<img alt="Hc_logo" src="http://www.healthcentral.com/common/images/home/hc_logo.png" />

3/ 9/11 9:42pm

I don't have ideas off the top of my head. But I wanted to say your post is lovely and so well written. Thank you for this one. Very inspiring.

Tonya

3/ 9/11 11:37pm

Nancy, I agree with Kelly and thank you for this piece. We need to talk about this topic openly and together find possible solutions that fit us a community. There has to be answers that eases the pain and suffering of each migraineur, while equipping each of us with the tools we need when darkness falls upon us.

3/10/11 7:06pm

Thanks, Kelly. Looking forward to your thoughts.

3/10/11 7:07pm

Thanks for reading Tonya. This is a huge problem. Working together we should be able to figure it out??

3/11/11 10:34pm

Nancy, I've thought about this a bit more. I am also frustrated with the disconnect I've experienced with so many physicians. I have even had a pharmacist argue with me a couple years ago that I could not be disabled by Migraines and I had to fight for my medications. He justified it by saying he did a "headache" rotation and so he knew. It was the first time I ever fought for myself and was empowered to do so by being here. I feel like the medical professionals training affects their perceptions of our treatment and how to treat us in some ways. I have a neuro-otologist who I see for my vertigo. While discussing whether I have Meniere's disease or Migraine Associated Vertigo, he went on his own soap box and said not all headache specialists are created equal. It was our first appointment and he didn't know that I seen a fabulous headache specialist. But, to have a young doc advocate for me as a patient! It was fabulous. I saw a particular headache specialist for 4 years, and I constantly felt like I was bringing in the ideas, and was hospitalized multiple times without hep. My last hosptialization (and the last time I ever saw him), I realized he had no clue what else to do with me. But, why didn't he come out and tell me that and recommend I see someone else...perhaps in his own practice of headache specialists? He knew I was suffering. I would ask him "are you as frustrated as I am?" I just needed him to be up front with me!

But the conversation here is what *we* as Migraineurs can do. I'm not someone that has big-picture ideas, though I'm willing to participate in them. But, my big small idea is this: I feel that Migraineurs have a personal responsibility to each other. It is our responsibility to reach out to each other and help each other be educated and learn coping skills...one person at a time. I think of how little I knew before I joined this community. And then people reached out to me and I learned and found so much help and comfort. And I need to reach out to the ones who are in the place I was in before I was educated. It is also my responsibility as a Migraineur to reach out to continually learn more coping skills myself...to seek out other's ideas. I have to be honest with myself and with others...when I'm struggling, when I'm at the end of my rope, so that I can have others help prop me up during those times. We have to be here for each other and commit to NOT isolating.

I realize my input is something already being done, but maybe it seems we need to be revitalized (rather revitalize each other) as I noticed that the forum participation is drastically down from when I used to participate. Last year I had fallen away from doing these things...reaching out to other Migraineurs. My bad. Really. My bad. I forgot how important it is for me AND for other Migraineurs to keep in touch no matter where I am on my journey. It is so rewarding to be blogging again, to be on forums again. To see how a simple message can change someone else's life and visa versa. They know they are not alone in their expeirence; I know I'm not alone in my experience.

So, that's my thought, for now.

Jamie

3/23/11 10:39pm

I personally have been pretty much "forced" to create a "dear doctor" letter when creating a relationship with a new provider. It helps them understand me, and if anything comes up later, I can say "you knew this about me when we met."

Easier than hearing what I did from my now former PCP- whom I had trusted.

My pdoc

Grautman

3/ 9/11 11:06pm

Migraine, and a lot of other not-well accepted diseases are because they're completely "invisible" and chronic, not life threatening...usually. It's difficult to prove something that cannot show up on any tests. And given that treatements need to be as individual as the sufferers, it's not like there's a litmus test cure-all drug.

That and the words "migraine" and "headache" have become interchangable for the most part when, in reality, one is a syndrome and the other 'just' a symptom. The two need to stop being used interchanably before real progress can be made.

3/10/11 7:10pm

Hi there,

Thanks for much for coming over and reading, "Gman." See that is exactly part of the problem; Migraine is a neurological genetic disease with headache being (or in some cases not being) just one of it's many symptoms. Headache disorders are just that; Chronic Daily Headache, Tension-Type Headache, Cluster Headache, Ice Pick Headache and on the list goes....

Leeloo

3/ 9/11 11:25pm

Hi Nancy,

On Monday morning I was on day 3 of a severe migraine, triggered by my menstrual period. I was finished with the period part, but not the hormonal fluctuations afterwards, which can lead to my most debilitating migraines. Using Frova over that week along with Excedrin can cause rebound, stretching the experience into a 2-week ordeal, even though I have found significant relief some months from my PFO closure.

I had to leave work that morning, and due to my manager's flippant attitude, had a breakdown. I didn't want to leave. I needed the money. But migraine was in control that day as I had already had too many medications and could not take another. I called my mom and told her I didn't want to do it anymore.

I was admitted into the psychiatric ward by my psychiatrist that afternoon.

While I do deal with depression on a daily basis, I had just also began a new medication switch when my Lexapro - which up until recently had performed wonders for me - seemed to fail. So I was put on Prozac, Wellbutrin, and Xanax as I tapered off of the Lexapro.

So many factors (my period, the med changes, the migraines, some personal financial difficulties) all culminated in my stay at the ward. I was immediately taken off of the Prozac.

