1. My diagnosis is: Chronic Migraine, Chronic Daily Headace
2. My migraine attack or headache frequency is: mild headache every day, migraine intensity headache varies, but when I get them the tend to turn “status” because the last so long.
3. The first migraine attack or headache I remember was: I was 27 years old. The weekend of my Dad’s birthday, we were at Stevie Rays Blues Bar, that headache lasted for 3 weeks
4. My pain levels range from: CDH: 2-3, Migraine: 5-8
5. I was diagnosed in: 2009
6. My comorbid conditions include: psoriasis, IBS, and most recently depression
7. I take __7__ pills each day for prevention and __2__ pills to treat an acute attack; and this doesn’t include injections, infusions, and blocks.
8. In addition to pain, other symptoms I experience include: photophobia, nausea, dizziness, difficulty talking, and sometimes numbers in my arm
9. Treatments I have tried include: medications, injections, blocks, massage, relaxation techniques
10. During a migraine attack or headache, I: a dark cold place
11. My migraine attacks or headaches are triggered or get worse when: my sleep schedule gets out of control (as in my insomnia is in effect), stress gets too high, or just because I’m breathing that day. I don’t have dietary triggers except that I can no longer drink draft beer.
12. The most frustrating part about having migraine or a headache disorder is: everything really. It’s put a strain on all aspects of my life.
13. Having migraine or a headache disorder causes me to worry about: my financial stability.
14. When I tell someone I have migraine or a headache disorder, they usually assume or say: ” I don’t know how you are working” or ” I have a headache but I won’t complain because it’s nothing like yours”
15. When I see ads or articles about migraine or headache disorders, I think: oh just shut up!
16. My best coping tools are: my friends/family help keep me grounded, music when I’m not having sound sensitivity
17. I find comfort in: be alone most of the time. So that I don’t have to explain to people what is wrong.
18. I get angry when people say: when I have to tell people more than once that I don’t feel up to doing something, like they don’t believe me.
19. I like it when people say: Your brain is a bastard! Because I agree.
20. Something kind a person can do for me during a migraine attack or headache is: make sure I’m stocked up on ginger ale and crackers, my staples.
21. The best thing a doctor has ever said to me about having migraine or a headache disorder is: I will not give up on you.
22. Having migraine or a headache disorder has affected my work/school life by: it’s made it hard to fulfill my duties at time and I often feel like I’ve let my co-workers down
23. The hardest thing to accept about having migraine or a headache disorder is: they don’t define me, they are just a part of me. Something I struggle with daily.
24. Having migraine or a headache disorder has taught me: to take help when it is offered
25. The quotation, motto, mantra, or scripture that gets me through hard days is: fake it until you make it and this to shall pass.
26. If I could go back to the early days of my diagnosis, I would tell myself: some days are totally going to suck, don’t dwell on those. Learn how to take your own advice.
27. The people who support me most are: some family and a couple of my “people”
28. The thing I most wish people understood about migraine or headache disorders is:it’s not just a headache.
29. Migraine and Headache Awareness Month is important to me because: Brain pains are bad. Awareness is good!!
30. One more thing I’d like to say about migraine or my headache disorder is: I could use a few could days here soon.

