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Old 10-02-2002, 06:20 AM   #1
Bleubird
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Post What would you ask......

Ok I'm going to a support group tomorrow (thursday) and they are going to have an epileptologist there hes going to be given all our questions and hes going answer them there w/ us. I'm gather questions from different sites to ask him..... what would you ask?? I'm going to post all the questions and answers on Friday.......


 
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Old 10-02-2002, 06:57 AM   #2
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Hi Bluebird,

Are you epileptic? if so I would ask about the meds you are on the side effects etc. I'd also ask about the different types of seizures and if you are epileptic find out more about the type of seizures you have for example Petit-mals Grand-mals etc.. just be totally open and anything that comes to mind ask about. Here's a great opportunity to find out more info about yourself or a loved one... or about the disorder in general. Before you go just sit and write down anything that comes to mind that has to do with epilepsy don't feel you will affend the more info the better for you or someone in need of support.


Koko
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Old 10-02-2002, 07:07 AM   #3
Bleubird
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Yes I am epileptic ...... for just a hair over 3 years now. I have my questions believe me .... and I have posted this question on another board and they came up with some I never thought of. Just thought maybe others had questions they would like to know ... the more the better!!! I want all I can possibly get from this thing. And on Friday when I post all the Q&A maybe it will help others with the results I get.

Thanks

 
Old 10-04-2002, 07:40 AM   #4
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Ok, I'm not pleased to say the man didn't answer not 1 of my questions but I wrote all that he did answer so maybe any of this can help..... I am hoping maybe he'll answer mine later since he did pocket my questions but threw everyone elses away x-(


Does your E. medication effect your balance?
Yes, Dilatin, Tegrotal, Depakote and Topamax (when combined with another med) can all effect your balance.


Is it true that Nutri-sweet can bring seizures on?
No, it was once thought this was true to to the chemicals in nutrisweet but it is false.


Some major triggers for E.
Not enough Sleep, Stress, Drugs, Alcohol (although a glass a wine shouldn't bother most ppl), Stopping your meds., diet pills, antihistemines (Benedrayl is a good one to bring seizures on) The Benedrayl shocked me cuz I take it to help me sleep....


How common is it to have strictly nocturneal seizures?
Is common to have just night time seizures if its Frontal Lope E. And about 50% of Temprol Lope will have just night seizueres.


Generalized E. is genetic. You have a 50% chance of passing this gene on to your child. But only 1/3 of these kids with the gene will actually have seizures. If it is the father that has E. he said that you only have a 2-3% chance of passing along E.


Photosensitive E. he said that the flashing lights have to be at a cetain pattern and htz to bring the seizure own. if the light is at 7-8 htz. It will bring a seizure on. There are light that have a CE stamped to them. This means they are certified to not bring on a seizure when they flash.


Can I take Estrogene replacements for my hot flashes?
Estrogene can increase seizure for many people (some it will stop it) He suggests taking a multi vitamin, and Vitamin E plus Folic Acid and water arobics instead. This will also reduce the chance of ostoprosis (which is a very common side effect for some E. meds mainly Dilatin)


If you experience Meomery loss then more than likely your medication dosage is too high. And you should talk to your doctor.


The top 2 medications that can help you control your seizures and weight loss is Topamax (although he doesn't like this drug for the side effects and even if you don't need the weight loss it can make you loss weight and become unhealthy) and Zongram


The top 3 medications that can make it harder for you to have a child: Depakote, Dilatin, Tegerotal.


Can a seizure make you have a stroke and/or heart attack?
No, the seizure can't make you have a stroke or a heart attack. But if you have either a heart attack or a stroke they can throw you into a seizure.


Can you die in a seizure?
Yes, its about a 1 out of a million chance. He said he doesn't like to actually tell his patients that. Because you have such a small chance of it happening and if it does there is no was you can actually stop it. The seizure can sometimes make your heart stop firing. And cause heart failure.

I have been seizure free for 20 years can I come of my meds?
He said this was a hit or miss. If you want to try talk to your doctor but its more than likey you will have one coming off. Most times if your seizures continue into adulthood you will not beable to come off the meds. Children can outgrow E. but most adults can't.


The cost of the name brand meds are too high, can I switch to the generic?
He doesn't suggest that at all. Because the generic only has to be with in 80% of the name brand. So one month your meds maybe 240 mg. instead of your normal 300mg and the next month it will be 330 mg. Not consistant and could further increase the seizure activity.


Can taking my meds. while I am pregnate increase the chance my child will have birth deffects?
Yes, all women have a 2% chance of their child being born with some type of defect. On the meds it increases to 4% chance. So you still have a 96% chance of having a normal baby. Depakote increases the chance of a birth defect even more up to 8%.


Why do I have no sex drive?
This he said is a combination of things. The fact of having E. most women start into menopause (which they have yet to figure out why that is) which also lowers the sex drive and some medications will lower it more so.


Keppra has the most problems with having mood swings.


Why am I always depressed?
That too he said is a combination of having E. and the some of the medications. Talk to your dr. about switching if the mood swings are too bad.


Sorry for misspelling I am a terrible speller..... I still have some more notes but I need to sit down and think about them ( wrote to fast and don't know what I wrote ) Hope this helps.


 
Old 10-14-2002, 01:50 PM   #5
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MissingRay HB User
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Hey bluebird,

It's Bridgette from ecommunities! I just found this board. I think I'm going to post Ray's story here too.

Talk to you later,
Bridgette

------------------
Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our seven year old daughter.
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Grieving over my boyfriend, Ray, who passed away from epilepsy on January 31, 2002 at the age of 23.

Ray suffered from myoclonic and grand mal seizures.

Loving father to our daughter, Colleen Rae.

 
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