Saturday, December 29, 2012

Migraine Specialist’s Lights Brutal

In the month of December, I went to my doctor’s office once a week. These visits gave me the time to think about what really aggravates me about the office and to sort things through. The first three visits were not with my regular doctor, but the last one was with him.

I had wrong expectations around my doctor’s office from the beginning. I was under the impression that his office was like dying and going to Migraineur heaven. I heard the office lighting was very soothing, there was little noise and no smell triggers to set us off. Well, two out of three …, no I can’t even say it. The lighting in my specialist’s office is horrible!

I remember the first time I approached his office for a visit. The door has the sign pictured above – “Please Do Not wear Perfume or Cologne on the day of your appointment. Scents can trigger headaches in some patients.”

My first thought was - Wow, it really must be as great of an ‘office’ as I have heard; the long commute should be worth it not only because I was finally going to a true Migraine specialist, but they seem to take care of the whole you here.

Well, the office does not have anyone wearing perfumes and it is relatively very quiet, but that’s where it stopped. It’s worth repeating, the lighting in my specialist’s office is horrible!

The waiting room is full of exposed CFLs! There is not a darker area anywhere to be found. The examination rooms are probably bright enough to lead Santa’s sleigh on the foggiest Christmas Eve on record! I can definitely understand needing that type of light when performing procedures, giving oodles of shots and things like that, but for talking or before and after those procedures, I can’t think of a single reason why my Migraine specialist’s office needs to trigger a Migraine for me every visit.

I am embarrassed to say this, but I have taken comfort by sitting in the hall and only going into the waiting room at the last minute. However, I have found that there are scents in the hallway, but the lights in the rooms are much worse than the occasional passersby who have a bad scent.

I had mentioned this ironic discrepancy to some of the nurses throughout various visits, but they always gave excuses or said that’s the way my doctor wants his office. By the time I saw my specialist, I was already seeing spots and lines and wanted to get out of his office as quickly as possible. I would go through some of the things on my list and be glad to get out of the illumination nightmare as quickly as possible.

There was too much going on in my life during my summer visits with one of those visits being the worst visit I’ve ever had with a doctor (not because of him). Before this last visit with him, I realized I needed to go into his office with several different communication plans so I would definitely talk with him and only him about the lighting.

I found the plan that was appropriate for that visit. He defused me in a kind of lousy way, but at least I brought it up to him and will again during the next visit.

His first quick remark was that the lighting sucks. Then his off the cuff sarcastic comment was basically around funding. Really? I’m funding my visits to him every time I go there plus taking a day off of work. My two hour trip has easily turned into a three hour trip both ways plus parking is not cheap in this city either. My doctor is very good and works very hard, but I also get charged for every little thing I request.

His next statement was that they may be moving their offices to a different location in the hospital. If or when that happens, the lighting will be taken care of and be much better. But what about now?

I will talk more about the lighting during my next visit. I am half contemplating bringing in boxes of incandescent bulbs for the waiting room too. Honestly, I don’t get the hypocrisy between these Migraine triggers.

How is the lighting in your Migraine Specialist’s office? Is it dreamy like it should be or nightmarish like my doctor’s office lighting? How would you handle this ludicrous situation if it were your doctor?

Sunday, December 9, 2012

Migraine App and Giveaway Winners

I’ve had a little over a month to try out the new My Migraine TriggersTM app which was developed by the makers of Excedrin® Migraine along with a leading neurologist who is well respected in the Migraine field. This app is available on iTunes for free.

Unfortunately, I’ve had plenty of opportunity to test out this app. I’ve also shown a few people how easy the app is to use and where they can go to download it for themselves. Don’t tell my sister I said this, but she was actually able to download this app by herself and found it pretty easy to use too.

My sister liked the way things flowed from one screen to the next; they seemed logical, easy to maneuver around and simple to add anything she wanted to within the different areas. The only feedback she had was that when she would enter in her Migraine after it started, she didn’t know how to answer the question ‘How long did it last’ since her Migraine was still going on and hadn't completed yet.

How well did the app work for me? Overall, I really liked the app too. It’s so much easier to keep track of my Migraines using the My Migraine TriggersTM app than trying to write everything down in the heavy planning calendar that has limited writing space which I carried around before testing the app; to help keep track of my triggers, symptoms, medications and pain levels.

I liked the way I could track possible triggers, to see if they may be delayed triggers that could take up to 48 hours to trigger a Migraine.  This feature may be more helpful for me when I get my Migraines under better control, but it’s something that my sister can use now.

The My Migraine TriggersTM app is real easy to use and has the flexibility to add what we need to any of the areas we should track especially since we are all different and have our own tracking needs. I like the quick charting capabilities where I can simply see potential triggers I’ve been exposed to and pain levels experienced in a pie chart format while the percentage of triggers I was exposed to 24-48 hours before a Migraine, symptom frequency and pain locations were clearly read in a bar chart format.

I found I could put my preventative medication changes in the notes section as well as anything else of special interest to me or my doctor. Everything I put into the My Migraine TriggersTM app also reports out in a diary log. This diary and the graphs can be printed out or emailed wherever you want.

I mentioned in my first post about the My Migraine TriggersTM app that I also keep a spreadsheet. This spreadsheet has grown over the years and gives me a lot of what I like to see around my Migraines, but it is also missing things that I would love to see in a Migraine app.

