Hello you all, thanks for the site.

[C0urt]

Sitting around in the middle of the night, either from an odd sleep schedule, or the insomnia. It is really easy to feel lonely. My jaw is out of alignment from my last major seizure because I chipped two teeth. I can't bite my nails, and cereal is a challenge. It is amazing, that is almost worse than the time I woke from a seizure on a subway platform only to realize someone had stolen my cell phone.

Well my name is Courtland. I developed epilepsy as a result from something else about two years ago. The sort easy answer is I had viral encephalitis caused by a tick bite that I would have been immune to had I grown up in that part of the world. But in all honesty at least 6 doctors later, no one really knows.

I spent about a month in three hospitals in a comatose state between oklahoma and alabama. I woke up with epilepsy, anti-retrograde amnesia, and my left ear rings. Most of my other issues are a side effects from the different medicines I have been on.

It is depressing at time, but I realize most of the depression is chemical, but on the same note, most of the people I talk to tell me it is natural to depressed with some of my issues.

Was a bike tech. lost my job, got another job doing the same thing in a different place, the owner eventually said I was a medical risk to myself and others and fired me. Most of the things I am qualified to do are affected by the epilepsy. Was a motorcycle tech, you have to have a dl to do that. Was a lifeguard, that one should be obvious.

I have seizures fairly often, a few months ago was up to several a day, now three days in between them is a good thing. I am taking 600mg of carbamazepine . I shouldn't take topamax because of the personality change. lamictal ruins my short term memory. and dilantin I should avoid at all cost. It makes me hallucinate and makes me paranoid. The first time I was in a hospital gown with the back open and had escaped from the hospital because I thought they were after me.

I keep reminding myself. It could be worse.

 

[josieb]

Courtland,

I wanted to welcome you and let you know that everyone here understands the frustration you are going through. Like you noted, I have always tried to use the philosophy that there is someone out there who is worse than me. I wish you well!
Sincerely,
Josie

 

[C0urt]

Thank you a lot dear


I try not to think that someone out there is worse.
but I like to think I could be worse.

I do hate having to deal with my dad asking with me and "why me" vs asking "why not."
It is hard to tell him I don't ask either. I have other things to deal with.

 

[Cinnabar]

Welcome, Courtland. I think I've met my match. I thought I was the only one clever enough to have escaped a hospital! Gown and all, too. I was also diagnosed with Epilepsy two years ago. Temporal Lobe Epilepsy. And I also have depression and anxiety which is chemical and, yes, life circumstances will "contribute" to these states. About the side effects of your medications. It's tricky. I've been on several medications. This one, that one, until I found the right medication cocktail. It takes patience, time so there's hope. I have a friend here who went through allot of stigmation because of her Epilepsy. A long trial for her and she just finally landed a job. A job for you can be had. You just might have to think about going into a different field. And what a positive attitude you have reminding yourself that it could be worse. This is something we all have to remind ourselves of. You've come to the right place. This is a very easy going, caring site. And you'll find tons of information here. The Kitchen and The Library are good places to go when needing to get information about Epilepsy. If you're a musician of just a fan of music there's Speber's Auditorium. If you just need to kick back and enjoy a laugh there's The Lemonade Stand. And if you just need to rant and rage there's The Padded Room (get a kick out of that name). So welcome to our great community, Courtland.

 

[BuckeyeFan]

:cheers:

Welcome to CWE.

Come on in and look around. You will find a lot of info here, but better yet, you will find folks that understand and are willing to listen.

:cheers:

 

[Cint]

Hi Courtland and Welcome,

I'm sorry to hear of your ordeal, but glad you found CWE. Dealing with seizures is a pain but the depression on top can be unbearable at times. And with the attitude and knowing it could be worse, you will make it through, but if you need vent and/or ask questions, we will be here.

 

[Nakamova]

Howdy Courtland and welcome!

I do the same thing with "it could be worse". One of my cousins has Parkinsons. A friend has MS. It gives me some perspective. Of course at times "perspective" doesn't always do the trick.

There are a few more AED meds out there that you could try -- though I know how unpleasant the medication merry-go-round can be. Do you have the option or inclination to try neurofeedback? It might help reduce the number of your seizures. You can search on the site for more info about that as well as about special diets that have helped people too.

Best,
Nakamova

 

[seizingbeauty]

Welcome Courtland,
Glad you found your way here! I understand how frustrating it is that you can't do what you love/want. I got stuck with an office job, good people but still not what I wanted to do. I wanted to be an electrician but electrcity and epilepsy don't mix. Have fun here, everyone else does!

 

[RobinN]

Welcome to CWE, Courtland

I have heard that those little buggers could be nasty. Sorry to hear of your ordeal.
There are some families that are also dealing with viral neuro issues and they seem to have found some alternative therapies to help. Have you dug around much for sites other than the ones that encourage medication?

Have you ever brainstormed about an internet site that might be lucrative, but also would be in an area that you obviously are passionate about?

I hope you find ways to increase those seizure free days.

 

[C0urt]

I have tried a bunch of different meds, some just don't work, and some the damage do more harm than good.

I used to have a high carb high protein diet (one of those bicycling racing types). I found changing that to fewer carbs and more calories and more fats helped me out a lot but no more 100 mile bike rides, and the change in diet my weight is doing weird things.