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

1. My diagnosis is: Chronic migraine with intractable pain, being treated for cluster headaches
2. My migraine attack or headache frequency is: all day, every day. Several peaks of increased pain during the course of the day. Cluster headaches come in phases.
3. The first migraine attack or headache I remember was: in high school, missing several days and laying in bed wondering if I was ever going to be back to normal.
4. My pain levels range from: 5-9, with a 10 once every few weeks. I hate classifying anything as a 10. Most of my daily life is spent at a 7/8.
5. I was diagnosed in: 1990, episodic. 2011, chronic. 2015, cluster headaches.
6. My comorbid conditions include: depression, anxiety, fibromyalgia, pre-diabetes, neck pain
7. I take __8__ pills each day for prevention and __0__ pills to treat an acute attack. I rarely medicate acutely due to ineffectiveness and side effects of meds. I have a potent nasal spray that sometimes is effective.
8. In addition to pain, other symptoms I experience include: sensitivity to my environment, nausea, diarrhea, irritability, fatigue, difficulty concentrating, flushed cheeks, droopy eye, tooth & ear pain, vision problems, neck pain, phantom smells
9. Treatments I have tried include: over 2 dozen preventative and abortive medications, hospitalizations, DHE, Lidocaine and Ketamine infusions, supplements, nerve blocks, biofeedback, dietary changes, massage, chiropractic, therapy, exercise/yoga, various birth controls.
10. During a migraine attack or headache, I: am really disabled, cranky, and sensitive, and am trying to figure out how to reduce my pain
11. My migraine attacks or headaches are triggered or get worse when: the weather is bad, I’m stressed, I’ve eaten something, I’m in certain phases of my menstrual cycle, it’s too hot, I get too little sleep, I go too long without eating, I drink alcohol.
12. The most frustrating part about having migraine or a headache disorder is: not functioning at the level I know I’m capable of, missing events, and not being the mom my kids deserve.
13. Having migraine or a headache disorder causes me to worry about: my family, my bills, my long term health, my social security, my lost career, my future.
14. When I tell someone I have migraine or a headache disorder, they usually assume or say: “Feel better”, “Oh that stinks”, or assume it can’t be that bad because I look fine.
15. When I see ads or articles about migraine or headache disorders, I think: most people are misinformed and don’t know the challenging truth.
16. My best coping tools are: The Office, my comfy sofa spot, my sunglasses, rest, and my cold face mask.
17. I find comfort in: knowing I am not alone, my husband and kids, peanut butter
18. I get angry when people say: “Have you tried…”, “I get headaches, too”, “So you still get headaches?”
19. I like it when people say: “Let me know how I can help”, “I’m sorry you’re still suffering”
20. Something kind a person can do for me during a migraine attack or headache is: help take care of my kids, help get my medication and get me settled, let me rest
21. The best thing a doctor has ever said to me about having migraine or a headache disorder is: “You’ve been having a hard time, let’s step back and re-evaluate”
22. Having migraine or a headache disorder has affected my work/school life by: causing me to leave my career
23. The hardest thing to accept about having migraine or a headache disorder is: that my life may be like this forever, and that I have not been pain-free for over 5 years.
24. Having migraine or a headache disorder has taught me: patience, acceptance, the strength of community, not to judge a book by its cover, disabilities look different
25. The quotation, motto, mantra, or scripture that gets me through hard days is: This too shall pass
26. If I could go back to the early days of my diagnosis, I would tell myself: be patient, and be prepared to fight for yourself and for a long time.
27. The people who support me most are: my husband, my kids, my close family, my migraine community
28. The thing I most wish people understood about migraine or headache disorders is: it’s more than just head pain, but the head pain can be horrendous. And just because I look fine does not mean anything.
29. Migraine and Headache Awareness Month is important to me because: it’s my opportunity to share my story and educate those in my life.
30. One more thing I’d like to say about migraine or my headache disorder is: it has made me the strongest and most resilient I’ve ever been in my life.

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

Curious about other readers’ stories? Here are all the 30 Things posts (in reverse chronological order) from this year and last.

30 Things posts have been coming in even though I haven’t promoted the project this year. Since readers are obviously eager to share their stories, I’m publishing this as a new call for submissions. I’ve updated the questions some from last year. All responses are welcome—whether you’ve never answered the 30 Things or did in 2015 and would like to take stock again this year. Here are my 2016 responses (and my 2015 ones):

Kerrie’s 30 Things About Life With Migraine

1. My diagnosis is: chronic migraine

2. My migraine attack or headache frequency is: daily (every time I eat unless I eat snacks that are 90% fat, no more than 270 calories, at least two hours apart, and contain a specific set of 10 foods)

3. The first migraine attack or headache I remember was: in class in the fifth grade. The teacher’s workroom off my classroom smelled of rose potpourri. I probably had attacks before that, but that’s the first one I know was a migraine attack. That smell still makes me panic nearly 30 years later.

4. My pain levels range from: Currently they range from a 2-4, with the very occasional 5. This is with a cocktail of preventive medications and supplements, continuous hormonal birth control, severe diet restrictions, and digestive enzymes. Before I found this regimen, the pain was regularly a 7-9 with some level 10 attacks (though I’m reluctant to label any of them a 10 for fear of tempting fate)

5. I was diagnosed in: 2002

6. My comorbid conditions include: depression, otherwise I’m remarkably healthy.

7. I take 21 pills (three different supplements/drugs) each day for prevention and 3 or 4 pills (two or three different drugs) to treat an acute attack

8. In addition to pain, other symptoms I experience include: fatigue and cognitive dysfunction are the worst; the list of other annoying, but not disabling symptoms is too long to tackle—it includes tooth pain, ear aches, cold feet, and frequent urination.

