Monday, April 28, 2008

And the winners are....

The winners of the 2008 My Migraine Connection Poetry contest were announced today. The winners were selected by MAGNUM. Please check it out!

Oh and big kudo's to my friend MJ who took third place Congrats MJ! (you can visit her blog at Rhymes with Migraine ) and you can read her poem and the rest of the winners by checking out My Migraine connection at this link right here!

Friday, April 25, 2008

One heck of a week....

Just a little update here.

Up until now, I've been pretty lucky. I have been averaging about one migraine every sixteen days. This has been my pattern since January, when Dr. Greene put me on the Amitriptyline, which was added to my Topamax.

Well - this week has just proven to me that I can still take a step backward.

"Just when you thought it was safe to go back in the water." (for those of you who don't know, this is the famous tag line from JAWS, which is one of my all time favorite "horror" movies and the reason I don't swim in the ocean)

I had three - yes three, migraines this week, including today - right now. The first two this week started out at tension headaches that I could not get rid of with my normal Skelaxin, and then went into a migraine. After I took a Frova on both of these occasions, Mr. Migraine went away.

Today was a different story.

It started out very small and quiet. I thought, "oh, no big deal, I'll throw some Skelaxin at it while it's at a 0/1 and I'll be good to go". Well that didn't help so an hour later I ended up taking a Frova.

The Frova knocked the pain down from it's then 4 to about a 2, but the throbbing in my left eye was still there and reminded me every time I moved. Along with the oh so lovely nausea. Thank God I had learned earlier in the week from my girl MJ (see her blog at Rhymes with Migraine ) had mentioned something about how Ginger Altoids help her....low and behold we had them in the kitchen at work! So I ate my weight in them today.....

I get home and Mr. Migraine is still alive and kicking. I end up resorting to my rescue drug, Vicodin. I only take half tabs because of course, the whole pill will make me nauseous. So I had a half and was good for about 3 hours, now I feel it creeping back up again. Oh what fun it is!

I really can't think of what caused this sudden spike in migraine activity, except the change in the weather. Everything here in good 'ol New Jersey is in full bloom, although I don't seem to be having any allergy symptoms.

Oh well. Ya win some, ya lose some.

If this keeps up next week, I'm definitely going to call my neuro and see if I can get in a litter sooner then my scheduled appointment in July.

I hope the rest of you out there in migraine land had a better week then I did!!!!
Enjoy the weekend!!!!

Monday, April 21, 2008

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!

Tuesday, April 15, 2008

Blog Carnival Posts are up!


Yes, I didn't put this up right away - we had some Internet issues the last few nights and finally we have things up and running! Yippee! In touch with civilization again!!!

On April 14th, Diana over at Somebody Heal Me announced her blog carnival!!


There are some wonderful entries, 14 in total!! Some names I recognize, some I need to get to know!! My friends Teri Robert and Megan Oltman both have submissions up there, along with many others, so please check them out!!!!


Ok guys I promise, that's it for tonight!!!


See you got three in one day!!

2008 Putting our Heads Together Poetry Contest!!


What a great way to express yourself and raise awareness!! Brought to you by Help for Headaches and My Migraine Connection, and judged by MAGNUM: The National Migraine Association.

Lead MMC expert, Teri Robert has helped put together this great event, sponsored by her site, Help for headaches and the Health Central site, My Migraine Connection.

Entries need not be long, I was looking over past entries today and got inspired to write my own! Even if this would be your first poem or written word, feel free to enter it!!! It would be a wonderful way to express yourself and get your thoughts out there!!

The deadline for entries is April 21st, and winners will be announced on April 30th.

You can enter the poetry contest by going to MMC at this direct link Here.



Please show your support and enter!! It will be fun!!

Migraine Haiku

Frova please save me

From my misery and pain

Go away migraine!

Saturday, April 12, 2008

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.

Thursday, April 10, 2008

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.

Saturday, April 5, 2008

What you do when it all comes crashing down.

So I had a great run this time. I went 17 days migraine free. I was not even done with my "migraine euphoria" post yesterday when I felt the beast start to dig it's claws into my head.

I have to say, it was not as bad as I thought it would be, head wise....but the nausea - oh man - all day long!

The one this I was really upset about was I actually had plans last night - yes, me - LEAVING THE HOUSE plans!!! Shawn and I still went out....my migraine had calmed down by then, but I still had the side effect of my postdrome.

Ok raise your had if your flesh aches after taking Frova!!! I swear it is the strangest side effect ever for me, I can take it considering that the Frova attacks my head and knocks out that migraine in a matter of an hour, but why does all of my flesh hurt after????

Sounds strange right?? It used to just be the back of my arms ached - now I noticed it's all over that I ache after taking it. I used to only get achy if I had to take two doses, now I notice it on one.

