I am…
- an American woman
- a wife
- a mother
- a former legal secretary (until Migraines got so bad I had to quit.)
- one of more than 36 million Americans living with Migraine, a genetic neurological disease that can be debilitating
I have lost jobs and friends because of Migraine disease, and I am tired of the misconceptions, misunderstandings, and downright lies about it that grow and spread like a malignant fungus on the Internet.
There are some wonderful web sites full of accurate and helpful information, but for every one of those, there are two others full of misinformation…
- some posted by some who are trying to help but are too lazy to do the research needed to post accurate information.
- some sites done by doctors who have treatments that work for some, but these doctors have gotten so full of themselves that they have falsely labeled their treatments as cures.
- some written by people who found off-beat ways to defeat their own Migraines and now are sure that the medical community and pharmaceutical companies are conspiring to keep their “cure” from the rest of the world. Many of these people never saw doctors for their “migraines,” and may never have had Migraines at all.
- some written by people I’ve come to pity – people who seem to feel empowered only when tearing down the work of others when their time would be better spend “listening” a bit to why only the very desperate will listen to them.
Sadly, many of us who come to the internet looking for help for our Migraines have trouble spotting the bad sites. I have decided to talk about some of them as I come across them. I will be discussing them with a couple of doctors I trust before posting about them.
Best wishes,
Arabella
Hi Arabella – What a great idea for a blog! I’m with you in being tired of all the “cures” and people with one-size-fits-all answers. Some folks just can’t seem to get their minds around the idea that there could be a complex issue that can be managed and ameliorated, but not cured, and that we’re not all the same. Thanks for taking this on!
- Megan
Great website, Arabella! I get frustrated (at the very least) or outraged (at worst) when I read about miracle cures, especially when desperate migraineurs fall for the claims and are spending TONS of money in hopes of a cure. I look forward to reading more entries from you!
While it’s true that no cure for migraine currently exists, the only way a cure will be found is through medical research. Your stories are touching and achingly familiar. Over 30 million people in the US alone share your pain. My daughter has lived a similar story. Our quest to help her revealed the shameful lack of resources going to migraine research. That is why we founded the Migraine Research Foundation, to fund basic science research to end the debilitating pain of migraine and to find better treatments, and ultimately, the cure. There is no quick fix – research is the only way. But don’t despair – there are lots of people who want to help. Visit us at http://www.migraineresearchfoundation.org and help make a difference. Spread the word!
Cathy Glaser, President
Migraine Research Foundation
We are currently doing migraine research in our Headache Center at Dent Neurologic Institute. I would like to add your blog on my site for a list of resources..by sharing stories and spreading information, migraineurs won’t feel so isolated as they did in the past and were told…”It’s just a headache!”
Mary Kay Betz MS RPA-C
Physician Assistant
Dent Headache Center
Welcome to the blogging community, Arabella! So happy you could join us in getting the word out there and dispelling those “migraine cures”!
Great work!
much needed site, way to go.
Arabella,
I could not have said it better!
Liz
You and I have a very similar views on this issue. I am an activist for migraine matters and will show no mercy to anyone who misrepresents our struggle.
Thank you for your great site!
Please take a look at my blog : http://drupal.zigguratt.com/forum/neurological_pain/the_battle_with_neurological_pain
I was wondering your view on thid blog site: http://migraine-pain.blogspot.com/
To be brief, I see it as poorly researched and oversimplified. With a basic knowledge of Migraine disease, it’s easy to poke holes in many of the posts. Some of it is old theory, some of it is… well I don’t know what it is. Certainly nothing that they could back with medical literature.
Arabella
Greetings -So glad to have found your website. I’m searching for help after 9 years of migraines. Currently I’m on a restrictive diet that seems to be helping. However, it is so difficult to find anything to eat. ! My backyard is fleetingly full of fiddlehead ferns. They are so ephemeral and delicious. Does anyone know if they are a significant trigger? Thanks so much for any help you can give me! Deetchnut
It keeps telling to to enter valid email address. It is valid. I hope this make it. this is the first site I’ve found that I think can help me.
fred
OK; I do get confussed. And have never blogged before. I don’t expect hand holding, but do hope for some patience. At 74 I don’t think it’s the age, however do think it’s the 25mg’s of Topomax 3 times a day. Doctor claims it will “prevent and reduce” migrains. Not cure. I take 100mg of Sumatriptan (Imitrix)at onset of migrain. I’ve tried other compinations and nothing has helped like the Imi & Topo. I do not like taking drugs, but being knock down by headaches most of my adult life, and they get worse I will take what I feel is best and rely on a family doc that I trust. I read A LOT and you make the most sense, Arabella.