However, during my stay my migraines, for whatever reason, the stress of being away from everything I knew- from my husband, my cats, my books, the people I work with on a daily basis - whatever it was perpetuated my migraine cycle as my stress and anxiety levels went through the roof.

The ward was not migraine-patient friendly. My psychiatrist and my social workers knew my burden was with chronic migraine and depression, and I did admit to being suicidal because of it. I'd even planned it out. Part of it was the new medication talking, and part of it was a sincere interest in just having a little peace from my head.

The lights were harsh in the ward. I was awakened every half-hour to hour to be talked to, have my vitals taken, or to take phone calls that I needed to take, always with an 8/20 migraine. Even though they allowed my lights to stay off, I was not allowed to close the door to my room, and several other patients, housekeeping, and nursing staff were constantly calling to one another, making noise, or there were announcements to group therapy or outside breaks. I could not get up to eat. I was not allowed my medication because my insurance refused to pay for my triptans, and I was not allowed narcotics. One Excedrin and a sedative is all I was allowed. A little past the 24 hour mark I knew I couldn't handle it anymore.

I asked the nurses if I could sign out. They could not treat me appropriately for my condition, because the migraine perpetuates the depression perpetuates the migraine, etc. I couldn't participate in groups. I had no interest in food because of the anxiety and nausea. I just wanted relief, and I kept being denied, even though I was given some pretty sympathetic looks and promises to "see what they could do." My social worker, bless her heart, even took the time to research migraine and came to the conclusion that I was struggling with a terrifying foe.

Thankfully my psychiatrist understood my predicament and he OK'd my leave. My husband was there for visiting anyway so as soon as the papers were taken care of I was out of there. On the way home I was sweating so profusely I thought I was going to vomit in the car. My migraine was a 10/10, but I'd been given a sedative before asking for discharge so I wasn't so interested in freaking out as I was getting back home to my own bed and quiet, dark home.

When I woke this morning, the migraine had broken on its own. I was clear-headed, though still slightly frightened of eating. My appetite, which I had lost after beginning Prozac 3 weeks ago, has now returned within 24 hours, however.

I was not angry at the ward because they did not know how to treat me while I was there, however it is apparent that chronic pain patients do need pain management while in such a predicament and it is up to the individual state to see that their workers are appropriately prepared for such a challenge. While I understand that to have a mental illness is not neccessarily to have chronic pain (though I know widespread pain DOES acoompany depression, etc. in some of the population), it is very common for chronic pain to trigger depression at the loss of quality of life we have to endure. I think the psychiatric community at large needs to see that pain and depression go hand and hand, and that while one may not be reflective of the other, they can perpetuate the cycles in an endless nightmare for some individuals. Those individuals are slipping through the cracks because their doctors do not have to proper tools at their disposal to care for them, even if they deperately want to.

The doctors and nursing staff on my ward were actuall great, however they knew less about how to handle my problem than I did, which is why I asked to be let go so that I could take care of myself in my home where there would be little to no overstimulation. They admitted as much that they did not know how to handle my treatment and were sympathetic to my issues.

I'd like to see pain management included as a therapy to those in need of it at a ward when they feel they cannot handle the pressures of their chronic painful diseases anymore. No one should be turned away, willingly or no, just because the staff is totally unprepared to deal with what they are given to help.

Leeloo

3/ 9/11 11:27pm

I'm sorry, that should read 8/10 migraine, not 8/20.

3/10/11 7:16pm

Hi there,

I knew that's what you meant! I am so sorry for your current struggles. Goodness, what an awful time you've had.

That's just the thing, while I'm not a fan of straight up "pain management" for Migraine per se, managing Migraine disease like any other disease needs to have many treatment components to it. It isn't an 'all or nothing,' 'take it or leave it' sort of thing between meds and other optionsthings that help us cope with this disease.

I'm all about ending someone's pain - emotional and physical. We just have to figure out a way as a group to do it.

3/11/11 10:47pm

Oh, I did not realize you had gone through such an ordeal! I'll be frank. As my life has felt like it has been in a tail spin this week (months has lead up to this), I have said to my husband, I feel like I might really crack mentally. But in the same breath, I told him, I can't crack, because if I get hosptialized in a behavioral health place, I am concerned that being hospitalized would be worse because I would lose the control of environment ect in being able to manage my illnesses. So complicated! My heart goes out to you. Thank you for sharing your story. It is real, raw and honest to what goes on with many of us. Here for you, girl.

MIssDeb

3/10/11 1:20am

Your post was wonderful by the way I agree that migraine carries a hugh stigma mostly due to lack of education and that fact that it is an "invisible" disease. Most doctors don't understand migraine and neither do those who suffer from them. I myself referred to them as my "sick headaches" until 6 short years ago when I learned it has an actually name. I didn't know anything about Migraine and am constantly learning about a disease I have suffered from for over 20 years.

I think one thing would could possibly do is start a letter writing campaign to some of the celebrities and famous individuals who have come out about their migraines and enlist their help. We also need to write to the medical communities and share our stories. These forums and places like this are wonderful and full of lots of good info but the audience is quite limited.

I blame the medical community and the insurance companies in large part for the stigma because I can't tell you how many times a doctor has told me "it's only stress", here is an antidepressant, or take some xanax. If you do find a doctor who has a clue and prescibes drugs that actually help, the insurance denies or regulates how many doses you can have because of costs. They don't know the disease, don't understand it and most don't want to take the time to find out about it and treat their patients appropriately. They just assume most migraineurs are looking for drugs and our pain and suffering isn't real. That's a sentiment I hear throughout these threads.

