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DougIn...
DougIn...

Diet, Drugs, sleep... What is known to increase/decrease seizure activity?

Hi there, I'm fairly new to this site, so you may have talked this issue to death already.  If so, please point me to the conversation.

I've been living with "episodes" for over 20 years that last about 5-10 seconds where I cannot process speech (written, spoken, sung).  I am aware of this and can continue to walk, chew gum, play drums, drive etc.  I have had 3 gran mal seizures during those 20+ years.  I'm currently on Carbitrol - 1200 mg/day.

Anyway, I've been trying to correlate an increase in episode activity with my diet, sleep cycles, etc. and cannot find any rhyme or reason for the periods of increase.  I can go months without any activity, then go several days where they happen 10 times per day.

I gave up Diet Coke for a year and it made no measurable difference.  I've almost thought I could correlate pizza with increased activity, but don't have enough data to back this up.  I once thought broccoli triggered it too, but have since rejected this.  During times of little sleep, I often do better than times where I get a lot of sleep.  Like I said, no rhyme or reason.  I've considered writing a detailed journal to be more scientific about this, but I'm way to busy for this...

I noticed on another thread that antihistimines can trigger seizure activity.  I took a Claritin the day before yesterday and yesterday was really bad.  Today I seem to be back to "normal" with no activity.  I hardly ever take any drugs other than the Carbitrol, so this is only a side note.

Have any of you found a correlation between diet/exercise/sleep/whatever and increased/decreased seizure activity?  I'd love to get some ideas for things to try.

Thanks,

Doug

 

 

By DougIn... at Wed, 04/22/2009 - 11:56pm | 159 views | 12 comments
diet, drugs, sleep

Recent Comments on this Discussion

I've tried to correlate my partials to every variable I can imagine. Diet (I have an extensive diet log) and I can find no correlation. I tried going low carb even the modified Atkins diet for a while, no correlation. I'm a runner and log that as well. no correlation to whether I run or not. Sleep patterns don't seem to correlate. I to am in a scientific field, although not a statistician my job often requires the use of statistical tools and I can find no correlation to anything. I have basically given up on correlating my seizures to all reasonable variables. The seizures appear to be truly random (for me at least), and EXTREMELY frustrating. I find no other choice but to "give in" to drug therapy and just keep trying different ones at different doses until something clicks. This effort as we all know takes time, a lot of time. None have worked for me yet. The whole thing is very depressing but I try, try ,try not to let it get me down. Thanks for reading. Good luck everyone. 

mcm

Hi mcm,

You are singing my song!  I too have given up looking for triggers for my partials.  My other post in this thread shows that I'm currently having good results with a Keppra/Carbitrol cocktail.  I'm hoping I will still have good results when I am weaned from Carbitrol completely.  I really don't want to ruin my liver with too much of anything.  I guess it is better (and safer) than having uncontrolled epilepsy.

Best wishes in finding the cocktail that works for you,

Doug

 

DougIn...

It has to do a lot with the diet and sleep (I don't know about the drugs but probably that too). I had similar problems and they stopped once I started the Cardio fitness program.

helperr

I agree with all your total confusion. I do know the woman who used Arts Council funding to try to have an epileptic fit to order, before an audience, in spite of depriving herself of sleep, flashing lights, doing everything she could to aggravate a seizure, failed to do so.

It sounds like you've surely ascertained that anti-histamines do bring on seizures. You're not going to get more exact data than that, not in your lifetime. And I think you're right to do your own research. There seems to be so much variation between individuals, and so much confusion, doubt and uncertainty in the medical profession, that it's the only way you're going to get any understanding.

I'm interested in what you say about sleeping. I only had my first fit last year (at 39); I've hardly dared set an alarm clock since then. Needless to say this badly affecting my working patterns. I'd be happy to hear sleep deprivation makes no difference to fits. I've been doing a little research on this site and others into sleep, and they seem to be of the view that sleep patterns are of more importance than number of hours.

