Had 2nd seizure after 16 years

[jewels1964]

Hi,

I had my second seizure, 16 years after my first one. Both seizures were while on vacation. First one in Las Vegas, poolside... this one in Mexico, again poolside. Oh, I should mention that it was a tonic clonic seizure that lasted about 5 minutes. I was very combative afterwards, trying to get up from the chair... my husband didn't realize how strong I was. Bit my tongue and ended up int the hospital for about 4 hours. Was on meds for about a year after my first one, and am now again on meds since this last one about 2 months ago. Had an EEG and it showed spike and wave, even on the meds Feels so surreal, but I know my situation is not as bad as many others. Want to find out as much information about alternative treatments, not crazy about being on the anti-convulsive meds.

 

[Belinda5000]

jewels1964,

your lucky you have only had 2 seizures in16 years.I couldn't say howmany seizures I've had in 16 years.The meds could be what was controlling you.You can bite your tongue during a seizureI've done it many times.my sz's were diagnosed in 1963 when I was 2 years old.

 

[jewels1964]

Hi Belinda,

I was only on medication for 1 year after my first seizure. I was seizure-free for 15 years with NO medication. I just find it so weird that both of my seizures were while on vacation and poolside. So I realize I will be on meds for awhile, but would have to weigh the pros and cons if I've only had 2 seizures in 16 years. This is why I want to learn as much as I can about holistic alternatives to treating epilepsy.

 

[Cint]

I just find it so weird that both of my seizures were while on vacation and poolside. So I realize I will be on meds for awhile, but would have to weigh the pros and cons if I've only had 2 seizures in 16 years. This is why I want to learn as much as I can about holistic alternatives to treating epilepsy.

You may have photosensitive epilepsy, where seizures are triggered by some kind(s) of light, either flickering lights, strobe lights, or even natural light, such as sunlight.

Examples of Triggers
Seizures in photosensitive people may be triggered by exposure to some of the following situations:
~Television screens or computer monitors due to the flicker or rolling images.
~Certain video games or TV broadcasts containing rapid flashes or alternating patterns of different colors.
~Intense strobe lights like visual fire alarms.
~Natural light, such as sunlight, especially when shimmering off water, flickering through trees or through the slats of Venetian blinds.
~Certain visual patterns, especially stripes of contrasting colors.
~Some people wonder whether flashing lights on the top of buses or emergency vehicles may trigger seizures in people with photosensitive epilepsy too.

 

[masterjen]

Seizures while on holidays can be triggered by any or all of the following:
-temperature extremes (high or low)
-the general stress/excitement of being away from home and on vacation
-late medication dose due to time zone change, or missed medication
-change in sleep schedule
-change in diet, which can lead to a metabolism change, which in turn can affect how medication is digested
-low blood sugar due to irregular meals and/or being more active on vacation than usual
-greater consumption of alcohol or caffeine than usual

 

[Cint]

Seizures while on holidays can be triggered by any or all of the following:
-temperature extremes (high or low)
-the general stress/excitement of being away from home and on vacation
-late medication dose due to time zone change, or missed medication
-change in sleep schedule
-change in diet, which can lead to a metabolism change, which in turn can affect how medication is digested
-low blood sugar due to irregular meals and/or being more active on vacation than usual
-greater consumption of alcohol or caffeine than usual

Don't have to be on holiday/vacation for these types of seizures to be triggered.

I just returned from a vacation in Palm Springs, where the temp is in the 100's now, but didn't effect my seizure(s). Nor did the time change, nor did my diabetes and insulin, nor did going to a winery where my friend's have friends who own the winery. Didn't have a seizure the whole time I was on vacation. But the day after I returned, I had a mild CP.
Plus, many times have traveled and haven't had seizures. Last year, while in Boston for my son's graduation from law school, didn't have a seizure at all.
Been to Europe several times and didn't experience seizures while there. Talk about time-change and travel-log. It's a wonder I didn't have one while in Europe for the month I was there.

So, as jewel pointed out, she was by the poolside both times, so it does sound more like photosensitive seizure(s), IMO.

 

[masterjen]

Of course these triggers are not only tied to vacation! But often when one goes on vacation, a normal routine is changed.

You're YOU, Cint. Because those things did not trigger seizures in you does not mean they won't in someone else.

 

[Cint]

Of course these triggers are not only tied to vacation! But often when one goes on vacation, a normal routine is changed.

You're YOU, Cint. Because those things did not trigger seizures in you does not mean they won't in someone else.