Thank you
Hi, I just wanted to say thanks for starting a site with honest information! I am 44 and have had migraines since I was 12. I was first misdiagnosed and treated for sinus headaches for 2 years then, when my visual problems came along with them, they decided they were migraines. I have seen numerous neurologists and have been to 2 different headache clinics with no success. I have tried more meds than I could list here. My biggest complaint is that most places will try you on the triptan drugs and when they don’t work they don’t know what to do with you. I have a 15 year old daughter who also suffers from migraines, and, like her mother, triptans don’t work for her. I have been taking her to the headache clinic at Boston Children’s hospital. The last one we tried was Relpax and when I called to tell them that it wasn’t working they said not to use it any more (duh) and to send her to psychotherapy for two months. I said well, what am I supposed to do for her when she is in pain? Well, the doctor didn’t order anything else so, I guess take her to the ER. Do these people know what the ER costs? Do they know that I can’t go there 3 to 4 times a week? Do they know (or care) that all the therapy in the world isn’t going to change the fact that she gets migraines and still has to go to school and try to have a normal childhood? This kid is so sick of the school telling her that it’s all in her head (no pun intended) and now her neurologist prescribes psychotherapy and no rescue med so, that tells my 15 year old that her dr. thinks it’s all in her head too. I have to keep telling her that if it’s all in her head it’s also in mine, and her grandmothers and her aunts and her uncles, too. We are a long line of migraine sufferers and we are so tired of drs. giving up on us and no medications that truly work and are made for migraines.
I am having pain all the time that intimidates me and keeps me away from even writing comments or opinions like this one.
I am now disabled because I can no longer work or study. Migraine has ruined my life.
It started nine years ago with pain that itensified while studying for an hour or two. But now, the pain seems to have invaded me completely. I feel it all the time, and I am only watching the clock needles move from hour to hour. My suffering does not end! What kept me moving for six years is the hope that I would find some “magic cure” for my migraine. For three years now, I feel that I have given up the fight. I am at home most of the time, not leaving home for days. I feel depressed often, and nobody can help! I feel sorry for other people who suffer from daily migraines like myself.
I have no good relief so far. Triptans don’t work on me! No Imitrex and no Relpax.
I feel that doctors won’t help you if you migraine is sever enough. You are left only with one option: yourself and other migraineurs like you.
I tried many drugs and folk medicines, but no good response. I feel that my patience is worn out. I don’t even want to try something new or go to a doctor because I have no hope left for relief!
This is a great blog. Thanks for starting it. It serves a very useful function.
I am a migraineur who usually gets vertigo, tinnitus, hearing loss, and nausea–sometimes with other migraine symptoms including the headache.
I have improved lately thanks to avoiding triggers and using effective drugs.
What a wonderful website! Thank you Arabella and thank you to Teri Roberts for including it in your newsletter! I have been suffering from migraines now for 4 years (probably longer, but that is when they were officially diagnosed). I lost my job as a Legal Secretary because of them and haven’t been able to work since. I feel isolated and as if no one understands. I went to the Cleveland Clinic Headache Clinic for two years. Went through their IMATCH program which was a huge mistake. Bunch of psycobabble nonsense. After that it was as if they washed their hands of all of us who had gone through the program. The doctors all felt that what we had learned through the IMATCH program was, while not a cure, a way of living that should be incorporated and therefore the monthly doctor visits were unnecessary. HUH??? As I said, big mistake. I was better off before I took part in their pilot program. I now go to my family doctor who has taken the time to do some research on migraines and together we’ve put a plan of action regarding my meds. It’s not the best answer, but it’s better.
I hope to learn more from your website and those that you indicate as being ones we can trust. Thank you again.
Karen