Really Need Help and Advice

[ElaineF]

Hi

My sister has Epilepsy, she cannot talk or walk, she is 31 and has been on Tegretol all her life and was told she will never get off it, however they have added Keppra with that and she is on 1250mg morning and night of Keppra and 400mg morning and night of Tegretol..
What i am asking please is some feed back regarding 1st Epilepsy and how people feel afterwards, i've heard one can get headaches and dehydrated.
And 2nd Side effects of taking thoes tablets please, we have noticed some changes but we don't know if it's cos she is getting older.

Finally does anyone in here take Medazalam for seizures and if so what are the side effects.

Thanks Guys

[Bernard]

Hi Elaine, welcome to the forum.

Keppra is infamous for it's "Kepprage" side effect. If your sister is experience strong moodiness/grouchiness corresponding to the addition of Keppra to her regimen, you might suggest that she take a small vitamin B6 supplement. See here for more info:

Kepprage: How do you de-stress?

[epileric]

Welcome Elaine,

How someone feels after a seizure depends on the person & their seizures. I usually have partial seizures (petit mal) and even then how I feel seems to differ from seizure to seizure. I do tend to measure the strength of a seizure by the post-ictal effects. A smaller seizure won't do much, I'll come out of it & just continue like nothing happened, one a bit bigger will make me a bit confused for a little while but I'll keep doing what I'm doing. If it's one of the bigger & more intense seizures I'll have trouble talking, be extremely confused & it would feel like I"m living in a dream because I'm too tired mentally to be all there and it is very hard to focus. I have had a few convulsions and afterwards I feel the same but worse but ALL my muscles, even the involuntary ones hurt like heck and my tongue hurts & bleeds from chewing on it.

Keep an eye out for excessive side-effects. A conclusion I've come to after wasting a lot of my life just zoning out from the side-effects of anti-epileptic drugs is that the drugs are here to increase the quality of my life. If the side-effects are enough that they decrease the quality of my life more than the amount or intensity of my seizures decrease my living quality, then it's not worth it.

What kind of seizures does your sister have & (if you don't mind my asking) why can she not talk or walk?

[Nakamova]

Hi Elaine, welcome!

Epilepsy is different for everyone (it's really just a loose term for many different seizure disorders), so it's hard to know for sure whether the side effects your sister is experiencing are from her epilepsy or from the meds. Are you asking about how your sister feels right after having a seizure or in general, all the time?

If it's all the time: I would suspect the dehydration is a medication side effect -- it's not a common symptom of epilepsy itself. (Tegretol is known to cause dry mouth for instance.) The headaches could be a medication side effect or a co-existing condition or both. Many people have both migraines and seizure disorders, and they're somewhat related.

If it's right after a seizure (especially a grand mal or tonic-clonic seizure): It's not unusual to have a headache and also get dehydrated. The body is weary, there's often nausea, and it's hard to eat or drink.

Midazolam (also known as Versed), is mostly used to stop acute seizures on a short-term or emergency basis. It's a benzodiazapine, which is a class of drugs that people can develop a dependence on or tolerance to, so it's not recommended for long-term use. It's also a powerful sedative (sometimes used for anesthesia), so it can make you drowsy, cause amnesia, affect cognition, etc.

Best,
Nakamova

[Cint]

Welcome ElaineF,

I've had epilepsy for 30 years now and have tried nearly every anti-seizure drug on the market, including Tegretol. I was on Tegretol for about 8-10 years and was taken off because it lost it's efficacy for me. So I don't understand why your sister was told she will never get off Tegretol. And as Nakamova said, dehydration is a symptom of meds. I was once dehydrated because of the Tegretol, not because of epilepsy. I also get migraines and sometimes take a prescription drug for the headaches.
Currently I am taking Keppra, but the "Kepprage" everyone seems to talk about hasn't effected me like some of the other drugs. It does seem to make me thirsty all the time, tho, so make sure she drinks lots of water.

And as Nakamova stated, Midazolam is a powerful sedative. For more info on Midazolam:
http://www.drugs.com/cdi/midazolam.html

[Endless]

Elaine,

Welcome to CWE.

As was mentioned before, Medazalam (Versed) is a pretty strong drug. It's used before/during surgery and as an emergency med for seizures. I think it can be habit forming, so they don't use it often, or they don't use it long-term.

By on Tegretol for life, do you mean on anti-seizure medications for life? Lots of new ones have come out in the last 31 years. If the side effects aren't tolerable on the Tegretol or Keppra, there are other drugs to choose from. Everyone reacts differently to each medicaiton.

