I typed this out in another forum asking about my Kepra medication, but thought I should put it here in the forum about Epilepsy. Doh!

I have 6 diseases, a month ago we started testing for #7. We thought it was MS. Imagine my surprise when, last week, my Neurologist tells me that the tests came back saying I have Epilepsy. She's very low key and downplays everything normally. She said my EEG was "severely abnormal" and "very, very abnormal". I was so stunned that I had to ask her five times if she was sure I had it and, "So you're saying that I have Epilepsy." FIVE TIMES. I'm still shell shocked about it.

I turn 48 in May and have never had outright seizures before that people would notice. I can remember as early as my 20's having this "tense, tense up more tense way up and POP!" thing happen. At the pop! I'd give one giant shake like a dog after a bath. Then I'd have to lay down as I was super tired. That was it. I'd had EEGS for other things (hey you don't get diagnosed with 6 diseases and not have EEGs, lol) but none were this in depth. The dr. said that tense, tense POP thing were seizures. Also the symptoms that I'd been having lately with waves of "exhaustion" hitting me and partial face numbness (have you ever had your nose go numb? it's totally weird) and losing the ability to speak clearly. Those were seizures.

So last Wednesday, after I got the news, I was prescribed (generic) Kepra. I started taking it that day. 500mg 2x a day (12 hours apart). I was ok until I woke up Saturday where I just felt "off". I knew a seizure was coming. But I was thinking, "tense, tense POP!" A few times that day I even went into my master bedroom, where my husband was working on his computer, to lay down where he was in case it happened. Nothing happened.

Saturday night/Sunday a.m - 2am to be exact, I woke up having a massive grand mal seizure. The kind of seizure you think of when you think of epilepsy. I even had scratched up and down both arms, really hurt my neck (I have Syringomyelia in my cervical spinal cord so I have to be super careful with my neck) and just freaked out. I called and left my dr. a msg. asking if the Kepra can cause seizures when you first start taking it. I also called my pharmacist and asked him. He said, "no".

The dr. called back 1st thing this morning and said that you can still have seizures when you first start taking the medicine but it doesn't cause it. AND, apparently the type of seizures that I had been having all along are capable of turning into grand mal seizures. So now, when I have a seizure, it will be a grand mal. The switch has been flipped. I'm very sad about this.

I was also informed that my driving privileges are being revoked for 3 months. In the State of Arizona, if you black out (or have your consciousness altered by a seizure), you lose your driving privileges for 3 months. They HAVE to report you to the DPS. So now I've lost my freedom to drive. That freedom meant everything to me. Even with all these crappy diseases and all this pain, I was still able to come and go as I pleased. But now even that's been taken from me.

I'm wondering if anyone can share experiences of taking Kepra - specifically generic Kepra - and can tell me it gets better. I have an 11 year old son that I home school and I really don't want our lives turned upside down any more than it is with me being sick. I work really hard to seem "normal" and to serve others so that my focus is not on myself. I would like to continue with that. If I focus on me, then it's bad. I want to still be able to help others and show my son that we should always help those in need so that we don't wallow in self pity.

Any words of wisdom? Thanks in advance.

They also found a very, very tiny cyst in the very center of my brain. She said there's nothing to worry about regarding that. Um...yeah...don't worry... LOL

Raigne,

I spoke to you earlier in the welcome forum. Sad to here that you are having difficult with your situation. I have had epilepsy since I was 10, ecept that I was lucky after I had a surgery where I have been seizure free. I went for around 45 years having seizures.

When you start a new medication, it may take awhile before you have enought in your system to take effect. Some medicine work with some people and not so good with others. I myself Keppra is one I am taking where it helping me, I choose to keep taking it because I was controlled but just didn't want to take a chance.

Here are somethings I would like you to check out. My advice to you is have your Dr. refer you to see a Epileptologist (Dr. specializing in Epilepsy) and go to a Epilepsy Center. These places are found at large hospitals or university hospitals. These Drs. will do a series of tests on you and this will help the them fine exactly what's going on with your situtation. One other thing to do is taking vitamin B12 1000 mcg. once a day for adult. Afford being around strong flashing lights like at theater, you could wear sunglasses. Also at the theater just make sure you turn your head and shut your eyes during flashing back grounds.

Please keep us up to date on your situation. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene

Darlene, "Once a Texan, Always a Texan"? I LOVE IT! I'm a Texan. I don't currently live in the world's best place, but no matter where I am I always find another Texan.

Thank you so much for your advice (and I do remember you from your sweet welcome when I joined this forum!). I intend to stay with the Kepra as I actually do feel better on it. Just that one day freaked me out. The dr said I was probably heading for that regardless and it was good I'd been diagnosed and started on the meds before it happened. Can you imagine that happening with me still having no clue I had epilepsy?? Talk about freaking out!

