Migraine Relief Kit Giveaway

How do you track your Migraines? My tracking is somewhat convoluted and I am always looking for a better way to track and report them to my doctor.

I have been asked to introduce and review a new Migraine application. The makers of Excedrin^® Migraine developed a new app, My Migraine Triggers^TM, with a leading neurologist that is available for free on iTunes. With this app, Migraine sufferers can track their Migraine triggers and gather the data put into reports and charts that can be easily shared with physicians.

This new app was unveiled at a media event in NYC with actress/singer and American Idol winner Jordin Sparks. Jordin seemed so down to earth and told us about her Migraines and how her mother has real debilitating Migraines. She said she won’t be back home until the day before Christmas when she plans on doing all of her holiday baking and hopes her friend will be able to get all of the ingredients she will need for her baking.  I also hope Jordin paces herself as I know I've learned my own lessons from holiday baking over the years and try to be careful not to overdo it.

I will be giving away TWO Excedrin^® Migraine Relief Kits.  Two of my readers will be selected at random when you enter any family friendly and non-commercial comment to my blog you will be entered for a chance to win an Excedrin^® Migraine Relief Kit. This kit contains items that can help manage some common Migraine triggers or exasperating factors such as irregular sleep habits, loud noises, stress, etc:
• Sleep mask – soft & smooth / cotton & silk with adjustable strap
• Noise cancelling ear buds – high performance with interchangeable silicone ear pieces for a perfect and comfortable fit
• Branded stress ball – my boys like when I squeeze the ball rather than them!
• Herbal compress – place it in the microwave for heat or the freezer for cold therapy
• Branded water bottle – we have to stay hydrated

The Excedrin^® Migraine Relief Kit giveaway winners will be announced in my post the first week of December when I review the My Migraine Triggers^TM Mobile App.

I always struggle with how I should track my Migraines. Currently, I carry a planning calendar in my purse and then translate it onto an electronic spreadsheet where I can make it report different things for my doctor.

The smaller calendar makes it more convenient to carry and write some things down, but it also limits the amount of information I can track due to space constraints in the daily boxes. I battle capturing the information I need to write down if I’m trying to identify a new trigger or answer the question as to why my Migraine patters seemed to have changed.

I had only been using this app for about a week before the media event. However, being a chronic Migraineur, I was able to have some good conversations around it. There was someone at the event who was also trying out the app. She can have red wine sometimes but not always as it sometimes triggers a Migraine for her. She was trying to think of sleep deprivation or dehydration and other triggers like that which may have contributed to her Migraines when she had the red wine.

I asked if she tried to track what she ate when she drank red wine. She hadn’t. I mentioned it could be every time she has shrimp and red wine that this combination may trigger her Migraine. She hadn’t really thought about food and we talked about how easy it was to add additional possible food triggers to the My Migraines Triggers^TM app to try to identify them. The app will gather your Migraine data that can be put into reports and charts which can be printed or emailed to share with your doctor. Here is a sample of how easy it is to add shrimp as a food you eat and to try to track different foods you try:

The left box shows the foods that are listed and that you can add your own.  The right side show how easy it was to add shrimp and then how it was checked off as one of the foods that was consumed that particular day.  It really is that easy!

Migraineurs know that identifying and tracking triggers is one of the most important tools for managing our Migraines. As I mentioned, I still struggle with the best way to record and report my Migraines. I am testing this new app and will provide my honest feedback about this new app – what I liked, didn’t like, would change, etc.

I can be very particular in this area and already know I have a few things I would love to see, as a chronic Migraineur, added to any app I may use. I also know that I don’t like the double entries I currently use or carrying around the extra bulk and weight of the planning calendar.

I’d really like to hear more about how you currently track your Migraines. What tools do you use? Do you find the reporting capabilities from your app or tools you use are what you need to share your information with your doctors; are they effective?

Disclosure:  I am an Excedrin® Migraine brand ambassador. One iPod Touch to test the My Migraine Triggers mobile app was provided by Novartis Consumer Health, Inc., the makers of Excedrin® Migraine; my journey for a migraine-free experience is my own.

Sandy Migraines

In our community, we hear how difficult it is to handle weather because of barometric changes, but this past week has probably affected millions of Migraineurs when hurricane Sandy came rolling through the upper east coast of the US.

Besides barometric pressure, there are other things that can help us with our Migraines. Some of these things we have to be prepared with ahead of time while others I don’t know if we could ever be prepared to really deal with them.

