Sunday, January 22, 2012
Sunday, January 15, 2012
Wanted to pop in to remind everyone that the Alliance for Headache Disorders Advocacy is busy at work trying to get Congress to hold the very first Congressional hearings about Migraine disease and other headache disorders.
As with their other initiatives, it only takes a very short time to sign this petition, and it's super easy. You just follow the link and add your first name, last name, email address, and zip code, and voila! You're done!
Now this is kind of like Presidential elections. If you don't vote, you loose the right to complain!
So, get off your tushies and sign the petition, for cyrin' out loud!
Sign the AHDA petition!
Sunday, August 08, 2010
"In order to bring new treatments to people with severe migraine we have to be able to measure the disability and impact of migraine. I am a physician who cares for and about people with severe headaches, but I have encountered a problem communicating with other doctors, scientists, and with my patients about how their headaches impact their lives. In order to determine this, I ask questions such as, “What effect does migraine have on your life?” or, “How do your headaches make your life different than it otherwise would be?”. The answers I get, often accompanied by tears, vary from the people who insist on focusing on the smallest effect–what one headache feels like–to those who give me a real feel for the big picture."You have to take the time to read the rest of this blog post, Disability, Impact and Migraine.
Thank you, Dr. Young, for all your hard work on our behalf.
Friday, July 02, 2010
Please, go read Migraines are Curable - Here We Go Again!
Great job, Arabella. Thank you!
Monday, April 19, 2010
For several weeks now, I've been seeing some disturbing posts on a Migraine forum that I sometimes read. To tell you about those posts, I need to give you some background on someone who is a frequent poster on that forum.
Ali Sultaneh is a doctor in Syria who has been claiming for several years now to have invented a surgery that can "cure" Migraines. In the last couple of years, other surgeons have developed treatments that Sultaneh says are "stolen" from his surgery. Sultaneh persists in posting diatribes about this supposed theft to online forums that exist for Migraine patients to share information and support, which is fruitless as patients can't do anything about his problems. On one of these forums, Teri has repeatedly suggested to him that he contact a lawyer or that he contact an investigative reporter at a large newspaper. If his surgery is anywhere near as successful as he says it is. the theft of said surgery would be a HUGE story, one that a good reporter would love to sink his or her teeth into. I've seen Teri make this suggestion to him at least twice, but have never seen him reply to that suggestion.
Just one more piece of background, then I promise to get to the point. Dr. Sultaneh has attempted to post about his surgery to the forum on About.com (when Teri worked for them) and MyMigraineConnection.com (Teri currently works for them.) On both of those sites, it's a violation of their terms of service for anyone to post to promote goods and services. It's considered spamming. So, when she doesn't allow him to post, she's doing her job. I asked her about this via email. Here's what she told me:
"I have not allowed him to post for two reasons:
- On About.com, MyMigraineConnection.com, and HelpForHeadaches.com, it's against the terms of service to post to promote goods and services. In plain old Internet lingo, it's spamming, and neither the companies nor I tolerate spamming.
- There is no cure for Migraine disease yet. It's that simple. There are treatments that are very effective for preventing Migraines, but nothing that can actually cure the disease. Thus, I allow no one to post that they have the cure because they don't."
OK. Here's what's going on now:
For some reason known only to Sultaneh, he has decided to attack Teri, saying that she's a "killer" because she hasn't allowed him to post about his surgery on sites that she manages. He glommed onto an article Teri wrote about a young woman who took her life after being treated like a drug seeker when she went to the ER for help with an out-of-control Migraine. Now, he's claiming that Teri is responsible for her suicide because she didn't allow him to post about his surgery.
Yesterday, he also posted on a forum (not one of Teri's) that Teri had emailed him and invited him to post on her sites, but that he supposedly deleted the invitation. Teri says she did not email him and would never invite him to post to her sites. I believe her, and that makes Sultaneh a liar on top of everything else. Another Migraine blogger has written about this and makes a similar observation in the comments on his recent post, Ali Sultaneh and His "Stolen" Surgery.
Sultaneh has attempted to post comments here, on my blog, several times to talk about his surgery. I too consider his comments to be spam and have deleted them all.
