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.

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? 

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 www.FightingHeadacheDisorders.com.

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 www.FightingHeadacheDisorders.com.

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?
*preventatives
*triptans
*rescue meds
*ER visits
*steroid packs
*etc

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 www.FightingHeadacheDisorders.com.

(I'm just focusing on the chorus)

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.

Really?!



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

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 www.FightingHeadacheDisorders.com.

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 www.FightingHeadacheDisorders.com.

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 www.FightingHeadacheDisorders.com.

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 www.FightingHeadacheDisorders.com.

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 www.fightingheadachedisorders.com.

Disruptive Vacation

(Picture taken through bus window)

It had been a long time since I had been on a real vacation and I was looking forward to the well needed break and rest. I was also anticipating some type of interruption, slow down or relief to my chronic Migraines.

Have you ever regretted going on vacation if the Migraine monster followed along?

I guess I’m more disappointed that I couldn’t get more relief and it probably didn’t help the others with me enjoy their time as much as they should have too. I was really expecting the Migraines to not be as bad as ‘normal’ and in some ways I think they were probably a little more over the top than usual. I had a Migraine every day and I know it didn’t help that hormones were a factor that got added into the equation earlier than they were supposed to.

Another issue I had is that I’ve enjoyed some plane trips where the plane ride actually aborted worsening Migraines. Not this trip. My Migraine kept getting worse on the plane and although I had already hit medication limits, I really needed to do something about the Migraine and was glad it was a red eye flight home.

(Taken from helicopter, see blade?)

I just finished posting pictures to facebook. One of my very good friends posted a question about if I had any Migraines while I was there. I almost feel like I not only ruined some time for those I was with, but now I am disappointing some of my good friends at home as they were pulling for me too. Stupid Migraine attacks. We need to stop making these attacks so explosive and disruptive!

I will take this as my opportunity to explain to my facebook friends and family that we can’t control Migraine disease despite all of the precautions we can take – don’t get hungry, wear good sunglasses, wear my hats, stay hydrated, etc.  Migraine attacks can still occur in a beautiful location while surrounded by loving family members.

This is another reason we need more research into Migraine disease which could result in better treatment for all of us. We still need more signatures for the Alliance for Headache Disorders Advocacy's petition urging Congress to hold hearings on the impact of Migraine and other headache disorders.

"Conviction is worthless unless it is converted into conduct." ~Thomas Carlyle

If you’ve already signed the petition, please spread the word. Congress must better understand us and how many of us, our families and friends are willing to stand up for ourselves before we will see any type of increased federal funding. We need to help us.

I don’t totally regret going on my trip as I still participated in as many activities as I could and I hope I wasn’t as big of a lump as I felt like I was for mom, aunt and sister. I do wish it could have been better – like no monsters should have come along…

How did you feel when travelling and vacationing when you got hit with a Migraine attack? Did you feel like maybe you shouldn’t have gone on your trip?  How did you cope?

Can’t Wait to be Cured!

As I was doing some of my research on biofeedback, I talked to one of the prospects who does biofeedback for Migraine patients. He made the comment that he loves when Migraine patients call him. That took me by surprise so I told him I hear of people running away from Migraineurs as they don’t know how to treat us or get frustrated by their lack of results. He became excited again and explained that he has great success with many Migraine patients and even cures some!

Alright, alright, I know there is no cure for Migraines. It is a genetic neurological disease for which there is no cure for yet which is why we need more research. By the way, have you and everyone you know signed the petition to urge Congressional hearings on the impact of Migraine and headache disorders yet? We only need about 20,000 more signatures! Please sign and help spread the word.

I know I need to give biofeedback a fair shot for different reasons. Although I’m apt to say I need to try it because my Migraine specialist ordered it for me, the truth also is, like I was telling my sister the other week, is that I don’t know how to relax. I know I have an outward appearance of being relaxed, but I feel like I’m always on the alert. Besides if it could possibly help me control some of my Migraines, then it is worth the try. However, I do have an alternate motive too. I have planned my first real vacation in a very long time and I want to be able to relax during this busy vacation where I am going to want to do everything. 

I enjoy watching other people even if they are in the process of observing others themselves. As I started my first biofeedback appointment, it was funny to watch Mr BFB (Biofeedback) while actually viewing me. I sat in the chair and naturally crossed my legs. By his reaction, I knew I shouldn’t do that, but it was also exactly what he wanted me to do. I played along and besides, I wanted to cross my legs so I kept them that way. I figured I would let him teach me my lesson when he was ready. 

I had some paper and a pen with me so I could write everything down to review again later. He said when people get tense, their hands and feet will get cold. He asked how I could warm my hands if I couldn’t rub them together or sit on them. I had to find another way. 