We have to educate the doctors firstly, the lawmakers and most importantly ourselves and like someone else mentioned, stop using the word "headache". I know polls aren't allowed on this site, but I'll bet if you asked, my quess is that almost everyone who has posted here has been suicidal at one point or another because of this disease. Many of us would not carry out that thought, but some will and some have already. My heart goes out to all of us as we fight daily for some kind of a quality in our life.

We could write to Dr. Oz who is very well respected and is very good at explaining all things medical to the masses. He also appears to be a very compassionate man. We could write to Cindy McCain who has already spoken to congress/senate on Migraines and the issues surrounding migraines. These are just a few well known people and there has to be hundreds more we could enlist. We also need people/doctors in particular who are true and honest and accurate representatives of the disease.

For instance the Neurologist that was interviewed after Serene Branson's episode said "Migraine is easily treatable". Those were not the exact words but that's was he was saying. It was as if he was saying you just simply pop an aspirin and problem solved. How many of us could dispute "easily treatable"!!. Comments like that, in my opinion add to the stigma and are total untrue. Just a thought...

3/10/11 7:22pm

Thanks for reading and your feedback. Speaking of letter writing campaigns, the last Action Alert the Alliance for Headache Disorders Advocacy put out was so poorly supponsored my Migraineurs (that means us)t why would anyone want to support us as a group? I don't understand the lack of effort we as a group give when it comes time to do something like the simple action alert? Are we too sick and tired? MS sufferers seem to get things moving, Lupus patients get it done, but not Migraineurs. Why is that?

NIH or anyone else isn't going to fund Migraine and headache disorders until we make noise. And that takes people, some sick, some tired, some just sick and tired....

Leeloo

3/11/11 6:52pm

I think things are just beginning to come together for migraineurs as a whole. I mean we, as a group, are slowly spreading the word and actions are being taken.

I did not get the last action alert until it was too late. If something such as a text had been sent to my phone, I probably would have gotten it much sooner. I felt very bad indeed that I did not have a chance to sign it. I do not know how long the alerts remain up for, perhaps an extended time period could be considered? Some new options for alerting people such as snail mail as well? I know they have my address and the addresses of family members who have signed previous alerts. Phone calls reminding people to take action for those who OK it?

That being said, so many individuals don't take migraine seriously, including those who suffer from them. I know many people who meet the diagnostic criteria for migraine and they know it, but it does not affect their lives like it does the chronic migraineur. They have not been dignosed because it does not affect them daily. They are so removed from their once in a while pain that they can afford to ignore the larger community in need. They can shrug off one or two migraines a month and still function as a whole. Therein lies the problem with migraine - some people literally "don't get it" even if they do. And they don't take it seriously, whether they know what is happening or not. I've reached out to many people who just shrug and go on about their business after a small chat about what migraine really is. They may care when it is occuring to them, but when it's over, it's over until the next one, which is likely weeks away.

I don't know. It's just been my experience since I began educating myself in 2006. People still balk at migraines being anything more than a severe headache. The last person told me to "drink 8 glasses of water a day because that's what they say cures migraine". HA! I drink a LOT of water, beyond 8 glasses a day, and if only it were so easy.

Diana Lee

3/11/11 7:50pm

I'm so dissapointed to hear the response to the last action alert was bad. I mean, I'm just one person and I busted my butt and downright harrassed people to spread the word. I wish I knew what else to do to get attention for our needs.

3/11/11 10:39pm

Wow - you articulated this so well, it's like you're reading my mind. I'm one of the guilty migraineurs who have consciously wanted to ignore this condition hoping it would just go away. Unrealistic, irrational and completely stupid, but real. I've had migraines for over 15 years and have been chronic for the last few years, but beyond going to the doctor and getting the prescriptions filled I haven't really discussed it with anyone. Not my friends and barely even family. People who have never had a migraine simply don't understand. How often can you really tell people you have a severe headache and expect them to believe you? Instead of being a downer all the time and sounding like a broken record, I just medicate and put on a brave face and deal with it the best I can. I'm not trying to sound like a martyr, I just haven't wanted to let it be real because I didn't want it to have that much control over me. The truth is migraines have controlled my life for as long as I can remember.

But now a couple of things have changed. First, I have two small boys, 4 1/2 and 19 months. I still want to ignore this, pretend it's not a disease and that there's no chance that I've passed this on to either one of my beautiful boys. But now I guess the smarter thing to do would be to stop living in denial, climb out of my own little world of self pity, and try to do something positive that might help them (and others) in the future. The other thing relates to another post I've left regarding a waiting room encounter I had recently with a 16 year old girl and the fact that I'm sure there are many others like her that need our help as well. (I didn't articulate that post as well as I could have, I was just so moved after hearing her story I wanted to share it.) I don't know how to help or where to start, and for whatever reason I wouldn't do anything just to help myself before, but now that I have some very special motivation I'm really going to try.

3/11/11 11:11pm

I wanted to say about the last, AHDA action alert, I got the email the evening of, Friday, February 18th, that day they were going to the hill. I thought I had found out too late and was too late, but I still posted it on my blog, still posted it on my facebook, still signed it (wrote a personal note) and had my husband sign it (write a personal note). But, I thought I was too late. I wonder if the lack of response was because others also thought they were too late?

