Do Neurologists just like diagnosing people with Epilepsy?

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cait92

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Hi all,

I'm 19 years old and had a grand mal seizure about 3 months ago. At the time, I was in a clubbing? scenario with constant strobe lights and I had food poisoning the night before which meant I had only had 3 hours sleep.

I went to the neurologist as recommended by the ER doctors. I went to the neurologists who could fit me in the soonest. I was given a EEG, MRI and blood tests. When I went back they said that the EEG had abnormalities but would not elaborate more because they said they believed it was because of my ADHD medication, concerta and ritalin.

Now a bit of a background, I have a severe case of ADHD where I can not focus on anything for longer than 3 minutes. I have been on the medication for 6 years with no issues what so ever. I have been clubbing since 16 (fake ID's were a great invention) and have never had a seizure. With the help of my medication I was able to reach my potential and got into B Psychology/ B Law at a reputable university.

The neurologist is now saying that she wants me off my ADHD medication because she believes it is because of the medication. I will stress, I have been on it for AGES with no side effects until this one freak occurrence.

She won't let me drive (for 12 months from there she has said she 'will see') nor am I aloud to get another EEG for 6 months?! As much as I might sound like a brat, she has ruined my life.

I have not taken any precautions since the first seizure doing everything from drinking and clubbing to staying awake for ages and getting like 3 hours sleep - yet there have been no more seizures.

I am frustrated more than you can imagine and just want my life to get back to normal! I don't care if I am 'epileptic' but truly believe that I am not.

Does anyone have any similar experiences ect?
 
Welcome Cait92, Yes your story sounds very like my daughter's (she's 20) apart from the ADHD factor. I think it's natural to hate the neurologist but she is only the bearer of bad news not the cause, and if it is epilepsy, then you will need a goood neuro, although possibly not this one. And I don't see that she can stop you getting a second opinion on the EEG.

Unfortunately an hour without abnormal activity on second opinion wouldn't negate ten minutes with a bad trace if there is an underlying issue - hallmark of epileptic EEG is they may not be abnormal all the time :(

Regarding the ADHD drugs, I don't know what specialty doc prescribes them but I suspect the neuro has no idea what your life would be like without them - most likely the university course might become impossible for a start. They have brought your thought-life under some control and let you achieve great stuff so far and it's a shame to lose that. From what you wrote, I think I would be going back to the doc who deals with your ADHD and put you on them six years ago and say, Look I seem to have got this seizure problem, could your meds have caused it, and is there a different ADHD drug I could switch to instead; otherwise you might have to balance the risks of seizures against the damage of not taking the right meds... tough call, and a doc who has known you for a longer time would have a better overall view.

That's just my take on it Cait92 but I hope you find answers here; there are lots of really helpful sympathetic people posting, many parents like me on the learning journey with you and it's great place to vent. There does seem to be a gap in provision at the Young Adult stage, as well as actually quite a lot of people having a first seizure at your age, and it's SO frustrating to have your new independence and freedoms threatened and your whole life plans challenged. But you may need to meet the situation half-way, nobody can prevent food-poisoning but you can choose which clubs to go to.

Speaking of other "precautions"... make sure you do! ;)
 
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Hi cait92, welcome to CWE!

An epilepsy diagnosis usually isn't made until you've had 2 grand mal (tonic-clonic) seizures. So unless you had an EEG that was extremely indicative of epilepsy, it would be unusual for the doctor to make that call. If you feel you've been misdiagnosed, then it can't hurt -- and will probably help -- to get a second opinion. In particular, see if you can get your neurologist and regular doc on the same page regarding your ADHD medications. I can see why the neurologist would be concerned about them, since they have stimulant properties, and folks who are vulnerable to seizures need to minimize their use of stimulants. But if they've been a regular part of your life with no other side effects, then it's not so likely that they will cause a seizure in the future.

What are the legal requirements where you are regarding driving after a seizure? How long do you have to be seizure-free (most places specify 6 months to a year). Do you have to get an okay from the neurologist before you get your license back? Look into what your options are. If the neurologist is the only sticking point, that's yet another reason why a second opinion can be worth pursuing.

A note of caution: While your seizure may well be a one-off, it doesn't hurt to take it as a wake-up call to be a tad more careful in how you treat your body and your brain. Things that may have had no negative effect on you in the past can start to have a cumulative effect over time as your metabolism changes with age. I'm not saying that you shouldn't go clubbing ever, just that next next time you have food poisoning maybe you should make extra-sure you get properly hydrated and rested before heading out. :)

Lastly, you might want to look into neurofeedback some day. It has shown success in treating ADD/ADHD, and unlike the meds, the results can be lasting after the treatment is over. NFB might allow you to reduce your dosage of the ADHD meds (and it can have other neuroprotective effects as well).

I hope you get things straightened out with your doctors, and remain healthy and seizure-free for the duration.

Best,
Nakamova
 
A note of caution: While your seizure may well be a one-off, it doesn't hurt to take it as a wake-up call to be a tad more careful in how you treat your body and your brain. Things that may have had no negative effect on you in the past can start to have a cumulative effect over time as your metabolism changes with age. I'm not saying that you shouldn't go clubbing ever, just that next next time you have food poisoning maybe you should make extra-sure you get properly hydrated and rested before heading out. :)

:agree: Plus once a brain starts seizing, it could bring on more seizures in the future. Once one has experienced a bad seizure, you do need to pay attention and take better care of yourself.
 
Hi Cait,

My situation is a little different than yours, but also sort of similar... I never dealt with ADHD, but I also had a seizure pop up out of nowhere. I had done SO many things that could cause seizures in the past if I had been dealing with epilepsy (from 18-21, I was in Germany, so it was all legal anyway!)... I used to go clubbing all the time, get very little sleep, drink caffeine, take Hydroxycut (after ephedrine was removed, or who knows what it would have done) so I could stay up later (gosh, I was so unhealthy...) I'm also in the military, so lacking in sleep is pretty normal even without partying... Fast forward to when I'm 24, I'm not doing these things and haven't been for a few years (minus the too-much caffeine), and I had my first grand mal seizure in the middle of a class lecture. Unlike you, however, they didn't find abnormalities on my EEG (which was a week after the actual seizure) so they didn't do anything as far as medicine went (though I couldn't drive for a few months) and did NOT want to diagnose me with anything. I thought I was free from seizures, I even made a joke the Friday night BEFORE my last grand mal that it was a good thing I didn't get seizures (flashing lights during karaoke). Haha. Joke's on me.

Unfortunately, I wasn't, and my auras started getting more and more frequent, especially in the past six months, even though I took much better care of myself, and was getting more sleep than I ever was as an 18-21 year old (I'm 26 now). I finally had another grand mal at work while deployed to Afghanistan, while I was getting more sleep than I ever did at college, and taking pretty good care of myself. This time they found abnormalities on the EEG (the neurologist told me that it's most accurate within 72 hours of a seizure) and started me on medication. Anyways, now I'm STILL getting auras (ON medication), and based on what I've learned, I'm pretty sure part of the reason they were getting more and more frequent was because it was left unchecked for so long. I went over two years before I had another grand mal, and even now I wish I WASN'T on medication because I don't mind the auras, but I know if those were probably getting worse, my chances of grand mals were probably getting higher. So I would agree with what some others have said, that your chances increase the longer you go, and it's probably good to get treated NOW. I don't think many neurologists will diagnose you with epilepsy unless they have a good reason to do so... Especially with all the side effects that the medicine can cause (I know that's why my first neuro avoided it). I'm sure he or she has your best interests in mind for the most part.

Good luck! :)

Nina
 
My son is epileptic AND takes meds for ADHD. He takes Trileptal for his seizures and Daytrana (a patch...LOVE it!) for his ADHD. His neuro monitors both conditions. I honestly don't know what we would do without his Daytrana patch...it is just that awesome.

I think that a person's quality of life is at huge risk when they are ADHD and are taken off their meds. I would get a second opinion for that reason alone. If they think your meds might be causing the seizures even after a second opinion, then maybe changing meds to fit you better is an option.

As for the risk taking you are doing, I also agree with the other people on here...use this as a wake up call. Treat your body better, even if you aren't epileptic, a seizure is a sign that your brain is on overload. You can have fun and still be responsible. You're still young...don't ruin your body so that you can't enjoy it later on!
 
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