questioning patients w severe migraines and epilepsy

[suebear]

I have a question for those who are experiencing chronic migraines and epilepsy. I had brain surgery that removed a scar and temporal lobe. After the surgery, migraines developed and have not gone away. I have gone through multiple types of medication and there has never really been one particular thing that seems to work.

The most recent medication I am working with now is an inhaler which seems to work but it is not exactly keeping them calm. The migraines are starting to become more and more persistent like they were years ago. I have reached the point now where this is Day two of a migraine and I have barely been able to function.

What I am starting to research is how well Botox works for patients who are chronic migraine pain. Is there anyone who has experienced this and would you be willing to share with me your story. Feel free to ask questions if I've not been clear, I'm in a lot of pain as I write this but I am looking for some answers.

I appreciate anyone who can provide me with any insight.

-Sue

Edit to add: I go to my neurologist on October 13 so I would like to get as much information together as possible to present to him for my case and a possible fix.

PS. Current medications I am taking now are Febatol and Topomax at a very low dosage.

 

[Meetz1064]

Hi there

and welcome to CWE! It's nice to meet you, and you've found a WONDERFUL place to be! Mr B has made us an AWESOME home here......so kick up your feet and stay awhile........

Mmmmmmm, migraines. I hate those suckers.:mrt::twocents:

I still get them every day, but they're not as violent, they're manageable, in part because I take magnesium every day. I can work thru them on a daily basis now, if that makes sense............in other words, what WAS a horrific migraine EVERYDAY is only a horrific migraine every once in a while. And what I have on a daily basis......I can use a heating pad, some meds, and usually lie down, and semi-function.

My solution, however is not Botox. Wish it were....Simply a neuro who's willing to try various cocktails for me.

I WAS on Depakote to manage them (& the seizures, too) for a long time, now I'm on Topamax to manage them (only), along with the magnesium....plus Imitrex, Treximet, Inderal, Inderal LA, and I can't even begin to remember the rest of them.

I wish you the best of luck. Migraines in any form SUCK.

And again, welcome to CWE.

Meetz
:rock:

 

[RobinN]

I had migraines for 30 yrs and was relieved of them after taking ionic magnesium.
Though I have never had brain surgery, chelated magnesium is also the therapy that is being used by my daughters neurologist for her seizures.

BTW - Welcome to CWE

 

[Nancy]

Hello suebear -- sounds like you have MISERABLE migranes. I'm so sorry about that.

Seizures and migraines hit me at the same time - when I was 46 - and I didn't know what either of them were...... I just knew I was scared and didn't know what was happening.
Now I'm 64 and, thanks to surgery, I haven't had a seizure for 16 months but the migraines keep pounding.

I have pretty good relief with the triptan Relpax taken with ~sigh~ two Excedrin (and I use WalMart's imitation Equate)

I am a great admirer of the triptans. I wish the they could help you. Have you tried all of them?

 

[suebear]

I still get them every day, but they're not as violent, they're manageable, in part because I take magnesium every day. I can work thru them on a daily basis now, if that makes sense............in other words, what WAS a horrific migraine EVERYDAY is only a horrific migraine every once in a while. And what I have on a daily basis......I can use a heating pad, some meds, and usually lie down, and semi-function. My solution, however is not Botox. Wish it were....Simply a neuro who's willing to try various cocktails for me.
I WAS on Depakote to manage them (& the seizures, too) for a long time, now I'm on Topamax to manage them (only), along with the magnesium....plus Imitrex, Treximet, Inderal, Inderal LA, and I can't even begin to remember the rest of them.

Hi Meetz,

Thanks for the greeting. I was so down and out when writing this evening I could barely get out everything that I needed to. I'm glad you were able to make sense of what I had posted. lol Anyway, as for the magnesium, it's not something I can manage as I take a vitamin every day for women for my daily routine. That would be an overdose for sure.

I've tried Inderal and the Inderal LA but something which I found out regarding those two was a life learning lesson. Even though they did work they stopped. Another issue about Inderal, it's a beta blocker and beta blockers are technically something a person who has hypertension, high cholesterol, or high blood pressure would take, I have none of the above. Being as I do not suffer from any of that, I have to be careful with taking that sort of medication.

