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Old 08-04-2012, 01:20 PM
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If I should go on medication...


Hi Everyone,

I've had 3 seizures this month so far and I have my first doctors appointment on Monday. I'll be following up with a Neurologist sometime this month. (I have no insurance so I have to take things a step at a time financially)

My question is, should they decide to place me on medication is there anything I should question? It would seem Keppera is prescribe quite often but I've read horror stories online. Mood swings, anger, depression etc.

Is it essentially trial and error or is there a medication most members here feel more comfortable using? Also, I'll mostly likely choose generic if it's an option, anything I should be concerned about? (fillers)

Thanks as always.
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Old 08-04-2012, 01:54 PM
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My thought would be "why" go straight to prescription medicines until you have ruled out the possible influencers that may be contributing to or even causing your seizures as well as made dietary lifestyle changes with a Ketogenic (Low Carb - High Good Fat) Style Diet to include adding critical supplements like B6 and Magnesium Malate to name a couple? Have you thought about MCT Oils as well? Are you getting enough sleep? How much MSG and Aspartame do you consume now? You may end up on meds in the end but why start there first? Go slow and do the research and the practical work first. Read RobinN's great posts front to back as a start. While it may be scary and confusing at this time slow things down and take charge. It will certainly require a different set of rules until you get it all worked out as well as time but consider the alternatives. Best wishes as you begin your journey.....
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Old 08-04-2012, 02:27 PM
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I'd rather not honestly but I can only assume that might be the case. If I can avoid it that's definitely something I'd be willing to give a shot. I run my own business and this ordeal is starting to effect things. I've learned a lot over the last couple of weeks and continue daily to learn more about the condition.

I eat quite well as it is, I exercise though not as often as some. I don't eat fast food often nor do I eat high fatty foods. (I used to in my teenage years) I stay away from Aspartame and always have as a personal preference. I don't drink Soda let alone diet soda and I don't chew gum. (two product that often contain Aspertame) I take a daily vitamin and have for years. I suppose I could up the B6 and Magnesium if that is thought to help. (I'll probably consult with a doctor of course first)

I've never heard of MCT oils until now. I'll start researching that today. I'll also do a search on the forum for Robins posts.
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Old 08-04-2012, 02:59 PM
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Seizures are simply abnormal electrical activity in the brain.
They typically follow the same or similar pathways each time.
The more the pathways are activated, the more likely they are to be activated again. The more seizures you have, the more prone you are to having more... that's why epilepsy is considered a progressive disease.

It's the same process that is used for learning, where you do something over and over again and eventually over time it's wired into your brain as something that's almost natural and comes easily. That's why it's so important to get them under control. If you don't, your brain, put simply, wires itself to seize.

Doctors typically perscribe medication to stop them first to derail this process, which is their initial focus for any seizure patient. After they're controlled, then the underlying cause can be focused on.

It's a personal choice of course, because taking medication has risks, and not taking medication has risks. Weigh the pros and cons of each, and make the decision for yourself. It's your life, so it's your decision.
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Old 08-04-2012, 03:51 PM
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What kind of seizures have you had? And is this new for you? Any other history? Sometimes being over tired or too stressed can bring on seizures ... maybe you have these issues owning your own business? And you might be surprised to know that it only takes a little bit of a seizure trigger to bring them on. Like one bad meal. Not eating the bad thing a lot over time. Just FYI.

As far as Keppra, it works very well for lots of people. It worked horribly for me, however, knowing the side effects ahead of time made it possible for me to recognize right away what I was experiencing was not reality, it was a side effect and thus I was able to get off the medicine immediately. These drugs are major drugs. They can't really be started and stopped without supper vision.

As far as generics, well, personally, I hate generics, lol, but they are much much cheaper. For instance, I got generic Keppra for $47 a month and real Keppra was $459 a month. There are some members who can only take the real product and others don't have any issues with generics.

The side effects are usually limited to a few people, not the majority.

Good luck with everything. I wish finding info about epilepsy and its treatments were easier, but I find it is difficult and you should do as much research as possible. I have no insurance either, so I get that.

