Wretched Headaches?

[seizurrific]

Does anyone else here get positively wicked headaches? It started when my neuro added Trileptal to Lamictal/Keppra and they are bloody ridiculous...it hurts to even move my head. I wake up with it, it fades to a dull ache, then in the afternoon it reappears with vengeance.

The only thing that helped was Excedrin but that created a host of issues I didn't want to even think about. My seizures increased to once per *day* instead of once per month like they usually are.

Anyone dealt with this before? The pain is awful and my neurologist says its a side-effect that should fade soon (I started in late April).

 

[PFunk]

I use to get horrible headaches when I was switching from Trileptal to Keppra. It felt like my brain was being squished after having the crap kicked out of it. The good news is they eventually they faded with time (it took a month or two). I hope you have the same luck. Now most of my headaches are related to simple partials. My brain will feel like is on fire and exhausted, which is not nearly as bad

 

[Endless]

Headaches more than stink. They can make you curl up in a little ball in bed and make you miss out on life.

A great place to learn about any drug we're on is dailymed, which is a National Institute of Health (NIH) website. It has all the official package inserts.
http://dailymed.nlm.nih.gov/dailymed/drugInfo.cfm?id=11287#nlm34084-4

According to the package insert, Trileptal can cause have headaches as a side effect. I'm confused because it's 2.9% of people according to the text but 32% if you go by the table.

It also says convulsions can be aggrevated (5% of people).

Your neuro is right - sometimes side effects go away. And sometimes they don't. Use your own judgement about when you think it's gone on too long, and then call your doctor. The side effects you are having are pretty serious ones. Especially daily seizures.

I don't remember. what kind do you have?

 

[momof3boys]

I had terriable headaches when I was on Keppra. It wasnt til I switched doctors and my doctor who I am now seeing, said to try Keppra XR. Since switching, all my headaches I had before for years, are now gone! I was using excederain migraine medications, etc. The way he explained it to me was that the Keppra XR stays in the body longer, and does have the affect of a "up and down" motion that Keppra would have. Which could cause headaches to occur.

 

[Bluesbrkr]

I had some history of migraines from time to time, but they definitely increased once one seizure meds... i'm on lamictal and trileptal. I get the debilitating headaches that all you can do is lay on the bed and cover your head and hope the world doesn't touch you. I have had some good luck with fiorinal which helps shorten the headaches... Excedrin migraine helps, but not that much.

I also wake up with the tension headaches all the time now... I take advil and just consider it a fact of life, like the seizures....

good luck!!

 

[seizurrific]

There was something odd about the way the Excedrin Migraine was reacting between me and the drugs; apparently that's what was causing the daily seizures. He recommended I try another painkiller but it's like eating candy (I had a 7 year competitive running career and Advil/Tylenol are now like expensive Skittles). I've been off the painkillers because I don't see the point of taking non-prescription drugs if it's not doing anything for you but I am tempted to take the Excedrin again because even postictal headaches aren't as bad as these are. Who'd have thought anyone would ever say that?!

I have T/Cs. It's been better since I stopped taking the Excedrin but things still haven't been wonderful. I left an email with my neuro and hope he has good advice or new plans of action because like you said Bluesbrkr, right now I'm just hoping that the world doesn't touch me.

Last week I seized and hit my face on a desk (cue lots of blood and a headache so bad I actually threw up) and I thought the jarring my head took from that was probably contributing at first but as I was sitting in front of the desk it was basically a jerk into the desk instead of a smash on the desk I don't think that's a contributing factor anymore.

Keppra and Lamictal had occasional dizzy spells for me but nothing like this. The Trileptal has been creating a few more problems for me. Headaches, dizziness, etc. My neuro also recommended that I eat sh!t tons of salt. I already eat a lot of it because my sodium levels are naturally low and my blood pressure is so low that the nurses think their equipment is malfunctioning (and by already eating I mean I will literally take a salt shaker, shake salt into my finger and toss it back like a shot of vodka and I often drink salt-water or eat ice-cubes sprinkled with salt....it totally grosses people out). I get blood draws regularly and eating that much salt really does make things normal (I was totally convinced I was screwing things up by eating That. Much. Salt. but apparently I was an even keel after those measures).

I'm seriously considering just taking the Excedrin. A seizure, seriously, would be better than this.

 

[MaryK]

Seizurrific.. so Excederin does lower your threshold? I am confused, but thats okay I am on phenobarbital and that comes with the territory along with getting older.

Anyway... I had migraines almost my entire life until menopause and when I was pregnant. Migraine along with epilepsy runs in my family. My Great Aunt had horrible migraines as well as my father, grandmother, etc. She had a few remedies that on occasion would work. Country remedies I guess. I also used to get cluster headaches about 6 times a year and these remedies did not touch them.

1. Put a warm heating pad on your abdomen along with a cool wet washcloth on the back of your neck and over the eye of the side your migraine is on.