He wants me to purchase a stress thermometer so I can practice hand warming every day at home. He proceeded to strap his stress thermometer onto my finger. After about 30 seconds, we got a baseline hand temperature for me. 

Mr BFB said if the base hand temperature is 90^o F or above, that we would need to warm our hands by 2^o. If it is below 90^o F, then we need to raise our hand temperature by 5^o. He mentioned that some master type people, who typically meditate or do yoga, can actually get their temperatures up to 97^oor even 98^o. 

He let me know it could take some practice to warm our hands by the 5^o in the beginning, but we would get there even if it didn’t happen during this first session. I honestly wasn’t very concerned as he kept talking and my hand temperature kept plummeting. 

When I do my daily hand warming, he wants me to keep track of the time, the baseline temperature, incremental temperatures and any other significant notes. These notes can be if I’m listening to a CD at the time of the hand warming, if I’m experiencing a Migraine at the time, the beginning Migraine level, the ending Migraine level, if it is a particularly stressful day and just anything notable.  As all of this was going on, my temperature kept going down more.

He tried some type of stimulator on my brain since, of course, I had a Migraine going on. This stimulator has two stick like devices that are held on opposite sides of your head so that the sticks are in a straight line as if they went through your head.  It is moved around your head in this same fashion for short durations of time.  Do you think this is a bit freaky as I do, that he tried this stimulator on himself to show me how it was done and displayed great pleasure? 

Anyway, this stimulator was weird and cool at the same time. It would shoot electrical like currents through your brain. I could see flashes and hear crackling noises while feeling little jolts. I was just trying to visualize it hitting the Migraine. He said these currents are supposed to retrain the neurotransmitters. Ok. By the end, my Migraine was knocked down one level. I think he was disappointed that it wasn’t gone.

Mr BFB told me he loves when his patients come in with full blown Migraines so this machine will zap away their Migraines. Sometimes they will even go down to a zero. I am really trying to keep an open mind with everything and still need to understand all of this. Even if I can learn little things to help, it should be worth it, right? I think so. 

A lot of people with Migraines have pain that starts in their necks. As far as I know, mine never start there. As soon as he used these stimulators on my neck area, the whole stimulator thing stopped working even after he switched it to a higher level. He thought it was weird that the higher setting did nothing for me after that either.

Next we went back to the hand warming. Guess what the first thing he mentioned to me to do was? Of course uncrossing my legs! Then he told me about sitting up straight, making sure my hands were below my heart, that my hands were comfortable, in the same position each time I warm my hands and that my shoulders are not tensed up. As soon as all of that was done, my hand temperature started going up. He made other adjustments and the temp went up further.

Mr BFB did more talking. He was chatting about sympathetic and parasympathetic parts of the nervous system and how we want to use the parasympathetic part more. When I looked it up after, the sympathetic part is “fight or flight” while parasympathetic is “relaxation or slowness”. So yes, parasympathetic makes a lot of sense when you’re trying to relax. 

Once the pain starts, the sympathetic system goes into overload. Supposedly, biofeedback can lower your heart rate, decrease muscle tension and help you gain control over pain. Success in biofeedback sessions is measured by changes in intensity levels, volume, or speed of signals from machines they use, when thoughts and actions result in the action in the change of involuntary responses (like hand temp or heart rate).

Since my hand temperature kept going up, he made a joke that maybe he should tape his voice for me to listen to when warming my hands on my own. After I giggled, I said that maybe writing with the wrong hand helps too. That immediately threw him off where he apologized and said he should have strapped the thermometer to my other hand, but because of the way I picked up my pen and paper with the ‘wrong’ hand he assumed I was the other handedness. I didn’t look, but I’m sure that would have increased my temp even further. We couldn’t switch hands at that point; it would have thrown off this whole experiment.

Next, we went over stomach breathing. This is where if you put your hand on your stomach, you should be able to watch your hand go up and down while your chest, and definitely your shoulders should not move at all. This is how babies naturally breathe and only learn to breathe the wrong way as they get older by watching and imitating us stressful adults. As I did my stomach breathing, my hand temperature kept going up.

All in all, my temperature went up over the 5^o from my baseline mark which would have been significantly higher than the lowest recorded temperature during the session. 

As Mr BFB was wrapping everything up, he reminded me that he wants me to practice warming my hands every day. I had to ask if this ‘hand warming’ was just the teaching of my body to relax which is where the blood flow would end up going down to the tips of my fingers and toes where in the end, would warm them up. I think he liked that correlation. 