Honestly, relaxation techniques, plenty of rest (mentally and physically), recognizing triggers (my personal triggers are heat, tired, stress, too much on my schedule) and avoiding them is key, good nutrition, hydration, no caffeine (i drink a half cup a day because it doesn't affect me but it does some people), no alcohol (can be a big trigger), and supplements is helping me much more than the keppra ever did. But.... I do not suffer from tonic clonics. I get simple and maybe complex partials, so I'm not sure if these techniques will help or work for someone with tonic clonics. I've heard they can.
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Old 08-04-2012, 06:06 PM
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Quote :
What kind of seizures have you had? And is this new for you? Any other history? Sometimes being over tired or too stressed can bring on seizures ... maybe you have these issues owning your own business? And you might be surprised to know that it only takes a little bit of a seizure trigger to bring them on. Like one bad meal. Not eating the bad thing a lot over time. Just FYI.
My first two seizures where "Full Complex" seizures. This was four weeks ago. We're not 100% sure if I had a seizure followed by a head injury (I cut my head open) or if I passed out from a high temp fever (104) and the head injury caused the seizures. At this point it's a guess.

This is all very new to me and slightly overwhelming. There is a lot of information to try and take in. Early this week I felt ill, dizzy and saw stars. I laid on the floor and fell asleep for a few minutes. My mother is a nurse and said I may have had a seizure. I don't know if I did because nobody was home. The last "confirmed" seizure was when I fell asleep. I went to sleep early and my ex wife was with the kids in the living room. She heard noise in the room and briefly witnessed me having a seizure in my sleep. I woke up and rushed to the kitchen (I remember that) Though I have no idea why I felt the need to go to the kitchen. I just felt I had to go there. It was mostly my head and mouth that where moving. I don't know what kind of seizure it was.

Quote :
As far as Keppra, it works very well for lots of people. It worked horribly for me, however, knowing the side effects ahead of time made it possible for me to recognize right away what I was experiencing was not reality, it was a side effect and thus I was able to get off the medicine immediately. These drugs are major drugs. They can't really be started and stopped without supper vision.

As far as generics, well, personally, I hate generics, lol, but they are much much cheaper. For instance, I got generic Keppra for $47 a month and real Keppra was $459 a month. There are some members who can only take the real product and others don't have any issues with generics.
Yikes! $500 a month is expensive. I suppose if they decide I need medication I'll start with the generic and see how it goes. The medicine almost seems worse than the seizures. At the same time I don't want to go down around the kids or worse injure myself or them. I try to be as proactive as I possibly can.

Quote :
Good luck with everything. I wish finding info about epilepsy and its treatments were easier, but I find it is difficult and you should do as much research as possible. I have no insurance either, so I get that.

Honestly, relaxation techniques, plenty of rest (mentally and physically), recognizing triggers (my personal triggers are heat, tired, stress, too much on my schedule) and avoiding them is key, good nutrition, hydration, no caffeine (i drink a half cup a day because it doesn't affect me but it does some people), no alcohol (can be a big trigger), and supplements is helping me much more than the keppra ever did. But.... I do not suffer from tonic clonics. I get simple and maybe complex partials, so I'm not sure if these techniques will help or work for someone with tonic clonics. I've heard they can.
Thank you! And yes! Heat and Caffeine. I'm glad to hear you say that because I thought I was going crazy. I've drank tea as far back as I can remember. But as soon as I have any type of Caffeine now I start to feel "odd". Heat really bring things on also. In both cases I had coffee and was warm. Before I laid down I was working in the garage, when in the living room I was cleaning the house. Both times I had coffee because I ran out of tea. I didn't realize at first but after the second time wondered if it was a trigger. It's never been an issue before..

Again I really appreciate everyone's input, I can't thank you all enough for your encouraging posts.
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Old 08-04-2012, 07:48 PM
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Have you seen a regular doctor for this yet? I wonder about blood pressure? Anyway. Sucks not having insurance. Glad your mom is a nurse and can help guide you.
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Old 08-04-2012, 09:31 PM
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I'm on lisinopril for high blood pressure. (Runs in the family) I have a cuff I use to take my pressure at home. I usually take it every few days or whenever I see it laying on my desk. I'm usually around 120/80 ish give or take.

A few times I felt dizzy or off I thought perhaps my BP was low for some reason. I took it and each time my BP was fine. Riding between 118-122/78-80. (resting)
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Old 08-05-2012, 12:13 AM
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Good . How about blood sugar?
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Old 08-05-2012, 12:19 AM
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Blood sugar I have no idea. I have no way to test.

