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doing another video EEG in June

Sat, 05/28/2005 - 15:55
i contacted the Minnesota Epilepsy Group and discussed all my of my symptoms and all, and my "history" and all that kind of stuff and they want me to do another video EEG ASAP because my symptoms so closely represent E..it's tentatively scheduled for June 14th( tentatively because the u of minnesota loved to take their sweet time sending over the medical records to them, i already sent the authorization forms that i had to sign in order to get them transferred over). this one will be 7-10 days, the last one was only 4. is it normal for people to do a video EEG for that long...? seems a little long to me, the first thing i'm going to do when i get out is take a reallyyy long run, i am very active and very hyper, 7-10 days will realllyyy be torture. It will be right around the start of my cycle, when most women have their problems, like i do, and it will really be torture because my periods are horrific, and the only way i can relieve the cramping is getting up and moving and i won't get to do that. i may be screaming LOL. they may have to give me the "hard stuff." Also..I wanted to ask this..sounds pretty likely i will have to undergo some treatment. i have had a history of high blood pressure( when i was obese in my teenage years, now it is excellent), i have had a history of depression and anxiety, and eating disorders specifically anorexia, as well as having very bad kidneys and being suicidal for a short time in my life also. I don't believe medication is a good idea in my case, I think i have had too many issues already and they might me brought back by that sort of thing.. Especially considering my first seizure was the result of my electros getting too low and i hear anticonvulsants deplete a lot of stuff, including sodium. I don't think it would be safe for a distance runner who is wishing to someday go beyond a normal marathon and do the ultramarathons to have meds in her system that could cause more seizures. What do you people reccomend..? I already have my mind pretty much made up that I am not going to take anything i deem something that could potentially make my life worse. I don't see how something that will potentially make my seizures decrease or go away but will potentially make me feel miserable will better my life. For those of you who are the competitive athletes, how did u decide on what kind of treatments u wanted...? And how did they/are they working and have they affected your lifestyle..? take care, have a FANTASTIC weekend.

Comments

RE: doing another video EEG in June

Submitted by kayakmom on Sun, 2005-05-29 - 07:33

7-10 days is not that uncommon for a VEEG. Some people go in and just do not have a seizure. My son has now had 4 VEEG, an 8 day, 7 day, 2 day and 10 day. No seizures shown. Very frustrating. I do not plan to do one again.....

 

Yes, meds can do the things that you say, but they can also save your life if they control seizures. They can allow you to keep driving, since a DX of seizures, or even a seizure where you loose consciousness can have your license suspended.

 

it is important to talk things out with your doc and find the right med for you that does NOT impair quality of life as much as possible. There are some newer meds that do not do as much negative.

 

It is great that you are so active. You can ask that they bring in an exersize bike while you are in for VEEG> often they offer this to try and induce seizures. I find that calcium/magnesium do help a tremendous amount for me with my cycle, maybe it could help you as well. SOunds like the timing is good for you to go in and have them see what is going on!!

 

 

Best wishes. Hoping it all goes well!

 

 

7-10 days is not that uncommon for a VEEG. Some people go in and just do not have a seizure. My son has now had 4 VEEG, an 8 day, 7 day, 2 day and 10 day. No seizures shown. Very frustrating. I do not plan to do one again.....

 

Yes, meds can do the things that you say, but they can also save your life if they control seizures. They can allow you to keep driving, since a DX of seizures, or even a seizure where you loose consciousness can have your license suspended.

 

it is important to talk things out with your doc and find the right med for you that does NOT impair quality of life as much as possible. There are some newer meds that do not do as much negative.

 

It is great that you are so active. You can ask that they bring in an exersize bike while you are in for VEEG> often they offer this to try and induce seizures. I find that calcium/magnesium do help a tremendous amount for me with my cycle, maybe it could help you as well. SOunds like the timing is good for you to go in and have them see what is going on!!

 

 

Best wishes. Hoping it all goes well!