I currently have two graphs on my spreadsheet which track my Migraine evolvement over the year. It graphs them month-by-month and week-by-week where I can see some very interesting things that have happened over this period. It also includes trend lines so I can easily tell the progress of how my Migraines have been going.

There are two important items where my spreadsheet falls short and I would love to have an app take over these holes. I need to track my FMLA usage and find a way to track my MIDAS scoring. I feel both of these items would be reflective of how I am coming along with my Migraine management and my doctor asks for MIDAS with every visit.

I’ve adapted my spreadsheet for some things my Migraine specialist requires – it will calculate average number of Migraines and intensity level per month as well as the average number of Migraines and intensity level per month since my last doctor’s visit. It will also highlights the most severe Migraine and the number of times I was at that level since the last visit. For me, it also keeps a running total of the medications I’ve taken on a MTD and YTD basis. My spreadsheet doesn’t touch FMLA or MIDAS yet.

Since I’ve never really tested a Migraine app on a small device before, I can only give a wish list that I don’t even know if it is too outrageous to ask for from an app. In addition to FMLA and MIDAS, I would want to be able to export the data into a format I could use to import into my spreadsheet or use wherever else I would see fit. I’m not sure if I’m ready to give up my spreadsheet yet. The other small area I would want to see improved on the app is that the report currently does not list the medications I’ve tried and put into the app.

Now for the fun part as congratulations go out to the winners of the Excedrin® Migraine Relief Kit giveaway. First of all, I want to thank everyone who participated by commenting on my blog. The two winners, who were chosen at random, are Pam West and Snubs. Pam and Snubs, please contact me through MigrainePuppet at gmail so we can make arrangements to give you your Excedrin® Migraine Relief Kit.

Overall, I have to say that I like the My Migraine TriggersTM app so don’t forget to download it from iTunes to try it out for yourself. Also, stop by the Excedrin® Facebook page and on Twitter to help you with your Migraine journey.

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

Wednesday, November 28, 2012

Track Migraine Triggers

I had been testing the My Migraine TriggersTM app for almost a week before I went to NY for its official unveiling. The makers of Excedrin® Migraine developed this app along with one of the top Migraine neurologists (one who I’ve written a little snidbit about in the past) which is available for free on iTunes.

While I was showing some people the app, the comment was made about how big of a trigger sleep must be for me since that took up a large piece of the pie chart the app offers. The picture of my pie chart as it appeared on that day is pictured above.

I will admit that the items in the chart can be big triggers and exasperating factors for my Migraines. It was a busy week with a Migraine every day. During this trial time, I still had a few cold nights without power because of the hurricane, we had a snowstorm before the power was even restored and this was still a very stressful time.

Those triggers are easy to identify and track. For me, it’s harder to identify the not so obvious triggers such as some foods.  Did you know that food triggers can trigger a Migraine up to 48 hours after you consume the food?

The My Migraine TriggersTM app has the flexibility to add in the foods I eat so I can track them on days I don’t even have a Migraine to see if they may be a delayed trigger. It’s easy to add foods or anything I might want to track.

I can add the foods I eat and track other possible triggers by putting in a new entry every day and answering the question 'Did you have a headache?' with the answer 'No, I did not'.  I can track the foods I ate that day, barometric pressure changes, temperature changes and really anything I want because of the app’s flexibility.

By entering a comment to this post or my previous post, you will be entered into a drawing to receive one of two Excedrin® Migraine Relief Kits. Winners will be selected at random when you enter any family friendly and non-commercial comment to my blog post. This kit contains the following items that can help manage some common Migraine triggers or exasperating factors:
• Sleep mask
• Noise cancelling ear buds
• Branded stress ball
• Herbal compress
• Branded water bottle

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

What’s your Migraine relief story? Everyone is different and we all find our own way of trying to deal with our Migraines. Share your story and knowledge of how you treat your Migraines and you could win $5,000. All of the prizes, details and official rules can be found on the Excedrin® Facebook page.

Did you know that less than one-quarter (22%) of women surveyed find their current tracking method effective in managing Migraines?

Besides foods, weather, stress and sleep patterns like me, what other things would you want to track to help you or someone you know try to manage their Migraines?

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

Thursday, November 22, 2012

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 TriggersTM, 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 TriggersTM 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 TriggersTM 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.

Sunday, November 4, 2012

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?

Sunday, October 28, 2012

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 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?

Thursday, October 25, 2012

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!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.

Saturday, October 20, 2012

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. 

Sunday, October 14, 2012

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?

Saturday, September 1, 2012

Did Botox come at the Right Time?

How do you know if a new preventative is working or at least helping a little bit? I tried my first round of Botox in June and I think I can answer that question.

I’ve read where it’s hard to judge how well Botox will work based on the first round as it can be so hit or miss and that hopefully subsequent rounds can be more effective; that additional rounds of Botox can build on the Botox you already had which can help it work better for those who Botox will help.  I hope so.

The toughest part about my first round was having my neck get adjusted to the Botox as my neck was super sore for about two weeks after as my other neck muscles needed to strengthen up to take over for the muscles that were affected by the Botox. I had anticipated the ‘frozen’ forehead so that didn’t come like the surprise of the sore neck muscles.

I have to say that I have been unintentionally testing Botox since I received it. At first, I felt almost forced to reduce one of my medications since I could no longer deal with its cognitive side effects.