I do wonder why other groups seem to be more motivated than we are...more mobilized. As Leeloo and Janet expressed, it seems that motivation is the key. But I am confused here, because I don't understand lack of motivation. My life was compeltely changed...completely taken over by disabling Migraines. I am motivated. So, what is keeping others from being motivated? As Leeloo says, maybe their lives are not as affected as those of us who do suffer chronically. I appreciate your honesty, Janet, in that you said were in a denial of sorts. But, is everyone truly in denial? Maybe. Is it that people feel too sick, too much in pain to do anything...even a simple action alert?! How do we motivate people when they are not self-motivated...perhaps are too depressed...too isolated...in too much pain...too distracted by life's other difficulties...too focused inward to be motivated?

Or is our approach not working? Is it that they see these "action alerts" so many times that they don't "see" them anymore, like a picture on your wall that has been there so often you don't notice it anymore? Is it something where people don't think it is making a difference? I was so encouraged by Teri's post (I can't remember when it was.) where she shared how our responses to the action alerts *had* made a difference. I didn't push that word to get out...to remind people that their actions *are* making a difference. Maybe I should have so that people would understand how important it is to continue contacting our congressmen?

I hope I'm not coming across as blaming...I honestly am just trying to brainstorm...to consider what might help change things. I hope this comes across in this way.

As I mentioned before, Nancy, I am very inspired by your post...and very motivated. I'm so glad you have brought this conversation up. I'm glad we're having conversation. It is our responsibility to make a change. Thanks for reminding us of this point.

3/11/11 11:17pm

Sorry for so many comments, but I wanted to ammend what I said earlier in that I am motivated *now*, but I was guilty last year when I had improvement in my Migraines in that I left the community for a while...blogging, foruming ect. I did not want to be reminded of what had chained me for years. I feel very ashamed for leaving my fellow Migraineurs behind. I am sorry for it and have a lot of guilt about it actually. I always said I wouldn't forget what it was like, and I didn't forget, which is why I wanted to get away from it. In the future, when my Migraines are better managed again, I have now learned how important it is not to leave. Thanks for your patience in my many comments. You've really gotten me thinking.

Diana Lee

3/11/11 11:28pm

I think you actually hit on a big key without meaning to. When people get better they get busy with other things like just basically living their lives and forget about migraine disease as a cause. Those of us who are living it day to day are often so limited by our circumstances that we aren't as effective as we could otherwise be.

I think we have the building blocks in place, but what to do with them is something I'm just not sure about. I have a lot to give, but I'm not sure how my talents would be best used. All of us talking about it is a great start, though.

Teri Robert, Health Guide

3/12/11 2:28pm

But how do we get people interested in a campaign? Nancy mentioned the last Alliance for Headache Disorders Action Alert. In these Action Alerts, we generally ask people to send an email to their Senators or Members of the House of Representatives. We use a service that lets us have a pre-written letter that people can add their personal comments to, then when they add their name and address, the system automatically send it to the right Senators and Representatives, so nobody has to look them up or anything like that. The entire process can be done in a matter of minutes. When we have these alerts, I'm usually able to notify our members here through our email newsletter. Between the newsletter here and the other ways of notifying people, at least 30,000 people get email notications. We're lucky if 2% of the people we notify will take a few minutes to send an email.

One of the things the Alliance for Headache Disorders Advocacy has been working on is getting NIH funding increased for Migraine research. Last May, I was invited to attend a meeting with NIH officials, researchers, and representatives of nonprofit organizations dedicated to Migraine and headache research. It really put me on the spot when someone from the NIH raised the point that Migraineurs themselves aren't raising any $$ for research like the patients who have many other diseases are. When asked why Migraine patients aren't banding together to do something, I had no answer.

Sure, the idea of a celebrity spokesperson has come up over and over again, and it may be a good idea. On the other hand, we don't seem to be able to get a group of "regular" patients to email Congress or donate to organizations raising research funding. I'm not talking huge donations either. There are more than 37 million Migraineurs in the U.S. Think what we could achieve if we could raise the dequivalent of even one dollar per Migraineur.

The problem is that I simply don't know what to do to bring us all together and get people to be proactive. It breaks my heart to see people taking their lives, living in pain every day, losing their jobs and marriages. But, what do we do?

Teri

Teri Robert, Health Guide

3/12/11 2:44pm

Leeloo,

Sorry you didn't get the alert sooner. We sent it out as soon as we knew. As for texting or other ways of alerting, the system we use to make it so easy to send emails is very expensive. We push hard as it is to raise the money to cover that expense every year. We simply do not have the funing to offer other methods of notification, so we have to depend on email.

Teri

3/12/11 3:12pm

Hi Janet,

Denial is a very strong emotion. It can carry us through many, many things, like disease, death and dying. Some people never come out of denial. Others dig their way to the top, take a breath and hide again. Then people like us, dig, and dig and dig, our way out of the mud, and find a way to deal with the hand we are dealt. I'm not saying one is better than another, but if we want things to improve for Migraineurs and the disease itself, we all need to bench the denial and move on.

And I think you are right - people are always saying, oh "my sinus headache is back," or "I don't have Migraines because I don't need to sleep in a dark room" and the denial continues.

Wake up and smell the coffee. 37 million of us have Migraine. It ain't just your sinuses!!

3/12/11 3:20pm

Your comments are always welcome - more is better!! You have great point.

People do leave communities like this when they feel better. Good for them. I wish when they left, they (maybe they do) continue to "educate" people about Migraine disease.

As far as being too late with the action alerts, I figure the site will tell me if I am too late, so I always give it a go!

Blaming, no way!! I think we can all agree it really doesn't matter where the stigma started, just that it needs to end.