I was on Keppra for a time. It affected me a little differently than I've heard people describe their reactions. It's like someone turned my switch to "on." I ate too much, got angry too much alternating with depression, slept too much, shopped too much, etc. Everything was just TOO MUCH.

Is there a way your sister can communicate what she is feeling? Or do you rely on what you can observe to judge what changes Keppa has made? If observation is the main method, I'd look out for increased frustration/anger, increased sleepiness, depression, or changes in apetite.

[ElaineF]

Thanks guys for your feedback.. I'm so gratefull

My Sister is physically and mentally disabled, and since 9mts old she has epilspsy,the doctors thought she wouldn't live past 10 she is now 31, She is on tegretol for 20years, they tried once to change her off it to another tablet but she got violent siezures so therefore the doctors knew tegretol was doing it's job and she wouldn't get off it,, since then they have added the keppra about 2years ago,, started off low dose,,,

It's from observing her all this time do we know her different reactions,, it's like reading a book now we know her so well... Since the keppra increased her mood reaction has been laughter (which is great) she gets into stitches of laughter and could stay laughing for hours,, That really is the only change we have noticed..but if she gets too excited it will trigger seizures...

her sleeping patterns was never great anyway but maybe the keppra hasn't improved it.. so other reactions i've read from others is not unsual for my sister to have... it wouldn't take alot to trigger a seizure for my sister,, she has athsma so that triggers one, she had eczema and the irritation can trigger one, it's actually easier for me to tell ye what she doesn't have.. but all the little issues she has all can cause epilepsy, however her medication is controlling it,, but if she gets seizures ones that could last up to hours she needs the madazalam..

this is something new she is taking she used to take diazapam in stesoloid from so I would love to know if anyone has taken madazalam is there any bad reaction like emotion wise.

My sister gets so many different types of seizures. Other than that she is great lots and lots of love off her.

Thanks again for all the information, it's through your experiences that we learn.. Thanks guys xxx

As for the Dehydration i've noticed after a seizure especially where she might need the madazalam to help get her out of it,,, she has drank up to 2.5 litres of water and 7.up (or sprite same type of drink we mix both together) and then she is in great form... she keeps looking for drinks so we obey her just wondering if that is from the seizure or the meds that took her out of it.

[Nakamova]

Just a heads-up -- I think Sprite contains aspartame (Nutrasweet). It's a seizure trigger for many (including me), and is generally to be avoided if you have a low seizure threshold. It's a bit like MSG in that way. I'm not sure if 7-up has aspartame too, but you might want to double-check...

[epileric]

Also realize that sprite & most pop causes dehydration from sugar even it has no caffeine. The bubbles might quench a thirst though but that doesn't mean it is hydrating.

From what I could find, normal sprite doesn't have nutra-sweet but I don't know if there's a diet sprite. I would worry about the high fructose corn syrup.

research has shown over and over again that there is a connection between soda consumption and weight gain. According to researchers, each time you drink Sprite or any other soda, the risk of obesity increase 1.6 times. In addition, there are other health risks like tooth decay, weakening of bones, liver and kidney damage, dehydration, diabetes and elevated blood pressure.

http://www.scumdoctor.com/nutrition/...gredients.html

[ElaineF]

Thanks guys I did not know that.,, It is generally 7.up we'd give her mixed with water,, she also drinks Tea, Juices and dilutable juices like ribena also cos she doesn't walk we give her drinks that help reduce cholesterol which is working. We try to give her more water than anything.

Thanks so much for your information.

[Endless]

Elaine,

I avoid pop/sodas altogether. Neither sugar nor artificial sweeteners are good for us. As an alternative I make my own natural sodas.

A couple of tablespoons of juice (orange, mango, etc.) in a glass of water with plain soda water poured over it. You can get big bottles of plain soda water at the grocery store.

Ginger Ale - Finely grated ginger, a few drops of Stevia (natural non-sugar sweetener), topped off with plain soda water. (This is my drug of choice for nausea.)

A smoothie with a high water content - a very ripe bananna, about a half cup of diced fruit (any kind), ice cubes to the top of the blender, plus about a half cup of water, and blend. Add more water if you need to. Add stevia if you want to - it makes it sweeter. You can also substitute milk, almond milk, coconut milk for the water. You can also add protein powder if you want more nutritional value. Yummm....

I don't know how old your sister is, but if over 21 a nice fake drink is a treat. Pina Colada - 1 cup fresh pineapple, 1 can coconut milk (not the low fat stuff), 1/2 tsp rum extract (you can get natural extract at the health food store), ice to the top of the blender and blend. Yummmmmmmmmmmmmmmmmmmmmmmm!