What I can say is that when I went to the hospital after my first two complex seizures they said my sugar levels where fine. Blood work also came back clean. (As well as my MRI and Spinal Tap) I have copies and everything looked good other than two things but it didn't seem to be of an any important to the doctors.
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Old 08-05-2012, 01:19 AM
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Were the two things any minerals or vitamin deficiencies ... because that could be huge
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Old 08-05-2012, 01:21 AM
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I mean j do suspect your stress level but I'm wondering if there was something else coupled with the stress that brought this on. Would be nice if you could avoid these somehow. So many things to worry about huh. How old are your kids?
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Old 08-05-2012, 01:31 AM
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This is what was highlighted

Neutrophil 84.5 (Normal Range 54-65) Keep in mind I was sick with Strep at the time.
Monocyte: 9.7% (Normal 3.0-7.0)
Lymphocytes: 5.8% (Normal 25-33)

Sodium Blood: 133 (Normal 136-144)
Chlorise Blood: 99 (Normal 101-111)
OSMOLALITY-CLAC: 268 (Normal 275-295)
Eosinophil%: 0.0 (Normal 1.0-3.0)

I had blood work done a few days later after going back in for a blood patch. Many of the above had stabilized. With the exception of:

Lymphocytes: 22.4% (Normal 25-33)
Monocyte: 12.7% (Normal 3.0-7.0)

There where a couple of other but only off by about a point or so.
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Old 08-05-2012, 01:34 AM
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Originally Posted by julie wishes View Post:
I mean j do suspect your stress level but I'm wondering if there was something else coupled with the stress that brought this on. Would be nice if you could avoid these somehow. So many things to worry about huh. How old are your kids?
I have a 2 1/2 year old and an 8 month old Both my reasons for moving forward. They are with me the majority of the time with the exception of the last couple weeks.
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Old 08-05-2012, 01:46 AM
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I take the generic for Keppra, Levetiractam & although less expensive, it still is and I find it differs depending on the pharmacy. Look up prescription help plans or whatever, there are things out there that can help with cost of medications.

Walgreens have a prescription saving plan too. My prescriptions are covered by my insurance so I don't have to worry but there is help. I haven't had any side effects of Keppra. I take 1,500 a day and haven't had any problems, everyone is different & those that suffer side effects may be having medication interactions with other meds, don't know but if you do need meds, your doctor can work with you to find what works best.

I also take Lisinopril. Commercial is on for a prescription help plan & this is the number. 1-800- 958-3491 Advertisement states they have given numerous free medications. I've never called it but might not hurt.
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Old 08-05-2012, 01:55 AM
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Originally Posted by pianoguy View Post:
Hi Everyone,

My question is, should they decide to place me on medication is there anything I should question? It would seem Keppera is prescribe quite often but I've read horror stories online. Mood swings, anger, depression etc.

Is it essentially trial and error or is there a medication most members here feel more comfortable using? Also, I'll mostly likely choose generic if it's an option, anything I should be concerned about? (fillers)

Thanks as always.
Hi again! I take generic keppra and haven't had problems with it. My CA neurologist upped my keppra and wouldn't listen to my concerns so I politely asked for a referral to the epilepsy center at UCSD. I loved my epileptologist there and all of their staff were amazing! My epileptologist and I played around with the dosage and times taken during the day until I got to a comfortable place. 500mg when I get up, 500mg mid day and 750mg at night. I also found I do better if I take it pre-meal or with a light snack. In the beginning I was moody and irritable but I was also dealing medical testing, living in CA, (I'm an east coast girl) and trying to graduate from college while dealing with all of that seizure activity. So it probably wasn't all because of the Keppra. My body has adjusted now and my husband says I'm much more pleasant!

But yes, it is trial and error as everyone is very different when it comes to how they react to the meds. And a heads up, the process can be terribly frustrating.

I used to work fulltime, ran a business on the side and was going to college. I lived on coffee and rarely slept. I don't drink soda or alcohol, don't eat fast food or much meat and prefer fruits, veg, rice.

So the biggest changes for me involved slowing down, sleeping more, reducing stress, no more 16 hr computer work load schedules, no more coffee!! etc, etc. I have to keep the house at around 67 degrees as heat is a factor - this recent heat wave about killed me with seizures and migraines. (One of the main reasons I took a break from cwe the past week or so).