My mind has always been something I could count on, but these side effects grew to the point where it was hard for me to trust my memory, hard to be in a constant fog, to write down everything just to forget where all the little notes were and to basically feel too disheveled. Botox helped enough this first round to allow me to manage this medication change without my Migraines getting worse.

I’ve been met with a few unavoidable triggers that could have made things much worse too. It seems like we’ve had a lot of thunderstorms this summer. I feel like the Migraines managed these storms better than they have in a while and I think better because I had the Botox which is really the only explainable difference for me.

My biggest challenge came about a month after receiving Botox and continues through today; everything started hitting the fan then. My husband has been in the ED and admitted to the hospital three times since then. Of course there is a lot of stress that comes with this, but there are lots of other triggers associated with it too. There are the lights in the ED, the hospital rooms and the different smells to contend with in this closed environment. Although we may be able to control a little corner of this space, we can’t regulate much of it.

I also found that I needed to learn and do many things at home that I didn’t need to worry about before. I had to figure out the on-line addresses where all of the bills were paid. I needed to figure out how to apply for a student loan from soup to nuts. I needed to figure out all of this new healthcare stuff I was about to be inundated with from everywhere. I needed to figure out an old tax return as we were being audited on one of our old returns.  I needed to get my younger son back to school early even though he was not cleared to play football this year as he was officially put out for the season due to the concussion he sustained during their spring season.

Not only were there other personal stuff I needed to take care of, but it was a very time intensive solid deadlines period at work too. I know it’s easy to say that home and family have to come first, but there is also that balancing act that always has to be done especially when you feel like you are continuously walking on a thin tightrope at work already. Not only that, but if I didn’t get my work-work completed, it would have adversely affected the people that report to me and how could I let that happen to them?

Can you say too much stress and too little sleep (another huge trigger) while trying to do everything except for really taking care of myself? But what was I supposed to do? What should I have done or not done? I do have to say that my boss made things as easy for me as possible which helped tremendously.  I honestly don’t know what I would have done if I had a different boss while trying to work through this time.

Anyway, back to Botox. I don’t know that I could have made it this far if I didn’t try it at the time that I did especially because it allowed me to reduce the medication that was affecting my thinking and mind clarity. Botox decreased the number of Migraines I got slightly, but I think where it made the biggest difference so far with this first round is that it allowed me to keep my productivity up more. Between being able to decrease the one medication, getting rid of the fog and not having an increase in Migraines, I have to conclude that the first round had a positive effect.

I have felt the Botox wearing off over the last few weeks and can’t wait to try the second round as I hope to have even more success. Unfortunately, my doctor needed to delay my next Botox appointment and I will continue to count the number of days until then. Each week gets a little tougher and I fear going back to the state I was in before I tried Botox when I was getting really bad with increased Migraines and was generally having a very difficult time coping with everything.

As silly as this may sound, my advice would be to get to know the things at home that you don’t normally handle or know a lot around. You don’t need to be an expert, but you should have an idea of where things are (websites, passwords, etc.), and how to take care of them – just in case. It would make it much simpler and less stressful for you if that time ever came that you needed to take on the additional responsibilities that someone else handles right now to make things easier on you.

As you can see, Botox has been super challenged this first go around. I am encouraged by the results especially the increased productivity I feel I have gotten so far while on it. I felt more like my old self and am hoping to get even better results from subsequent rounds. I still countdown the days until my next Botox treatment as I feel the Migraines squeezing tighter every day. I can’t wait for them to hopefully loosen up again and go away from the next Botox treatment.

How well did Botox work for you during your first round? Did it get better or worse with additional rounds? Did you have any extra challenges during your Botox trials?

Sunday, July 22, 2012

Sleep Apnea

I’ve read about Migraineurs needing to take a sleep study due to the possibility of sleep apnea. I wanted to give you another reason to make sure you take the sleep test.

For years, I have been telling my husband he has sleep apnea. Yes, I know I was diagnosing him, but I wanted him to get it checked out by a real doctor. Somehow, he always knew better and just dismissed what I had to say despite his very classic symptoms. He would snore loudly, have breathing cessation and would abruptly take his next breath. Just to make it clear, none of his symptoms were subtle.

Sleep apnea finally caught up with him. He spent the last week in the hospital. In case you didn’t know it because we certainly didn’t, sleep apnea can lead to right-sided heart failure. Yes, he had all of the classic symptoms of heart failure too and we still needed to tell him he was going to the ER and didn’t have a choice.

Because he never had his sleep apnea looked at, he has many more issues to deal with now or should I say we have many more issues to deal with now. MedlinePlus gives a good explanation of what typically causes this type failure.

Normally, the left side of the heart produces a higher blood pressure in order to pump blood to the body. The right side of the heart pumps blood through the lungs under much lower pressure. High blood pressure in the arteries of the lungs is called pulmonary hypertension. The right side of the heart has a harder time pumping blood against these higher pressures. If this high pressure is present for a longer period of time, it puts a strain on the right side of the heart.

What I have found tough this weekend is trying to get help him, get him setup at home and caring for my Migraines which, of course, have been out of control. I usually take much better care of myself on weekends so I can make it through the workweek. How do you manage your Migraines when you are trying to help someone else get through their own health difficulties?

If you are asked to do a sleep study for your Migraines or even just because you might have sleep apnea, it is better to get your study done and take care of what needs to be done so you can help your Migraines and the rest of your body too. Please don’t keep putting it off.