I wanted to write this so that anybody who is coming across these ludicrous accusations about Teri could know at least a bit about what's going on. I don't understand what Sultaneh thinks he can accomplish by attacking her. Even if what he says about his surgery is true, there's nothing Teri can do about it. Even if it wasn't against the rules, and she had let him post about his surgery, it's not as if any of her readers could have gone to him for treatment anyway. He's in Syria
Sultaneh, if you read this, I address this paragraph to you:
If what you want is to stop the supposed theft of your surgery and use it to help Migraine patients, you're going about it all wrong. Attacking Teri isn't going to get you anywhere. It not only makes patients angry; it will make quite a few Migraine doctors angry too. You're directing your anger and frustration at the wrong people. Teri can't do anything about your problems with your surgery. Quit being a total ass.
It seems right to me to close with some comments from Teri. I emailed her, asking her about this situation and for comments that she would allow me to quote here. From Teri:
"I have no idea what Mr. Sultaneh's thinking is that's led to him repeatedly posting calling me a "killer" and accusing me of causing Migraineurs to take their own lives. He seems to think that if I'd allowed him to spam the forums I manage and post about his surgery, that here would be fewer suicides among Migraineurs. I can't figure that out. Certainly, the one young woman he uses as an example couldn't have gone to Syria for treatment even if she'd wanted to.
I don't know if his surgery has any value or if the surgeons he accuses of stealing it have based their work on his or not, and that's not something I could do anything about anyway. That's a situation that needs to be addressed by the courts and the medical community. That's not me, so I just don't understand why he's attacking me.
I did not recently (or ever) email him and invite him to post to any of my sites. Period. I'm sick and tired of his attacks, but I won't stoop to his level by saying negative things about him."
Monday, February 15, 2010
What I'm seeing is Migraineurs who talk and talk about needing better care, but expect everything to be easy and essentially just handed to them. Let me explain. There are two main issues I'm seeing discussed:
- Finding a good doctor. Too many people expect to find a real Migraine specialist very close to home. One woman lives about an hour's drive from one of the top Migraine specialists in the country, but says that's just too far away.
Too far? Lots of people would be jumping with joy if a good specialist were that close to them. If you live in a big city, it can take an hour just to drive from one side of the city to the other.
Truth be told, when I see someone saying such things, I can't help thinking that if their Migraines were really as bad as they say they are, they'd make that drive.
- If it's not covered by insurance... Let me preface this by saying that I fully understand that some of us simply cannot afford doctors and medications not covered by our insurance. That's not the situation I'm talking about here.
I'll use a friend of mine as an example of the type of situation I'm talking about... Jane (obviously not her real name) has horrid Migraines that keep her in bed for days at a time, usually three or four times a month. Jane and her husband both have great jobs that pay very well.
Jane won't go to a Migraine specialist because there are none in her insurance network, so her insurance company won't pay for it. When her current neurologist suggested Botox to her, she wouldn't do it because, again, her insurance company wouldn't pay for it. Jane flat out told me that they could afford both the specialist and treatment not covered by insurance, but it would mean "cutting back."
Now, for me, "cutting back" would mean cutting back on essentials, but for Jane, it might mean cutting back to two or thee cars instead of the five they have... cutting back on cable -- right now they get every cable channel available... actually cooking a meal instead of ordering food delivered or going out at least five nights a week... fewer designer clothes... and so on.
My insurance company won't pay for Maxalt, but it's the med that works best for me when I get a Migraine. So, I eat out less, but fewer clothes, rent DVDs instead of going out to the movies. And that's OK with me. No, I don't think it's right that my insurance won't cover Maxalt, but all appeals have been denied, and there's just no changing that. Rather than moan and groan about my insurance company... rather than being sick in bed every time I get a Migraine... I suck it up, take responsibility for my health, and do what I need to do.
How about you?
Sunday, December 20, 2009
Hello, Fellow Migraineurs!
The December edition of the Migraine Disease and Headache Blog Carnival is up, and it's a great one!
This month's theme is "Advice on and experiences with holiday season stress. I hope you'll take some time to go visit the carnival and read the posts.
The carnival this month is hosted by Teri Robert on MyMigraineConnection.com. To visit this month's carnival, JUST CLICK HERE!