The biggest factors that I can think of right now are food, if you have food triggers, and light if you are light sensitive and need to deal with alternative light sources. I sit here typing on battery power and a borrowed internet supply while under a few blankets and listening to my husband snore away as he cannot use his CPAP machine right now.

I have a lantern that I must hide behind something else so I don’t have the light directly shining in my eyes. If I dared to put sunglasses on, I wouldn’t be able to see anything at all as it would be way too dark. This often makes me wonder if I will ever become normal again as far as lighting is concerned.

Before the storm, we tried to prepare the lighting and lantern situation as much as possible. I have to say, almost a week into this blackout, and the lights seem to be working fine except that I find I cover them up either with a blanket, my hand or any miscellaneous object I can find so the direct light does not affect me.

We needed to make sure that I had some nonperishable foods available around the house that would not trigger me which basically rules out any canned foods. While I am at home, I do have some special granola bars, PBJ (but I can’t have too much or it will trigger) and other small things, but these do grow old very quickly. I also have to make sure I do eat or I will trigger. I am definitely not complaining because things could be a lot worse. I have a roof over my head, food to eat and everyone I know of is safe. Last I heard, they anticipate having our power restored midweek.

Where I want to give my biggest and unexpected kudos as a way to deal with hurricanes to is to my place of business. I’m not saying that because I’ve someplace warm to go to everyday or even charge my batteries, but they have done some very big little things that have helped employees which have also helped relieve some of the strain from my Migraines.

Last week I didn’t need to worry about lunch for most of the week as they provided that plus I could pick things I could eat.  Last week and this coming week, I can wear jeans so I don’t need to worry about cloths as much as normal. I had a place that I could go to, to take a nice warm shower every morning before work.

On the bigger picture and beyond managing my Migraines, I just have to add that my company has not only donated a very, very generous amount to the hurricane, but they will be matching employee donations too.

They have also opened up their facilities this weekend to family members so they can take warm showers, have a place to use the internet, watch some TV, use a gym, a game room (they must have brought some things in because I don’t think we normally have one!), have a bite to eat (the café will be open) and so many other nice amenities.

During the week, my team let people go out during business hours to get gas. That might not sound like much, but the gas lines here are like they were back in the ‘70s. I hope they will start easing now that more people are getting their power back; it has been ridiculous and just another stress on top of a very taxing situation.

Despite trying to be as prepared as I could be, it was not a fun Migraine week. I managed the best I could and did go to work every day as most of my team was affected by the storm. I still believe the Botox helped during this time as it kept some of the clarity I don’t think I would have had otherwise. I’m still trying to figure out Botox, but hoping to get a better handle on it when things go back to normal in my life when using it.

Food and lights were the triggers I thought of that we could prepare for ahead of time since these are things I deal with all of the time. What other triggers can you think of and how would you help prepare for them ahead of time?

It’s Just a headache, You Can Play

I wonder how many D1 football teams try to sweep concussions under the turf. How many of the college football players that we see on the fields are not themselves because they were asked if they ‘really’ could play in the game even though they should not have been put in the position to make that call.

My son’s first college roommate suffered his third concussion in a year. Yes, that is in one year, not his career. His second concussion ‘didn’t even warrant’ getting checked out by a real doctor. Yes, you heard that right too, the football team didn’t take him to a doctor after his second concussion to get checked out to make sure everything was really ok with him. I can’t help but to think about other people who were not as fortunate as he was after they received a ‘small’ bump to the head and ended up not making it due to a brain hemorrhage.

After this third concussion, his coaches asked him if he would be able to play in their next scheduled game. His bell was still much rung where he was definitely not acting like himself, yet they still asked him if he was going to play. I am just very thankful that this young man had the courage to stand up to his coaches around this serious health issue.

His coaches where pushing back with comments like “it’s just a headache, you can play”. If I ever had any faith that his coaches would understand Migraine disease because of all of the big time football players who had to be taken out of professional games because of Migraines, I knew in this instant that it was best we never said anything about Migraines to them. Ugh.

I am just thankful that this young man, this college senior was adult and mature enough, unlike his coaches, to keep saying that he could not play. He was brought to the neurologist shortly after refusing to play where he was told he would need to medically retire because of the number of concussions he had in that short duration.

Why did the player with a brain injury need to make this tough personal decision to his coaches? Why weren’t the coaches looking out for his best interest? Will some of the other players on the team not want to make the right decision now for fear that they will never be able to play football ever again? Could this be portrayed as a punishment for not wanting to play when all you have is ‘just a headache’ by some of the other players?