Please dear God don't make the Frova stop working!!! That is my biggest fear!!!! I can take the flesh pain!!! Yeah, all of my skin, and under it like the meat on my body aches when I touch it....I don't know...it's gone today and so is the migraine so I'm happy about that.

Ok, well onto some other exciting things. Yes, I'm going to plug some of my friends here so consider yourself warned!!!

We went to see our friends Insouciant Play last night - you guys please check them out - they are really good!!!! We had such a great time!!!




Also - My husbands band Annoying Customer is going to be heading into the studio to do some recording next weekend!!! Yippee!!!! I am so excited about this!!! Check them out too!!! I am especially fond of their new song "Mongoose"!!!! So please take a listen to both of them!!!

And last but certainly not least - we have Daina over at Somebody Heal Me Who announced her blog carnival yesterday!!! So for all who are interested please check out her site for details. The topic this time around is "strategies for coping with headaches and migraines". The deadline on this is midnight April 11, 2008 - so if you are interested, please go check her blog out for more info.

Ok kids, that about wraps it up for today!!!

Until next time - take care of yourself and be kind to each other.

Friday, April 4, 2008

AHDA needs letter sent TODAY!!!! ACT NOW!!!

Ok - sorry this is going to be a super quick one because I'm working - but I just got my AHDA action alert email which I will paste below - please go to the site http://www.allianceforheadacheadvocacy.org/ and email your senators - RIGHT NOW - TODAY - LET'S GO!!! MOVE IT!!!


Please Email Your Senator Today!
Dear Mrs. Gray:
Our efforts last month to urge members of the US House of Representatives to support increases in NIH funding for research on headache disorders were highly successful. Twelve Representatives signed the Obey/Walsh letter. This is an outstanding result for the first mobilization of our numbers, and we are optimistic that it will be enough to have our message appended to the House appropriations bill.
It is now time to contact your US Senators for the same purpose. Unfortunately our window of opportunity is only narrowly open. The letter with Senators' signatures must be submitted by today, April 4th.
Please take just 5 minutes RIGHT NOW to go directly to http://capwiz.com/headacheadvocacy/home/ and send your message to your two US Senators
Please forward this email right away to anyone else concerned about the inadequate state of care for patients with headache disorders.
Only with increased research will new effective treatments for headache disorders become available. And only with your help will such research activities increase to levels appropriate to the huge scale of this problem. The larger our voice, the greater will be our impact.
Thanks again for your efforts.
Robert Shapiro, MD, PhDWilliam Young, MD,Teri Robert, PhDBrad Klein, MD, MBA

Migraine Euphoria - love it or hate it?

Let me explain for those who don't have the pleasure of experiencing this. I think that I only know one Migraineur besides myself that gets this and that is my friend Heather, (please visit her blog The Journey of a Migraineur )




Ok so Migraine euphoria aka waiting for the other shoe to drop. It's when a couple days before a horrible migraine, I get extremely happy, euphoric, crazy, etc. I feel like jumping out of my skin, act like a freak, talk a mile a minute (ok, well that's normal), clean, clean, clean - jump around, dance and feel like my skin is buzzing.



This is both a blessing and a curse.



It reminds me of the days of "what the hell is a migraine??" Back before my life was turned inside out by this disease that I now feel I have to watch everything I do for the potential ramifications. I feel carefree and happy.



The down side is - this usually means a big mother is on the horizon. I very rarely get this way, but when I do - a big one is lurking around the corner.



So what do I do? Enjoy it? Take it for what it is? Analyze every second of it, waiting for it to stop and the pain to begin?



I used to almost force myself into a depression over it, knowing this is not a good sign. Now, this time around, I've had this feeling for 3 days. Maybe it's just that I am in a good place, I've been migraine free for I think 17 days now - (woohoo!!!). Maybe it's just that I'm finally feeling good.....am I waiting for something that won't come?



My usual prodrome protocol is nausea or heartburn, increased visual floaters, tinnitus, smells, sometimes hearing things. I have had none of this, well a little tinnitus, but that is about it. So am I over reacting? I don't know.



I've decided to just ride it out and enjoy feeling good.



At the first sight of pain though - I am popping a Frova as fast as I can get it out of it's stupid packaging!



Till then - Take care of yourself and be kind to each other.

Tuesday, April 1, 2008

Please sign up for the AHDA email alerts!!!

This is my first shot at solo video.....it's not great, but it gets the point across. I'm putting this rough draft up now to get you all to move your butts and sign up for the AHDA email list. The second wave of emails are coming up - and we don't want you to miss it!!!! Please, sign up at The AHDA website NOW!!!!!



video