Side Effects: Migraines?

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Hi all,

I'm new to the forum, just seeking some support as I just had my first ever episode 2 weeks ago. I had a series of small seizures (4 total) in one day, spent 12 hours in the ER getting tests done. MRI, Cat Scan, blood tests, etc all came back normal, but my EEG showed some abnormal activity in my left frontal lobe. As a result, I was set up with a (really, really great) neurologist who got me started on meds.

I am still a bit skeptical as to whether I really need such serious medication as I am 28 & never had an episode before. I am 99% positive that it was stress related, and have been trying to manage my stress ever since. But my doc is the expert and I have no reason not to trust him.

I am on week 2 of titrating up to the full dose of Lamictal, which will be my primary medication. Until I reach the full dose, I am supplementing w/300mg of Dilantin. Dilantin has NOT been my friend, ever since they gave me an "attack dose" of the stuff via IV (1000 mg) in the ER. it hurt so badly that I demanded they stop it after only 200 mg, and gave me the rest in pill form. A couple of days ago I was finally starting to feel normal, even after taking both meds.

However, I have noticed in the last week that I have had 3 migraines. I have had migraines before, but not in several months. I cannot believe that 3 in a week is a coincidence. While I have read online that Lamictal may in fact be used to TREAT migraines, and that headaches are a side effect of both meds, I cannot find anything saying that either Lamictal or Dilantin cause an increase in migraines. And yes, these are definitely migraines: shooting pain in one side of my head, in my temple/behind my eye, and nausea to boot.

I am already fed up with the crappy side effects (I blame the Dilantin especially). Has anyone else had this problem?
 
Welcome LMTNT

I'm surprised that you're being put on more than 1 medication to start rather than find one that might be more effective for you. Personally I would find a new neurologist.

I honestly believe that medications can help our epilepsy but I also believe that certain doctors tend to over-prescribe both dosage or number of AED's. I would definitely question that action & don't feel that you have to stay with doc. There are others out there.

I have had doctors that didn't care if the side-effects turned me into a drooling zombie (which they did). I was on Mysoline, Dilantin, & Tegretol for years. Later they changed the Dilantin with Valproic Acid. It was obvious that in their eyes me being functional was secondary to stopping my seizures. Always make sure that the pills you're taking are helping you function better in life & not doing the worse :twocents:.

I've also moved your post to the foyer so that more people can see it & you get more of a welcome. In the meantime, get comfy & check out all the different rooms we've got. There's even a "Padded Room" where you can vent your stresses & angers.
 
Thanks epileric. He only has me on two because the Lamictal won't be effective until I've ramped up to the full dose, so the Dilantin is a back-up until I'm up to the full dose of Lamictal.

My quality of life has really gone downhill since I've started the meds. In addition to the migraines, I've had nausea, dizziness and fatigue. As a result of these medications basically ruining the life I knew & love, I have become depressed and stressed out to no end. I have a call in to my doc right now to see if I can't go off the Dilantin; I'd rather take my chances w/another attack than go on living like this.
 
You say it's your doc who prescribed the meds. Is it your GP or a neurologist.

If it's your GP I would you see a neurologist as they specialize in the appropriate field.

It also doesn't make sense to me to put you on a 2nd drug until your levels of the first drug are up. Wouldn't you have to titrate up the 2nd drug (dilantin) as well? You also won't know how the 1st AED effects you if you've got a 2nd AED in your system. To me it just sounds like an excuse to use more than 1 drug.
 
I am seeing a neurologist. The Lamictal needs to be administered gradually in case it doesn't take well, and takes several weeks to be effective. The Dilantin is fast-acting (hence why they gave it to me in the hospital as well as an RX). He does not want me on Dilantin long-term, but wants me on something until the Lamictal can do its job. He thought Keppra was too strong given my circumstances.
 
I hope it works for you. I've never taken lamictal and am not too familiar with it so he might be right, it just sounds odd to me to do things that way.

I'm sure in a while we'll get more opinions from a lamictal user or 2.

He is right about Keppra though. Not everyone gets bad side-effects from it but it seems those that do (myself included) get them very badly.
 
I come from a different perspective. My daughter had not had any symptoms in her 14 yrs. Then she was hit with two Tonic Clonic seizures. She also was put on meds right away. I was given misinformation at the time by the neurologist. I have since learned otherwise. The quality of her life spiraled downward. She was in high school at the time.

Two years later and a TON of research, I found connections to my daughters symptoms, before and after, that made me realize that perhaps medication was not the route we should be taking. I have been able to show the doctor that by doing neurofeedback, and making nutritional changes, my daughters seizure control is becoming controlled. She was having 6 per month while ON meds with horrendous side effects. Now she has gone 6 months without any seizures and she is OFF meds.