I also learned to live on a schedule suited for my medical needs. For example, we're taught to get up in the morning, eat at set times, work certain hrs, sleep at certain times. I have an autoimmune disease, they ruled out premature ovarian failure last week but will be testing for hypothyroid if I have a good week next week and can get to the drs office. But outside of that no heart, blood pressure, diabetic problems. Butttt as I tend to put off eating my blood sugar tends to get low and i seize. So I have to make sure I keep quick and easy to grab snacks handy. Fruits, granola, bagels, crackers, hard boiled eggs! I hate cooking for one! I still find it hard to sleep for 8 hrs straight so I listen to my body and take a nap or I sleep for two short sessions instead of one long one.

My point, it does seem overwhelming at first. There's a ton of information to sort thru and process. And on top of it epilepsy is different for everyone so you have to play around with your lifestyle until you find a comfortable place.

I definitely encourage you to utilize the resources and people here, it makes the learning curve so much more tolerable.
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Old 08-05-2012, 01:58 AM
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Originally Posted by pianoguy View Post:
This is what was highlighted

Neutrophil 84.5 (Normal Range 54-65) Keep in mind I was sick with Strep at the time.
An illness can make you more vulnerable to seizure activity. At least it does me.
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Old 08-05-2012, 02:28 AM
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Thanks the info here and on the entire site has been very helpful. I honestly didn't know much about epilepsy other than what I saw on Television. I also ignorantly assumed it primary effected those with special needs. I shouldn't have been, but I was shocked to see how many every day successful, regular, Moms, Dads and otherwise suffer from this condition.

I do tend to eat well though it can be sporadic. Especially with the business, 2 small children and the recent downturn in the economy stress has been high. I tend to overwork but as you know, at one point running your own business, it tends to be the nature of the beast. I've done my best to slow down and naps in the day, which I try to time with my children, seem to help a little. I do feel tired all..the..time. The only exception was after my latest episode in which I slept 13 hours.

I have a couple of questions

1. From what I read online Keppra should be taken secondary to other Epileptic drugs though it appears some take it on it's own?

2. When many of you started having epilepsy did you start also suffering from headaches? I have headaches that come and go almost every day. I never suffered from headaches prior to this. It was extremely rare when I did. I have a new found sympathy for those who suffer from migraines. It's horrible sometimes.
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Old 08-05-2012, 02:35 AM
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Originally Posted by pianoguy View Post:
1. From what I read online Keppra should be taken secondary to other Epileptic drugs though it appears some take it on it's own?
It depends on the type of seizure, and the patient. Each case is different, so it depends on the patients needs really... It is my primary anti-convulsant, though I do take Lyrica as well which is also for seizures, but I take it for my fibromyalgia. I also take a B vitamin supplement to help alleviate any side effects I have, and to counteract the B vitamin defeciency that sometimes comes with Keppra. I seem to have become defecient in B vitamins since I started it, so it's helped me a lot. That's my personal experience though.

Quote :
2. When many of you started having epilepsy did you start also suffering from headaches? I have headaches that come and go almost every day. I never suffered from headaches prior to this. It was extremely rare when I did. I have a new found sympathy for those who suffer from migraines. It's horrible sometimes.
I've always had migraines... First one I can remember I was a little kid. Probably 4 or 5 years old. Fibro showed up at 13, and seizures started at 17.

The first two run in my family on both sides, but I'm the first person I'm aware of in my family to have any sort of seizure symptoms.
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Old 08-05-2012, 02:43 AM
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I too, thought Epilepsy was more in the general special need population. Until my 11 year old daughter had a seizure in her sleep n June. Getting answers to why can be very frustrating because it is such a complicated condition. We started on Keppra towards the end of June and havent noticed much change. Hoping she changes or adds to her meds, I like to see my little girl have a seizure free sleep. I once read on here "Seizures beget seizures" so they more you have the more likely you will keep on having because your brain gets used to them. Forgive me if Im wrong, Im fairly new at this. But my point is, I think the earlier you can ward off seizures the better and meds seem to be the method most used. Good luck to you. I know how exhausting it is to search for answers and support. My eyes are always bloodshot from the late night use of Google, haha!
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