I know I keep going back to MS and MG groups, but really, why are they more motivated then we are? Because everyone can SEE their disease. MS folks may walk, talk differently. People with MG have weakened muscles and may have altered gaits and a droopy eyelid - you can SEE it. Cancer patients don't have hair, and on the list goes. What do we need for people to believe our disease is real? A tatoo with Migraine across our forehead??

3/12/11 5:29pm

Teri, I know you've been dedicated to this for a long time and I can only imagine your frustration. I honestly think for many of us it's not knowing what to do, where to start or how to contribute. I know someone else mentioned having a lot to offer and I feel that way too, I just have no idea what to do or where to start. Should the first step be our own foundation for migraine research? Should we focus on writing our elected officials? I'm showing a lot of ignorance here and I'd have a lot to learn, things like who do we write to? Is that even the best place to start? Or is it really a bunch of fund-raising we need - are there even people dedicated to our cause to do the research? I have no idea. It's hard to feel like I can even begin to make a difference with all these questions, but it seems somewhere in all these questions there must be a logical place to start.

Teri Robert, Health Guide

3/12/11 10:41pm

Hi, Janet,

No, I think the last thing we need to do is start another foundation. I really think we'd be better off to support those that already exist. In alphabetical order, there are three nonprofit organizations out there funding Migraine and headache research:

      • The American Migraine Foundation
      • The Migraine Research Foundation
      • The National Headache Foundation

As for writing elected officials, that tends to do more good when there's something specific for us to ask them to do -- voting for or against a particular piece of legislation, supporting report language in appropriations bills, and so on. The Alliance for Headache Disorders Advocacy was started in 2007 to address advocacy issues related to Migraine and other headache disorders. The first issue we tackeld was the research funding issue. Most of our Action Alerts, which are emails sent to AHDA supporters asking them to send emails to Congress, have been about the research funding issue, but there have been some other issues. The most recent one was asking members to email their Members of the House about HR1, which drastically cut funding to the NIH. You can follow the link to that site and sign up for their mailing list. You'll only receive email from that list when an email needs to be sent to Congress.

You can also click on the "Free Newslettter" link in the navigation bar on each page on this site to subscribe to the MyMigraineConnection newsletter. We try to keep you informed when there are important issues to be addressed or fundraising campaigns underway.

Keeping your eyes on Nancy's and my SharePosts her as well as our personal blogs is another good way to keep up with what's going on in the Migraine and headache community. We both try to stay on top of things and share that information in every way possible. My Facebook page is also always full of links and information.

And, Janet, it's not just the need for fundraising and sending email and the need for better coping skills and support that we want to share. There are positive things that we want to share too. We want people to know that they don't have to just live with chronic Migraines and headaches. Too many people don't know that there are true Migraine and headache specialists out there who limit there practice to Migraine and other headache disorders and really ARE helping people get their lives back. Every time a doctor says there's nothing left to try, they're quite probably wrong because it takes three months to give a preventive treatment a fair trial, and there are some many of them available today that it would take a full 25 YEARS of trying a new one every three months to have tried them all.

OK. Guess it's time for me to wrap this up now.

Have a good night,

Teri

Diana Lee

3/13/11 1:17am

I think something that might help would be for some of us to talk to people in organizations that have better patient support and find out what the keys are to getting that support. What do we need to do to be more visible? How are they getting the money together to do more active campaigns than we're able to right now? And so on.

I guess I could get that ball rolling by asking around about which organizations have the most loyal following.

I also think it would help a lot of organizations like the NHF made a space for headache & migraine patients to have a voice in their message and activities. Right now it doesn't much feel like it's FOR us.

Teri Robert, Health Guide

3/13/11 10:27am

I'm not sure the last action alert is a good example, Diana, because we didn't have a lot of notice on it. We really only had a few days, and not everyone is able to check email every day.

On the other hand, there were only about half as many email sent in response to it as were sent to previous action alerts where we had more time. Fewer than 1% of the people I PERSONALLY emailed responded. And that's what I don't understand. The people I emailed are the same people who frequent web sites like this looking for help with their Migraines. These are the people I'd think would take the five minutes to email their Senators and members of the House on issues such as how desperately we need research funding because with out it, we're not going to get more effective treatments.

One year, around Mother's Day, the NHF tried to get people to donate $1, thinking that by asking for such a small amount, they could find a million people to donate and raise research dollars. It didn't work.

So, how can we get people interested enough to get involved? I don't know.

Teri

3/13/11 4:58pm

Thanks, Teri - that's great information. You make a really good point about making sure people know that there are specialists out there for us. I just wish there were more of them. Because of you and your book, as well as your posts, I realized I needed to pursue other treatment and was able to go to the Jefferson Headache Center. I had been with my neurologist for many years and while we had a good relationship and I respected her, my condition was deteriorating and we just weren't getting anywhere. She wasn't happy that I left but at some point I decided it needed to be all about me!

I don't know if others have had the same experience, but I wish someone had told me, or I had thought to ask, about all the different preventative drug options there are. Each time I've tried a new drug (new to me) that didn't work, I've been discouraged and felt pretty hopeless - until I started going to Jefferson, where their entire approach is, 'we're going to keep trying until we find something that works for you' - which did a lot for my morale.

Not everyone can get to a headache specialist or even a really good neurologist. This might be way out there and completely over-simplifying, but I wish there was a list we all could have so we could challenge our docs a bit, by being better prepared for different options to try. I'm not trying to say it's all about the drugs, but if we start asking more questions maybe they'll have to get better at treating us?