I also, bizarrely, got a message from a friend who has nocturnal seizures only, who was warned against yoga because it dangerously replicates the body's sleep rhythms. It set me thinking that maybe I was wrong to totally cut out caffeine; maybe I need to maintain my morning cappuccino, create clear distinctions in my body's rhythms between night and day. Please see my Blog for further ramblings.

Gubs

dear gubs: 

my little girl is almost 17 now, and has had seizures for more yrs than i care to remember.   over the past six months, she has been having 2-3-4 grand mal seizures (with breathing arrest) per week.  we went to see her neurosurgeon over the easter break, and after having her shunt pumped manually twice, she has now gone two full wks without a seizure.  this feels like a miracle to us!  although i am not an expert on the topic of seizures, i do have some hard won knowledge gained thru experience.  one of the biggest triggers of seizures is indisputably STRESS.  so my advice to you is to drink your special coffees and pamper yourself and do these little things to feel happier and consequently...... less stressed.

burned...

Hi All,

Stress? Diet? Sleep?  I'm still confused...  My "breakthrough" seizures had been increasing recently and I didn't want to take any more Carbitrol than I had been (1200 mg/day).  The stress at work had been increasing since my project was late and the customer was screaming - so that would indicate stress for sure.

 Then... the project got completed, so the stress level went down - but the breakthroughs didn't decrease.  Because the project was completed, I started exercising more, but that didn't seem to decrease the breakthroughs either.  Then I went to the doc and we discussed trying a different drug.  He suggested Keppra XR.  I started on those while slightly decreasing the Carbitrol to 800 mg/day.  Then the breakthroughs stopped!

So, was it the combination of a stress drop along with a lot more exercise (I do a 6 mile hike up/down a mountain 3-4 times a week) and the Keppra - or just the Keppra?  I don't know, and I guess I don't care - as long as the streak of breakthroug-free days continues.  I'm a little skeptical since I've had similar long streaks for no apparent reason in the past while on Carbitrol.  If I'm symptom free for another couple of months, I'll start to gain confidence that I'm in the clear if I continue the "clean living" (lower stress, lots of exercise, and Keppra).  I guess sleep and diet dont' seem to be much of a factor...

One of the frustrations of this whole "investigation" is that I am a computer engineer - so I like to solve problems that are logical.  THIS IS NOT LOGICAL!

My problems are nothing compared to some of the other people whose stories I read in this forum - so I am not complaining (just confused).

Thanks for tolerating my rambling,

DougInSanDiego

 

DougIn...

Hi Gubs,

"Triggered Seizures" are best defined to be limited to the realm of "Reflex Epilepsies." Using the phrase "triggered
seizures" for "nonspecific precipitating factors" causes much confusion.

Reflex seizures have a prevalence of 4-7% among patients with epilepsies. One of the best known forms of reflex
epilepsy has the trigger of flashing lights as the precipitating stimulus.

Nonspecific precipitating factors include sleeplessness, hyperventilation, alcohol, drug withdrawal, etc. The
notion of "stress" being a nonspecific precipitating factor is most controversial, mainly because "stress" being
associated with possible epileptic events, is often taken as an indication of "Psychogenic Non-Epileptic Attacks"
(PNEAs), even with the "Gold Standard" of a revealing EEG.

I prefer to try to use the notion of "lowered thresholds" for epileptic events, just to shy away from the moderate
confusion caused by the phrase "nonspecific precipitating factors," and the major confusion caused by the phrase
"triggered seizures."

I stopped taking "over the counter" flu/cold medications back in the mid-1990's. Many of the products included
alcohol as a major ingredient, so I avoided them immediately. Most of the other products included ingredients
that were various combinations of chemicals that are closely related to the chemical families involved with
the methamphetamines (many states have now restricted, or limited, sales of over the countercold/flu medicines
because they are easily converted to methamphetamines in make-shift labs).

I have very frequent partial seizures, and I have clusters of stronger partial seizures about once a month. The
clusters started to result in very strong partial seizures leading to frequent secondary tonic-clonic (t/c) seizures in
the late 1980's, and growing in intensity of t/c's till late 2006. During the mid-1990's, I had many severe colds
and flu's, often enough that they coincided with my clusters of seizures quite a few times. A strong "coincidence"
of near fatal t/c's happened whenever I took over the counter medicines to relieve my cold/flu symptoms over the night.

