By

30 Things About Your Life With Migraine

This is a reader-submitted story.

1. My diagnosis is: Chronic migraines with aura, Vestibular migraines, Menstrual migraines, Persistent migraine auras.
2. My migraine attack frequency is: Daily
3. I was diagnosed in: 1997
4. My comorbid conditions include: Fibromyalgia, Hypothyroidism, Asthma, Hypomobility syndrome, peripheral neuropathy
5. I take __5__ medications/supplements each day for prevention and __3__ medications/supplements to treat an acute attack
6. My first migraine attack was: When I was 20
7. My most disabling migraine symptoms are: Vertigo since it does not go away.
8. My strangest migraine symptoms are: Persistent migraine auras, since there are a lot of bizzare visual weirdness going on.
9. My biggest migraine triggers are: Lack of sleep, too much sleep, hormones, sunlight, weather
10. I know a migraine attack is coming on when: From the aura.
11. The most frustrating part about having a migraine attack is: The decrease in capacity to function.
12. During a migraine attack, I worry most about: Trying to function at work, driving
13. When I think about migraine between attacks, I think: There is only a small gap to live in and even between attacks migraines affect the brain. Photophobia is a good example of that. Vertigo is another.
14. When I tell someone I have migraine, the response is usually: Oooh sounds like a really bad headache.
15. When someone tells me they have migraine, I think: I feel for you. I really, really feel for you.
16. When I see commercials about migraine treatments, I think: I mock them and laugh
17. My best coping tools are: Meditation, ice, relaxation breathing, distraction
18. I find comfort in: hobbies like blogging, writing and reading.
19. I get angry when people say: Migraines are not a disability.
20. I like it when people say: They don’t understand how I could function with such pain, because they grasp the problem.
21. Something kind someone can do for me during a migraine attack is: Be quiet, get me my ice and migraine balm, keep it dark and give me some time to relax.
22. The best thing(s) a doctor has ever said to me about migraine is: Is that even the best preventative would never bring me down beneath chronic at this point, so we needed to add in lifestyle changes. At least he was honest.
23. The hardest thing to accept about having migraine is: The effect on my life, my career and my future.
24. Migraine has taught me: To compromise, to accept my limits, to live in moderation.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: This too shall pass. I repeat that when in severe pain… because That severe painful episode will pass.
26. If I could go back to the early days of my diagnosis, I would tell myself: To get treatment early. That things can get very complex.
27. The people who support me most are: My mom and my spouse.
28. The thing I most wish people understood about migraine is: How complex treatment is. How difficult it is to handle this pain long term.
29. Migraine and Headache Awareness Month is important to me because: To help raise awareness about the affect this has on lives.
30. One more thing I’d like to say about life with migraine is: That it is difficult to have a life with chronic migraines. It is living in the pain gaps, when you have them. It is a life by inches.

Reader-submitted stories solely Migraine and headache disorders 30 Things memerepresent 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.

By

NuvaRing for Menstrual Migraine: Blood Clot Risk?

Since starting the NuvaRing to manage menstrually associated migraine attacks four years ago, I’ve recommended it to numerous women who have migraine without aura. The NuvaRing is more effective than birth control pills because it provides a steady dose of hormones, while hormone levels still fluctuate throughout the day with the pill. But recent reports have raised questions about NuvaRing’s safety.

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.

By

What’s With My Head: New Headache Specialist, Menstrual Migraine, Allergies & Reading

New Headache Specialist
I saw the headache specialist several readers have recommended and really liked him. After more than two hours with me (we had to schedule a second appointment to fit it all in!) he speculated that some of my headaches are actually caused by new daily persistent headache. In the past, my chronic daily headache was always attributed to migraine transforming to everyday.

Although the doctor wants to see me monthly, the next available appointment is in March. Before then I’m supposed to get a lumbar puncture (spinal tap) and more blood work. My last lumbar puncture resulted in a three-week headache and wasn’t responsive to a blood patch. I’m not looking forward to it.

Menstrual Migraine
I got a birth control pill prescription to see if it will manage the two-day migraines I get when my period starts. In typical fashion, I haven’t filled the prescription. The migraine that kept me in bed my first two days of vacation in Mexico should motivate me to to take it to the pharmacy.

