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For heaven sake, how hard would it be to say "headache and/or" Migraine rather than continuing to feed into the myths and misconceptions by continuing to use the word "headache" alone to indicate both?
If we can't count on the NHF, an organization that is supposed to be leading the way toward public education and awareness, on whom can we count?
Thankfully, the other "experts" here at MyMigraineConnection seem to get it. Thank you, to all of you wonderful, wonderful advocates!
A few simple changes in this post by the NHF could make a world of difference. Starting with the title -- why couldn't it have said, "Getting your headache and Migraine Diagnosis Straight?" I could make a long list of examples, but instead, I'll just cut to the end of the post:
NHF Suggestions to Helping Determine Your Headache and/or Migraine Type:
• Keep a headache and Migraine diary. Identifying patterns among migraine and headache triggers, timing, duration and pain level and location offers useful information to share with your healthcare professional to help determine the headache type you are dealing with.
• Educate yourself about headaches and migraines. Specific Migraine and headache resources are available on the NHF Web site (www.headaches.org) to educate sufferers on possible headache and Migraine types, symptoms, and potential treatment options.
Oh, and it would also be nice if someone from the NHF gave a damn and could be bothered to answer comments to their posts.
Abi
PS: I'd love nothing more than to quit complaining about and to the NHF, and I'd bet the other people who keep writing comments about their posts feel the same way. BUT, ignoring these comments won't make us go away.
I adore what was said in this article about diagnosis, but have to add my comment that headache doesn't necessarily mean migraqine, and migraine doesn't necessarily mean headache. What's the old saying? "Say what you mean, and mean what you say."
One of my biggest problems with my migraines was that I was misdiagnosed for so long. Just as big a problem in coping with living with this blasted disease has been the attitudes of so many people around me. It seemed that all people could think or say was things like:
"It's a HEADACHE! Suck it up and quit whining."
"All of this fuss over a HEADACHE. Get over yourself."
"If you'd keep working, you'd forget about your HEADACHE."
Do you see the common thread here? Headache? Migraine?
One of the very best things that ever happened to me was finding this site and discovering that migraines are a disease. It gave me validation and the nerve to stand up to those people and tell them to get a clue or leave me alone.
There aren't that many non profit groups for people like us, and when one of them won't help teach people about the difference between headaches and migraines, it's really not helpful.
"Say what you mean, and mean what you say."
Arabella
PS: I realize that this article was from the NHF, not anyone at My Migraine Connection. Anyone from My Migraine Connection have anything to say about this?
All you wankers need to quit yer bitchin.
It's a freakin headache. A migraines just a headache that hurts more. Take some asprin or tylenol for god sake.
Did it ever occur to you that the NHF is right and headaches and migraines are the same thing and you're all full of crap?
Chill. You'll live longer.
What a stupid comment! Obviously you have never had a Migraine before. You are right a Migraine does include a headache which hurts more than the average headache but experiencing a Migraine is so much more than just the headache!
It's a terrible thing to have to go through, I wouldn't wish it on anybody!
Firstly, I start to feel like I am out of my body (weird I know) My senses change. I hear things differently, my smell and also sense of touch change. A few hours later my sight changes (which is the most terrible thing for me) I get blind spots and can't see. This is especially scary if I am alone. About 30 minutes after I get the headache which is like your head being crushed in a vice! Then my body goes numb and I get pins and needles down one side of my face and my body. Then I start vomiting. You literally vomit until you have nothing to be sick on, even then it doesn't stop! You start vomiting foam and stomach fluid (which is REALLY not nice). And this goes on for hours. In all my life I have never experienced anything as bad as a migraine.
I have headaches, I have tension headaches and then there's migraines! Believe me I know the difference. I just wish everybody else did! If a migraine was just a headache I could cope with it, it's everything that comes with it that makes it so hard to deal with.
I am well aware of the controversy surrounding the interchangeable use of the terms headache and migraine. The point of the article was that diagnosis is the most critical step to getting the appropriate treatment. While I do appreciate the strong feelings that some people hold regarding the term migraine, it is also important to use the term headache, which as I wrote, "means different things to different people." The NHF uses the terms interchangeably as often those who have migraine don't use that specific term for their headache. Sick headache and stress headache are frequently used to describe migraine. Many migraineurs think that if they don't have nausea/vomiting and/or sensitivity to light/sound, they don't have migraine, when they actually do. These people may still take time to read the information the NHF provides when the more generic term of headache is used. In their reading, they may come to the conclusion that they are, in fact, experiencing migraine. Our goal is to educate those who don't understand that they may be suffering from migraine which is why we try to have material written in language that will resonate with them. The educational process is ongoing and, hopefully, if we provide information using terms with which they identify, they will recognize that they have migraine and will pursue material on that topic. The converse is true for those who have a different type of headache thinking they may have migraine. At the end of the day, we all have the same goals. We want to empower those who live with this neurobiological disease so that they suffer less and enjoy an improved quality of life. Let's keep working to find ways to reinforce each other's efforts for the betterment of all headache sufferers-migraine and others.
