Hello

[Bennyb]

Hello,

My name is Ben. I am 29 years old. I live in Sydney Australia. I have recently been diagnosed with Partial Epilepsy in March this year. I am still coming to terms with it and having a pretty hard time of it. There is no history of it in my family and I have no prior history accept for a grand mal seizure when I was in my early teens.

I am a police officer and have been for about 9 years now. I am currently on restricted duties, lost my licence, my firearm and can no longer do operational duties.

I am currently on Keppra and although the severity of my seizures has decreased I am still having at least five a week. Yesterday I had 3, it was a pretty hard day.

I have found out today that I will probably not go back to full duties within the Police and I am trying to come to terms with that. I love the police and I love the job I do. I am going to be sad without it.

I have a fantastic wife who is proving me so much valued support. It's putting a strain our our marriage but we are slowly getting there.

I am not sure what I want from this site.

Well I guess this is me.

 

[Meetz1064]

Hi Ben

It's very nice to meet you.

I'm sorry to hear about the diagnosis....I'm sure it's hard on you, especially considering your line of work. E DOES show up at any age, so it's not surprising...sometimes it even shows up at age 70.

Please feel free to check out the entire site. There is a LOT of good information here. And feel free to ask whatever questions you want. We will answer whatever we can, and direct you in the right direction to get answers to the ones that we can't.

There is a Padded Room here too, should you feel the need to vent. Mr B, our host, has built us an AWESOME home here, so feel free to kick up your feet and check things out. Hopefully someone will be around with some decent coffee as I keep burning mine....BAH. I keep falling asleep. LOLOL.:roflmao::roflmao:

Take care.

Meetz
:rock:

 

[epileric]

Welcome Ben

I"m the only one in my family with E. too (born with it). I guess it's just one of the things that keeps me unique- at least as far as the family is concerned.

What kind of seizures do you have? Mine are partials & I used to average about 5 a week but in the last couple weeks I've had at least one a day. It does get to be a bit much I know.

The people here are extremely supportive & I think the info here is the most informative that I've found yet. Make yourself at home & just explore the site. You'll probably find something interesting.

 

[Bennyb]

Hi, thanks for the welcome. I am hoping to learn a lot from this site and use it to assist me in coming to terms with everything that is going on. I guess it will also be good to associate with people in similar situations to mine.

Epileric, I have partial and at the moment I'm all over the place with them, they come and go, i can be a week free then have one a day for the next week.

 

[skillefer]

Hi Benny! Welcome to CWE. We have a couple of members from Australia. I'm sure they'll be chiming in to say hi. Glad to hear that you have a supportive wife. Yes, epilepsy can be hard on marriages...just remember to be honest with each other and to keep the lines of communication open. If you can, you should try to have your wife go with you to your neuro appts. Be patient with keppra. It's one of the meds that they have to slowly increase the dosage on. so although you may be seizing now, it might actually work for you at a higher dose a year from now. Also, one of the issues some people have with keppra is that it can make you more moody or irritable. If you think that may be happening to you, or your wife sees it, you may want to try taking a vitamin B6 supplement. lots of the people on keppra find that it helps.

Welcome to CWE. Feel free to ask questions, chime in, or just vent in the padded room when needed. ( We all need to at some point in time. ) Also, check out the library here. It has some great info on meds, diet, alternative therapies, as well as basic info on epilepsy. Feel free to invite the wife to join in too. We have lots of people here that are spouses and parents, as well as those of us who are patients.

I don't know if you're already doing it...but you might want to keep a journal. It'll help your doc and you figure out what your seizure triggers are, and figure out the best dosage for you. If you haven't , here 's what you need to be keeping track of:

1. food and drink (what, when, and how much)
2. sleep ( how many hours each night)
3. stress (physical as well as emotional...and remember being sick with the flu or cold counts as physical stress...and what you're doing to deal with it)
4. any OTC meds or supplements (what, when, and how much you take)
5. any alcohol or cigarettes (again, what, when and how much)
6. odd spells (odd feelings/odors/tastes/sounds/sights, migraines, and how long they last)
7. seizures (when, how long it lasts, where you are when it hits, and what you were doing prior)

You'll be looking for info to see if maybe the seizures are being triggered by certain things in your diet or lifestyle. In the meantime, to help your meds have the best chance at working...and minimizing your seizures, here's what I would suggest you do:

1. eat 6 small healthy meals a day (by small= it better fit on a dessert or sald plate. Healthy= no junk food, fast food, and if you have a carb, you have to have a protein.) this is to make sure that your seizures aren't being triggered by fluctuations in your blood sugar levels..because yes, that can trigger seizures.

2. Get 7-7.5 hours sleep each night MINIMUM. (lack of sleep is a common trigger) ( And you might want to ask for a sleep study to see if you have sleep apnea. A hgher percentage of people with epilepsy have sleep disorders. If they treat the sleep disorder, they tend to see a reduction in the number of seizures, because lacking good sleep lowers our seizure threshold.)

3. Develop healthy ways to deal with stress. (exercise, walking, painting, journaling, art, meditiation, prayer...it's all good)
Stress is a major trigger for many of us.

4. quit taking OTC meds for colds and flus (especially antihistamines and decongestants...they are stimulants and stimulants can trigger seizures)

5. Quit any caffeine (no more sodas, teas, coffee, mate, energy drinks, etc....these things have caffeine, and caffeine is a stimulant that can trigger seizures)

6. Either eliminate alcohol, or severly limit it to about 1 drink a week (Alcohol can screw up your meds)

7. smoking puts stress on the body...so try to quit if you do smoke or cut back.

8. quit ANY artificial sweetener. They've almost ALL been shown to trigger seizures.

The hardest thing on this list is usually the diet. Just remember to shop the outer edges of the grocery store. Here in the US, grocery stores are usually laid out so that meat, dairy, fruits and veggies, and breads are along the outer walls. Everything in the aisles tends to be loaded with preservatives, colorings, and chemicals. Those are the things you want to avoid.

Make sure to check out the info in the library here. And feel free to ask any questions. Oh...and as my neuro told me, the more you weigh, the higher dose of meds you'll need...so make sure that you keep an eye on your weight. Hope this helps!

 

[Bennyb]

Thanks skillefer, just that bit of info you have left me is fantastic. I'm trying out the B6 and will see how that goes. I'm very happy to be here thanks.