9. Treatments I have tried include: four dozen preventive meds and supplements, dietary changes, Botox, acupuncture, occipital nerve stimulator, Cefaly, Spring TMS, nasal surgery, TMJ surgery, a mouthguard, essential oils, organic food, acupressure, massage, Reiki, Chinese herbs (including scorpion tea), yoga, digestive enzymes… if you’ve heard of it, I’ve almost certainly tried it.

10. During a migraine attack or headache, I: have no energy and can’t think clearly.

11. My migraine attacks or headaches are triggered or get worse when: I eat or am exposed to odors. Currently, I get one almost every time I’m in a public place.

12. The most frustrating part about having migraine or a headache disorder is: not being able to function at the level I know I’m capable of.

13. Having migraine or a headache disorder causes me to worry about: every single thing I eat or drink (sometimes I even worry that water in a different city will be a trigger).

14. When I tell someone I have migraine or a headache disorder, they usually assume or say: “I’m sorry, me too” or “My friend/cousin/partner has migraine—it’s way worse than just a headache.”

15. When I see ads or articles about migraine or headache disorders, I think: the misinformation seems to be increasing exponentially.

16. My best coping tools are: mindfulness.

17. I find comfort in: reading, writing, my loved ones.

18. I get angry when people say: “It’s just a mindset” or “Think positive.”

19. I like it when people say: “You don’t have to talk about it if you don’t want to.”

20. Something kind a person can do for me during a migraine attack or headache is: ask me if I want company or to be left alone, and not ask a thousand times how I’m feeling.

21. The best thing a doctor has ever said to me about having migraine or a headache disorder is: “I will never give up on you.”

22. Having migraine or a headache disorder has affected my work/school life by: changing it entirely. I can only work sporadically, which is frustrating. But I’ve been pleased to discover that writing, which was a peripheral skill in my pre-disability world, brings me great joy.

23. The hardest thing to accept about having migraine or a headache disorder is: not having control.

24. Having migraine or a headache disorder has taught me: experiencing an emotion is a lot easier than running from it.

25. The quotation, motto, mantra, or scripture that gets me through hard days is: I’ve done the impossible before, I can do it again.

26. If I could go back to the early days of my diagnosis, I would tell myself: try a wide range of treatments before even considering surgery.

27. The people who support me most are: my awesome husband, family, friends, and readers

28. The thing I most wish people understood about migraine or headache disorders is: it’s nothing like getting an occasional headache.

29. Migraine and Headache Awareness Month is important to me because: the social stigma (from friends, family, coworkers, supervisors, teachers, and even health care providers) magnifies the physical symptoms.

30. One more thing I’d like to say about my migraine or headache disorder is: finding a therapist I click with has been invaluable. I have learned to get through a migraine attack without hating the fact that I’m having one, or stressing about everything I’m unable to do, or obsessing about what I could have done to trigger it.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

