Unusual Triggers – Epilepsy
When I was diagnosed with epilepsy almost nine years ago, I had no idea what to expect. I had a field as far as the eye could see of learning do. The doctor who slammed down the hammer upon my life, the unimaginable word that for as long any of us could foresee, the condition sending bursts of electrical activity throughout my brain. I was never informed of the typical triggers that could cause a seizure. That I discovered for myself.
Typical Seizure Triggers:
- Sleep deprivation – Overtired, Not sleeping well, Not getting enough sleep
- Caffeine
- Not eating well/Low blood sugar
- Associated with menstrual cycle (women) or other hormonal changes
- Stress
- Alcohol
- Flashing/Flickering bright lights or patterns
- Fevers or other illnesses
- Missing medication dosages
Over the eight years having lived with epilepsy, avoiding these triggers became a requirement within my lifestyle. Opting for a much more healthier, peaceful way of life in order to overcome seizure activity as much as I could.
My Requirements To Best Avoid Seizure Activity:
- Sleep at a decent hour each night
- Avoid any and all caffeine
- Eat healthy, nutritious foods
- Exercise and stretch during menstrual times of the month
- Avoid stressful situations as best as possible
- Avoid any and all alcohol
- Avoid any and all flashing/flickering bright lights and patterns
- Rest well and eat well when not feeling well
- Drink plenty of water
- Avoid prolonged periods of heat exposure
- Both my husband and I have synced alarms on our phones to remind me to take my medication on time every time
However, interestingly enough within the almost nine years that I’ve lived with epilepsy, watching and observing my seizure activity closely, I’ve come to take notice that there are in fact unusual seizure triggers. Yes, there are other things in this world that do indeed set off seizure activity you wouldn’t find anywhere on the internet and that would most likely boggle even your neurologist. Now, not everyone is affected by these unusual seizure triggers, as everyone is different. Was I surprised to discover my unusual seizure triggers? You better believe I was astounded! Even sharing with my own neurologist, his eyebrow shot right up. What are these unusual triggers?
My Unusual Triggers:
- Anything containing mint
- Anything spicy
- Anything containing red dye
- Overexerting myself exercising
- Certain styles/sounds of music
- Weather changes
It’s a good idea to keep a seizure journal and document your seizure activity to the best of your ability. The more you know, the more you’re able to fight back against your epilepsy condition. Every detail counts. Every detail matters. Avoid your triggers at all costs.
Do you have unusual seizure triggers? Share yours in the comments below!
Tiffany Kairos
I am a happily-ever-after wife, an Epilepsy Diagnosee, Advocate for Epilepsy Awareness (The Epilepsy Network), life lover & Christ inspired! Life is a journey and I'm loving every moment of it. Even the bumps in the road!
49 Comments
Gregory V Villarreal
I noticed that the times I’ve had a seizure corresponded with the times I’ve had a Dr.Pepper. Weird, so of course I avoid it now. Also, extreme heat and hot showers seem to trigger me as well in the past. I’ve been taking CBD oil and Moringa lately and its seems to be working well for me. I could go into detail about all kinds of related issues I’ve noticed but I’ll keep this brief. Thank you for this blog, I really appreciate it.
Carrie Stiffler
Spicy peppers/ ginger/msg. Neurologists don’t believe me. Diagnosed w pseudoseizures and my license is revoked until a psychiatrist will sign my forms. Can’t find a doctor who will take me on as a patient.
Neurologists need to investigate and do more clinical studies on “strange” triggers. They are very real and it is unfair that seizure prone individuals get stigmatized and can’t be treated.
Megan
I have noticed that I also react to peppermint, mint, and eucalyptus. I’m not sure why, except that I’ve always found those sensations to be extremely intense. I also have seizures when there is If I’m exposed to certain allergens, like mold, cat hair, benadryl, and sweat (yes, it’s a real allergy). I also respond to other changes in my body like blood pressure changes.
Shannon
Changes on weather are my worst trigger. My body knows days before a weather change and let’s me know with increased and more intense seizures though I don’t know why until the weather change actually happens. I have to be careful about what music I listen to, especially when trying to find something relaxing… I can’t listen to anything with drums, flutes, trumpets binaural beats as I go to into seizures within minutes. I didn’t know about the trumpets until this summer until I heard a trumpet band and within minutes I was having a seizure. Someone to that was calked a musicogenic seizure. Thank you for your post. Some of the other triggers I didn’t know others besides me shared, it’s nice to know I’m not the only oddball, lol.
Danielle
My son is 5 and was diagnosed when he was 3…… Wwith myoclonic a static epilepsy which.is when.they.have a combination of seizures.and how quick.they r.After monitoring how many net carbs he.has and eliminating pasta…. Its clear carbohydrates trigger his.seizures
Christina Tsokos
Wow, as a mom of an epileptic 16 yr old, I am so sorry you all have to experience this!
Tiffany Kairos
Hi Christina –
No need to feel sorry at all. 🙂 There have been many blessings to come out of this and I count them every single day. I trust God has a plan.
