I'm new here and need help understanding

[Billyboyboo]

Hi Everyone out there.
I am 29 years old, live in New York. When I was a child, I had these, what I call "Time out spaces" Time was confusing sometimes. I would just fall asleep it seemed, and wake up not knowing much. I would fall asleep anywhere, this was convulsions. I didn't know. At the age of 13, I spiked a fever of 106, then had a seizure.
I'm going to skip around until now...
I was put on Keppra 250mg two a day, Klonopin 2mg a day. My Neurologist was very nice and so is my PCP, they work together.
About 3 months ago prior to the Neuro. visit, I was seeing Auras around things, felt heavy minded, sensitive to light, very sensitive. I also have Anxiety, which does not help. My head would go back and I would just stair at things. The Auras come and go, sometimes I feel a rush up my back, especially in stores, a rush that says "Get out, you're going to seizure" and I see Auras.
I just need help as I am new to my Diagnosis of Partial Seizures.
Thanks, Billy.

 

[Nakamova]

Hi Billy --

Welcome to the forum! You can search for specific topics on the site or vent, chat, ask questions, etc.

It sounds like you may be especially sensitive to fluorescent light -- since your auras/partials are triggered when you are in stores. It's a good idea to keep a journal to record your seizures in, and also keep track of other things (like diet/metabolism, activity, stress, fatigue) that may be triggers.

Some folks on the site have had success using diet and neurofeedback to reduce or eliminate their seizures. You might want to talk to your docs about these options and also about adjusting your meds if you're continuing to have seizures now.

Best,
Nakamova

 

[epileric]

Welcome BBB

Your symptoms don't sound that uncommon amongst people with epilepsy. If your seizures are more common in stores is it possible that you're reacting to the fluorescent lighting?

If so maybe you should check out getting some tinted shades. I know people on this site seem to favour the blue tinted but there is an optometrist who prescribed the yellow tinted glasses here for someone whose seizures are triggered by the tube lighting & she says they work fantastically.

 

[Meetz1064]

Hi there

Billyboyboo. I like the screen name.

Well, from the sounds of it, you're on the right track. However, you might want to have your med levels checked to make sure that you've got enough in your blood to help control the seizures. From the sound of it, you don't.

Also, you might want to consider adding some alternative things to help yourself....be more proactive in your care. Neurofeedback, diet and meditation are good starts. There is plenty of information to be had in the forums, about diet. Check out the Library and the Kitchen....there's a LOT there. The Padded Room is great for venting, and trust me, we've all been there a time or two.

Also, another important thing is an E journal. This will help you to possibly identify your triggers so that you can either eliminate them, or control them.

Here's a list of suggestions that I give people to put into an E journal to help them. You don't have to follow all of them, but it WILL help, I promise.

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

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.


***************************
Replies To 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.

 

[RobinN]

Hey Billy... welcome
lots of helpful advice and support on this forum.
My daughter is one that is helped by making nutritional changes. She remains med free and her seizure threshold is is better over time.

 

[dfwtexas]

Welcome...this is a great place for information and support. I got diagnosed 1 1/2 year ago. I have both simple and partials. When I have simples, it signals...here it comes. As most of mine happen at work, it gives me time to hide in the bathroom. I am photosenstive too...store lights don't bother me (maybe because I am too broke to stay long LOL!) but the lights at work do.
keeping a journal is good to help you identify those thing that can trigger seizures for you.
I am on Keppra - 1000 mg twice a day. I have had it adjusted a few times since I started. overall, I am very pleased with the results.

 

[darcness]

Welcome Billy!

My wife takes Keppra too and so far it seems much better then Depakote that she was on before. The Depakote controlled her seizures, but the side effects were just too much. Since going from 1000mg to 500mg she's much more alert and getting out of the house more often. Hopefully once she's totally off the Depakote things will be even better.

When you first get diagnosed with E things are really hard. My wife was diagnosed in January and it's been a struggle for her and especially for me since then. The thing is, once you get over the initial shock and realize that there are ways to live a full life with E, then you start to move on and accept it. Most people can find control with medication or diet/nutrition changes or a combo of both.

Just learn as much as you can and keep posting here with any questions, concerns, or thoughts you may have. This is a wonderful and supportive place.

 

[Billyboyboo]

:woot:

Thanks everyone for your replies.
Can I post on other threads here and answer posts?

Billy.

 

[Meetz1064]

Lol

Yes, of course you can, Billy. This is an open forum, feel free to post in what ever part of it you like and that is applicable to you......

 

[Billyboyboo]

Yes, of course you can, Billy. This is an open forum, feel free to post in what ever part of it you like and that is applicable to you......

Thanks.

 

[Billyboyboo]

Thanks everyone
I changed the Klonopin to Valium, 2mg to 40mg of Valium, anyone else on Valium? Also Keppra was pushed up to 750mg a day, I don't take the Keppra like I should, but do take the Benzos. My Nervous system is very fragile, would taking the Keppra as I should help?
I don't know if I've had any more seizures since last time, as I don't remember.

Billy.

 

[Blondie47]

Hello

Glad to hear that you have a good relationship with your doctors. That is so important! I switched my daughter's doctor because of poor communication.

Be sure to report anything, weird feelings, aura's, seizures, or side effects to your doctor every week if needed! Write it all down so you are prepared.

This is a great community here-- lean on us!

 

[Billyboyboo]

Thank you

 

[dfwtexas]

With Keppra and other seizure meds, it is VERY important to take them as directly. Your brain needs a steady constant steam of you seizure meds to make them work. Not taking them, can bring them on just as taking pills after not taking them regularly. You are really in worse shape taking them here and there rather than not taking them at all.