Allergies
After always feeling worse after vacation, I finally admitted my headaches and migraines are worse in Seattle than elsewhere. I was in Kansas for a funeral the last weekend of October. I was shocked to wake up two mornings in a row with a barely perceptible headache. Nor was I as congested as I always am at home. I took Zyrtec for a few days and both my congestion and migraines were less. Not a reliable experiment. It unfortunately made me nauseated, so I couldn’t keep taking it. I’m trying Claritin now.

When I was tested for allergies when I was 14, I responded most strongly to mold. That wasn’t an issue in Phoenix — quite the opposite in Seattle. Studies indicate than while allergies don’t cause headache, they can trigger migraines. Thursday I’m seeing an allergist and will probably get tested for allergies. Maybe she can sort something out.

Migraines Triggered By Reading & Working on the Computer
These are still in full-force, hence my infrequent posts. A loved one who is an ophthalmologist gave me a thorough vision and eyestrain exam when I was in Phoenix for Thanksgiving. The diagnosis was convergence insufficiency. That means:

Convergence insufficiency occurs when your eyes don’t turn inward properly when you focus on a nearby object. When you read or look at a nearby object, your eyes should turn inward while you focus, so you can see a single image. But if you have convergence insufficiency, you need to use extra effort to move your eyes inward for focusing. This extra effort results in various symptoms, including eyestrain.

I’m now using an eye patch when I read or am on the computer. So far, I’ve been able to squeak out about an hour on computer with it. I still get a headache if I push it, but it is mild and doesn’t explode into a migraine. If the eye patch continues to be OK, I’ll get prescription reading glasses with a prism, which I can wear over my contacts.

By

Maybe Birth Control Pills Would Be OK

Talking to Hart about hormonal birth control, migraine and stroke risk got me wondering what my risk really is. If it is low, multiplying the number by eight isn’t that big of a deal. Kersti explains this well in her comment on the post:

[T]he problem with statistics is that they’re misleading. 8 times more likely… 8 times what? You need to find out what the baseline actually is, and you need to find it out for your own ethnicity, gender, circumstances before you know if this is a problem. If for example the baseline is 10% then 8 times is pretty ghastly, however, if the baseline is 0.01% then you’re still at 8 times 99.92% likely to NOT get one.

I’m kind of embarrassed I didn’t think this through before I wrote the post. I’m always urging readers to think critically. No matter how much I recommend caution, I too fall into the trap of fear. “Stroke? Eight times more likely? No way!” is how I reacted yesterday.

According to the American Heart Association’s stroke risk factors, I’m at very little risk. That’s reassuring. I’ll talk with the doctor on Monday and see what she recommends.

Check out the this BBC article on understanding — and critically evaluating — statistics, which Kersti suggested.

By

Sorting Out My Hormonal/Menstrually Associated Migraines

As the frequency of my migraine episodes has reduced this year, I was finally able to tell that I always get a migraine the first and second or third day of my period. Today once again provided confirmation.

My plan was to try hormonal birth control, like the pill, as a preventive. Researching this post has me reconsidering. Turns out women with migraine who use birth control pills are eight times more likely to have a stroke than women who don’t. This applies to everyone with migraine, not just those with aura (who are twice as likely to have a stroke than migraineurs who don’t have visual auras).

Other treatment options exist. Most of them I’ve already taken without success. Magnesium, which I think is responsible for decreasing the frequency of my migraines, is a common treatment. Unfortunately I’m already at the highest dose of magnesium I appear to be able to tolerate without extreme nausea.

I found on headache specialist Christina Peterson’s website that a small study of black cohosh shows it may be effective in treating menstrually associated migraine. Because there has only been one study, there is no confirmation that it works. Nonetheless, I’ll be researching black cohosh extensively. It is in the same family as rununculus, one of my favorite flowers — maybe that’s a sign it will help my head!

I thought hormonal birth control would be the ticket. A stroke would certainly be worse than having two more migraines a month.

If your migraines are associated with your menstrual cycle, please let me know if you’ve found an effective treatment. Leave a comment below or respond to the forum post with your suggestions.

Related Posts: