Seizure/Migraine Diary

[daisy.girl]

I have been keeping track of my seizures and migraines in a daytimer since June.
I have an appointment tomorrow with my Neuro, so I was going through and doing a talley on the number of seizures and migraines.
June-11migraines and 11 seizures
July- 10 migraines and 9 seizures
Aug- 10migraines and 10 seizures
Sept-13migraines and 13 seizures
I am amazed at the numbers being the same?? They did not always occur on the same day.....many times the migraines were on days after a seizure. So I guess because they were not always on the same day, I didn't see such a correlation.
Do you all think this means that my migraines are directly related to the seizures? I am unable to tell yet if any AED helps, because I have only been on them (3 different ones) for a short period of time because of allergic reactions.

 

[Endless]

Hi, Daisygirl,

My migraines are postictal. They happen after seizures. They usually don't hit right away. Right after the seizure I just feel cruddy, head feels heavy, neck hurts, a bad headache starting. The headache keeps getting worse and a couple of hours later, there's the migraine. Or maybe it's just a small migraine turning into a big one, I don't know.

My migraines finally disappeared when I got up to a theraputic dose of Trileptal and my seizures stopped. Trileptal is one of the AEDs that doesn't prevent migraines, so I know it wasn't that. Unfortunately I had to go off the trileptal due to side effects. Now I'm ramping up on Lamictal.

I forget - what kind of seizures do you have? If you have the kind where you hit your head, migraines could definitely be later on. Also, there may be a seizure trigger causing your seizures that also triggers your migraines, there's just a delayed reaction. Do you see any correlation in your possible seizure triggers?

Another thought - do you take any kind of medication other than your seizure meds? If you take some pain medicines they can cause rebound headaches.

If you are seeing a 1:1 relationship between seizures and migraines, even if the migraine is the next day, there may be a relationship. I would definitely bring it up to your doctor.

 

[RobinN]

They look very cyclical to me. Migraines are now classified and related to seizures. So yours appear to be related to me. That is the conclusion I would make.

Any chance you have also tracked your TOM?

 

[daisy.girl]

thanks.....

I have simple and complex partials.

I have tracked my TOM and yes, I have a migraine and seizure during that week, but I have them all the other weeks too. Like 3 per week of each. So, I don't know if that makes a difference.

I have not been able to put my finger on any specfic triggers, but I do know that some food/spices are triggers. If I go out to eat, I can sometimes feel a migraine coming on soon after eating.

I do take other meds.....some for Multiple Sclerosis, muscle relaxers, I also have B12 def, so I do injections, as well as Vit D def, take supplements, and magnesium supplement.

 

[Cint]

:agree: with Robin. They do look cyclical to me, too. Migraines and epilepsy are cousins, so you do need to mention this to your dr.

Present this to your dr.:

http://professionals.epilepsy.com/page/migraine.html

 

[Endless]

Great link, Cint!!! I dug right into it.

Hey, Daisygirl, this is some of the info. I'm thinking if your migraines are postictal and they start with a slight aura for say, 24 hours, and then it hits, this would make sense.

The duration of postictal headaches was:

less than 6 hours in 81%
6 to 12 hours in no patients
12–24 hours in 11%
more than 24 hours in 8%

And some science-speak:

The mechanism of ictal and postictal headache is uncertain. In recent years, the theory of migraine pathogenesis has focused on the trigeminovascular system. Activation of this system gives rise to neurogenic inflammation of cranial blood vessels and pain.44 In animal models, Moskowitz and coworkers have shown that seizures activate the trigeminovascular system, providing a potential mechanism for the associated headaches.

http://professionals.epilepsy.com/page/migraine_headache.html

Who says an activated trigeminovascular system has to create pain NOW, why not a day later? Maybe it can increase over time, as opposed to being an instantaneous event?

I am very curious what your neurologist has to say about your migraines.

 

[daisy.girl]

thanks again guys....great links

I have I guess what you would call Auras...heavy neck pain /pressure, lightheaded, dizziness, unable to complete sentences, and just confusion. Also, I guess I need to write down the time of my seizures and migraines....because, looking back over months now, I can not recall how quickly I had a migraine after a seizure. I really hadn't been looking for a correlation, so I would just write migraine or seizure on the date....but no time frame.

Going to bed now....I will let you know what the Neuro says tomorrow!

 

[daisy.girl]

I am back from my Neuro visit.....and yes, they think there is a direct correlation with the migraines and seizures.
I am starting Lamictal XR today.....so please pray I have no allergic reaction to this AED. I have been allergic to 3 so far.
The Neuro was hesitant to prescribe lamictal because of the common allergic rash reaction to it.....they told me to just watch carefully and any sign of rash or swelling to stop it immediately and call them.

 

[Endless]

Daisygirl,

The first time I was on Lamictal I developed a rash, so they took me off and started me on another drug. The rash developed while I was only on 50mg. My doc had started me on 25, 50 the next week, and so on and so forth.

Well, we are retrying lamictal. This time he had me going slowwwwwww...
start w/25mg for 2 weeks
50 mg for two weeks
75 mg for two weeks
100mg for two weeks
Then up 50mg per week after that.
And so on and so forth. You get the idea

I was worried so I cheated and started out slower and lower, at 12.5 mg. The 25mg tablets were so tiny, it was hard to use the pill splitter. I felt like I was spitting the head of a pin. I don't know if you can split the XR version, though.

Going up very slowly worked. I got a brief rash around 50mg again, but I knew how to take care of it from last time when I had seen a dermatologist. This time the rash went away within a week or so. If it was worse than last time I would have called in, but all is well. Now I'm up to 250, and doing okay.

Were you taking brand name or generic before? I had generic the first time for the first few weeks and was rash free until I switched to brand name, then I got a rash. I was on generic all the way this time around and got a much lesser rash. Though we ramped up much slower. I think sometimes we are allergic to the binders in some tablets, and it isn't necessarily the drug at all. Although Lamictal is infamous for rashes.

What is the ramp up schedule your doc has you on?

Good luck. i really hope this works for you. Lamictal is the first drug that has left my thinking ability and memory relatively intact. I noticed the difference right away.

 

[daisy.girl]

I was on generic topamax, generic zonegran, and brand name Keppra.

Today, I was given brand name Lamictal XR tiratation card. It is 25mg for 2weeks, 50mg for 2 weeks, then 100mg.
However, the Neuro was great, and told me if I go up and do not feel as well, I can go back down to the lower mgs for a while. Also said if seizures stop we will stop at that mg.....even if it is only 100mg. That made me very happy.

I had a terrible migraine today....they also gave me a shot of Toradol to help with the pain.

Question? When I came home, I checked with my insurance company about the price of the Lamictal. Well they want me to use the generic.....so the price of the brand name is four times that of the generic. So, I am going to have to use the generic.
If I start on the brand name XR; am I going to have a problem going to the generic non XR in a month?

 

[Nakamova]

That's a tough one. Almost universally for people with epilepsy, the generics are too unreliable because they can contain far less of the active ingredient, and are inconsistent from batch to batch. If you aren't particularly sensitive to variations in dosage level, then you MIGHT be able to go from the brand XR to the generic XR, but I wouldn't recommend it.

I know cost can be a big stumbling block. Try this link for info on getting payment assistance: http://freemedprograms.com/free-Lamictal_XR

 

[Endless]

Is there a generic version of lamictal XR now? I thought there wasn't. Only brand name. Have things changed? If not, is the insurance company asking you to take the generic regular release version?

 

[daisy.girl]

I too am not aware of a generic XR version....
and yes, I am saying that the insurance company would have me on the generic regular release formula.
BUT....today the Neuro gave me a sample card of the brand name Lamictal XR for 5 week titration schedule.

 

[daisy.girl]

thanks for the link about prescription drug assistance. it sounds like you have to be uninsured to use it.......I did find this for Lamictal XR though.


It is $40.00 dollars off your prescription for up to 12 refills. hopefully it will work with my insurance.
http://www.lamictalxr.com/index.html

 

[Endless]

Daisygirl,

My insurance company will reconsider their policies on a case-by-case basis. Maybe yours will, too. It wouldn't hurt to call and ask. My insurance requires a letter from my doc on why I need a brand name, and why the generic doesn't work for me.

The insurance companies never tell us that in their literature, or even online. But they will say if you can do this when you call.

 

[daisy.girl]

They look very cyclical to me. Migraines are now classified and related to seizures. So yours appear to be related to me. That is the conclusion I would make.

I have heard on this site numerous times that migraines are now classified as seizures....but I am unable to find any definitive information about this. I can find lots saying they are comorbid, that they have similar symptoms, dizziness, nausea, confusion (memory issues), etc...

Does anyone have articles on migraines being classified as seizures??

 

[Crystal11]

I found it interesting for me personally to learn more about my migraines and seizures. I never knew I had migrains since I only would have two or three a year which I thought were colds or sinus headaches or whatever. I had no idea until they got worse that something was up. I even was seeing a neurologist that is more specialised in epilepsy but also was a headache specialist as well and I never mentioned it to her when I should have.
Sometimes I have headaches or migraines rather after a seizure and mine are complex partial seizures. I don't know why it happens afterwards but it does. I normally sleep after a seizure espcially if I've walked around. my legs feel weird and sort of burn- if that makes any since lol. Anyway- I get tired and sleep and I think i've slep through the headache by the time I've woken up.
I had a migraine that lasted 4 days and I was just about to go to the ER and decided to wait 30min and if nothing changed, then I would go. It did change and I forgot what all I did differently but it went away and I was most happy! Once that happened, which was frightening to me, I went to my first neuro appointment and was diagnosed that day even though I knew almost nothing about migraines. Just maily focused on my seizures because they weren't controlled well.
Now that my seizures are in better control, the migraines are not being nice. Having 2 or 3 migraines a month is just not happening! So later this month I will be discussing this more to figure out what all needs to be done or more tests or whatever.

I am sorry Daisy that you're having so so many seizures and migraines in one month! That is a lot and I think I would be screaming and get upset at my next appointment!
Its good that you're keeping a journal.
I found one for migraine journal from the app store and I love it! Its basic and easy to use and you can email a full report to yourself or to a nurse or neuro etc.
Then I've got one for SeizureTracker.com and its a mobile version of their website which is nice to keep up with seizures quickly. That can be made into a report as well.

 

[Endless]

I think you are right. Not even the NIH (national instutute of health - the U.S. government) says migraines are seizures:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2824867/

Migraine and epilepsy are both chronic neurological disorders characterized by recurrent attacks, which are often found as comorbid conditions. The comorbidity of migraine and epilepsy has been reported with the frequency of migraine in the epileptic population ranging from 8% to 15%.1 Headaches are often recognized as a part of symptoms of epileptic seizures. The characteristics of seizure-related headache (SRH) have been reported in many studies.2-12

Though they did say they can be comorbid. (happen together)

Definition of comorbid:

In medicine, comorbidity (literally "additional morbidity") is either the presence of one or more disorders (or diseases) in addition to a primary disease or disorder, or the effect of such additional disorders or diseases.

http://en.wikipedia.org/wiki/Comorbid

 

[daisy.girl]

thanks endless....
that is the exact information I keep finding too. BUT, many people posts on here repeatedly saying that migraines are now classifed as seizures or in the seizure family.

 

[Endless]

Yes, I agree. I think that is innacurate.