Saturday, July 7, 2012

Migraine Accommodation Pictures

I’ve talked about some of the accommodations I have for Migraines for a while now. I’ve also said how I am a visual person and believe a picture is worth a gazillion words.

I have recently taken pictures of a few of the accommodations I have and wanted to share them with you so you can see what I’ve been so excited about. I just hope the pictures are clear enough to display how awesome they really have been as I am by no means a photographer and just started taking any pictures this year. I also needed to turn on that flash component which I swore I would never use.

The first picture I have will be a demonstration of the knee pad in my car. I really don’t like this picture as it can hurt just looking at it, but I think you can relate to when the sun is shining through the driver’s side window and your visor just does not do the job.  The visor is just a little too short given the angle of the sun.  Ouch!
As I was in my car one day and found myself in this very predicament, I remembered that I had a simple knee pad in the car. I thought it was the right size and shape.  It was and fit perfectly on the end of my visor! I didn’t even have to worry about how to attach it since that is part of its makeup. It never leaves my car now and I've been keeping it busy at work protecting my head, not knee ever since.

The first picture above was also taken where you can see the driver’s side window of my car which was legally approved to be medically tinted at a 60% Visual Light Transmission (VLT). I would have preferred a little higher VLT percent because that would allow less light to come through, but it does help with the everyday light. Tinting Laws do vary by state so you probably want to check the laws in your state if you want to tint your car windows. My back windows have a higher VLT, but that doesn’t help me when I am driving and the sun shines directly on me as in the picture above.

I also believe there needs to be a nice balance between the VLT that we use on our front windows because we will have this same tint when we drive at night which could make it much harder to see. I still like my tint and want my next car to have tinted windows as an accommodation too. The chart above shows the different VLT percentages. You can see how it gets darker as the percentage increases.

My cube accommodation at work is what I couldn’t live without since this is where I spend most of my time. I also have a very hard time when I leave the safety of my ‘cave’ and either end up putting on a good front, only go out for short spurts at a time, wear a hat, get a Migraine I can work with or end up having to go home. I hope this picture does my accommodation justice as I don’t think I work in as dark of an environment as it may portray. I really do have plenty of light and actually have extra light sources that I have NEVER used.

I want to point out a few things in the picture of my cube. First and foremost, I will start with the lights. The picture to the right is an excerpt of the lights. In the two purple (for Migraine awareness) circles, you should see spotlights. The spotlight over my cube (on the left) has been disabled while the one over the cube behind mine is shining in all of its glory.

The other light in the picture that has the purple arrow pointing to it has light sleeves over the fluorescent light tubes. These sleeves reduce the light output as well as decrease some of the lights flickering effect. They are solid colored about a third of the way and then transition around to a clear color. The sleeves can be twisted around the bulb to allow different amounts of light to pass through.

I’m not sure if you can see the mug in my work cube. It’s one of my fun Migraine mugs and a way to help support advocacy efforts. Each item that is sold in the shop is designed to let us have some fun while making serious points. There are clothes, coffee cups, iPad sleeves and much more. The best part is that all proceeds from sales are donated to non-profit organizations for Migraine and headache research. Although I don’t drink coffee anymore, I use my mugs for water, an occasional tea and plenty of conversation. I love the different sayings you can get on the various paraphernalia you have to choose from.

I have a whole bunch of hats that seems to be multiplying. My family has even started giving me hats as gifts! I always have a hat in my purse, I keep one in my desk at work and even keep a bunch of them in a bin in my car where they are always readily available. I really like my hats as they are very comfortable and large enough to fit my big head.  My hats are big enough that they don't add any extra pressure to an already tender head either. I am not a photographer and hope you can make out some of my neat hats. There are even hats with sparkles in there which is something many would not consider my style.

The last picture I have today is the rolled up towel behind my rear view mirror. I think it's a little hard to see, but how many times do you drive down the road with the sun glaring between your two visors? As you can see in the pictures, the towel fills in the gap between the two visors nicely and makes a much more pleasant ride.  The top picture shows the visors up while the bottom picture shows the towel neatly tucked behind not only the rearview mirror, but also both visors.

There are some people who don’t understand my accommodations to the point where I still get funny looks or comments, but I don't care as I would not be able to make it through my day or drive without them. I hope these pictures were able to help you see what I’ve been talking about all of this time. Did the pictures help?

What other accommodations or devices do you use to help with your Migraines? 

Wednesday, July 4, 2012

How Not to Handle a Concussion

My youngest son is headed into his final year of college this fall.  However, it looks like he may have played his last football game this past spring, but he should be finding out more after additional upcoming neurologist appointments.

He was hoping to at least remember the last organized football game he ever played, but it seems like that is not going to happen. College football has spring practices and then ultimately a spring game which is like an intra-squad game with a lot of strange scoring rules.

It was during this spring season and an internal game that my son received his concussion. He was tracking to have a very good year, but if you go out for one pass and hit your head hard into the ground, that can change many unfinished plans.

There are a few things around this whole incident that were not handled correctly and really infuriate me as a mom and especially his mom.

My son was able to review the play afterward on films. After the play, he could see he was laying still for a short time on the ground. He now believes that he was probably unconscious for even a few seconds during that time yet nobody came out to check on him and even left him in for another TEN plays. He had no idea what was going on during this time.

After the plays were over and when he got to the sideline on his own, his teammates noticed he was talking and acting strangely. They directed him to go to the athletic trainer. He got lost going the twenty or so feet over to him.