Teri Robert, Health Guide

3/13/11 6:08pm

Janet,

You're welcome.

One of the changing moments of my life was Dr. Young at the Jefferson saying, "I won't give up on you if you won't give up on me." The doctor that you had before you left SHOULD have been happy that you left. Sure, she could have been sorry to lose you, but she should have been happy that you moved on to try to find someone better equipped to help you. Shoot! She should have referred you out at some point. Maybe patients don't know that there are real Migraine specialists out there, but surely doctors do. Don't they?

We do keep a list of possible preventive medications here on the site. Did you know that? You can find it in Migraine preventive medications - too many options to give up! This is an article that's updated regularly.

Some doctors would be helped by that list. Some wouldn't want to look at it. Some wouldn't know how to prescribe some of the medications on it. But, it's there for the information. Is this what you meant?

Teri

3/13/11 11:17pm

Oh my goodness, I had no idea about the list, that's wonderful. I'm so happy to know about it now, what an amazing resource. Thanks for including the link.

What's unfortunate about my former neurologist is that she even said she knew the Dr. I'd be seeing and she told me told me that she knew as much as he did. She also gave me an incredibly hard time about the referral, despite several weeks notice. I was really close to canceling the appointment out of some misplaced loyalty. I share all of this only so that others know that it really is worth sticking to your guns. It doesn't sound like much, but it was an uncharacteristically assertive thing for me to do and I'm so glad I did.

I still wish there was more I could actually do to help but I'll keep watching closely for all the opportunities that come along. Thanks again to both you and Nancy for everything you do!

Teri Robert, Health Guide

3/13/11 11:33pm

You're very welcome, Janet!

I'm sorry your former doctor gave you such a tough time. I truly don't understand that. I'd think that doctors especially would understand that those who treat only Migraine and other headache disorders have more experience and usually get more continuing education, and that usually translates to being better equipped to help us. Guess some of them take it personally even though they shouldn't.

Here's the way I see it. The person with the most at stake gets to be in charge, and that's us, not the doctors. We're the ones whose health and quality of life are at stake.

Stay tuned. There are plenty of opportunities to "help." From writing to Congress, to donating a couple of dollars here and there, to lending support and sharing information with others. Every bit of it adds up.

Night!

Teri

grieving mom

3/11/11 2:52am

You have given all who frequent this site a great deal to think about. The DISCONNECT is INDEED, the fact that migraine disease never goes away; and --THE PAIN IS NOT VISIBLE.

The medical "experts" become frustrated because they think they have done enough, and yet the patient continues to get worse; on top of that, their anxiety and depression increase.

Exactly when the doctor begins to disconnect is when the threat of death becomes very real.

I saw it, I heard it, I lived it. I begged, screamed and cried, I searched the entire country for experts----thankfully my son was open to seeing every new doctor I came up with over the course of his 13 year struggle. Finding a new doctor is the only way to be heard, at least for awhile. It is when the patient finally gets so tired, so empty, so financially desolate, and so resigned to a life of nothing but darkness and pain, that the writing is on the wall.

The absolute goal for the person in severe pain is always to find a way to make it go away------patients must and WILL find a way, as no one can live this way; ..........if only doctors could truly recognize this tragic truth.

There should be a wound or massive bleeding involved in migraines to get the doctor's attention----why is physical trauma given credibility and severe pain is ignored?

So what can I do to get the message out? I feel I must use our tragedy to help others. Who better to testify to the seriousness of this disease than someone who has experienced the very worst outcome? My son was no weakling, or someone who could find nothing to live for; his tragic words that he "had the perfect life, but could no longer participate in it in any way", that he "did not want to die, but could find no way to live", that we "treat animals in a more humane way that we do than those in severe chronic pain"............... and most of all, that he "wish he could just amputate his head and still live, because he really did want to live"........ His words need to be used to help the rest of you. One of the last things he did that brought him some satisfaction was to refer a friend of his to a doctor he had seen in Texas. This doctor could not help my son, but his friend regained her health. My son was so very happy about that--------------- so let's try to continue to make him happy by spreading his tragic story, and hopefully saving others from death.

I do need to be anonymous, as his girls do not know the truth about his "accident". The coroner ruled it "undetermined", but the report points completely to suicide, and I worry the girls will one day read that. Their mother believes it is best to hide the truth.

Hopefully I have not said anything here that would divulge our identity. I hope you can reassure me in this.

3/11/11 11:53pm

Thank you, grieving mom, for your very moving post and bravely sharing your and your son's story. You have not said anything that would divulge your identity, so don't worry about that, and we will respect your anonymity. I am glad you are sharing. You are *so* correct in saying that your story will help others. What a horrible tragedy and you have found a beautiful way in honoring his story and life by sharing with us. We, with disabling chronic Migraines really benefit from what you share.

I read your post to my husband and cried as I read it. You said, "My son was no weakling, or someone who could find nothing to live for; his tragic words that he "had the perfect life, but could no longer participate in it in any way", that he "did not want to die, but could find no way to live", that we "treat animals in a more humane way that we do than those in severe chronic pain"............... and most of all, that he "wish he could just amputate his head and still live, because he really did want to live".. I cried because I have said these things to my husband. Many of us feel what your son did. Thank you for sharing his words. It is powerful to speak them because in identifying that others feel what we do, we are in some way freed by them. We are not weaklings. Anyone who endures what we do, is a warrior. We are warriors who sometimes get run down.