2. Eat a few potato chips... the salt.

3. Eat a small piece of raw potato.

4. Have someone massage your feet... from reflexology probably. My husband would do this and sometimes it would work... he had no real technique.

Maybe worth a try

Bluesbrook.. that sounds so familiar.. I remember being really little and just laying my head on my mother's lap, but when she would pat my head or pull my hair away from my eyes it would hurt so much more...

Hope you are feeling better by the time you read this.

 

[Bluesbrkr]

You should check with your doctor about fiorinal... it is pretty good stuff. not addictive painkiller like perocet or anything. Kinda heavy duty excedrin. Primary ingredients are aspirin, butalbital, and caffeine. I haven't had any problems with it affecting frequency of my seizures, but different people react differently. Besides the epilepsy, I'm pretty certain I'll suffer from some kidney disease from all the advil and pain relievers...

I had a lot of the same problems when I started trileptal. Dizziness big time for a while. headaches... trouble with short term memory (not that it's ever been that good). But those side effects have gotten better. I do have to eat a lot of salt also. Thought about installing a salt lick on the counter and just dragging my tongue on it when ever I pass it.

Hope it gets better for you my friend...

 

[Endless]

Just a thought. Migraines are highly comorbid in people with epilepsy (migraines can go along with epilepsy). Some of the "auras" or "pandromes" for migraines look exactly the same as a simple partial seizure, like speaking all garbled or not understanding others, confusion, visual hallucinations (like shimmering lights), etc.

Painkillers of any kind more than twice a week can cause rebound headaches, including rebound migraines. It could be rebound migraines and their seizure-like symptoms that you are experiencing when you take excedrin.

So it could be seizures, could be something else. Your neurologist should be able to tell the difference.

 

[RachelinAZ]

I have never been told this before... I get migraines and I never know what brings them on. And some are doozies. If I don't take Imetrex quick enough... We did a cat scan on my face/head and nothing "abnormal" (mine feel like they are sinus headaches {most of them start this way}).

If I even remotely feel one coming on, I use imetrex up the nose. Once in a while, I need a second one, if the first one doesn't fully take the pain/feeling away. But I wait 2+ hours before taking it.

Just a thought. Migraines are highly comorbid in people with epilepsy (migraines can go along with epilepsy). Some of the "auras" or "pandromes" for migraines look exactly the same as a simple partial seizure, like speaking all garbled or not understanding others, confusion, visual hallucinations (like shimmering lights), etc.

Painkillers of any kind more than twice a week can cause rebound headaches, including rebound migraines. It could be rebound migraines and their seizure-like symptoms that you are experiencing when you take excedrin.

So it could be seizures, could be something else. Your neurologist should be able to tell the difference.

 

[MaryK]

Hi Rachel... here is a list of food triggers for migraine and a few tips. Tannins were huge triggers for me as well as MSG.

http://today.msnbc.msn.com/id/21596...unding-diet-tips-stop-headaches/#.T6yx_R-0auI

http://www.healthhype.com/migraine-headache-triggers-foods-diet.html

 

[jayde-101]

Yea.. you want to be careful with taking painkillers

Hi
Like mentioned previously if you take any pain killer regularly even if its just paracetamol you do get a rebound effect.

A rebound effect is where the body shows signs that you still havea bad headache when in fact its your bodys way of saying i have fixed your head please stop feeding me pills

you get the same effect with taking decongestants ..it will fix your stuffy nose then block it again if you continue to take it ...

May be you could try them migraine cooling strips or a college flannel on your head

well any way i hope it gets better soon
jade x

 

[Bluesbrkr]

Just as a clarification... I only take the pain meds for the really bad ones... maybe once a month. so I've never had a problem with the rebound effect, but you are absolutely right jayde, you definitely get the rebound effect if you continue to use them.. thanks for sharing.

 

[RachelinAZ]

Yikes! A lot of those I could mark off.

I do know when I had at least 3 (over two years or so) , I have complained of a blinding headache. We've never tied the two together....

 

[RachelinAZ]

I have one coming on, behind my neck and in my sinuses, up into the front of my head now. I know it is stupid, but I am debating on taking an Imitrex because I only get 12 a month. Sometimes I have more than 12 migraines (or feel one coming), other times, I don't.

 

[Bluesbrkr]

Hope you are doing ok, RachelinAZ... sucks when they start building up and you know it's coming. Tough to judge how far it's going to go. Sorry that you have so many a month. That's miserable. Hopefully it passes quickly...

 

[RachelinAZ]

Thanks, It (thankfully) went away w/sinus medication (not the Imitrex) and tylonal. I always try that first, since I only have so many Imitrex a month. I am good to go today. First time in a long time, nothing has hurt :rock: :roflmao:

Hope you are doing ok, RachelinAZ... sucks when they start building up and you know it's coming. Tough to judge how far it's going to go. Sorry that you have so many a month. That's miserable. Hopefully it passes quickly...