Hi

[Inaara]

I wandered across this place a few months ago when my neurologist first casually mentioned "and if you are having seizures, this may help with that too" as she was explaining how to level up on topamax to the dose she wanted me on for migraines and telling me all the tests she was going to be running. (Because even though my brother and cousin have epilepsy, I really don't know a whole lot about seizures and what dealing with them and living with them means, and have found a lot of useful info here, so thanks...)

VA medicine is kind of like an exercise in frustration. The docs do not listen to you and assume they know what you are going to say. So finally, I got mad and wrote everything that's been going on for the past few years down, walked into my other doc's office yesterday for an appointment (I have 4 doctors over there and none of them talk to each other or to me) and handed him a neatly typed document and said "Do not speak one word to me until you have read this completely and read my chart."

So he read it...and holy wow, he made some notes, looked at my chart, made little co-signed notes to all my other doctors (meaning they have to sign the note to tell him they read the note and then he signs to acknowledge that he knows they have read the note he sent), looked at me and said, "You have temporal lobe epilepsy that was caused by a traumatic brain injury. Have any of the other doctors mentioned this?" I told him none of the other doctors let me get past the fact that I was having migraines and memory problems to the rest of what's been going on for the past few years.

Anyway...I finally have an answer, which is good. I also have an argument on my hands because this guy is talking depakote (I told him to go <bleep> himself because the last time they put me on that stuff I gained almost a hundred pounds and frankly, I'd rather deal with seizures than go through that and the other side effects again). And next week I get to go find out how bad the brain injury that caused all this mess is (is "he/she needed killin" still a valid defense in some parts of the world? Because I'm really feeling right now like the idiot girl that got behind the wheel of an SUV with a .21 BAC and drove the wrong way on the freeway and plowed into me, nearly killing me and causing all this mess REALLY needs killin') and whether or not the doctors think I should get to keep living by myself or if I should have to move across town and go live next door to my little brother and his wife so there's someone to look after me. I'm a big girl; I really don't think that at my age, I need a babysitter, so I'm a bit annoyed by all of this. *frown*

 

[dfwtexas]

I can certainly understand and relate to your frustration. There are other seizures meds available, did he discuss other meds as a option for you? I am on Keppra and have been having good experience with it. Like our seizures, our reactions and side effects can vary from person to person.
Welcome to our group
jenn

 

[Rae1889]

Welcome!
There are lots of places in here where you can pick up information (as you probably know from lurking ) so take a poke around. there is the padded room when you need to vent and scream and let it all out, and have someone help you reason throught the scenarios and share experiance.

there is the lemonade stand where you can go to get some cheering up about having E. anything that you may feel sad about can be posted here.

there is the kitchen where you can ask anything about E that you like.

or the lounge where you just want to have some "inside E" humour about the most random things.

If you need anything at all, dont hestitate to ask. PM bernard (the host) or any one of teh moderators, all will be happy to assist you.

Bernard made a wonderful home here, and its nice that you decided to ring the doorbell and wipe your feet on the mat. Bernard made this site out of love for his wife stacey and as a way to help others learn and cope.

 

[BuckeyeFan]

:cheers:

Welcome Inaara, come on in and make yourself at home.

We can all relate to your frustration. It is something most of have to deal with to some extent. I am real glad to hear that you are fighting for yourself and seeking answers versus just blind acceptance. The good news is now you at least know what you are fighting.

 

[Nakamova]

Hi Inaara, welcome to CWE!

Congrats for being proactive with your doctor(s). I think many of us here at CWE have experienced frustration with the medical establishment on top of the frustrations with the seizures or with the meds. I would definitely ask your doctor about medications other than Depakote.

Some folks here have had success with special diets and/or neurofeedback so you may want to consider those options. Keeping a seizure journal can helps as well. Feel free to ask questions, share experiences, vent, chat, etc.

Best,
Nakamova

 

[occb]

I like your style. I may borrow it for my partner's docs if it comes to it -- but I'll be sure to give you full credit

Welcome to the forum feisty Inaara!

 

[Inaara]

Hi Inaara, welcome to CWE!

Congrats for being proactive with your doctor(s). I think many of us here at CWE have experienced frustration with the medical establishment on top of the frustrations with the seizures or with the meds. I would definitely ask your doctor about medications other than Depakote.