I have a close friend with chronic Migraines who attempted and almost completed suicide this past year. She was in a coma in the ICU for several days with a crash cart next to her bed. Migraineurs wanting to escape from the endless pain is a conversation that happens often. It doesn't always mean that we are suicidal but it means we have had enough and are worn out! It is a battle. We are in a battle for our lives. And like you said, we aren't bleeding/ disfigured/or terminal, so friends/family members/doctors/others in the medical community don't realize that we are dying inside when do not find management/relief.

As I wrote above, I believe that one part of the solution is that we reach out to each other. Thank you for reaching out and sharing your story with us.

My heart goes out to you, that you have lost your son in such a tragic way. I am sorry for the girls that they have lost their father. I am sending gentle hugs your way.

Teri Robert, Health Guide

3/12/11 2:31pm

No, I don't think you've said anything to divulge your identify.

Teri

3/12/11 3:03pm

I have no idea who you are except a mother who needlessly lost her son, and words aren't enough to express my sympathy for you and your family. I believe your anonymity remains in place.

Your help with breaking the stigma of Migraine disease would be invaluable. Thank you for your generous offer. Now let's just figure out what to do. Please feel free to email me at anypoint.

Nancy

lynchic

3/14/11 11:09am

grievingmom.. my heart goes out to you and your family! The part that hit home for me the most was..

"and most of all, that he "wish he could just amputate his head and still live,

because he really did want to live"........"

It's so true! My boyfriend gets on me when I say this, but I truly wish I could have a "head transplant"! Those times when it is just unrelenting can be so unbearable. I truly do want to live, but you still ask the question "why me?".

3/11/11 3:41pm

I've been following your posts for some time now and really admire what you're doing. I don't know that I have a lot to offer but I was lucky enough to have an appointment at the Jefferson Headache Center yesterday and met a young girl in the waiting room. We had a very brief interaction but it really affected me. She's 16 (she was there with a kind man who I assumed was her Dad), and she's been to countless hospitals including Cornell, Cleveland Clinic, and Johns Hopkins for help with her headaches. She said she never has a day without a headache. She has even been hospitalized for them. We joked about Topamax and referred to it as 'dopamax' for how forgetful it has made us. She mentioned how at one point she had trouble completing an algebra problem because of it. Her 300 mg a day made my 100 mg dose look silly. She's only 16. I hate that a 16 year old even knows what Topamax is! I believe they said she's had these headaches since she was 13 but the minimum age to be treated at any serious headache clinic is 16. When will the science catch up with this disease??

Talking with this young girl put my own struggles in a completely new perspective. I think I've been in denial for the 15 years I've been fighting these headaches. It's taken me a long time ot accept that it really is a disease. It's a headache, how can it be a disease? I haven't been an active participant in the past but I'm ready to help make some noise!

Tracy

3/12/11 9:46pm

I too agree with these writers comments and observations and have been dealing with daily migraines for at least 2 years now and lost my last two jobs due to the factors associated with this disease. I currently am at the end of my rope and have no idea where to turn. I currently see a neurologist who thinks half my battle is over because of his advice "detox off all pain meds" and my life would be so much better.....well I have told him that this seems to not be the case but as long as he is optimistic my concerns and pain levels every days seem not to matter. I tried to get an appointment at a pain clinic for migraine sufferers in my area and was told that the doctor there is not seeing any new patients. Well I give up! I JUST DON't KNOW WHERE TO TURN ANYMORE and completely understand the disconnect between migraine sufferers and physicians. Maybe they should experience a day in our shoes and our pain levels and tolerance to this pain and not just tell us to DEAL WITH IT or some other mumbo bullshit! I am hanging by a thread and so tired of fighting!

Curly AL

3/13/11 12:57pm

Thank you for your thought provoking post. You have touched on so many important issues here and the comments have extended on that message. This article inspired me to write my own post on the subject. This is a disease where we have to learn to fight for all of the help we need whether it is from a doctor, the govenment or even ourselves in order to try to get by from day to day.

Candy

3/14/11 3:32pm

That's a very sad story. I don't know why migraine support groups have a hard time. Perhaps it is the fluctuating nature of the disease. You are so sick when you're at your worst and so unable to offer anyone else help. Then when you get better, it's all you can do to catch up with everything that didn't get done while you were flattened. I started a support group in a city of 100 thousand in hip NW Washington. I have a background in healthcare and I'm a chronic migraineur. I'm a pretty good organizer. It didn't last 6 mos. Attendance never made it above about 7 or 8, then eventually dropped off to nothing.

I personally have had fairly good migraine care over the years, but I have to continually advocate for myself. A gap I now see is good pain care. Docs are so intent on preventative meds, abortive meds w/ triptans, etc. that they have not recognized, at least in my own care, the need for occasional resort to something to address prolonged pain and discomfort.

Bob Dalton - NHF

3/14/11 7:18pm

Dear Nancy,

Your post and the comments that follow have been brought to my attention by three people I know and respect. You certainly have hit a resounding chord.

I certainly do not have all the answers and I am probably still learning a lot of the questions but I do have a few firm convictions about things we can do "stop the stigma of Migraine disease." The National Headache Foundation has moved in a number of new directions to try to make a difference - your participation and comments are welcomed.

The biggest thing we are doing is a series of Regional Conferences for health care professionals AND people with Migraine (and other headache disorders). The next one is in St Louis (Saturday, March 26 at the Sheraton City Center http://www.headaches.org/Regional_Conferences_Headache_Awareness_2011) and it looks like some of the people participating in this thread may be from that area. If you are not registered, please come. If you are registered, call your doctor and tell him/her to come - I'll waive the registration fee for any health care professional you recruit to the accredited Continuing Medical Education course we hold in the morning.