I agree. The point of the article was to get the "headache" diagnosed. Really, so many people use over the counter medications and suffer needlessly. I was one of them. I took way too many advil try to treat awful headaches then progressed to excedrin until those made me sicker than I felt. After all, it was just a headache. Finally I went to my doctor. Then I did more research and a year later came back. A whole year! It took me about 2 years to get myself to the doctor enough times for a correct diagnosis and then he retired and unfortunately died. So I was back at square one. The point is I'm one of those folks who wanders the OTC aisle looking for something to help.
I've had my "headaches" diagnosed as everything from tension to chronic daily to cluster to mixed with tension. Guess what? I don't really care what the diagnosis is as long as the meds I get to treat them are effective. I've got preventive meds that help both the chronic and migraine??? (though nobody has ever used that word for the right sided headache with nausea I get very consistently before my period and at other times throughout the month) and now we're working to help cut the chronic/tension. a bit more. Plus I've got all the acute meds I need to treat the "migraine" (or cluster as they were originally diagnosed - very doubtful). So medicine wise - despite an iffy diagnosis - my "headaches" are being treated and that's what I'm concerned about.
If one (or hopefully many) person reads this and keeps a log or diary or even just GOES to the doctor and gets help for their as yet undiagnosed headaches, this article will be worth it to them!
I am 30 years old man suffering from daily persistent headache for years concentrated on centre of forehead. NO FEVER, NO VOMIT, , MRI SCAN is normal.Its Throbbing headache sometimes worse, but never goes always,
I have tried medicines as prescribed by Neurologist with absolutely no help. Cap. Fulanrizine (calcium channel blocker) Tab. Vosograine (ergotamine, caffeine, and prochlorperazine) Tab. wysolone (Predinosolone ) Cap. Betacap propranolol Tab. Alprax (Alprazolam) Tab xenobid (Naproxen) Tab suminat (Sumatriptan) Tab. Amixide (chlordiazepoxide and amitriptyline) Tab.Ciplactin (cyproheptadine) Tab. Rantac, Tab. Epilex (Sodium volporate ) also one Injection Botox , but no change in nature & severity of headache .
it is daily headache from the onset, no change in nature of headache for last 10 years, no sinus problem , No overusage of analgesics medicine as have not used any medicine for last three years and tried aqua pressure, acupuncture , but again no change in nature of headache
I've experienced disabling migraines for 41 years. Daily. From 1968 until now, 2009, the ONLY relief I ever found was ergotomines in the suppository form. Used to be called Cafergot, now called migergot. I wouldn't suggest anyone take this daily as I do, even though I don't have to take increasing amounts because of building a tolerance. Good luck. Still looking for relief after all these years.
A member of our family has been diagnosed with basilar migraine syndrome. He sees a neurologist and a primary care physician. They have prescribed a number of medications, none of which seems to have had much effect. He avoids the foods that are thought to be migraine triggers.
He has more bad days than good days so that he cannot drive and leaves the house rarely. Because these episodes come on so suddenly, we do not leave him in the house by himself. His episodes involve loss of balance, slurred speech, vision problems, and short-term memory loss in short, his symptons mimic those of a stroke. We know the doctors are doing as much as they feel they can but we would like to contact other people who have experience with this kind of illness. He feels, as we do, very isolated.
Hi, Emily,
We do have other members here who have basilar-type Migraines. You might want to write your own SharePost about it and ask others to comment to share information and support.
You might also want to check out our discussion forum to talk with others with that form of Migraine. You'll need to register again once there because it's a separate membership database, but you can use the same member name, email address, and password that you used here. You can find our forum at http://forums.healthcentral.com/discussion/migraine/forums.
Teri
Dear Emily:
Thank you for your post on Teri's site. I am a staff member of the National Headache Foundation and as a result receive a variety of requests for online sharing by way of our email pen pal match program. Ironically, I have one that I am unable to match because she also is diagnosed with basilar migraine syndrome. If this is something that your family member would like to participate in when feeling well enough, and as a personal method in which to seek additional support, please don't hesitate to visit www.headaches.org and select the education-programs index on the left of the home page, and then the email pen pal program. Learning how other's cope is one of the best methods in which to break that true feeling of isolation. Thanks, Susan
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I'm happy to see this post!
BUT, there are a lot of groups and organizations out there that use Migraine and headache interchangably. Education and use of proper terminology is key when trying to help educate and determine what is going on.
I know I myself get very upset when I see "headache" used when it is actually Migraine. I even get on my doctors case when he uses 784.0 as a diagnosis (which is headache) instead of 346.00 (or any of it's variations, which is Migraine).