1. My diagnosis is:
Migraine, cluster, and tension headaches.
2. My migraine attack frequency is:
Completely unpredictable. I went two years with only half a dozen bad migraine days. Twice I’ve had an intractable migraine last for 5+ months. There’s no way to know when they’ll come or how long they’ll stay.
3. I was diagnosed in:
March 1, 2000. You never forget your first!
4. My comorbid conditions include:
Hashimoto’s thyroid disease.
5. I take 9 medications/supplements each day for prevention and 5 medications/supplements to treat an acute attack.
6. My first migraine attack was:
In the shower when I was getting ready for work. I blacked out from the pain and woke up in the hospital, where my mother stayed with me in the Peds ICU for nearly 2 weeks. I was 18 years old.
7. My most disabling migraine symptoms are:
Losing vision in my left eye, losing hearing in my right ear, dizziness, nausea, motion sickness, and feeling like Alice in Wonderland when she gets SO tall.
8. My strangest migraine symptoms are:
Seeing purple lava lamp like blobs dancing around. I call them the amoebas.
9. My biggest migraine triggers are:
Thunderstorms, wind, snow, and other major weather changes. Stress, not sleeping, not eating, and not drinking enough water.
10. I know a migraine attack is coming on when:
It hits me in the face. I have always described it as a pool ball smack to the left temple. I don’t have any other warning.
11. The most frustrating part about having a migraine attack is:
Whatever plans I had that day are out the window.
12. During a migraine attack, I worry most about:
How long will it last? Am I going to be ok in 4 hours? 4 days? 4 weeks? 4 months?
13. When I think about migraine between attacks, I think:
How lucky I am to have my mom who’s never left my side. How grateful I am to marry a man who’s completely willing to carry the torch forward. He’s gone to great lengths to understand my disease and learn how to take good care of me. I couldn’t survive these attacks without their love and support.
14. When I tell someone I have migraine, the response is usually:
“Oh you poor thing. I hope you feel better soon.” Then they get anxious as to why I’m not feeling better as soon as they would like me to.
15. When someone tells me they have migraine, I think:
“There’s a 98% chance they have no idea what they’re talking about.”
16. When I see commercials about migraine treatments, I think:
“Been there. Tried that. Didn’t work. Next!”
17. My best coping tools are:
Distraction, aromatherapy, sleep.
18. I find comfort in:
My faith. It helps knowing I’m not alone even in my darkest hours. When I don’t have the strength to fight my own battles, I simply ask God to carry me through and He always does.
19. I get angry when people say:
“Oh I get migraines too! I take two excedrin and lay down with a cold compress for half an hour. Then I feel much better!”
20. I like it when people say:
“I’m here if you need anything” and mean it.
21. Something kind someone can do for me during a migraine attack is:
Text me. Please don’t call! Texting lets me know you’re thinking of me and you care enough to reach out without making me answer the phone.
22. The best thing(s) a doctor has ever said to me about migraine is:
I’m willing to fight on your side for as long as it takes. We’re gonna get you through this together.
23. The hardest thing to accept about having migraine is:
I am not in control.
24. Migraine has taught me:
To be flexible. To let go. To forgive myself the times I can’t get out of bed and make the most of the times I can.
25. The quotation, motto, mantra, or scripture that gets me through an attack is:
“There may be pain in the night but joy comes in the morning.”
26. If I could go back to the early days of my diagnosis, I would tell myself:
Know when to say enough is enough.
27. The people who support me most are:
My mom and my fiancé.
28. The thing I most wish people understood about migraine is:
I’m not ignoring your calls, texts, emails, etc. If I haven’t hung out with you in a while, it’s not because I don’t like you. It’s because I’m in pain beyond reasonable comprehension. Let me know you haven’t forgotten me and I will treasure our friendship all the days of my life!
29. Migraine and Headache Awareness Month is important to me because:
Migraineurs feel alone, abandoned, left behind when we can’t attend birthday parties, dinners, holidays, shopping trips, vacations. If everyone understood a little more about what it’s like to live in the dark, afraid of light and noise and smells, perhaps they’d be more gentle with those who suffer.
30. One more thing I’d like to say about life with migraine is:
It’s dark in here. It’s scary. It’s painful. It’s quiet. If a migraineur shares their story with you, please know that’s sacred. It’s means we trust you and probably love you. So thank you for listening.

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres. Follow this link to learn how to share YOUR 30 Things about living with a headache disorder.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

A few weeks ago, you saw the story of Francesca, a 15-year-old who has new daily persistent headache. Kate, Francesca’s mom, shared her experience of parenting a teenager with NDPH.

What kinds of health care providers have been most helpful in
your daughter’s treatment?

Getting to this diagnosis was a long, difficult, and painful journey. Daughter kept complaining of headache after mono was supposedly over. Her doctor and several others could see no reason for a headache.

Started with pediatrician, then took her to ENT – discovered she had another sinus infection which was believed to be source of headache. Another round of antibiotics. Still complaining of headache. Back to ENT who put a camera up her nose, no sign of sinus infection.

Took her to a second pediatrician for second opinion as the headache was resulting in missing a lot of school. He performed an extensive battery of blood work, testing for everything including vitamin deficiencies. He called me and said, “there is no reason your daughter should not be in school, there is absolutely nothing wrong with her.” (He was wrong.)

Daughter started cutting school to stay home to sleep. When she was caught it was a real wake-up call for everyone. Her pediatrician said to take her to Stanford to see a pediatric neurologist. That was the first phase of getting to a real diagnosis. The neurologist immediately identified the headache as a chronic daily migraine, prescribed the COQ10, Maxalt and Topamax. We ended up changing docs after a few months as this one was very difficult to get an appointment with; Stanford had opened a new clinic in SF so transferred care to that site and saw a different Stanford neurologist for almost a year there. She took my daughter through the meds up through Propanolol and decided that my daughter would be better off at the adult headache clinic where, if accepted as a patient (she is a minor so it was up to the director) she would become eligible for more types of treatments. She had first appointment in July of this year – so far very happy with the clinic. On first visit there she was diagnosed with NDPH. It was bittersweet –having a name for this thing, but then learning more about it and slowly realizing how devastating it can be to a person’s life.

Do you have advice for anyone who is still searching for a doctor who knows about NDPH?

In our case, we did not know about NDPH until my daughter was diagnosed with it. If a headache is not going away, see a neurologist. Find a major medical clinic and go there. Major teaching hospitals are a good place to start. We are really fortunate to live near one of the finest medical centers in the world with a first rate clinic for headache and facial pain.

What other advice would you give someone with NDPH?
Don’t give up. Find a doctor that you trust. A doctor who also is a migraineur is a real plus.

Find a support group. You are often on your own in finding support. These seemed very elusive but I found a great group for parents on Facebook. It has been invaluable. It is a closed group, meaning you have to apply to be a member of the group. I cannot begin to tell you how alone I felt before finding that group, which has only been in the last six weeks. The collective knowledge in the group is amazing. There is also a group for teens and young adults. But even small children can have NDPH. As a parent it is critical that you find support and other parents to talk with. This is a huge, life-altering, debilitating illness. It is not a simple little headache.

What is the hardest part about your daughter having NDPH?

For the parent it is realizing that some of the dreams you have for your child may have to be adjusted. The route to college may not be the route you’d planned, you may have to look at alternate ways of just getting through high school. You have to be very flexible with your dreams, hopes and expectations.

It’s hard dealing with people who have no clue what it is and think that your kid is just pulling a fast one on you to get out of school. Let me tell you, it takes way more work to fake wellness than it does to fake illness.

School is stressful for both the child as patient as well as the parent. Even with a 504 plan, you really have to push and be your child’s advocate and sometimes it is exhausting. I know teachers have hard jobs but it is really discouraging when two out of six teachers show up for the 504 plan meeting at the beginning of the school year. It is especially frustrating to hear a teacher tell you that it is stressful for them to have your child in their class. Public schools are designed for healthy students. There is no mechanism in place to deal with a kid with a chronic illness.

It is hard to know how hard to push your kid. You have to communicate a lot to know when her physical limits are being reached. A lot of stuff doesn’t get done. Homework. Housework. A lot of stuff does get done: spending time together. Playing games together. When your kid is home by herself day after day, she is bound to get bored. She can’t sleep during the day due to the strict sleep regulations and is exhausted a lot, probably due to pain and depression. I’m a single mom working full time. But when I do get home, I have to try to push her to do some homework. She’s not always able to do it. Another side effect is an overall lack of organization, in part due to being overwhelmed by being so far behind, but I think the headache lends itself to that too. And if she’s had a true migraine, then she often gets a “migraine hangover.” Anyway, we play games together – there are a couple that we like to play on the iPad. One of our favorites is 7 Words. We don’t have traditional television, we stream everything. When she is feeling exceptionally crappy, I don’t limit the television. We have a couple of shows that we like to watch together, like “Big Bang Theory” and “Castle.” We do these things because she really isn’t up to doing other things like homework. It’s hard because I think others judge us, judge me for my parenting, and they are not in this situation. It’s really easy to say “If I were the one in that situation I would do X, Y, and Z.” But the reality is – we never truly know how we will react in any given situation until we are faced with it ourselves.

What else would you like to say about NDPH?

An UPside to NDPH is that I think it has brought my daughter me closer together.

Also, please stop asking me if my daughter’s headache has gone away. You will know if and when this happens. I will hire a skywriter and host the largest fireworks show known to mankind. It is not a series of multiple headaches, it is ONE LONG HEADACHE THAT NEVER ENDS.

Learning about other people’s treatment can help us figure out our own. Here’s what Francesca has tried and is currently doing.

Topamax, which was effective for about a year and got the headache down to a 2 or 3 on the pain scale. Then it stopped working. A sinus infection may have triggered the spike back up, it has been at a six or greater on the pain scale since February of this year. Verapamil, propanolol and microgestin (birth control) were all ineffective. Doxycycline was  ineffective and very poorly tolerated.