When I try to work out, it seems to affect my seizures, so I have given that up till I can talk to a doc. There are enough stories about me seizing while running and then walking home post tictal covered in dirt a bloody face planting, knocking on the wrong doors because all the houses are the same color.

 

[Nakamova]

Electrolyte imbalance plus dehydration can play a role in causing seizures if you have a lower seizure threshold. That may be what's happening when you exercise.

 

[RobinN]

How about no refined carbs or sugars? Perhaps even eliminating grains for a trial.
No additives, no alcohol... keep the weight steady, and excercise at home for a while.

Just a suggestion, I am not a medical doctor. It is from research and learning from others dealing with neurological issues.

 

[C0urt]

How about no refined carbs or sugars? Perhaps even eliminating grains for a trial.
No additives, no alcohol... keep the weight steady, and excercise at home for a while.

Just a suggestion, I am not a medical doctor. It is from research and learning from others dealing with neurological issues.

No drugs no drinking.

oatmeal in the morning usually. mostly veggies and stuff that's cooked at home. I think fast food does make it worse. I quit drinking sodas almost, I dont think the caffiene helps any. I will look into the other stuff, thanks

 

[Nakamova]

A lot of fast food has MSG in it (KFC is the worst offender!) which can cause migraines and seizures. So best to avoid it...

 

[Loudmouth]

Hi Courtland, and welcome here. Before I was diagnosed with Epilepsy, I was working as an on-site architect, but here in the UK, if you have had even one seizure after the age of 5, you are NEVER allowed on a building site again. Bang went my Job and 5 yrs of training. I took shop jobs after that until 2 yrs ago when my seizures got even worse and my Neuro signed me as not able to work. It's driving me mad not being able to work, so I casn understand the frustration there.

 

[Meetz1064]

Hey there

Court! I just wanted to stop in and say hi, how ya doin?

I'm sure things are not exactly where you want them to be right about now, and I'm sorry for that, but your attitude of other people having it worse is also the one I take--because they do. I mean, we can still see, hear, walk, talk, write with our hands and more. So you've definitely got the right attitude.

I think you REALLY need to keep an E journal. It will help you try to find a pattern to your seizures, and any possible triggers to them. Also, DO seriously consider one of the diets that we talk about here on the site to AID IN THE CONTROL of the seizures NOT to lose weight with. For a long time, I used the GARD diet, with a lot of success, until I was diagnosed as a celiac patient, and am now on an even more restrictive diet.

Laurie gave you some really good advice about checking out the Library and the Kitchen, but I am going to post what should be put into the E journal, so that you have it. If you have any questions, feel free to ask.

*************************

1. Sleep. List how much & when.

2. Eating. List how much, when & what. It's possible to have seizures caused by allergies to food.

3. TV/computer/video games. Yup, they can affect you if you're photosensitive, so list when, what, and HOW LONG.

4. Menses (for women). Start tracking your cycles. CATAMENIAL epilepsy does exist, sometimes it's tied to ovulation, sometimes its right at the TOM. Also, LADIES, DO get a thorough check of ALL your hormones done—female, thyroid, and any others. Believe it or not, they do factor in on seizures.

5. Stress List when it occurred, and what happened.

6. Exercise List what you did, when, and any reactions.

7. Seizures/auras. If you have either, DOCUMENT THEM. Auras--note what they're like--do you smell or taste something that others don't? Hear something? Seizures--how long, when, where, what happened. If you don't KNOW what happened, get eyewitness accounts when possible and DOCUMENT THEM. ****side note**** Auras ARE partial seizures!!!

8. Smoking and alcohol. Ditch them--both are neurotoxins for our brains.

9. Meds (of ANY kind). List the dosages, and when taken.


Responses to the Above List


1. You MUST get 7 to 7.5 hours of sleep as a MINIMUM, no ifs, ands or buts about it.

2. Eating--one of the other mods, Skillefer, (we call her Skilly), promotes eating 6 small meals a day, using a dessert plate, filling it with a carb and a protein. Good idea, I think. However, some people, like me are allergic to certain foods. You might want to look into various diets. Ketogenic, Modified Atkins, Low Glycemix Index, Gluten Free Casein Free (see www.dogtorj.com where the actual given name is GARD—it stands for Gut Absorption Recovery Diet).

3. Look into a glare screen for your computer or blue tinted polarized GLASSES (available by prescription from eye doctor). These can help cut down on seizures that are caused by photosensitive epilepsy.

4. GUYS--you may not have a cycle, but you DO have hormones. DO get your doc to do a full hormone screen, check thyroid, etc, just to make sure.

5. Use things like yoga, music, walking, whatever it is that you do to bust out your stress. Keep a separate journal to write in so that you can write out your feelings in--and keep it for your eyes only. Write it out by hand, two or three pages at a time. It helps A LOT. DO IT EVERY DAY.

6. REFLEX E can be caused by exercise, so DO track what you do. Keep in mind that you SHOULD NOT swim, bike, hike or bungee jump by yourself. Same goes for mountain climbing.

7, 8 & 9. 'Nuff said.

OK, the journal IS a pain in the arse. No doubt about that one. BUT it DOES help the doctors track things down.



Take care,

Meetz
:rock:

 

[C0urt]

I have been keeping track oof my seizures, what time and what caused for the passed 3 months, it just seemed like a good idea. And I thought it might help a doctor, I havent seen a patern yet.