to hula_dancer73's response:
    Thank you for the insight into some triggers. I know the library is a good place to start some research but I have been classified as legally blind since my last post due to damage from the tumor that started all this. Does anyone know if there are audio books on the ep subject? My library is small so they don't have anything. Or maybe a web site that will read out loud to you? My daughter is great to help but she is only 8 and in school all day. I still haven't been diagnosed with ep since I haven't found a neurologist yet. I do have my suspitions now I've done some research. I keep hearing things from my husband about what he notices from my behavior. I just write it down to show the doc ( if I find one). Any tips for finding one in my area? I've tried google with no luck. I'm in north eastern Utah. Anyway thanks again!

    dancer86442 replied to 5frogs's response:
    Talk to the Research Librarian. Your library may be Small, but, the Research Librarian can chek other Libraries thruout the State for available Info that can be Borrowed. I just sent Jason a message. He too is considered 'Blind'. Maybe he will have some More info for you.

    As for Neuros: How close are you to Salt Lake City? I'm not sure, but, there should be an Epilepsy Foundation affiliate in Salt Lake that can help you w/ locating a DR. Also at the Very bottom of this page you will see some more Info in Blue. There is a Physician Directory there that may be useful in assisting you.

    Hugs! Love Candi has a list of Neuros/specialists recommended by others w/ Ep. Maybe a Dr on the list in your area. Use her Search tool to learn about More Seizure triggers. Plus, chek out some of her other articles for even More Info.
    BlazingTiger replied to 5frogs's response:
    Hi Cathi,
    I am the one that Candi was talking about. I am legally blind & have some info for you of different agencies that can help.

    They should also be able to help with a player for them too. They may also be able to help with computer software. I will do some checking into downloadable programs too for you & let you know what I find. Hope that helps.

    dancer86442 replied to BlazingTiger's response:
    Here is a list of Epilepsy Centers. Not sure if UT is on the list. Hopefully it is. Epilepsy Centers are more Likely to have Seizure Specialists (epileptologist)

    Love Candi
    5frogs replied to dancer86442's response:
    Thanks for the tips. I'm still having problems finding a neuro. Utah has a ep center which doesn't take my insurance. I think I found a solution to try tomorrow. Here's hoping it works. The journal I'm keeping is already showing a couple patterns for weird feelings. I don't know if they are partials or what. If I get worked up while cleaning or misbehaving children or spatting with hubby envokes weird sensations. Supid stress! lol! Another weird possable symptom I have now is the feeling of bugs crawling under my skin. I did't switch any soaps or changed my diet except alot less soda pop. I did switch to a lower dose of meds which could be the cause I guess. This is a cause of stress too since my neuro surgeon only makes changes by phone. I hope to find a neuro before I am off the meds. I feel a surgeon shouldn't control the dosage of these meds. Any way thanks again. I like to read answers to others concerns. It triggers questions for me to write down to ask the doc.
    Keep up the great work!
    dancer86442 replied to 5frogs's response:
    Hello Cathi,

    Hope your 'solution' works. OK, Stress Reliever! Sit Down! Take a deep breath thru your nose. Hold 5-10 secs, Release thru Pursed Lips (it's Ok to Whistle. ) longer than inhale. Try this Several times. Walk off & go to another room when 'agitated'. This could be a side effect of your med. But, 'bugs under skin' could be a simple partial seizure. Keep track of These!

    Your Neurosurgeon probably knows as Much, if not more than a Neuro. And Over the Phone is OK, too. I wish My DRS would be that accommodating. Save me some Money!

    Glad to hear you are Lurking & Learning! Yes, keep writing those Questions down. Although we do have 'Questions for Doctors' in our Resources, too.

    HUGS Hope you had a Great Valentine Day. Did you know St. Valentine is our Epilepsy Patron, too?

    Love Candi
    5frogs replied to dancer86442's response:
    Hello! I hope all is well in your neck of the woods. In mine it's ok I guess. I had no luck with finding a neuro yet. The NS I've seen wont return my calls so I wondered if you can answer a question for me. I know your not a doc but, how long should it take to wean off meds? The amount I'm at now is 500mg of Levetiracetam at noon. In two weeks it will run out with no refills. Is this too high a dose to stop all at once? I know it was mostly for prevention in my case to begin with I just don't want any further problems if it could be helped. Thanks!


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