Some folks here have had success with special diets and/or neurofeedback so you may want to consider those options. Keeping a seizure journal can helps as well. Feel free to ask questions, share experiences, vent, chat, etc.

Best,
Nakamova

hehe, it was either me telling the doc that or my little brother dealing with the doc - and my little brother's about to lose his temper with those people right about now.

THanks for the welcome..and what is a seizure journal?

 

[epileric]

Welcome Inaara

A seizure journal is when you keep track of your seizures (I use an excel spreadsheet). Also keep track of when you take your meds, go to sleep, wake up, eat (as well as what you eat), move your bowels and keep notes on how you are emotionally or if anything unusual happens re. your seizures.

I know Meetz has a great list of thing to keep track of, she should be by soon.

 

[Meetz1064]

Hi, hello

and I heard my name mentioned somewhere...........

I'm Meetz. I think Epileric introduced me. Topamax is ONE of my AED friends also. (that's a sarcastic joke BTW--i take 4 AED meds). I, too, use it for migraine control, although, I also gain some seizure control as well.

Epileric is absolutely right about the E journal. I am a HUGE proponent of them. They can accomplish MANY things--including helping you to find triggers.
I am going to post a list of things to put into a journal so that you can see what I mean.

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

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


ALSO IMPORTANT TO NOTE: Some people find that one of their triggers is their bowel, and keeping track of that might be a good thing as well.

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


Have you ever considered getting hold of a member by the name of batman? He is also a VA patient. For the last 20+ years if my memory serves me correctly.

Also, something else to consider. Nutrition DOES play an important part in the daily life of an E patient--many of us are deficient in vitamins and minerals. For example, I am, as are a number of E patients here, deficient in magnesium. I take it on a regular basis. Benefits: migraine relief for one, and muscle cramps for another. B complex vitamins are great for brain health.

Something specific to know though: there are diets that can help with seizure control You don't need them to help control WEIGHT.....just seizure control. GARD, LGIT, MAD, those are a few of them. I started out on the GARD, and then found out I was a full-fledged celiac patient. The difference between the 2 isn't much but........my control is MUCH better now.

Please take the time to consider the information for the E journal. And PM me if you have any questions that you don't want to ask out here. Feel free to ask whatever you what, I will happily answer it.

Take care. I'm off to deal with morning detention now. YIPPEE!!

Meetz
:rock:

 

[skillefer]

Hi Inaara! Welcome to CWE. I thought my ears were burning. Sure enough, Nakamova mentioned me. There are other drugs beside Depakote. So your doc should be able to help you find one that fits. As Epileric and Nakamova said, keep a journal. Also, you need to make sure that your getting at least 7 hours of sleep a night, and cutting way back on caffeine and other stimulants. This also means herbal supplements. So if you use herbal supplements, you might want to check and see exactly what you are using and if it's a stimulant. For medications, you'll also want to check with your doc or pharmacist to make sure that the med your prescribed won't be effected by anything you eat or vitamins. for example...I take Dilantin. Dilantin can screw up vit. D absorption. So I was taking a vit D supplement and Calcium combo. The problem, Calcium can screw up dilatin absorption. Ended up having to quit taking the calcium supplement because I was having problems absorbing enough dilantin for it to be effective. After I stopped the calcium, my dilantin levels went to toxic levels, and my meds had to be adjusted again. so make sure your doc and pharmacist know about any supplements you take.

 

[celesteam]

So stealing your method!

Wow! Now that is impressive, just pass them the log. I'm doing it! Next time I go in, I'll try that. Maybe it would help them see the whole picture better. How awful it is to have the neurologist give us the blank stare? So... I'm absolutely stealing your tremendous method. And welcome to the site! Hope you find it as helpful as I have!

 

[Inaara]

Wow! Now that is impressive, just pass them the log. I'm doing it! Next time I go in, I'll try that.

I just recommend that if you do try it, you try not to throw it on the doctor's desk with an angry glare like I did. It might have worked (that time), but my temper isn't usually known for producing useful results. I just got lucky this time. *snicker* Tact has never really been a strong suit of mine. :roflmao: