Out of my depth

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EmarieBake

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I am 22. I had my first seizure a week ago. My husband witnessed it. He says my eyes rolled back in my head and I fell. I knocked a hole in a bedroom door with my head, locked my jaw and convulsed for 30-45 seconds. When I woke, I thought I'd had a panic attack until I saw the hole in the door.


I went to the ER, had a ct scan (results were normal), and was diagnosed with a urinary tract infection and referred to a neurologist. I followed up with the neuro the next day. He scheduled me an EEG, mra/MRI, and some blood work. He also prescribed me Dilantin that day and antibiotics to replace the ones the ER gave me.

I had a horrible reaction to the Dilantin. I took it the night after the visit to the neurologist. 100 mg capsule 3 x a day was prescribed. I took one dose before bed and (even though I had been kept awake the entire previous night by th ER staff due to the knock on my head) was kept awake all night by my entire body shaking, a headache, the need to move around, and dizzy spells that kept me from getting up. I didn't realize this was a side effect of the drug and thought that it was the after effects of a seizure. I took my 2nd dose the next morning to the same effect and looked up the drug on web md.

I have not taken another dose. When I called the doctor he suggested a lower dosage, but I am scared to death of the SE. I haven't been on anything except antibiotics since. The drugs seem so extreme when they haven't diagnosed me with anything or even given me my test results. I go for those tomorrow.

If something distinctly shows in a test result that says I'm likely to have another sz, I'll feel more comfortable cooperating, but the side effects of that medicine made me have to send my daughter to her dad's house. He was fine helping but I couldn't handle having her gone all of the time. I've always had custody. Besides that, I'm terrified in general right now. I'm afraid that I'll have another one, but I'm also scared that using medicine I don't need will damage me. I have been previously diagnosed with dysthymic disorder and have been living unmedicated successfully for 5 years. I would hate for meds I don't need to throw me back into depression.


Are the side effects normal?
How will they know if I'm really epileptic if I only have one sz and then end up on meds which list seizure as a side effect?
Should I just accept this medication even though I feel like I don't need it?
What is the harm in waiting to see if I have a 2nd seizure before starting what I have been led to believe will be a lifelong treatment?
 
Hi EmarieBake, welcome to CWE!

You ask some very good questions. In general, a diagnosis of epilepsy isn't made until after two or more seizures have occurred. So you are right to be hesitant about committing to meds. I had the same reaction when I was prescribed Dilantin after my very first seizures. I felt truly lousy, and I thought it was the after-effects of the seizure that I was experiencing -- when actually I was way over-dosed on Dilantin. Like you, I felt dizzy and shaky. Eventually I saw a neurologist who agreed that the dose was way too high, and I ended up on a much smaller dose.

In my case, EEG tests did indicate epilepsy, and I have had to stay medicated. But in your case, I think you are justified in holding off on the meds until there's more clinical evidence (i.e. another seizure) or confirming test evidence (i.e. a definitive EEG). Aside from your bad reaction to it, Dilantin is also problematic because it can have long-term side effects on calcium absorption and teeth and gums. If you did end up on a med, it probably shouldn't be Dilantin anyway.

Do you have a sense of what might have triggered your seizure? Often a one-time seizure can be related to infection (like the UTI you mentioned) or fluctuating hormones, and also other stressors like unusual fatigue, low-blood sugar, or dehydration. In addition, some folks can be triggered by food additives like MSG and aspartame. If you have a sense of what the trigger or triggers might have been, do your best to avoid them and be proactive about your general health.

I hope this seizure is indeed a one-time thing. When do you have the EEG?

Best,
Nakamova
 
I had a low grade fever when I was in the ER. I imagine that I might have had it for a while and blown it off because 3 wks ago, I had all 4 wisdom teeth pulled and 2 were infected. I had just finished my amoxicillin and motrin for that.

I was talking to my husband about his new flare of chronic bronchitis when I fell. He almost got pneumonia this time and I was worried. That's why I thought I'd had a panic attack until he showed me the door and explained what had happened. I've had panic attacks in the past.

It seems to me that any of those things could have triggered it as I've had a poor diet lately. I always lose my appetite on antibiotics.

I had the EEG already. I completed all of the testing but have only been given the results for the ct scan in the ER. They said everything looked normal. The MRI/mra lab told me unofficially the same thing about those tests. I'm just wIting to hear back on the bloodwork and EEG. Hopefully I'll find out about that tomorrow at my appointment.

I feel like I'm being irresponsible by not cooperating fully. I don't know what I'll do if the EEG is normal as well. I can tell the doc doesn't want me unmedicated. I have no problem not driving or drinking alcohol or locking doors. I'm really scared of the meds though.
 
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I also meant to ask: why should it probably not be Dilantin? Aside from the bone thinning and dental problems, I mean. Is it a catch all or something? The dr also mentioned tegretol as a possibility if I don't respond well to lower dosage of Dilantin. I'm hesitant to take anything after that first reaction.
 
Emarie,

I agree with what Nakamova said.

Dilantin is a drug that works for many people, with minimal side effects. For others, the side effects are devistating. Everyone responds differently to different drugs.