Two of the worst t/c's involved total amnesia around the events. With one, I woke up in bed in the morning with a
swollen, bloody tongue, major concentrated bruises in many places, fractured teeth, "speckled" blackened-eyes, and
a trail of blood from my bathroom. My bathroom was a mess, with things knocked over, and pools of blood on the
floor, with my fiberglass bathtub looking like I tried to chew the edge off. The other one was worse, as I
regained consciousness on the floor of my bathroom in the morning, with major injuries again, but this time also
with "pooled" blood bruises up-and-down an entire side/back of my body (in addition to new major concentrated
bruises). With many other more moderate events coincident with cold/flu medicines, I decided to take it as a
causal connection, and to avoid such medicines. I didn't have another closely life-threatening t/c until late
2006, when a t/c resulted in injuries giving me a frontal subdural hematoma that gave me the moniker "3 Hours
2 Live."

I later found out that the "speckled" or "freckled" spots/rash was probably a version of "petechiae hemorrage."

On another forum I posted links to info sites about such hemorrage:

I think a pinprick rash might be seizure petechiae, or petechial, hemorrhage.

My worst experience with a pair of "bespeckled" semi-blackened-eyes and "pinpricked" face happened after I took
over-the-counter cold/flu medication and had a major seizure a couple hours later in my sleep. I looked
like a strangulation victim on a forensics crime show for a couple days afterwards.

A very minor case of seizure petechiae is at:

http://content.karger.com/produktedb/produkte.asp?typ=fullte...

A more severe case is at: (Valsalva retinopathy)

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2170239/pdf/v065...

A chemical/seizure induced version is at:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1294829/pdf/jrso...

Short Forensics of Petechial Hemorrage is at:

http://www.enotes.com/forensic-science/petechial-hemorrhage

An Abstract of Petechial haemorrhage following a partial seizure with secondary generalization: atypical
presentation and differential diagnosis, is at:

http://linkinghub.elsevier.com/retrieve/pii/S105913110580166...

Tadzio
http://en.wikipedia.org/wiki/Valsalva_maneuver

A pathologic syndrome associated with the Valsalva maneuver is Valsalva retinopathy.[13] It presents as
preretinal hemorrhage (bleeding in front of the retina) in people with a history of transient increase in the
intrathoracic pressure. The bleeding may be associated with a history of heavy lifting, a forceful coughing,
straining on the toilet, or vomiting. The bleeding may cause a reduction of vision if it obstructs the visual
axis. Patients may also note floaters in their vision. Usually a full recovery of vision is made.

3Hours...

Hello 3hours...Could you please explain what "pinpricked" face is...I am new to all this. Feel like I am getting the "run around" from doctors. My daily horrible headaches are only migraines and the numb "pinpricked" feeling that I  sometimes experience with the headaches is only part of the migraine. And the tremor in my right hand is only my nerves...The starring spells, who cares. The way my muscles stiffen & sometimes wake up feeling like I lifted weights or ran a marathon IN MY SLEEP..And the GOD AWFUL SWEAT from out of nowhere that turns into a GOD AWFUL cold sweat then my body is covered with goose bumps..Then the uncontrolable crying or the feeling of amazing peace..ALL MIGRAINES!! And the strobe light during the eeg brought on the tears, odd little quirks, confusion & feeling of intioxication...OOPS must have caused another one of these stupid migraines, because my doc said it was normal!! And the time my arm twisted up over my shoulder or my head bobed around oh well. Its all ok!!! Its all part of a migraine..brought on by stress sweetie.

I am not disagreeing...I may have a migraine!! But please...this is more than just a migraine. And stressed aint the word for it...Try to chill-lax learning my "warning" signs..like the unbelievable sweat that I break out in & the sudden feeling of dizziness & feeling as I am just about to pass out..my legs feel like they turn into JELLO. If I can make it anywhere to lie down...I just pray I can make it to lie down...Then as quick as it hits me is as quick as I realize how dazed & confused I am. Feeling of intoxication...