Also: tested for allergies, both for common things in the house and nature, and another for foods. Had several that were in the “might cause problems if around enough of it category” so we use special bedding to limit exposure to dust mites in pillows and mattress. Also on montelukast sodium (generic for Singulair) and loratadine (generic for Claritin) daily.

Recently started taking an anti-depressant at my request. While not exhibiting outward signs of depression, I think that it would stand to reason that someone experiencing pain at this level and also dealing with the social isolation caused by missed school would have to be somewhat depressed. Neurologist agreed, so prescribed escitaloprma oxalate (generic for Lexapro).

Ondasetron (generic for Zofran) for nausea brought on when NDPH spikes to migraine.

Botox – had her first round of injections in November, unknown if effective yet.

Acute meds: Originally was given 25 mg sumatriptan (generic for Imitrex); ineffective (we now know the dose was way too low, given at a pediatric dose for a person who at the time was already the size of an adult). Rizatriptan benzoate (generic for Maxalt) worked for about a year, then stopped working. Now taking sumatriptan at 100 mg and that is working to bring migraine down. NDPH remains. So pain goes from an 8 when spiking to migraine back down to a six.

Supplements: COQ10 and melatonin to aid sleep

Lifestyle:

• Absolute regular sleep schedule, in bed by 10 pm up at 6 am 7 days a week
• Sunglasses whenever outside
• Carries earplugs to use when around loud noise such as on school bus
• Sees therapist to work through issues about school/pain/teen life

Reader-submitted stories solely represent the personal point of view, experience, and opinion of the author, not of The Daily Headache or Kerrie Smyres.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

How is this relevant to headache/migraine/chronic illness? Hormonal birth control is one method of managing menstrually associated migraine attacks, which tend to be more severe than the migraines a woman has other times of the month. The patch and the ring provide a steadier dose of hormones than a pill does, which makes them more effective for this purpose.

I’ve been using NuvaRing continuously (with one-week breaks every three or four months) since January 2010 and it has been tremendously helpful. Now, the most severe migraines I get happen the few times a year I have to stop the ring for a withdrawal bleed. (You can learn more about skipping periods on The Well-Timed Period.)

This method is generally not recommended for women who have migraine with aura, who are at greater risk of stroke if they use hormonal birth control. However, I recommend talking it over with your headache specialist to decide if it is a good option for you, whether you have migraine with or without aura. Given the frequency and severity of my migraines, my headache specialist said he’d advise me to continue using the NuvaRing even if I did have migraine with aura.

(If you don’t want to/can’t use hormonal birth control for some reason, triptans can be used to prevent menstrual migraine attacks.)

I always love to read your comments, but I’m on vacation and won’t be able to reply until the week of Sept. 8. Please don’t think I’m ignoring you!

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

All hormonal birth control raises a woman’s risk of blood clots, but there is speculation that NuvaRing users are at greater risk than those who use oral contraceptives. Merck’s agreement to pay a $100 million settlement for thousands of liability lawsuits, announced on Friday, looks rather suspicious.

There are three studies that come into play when considering this risk. NPR summarizes them as:

“One funded by Merck, published in the journal Obstetrics and Gynecology in October, and another funded by the FDA, with data from Kaiser Permanente and Medicaid databases. The former found a similar risk for the ring and combined oral contraceptive pills. The latter found no difference in risk between new users of low-dose combined hormonal contraceptives and the NuvaRing or the birth control patch. (There was a higher risk found with pills that contain drospirenone, which is found in the pill Yaz.)

“But a study from Denmark, published in the British Medical Journal in May 2012, found a notably higher risk of blood clots from NuvaRing. Women using the NuvaRing were about six times more likely to get venous thrombosis than women who didn’t use any form of hormonal contraceptive. Compared to combined oral contraceptives with levonorgestrel, NuvaRing users were about twice as likely to form blood clots.”

Findings from the Danish study are not included in NuvaRing’s U.S. “label” (that’s FDA-speak for the detailed information that’s included with prescriptions). Again from NPR:

“FDA spokeswoman Andrea Fischer told Shots in an email that the agency ‘questioned the design and study population, and did not have the opportunity to independently review the original data.’

“For one thing, the study compares ‘all users,’ rather than just new users. ‘When using any hormonal contraceptive, the risk of blood clots is higher during the first few months of use,’ according to Fischer, so including both new and longtime users in the same study may make it seem like newer contraceptives are riskier, when actually new users of any method are already at a higher risk.”