When they finally hooked up, the trainer did the right thing and told the coaches LittlePuppet was through for the day. Considering he couldn’t remember getting to football that morning, making his way to the sideline after the plays, he still thought it was spring break which was three weeks earlier, he couldn’t remember most of the day before and so forth; I would say the trainer made the right call about being finished for the day. At this point, nobody really knew what happened to him on the field, but he obviously had a serious head concussion.

The next step makes my blood boil. The trainer gave my son a few ‘simple’, but very dangerous steps to follow on his own. He wanted LittlePuppet to go to his dorm, take a shower, get a bite to eat at the cafe and meet the trainer back at his office. Deep breath…

My son would have needed to cross a busy road; by himself with a new head injury. Not only that, but about a month earlier, there was a student who was hit and killed by a car on that road. Enough said.

The trainer was sending my son, with a fresh head injury, back to an empty room ALONE. Enough said.

How would LittlePuppet be able to follow the ‘simple’ multi-step instructions the trainer gave him if he could not find the trainer who was a mere twenty feet from him on the side of the field? The answer, luckily he couldn't manage any of it.

Coincidentally, I received the phone call from the trainer about my son’s head injury as I was on my way to pick him up from school. I could not comprehend everything the trainer was saying and I was still forty-five minutes away from the school. The trainer had examined my son and decided to wait until I got to the school so I could take my son to the ER to get checked out.

After I made it to the school, my son was definitely not himself. He is usually very quick mentally, but he was not remembering much from that day at all and repeating everything he said. After we got to the ER, I was questioned by them about why the school didn’t send him to the ER right away. The people in the ER were great. Although there was a waiting line to register him, they took us in right away and brought us back into one of their critical care rooms.

The ER answered all of our questions and did a CT Scan that let us know he didn’t have any ‘bleeders’ in his head which would allow him to sleep as peacefully as he could that night; we didn’t have to keep waking him up as you always hear about with concussion patients which would help him heal.

My son has been back to the neurologist a few times since then and will be returning again next week. ‘Little’Puppet said it was funny when the neuro ordered the MRI. He said he didn’t fit in the machine and needed to squish his shoulders up to try to round his body off more. They were finally able to get the pictures they needed. What do you do if you don’t fit? I guess that’s where the open MRI comes in handy?

Since LittlePuppet still experiences symptoms from this concussion he received a few months ago, he has not been cleared to return to football yet. As the regular season is approaching, it looks likely that he will not be able to play football with his team this fall. This is also a little tough for him because he came into football camp last summer with a severly sprained ankle while getting in shape for camp and missed most of last season.   He is coming to terms with it, but he knows he will need his head and thinking capabilities for life. He knows that is the most important thing he really has to worry about.

One more thing about the school and his concussion which I have not mentioned before that is very important and probably pertains to his concussion or at least contributed to the degree of concussion he received. My son had a defective helmet.

With football and especially as the programs get more advanced where the players are bigger and stronger, the equipment must be top notch.  Some inside pads of football helmets are filled with air to make sure they fit each player snug. However, my son’s helmet needed to be topped off frequently – something I didn’t learn about until after. You can’t have defective equipment especially when it comes to your helmet and protecting your head!

I’d love to know what was discussed at this years American Headache Society Meeting about sports helmet design improvements which just concluded in June. Our children need the best equipment and helmets to give them the most protection.

There were too many errors made in the handling of my son after his concussion. Although he is still experiencing symptoms, I am glad things are not worse because there could have been terrible consequences to some of the actions that were asked to be taken.

Sunday, June 24, 2012

Let's Do the Monster Mash

Migraine Awareness Month #12: "Let's Do the Monster Mash!" Choose a movie monster that reminds you of your Migraines and tell us why.

This is another challenge that I started in the past and finished today. I am stretching this a bit and hope I can make the connection to my movie monster.

My movie monster is Mommie Dearest. I’m really looking at the “wire hanger” scene and don’t want you to get the wrong impression either. I don’t feel like I’m a bad mom and have never beaten my boys with a wire hanger or anything like that.

I chose this “monster” because sometimes I feel like Migraines can make me want to act like the mad monster person like Mommie Dearest is portrayed as in the movie. I don’t know anything about the real “mommie dearest” so I really can’t speak to whether she was a true monster or not.

In reality, I couldn’t imagine screaming at the top of my lungs like that with a Migraine (or even without one) as I think my head would explode although theoretically, it seems like it would be a nice way to get all of that built up frustration from having a Migraine out in the monstrous way of screaming and throwing things (without a child in the area) around.

I can actually imagine screaming things (quietly) at my offensive trigger or aggravating situation like:

No more fluorescents lights! What are fluorescent bulbs doing in this house when I’ve told you no fluorescents lights ever! What are fluorescent bulbs doing in this house! Answer me!  We’ll see how many fluorescent bulbs you have in this house!  Why? Why?  You live in the most beautiful house in Puppettowne and you don't care that it will be ruined by fluorescent lights!  You don't care!

No more huge barometric changes! ...
No more bathing in scents! ...
No more air horns! ...
No more doctors that don’t listen! ...
No more ERs that think we’re drug seekers! ...

I think I feel better screaming that out on paper. I’m sure you can think of my more shout outs for your “Mommie Dearest Monster”.

National Migraine Awareness Month is initiated by National Headache Foundation. The Blogger's Challenge is initiated by

Migraine Awareness Month #24: Dear Genie

Migraine Awareness Month #24: "Dear Genie."  Put together a wish list for your life.