Any of this sound familiar to anyone?????

Abnormal MRA...something to do with the blood flow to a certain part of my brain & arteries looked like they were narrowing. CTA ran & came back normal. Once again..ONLY A MIGRAINE!!! God how I wished this "migraine" or what ever this is, would pack up & leave my brain alone. 

Sorry for coming across as being angry..JUST FED UP & FRUSTRATED....

angnj

Hi Tadzio, thank-you for your incredibly detailed response. I'm pained by your story, the damage. There are minor echoes in my experience, but I've come off so lightly. How do you take this thing dispassionately? Maybe you don't, what good is raging against the universe.

The medication/fits haven't affected your intellect though? Which is good. If you see my other thread, I've got serious anxieties about either my current medication, Keppra Leve-something or other, 1g (x2) per day, which seems to have hugely affected my mental capacity. Not just memory, ability to perform quick mental processes; often I find myself losing the thread in the middle of my own sentence, particularly when writing. Hopefully, it's still early days on the medication (began the medication December 2009 at 500mg (x2), increased to 750mg (x2)/day January 2010, and to 1g (x2)/day in February 2010), and what I regard as, or hope are side-effects will diminish with time. My consultant though coolly told me 'They don't know whether it's the medication or the fits that cause it'; I suppose that's the kind of view that the drugs companies would like to put out. I still have the consciousness of my earlier state, faculties, even if I can't resume them. This gives me the confidence that I can return to them. Otherwise, it means this late onset epilepsy is like, essentially, electric shock therapy, which I suppose it is in a way; I remember what I could do in my mind before, without the ability to do it.

Thanks again for your detailed response, which I will return to time and again. It will take me days to fully absorb the detail, some of it's so contradictory, and counter-instinctual; plus I have these slowed faculties.

Yours Gubs 

Gubs

Hi Gubs,

Before I forget to note, nocturnal or "relaxed-state" cases of epilepsy are more common than diurnal or "alert-
state" seizures. There are just more witnesses when a person is awake and active.

Most of my severe seizures occur when I'm calm, in a less active state. In fact, I believe that meditation reduces
my seizure threshold, and makes a seizure more likely in terms of probability during the meditation period, but
the concept of an increased likelihood must be kept distinct from a near certainity.

With my temporal lobe epilepsy (TLE), I often get aura that varies from "intense fear" to "divine ecstasy" to
"blandness" with synesthesia. It seems that many people meditate at great lengths to get similar sensations
of "divine ecstasy," while I just have to wait for my next partial seizure for the sensation, which is frequent
enough to make me annoyed with feeling "divinely ecstatic" so often. I discovered that "rebound depression"
from seizures can be often counter-acted with "stoked" sensations of intense hatred, so a couple people in my distant past
inadvertantly done me a favor without even knowing it (laugh out loud).

Info about people trying to induce these sensations with meditation and with the technology of the "God Helmet"
is at: http://www.shaktitechnology.com/

And a long video about TLE and such sensations is at: http://video.google.com/videoplay?docid=1030598948823323439#

Talk about bizarre effects of yoga and nocturnal seizures???

Tadzio

3Hours...

I think for some people seizures just happen out of the blue. For me, I have common triggers, lack of sleep, stress, caffeine and alcohol. I stay away from caffeinated beverages and do my best to drink as little as possible (I go to a lot of social events where it is basically required to drink wine) but I limit myself to one very small glass. I am on sleeping meds to get me to fall asleep, so waking up is hard, but I usually go to bed at 9 so i can wake up at 5. And stress is pretty hard to control, but I found that doing yoga/pilates really helps me unwind. Also if I feel stressed I write about it. That releases a lot of tension. I do not take over the counter medicine, even if I have a bad cold, because I don’t want to risk it. I know this probably doesn’t help, but this is what works for me.

All the best, Christine

teener

What do you mean I don't 'want to risk' over the counter medicine? Is that an acknowledged risk?

Gubs

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