Because of my special circumstances with all the brain/spinal/autoimmune diseases my specialists are all Barrow-trained (Barrow teaching hospital here in Phoenix). I will ask her on my next appt if she can recommend an epilepsy specialist from Barrow so I can do what you've recommended. I know that she's a specialist in Neurology, but she's also extra trained on other things. I know she has some special EEG training, etc but not sure about her Epilepsy specialization. I want to get the most and the most clear information I can. We need to have a family training session so that we're all aware of what could happen and what to do if a seizure does happen and Daddy isn't home.

I have a friend with Epilepsy who's only had 6 seizures in 16 years and she said each time is because she accidentally forgot her medicine. Did you have breakthrough seizures at any time? I'm so glad you were able to have the surgery to stop the seizures. That must be such a relief!!

Also thank you so much for the info on the B12. I'm going to the Vitamin Shoppe tomorrow to stock up on my Potassium, etc and I will add B12 (1000 mcg) into the mix. I really appreciate your input, because I have no clue about any of this stuff. The dr. is making me take the medicine for a month before coming back in - though if I'm having any difficulties I can come back in immediately. She wants me to keep record and write down questions so I can not forget to ask things.

I'm babbling again...I do that often... Thank you for being here and for offering your advice, Darlene. I really appreciate you.

Hi Raigne,
Welcome to the forum! Darlene gave you some great advice seeing an Epileptologist and taking vitamin B12. A few yrs. ago I was taking keppra but the drug didn't work that well for me it caused me sz. to increase. I found the best thing to do to find the correct sz. med is to have a DNA test done and then the Dr. can see your bodies chemical and enzymes and match them up to the correct sz. meds for you with the least side effects.
Often when a woman goes through her change that can either increase or decrease their sz. When I went through my change my sz. decreased and I found that eating any type of nuts or using natural progesterone cream on my skin helped stop the sz.
I've had epilepsy for 42 yrs. and had 2 brain surgeries to help reduce my sz. and it was well worth it. One thing that concerns me is the cyst that you mentioned that may be part of the reason why you are having sz. it may be throwing off to much electrical activity in your brain which in turn will trigger a sz. Also if you are having sz. at night when you are in bed you may be having myoclonic sz. which means the sz. happens when you go to bed or when you first get up in the morning this happened to me a few yrs. ago then I started taking vimpat and that stopped this type of sz. You may want to ask your Dr. to do a sleep study on you to see if you are having sz. in your sleep or if you have sleep apnea or any other sleep disorder that may be triggering the sz. I had to have one done last spring and I was having sz. in my sleep which I didn't even realize I just felt more tired in the morning when I woke up. You are playing in smart keeping track of your sz. by writing them down on a calendar by doing this the Dr. may see a pattern in your sz. as to what time of day/night the sz. happens and what days of the month. My Epileptologist found a pattern with my sz. I always have them the 1st and 3rd week of the month. Be sure to cut back on starch foods and carbs also stay away from anything with nutra sweet in it because it has been proven that these types of foods and chemicals can trigger sz. for many people. I wish you the best of luck and May God Bless You!
Sue

Sue, thank you so much for your sweet reply and the great info!

I've actually been thru "the change" (had to have a complete hysterectomy after the birth of my son 11 years ago) and was just diagnosed with the Epilepsy last week, so I'm hoping the medicine will be tweaked as we go along, but that nothing big will have to be changed.

I intend to take you and Darlene's advice about getting referred to an Epilepsy specialist. I'm think that's exactly what I need because of all the other diseases (6!) I have to deal with.

I can't really do sleep studies because I don't really sleep. I've actually had 4 sleep studies but they never work because I don't sleep enough for them to test anything. I did have a CPAP machine for a few years when I was really overweight but I've lost 130 lbs (gastric bypass surgery) and no longer need it. The problem is my brain won't slow down enough to allow me to get to sleep. Though I must say that the Keppra has actually given me my best sleep in 20 years - even after brain surgery in 2004 I didn't sleep much! I had complete med failure last night as I had taken my Kepra, 2 amitriptyline, 2 morphine and 1 extra strength tylenol and didn't sleep. Then I had to take my pain meds because sleep failed to happen and I'd been without pain meds for 6 hours so I had to take 1 hydrocodone 10/325 and my cyclopbenzaprine muscle relaxer. Still no sleep. It happens. I have times where I walk around like a zombie. Hoping the Keppra helps my body learn to sleep more.

The cyst is so tiny, according to the radiologist who read the report and my neuro who went over it with a fine toothed comb (lol) that it's doing nothing to impare anything (her words). It's just there. Scary for me is that it wasn't in my last MRI on my brain a year ago. I can't have contrast on MRI's because I'm deathly allergic to gadolinium contrast (I nearly died once...that was scary...) and because of that near death, after about 100 MRI's my body now goes into "Fight or Flight" panic attack and I have to have open MRI's. So now I never get good detailed MRI's. Which means they saw this "cyst" on a crappy scan. I asked about a million times if there was a danger with this growing or if it caused the Epilepsy problem and a ton of other questions that I'm too tired to remember right now.