Christina Tsokos
Tiffany , I am happy you have found peace in a higher being.
Brett
Being in sun in long time , excerising are ones I been noticing lately that can bring seizures on . Weird Because everyone says Exercise is great for you for epilepsy
Mayra
I was diagnosed with epilepsy since I was 2 yrs old I’m 27 yrs old I was not born with it. It’s caused by a parasite. My doctor always believed I would grow out of it as well and I had that hope but 25yrs later I don’t. I had a seizure last month I don’t remember why but my husband says that I was crying about how stressed I was at work. I’m a new mom don’t get much sleep and I just returned to work and my boss doesn’t seem to happy that I took 4 months off so I’m pretty stressed.
Pam
Chocolate and change to cold weather are two of my triggers.
Brucke
Typing/ computer use for extended periods ( but not portable devices like android) and word games like Scrabble, Scrabble is almost a guaranteed seizure.
Mayra
I agree two years ago I had a seizure from playing on my phone to long and not getting enough doesn’t help either.
Rhonda
-Soy and anything containing any form of it (soybeans, edamame, soybean oil, soy lecithin, MSG, soy protein isolate, soy flour, tofu, soy milk, the list goes on and on, and it’s found in seemingly e.v.e.r.y.t.h.i.n.g!). And all beans. Sometimes peas.
-Wheat, barley, oats, rye.
-Casein (all cow dairy). Things that are particularly high in casein are Parmesan and cheddar.
-Nuts.
-Artificial sweeteners.
-Red meats or any meat in anything but small, infrequent quantities.
-Red dye.
-Lights (emergency vehicles at night; fireworks) make me feel ‘off’ so I avoid them, but I haven’t had a seizure from them.
-If I get up early in the morning, even if I’ve gone to bed early and had a long, restful night. This is the one that people believe the least. They think I just want to sleep in late.
-Obviously any medication that lowers the effectiveness of my seizure meds.
-Ovulation.
-Lack of sleep/early mornings/menstrual cycle/taking meds that reduce the effectiveness of my meds/consuming soy –> these things have been the cause of 99% of my seizures.
Carol
Soy also triggers seizures for me. It is very frustrating because as you said it is in almost everything. I have become quite the label reader when I grocery shopping and try to avoid anything with soy in it. I became aware of this when I would drink Ensure to help supplement my diet. A day or 2 later I would have a seizure. I also have to avoid anything with red dye or any dyes. I have also started eating gluten free foods and have cut down on sugary foods and sweets. It seems to help. Weather changes, overworking myself without a break, too much time on the computer and reading too much can also trigger a seizure for me.
Cassie
being over heated (as you in exersizing, over doing it) but i have had seizures just from the summer heat of michigan
Paula
Artificial sweeteners (I actually think they can bloat me)
My biggest issue is gas. If my stomach is rolling (for ‘any’ reason), it will make my head react. A small unnoticable aura can turn into a complex-partial. I used to notice similar issues before my cycle.
Tori Mavromanolis
Yeah I have some unusual triggers
Um…
Sometimes scenes from certain movies/or ones that I haven’t seen in a long time.
Certain sounds it could be from the radio, tv, even sometimes from people talking around me.
There’s also…
sugar
Smells
Sometimes tastes
Even sometimes memories.
angie lynch
I Tend to get auras when doing something consistent for a while like sewing or typing. Also steam from hot showers.
And Florescent lights! I have to wear a hat if im under florescent lights. Other triggers as well but more common.
Kenya
I’ve had epilepsy for 21 years. I had no idea that pregnisone would be a trigger. I had been seizure free for three years but got poison oak thus needing a prescription of pregnisone to clear it up. After the seizure, I researched pregnisone and saw how it effects your hormones. I’ve known hormones to be a trigger for me. I hope this will help someone else. I trusted the health provider to know my background enough not to put me on something that would conflict with my epilepsy, but I think it was overlooked.
Tiffani Hicks
My daughter has a seizure if she changes temperature from cold to hot. I guess her body can’t adjust to the change fast enough.
Nicholas williams
I do to weather change
Bex Burgess
Hi there, very interesting as my 12 yr old daughter hates when she can smell people around her having mint chewing gum and strong smells, she cant have sudden change in temp of her body eg… weather or swimming while winding or cold water, she cant get pins and needles and cant feel vibration like filing her nails or a motor bike. She is on three medications at the moment. I hope you are going along well x
Lorye Glass
Thank you for the info. My daughter is 16 and was diagnosed in Febrtuary. Most information is super technical or cheesy inspirational. It’s good to hear good plan stories from good plain people.
Ashley
My triggers are being in the shower amd washing my hair and drying my hair. I’VE been thinking my seizures must be in the area of the brain that controls those movements. My neurologist has not been able to figure out why these activities cause my seizures. Thankfully it only happens once or twice a month.
Andi
My son’s unusual triggers are lightning, thunder, anything with red dye, anything with concentrated sugars, artificial sweeteners, nightshade vegetables (potato, tomato, eggplant, bell peppers and chili peppers.
Robert Clark
Too much loud music…..and I play drums……go to concerts. I make sure to take meds right before……works every time……but if I forget …..goodnight nurse.
Gillian Lambe
Repetitive sounds, e.g. beeping, buzzing, tapping, certain music – supermarket scanners at the till can set me off, with their beeps! I don’t use self-serve anymore that’s set me off numerous times, & people can get very grumpy (& staff haven’t a clue!) . Certain essential oils are inadvisable for people with epilepsy, particularly those that are supposed to stimulate your mind/brain, e.g. sage (clary sage is fine); rosemary; & hysopp (latter rarely used & wouldn’t recommend it generally). I am a fully qualified (proper, none of the ‘online diplomas’!) Aromatherapist/reflexologist/ massage therapist wth ITEC diplomas. ALWAYS check contraindications of essential oils before use if you have a health problem/condition/especially if pregnant (many can cause miscarriage); just because they’re natural doesn’t mean theyre safe to use! (Arsenic is natural!).
Alyssa
That’s interesting about the beeping, buzzing, tapping, etc. My husband is *constantly* tapping (he doesn’t even realize) & I have to tell him that he’s driving me nuts. Whistling is another one for me. My daughter also has epilepsy-she was diagnosed at 7, is now 11…but from the time she was an infant, she would SCREAM if anyone used an electric toothbrush, electric can opener, or anything else with that sound. They didn’t scare her, she just couldn’t bear that particular noise.
Christina Tsokos
Hi can you tell me what kind of epilepsy you and your daughter has?
Tiffany Kairos
Hi Christina –
I don’t have any children yet. However, I have absence, complex partial and grand mal seizures. In my particular case, this is what’s known as Refractory Epilepsy.
Christina Tsokos
Thank you Tiffany!
Alyssa
Christina,
If you were asking me, I have treatment resistant primary generalized tonic clonic, and my daughter has very well-controlled absence.
Christina Tsokos
Hi Alyssa, thanks for the response. What are primary seizures?
Alyssa
Primary Generalized means it affects my whole brain at the same time, so I don’t have a focal point like people who have Secondarily Generalized seizures. In that type, the seizure begins in one part of the brain, but spreads to affect the whole brain.
Christina Tsokos
Ok sorry… yes same type as my daughter. She has Juvenile Myoclonic epilepsy. But her one is generalised (primary). Any luck with your meds?
Gina
I was diagnosed five years & thought I was the only one who can’t handle repetitive sounds. I live in an older home and as water runs through the pipes they often make a screech/scream sound, if it goes away quickly I am okay. If it lasts more than 30 seconds I am bound to have a seizure. I have found I become fixated on the ceiling fan and strangers voices when they are talking a lot.
Keith
I’ve been an Epileptic since 1960 when I was 3 years old. I was not informed that I had Epilepsy until I turned 16 because the doctors hoped that I would grow out of it. I was blessed by getting a great Neurologist who has worked with me since 1980. With his knowledge and excellent knowledge of pharmaceuticals I had not have had any seizure’s since 1988. I’m allowed to drive and lead a normal life thanks to him. I’m still taking medication (Phenobarbital, Kempra & Dilantin) to control me from having seizures. I hope that you have been blessed as I was.
Christina Tsokos
Hi Keith, can you tell me what kind of epilepsy you have? My daughter has juvenile Myoclonic epilepsy.
Michelle
Same here with music. If it has a very prolonged repetitive strong beat, or overly repetitive lyrics it can trigger seizures. Especially if I’m overtired, stressed or hungry.
Brandi
Hot water, overheating, exercise, I am working out, excessive activity without taking a break, (house work and organization etc) are many of the unusual triggers for me.
Rose Savage
Excessive heat and weather conditions
Alyssa
I’ve noticed over the past couple of years that when there’s a weather ticker going across the top or bottom of the TV screen & the movement of the show is going in the opposite direction, I have to look away because it makes me feel dizzy/lightheaded, and nauseated. I’m fairly confident that it would cause a seizure if I kept watching.
Nicholas williams
Weather triggers my seizures crazy I know but true
Tiffany Kairos
No that’s not crazy at all Nicholas. I know exactly how you feel. Weather triggers my seizures as well. Gray, cloudy, snowy, rainy, stormy days set off my seizures. Warm sunny days and I am mostly A-Okay.
Nicholas williams
Yes everytime most of time im. Fine unless I get to hot
Emily
That’s so weird! I thought I was the only one! For me, it’s extreme cold. I have lived in WI for several years, and whenever the temperature dips, my seizures are so much worse. I normally stay indoors or bundle up like crazy.
Laura
Hi Tiffany…
The weather patterns you listed are all sun deprived. I am curious if you are vitamin D deficient. Or, could it be something similar to that, causing the seizure? Have you done a test that shows if/what your body may be lacking?
Tiffany Kairos
Hi Laura –
I thank you for your observation. Do you work in the medical field? No worries, I’m not Vitamin D deficient. 🙂 Outside of epilepsy, I am quite healthy.