I remember the recruiting process. I remember the promises made by the coaching staff. I do not feel like they were as upfront about things as they claimed to be with their ‘football family’ where they would never do anything to hurt them. I know the many items they did with my son with his concussion which could have put his life in jeopardy if he was not as out of it as he was and I have not finished dealing with that yet. They can’t keep being this obtuse with our children and ‘their football family’ who they promised to take care of for us.

The coaches did finally get smart about another player on their team who kept playing with a ‘perpetual concussion’. This player just wanted to keep playing, didn’t care about school and only had dreams of playing in the pros. He never reported anything, but it was quite obvious as to his condition. Everyone was turning a blind eye to what was going on to the point where even the coaches were joking about it. It is no joking matter when it comes to playing with your head like this. You would think with all of the press around concussions right now, that they would put a stop to all of this nonsense as quickly as possible. We only have one brain for life and we all must use ours.

This is where colleges need the same laws that some of the states have instituted for their high schools. Nancy Bonk wrote about it on Migraine.com about how NY State enacted a concussion management and awareness law. This is where if an athlete is even suspected of having a concussion, they have to be taken out of play and cannot return to play until they are symptom free for at least 24 hours and have signed documentation from the treating doctor. There are other good things brought on about this law, but it really should include colleges too! The colleges are not doing enough to police and protect their own players which is precisely why the law was needed for the high schools.

I am so thankful that my son’s head is on straight and that he knew classes had to come first. I am so glad his first roommate did not let the coaches bully him into playing because of ‘just a headache’. Your life is not worth risking for a game. These irresponsible coaches are the reasons we need laws to protect our children no matter how old they get.

Do you think this is common practice for all levels of college football? Do you think it still goes on in high school football? What about other sports; does this same irresponsible practice happen in other sports too?

Comment to FDA about Migraines

We have from now until November 1st and not a day later to be heard. It is necessary for us to write our comments in response to the FDA request on the patient-focused drug development initiative.

The FDA is announcing a public meeting and an opportunity for public comment related to FDA's patient-focused drug development initiative. This effort provides for a more systematic approach for obtaining patient perspective on the disease severity and the currently available treatments for a set of disease areas. The FDA is publishing a preliminary list of nominated disease areas for the patient-focused drug development initiative and the criteria used for nomination. The public (that's us!) is invited to comment on this preliminary list through a public docket and at a public meeting where FDA will provide an overview of the patient-focused drug development initiative with discussion of the nominated disease areas.
(Picture taken by my son)

Migraines affect over 37 Million Americans. Peeing at night was put on the preliminary list of nominated diseases areas over Headache disorders and Migraine.  Really?!?!

Go to the FDA link to post your response. We You need you to comment.  If your response will be longer than 2000 characters, you can attach a document with your comments.

It only takes a few minutes to post your comments. It could not only change your life, but the lives of millions of other people. Here are some stats if you need them to help you make your comments.

It’s simple to get there to say your peace:
Click on this link http://www.regulations.gov/#!documentDetail;D=FDA-2012-N-0967-0001 and then go to the Comment Now! blue box in the upper right hand corner. 

We have from now until November 1st to enter our comments.

We deserve better treatments, a better quality of life and can’t let this chance pass us by.

Batty Doctor Appointment

Have you ever had one of those doctor visits? I’m not talking about an appointment where your doctor was horrible and had no clue about Migraines, I’m trying to talk about an appointment like my last doctor’s visit where I can’t blame my doctor for putting all over my chart “patient is confused”. Ugh.

There was way too much going on this summer both at home and work where I became very overwhelmed, didn’t get much sleep and had to take on many more responsibilities than I was ready to tackle. Of course as these Migraine triggers and exasperating factors were building, my first Botox treatment was wearing off.

I had things under enough control that I was able to decrease one of my other preventatives a little since I could no longer tolerate the cognitive side effects I was experiencing. My doctor appointment for my next Botox treatment was postponed and I thought I could manage everything until my next visit, but I would need to try to hold tight as best I could with everything going on at home and work.

Waiting for appointment day ended up being like a kid waiting for Christmas to come where it seemed like it would never get here. Appointment eve is when all of the fun really began!

First of all, I normally have the paperwork ready for my doctor the weekend before my visit. It didn’t work out that way this time. I even had a lot going on the night before my appointment and couldn’t even complete it then.

It was already dark outside and my doggie needed to go out. After letting her back in, I noticed there was something flying and dodging around the house. Can you believe there was a bat inside?!?!