I have been tweaking my diet to eat a bit cleaner (staying away from more carbs and there's no nutra sweet in my diet as I get aspartame headaches). I do use Splenda once in a while, but I've nearly cut that out completely too. I just want the medicine to work and for me to get used to it so that I can drive again in three months and not worry about having a seizure. That may seem like a pipe dream, but I live with 7 diseases now so I'm all about hope.

I have an update about taking the Keppra. I'll just share what I had in another thread I started. I want people to know what happened in case it happens to them:

I've been on Keppra for 9 days. A few days ago I started itching on my lower stomach and my right eye. I thought nothing of the tummy itching. Maybe dry skin (hey, it's Phoenix and dry is a given around here) and the eye was probably allergies.

Today I actually LOOKED at my lower abdomen and there was a rash. A raised, red, bumpy, OMGOSH, rash. And my eye is still driving me nuts. So I looked all over online about Keppra side effects. It said if you get a rash, "no matter how small or mild" to "call your doctor immediately." So I called the dr and was told to quit the Keppra NOW. And that I had to go in to see her on Monday (the PA was the one who called). I said, "I will have seizures all weekend if you take me off the Keppra and I had a grand mal this last time to which you guys said all my seizures will now be grand mal."

The PA said, "Yes, we realize you will have seizures. You'll have to take precautions." I said, "You don't understand. I have a SYRINX in my cervical spinal cord. That's a pocket of brain fluid that has severely damaged my spinal cord. My neck can snap extremely easily. And if I"m flopping around like I did last Saturday - ONE TIME - I'm in danger. I CAN'T go cold turkey." He explained that they have to stop the reaction because it is known to cause a condition where the skin will literally peel away.

The lesser of the two evils is I live with skin peeling away as opposed to dying from a fragile spinal cord. He said he'd call me back and went to talk to the dr. He called back and they called in another anti-seizure med. I couldn't understand what he said because his accent is very, very thick. It began with a B and almost sounded like "bitmap" though I know that's not it.

I also told him this rash is like the rash I get when hospital tape touches my skin. It spreads til we stop it with steroids. Last time I had the rash spread from belly button to knees from having one piece of hospital tape over an incision on my stomach. I ended up getting two big time shots, a topical cream AND a medrol dosepack of prednisone.

I told the PA I happened to have a dose pack of prednisone and asked if I should take it. He said, "Yes of course, take it." He was making decisions on the fly and I finally said, "Look, I have 7 diseases, I take handfuls of medicine each day, you need to be SURE about things - I'm not your normal patient." He said he was sure and that I was to call if there were any problems.

(sigh). Anyone else ever have the rash reaction to seizure meds? I can't take Gapapentin (Neurontin) or anything in that family because of psychosis, and I'm kind of freaking out right now. I HATE that I'm this sick and I can't just be an easy fix. I already figure I'll end up in the ER this weekend...


The name of the new drug is Vimpat. I can't stay on it - it's $88.00 a month. I have 6 other diseases besides Epilepsy and I take a BUNCH of prescription meds - no way can we afford this. AND I'm still itching. Still have patch on lower abdomen (below belly button) and my right eye itself is jacked up. Gonna try to get in on Monday. I just got news from Texas that my mom was rushed to the hospital and she's in such bad shape they moved her to a nursing home type facility to get her back on her feet. She literally has been unable to step foot out of her house for SEVEN weeks. I just discovered (via phone conversations) how bad she's been doing - and one of my brothers lives there. He had back surgery last June and isn't doing anything to make his recovery from the surgery better so now he's all jacked up and wasn't taking care of my mom. I'm a wreck. I'm not stable enough for travel with all these things hitting at once. Gonna have to put my money where my mouth is and trust the Lord.

Raigne,

Sad to hear about the trouble you had with Keppra. There alway seems to have trouble for one on a medicine and the other ones are just great on it. I myself have had good luck with Keppra. Hopefully your doctor can find the right medicine to assist you with your epilepsy. My thoughts and prayers are with you.

Darlene

Hi Raigne, So sorry to here all this. I read your string of posts and am new here myself so I can't post links yet.
My daughter has TSC, a genetic condition w/ no cure causing the body to grow tubers in major organs. She has 6 in her brain 2 of which are causing seizures.

I am here to learn more after she obtained amazing benefits years back from Electrolyzed-Reduced Water and another product regardless of anything the best Epi docs could do for her AND to share with others complimentary ways to help knock out the source of many chronic conditions as my way of paying forward the amazing quality of life they provided my child.

I wonder if there is not possibly one underlying factor thats out of control and wreaking havoc in many ways for you? You mentioned Auto-Immune, Syringa and now Epi. What are the others if you would like to share?

Pat,

It is great to have you come and be with us. You will fine a great number of dear friends to listen when you are in need of ears. Please let us know how we can help you out. You will find out we are supportive and relaxing place.

Please keep us up to date on her condition. Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene