The honest to god truth....what I put in my body everyday.

So I thought it would be good to let my readers know exactly what I take everyday, for those maybe not as familiar with Migraine Disease. Yes, at age 30 I have over 5 scripts and take a total of I think 10 pills a day. Here we go:

A.M.
Topamax - 25mgs
Multi Vitamin
Magnesium - 650 mgs
Calcium - 1000 mgs

P.M.
Topamax - 50mgs
Amitriptyline - 20 mgs
Melatonin - 5mgs
Jolessa - one every night

And on an as needed basis:
Frova -2.5 mgs, allowed up to 3 pills per day if needed - but not more then 3 times a week or may lead to Medication Overuse Headache
Skelaxin - 600 mgs - as needed up to 4 a day for Tension Type Headaches
Tigan - 400mgs as needed for nausea
Vicodin - 500mgs (I split them in half) as needed for Rescue

Yep, so I think that's about it, and that's not to mention the vitamin C that I take to help my TTH's go away faster.....

So although you may think by looking at me "You don't look sick" - remember to not judge a book by it's cover. I sometimes feel like a slave to the drugs that I take. If I don't take them, I get very sick. If I take to many of them, I can get very sick. It's quite the balancing act us migraneurs play.

So this was just a little peak into my world. I don't think I've actually ever broken it down before. Wow!

I used too.....

There are certain things that this girl can no longer due because of migraine disease.

I used to be able to stay up late, get up early, live on hardly any sleep - no more! Those days are long gone! Now it's in bed by 10 - 11 at the very latest. Waking by 8 at the latest, even on weekends. Yes, even 8 is sleeping in for me, I'm usually up by 7, but try to get another hour of sleep.

I used to be able to hang out and drink red wine, or anything (except brown liquor!, that's always been a no-no!) for that matter and get a little, shall we say, "socially lubricated" to not say "drunk" LOL - now, there is no way that I can even get past a half a glass of wine, which is usually white, since red is a trigger for me. My medications make me feel intoxicated after about 5 sips, so yes, now I am the lightweight of the group.

I used to be able to cardio kickbox - and I loved it. I loved taking the classes, doing it at home with a video or something. Now, I'm afraid that the bouncing motion will jar my head and bounce my brain around too much and cause me to get a migraine. I really can't even run on a treadmill anymore because of the bouncing impact of it.

I used to be able to blast my music while driving in my car.....oh I think I have the hardest time with this one!!! I still do from time to time, but I usually have at least a low grade head pain that I really can't listen to anything loud. Oh but to remember the days of just blaring the radio and driving around....that was fun. I used to love that.

I used to not have to worry about these things and just live my life. Now, I feel like I'm on constant look out for triggers and possible pitfalls. Don't get me wrong, it's not difficult. It's just annoying to feel like I'm a prisoner in my own body. It could be worse, I know. I am not trying to cry the blues. I just miss some of the things I used to be able to do.

Fighting the good fight.

The road to "recovery" or just I guess a better word would be "managing" migraines can be a very twisty, windy road, with lots of branches and speed bumps in your path.

I started on my journey to gain my life back from my head about 3 years ago now, when my migraines grew out of control. Back then, I didn't even know what a migraine really was, or even thought that I had them.

All I know is that I would be at my office every day with tears streaming down my face, not because I was crying (well, sometimes) but because the pain was so intense and the lights so bright, that my eyes would tear from the pain.

I thought this is something I just have to deal with, it's just a "bad headache". In a way I'm so glad I was wrong. At least now, I don't suffer alone.

I have found through education, which, sorry to say, really didn't start with my first doctor - all they did was throw some Zomig at me and say "try this when you feel your head start to hurt". Yeah, thanks for your time!!!!

Between doctor #1 and doctor #2 - I found the site and the woman that helped me change my life (holding back tears now). My Migraine Connection is the site, and the lovely Miss Teri Robert is the woman. This lead me to Teri's book, Living Well with Migraine Disease and Headaches. I think I read it in like 2 days! I couldn't put it down!!! It was everything I needed to know about migraines that my doctor didn't or wouldn't tell me (yeah, that's part of the title too! LOL)

So between the website, the book, and Teri - I knew that there had to be more out there for me. I saw another doctor and was scripted my first preventive.... Topamax.

Topamax became my life saver....but it didn't last long. I found myself on the MMC forum every day, asking questions, talking with people with migraine and going through the same things I was going through. I kept reading, learning and educating everyone I could on this disease, as fast as I could learn about it!

Now, I am trying to not only be my own advocate, but be one for others. I now host on MMC with Miss Teri who is the end all, be all of migraine knowledge, among other things she is one of the nicest people I've ever had the pleasure of speaking with.

So you ask me how I cope with what I know know is a neurological disorder that effects over 36 MILLION Americans?

I learn. I teach. I fight. I educate.

I go to sites everyday to see what's what with the latest on migraine - blogs, MMC, email alerts anytime Migraine is mentioned ANYWHERE on the web!!! Yes, maybe it's become a little obsessive, but this is not like any other disease, at least not that I know of.

There are hundreds of different preventive medications currently being used for migraine treatment....it can take a very long time for a migraineur to find the one - the one that works. I try as hard as I can to be my own advocate. I learn about this disease, sometimes to the point where I know more then the doctors treating me (and that's when they get fired!).

I am out there, fighting not only for myself, but for all of us migraineurs - fighting to get us more funding, by sending out emails and posting about the AHDA. I'm leaving the flyer's in my office, giving them to friends, family, my doctor, pretty much anyone who will take one and give me two seconds to explain how important this really is.

This is how I cope. I cope by fighting the good fight. I cope by knowing, we can and we will make a difference.

We are one voice united, and if we all fight together, together will succeed.

New Neuro, New Med!

So Tuesday I finally got to see my new neurologist. I was excited and also, to be honest, a little ready for let down. This was now the 6th doctor I was going to see for my migraine disease. I guess the 6th time is a charm!

Compared to the other twits I've seen, this new doctor, from now on, I'll call him Dr. G, he actually LISTENED to me. TALKED to me and TREATED me like a human, on his level and the same planet he was from. Not like those "other" doctors who talked down to me and made me feel like I knew nothing about this disease I have. I've probably done more research on migraine disease in the past 3 years then these doctors have in their lives!

Anyway, I'm getting riled up. Back on topic. So Dr. G listened to me and says he thinks I have transformed migraines. And no, that's not when your migraine turns into a robot. It's usually from over using medication....or at least in 80% of the cases. But for me, it's not since I tend to under use it.

So Dr. G and I discuss options. We talk about the Topamax that I've been taking for about a year and a half now, and how it's not working anymore. We decide it's time to get off of it. But first, we are going to add in Amitriptyline on a low dose to get the transformed migraines under control. Then back off both the Topamax and the Amitriptyline.

Amitriptyline is a Tricylic antidepressant (TCA) and used in low doses, can be a good preventive for migraines.

I'm just concerned because one of the side effects, like the second one, is "may cause increased hunger....especially for sweets" Awesome! Just what I needed, and increased appetite for sweets! Why couldn't it be like "may cause you to want to eat salads all the time" or "may cause excessive urges to work out"....nope, this is going to make me want to sit down with Ben and Jerry and just chow!

Yes, I know - all side effects are potential, but you know this one is going to happen to me, since I'm the one who went to culinary school to learn how to make all those sweets!!!!!

I guess time will tell. I'm on my second day of 10mgs. of amitriptyline. I stay on that for 2 weeks and then I go up to 20mgs.

I hope it works. I am so done with feeling like crap. I had a migraine all day yesterday. And, since I've already maxed out my abortive for the week, I was on Vicodin all day, which did squat. All it did was make me loopy. I still couldn't sleep, the pain was still there, and I was just a zombie all day with what felt like a knife going through my skull!

Well that's about it for this round.

I just wanted to take a moment to remember my cousin Joanne who passed earlier this week. She was only 55. She had a brain tumor which the doctors said was inoperable. It all happened so fast.

Joanne never married or had any children.

I will remember her for her long black hair, her sarcastic humor (I think that's where I get it from!!!!), her love of the Yankees and her love and dedication to her family.

Joanne - even though we were not that close - you were my "cool cousin" and I will miss you terribly. You were taken way to early and I'm sorry that it had to happen that way. You will be missed.

Wow a weekend went by and no pain!

I have no idea how that happend! But, I am on my 5th day of no migraine (please, keep clapping to a minimum) I have felt pretty good the last couple days. I really don't know why!

I've been on Jolessa now for 4 weeks - so this is the week I would normally be taking a placebo - so here's to hoping that the Jolessa breaks my menstrual migraine spells!!!! That would totally rock the hizzy!

For those of you who don't know - Jolessa is the generic Seasonale. So instead of taking 3 weeks of pills and then a placebo week, I now will take 12 weeks (I think??) of pills and then a placebo week. Plus the pills are all the same stregnth, unlike the ortho, which got stronger and stronger and then dropped you off a cliff with no hormones! UGH I think that was the worst of my issues! So we will see how it goes.

No migraines and no period???!!!! Is that even possible!!!! Oh I would so love that!!!

Here we go!

So I decided to start a blog....

Here's a little about me. I am a migraine sufferer. For those of you who don't know, Migraine is a neurological disease that strikes 36 million Americans. I have had the honor of hosting at a wonderful site - My Migraine Connection which is run by the lovely Miss Teri Robert!



After reading her book, Living Well with Migraine Disease and Headaches I can honestly say it changed my life. I went from being just a sufferer to being an advocate. I am now so much more involved with my health care then I ever was before. Her book gave me my life back.
And, the forum setting she has created on that site is so comfortable - it's like talking with family - only they actually "get it"!

Since this is my first "blog" and I'm just learning my way around this thing - I'll just start with this.

If you are suffering from migraine - know there is help out there. You do not have to suffer alone. Migraine is a silent disease. It can also be very depressing. I know for me, there are many times when I feel alone and sad, depressed and like no one understands. Trust me - people do.



There are so many medications out there now to help control migraine - it's amazing. There are over 100 different preventives, in almost every drug family, Anticonvulsants, Beta Blockers, Anti-depressants, SSRI's, Muscle Relaxers, ACE inhibitors, Calcium Channel Blockers, just to name a few!



My current regimen consists of 75mgs of Topamax (anti seizure) which I take in a split dose, 25mgs in the morning and 50mgs in the evening. I also take a multi vitamin, 250mgs of Magnesium, Frova 2.5mgs to abort, Skelaxin 800mgs as needed, and Meletonin every night at bed.



That's just a bit about me - I figure that's good for a first post right? But because of my obsessive nature, I'm sure I'll be back on here later to post again!