In regards to Topomax, it doesn't help me and that is not something which will be increased as it makes me quite sluggish so that's out. The other epilepsy medication, Felbetol, works wonderful as my complex partials are becoming more and more sporadic.

We (the neurologist and I) had discussed Imitrex at one time but due to the odd side effects others were experiencing we decided against it. We just felt it was too much to chance at the time. I had taken Midrin, which did work but temporarily (six months or so). Inderal was the best one to have worked for me however it eventually quit working after three years so I was removed from it.

Now the latest drug of choice is Migranol which is a nasal spray yet it does not have steroids. It actually has worked well however there has been a situation the past month were over time the migraines have started to build.
I have been starting to limit my time on the computer and see what that does but that hasn't made much of a difference.

As of the last two days, the pain was so intense the Migranol didn't work at all. Yesterday I just laid back on the couch with an ice pack on my head so the blood vessels would shrink back up. Today I tried to get some cleaning done but that didn't work out well. I ended up getting stuck back on the couch with an ice pack and this time I took a Vicodin to kick the migraine. That was about the time I wrote my first post, I've been sleeping since. I woke up and my head actually feels like I can function now.

Something I was well aware of before the temporal lobe removal was the affect these migraines could have. I can recall 72 hours of needing to be in darkness because of a migraine and back then I was taking some fairly heavy stuff. Anyway.

Sorry so long. Before I forget. I am a former business executive who just completed my Masters in Business Administration on Monday (this week). I'm ready to go back to corporate but not until we get this issue with the migraines figured out.

Will surely be coming back to visit as I like how this is set up. Thanks for your thoughts and support.

-Sue

 

[suebear]

I have had migraines for twenty years and dealt with many phases of migraines in my life! In the last few years though I have very severe migraines that seem to progress into tension or cluster headaches or worse! I have taken all the triptans on the market and it hard to get control of my headaches. In the last year my dr. is using Topomax for my szs' and migraines and relax right now. So at this time I can't go outside in the sun because it hurts my head and so does activity, and extreme flashing lights and foods and sounds .
I have very sensitive headaches that bother me everyday!
David Hair

My migraines came from brain surgery (1995). Second, I'm already taking topomax as one of my epilepsy medications so that really isn't an option. Third, going into the sun doesn't bother me as I do it every day when I take our miniature schnauzer outside.

As for flashing lights, haven't had an issue with them. Never had any trouble with food or such. I already know what's causing the headaches. As I said it's from the brain surgery that took place in 1995. Now, it's a matter of finding the best way of dealing with them.

Because I have chronic migraines, I am wondering how beneficial Botox injections actually are to patients. onder:

 

[suebear]

Hello suebear -- sounds like you have MISERABLE migranes. I'm so sorry about that. Seizures and migraines hit me at the same time - when I was 46 - and I didn't know what either of them were...... I just knew I was scared and didn't know what was happening.
Now I'm 64 and, thanks to surgery, I haven't had a seizure for 16 months but the migraines keep pounding. I have pretty good relief with the triptan Relpax taken with ~sigh~ two Excedrin (and I use WalMart's imitation Equate) I am a great admirer of the triptans. I wish the they could help you. Have you tried all of them?

I had to giggle when you said Excedrin for Migraines. I used to take them like candy as I was popping two Execdrin every six hours. When my neurologist discovered the headaches came back that was one thing, when he asked me how many I was taking his response was well we'll just have to change that before you kill your kidneys off. That was when we started considering different options for migraine medication.

What really bites is the Inderal LA was the best thing I had which was working unfortunately, I don't have anything wrong which I need a beta blocker so that's something we need to be careful about. The patients who take beta blockers are usually those which high blood pressure and I don't have that problem. Other than the epilepsy, I'm quite healthy.

Heck, at the rate I'm going now, the seizures are slowing down to one every 10 days or more since I've had the Vagus Nerve Stimulator. We've found the right mix of medication for the seizures. Now if we can only solve the issue for why these migraines suddenly acted up like this as I'd like to go back to work. *sigh*

 

[RobinN]

I found Maxalt sublingual to be one of the best meds.... and over 30 yrs I tried a lot of them.

 

[suebear]

I found Maxalt sublingual to be one of the best meds.... and over 30 yrs I tried a lot of them.

I'm not sure what that is. I know there are many medications on the market. When I have a chance I will do research for the FDA trials are for it.

 

[RobinN]

It is a medication, just as Imitrex is a medication used for migraines. Sublingual means that it goes under the tongue and melts through the skin and is absorbed immediately. Rather than being a pill that is swallowed that is absorbed through the stomach.

I can manage as I take a vitamin every day for women for my daily routine. That would be an overdose for sure.

I think you might find otherwise. Look on the side of your multivitamin and see how many mg of magnesium there is. My daughter is taking at the high end 1000 mg. Not necessarily recommended for everyone. At the low end the RDA is a min of 400 mg. For therapeutic purposes it goes much higher than that.

It is possible also that the amount that you get in your multi isn't even getting absorbed properly before it is flushed out of your system.

IMO

 

[Bernard]

Hi Sue, welcome to the forum. :hello:

... as for the magnesium, it's not something I can manage as I take a vitamin every day for women for my daily routine. That would be an overdose for sure.

The body doesn't store magnesium - excess gets excreted. Check this out: ionic magnesium

Some other ideas you might investigate (for migraines) are oxygen therapy and EEG neurofeedback.

 

[suebear]

It is a medication, just as Imitrex is a medication used for migraines. Sublingual means that it goes under the tongue and melts through the skin and is absorbed immediately. Rather than being a pill that is swallowed that is absorbed through the stomach. I think you might find otherwise. Look on the side of your multivitamin and see how many mg of magnesium there is. My daughter is taking at the high end 1000 mg. Not necessarily recommended for everyone. At the low end the RDA is a min of 400 mg. For therapeutic purposes it goes much higher than that. It is possible also that the amount that you get in your multi isn't even getting absorbed properly before it is flushed out of your system. IMO

What works for one person may not work for another. Have you seen the show Mythbusters? I happen to see a one of their shows where they were using magnesium with help of the ATF. That's all I'm going to say about it.

A daily multivitamin has the exact amount a person needs to consume. A lot of a person's health comes from what they eat. The way I look at it, if someone actually needs to put more metal into their system than daily recommended, there could be something more than the naked eye can visually see. That is just my opinion. Furthermore, speaking as someone who has just received a Masters, I prefer to avoid anything that could possibly do damage to my health.

I think I will be investigating the left over migraine medication including Botox-A as I hear that helps those who have chronic migraines such as my case.

 

[suebear]

Hi Bernard,

Do you know anything about the neuro feedback on a personal note? I've researched it but I don't quite understand how it works. I've made note of it to take that into my neurologist when I see him in October. Thanks! and Thanks for the welcome.

Sue

 

[Bernard]

Yes, you can read my wife's story here: http://www.coping-with-epilepsy.com/index.php?p=story and read more about neurofeedback from the link in my signature below. You can also check out Rebecca's experience from the link in Robin's signature.

Your neuro likely won't know much about neurofeedback. Most practitioners are psych docs, not neuros.

 

[suebear]

Yes, you can read my wife's story here:
Your neuro likely won't know much about neurofeedback. Most practitioners are psych docs, not neuros.

Interesting. To be honest, I've had epilepsy since the age of two and as I said it was from the cause of a scar formed from multiple fevers. It has gotten better over the years but one time and that was only after the removal of the scar itself. As for the type of seizures I have, they are complex partials.

As for my neurologist, he is by far one of the most experienced. I was referred from my previous neurologist who performed my brain surgery when moving to Nebraska in '95. My neurologist listens closely to his patient's needs. He speaks with a group of doctors at our University of Nebraska Hospital which is also a learning hospital so he stays on top of issues regarding neurology. As he finds out new issues, he informs me of what they are if they fit my case needs.

 

[RobinN]

It sounds like you are well cared for, or that you have great confidence in your care.

Rebecca has a heterotopia, and some believe this is the focal point of her seizures. Neurofeedback has been able to help with her seizures since we began last March. Neurofeedback has been shown to help even those with brain damage.