I’m not going to shoot too far into the stars or anything outrageous like that and make a long wish list. My main little wish would be a cure for Migraines.

Since we would still need to see doctors to receive this cure, I would also wish for doctors and a healthcare system that understood Migraines. Someone and someplace we could go to, to talk intelligently about Migraines until we could get our cure from Migraine.

National Migraine Awareness Month is initiated by National Headache Foundation. The Blogger's Challenge is initiated by

Saturday, June 23, 2012

Name That Tune

Migraine Awareness Month Blogging Challenge #6: "Name That Tune!"

Choose a theme song for Migraine disease or your headache disorder. See if you can find a YouTube video of it for your blog post

I had started writing some of the challenges earlier, but couldn’t finish or post them. I’m posting the Migraine Awareness Name That Tune challenge today.

I chose the chorus to Satisfaction by the Rolling Stones:

I can't get no satisfaction
I can't get no satisfaction
'Cause I try and I try and I try and I try
I can't get no, I can't get no

How many ___*_____ have we tried and gotten no satisfaction?
*rescue meds
*ER visits
*steroid packs

How many people have we tried educating and gotten no satisfaction?
How many people have we tried to get to listen to us with no satisfaction?
How many ___**_____ and gotten no satisfaction?
**fill in the blank

Can you fill in the blank?  There are so many ways we have gotten no satisfaction with our Migraines and our attempts to keep making our lives better.  But, we have to keep trying ...

National Migraine Awareness Month is initiated by National Headache Foundation.  The Blogger's Challenge is initiated by

(I'm just focusing on the chorus)

Friday, June 22, 2012

LED Testing

I feel like I keep attempting different things to try to help with my Migraines. The last thing that I tried was to finally test the LED bulbs.

I’ve been following LED bulbs since about 2008 when I first found out about them and even signed a petition then when the government decided to mandate the phasing out of incandescent light bulbs. I already knew that I did not react well to CFL bulbs which were the only viable alternative.

LEDs have been cost prohibitive for years. I have been watching the prices drop. Week after week while shopping at the supermarket, I would check the supermarket shelves to see if they stocked them there yet.

Two weeks ago they were finally in the supermarket plus they were marked way down if you used your super shopping card. It put it into a reasonable price range to finally try an LED bulb. I couldn’t wait to get home, rip the bulb out of the package and put the bulb into a socket.

I couldn’t believe it! In less than fifteen minutes, my whole face went numb and I was very nauseous. I usually just have half of my face go numb after being exposed to the CFL bulbs. I wasn’t expecting to have any reaction as LED bulbs aren’t supposed to have any type of a flicker. I don't know why the reaction.

I guess it's time to go back to the drawing board with light bulbs. In the meantime, I will continue to make plans with the old incandescent bulbs.

Have you tried the LED bulbs? How did you make out with them? Did you have any reactions?

Wednesday, June 20, 2012

Migraine Behavior

I still say that sports is a very good way to communicate to some people about Migraines and what it’s all about. There was another example that went out today that really got some conversation and education going on at my work today.

We have a guy at work who doesn’t sit far from my desk. He was completely amazed by the article he was reading which was about the Texas Rangers announcer Dave Barnett. While Dave was announcing a televised game recently, he started saying something about how the go-ahead run was at "fifth" (base) and rambled on about a "botched robbery" and something about a "henchman."

The guy at work couldn’t believe that a Migraine could be behind this kind of behavior. Of course I could smell the opportunity for a little education!

It was nice in that he was really receptive and the lady right across from him was able to add in valuable information as well. We also talked about and reminded him of the episode that happened to Serene Branson during the 2011 Grammys while she was on air. Aphasia can happen during the Aura phase of a Migraine where we can have problems finding the right words during an attack.

This article on the sports announcer sparked a lot more conversation around other symptoms of a Migraine attack. He kept saying he couldn’t believe this was all part of a Migraine that he thought a Migraine was someone with a very bad headache who had to go to a dark room to get better.

With a little twist on the article One Person with Migraines Can Make a Difference, knowing this sports guy at work, he will be telling other people he knows, including other sports nuts, about what he learned today and basically because he still won’t be able to get over that he didn’t know that Migraines can make someone talk funny and all the other ways that Migraines affect the brain and other systems in the body.

We need to get the word out any way we can; even if it’s one person at a time.  This conversation never would have occurred if this sports guy did not read about this visible sign of a Migraine Attack in a sports section on the internet.

Sunday, June 17, 2012

Botox Bantering

It’s been almost two weeks since I had my first Botox treatments. The experience has been very different than I expected.

The office visit was unremarkable. It was actually a very quick visit and probably one of the fastest I’ve had in a very long time. We knew if the Botox was approved that this would be the course of action I would receive this appointment.

The needles were very small. Throughout the Botox shots, the doctor and I bantered nonsense back and forth. I even told him that this bantering was supposed to keep my mind off of the process he was doing. He chuckled. To me, the shots were nothing especially since when I was younger, I was stung by more bees at one time than the number of shots of Botox I got.

The first side effect I had went away pretty quickly. My front teeth and the tip of my tongue went a little numb. That never returned after the first day. I have been getting more ice pick headaches; I really haven't had any in a very long time before this treatment.

