Keeping up with the ketogenic diet and coordinating a new treatment (more on that soon) are taking all my energy right now. But I wanted to share my response to an email from someone who asked what my migraine attacks were like before I started DAO and what other migraine treatments I have tried. The list is too long to compile; instead, I summarized the migraine treatments that have helped me since finding the first somewhat effective one in January 2010. It’s an interesting snapshot.
I’ve had a gradual lessening of the pain since adding various treatments over the last six years. Before that, the pain rarely dropped below a 7 and regularly reached an 8-9. I also had a handful of attacks with level 10 pain, though I am very reluctant to rate my pain as a 10.
January 2010: Began using the NuvaRing continuously. Didn’t affect my baseline pain levels, but stopped the level 10 pain that came with menstrually associated migraine attacks.
November 2010: Moved to Arizona from Boston (weather was a major trigger for me). Made the migraine attacks a little more manageable, but I can’t quantify the improvement. The biggest part is that it freed up some of my energy to began researching and trying different treatments.
January 2012: Began taking about 700 mg of magnesium a day. After that, the pain ranged from 4-7 and occasionally got higher than 7 (maybe several times a month). I ultimately pushed the dose to about 1,000 mg a day.
August 2012: Began taking 12 mg of cyproheptadine. Pain ranged from 4-6 and hit a 7 an average of three times a month.
January 2014: Began DAO (diamine oxidase) in conjunction with a heavily restricted diet. My pain typically ranged from 2-4, but hit a 5 at times. This is when triptans (Amerge) were first effective for me, so I was finally able to abort migraine attacks before they got bad.
March 2015: I once again began getting migraine attacks every time I ate. The pain is usually 2-4. It sometimes hits a 5, but doesn’t get above that. Amerge is not longer a reliable acute medication. Fatigue and cognitive dysfunction are now far more disabling for me than the pain.
January 2016: Began a ketogenic diet. In the last month, I’ve been able to eat 250 calories without always triggering an attack. I typically still have at least one attack a day. (In addition to eating still triggering some attacks, I am much more sensitive to other environmental triggers and can’t go out in public without having an attack.) Amerge helps inconsistently. My pain ranges from 2-4. I can’t remember the last time it was a 5. The cognitive dysfunction is a lot better, but the fatigue is still disabling.
(I followed up with another email clarifying that I have particularly intractable chronic migraine and that this man’s wife will likely find an effective migraine treatment far more quickly than I did.)
After almost 4 years of suffering what was diagnosed as chronic migraine, I pray I have found my answer! I have tried pretty much everything except Cefaly and Spring TMS. In April after a runaround evasion from my neuro when I requested a second round of Botox, I decided to try a different neurologist. This one prescribed beta blockers which I remember vaguely discussing with neuro #1 but don’t recall why he didn’t recommend them. What a difference in the 1st month! 30% less headaches but neuro #2 still felt I was using too many triptans and at second visit upped dosage by 50% and added 880mg of naproxen. I have been migraine free for an unprescedented 9 days in a row now! The true test for me is to see if this will last for at least 90 days before I can claim no longer to be chronic. Because migraine begets migraine, I pray that this is my answer and that demon migraine has been permanently foiled.
Hi, I found your information useful. I have been taking naratriptan for a few years now for my migraine attacks. However, my attacks are worse during my menstual cycle and i rarely find anything will help to reduce the pain. Occasionally if I take something soon enough I can reduce the pain which ranges from a 4 – a 9 (like you I don’t like to categorise my pain in a 10 as I do survive and live to tell the tale). Do you have any experience of menstual migraine and what might work?
Hi Kerrie. Could you please explain to me what you mean by “attacks”. You reference having at least one attack a day. Does this mean you get a migraine and are able to abort it with medicine? My migraines are always daily, but my spikes in pain that I would call “attacks” are hours to weeks long. I’ve seen you discuss it before, just never got around to asking for clarification. Thanks for sharing what has worked for you. I hope you find something that allows you to eat without suffering.
Hope, great question. I use “migraine attacks” to mean what most people call “migraines.” It’s what a lot of migraine writers do to avoid the confusion between migraine (the underlying illness) and migraines (individual episodes of migraine attacks). Here’s a more detailed explanation I wrote: https://migraine.com/blog/migraine-migraines/ It also helps denote the difference between when people call bad headaches migraines and true migraine attacks.
My migraine attacks were constant for years. (I now know this happened because every time I ate, it would trigger a new attack on top of the one I already had.) I would call them all attacks, but some stretches were more severe than others. In those days, I was never able to abort one, so that part doesn’t apply to me.
Take care,
Kerrie
Thank you for sharing this. It helps to see what others have tried and provide some ideas for what to try next. Even though it sucks it’s also comforting to know I’m not alone in trying, failing and trying again.
If you don’t have a list of treatments that you have tried, how do you keep track of it? I’m sorry the keto diet didn’t work for you.
Great question, Becky. I have a pretty good memory for this kind of thing and can always look it up through my medical records or the blog. My last two headache specialists have had online access to my medical record. I eventually write about everything I try, so I can always do a search. It would definitely be easier to have a master list. I recently filled a prescription for a drug I’d already tried and forgot the name of. And I was sure I’d tried a particular anticonvulsant that caused suicidal ideation, but discovered a different drug was the culprit.
Take care,
Kerrie