Luckily, my son was around. He grabbed the fishing net from the garage; he used to play lacrosse. After a few gentle tries, he was finally able to catch the bat in the net. To further keep from hurting the delicate bat, he tenderly cradled the bat (this is a lacrosse term where you like rock the net back and forth to keep the ball inside of the net; he did this ever so gingerly) until he got out on the deck and was able to set the bat free. I’m so glad he was home and that he can be so agile!

After this ordeal, I was too tired to put the rest of my paperwork together and opted to finish in the morning. As I was getting ready to leave, I realized my tires needed more air. This was just one more thing in a line of items that needed to be completed last minute before leaving for my appointment.

My drive is usually like clockwork; I can count on it taking two hours to get there. This trip was no exception to how my summer was going where it took much longer to get there than it ever had. By the time I pulled into my parking spot, I was tired and fell asleep.

My luck was still on my side! I quickly realized that my headlights were still on. I’m sure you guessed it, my car battery was dead. Not only did it make funny electrical noises when I turned on the key, but it somehow managed to keep making these same noises after I turned the key off and even after I pulled the key out of the keyhole. I didn’t have any wiggle time left and had to leave to go to my doctor’s office. Can I say ugh again?

I was also a little more apprehensive with this visit because due to the appointment postponement, my FMLA had expired the day before, yes, the day before this new appointment date. I would have been all set with my original date and my FMLA. Luckily, my company has a grace period where I can still get my medical recertification form in after the expiration date, but I really don’t like operating things that closely.

The nurse’s portion of my visit was unremarkable, but every time I have gone, I seem to get a different nurse with a different routine. I am still trying to get used to that.

I will reluctantly admit that I barely remember the doctor’s portion of my visit. I basically wanted my shots and to get out of there which is totally against my character. I do remember him asking me to do something that just seemed totally absurd to me and quite frankly, it still does.

I can still see his face by my reaction and can only imagine what my face must have looked like. He even repeated himself which only reinstated the ridiculous statement to me which I still don’t understand even being in a much clearer state of mind.

Given where I was back then, I didn’t question him, but he did change his course of action after he repeated himself and I’m positive that his notes say, once again, “patient is confused”. We will have a talk about this during my next visit. He has written that statement before when I increased my medication too quickly, but I wasn’t confused this time, just tired and I couldn’t ask the question I needed to clarify his request. He’ll get a few questions next time.

This is a big reason why if you can have someone go with you to an appointment, to be an advocate for you, you should have someone else with you. Yes, I had things written down and my paperwork with me, but I wanted to get in and out of there. Again, this is totally not like me, but if I had someone with me to advocate for me, they would not have let me take this easy way out and they would have known me well enough to know why I had the dumbfounded (not confused) look on my face when the doctor gave me his silly directions.

I gave myself a pass on this last appointment, but I can assure you that during my next appointment, my doctor’s notes will not say “patient is confused”. I started writing notes and revising my plan of action right after my last visit and keep typing little notes and comments as the date comes closer. I will be ready and even if his horribly bright office lights start to confuse me, I will have a plan B for that too. I have a top notch doctor who can’t help me unless I give him the information he needs. Enough.

What was your strangest appointment like?  I'm sure there are a lot of stories out there; even leading up to your appointment. 

Me Time

During Migraine Awareness Month in June, we had a blog topic for each day. One of the topics I wrote about was titled “Tea for Two”. We were supposed to write about who we would want to sit down to have tea with for the purpose of explaining Migraine disease to them so they would truly understand it.

The person I chose was me. Although I haven’t formally sat down with me yet, I’ve had many deep conversations with myself lately. One of the things I said made me realize that I need to have more 'me time' no matter what else is going on around me. It may be tougher one day compared to the next, but I have to find that time regardless. If I’m not any good myself, I won’t be any good for anyone or anything else I try to do.

This reminds me of a post that Dr William Young of the Jefferson Headache Center wrote on the Alliance for Headache Disorders Advocacy (AHDA) website where it is especially important for chronic Migraine patients to find a third-space. Migraine disease is so consuming, and has such an impact on family and work relations, that finding this third-space sanctuary becomes an ever more critical inoculation against becoming overwhelmed. It doesn’t matter what that third activity is as long as it involves something that is meaningful to you.

I’ve been a little overwhelmed with things this summer, but I feel like I’m getting more balance in my life as I go back into my third-space which gives me the ‘me time' I was missing for too long. One of my third-spaces is reading what my blogging friends have to say and writing about my Migraine journey. Another one of my third-spaces has always been sports. I’ve had a tough time with this one for the last couple of years, but I have actually managed to play two volleyball games this month and look forward to playing as many as I can this season.

What is your third-space? Does it give you the balance you need in your life? If you don't use your third-space right now, what would you like to do?