The biggest side effect I’ve gotten is neck and shoulder pain. I felt like my neck ran a marathon. I don’t think it had to do with the actual shots as my forehead and the sides of my head didn’t bother me like this at all. Typically your neck will receive about ten different shots and the shoulders will get about six; three on each side. The injected muscles are supposed to no longer contract or spasm which is one of the ways Botox is supposed to work.

My neck was fine for the first couple of days, but after that, the muscles were like they were sore from not being used in a while; kind of like your muscles feel at the beginning a sports season when you first start working out again. I don’t know if it was different muscles taking over for the ones that no longer contract, but that’s what it felt like to me.

The other weird sensation I had is that I my forehead felt like it was "after" sunburn. What I mean by that is it didn’t hurt like sunburn, but like after you have sunburn, your skin feels kind of funny and feels like it moves funky too. It kind of feels like it’s not really your skin, but it is. I hope that makes sense. I'm just glad my eyebrows still move! :^) The sore neck and "after" sunburn forehead feelings have mostly gone away.

It’s still a little early to tell how it's going to effect my Migraines and it’s only the first round of Botox. I want to remain optimistic that it will help. I really hope so.

More to come…

Saturday, June 16, 2012

Migraine Awareness Month #16: Lead, follow, or get out of the way

Migraine Awareness Month #16: "Lead, follow, or get out of the way." Which role fits you and why?

Honestly, I have to say I fit all three roles. I once had a boss who gave me a cartoon that sums me up. It was one of those Maxine cartoons – that funny old lady cartoon.

It said something like this: “Do not walk in front of me for I may not follow. Do not walk behind me for I may not lead. Just leave me alone.”

This was given to me way before I knew my Migraines were actually Migraines, but I think it explains a lot about me and my Migraines. Depending on what stage my Migraine is at, I may lead, I may follow or I may be beside you. If the Migraine is really bad, chances are I want to just be left alone.

I think my blog shows examples of the different roles I have fit into along my journey. There are times I am leading the way with a fresh idea or leading someone new down a path to follow to help them. If I come across great leaders, ideas, plans, articles or documents, I will follow them in an attempt to help myself and share to help others.

My favorite part is when we can all work together to accomplish a goal or as Steven Covey would call it in his sixth habit, synergy. This is the habit of teamwork and finding new solutions to old problems together. Where people bring all of their experience and expertise to the table and collectively the results will fare better. Although I do more ‘get out of my way’ lately, luckily there are a lot of people around here who have good synergy and are always looking for more people to jump in with great ideas.

National Migraine Awareness Month is initiated by National Headache Foundation. The Blogger's Challenge is initiated by

Monday, June 11, 2012

Migraine Awareness Month #11: Say What

Migraine Awareness Month #11: "Say What?!" What's the most ridiculous thing ever said to you about Migraines, who said it, and under what circumstances?

There are so many different comments we’ve all heard, but I’ve decided to go the doctor route on this one. It was this doctor’s way of trying to push me into retrying a medication for the THIRD time - on my first and last visit with him.

Instead of saying anything of any intelligence to me after hearing my hesitation about retrying a medication, the doctor said “You can keep doing what you're doing or retry this medication.” Say what?!

First of all, if I wanted to “keep doing what I was doing,” I would have stayed with my last incompetent doctor and not sought him out.

Second of all, if the medication didn’t work the first two times at the exact same dosage, why would it work now with no other changes?

Third of all, at that point in my Migraine treatment, I had only tried a couple of different medications; not even enough to count on one full hand. Why in pray tell would he be going back to a medication that has already failed not once, but twice before.


National Migraine Awareness Month is initiated by National Headache Foundation. The Blogger's Challenge is initiated by

Sunday, June 10, 2012

Migraine Awareness Month #10: Name the Spokesperson

Migraine Awareness Month #10: Name the Spokesperson. Choose any celebrity to represent Migraine (whether they have Migraine or not) who would it be and why?

I have to go down the sports path. I have been in contact with a lot of idiot coaches who feign to understand all of this ‘head’ stuff. I think they need to keep getting knocked by professional athletes who seem to truly get it.

My choice is Sidney Crosby of the Pittsburgh Penguins hockey team. He is one of the best hockey players in the NHL and was taken out of play for an extended period of time due to a concussion.

Crosby received his concussion in January 2011 and did not return for the rest of that season and actually didn’t end up returning until late the following season. After playing in his first seven games, some of his concussion symptoms returned so he took himself out again until he was completely symptom free again.

To give you an idea of his hockey worth around this time, he set an NHL record during the season he was taken out for having the most points for an NHL team in the fewest amount of games played. He also scored the winning goal in the 2010 Olympics in overtime to give Canada the gold medal win. He truly understands the value of making sure your head is completely healed from its injury before returning to play.

Sidney Crosby had been through the battles of a lot of people giving him pressure to return to play when he knew what he needed to do for his health. I think Sidney Crosby would be a great spokesperson for concussions.

National Migraine Awareness Month is initiated by National Headache Foundation. The Blogger's Challenge is initiated by

Saturday, June 9, 2012

Migraine Awareness Month #9: Day Dream Believer

Migraine Awareness Month #9: "Day Dream Believer." Describe your dream day - without a Migraine to hold you back.

I would have to be outside on a bright sunshiny day with my boys and family. No hats or sunglasses would be a rule for the day too. I would have to be free to enjoy the beautiful day – no barriers.