Dilantin has been around a long time, and over the very long term, it can have some side effects that are more severe. In the old days docs used to prescribe Dilantin because that was pretty much all there is. I imagine your doc prescribed it because he knew it would work - he just didn't know what side effects you would experience.

There are newer drugs out now with fewer side effects. Lots of people in here are on Tegretol and Topamax for their generalized seizures (generalized means whole-brain, which is what it sounds like you had).

Two great websites with more information on all of this are:

www.epilepsy.com
www.epilepsyfoundation.org

Will you be sure to let us know how you are doing?
 
Dilantin is often prescribed in the ER because it can be ramped up quickly, and because it's a very inexpensive drug -- the newer ones, even the generics, are much more expensive. Mostly it's the long-term side effects that make Dilantin less-than-optimal.

Don't feel irresponsible for not taking the Dilantin AEDs are powerful and affect your whole system -- similar to anti-depressants. If you had a bad reaction and don't absolutely need to be on the Dilantin, then you're decision is rational. And since you aren't driving and/or drinking you are being careful. Your doctor has an equally rational, but different point of view. In this particular case I don't think it outweighs yours.
 
I couldn't agree with Nakamova more (as is often the case). I just wanted to add that while Dilantin may be the best option for some people, as most every ER doc is familiar with it, and some people respond really well to it, a problem that I experienced, independent of side-effects, was a wide fluctuation in blood levels, especially combined with other drugs (Lamictal).

I found I ultimately did much better when i eliminated Dilantin from my medical regimen, as I was having more seizures from crashing off of it than I may have had otherwise. But we definitely all metabolize things differently.
 
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The Dilantin was actually prescribed by the neurologist I made an appointment with the day after the ER. The ER didn't actually give me anything for the seizure just antibiotics, which the neurologist switched before I even filled the script. They had given me cipro which apparently isn't good for seizure patients.
 
Interesting about the cipro. I don't remember hearing that before. Dilantin is an interesting first choice. Is your neurologist super old school or what? Did he give you any reason as to why he chose that drug over the newer options with generally fewer side-effects?
 
Everyone reacts

differently to different meds. I've been on Dilantin for a total of 35 years out of my 46. And I've had E all my life.

You were having a really bad reaction to Dilantin. Whether or not it was because you were overdosed on it, or because you just can't tolerate it at all is a moot point now--it's kind of hard to determine after only taking 2 doses.

But I have to agree with Nak on several things. Normally, it does take 2 seizures or more to diagnose someone as having E. And, yes, there should be positive clinical testing to show that there is some E activity going on to confirm the diagnosis.

HOWEVER. Keep this in mind. Not all E patients will have a positive test of any kind, yet may still be an E patient. Right now, you've only had one seizure, so you're still on the line. There are a number of reasons that could have contributed to WHY you had it--but that also tells you something...

****I had almost 40 years worth of clean EEGs before they started showing something recently, yet I still have E****

YOU HAVE A LOWER SEIZURE THRESHOLD than most people. While this can also be true of diabetics, and other patients, too, you don't seem to have those problems.

Infections CAN lower the seizure threshold as well, so taking care of yourself is VERY important, as you've discovered.

I'm NOT telling you to go on the meds. I AM telling you to take care of yourself, and to pay attention to what the doc has to say. AND get a second opinion. You'll feel better that way. Doctors are NOT gods. At least he was smart enough to take you off the Cipro.

Take care, and good luck.

Meetz
:rock:
 
Wow. I had a huge flurry of seizures during my last sinus infection. I figured it was because I was sick. It didn't occur to me that Cipro could be the culprit.
 
LOLOL, there's

a reason why I've NEVER been allowed to take Cipro.......NOT ONCE. And that would be? My seizures..........
 
Back from the neurologist appointment.

Thanks for the helpful conversation, everyone.

I just got home from my neurologist's office. All of my test results came back normal, and he gave me 2 options. The first was to try tegretol and a 48 hr EEG to keep looking for a diagnosis. The second was to not take any meds and see what happens.

So, with my promise that I wouldn't drive for 6 months or drink alcohol, he let me go. He wants me to come back if anything weird happens but said that he was optimistic. As long as I take better care of myself, he doesn't think I'm likely to have another. He did say that if I had seizures in my family history, he would be more insistent on the meds.

Apparently when his nurse told me that I would still HAVE to take something for seizures, she wasn't familiar enough with my case to judge.


So, thanks again everyone for helping me not panic. Also, it helped out a lot that I didn't stay on the Dilantin. I feel a little more comfortable trusting my own judgement. It would be awful to have to wean myself off of it now and risk another spell when I'm trying to go natural.

He told me that I shouldn't over-do caffeine and no alcohol. Is there anything else I should know? He didn't mention the MSG or aspartame, although I was already not supposed to be using artificial sweeteners.
 
Emarie,

That is WONDERFUL news! :)

There are a lot of potential seizure triggers out there, but everybody is different so I wouldn't stress out about it too much or you'll go crazy like me. lol...

As for things to watch out for, I'd say just live a good life. Eat right, drink plenty of water, get enough sleep. Breathe. Keep stress down to a minimum. Love your family, and your friends. That should keep you out of trouble for at least a little while.

If a seizure is gonna happen anyway, it's gonna happen. But it's probably not gonna happen. So be happy, okay?
 
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