You're correct. But go back to her posting about seizure(s) happening while by the pool. She said she was by the poolside when both seizures occurred. And like you said and she pointed out, the "normal" routine is changed. That is my point.

 

[Nakamova]

Had an EEG and it showed spike and wave, even on the meds.

Hi jewels, that's been my situation too. I've been seizure-free on meds about 6 years now, but when I had an EEG done last fall, it still showed abnormal brainwaves.

I'm sorry to hear about your breakthrough seizure. The good thing is that since your first seizure responded to medication, it's likely that your second will as well. And since you were able to go so long seizure-free, that also bodes well.

As far as triggers go, epilepsy is unpredictable -- it could just be a coincidence that your two seizures occurred poolside and on vacation. If you can think of any possible factors -- fatigue, infection, hormones, environmental/dietary sensitivities, etc. -- that's always helpful. But with only two seizures to go by, it may hard to know for sure. Here's hoping that you are able to remain seizure free on the meds, and can possibly consider going med-free again in the future.

Best,
Nakamova

 

[jewels1964]

Thanks so much for your well wishes Nakamova. I have a funny feeling that my EEGs will always be abnormal, even if they increase my meds... just the way I am built. I'm planning on a trip in September, so a little bit worried about it, but I'm not going to let the fear of having another seizure stop me from traveling.

There could be some contributing triggers this time around. Hormones (as I am now 50 eeek), I had been dieting before the trip (so perhaps some changes there), but other than that... nada. So it's now been almost 2 months since the seizure and I've been fine, but not driving of course... have at least another 4 months to go before it is even considered.

Questions for you, you only had one seizure, but have been on meds for 6 years? Are you going to try going off of them? What type of meds? Was it a tonic-clonic seizure?

Cheers
Jewels_1964

 

[Nakamova]

Hi Jewels --

I'll be turning 50 this year too... You have my sympathies.

I've actually had a handful of seizures (all tonic-clonic). The first one happened out of the blue almost 15 years ago when I was 35. Since then I've tried twice to go off medication (under doctor's supervision), but I've had seizures each time. The seizure I had 6 years ago was due to the med I was on at the time (Zonegran) which messed with my appetite and gave me low blood sugar (a likely seizure trigger for me). At that point I switched to Lamictal, and I've been seizure-free since. I would love to go off meds, but with my history it's not really gonna happen.

I think your outlook is much more promising, since you have a long history of being seizure-free AND med-free. It's not an easy decision, but if the med isn't bothering you too much, it may be a good idea to stay medicated for up to a year, just to be on the safe side.

 

[jewels1964]

Hey Nakamova,

Looks like we have a few things in common lol. I was 34 when I had the first seizure, but have had what I call stutters (split second jerks or electrical surge) since I was about 22. There doesn't seem to be a pattern to them... I can go a long time (year or so) without any, but at other times, may have a whole bunch within a week. They usually only happen in the morning and (this is gonna sound weird) disappear after I have a BM. The morning of my last seizure, I was having more than normal and they were more intense than usual too. I should have gone back to the room and relaxed, but who knows, may have had the seizure regardless.

After the first seizure, I was on Dilantin for a year... I'm trying Vimpat this time, just because I heard people tolerate it really well and not as many side effects. However, I have noticed some hairloss and increased appetite... couldn't it be the other way around??

 

[Nakamova]

Dilantin was the first med I was on as well. I didn't mind it, but it started to affect my gums, so I had to make a switch. When you were on it, did it stop the "stutters"?

The side effects from Vimpat may lessen. I had hair loss at first with Lamictal, but that and some other side effects went away after a few months. Hang in there!

 

[lindsayschu2]

Hi Jewels--We have a similar story as well--I went 17 years seizure free, though I was on meds during that time (on a very low dose most of that time and I skipped doses all the time so you could argue I was hardly on meds at all) and just started having seizures a year ago. I will be 50 in September. I had a complicating factor--a head injury a year and a half ago. But seizures can go dormant and 'wake up,' if you will. Your vacation thing could just be a coincidence. I wouldn't get too wrapped up around that axle as you could have so much anxiety around your next trip that you almost set yourself up for another seizure. Sorry you had a seizure after so long!!

 

[bighealey]

I had a head injury at age 15 that went untreated. I lived my life normally till I started having grand mal seizures. I am 54 now. so 40 years after..............

 

[jewels1964]

@Nakamova....can't remember if the Dilantin stopped the "stutters"... sorry.
@Lindsay... We DO have a similar story, sorry to hear that your seizures are back that sucks! I'm going to try and not get too anxious about traveling... but Anxiety is another issue I have lol, but under control for the most part.