It is difficult to find doctors that will support you when you try alternative therapies, but they do exist. Rebecca is now 18 and has a team of a PCP, a nutritionist MD, a endocrinologist, a GI doc, and two neurologists. For the most part they seem to trust my instincts, but then again, I have a journal of 4 yrs that proves we are improving, and that is the result that they want to achieve. They can't argue it. I am keeping her out of the hospital, and keeping costs down, since I pay for all of the nutritional changes and suppliments.

If I had to do it all over again, I would look at nutrition as a first therapy, rather than as a second thought. I have posted info all over this forum, if you want to spend your weekend, seeing if any of it makes sense to your situation.
 
Hi, Lilmiss,

Welcome to CWE!

I'm so sorry to hear about your seizure. The time after I was first diagnosed (about 9 months ago) was a really confusing and scary time for me. The people in here helped me get through it by providing the information and support that I needed. I'm really grateful to them.

If you had abnormal activity in your frontal lobe, the doc probably did the right thing. I think he's just trying to prevent you from having more seizures. The fewer you have, the better the odds are the medication will control your seizures and you will be seizure free for life. They catch you when there are minimal permanent changes to the brain. The seizures that are untreated for years tend to be the intractable (untreatable) ones. Not a hard and fast rule, but things just lean that way.

I was on 2 drugs while I tritrated up on Lamictal, too, because it just takes so long to get the dose of Lamictal up to a decent level. I'm still ramping up my dose. I was on Trileptal at the same time, but went off before my doc wanted me to (it's a long story).

I used to have daily excruciating migraines. Through keeping a good seizure diary I eventually learned that my migraines were postictal (happened after seizures). It was pretty much a 1:1 relationship. I knew it wasn't my medication preventing the migraines because I was on Trileptal, which doesn't work for migraine prevention. Now that my seizures are pretty much under control (with the notable exception of the last couple of weeks), the migraines are gone, too.

Seizures and Migraines are linked. People who have seizures are much more likely to have migraines than the general population. Here's more info:
http://www.epilepsy.com/articles/ar_1063754930

Lately I have been having regular headaches, and I suspect either my unfortunate choice of ramping quickly off the trileptal, OR ramping up on the Lamictal. I'm not sure which. I still have the headache so I'm betting on the Lamictal.

Be sure to tell your doc about your migraines. There are additional drugs that can help with them.

Will you let us know how everything is going?
 
Well all, I had a bit of an episode again yesterday :( I passed out several times in an hour and think the might have been small seizures. I ended up in the ER. Blood tests came back normal, but my Dilantin levels were a bit low. I had been nauseous & vomited the night before, but didn't think I'd thrown up the pills so I have no idea why the Dilantin was low. I have been peeing a lot more than usual since I started the pills and have been pretty good about upping my water intake, but I guess maybe I could've flushed them out that way. Sorry for TMI :(

Anyway, I was NOT happy, and told my neurologist I wanted off the Dilantin entirely. I don't think he was happy, but he abided and put me on a higher dose of Lamictal 2 times a day without Dilantin. So we'll see how that goes I guess.

Robin & Endless, thank you so much for your input and your experience. I really am so grateful for everyone's input on this board :)
 
I LOVE Lamictal. It's been very good to me.

The reason why they have to titrate so slowly is to prevent dangerois side-effects, like Stevens-Johnson Syndrome. (Possible complications of Steven’s-Johnson Syndrome include: a secondary skin infection, which can potentially become a life-threatening condition such as sepsis…eye problems…damage to internal organs…and permanent skin damage.

As for your migraines...

Research shows that Depacon (Valproate) and Topamax (Topiramate) are effective in treating migraines and epilepsy. And each has FDA approval for treating them together. Depakote (Divalproex Sodium) also works for both, creating a therapeutic “two-fer.”

There are also several other anti-epileptic drugs that have also been shown to lessen migraine headaches – such as Neurontin (Gabapentin), Keppra ( Levetiracetam) and Zonegran (Zonisamide). However, the dose of AEDs in the treatment of migraines is usually lower than that used for epilepsy.

Drug-to-drug interactions may occur, potentially limiting the effectiveness of prescribed medications. Until further studies are completed, these agents must be used cautiously in people with either seizures, migraines, or both.

Hope this helps, rather than confusing you!
 
Somewhere in a previous post I believe it was DrArvindr that said drinking lots of water doesn't dilute or eliminate your meds faster. It's okay to drink lots of water. :)
 
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