Anyone interested in new Migraine treatments will be interested in this article...
It often starts with the aura.
Zig-zagging lines come into view, everyday light becomes searingly bright, and vision starts to slip. These are signals that a debilitating migraine is on its way.
“It’s like you’re possessed,” said Lorie Novak, who has suffered from chronic migraines since childhood. “I almost feel separate from my body, like it’s just this painful shell around me that’s not me.”
Novak, now in her 60s, is one of the roughly 35 million Americans who suffer from migraines. There are few effective treatments, and no new drugs have been developed since the early 1990s
The FDA issued a warning about serotonin syndrome that had many migraine patients in a panic. It warned of this "life-threatening" syndrome, although there wasn't a single death from it on record. The debate blurred the line between medication warnings and medication contraindications, increasing confusion rather than clarifying matters. The FDA does need to issue warnings from time to time. That said, this one seemed to be extreme and perhaps exaggerated.
This lesson includes video from an American Headache Society expert - information that gives us some background information to discuss the issue rationally with our doctors, pharmacists, and other health care providers.
Happy Sunday to my Migraine family! Some of you had a horribly difficult week. Here's hoping that next week is kind to everyone!
Today finds me feeling more than a bit melancholy. Some of my friends and I have recently discussed feeling this way, attributing it mostly to current events around the world - events such as terror attacks, war, the plight of refugees fleeing from war, the heart-breaking photos of innocent children in war zones, etc. We've also decided that the tenor, name-calling, and all the rest of the BS coming out of the Presidential campaign doesn't help matters any. For weeks now, we've talked with each other and concentrated on Migraine and Headache education education and advocacy efforts - mainly because we can't think of much to do about the issues that are bringing us down, but we cando something about education and advocacy.
Friday evening, I shared a link on my Facebook page about a woman with Migraine who uses DHE injections to treat her Migraine attacks. The story was about how dramatically the cost of DHE has risen over the years that's she's been using it. When she started using it in the 1980's it cost $180 for 10 doses. Her most recent prescription cost $14,729.99 for 10 doses. That seemed high to me, but when I priced it here, I found that 10 doses would cost $10,700.00. So, even though I found it at a lower cost, it's still prohibitively expensive, especially when you consider that it could take more than one dose to stop a Migraine attack.
One of the reasons this link caught my attention and one of the reasons I shared it on my Facebook page is that I know people who are having a terrible time affording the DHE their doctors have prescribed for them. Both as a Migraineur AND as an advocate, I think this issue needs attention - LOTS of attention.
I honestly didn't even look to see what site the link led to. That is, I didn't look until someone commented on it on my Facebook page saying, "Please keep political endorsements out of your posts. Surely there was another way to get this information." When I first saw the comment, I was stunned. Then I got angry. It's a Facebook page. It's MY Facebook page. What on earth?
Yesterday afternoon, I received a private Facebook message from the woman who posted that comment. She apologized, saying that she had a Migraine when she made the comment. I thanked her on Facebook, and if she's reading this, I thank her here. I truly appreciate and totally accept her apology. Migraines can really mess with us, and I can totally understand.
Had her comment and subsequent personal Facebook message been the end of it, I wouldn't be writing this post. Later on yesterday afternoon, I received a private Facebook message from another Facebook "friend." Again, I was stunned. Then I was frustrated, hurt, and angry. That message said:
"You're supposed to be a patient advocate so you shouldn't be taking sides in the upcoming election or posting links to candidate web sites. Your opinions should be kept to yourself. I have always respected you and your work as an advocate, but if you continue posting political endorsements, I'm going to unfriend you."
What? First of all - again - my posting the link to that article wasn't a political endorsement. I posted it because of the issue with predatory pricing of DHE.
Now, I want to make a few points:
Nobody is going to agree with another person all the time. That's just life. Anyone who accepts only people they agree with all the time are going to get very, very lonely.
Everyone is entitled to their opinions - even patient advocates.
It wouldn't be at all out of line for a patient advocate to endorse a candidate based on their positions on health care and other issues that impact patients. I choose not to - precisely because of nonsense like this.
I am not a machine programmed to always say what others want me to say.
I am a Migraine patient, much like those for whom I advocate. Being an advocate doesn't make me perfect; nor does it take away my rights to free speech as an American citizen.
It is not a sign of respect to attempt to tell someone what they can and cannot say or threaten to "unfriend" them on Facebook because you disagree with a link they post.
Wrapping Things Up:
I've grown weary of rudeness, intolerance, and negativity. The tone and aggression of the current Presidential campaign seems to be spilling over onto other people. To me, all the name-calling, negativity, and nonsense of the campaign is unacceptable. Thus, it follows that I also find it unacceptable when such attitudes aimed at me or anyone else.
Yes, I'm a patient advocate. But, I'm also a person and patient in my own right, and I have strengths and weaknesses, feelings, the right to express myself, etc.
Here's something I hear people asking over and over again, and I echo it, "Why can't we all just get along?" Whether we believe in "the golden rule," karma, or whatever, we should be treating others as we wish to be treated. Imagine how much better everyone's lives would be if more people lived by that rule!
"But I don't want to take daily meds for Migraines." That's a statement I hear on a regular basis. Guess what? I agree! I don't want to take medications every day for Migraine prevention either.
On the other hand, what's the alternative? If you Migraines are infrequent and not very severe, you may not need to take daily meds. For people like me who have very frequent and severe Migraines, the alternative to daily meds is those frequent and severe Migraines.
For those of us with Chronic Migraine, there's a possible alternative to daily meds. Botox (onabotulinumtoxinA) injections, which are usually repeated every 90 days, have been very effective for some Migraineurs. It was also approved by the FDA for the treatment of chronic Migraine, so most insurance companies cover it. For me, Botox treatment has reduced the number of Migraines I get by 66% and has helped in other ways as well, such as being less sensitive to light between Migraines. If you want to see where the Botox injection sites are, see this diagram. Some of us who use Botox still find we need to take a daily oral medication as well. This isn't unusual. It's actually pretty common to need multiple preventives to manage our Migraines as well as possible, but many using Botox find that they now take fewer oral medications.
In the end, it boils down to this: Migraine is a genetic neurological disease for which, at this time, there is no cure. We need to ask ourselves what our reaction would be if we were thinking about daily medications for other diseases such as diabetes or thyroid disease. I think most of us would have a different reaction to daily meds for other diseases. So, it's time that we acknowledge Migraine as a disease that needs to be managed.
Join Us for the 2015 Patient Conference on June 21, 2015!
For some time, it was theorized that the nausea that many people occur during a Migraine attack may, in part, be caused by gastric stasis. In simple terms, gastric stasis is delayed emptying of the stomach.
Research has shown that the nausea of Migraine isn't caused by gastric stasis, but gastric stasis is still thought to be one reason why some Migraineurs don't respond well to oral medications during a Migraine attack.
This is one reason that in addition to the current injection and nasal spray medications available for aborting a Migraine, there are two new Migraine medications awaiting FDA approval:
Combining Migraine abortive medications such as the triptans - Imitrex (sumatriptan), Maxalt (rizatriptan), Zomig (zolmitriptan), Amerge (naratriptan), etc., - with antidepressants and some other medications presents a risk of developing a rare condition, serotonin syndrome.
The FDA issued a warning about serotonin syndrome, and some people, including some pharmacists and doctors think it meant that these medications, all of which can be quite effective in the treatment of Migraine, can never be taken together. That, however, is not the case. Many people use them quite safely.
FDA warnings are important, and they can be vital to safely using medications. That said, the information in FDA warnings doesn't stand alone. It should be studied and weighed with all available dependable information. Fda warnings shouldn't induce panic, and they should be discussed with our doctors when they cause us concern.
So, what does the FDA warning mean to us?
The Food and Drug Administration (FDA) issued a public health advisory about potential risks of taking triptans together with SSRI and SNRI antidepressants. The advisory states, "A life-threatening condition called serotonin syndrome may occur when triptans are used together with a SSRI or a SNRI."
Serotonin syndrome occurs when the body has too much of serotonin, a chemical found in the nervous system. Serotonin syndrome may be more likely to occur when starting or increasing the dose of a triptan, SSRI or SNRI. Symptoms of serotonin syndrome may include:
loss of coordination
fast heart beat
rapid changes in blood pressure
increased body temperature
If you are taking a triptan and an SSRI or SNRI, consult your doctor before discontinuing any of your medications... The FDA suggests that doctors prescribing a triptan, SSRI, or SNRI follow certain steps...
The FDA has reviewed 27 reports of serotonin syndrome. In 13 cases, the patients were hospitalized. Two cases were considered to be life threatening. None resulted in fatality.
This advisory is neither totally new information nor any reason to panic if you are currently taking this medication combination. Triptans already carry a warning in their prescribing information warning of possible problems when also taking antidepressants. Serotonin syndrome, although possibly fatal, is not common. If you are concerned about your medications, contact your physician.
If vomiting during a Migraine attack makes you think your medications didn't "stay down," think again.
It's extremely important to talk with our doctors about our treatment plans and have his or her advice about what to do if that happens. Depending on a number of factors, a significant amount of medication can be absorbed into our systems in a very short time after swallowing them.
Even "safe" over-the-counter medications can cause serious, even fatal problems before we realize we've taken too much. It's an older case, but the memory of this one will always stick with me. In 2003, a 17-year-old girl turned to Tylenol for Migraine pain relief. Shortly after taking it, she vomited, so she took more. The Migraine and vomiting continued, and Kellie took 20 tablets in a 16-hour period. The last thing she said to her mother was:
There are over 100 medications and supplements being used for the prevention of Migraine and headache. When we get frustrated with trying to find preventive treatments that work for us, it's helpful to remember that there are so many options.
Do you know how many of them are actually approved by the FDA for that purpose? Do you know how many of them were originally developed for Migraine and headache prevention?