Unexplained Seizures! Please help me understand this!

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sak777

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Hi All,

I stumbled upon this site while researching my issue, I'm hoping someone else has come across something similar and can provide any advice.

Ever since I've been young, I've had what are called "febrile seizures", i.e. a seizure would occur when I had high-fever. I've been told that kid's normally grow out of this. Unfortunately for me I never did grow out of this and I am now 40 years old. It's never really bothered me as it has still been very rare, i.e. once every few years.

The last episode was last year and at that time it was very traumatic for my wife to see me like that; and I had a couple of seizures back to back. Following this, we did every test possible, EEG, MRI, CT etc. and everything came back negative.

All the neurologist could say was that it was related to the high fever (101F-102F); since then I've seen another neurologist who recommended that I go on medication. I don't really see the need for medication as its always been related to my fevers and I can easily practice precaution when I have a fever. I've been wondering if anyone else has experienced something similar? The doc told me this was extremely rare.

In general I'm a fairly athletic person and work-out regularly and don't feel that this has affected my lifestyle in any way. However, I've been thinking more about this ever since the last neurologist mentioned that I should go on meds as precaution (I really don't want to). I would love to hear anyone's input. Also, for information, I have been told my seizures appeared to be "tonic-clonic".

Thanks!
 
Personally, If I were in your shoes, I'd pass on the medication. You'd just have to be very careful if and when you get a fever, taking all of the necessary precautions, taking meds, drinking water etc in order to bring it down.

It's gonna be a personal thing for you, can you cope with them? Because some medications have nasty side effects, and if it's febrile seizures, sometimes AEDs don't even combat them.

I chose not to take meds for my seizures, as they're rare, and the possible side effects of the meds worry me more than the seizures.
 
Hey Howll, thanks for your reply. That's exactly been my thinking, i.e. why bother with the daily side-effects etc. if it's been something that only happens once every few years.
 
Hi Sak777,

This is very odd. I was gonna say go see a Nero, but it seems you did. You said you're in your 40's and had fevers as high as 101F-102F....that's not good. Speaking of my own life and health, I've never had a fever over 99F after being very young. Actually, I'm in the middle of one of the worst head colds I can remember. It had me in bed for 3 days and I still didn't get a fever. I think you might want to look into that more. I'm also speaking as a parent of two grown up kids, and they had fevers ONLY when they were very, very young, (babies), but not as the grew up.

Of course I'm no doctor, but IMO, I think you might want to look into that a bit more. As for the medication....maybe a low dose of a mild seizure drug wouldn't hurt.

Like I said...I'm no doctor and this is just my opinion. Don't let this go. There might be something deeper going on with you.

I wish you the best,
Joey
 
Hi sak777. Welcome to CWE :) Glad your here.
I personally do not have a seizure disorder, my son does, so I can't speak from personal experience.

The decision to medicate or not is a tough one. I know because I had to face that same question 2 weeks ago (regarding my son). I'm fairly new here too and find it a friendly, warm place to get support and information. I'm sure you will too.
 
Hi, sak777
I wouldn't turn down the option of medication either. There is the "seizures beget seizures" theory that has proven to be real for many people: in other words, having a few seizures makes you susceptible to having more. You say your seizures occur when you have fevers of 101-102 deg. F at this stage; in the future lower fevers may start to trigger seizures, or other factors all together. It could be worthwhile inquiring about medication you can take early in the stages of a fever in order to prevent a seizure from occurring if you do not want to take daily medication.

Keep a journal around those times you are ill, even mildly: what you have done (eg. late night, huge stress at work), consumed (alcohol, more caffeine than usual, skipped meals), medications you have taken, etc. and you might find another pattern besides a high fever that cause the seizures.

Also I agree with JJR1956 about finding out why you have frequent fevers of 101-102 this late in your life, if you haven't already had this looked into.
 
Tonic-clonic seizures involve loss of consciousness, so I hope you are not driving or are extremely careful about driving when you may be ill.

Seizure susceptibility and seizure triggers can change over time. As they say with the stock market: "Past performance does not guarantee future results." So while you feel safe and in control now, that may not always be the case. I understand the reluctance to medicate, and I'm not sure what I would decide if I were in your shoes. If you decide not to take medication, be as proactive as possible with your general health (good tips in above posts) and make sure you are comfortable with the risks to you and to others if you do have another tonic-clonic seizure.
 
Of course this is a personal decision but, personally, this is one more vote for the "pass on the meds" option.

At this point you have seizures only when a particular trigger happens, a high fever.
So, I would work on avoiding fevers, strengthen your immune system, get your probiotics and your anti-oxidants and such.

IF and only if you ever have a seizure without that trigger, THEN would be the time to start medicating, IMO. Why deal with the side effects the list of which ranges from moderate to life threatening if you don't have to.
 
If it not effecting life I pass.
I was told this story I don't know if true or not.
Neuro Surgen little finger go into spasm once maybe twice a year if doing brain surgery that enough kill someone and he saved many lives and still could but that wee little 10000 to 1 chance he kill someone also taken years to train.His choice take powerful medication in itself cause big problems or give up neuro surgery.so if your life and others depended on you think about it but chance you neuro Surgen unlikely
 
Hi sak77,
I have had absence and complex partial sz. for 44 yrs. and my Dr. thought I only had a scar on the right temporal lobe after doing a lot of tests but when I had brain surgery done they found damage deep in the right and left temporal lobes that not a single test could show and this could be what's going on with you.
My advice to you is to start cold water therapy. Take your temperature 3 times a day at the same time and any time after a sz. Write down your temp. Then 3 times a day take a cold washcloth and put it on your face and the back of your neck or if you get a warning of a sz. put the cold washcloth on your face. By doing this it calms the neurons down in the brain and stops the sz. I was in a university study and the professors and students found that this worked well for people whose sz. were not under control. I wish you the best of luck and May God Bless You!
Sue
 
Hello SAK777
How are you ? I hope that all is well for you . Do Doctors have a record of How High your fever was when you got that first seizure ??? That could be Key to finding an answer , now 101 102 isn't Really High but High Fevers Can Cause Seizures ! But I would say the Range of 102 -104 or so . If the Fever you had was in That Range maybe it did damage to you that you cannot see or that a test cannot detect . It is possible . When I first got started I read all that I could on how to Counteract side effects of my medicine . So I took strong B-Vitamins and I think you should do that as well and work out and AVOID stress at ALL costs . Walk away when you have to , nothing's more important than your Health . Now if every couple of years you have a seizure , if that happened only once I would see no Problem but Something is triggering your Seizures and that is what you have to put a stop to . If you can stop the trigger you can stop the seizures from happening . But You Have To Be Observant and Be On Watch , You have two Futures either with or without meds . If you have another year or so until your next one You Had Better Pay Attention , maybe its a certain type of light or maybe you over did it doing something around your Home . Please Take Care , I want you to be well not just for you but for Your Family .

Hunter
 
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