This was my first experience, my first session and my observations around biofeedback. I don’t know if biofeedback will help reduce my Migraines or decrease their intensity, but I do know that I need to learn to relax and get some of my stress/tension levels under better control. If biofeedback will help me do some of that, then it can be considered somewhat of a success. Next session will be skin conductance.

Have you tried biofeedback? Did it work for you? Did it help reduce the number of Migraines you experiences? Your intensity levels? Did it help you relax? How long ago did you try it? Do you still find it useful today?

Little Efforts can go a Long Way - Please Help

The little things we do can go a long way.  We do not have to expend a lot of effort or energy to sign the petition or to get others to sign the petition urging congressional hearings to be held on the impact of headache disorders.

The AHDA has done the hard work for us! When you or someone you know signs the on-line petition, all that needs to be filled out is your First Name, Last Name, Email, Zip Code and then click Sign the Petition: 

That's it! The comments are optional - you can enter them only if you choose to make a comment. 

Some of the comments made by those with Migraines and headaches who have already signed the petition can be found on Putting our Heads Together. 

After you sign the petition, it's so easy to hand out flyers to others to help to get more signatures for the petition. Here is brief glimpse at what the flyer looks like:

If you click on the picture of the flyer, it will bring you to a full sized copy of the letter that you can print and hand out to others! 

I've approached some people at work who were more than willing to sign the petition after I mentioned it to them. They even wanted to pass the flyer along to others after hearing about the petition drive. To make it easier, I emailed them the flyer along with a link to sign the petition so they could simply pass it on to others. To my amazement, it has already gone to many other states beyond my simple reach.

Please help keep the ball rolling. After you sign the petition, please help spread the word.  Don't be afraid to ask others if they are interested in helping with this very worthy cause. I even had someone who has always refused to sign petitions who ended up helping us out.

It takes only a minute. The AHDA will deliver the signed petition directly to Congress, but we need enough signatures to do that. Together, we can make a difference and we can ensure that our lawmakers in Washington appreciate the urgent need to reduce the enormous burden of headache disorders. Thank you for your help.

 

Please sign today and pass it along.

Family Follow Up

After I sent out emails to family and friends about signing the on-line petition, it was real interesting to see who signed the petition right away, who procrastinated and who never did anything. I don’t really ask for much for myself from them as I will do what I need to do, but I fight more for my nieces, nephews and others who struggle and are trying to find their way through Migraineland.

I sent my emails out to some core family/friends and then forwarded that on to my sons and niece who are now old enough to vote, two of which are Migraineurs, while explaining a little bit more about what the petition is all about. By Thanksgiving, I only had one person, one of the younger members of the family, who had signed the petition.

This gave me a lot to talk about during Thanksgiving, but it was trickier to do because there were unique triggers in the different rooms, but at least the lights weren’t too bad this year. The funny part was that I ended up, don’t laugh, sitting in one of the chairs in the nice dark quiet hallway which actually brought people to me and led perfectly into the conversation.

Most people recalled getting the email, had wanted to act upon it and vowed to do something when they got back home. One brother signed it right then and went on to do something I hadn’t done to that point even though I should have known better - I am just not good at taking the subtle (or even not so subtle) hints lately. He posted it to his Facebook. I followed his example after I got home.

It feels so rewarding to help others sign up for something like this especially since they are affected by Migraine disease too – whether directly, through a child, parent, sibling, friend, any of those combinations or any other way. They do want to help, but we must help get the word out so those that want to help know how they can help. It was also fulfilling to see other friends sign the petition from the Facebook posts.

I know everyone didn’t sign (yet), but there were people who NEVER sign anything who went out there and even put in comments on the petition. To date, two thirds of the ‘kids’ I sent the email to signed the petition and the one who didn’t, is in basic training so I’ll give her a pass. In addition to signatories that came from the Facebook posts, I have had a little over a seventy percent response - so far.

It always upsets me when I see another ‘Migraine Specialist’ give up on a patient because they’ve tried every medication or when a Migraineur is labeled as a Drug Seeker because doctors don’t know enough about Migraines and think we would rather be treated with narcotics than abort our Migraine.

We need more education, which means more funding, around Migraines. We need Congressional hearings to be held before the Primary Health and Aging Subcommittee of the Senate HELP Committee and/or before the Health Subcommittee of the House Energy & Commerce Committee – prior to the close of the 112th Congress.

It’s not too late to sign the petition or add it to your Facebook if you haven’t done so yet. It’s not too late to help spread the word. We Migraineurs definitely need your help with this too.

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Help Us Help Us - AHDA Action Alert

HELP END THE FEDERAL NEGLECT OF CHRONIC DISABLING HEADACHE DISORDERS!