 

 

RE: RE: doing another video EEG in June

Submitted by AvidRunner22 on Mon, 2005-05-30 - 07:50
i run about 30-40 miles per week and bike about 100 per week. there is no way having me on an excercise bike will induce a seizure..maybe if I rarely worked out but that's just it, I do it every day. And as far as I am aware of so far at least, there is no mention of doing a sleep deprived night like last time. Excercise absolutely positively makes me feel better and I have still yet to have any problems when I excercise. I tried to get an excercise bike the last time I did one of these but I never got one. :( And let me tell you, I did go nuts just sitting around. As far as driving is concerned, I have absolutely no desire to get back behind the wheel. I don't care if my seizures are under control or not, even if they are under control they can and still happen. I don't want to end up seriously injuring or killing some1 because I do not care to live with that and in my eyes, it would be MY fault. And I would live as a tortuted soul for the rest of my life. I don't need that. i've not seen any1 yet from the MN Epilepsy Group obviously, but I am much happier with what they are doing than my former neuro clinic, that didn't do much of anything. Everyone on here tells people to go and see someone who specializes in epilepsy but it seems that most people just go to a normal neuro. i won't go back to a normal neuro now, pretty sure of that. because my former didn't listen. i'm hoping that these people will take me seriously and will make damned sure that the treatment isn't worse than my current status. I am very adamant about maintaining my lifestyle, and I will drive them crazy if I have to just to make sure that I can get very close to where I am now. I'm hoping I don't get treated like just "another patient," because I am taking a good guess that they prolly don't have many patients who run 7 minute miles and cycle to the opposite side of the state just for the heck of it.

RE: RE: RE: doing another video EEG in June

Submitted by mommy2kyra on Wed, 2005-06-01 - 17:03

Hi avidrunner,

Sounds like you are very active, that's fantastic! Good for you :)

I don't think that any patient should be treated without heart. Everyone is special and deserves to have their questions answered, rather than being shoved out the door to make as much $$ as possible. But, thankfully, not all docs are like that. You just have to keep searching for a doc that you "click" with.

I'm curious though, if you've already made up your mind about not accepting medications that will have crummy side effects, why do the VEEG? Unfortunately, ALL meds (prescription and over-the-counter) have side effects. Some side effects are real bad and the intensity wanes after a couple of weeks, to an acceptable level. Other side effects aren't so bad, but may be longer lasting. A lot of the newer meds have more tolerable side effects. You just don't know where you'll fall. You might get lucky and find the right med (and dosage) right off the bat. Or, you might have to try a few times before you find your niche.

Seizure control is important though. Seizures do have a cumulative effect on the brain, if you can prevent them from occuring I would do all I could to do so. An occasional breakthrough seizure is one thing, but if your seizures are totally uncontrolled your brain will definitely be impacted. If you've already made up your mind that you won't drive, and you're happy, that's great. But, please don't think that driving is the only thing affected by seizures. If you could have a seizure while driving a car, you could have one while out running or bicycling. Right? When I was about 10 or so, I was hit by a car while riding a bike...I didn't get on a bike again for more than 10 years (because of my fear). My point is, a bike accident can be pretty darn scary too!

Just some things to think about...btw, my hubby is from MN (Rochester-area) and we're trying to get back there :) So, let me know if you run into a good neuro if you're in that area!

Heather :)

Hi avidrunner,

Sounds like you are very active, that's fantastic! Good for you :)

I don't think that any patient should be treated without heart. Everyone is special and deserves to have their questions answered, rather than being shoved out the door to make as much $$ as possible. But, thankfully, not all docs are like that. You just have to keep searching for a doc that you "click" with.

I'm curious though, if you've already made up your mind about not accepting medications that will have crummy side effects, why do the VEEG? Unfortunately, ALL meds (prescription and over-the-counter) have side effects. Some side effects are real bad and the intensity wanes after a couple of weeks, to an acceptable level. Other side effects aren't so bad, but may be longer lasting. A lot of the newer meds have more tolerable side effects. You just don't know where you'll fall. You might get lucky and find the right med (and dosage) right off the bat. Or, you might have to try a few times before you find your niche.

Seizure control is important though. Seizures do have a cumulative effect on the brain, if you can prevent them from occuring I would do all I could to do so. An occasional breakthrough seizure is one thing, but if your seizures are totally uncontrolled your brain will definitely be impacted. If you've already made up your mind that you won't drive, and you're happy, that's great. But, please don't think that driving is the only thing affected by seizures. If you could have a seizure while driving a car, you could have one while out running or bicycling. Right? When I was about 10 or so, I was hit by a car while riding a bike...I didn't get on a bike again for more than 10 years (because of my fear). My point is, a bike accident can be pretty darn scary too!

Just some things to think about...btw, my hubby is from MN (Rochester-area) and we're trying to get back there :) So, let me know if you run into a good neuro if you're in that area!

Heather :)

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