This concept is just getting off the ground and NHF is still figuring things out along the way but it looks like we are going to have 200 or more people with Migraine (or their family members) attending in the afternoon. The educational component is solid (Doctors Roger Cady, Todd Schwedt, Rob Nicholson, Richard Sohn, and Chris Friesen are presenting and Tim Smith, Jim Banks, Bob Kaniecki, and Susan Hutchison have all played a role in planning the day's curriculum) but, I think, the most important part comes after the "formal" presentations.

At the reception, in the halls, during the breaks - that is when people talk to each other and start finding common ground. I may have good ideas and you may have good ideas but that does not mean a thing unless someone acts on them - no matter how well we write or how often we post, it is my belief that it is only when we meet that we develop the trust and confidence to actually do something about the problem! Even though the education element of these programs is very important, it is more important that we leave each city with a cadre of people who are willing to work with us to carry on the fight against Migraine.

The reason so many other health care advocacy groups have made so much more progress over the past decade or two (who had heard of fibromyalgia or Susan Komen before then) is they have volunteers on the ground working to make things happen. I drive to work and I see a bunch of people in pink tee-shirts and I know they are doing something useful to stop breast cancer. It was not ads and grant proposals that made that happen - it took a groundswell of millions of voices.

Fifty percent more women will have Migraine than will have breast cancer. I am not willing to get into a debate about which disease is worse but I think your comments on cancer are completely valid. This is a serious problem and with 40 million people fighting Migraine and other chronic headache disorders, we can and should be heard.

A little over a week ago, we had our first Regional Conference in Augusta. It was a specialized one - aimed primarily at Iraq and Afghanistan veterans with PTSD and TBI related headache - so it did not have the attendance that St Louis (and the others) will have. Still, when the day was over, we came away with over half of the patients willing to volunteer (we are calling them Patient Advocates but nothing is etched in stone just yet) and many of them providing skills, connections, and potent ideas about how to make the next conference bigger and better. I believe that will be the case in every city we visit this year.

Please come to the conference - visit me, I will be at all of them and I want to meet you, hear from you, and, most of all, I want to find a way for you to help each other. We can find a way to raise awareness, raise funds, and raise hope - ten years from now, we can be the ones in (bright green?) tee-shirts filling the paths of some major parks in major cities while people drive by thinking "those are the Migraine people."

This is a long post, so I am not going to go into the two next biggest things we are doing differently (a 48 page, full color magazine and a whole new communications plan revolving around National Headache Awareness Month). I will come back to those ideas later. In the interim, let me hear from you about the conferences and other things you might suggest to change the public perception of Migraine!

Bob Dalton

Executive Director

National headache Foundation

rdalton@headaches.org

3/16/11 9:37am

Hi Bob,

Thank you for all your great work with the NHF. Volunteers are exactly what I am talking about; but from a patients view, run by patients, started by patients, or whatever the situation calls for.

What I don't understand is there are 37 million Migraineurs alone, and that does not include any headache disorders patients. So as you mentioned, while breast cancer is horrible, there are certainly less breast cancer patients compared to Migraine/headache patients, yet these folks are able to galvanize themselves as patient groups. While a patient conference run by the NHF is fabulous for all of us, I'm not sure this is getting to the core issue. And believe me, I do NOT want to reinvent the wheel - we already have groups out there who do wonderful things -just not run by patients! What we don't need is more confusion and misinformation for patients.....

Thanks for reading Bob, and I hope to see you in Chicago.

Nancy

Jamie

3/23/11 11:03pm

Part of the answer is part of the problem, imho. Coming out as a cancer survivor is something positive. "I beat this."

"Think Pink"

I'm the daughter of a breast cancer/ BRCA 2+ mom. SHE has even made the comment about the "noblesse" about the imagery of laying on a sick bed, perhaps feeling awful for a while- chemo, radiation, but there's hope for a CURE.

And with a CURE, there is not as much stigma. Also, more people come out as cancer survivors... Especially high profile ones.

But Migraine has no cure. For athletes (Like Andrew Bogut, who was benched due to his Migraine Disease- and for NO OTHER reason- missed games here and there, but not outrageously so.) However, it appears that he felt like his career was ending- accordign to the google alerts and the stories I kept reading.

Punished for cancer? Never- in fact- doted on, praised for strength. But being benched for Migraine? Perfectly acceptable.

Why?

It was a known factor when he was drafted (top 5 that year). In fact, he was doing worse.

So?

Andrew Bogut and Percy Harvin are big name players. What about players with less career stability (HAH!)

Sorry, rambling

Been thinking a lot today...

Dutchess

3/22/11 4:38pm

Hello everyone,

I am trying to get information to start a support group in my area. Then I could get the word out to others that someone understands and there is help. My preposoal is to get a many suffers help and inform they of other options.

I've have always wanted to but didn't know as much as I have learned today. The support I get online here has been great. For the last 3 years many have been there for me and I want to return that to others. I have already contacted some in my state on how I can help. Hope I hear back...crossing my fingers.

I'm just a little nervous on the outcome.

Dutchess

3/22/11 4:51pm

Uh oh...... I hope I 'm not reinventing the wheel. These meetings are support from one migraniner to another. A place to vent,cry or just a hug because they are having a bad day.

Others may have great ways on how they cope day to day.