The Alliance for Headache Disorder Advocacy (AHDA) sent out the following email alert:

Subject: Urge US Congressional Hearings on Migraine and Headache Disorders

Migraine and other chronic headache disorders cause tremendous suffering, disability, and economic costs in the US. Federal research funding agencies, such as the NIH, have neglected this burden partly because Members of Congress, with oversight of these agencies, are unaware of the huge scope of the problem.

A US congressional hearing has never been devoted to headache disorders. We seek to remedy this and educate your Members of Congress. But we need your help.

Right now, we ask you to please sign an on-line petition urging congressional hearings to be held on the impact of headache disorders. It takes only a minute to sign and we will deliver the signed petition to Congress.

Also, please forward this email to everyone and anyone that cares about someone suffering with a disabling headache disorder. Please ask them to sign too, and then pass the email further onwards.

Together, we can ensure that our lawmakers in Washington, DC appreciate the urgent need to reduce the huge burden of migraine and headache disorders.

Thank you very much, and happy Thanksgiving.

The Alliance for Headache Disorders Advocacy





I'm back:

We need to help ourselves. It's so easy to click on this link to sign the petition. We need to start standing up for ourselves.

After you click on this link, you will be brought to the AHDA website where you can click on a Take Action button. From there you will be able to see several of the headache disorder statistics which highlights many facts regarding headache disorders. You will be able to sign the petition at the bottom of this page.

It will take less than two minutes of your time to sign the petition. If you want, you don't have to, you can even add a public comment to go along with your signature.

After I signed the petition, I decided to follow up on an email I sent a while back to some of those close to me about signing up to receive these action alerts. In the email I sent today, I wanted to encourage them to sign this petition. If they received the action alert, that's great! My email should only server as a reminder to sign the petition. If they didn't receive the action alert email, then that's great too. At least they would have received my email to sign the petition. The good thing is that I will be able to follow up with everyone again in a couple of days when we get together for Thanksgiving.

Please help us to help us by signing the petition. We really need to start taking action for ourselves and this is an easy way for us, our family and our friends to help us out.

Thank you!

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More than a Headache

I'm laying here next to my mom; almost feeling guilty for last night. After a long car drive, my parents were relaxing and watching the news. They had just seen a news broadcast on Congresswoman Michele Bachmann and her run for the presidential office in 2012. My parents were commenting back and forth on different things while I was trying to catch up on some of my reading.

Shortly after their conversation, I came across Diana Lee's post In defense of Michele Bachmann, Migraineur, Congresswoman, Presidential Candidate. Since I'm always trying to bring awareness to the Migraine cause and since they were just talking about her, I mentioned that she was also a Migraineur and that this was being brought out in the campaign as a way of showing how she was unfit for the office. They called it a 'stress related condition' and since she controls her Migraines with medication, the smear campaign said she has 'heavy pill use'. Are we going back to the days when presidents have to hide their wheelchairs?

Anyway, going off track as I normally do while talking to my parents, I went on to say typical stuff people will say like 'it's all in your head'. My mother laughed and said 'if you think about it, it is all in your head'. Of course I couldn't let that fly. I know I kind of started it, but I can't let that go by as a joke especially by someone who not only had Migraines in the past (even if she didn't know they were Migraines), but has grandchildren, nieces, great-nieces and many more relatives with Migraine disease. Besides, what kind of an advocate for Migraine rights would I be if I pretended to laugh along.

I immediately said I didn't think it was funny. She tried backtracking a little, but with it being late and after the long drive, I was probably a little too relentless. I mentioned all of her direct descendants with Migraine disease, how hard it is for us to get people or doctors to believe us that our Migraines are not all in our heads not to mention how much money we spend for our Migraines. I asked about some of the other symptoms that are not 'in our heads'. As I said, I was not very kind to mom and probably feel a little guilty this morning.

I think I am tired of being discounted and fighting for everything I have and will still need around Migraines. I am tired of not being believed. I am tired of having to push doctors toward better treatment. I don't want this for my son, my nieces, my other relatives, my internet friends or anyone else. This Congresswoman shouldn't be discounted because she has Migraines. Should all of these other famous Migraineurs have been discounted too? This extensive list even includes President John F Kennedy as a possible Migraineur.

I will follow up with mom today and talk to her more about Migraine disease and how the headache is only one phase of a Migraine attack. I know she thought she was being funny, but this is very serious business to me. I think she did get that point last night, but I can't let this opportunity pass by to soften up last night a little and educate a little more. Urg...