The new versus all users distinction eased my mind considerably, though it still seemed kind of scary. The rest of NPR’s detailed explanation of the risks calmed me considerably. It’s too much to post here — it’s the entire second half of the long article — but take a look at Birth Control and Blood Clots: Women Still Weighing the Risk if you’re curious or concerned.

Personally, I’m going to continue using it for now. The risk just isn’t that great and I’ve already been on it for four years — if I were going to have problems with it, they probably would have shown up by now.

Still, since I’m older than 35 (the age at which women are warned to stop using hormonal birth control) and my migraines are no longer as constant or as devastating as they were when I started using the NuvaRing, I’ll probably go off it in a few months to see how I do without it. When I started hormonal birth control to manage menstrually associated migraine attacks, triptans were completely ineffective for me. Now that triptans are a viable option, they may ultimately be a better choice than hormonal birth control.

As with any medication, ask your doctor what your individual risk is given your own medical history and what your other treatment options are. With that information in mind, consider how much risk you’re OK with — a minute risk is acceptable for some women, for others any risk is a deal-breaker.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

That’s right, we’re moving to Boston in August! Hart was offered a job he couldn’t refuse. As much as I love Seattle, I’m excited for an adventure. I’m also terrified, but isn’t that a part of every adventure?

I hope better health and more time to write will coincide with the move. Although a change of location is unlikely to spur the change, birth control pills might. My migraines and headaches reduced in frequency and severity after I had taken birth control pills for three months. Unfortunately, they also caused horrendous nausea.

I’ve spent the last few months drugged up and conked out. Deciding I was better equipped to handle head pain than nausea, I stopped the pills last week. Sure enough, the nausea is gone, but head pain and general wooziness are back. I’m seeing a gynecologist tomorrow to determine what to try next. I imagine it will be a brand with different synthetic hormones. I hope I won’t have to wait another three months for them to take effect.

So, that’s what’s been going on in my life. I hope you have been doing as well as possible!

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

I’m in my fourth week of birth control pills. I’ve been spotting for the last 10 days, which I assume has contributed to the migraines. I plan to give the experiment a couple more months, but am not sure if I can make it that long.

I’m increasingly certain that allergies trigger at least some of my migraines. You may remember last spring was also horrible for me. Magnesium certainly was a factor. I wonder if allergies were also involved. Taking a Zyrtec yesterday appears to have reduced my agony tremendously. I had to reschedule yesterday’s appointment for allergy tests (for the third time) for later this month. (Please note that although allergies don’t cause migraines, they can be a trigger.)

My outlook is surprisingly good. Especially considering a bad appointment with my headache specialist Monday. The gist of the appointment: I have headaches and migraines that haven’t responded to treatment. With time, headache research will uncover more clues. Until then, why not try some more things in case they help? And I should think about medication to “make life bearable,” like morphine. (That’s a can o’ worms I can’t open right now.)

Back to the good outlook: If I have to live with migraines and headaches, at least I can do it the best way possible. I have a comfortable home; supportive, patient friends and family; and an understanding husband. My insurance covers a variety of treatments. I can stream NPR and audiobooks from the library. I eat good food that I don’t have to make. My life is as good as it can be right now.

I’m sad to not post more on the blog. I want to write about news and research. I want to share resources. I want to write about myself less. I want the blog to be like it was two years ago. Change is inevitable, so I’m trying to not worry about it much. Maybe I’ll get there again, maybe not.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.

Then the hormones from the birth control pills I started Sunday morning kicked in and triggered a massive migraine. It eased off today and I’m enjoying the break. My migraines will probably be more frequent as my body adjusts to the hormones. I’m trying to be extra vigilant so I can use abortives as soon into the migraine as possible.

It has been a tough week, but I’m in good spirits. Since this last migraine let up, I’m using my migraine-free moments wisely. I’ve spent four hours organizing the basement, made cookies and cleaned the kitchen. Now I’m working and looking through the picture window at falling snow. I have a pretty good life.

Studies show TheraSpecs migraine glasses can reduce migraines up to 74%, relieve painful sensitivity to light (photophobia), and protect you from fluorescent lights. Best of all, they are drug-free so there is no risk of medication overuse headache. Learn more and get your own pair at www.theraspecs.com.