Of course there would have to be the outdoor barbeque and games. Exertion and alcohol wouldn’t be a problem on any front. No, I still wouldn’t overdo the booze as I would want to remember every minute of my dream day.

I think the bottom line is I want to be free to eat, drink, play and be outside to appreciate a nice day without any head worries while enjoying friends and family.

National Migraine Awareness Month is initiated by National Headache Foundation. The Blogger's Challenge is initiated by

Migraine Awareness Month #8: Let there be light

Migraine Awareness Month #8: "Let there be light." Most Migraineurs have issues with light sensitivity. What do you do to cope with it?

Yes, you could say I have issues with light and have had many people joke about my “cave” at work. I really don’t mind as I tease along with them and know I couldn’t survive at work without my workplace accommodations. Besides, my desk is cave like; just the way I like it!

I have done a few different things to try to cope with the lights. Many of the things I have tried, I have gotten bizarre reactions from people, but I really didn’t care because it was really a huge help for me.

Here are some of the things I have done to help or try to help me:

* Tinted my car windows.   Laws do vary by state so I did need to get a medical exemption from my state.
* I have light accommodations at work where they put these marvelous light sleeves on the fluorescent lights over my desk.
* I can wear hats at work as an accommodation.  This might not sound like much, but my company has a policy against wearing hats. Hats have been my savior in many situations.
* I have called hotels to see if they could switch their CFL light bulbs to the incandescent bulbs. I have also brought incandescent bulbs with me in my car and even took them with me on an airplane!
* The brightness on my computer screens are set as low as I can manage it, all of my backgrounds have been changed to be an off white color and I have a filter on my monitor.
* I have a small rolled up towel that I put behind the rearview mirror in my car. This blocks the sun from coming directly through between the two visors of the front windshield into me.
* I use a knee pad at the end of the driver’s side visor when I have it against the driver’s side window. This blocks the light at the end of a short visor.
* I’ve gone church hopping to try to find the right church I could sit in. I actually ended up back at my church in a ‘votive’ room wearing a hat in mass every week.

Oh boy, I hadn’t realized how many alterations I have made because of lighting and I’m sure I’ve tried more that I didn’t even mention here.  I'm always willing to try more!  Anyway, this is the way I have coped with the lights.

National Migraine Awareness Month is initiated by National Headache Foundation. The Blogger's Challenge is initiated by

Saturday, June 2, 2012

Migraine Awareness Month #2: Tea for Two

Migraine Awareness Month #2: Tea for Two. If you could invite someone (any living person) to your home for tea for the purpose of explaining Migraine disease to them so they would truly understand it, who would it be and why?

This one was hard for me to come up with someone to invite to tea. I could think of so many different people. Many who believe they understand, too many in the healthcare profession and some who are doing the best they can while still trying to learn about Migraines. I also went down the celebrity path as they could spread the word to a large amount of people. I ended up having tea with someone I didn’t even expect.  Me.

The person I seem to have the most problems with right now is me. I am not always a good listener and tend to push other people away from helping me. I can be too independent sometimes for my own good.

Although I have gotten better, I still have a hard time with the work/take care of myself balance of Migraine management. This year has brought on tougher to manage Migraines; I need to listen to me.  I have a lot to teach me about how Migraines can be a progressive disease.  I must also let those around me, who want to help, help me.  I can't be superwoman during a Migraine attack.

We have a lot to talk about!  I think I can survive this conversation, on both ends, with myself over tea.

National Migraine Awareness Month is initiated by National Headache Foundation. The Blogger's Challenge is initiated by

Migraine Awareness Month #1: Your First for the First

June is Migraine Awareness Month to help make Migraines more visible which was initiated by the National Headache Foundation.

There is a blogging challenge for the month to blog every day of the month on a prompt for the day to bring on each of our viewpoints on the topic. If you get stuck on a particular topic, there are a few extra topics at the bottom of the list which can be used as substitute topics. Please join if or when you can!

I will be intermittently participating in the Migraine Awareness Month Blogging Challenge in June.

The first challenge is:  Migraine Awareness Month #1: Your First for the First. Share the story of your first Migraine, what it was like, if you knew what it was, what you did, how you felt.

I first went to the doctor for head pain when I was around six years old. I can still remember the doctor telling my mother and me, “They’re just headaches. There’s nothing we can do about them.”

For me, that put my coping mechanisms into overdrive to which I was not officially diagnosed with Migraines until about thirty-seven years later after I had an incident at work which forced me to look into these terrible just headaches. I could also remember many times before this episode when I would squeeze my head trying to make the just headache pain go down.

Because these headaches were starting to affect my work and this incident actually got me called into my boss’ office (for the first time ever), I remained motivated enough to research Migraines after my headache had calmed down a few days later.

It was amazing to read about Migraines. It was like reading about me. I didn’t really know anyone who had headaches all of the time or had excruciating head pain at times. It was so eye opening. In my amazement, I briefly mentioned to my boss that I thought I had Migraines.  (I didn't know that Migraines had a stigma attached to them!)

That was the best thing I could have done. He immediately started talking to me about Migraines. His wife has Migraines and actually took medication to try to stop them from occurring! Wow, I really had a lot to learn.

I still call my boss my first Migraine teacher and don’t know where I would be if he didn’t give me that personal foundation to my Migraine education. This is a big reason why education is important to me as I don't want others to feel so alone or not know what's going on with themselves.

National Migraine Awareness Month is initiated by the National Headache Foundation. The Blogger's Challenge is initiated by