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Military Migraine

We are having an everything party mixed into one for my oldest niece tomorrow. She will be going away for six months and wanted a big shindig for everything she will be missing during this time including our family reunion, her 21st birthday, Halloween, Thanksgiving and Christmas. I'm sure it will be a lot of fun where we will even throw in the 4th of July since this is the date of her party. I know there will be fireworks anyway!

Yes, we will have a big BBQ, turkey with all of the fixings, a Christmas tree, a birthday cake and all sorts of presents for her. She is joining the National Guard and will be in training for these six months.

I am proud of her, but also get a little worried about her because she has been diagnosed with Migraines since she was in kindergarten. She seems to know some of the things she needs to avoid so she does not get as many Migraine attacks which is very important. She has never been on any type of preventative.

Does anyone have any helpful hints for someone in the military for when they get a Migraine? I'd love to pass on anything I can to her to at least make that part of her experience easier for her.


As a follow up to Support for Migraine - Who's Responsible for the Disparity?, as soon as I sent my father the information on the AHDA automated alerts, he signed up to receive the alerts for himself. I have the full confidence that he will be an active participant from now on and will be sending out emails to his elected officials with our next alert especially since he has been actively involved with his representative and recently received approval for an American Legion request he submitted to them where he is now on a first name basis with his rep.

I will be talking to many other family members tomorrow so we'll see how successful I am with them and if they'll follow suit with my father. We are also scheduled to have our real family reunion in a couple of weeks. Last time, we had about 93 family members attend so tomorrow could be like a practice run for me for when we have this bigger family party.

We need to do what we can to be heard. The more people that speak out, the better it will be for us. Each email sent to an elected official represents about 100 people. We need to help ourselves and be heard.

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Support for Migraine - Who's Responsible for the Disparity?

I recently took a long driving trip with my parents where we were able to talk about many things including Migraines. I asked my father about the action alerts I have forwarded to him and quoted many of the statistics mentioned in the article I have reblogged below about the extremely low percentage of Migraineurs who received the alerts that actually acted upon it.

An action alert is basically a call to action, times when the Alliance for Headache Disorders Advocacy (AHDA) needs people to write to their Senators and members of the House, asking them to support requests that the AHDA advocates have made of them in person or other issues that have come up.

When these alerts go out, we really need to help ourselves or the people we care about by taking the 10 minutes or less it takes to respond to these alerts. It really is important that our politicians start hearing from their constituents so we can start getting the help we need for Migraines. You don't even need to know who represents you in the Senate or House or their email addresses. It's truly that easy.

Yes, my father did vaguely remember receiving that email from me and only now kept asking me to resend this information so he can take the proper action the next time an alert goes out. He not only has me as a Migraineur, but he has many grandchildren, nieces, great nieces and others that need help with this disease.

This interaction with my parents and other recent Migraine dealings really has me thinking that I need to take a different approach with my friends and family who always say they want to help. This is how I need their help the most as it will also help many of my friends and family who also have Migraine disease.

Do you receive these action alerts? Did you act upon the alert after you received it?

We need to help ourselves. One way I like to look at this is that I have received invaluable help from other Migraineurs and this is an easy way I can give so much back, to pay it forward, for what I have received from them. If you have not done so already, please signup to receive an AHDA alert and act upon it when you receive the alert.

Earlier this week, a new entry was posted on the blog of the Alliance for Headache Disorders Advocacay, Why the Disparity in Attention and Support for Migraine and Headache Disorders? Written by Bray Patrick-Lake, an AHDA board member and President and CEO of the PFO Research Foundation, this blog entry echoed some of what I've frequently thought.

via www.puttingourheadstogether.com

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Migraine Sweepstakes for Migraine Research

As the Alliance for Headache Disorders Advocacy is headed to Capitol Hill this week to talk with our Senators and members of the House about the need for better Migraine and headache treatment, we can have a little fun while raising money for Migraine research.

We all should know how desperately we need more funds for just the basic research into Migraine disease. The Migraine Research Foundation (MRF) is holding its second Door to the Cure Sweepstakes where the proceeds will go directly to their research program investigating the causes and better treatments for Migraine disease.

We must put fundraising and whatever we can do to help into our own hands to help ourselves and/or our loved ones! This sweepstakes gives us the perfect opportunity to donate toward Migraine research and have the chance to win some great prizes.

Win prizes and support Migraine research! How great does that sound? The prizes go for just $10 or $25 a chance. You can buy as many chances as you like and as many tickets for each prize that you would like to try to win.

Check out the MRF Sweepstakes page for all of the great prizes and to buy some tickets. The sweepstakes closes at 5pm Eastern Daylight Time on June 9, 2011.

Let’s hope that the sweepstakes and Headache on the Hill are both Win-Win events. Good luck!

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