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30 things about Dave’s headache

This is a reader-submitted story. 

My diagnosis is: Migraine with aura.
2. My migraine attack frequency is: varies from 2 a month to 15 a month.
3. I was diagnosed in: 1952
4. My comorbid conditions include: tiredness
5. I take _no___ medications/supplements each day for prevention and _no___ medications/supplements to treat an acute attack
6. My first migraine attack was: in the winter of 1952
7. My most disabling migraine symptoms are: losing vision
8. My strangest migraine symptoms are: losing vision since it doesn’t happen often
9. My biggest migraine triggers are: sometimes stress, but that’s a toughie to figure out
10. I know a migraine attack is coming on when: when the dark spot occurs
11. The most frustrating part about having a migraine attack is: the time it takes to get over it
12. During a migraine attack, I worry most about: nothing. I can stop them.
13. When I think about migraine between attacks, I think: I hope I don’t get another one.
14. When I tell someone I have migraine, the response is usually: Go take care of it.
15. When someone tells me they have migraine, I think: I wonder what kind it is.
16. When I see commercials about migraine treatments, I think: Poor folks have to take them.
17. My best coping tools are: My own technique. Never get headaches anymore.
18. I find comfort in: that I know I’ll never have migraine pain again.
19. I get angry when people say: Take aspirin or Tylenol. If those stop a migraine–it’s a mild one
20. I like it when people say: You’re lucky you can avoid the pain.
21. Something kind someone can do for me during a migraine attack is: let me take 30 minutes to get rid of it.
22. The best thing(s) a doctor has ever said to me about migraine is: nothing we can do (years ago)
23. The hardest thing to accept about having migraine is: People don’t realize how bad they are if they’ve never had one.
24. Migraine has taught me: how to stop them. I am very fortunate.
25. The quotation, motto, mantra, or scripture that gets me through an attack is: Don’t have one.
26. If I could go back to the early days of my diagnosis, I would tell myself: You can stop these.
27. The people who support me most are: My wife and other migraineurs.
28. The thing I most wish people understood about migraine is: MWA can be stopped.
29. Migraine and Headache Awareness Month is important to me because: I love to read about it…more written then.
30. One more thing I’d like to say about life with migraine is: It was bad before I learned to stop them.

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.

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Possibilities for a Better Headache Preventive

Our options for headache preventives suck. Yeah, some work for some people and it is a matter of trial and error based on each person’s needs, but there aren’t any consistently effective drugs available. All in My Head author Paula Kamen shares this disconcerting information:

“…I heard a variety of doctors clearly make an assertion again about the inadequacy of the currently available preventives. ‘Interestingly, a majority of commonly used [preventives] have little evidence of efficacy. In contrast, almost all options have well documented adverse effects, often leading to a discontinuation of preventive therapy,’ read a summary in the program book leading to the presentation of Dr. David W. Dodick, the well-respected director of the Headache Program at the Mayo Clinic branch in Scottsdale, Arizona. This time the assertion was backed up by the citation of many studies, including a major federally sponsored one for 1999 done at Duke University.” (Page 285)

If current understandings and expectations of a new compound, called tonabersat, play out, we may get a preventive of our very own. Tonabersat is the first in a class of compounds called “gap junction blockers.” (“Gap junction blockers” refers to the overall class or type of compound, just like “antidepressants” refers to a group of different drugs.) Targeting a different type of brain action than other drugs that are used as preventives, gap junction blockers are thought to be a breakthrough for headache prevention.

Depending on how you look at it, there’s either a lot of promise or a lot of hype for tonabersat. Some of the soundbites include:

  • “Tonabersat is an extremely interesting compound with a novel and very specific mechanism of action which means it is likely to be effective in prophylaxis of migraine.” (According to a past president of the International Headache Society who is working with the clinical trials)
  • “Given the clear demonstration of clinical activity with tonabersat in previous migraine studies, we anticipate it showing real benefit.” (Said the CEO of Minster Pharmaceuticals, the company that bought the rights to tonabersat and will develop the drug)
  • Tonabersat “represent[s] the first major advance in the treatment of migraine since the introduction of Imigran [Imitrex in the US].” (From GlaxoSmithKline, who identified the initial compound and is expected to market the drug if it is approved)

I am wearily intrigued. A good headache preventive would be invaluable, but there are so many obstacles left that I can’t get excited yet. Trials are in the early stages. Results aren’t expected for a couple years and FDA approval won’t come until long after that. The drug may turn out to not be effective or may have unbearable side effects. Or it could work great and makes us all happy. Or be somewhere in between.

To learn more about the study, see the press release or the blurb in the Cambridge Evening News. For more about tonabersat, see Minster Phamaceuticals‘ product overview and company profile.