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Escalating treatment options with your neurologist

Hi everyone,

I've had migraine my whole life (age 3+) and my two most reliable triggers are fluorescent/flickering light, and dropping barometric pressure (thunderstorms.). We have had a storm nearly every day for the past 3 weeks and I have had a migraine all but 3 days of the past 3 weeks.

I'm only working part-time at the moment and mostly from home, but I'm still behind in my work and feeling stressed about it, which of course is no good for the migraine. Today I woke up at 7:00 am with a migraine and took two Dexedrine to try and launch myself out of bed because I can't afford to lose the time. When I woke up at 2:30 pm it was obvious that strategy didn't work. I took an Amerge, made it to the office to pick up some files and then managed to drive home again while my mkigraine symptoms progressed. I don't feel up to working tonight and usually try to go to bed hoping that will help the migraine go away, rather than powering through it... but I'm concerned that it will be back again tomorrow.

I know about MOH and am doing my best to avoid it, but don't really have a plan for what to take when I get persistent migraines. I've tried the preventatives and am on Botox, which helps, and have Amerge, Zomig, Tramadol and Percoset as well as injectable Gravol for attacks.

I have an appointment later this month with my neurologist and I feel like we have to go after this more aggressively because I literally can't afford to live on disability (it would be through the government, I don't have any employer benefits) and am alone. I'm in Canada so we don't have migraine clinics like I've read about in the US, and I feel like my neurologist's response will be "you're managing to work... What more do you want?" But I am desperate. I'd do anything - nerve surgery or whatever - to get some relief. I find that massage and chiropractic help somewhat but don't have any coverage, and the stress of paying for them almost cancels out the relief I get.

How can I make my neurologist understand that these are at an intolerable level? What should I be asking for? Please help!

  1. Hi Delaney,

    Thank you for your comments and questions. Life with migraine shouldn't be about just getting through the day. It may be time to use this phrase - my 'quality of life' is suffering and I don't feel as if I have a life. Here is a good article on questions to ask your doctor about treatment; https://migraine.com/blog/5-guidelines-for-questioning-your-doctors-about-migraine-treatments/. Have you tried any dietary supplements such as magnesium, C0 enzyme Q10 and/or riboflavin? There is evidence that these can help reduce migraine frequency and severity. When you get a moment take a look at this information; https://migraine.com/migraine-treatment/natural-remedies/.

    I understand trying to avoid moh having been through it myself. The thing about moh is we'll continue to have daily chronic head pain if we are in an moh cycle, which can occur if we take pain relievers and/or migraine medications more than two to three days a week. If we are susceptible, as I am, two days a week is my maximum. Not to beat a dead horse, but if you haven't seen this information on moh, take a look when you get a chance; https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/.

    Botox works wonders for some people, but is not a "magic pill" if you will. Botox is a prevention medication which means will still need to be vigilant about our migraine triggers. Triggers can be tricky because they can change over time and tend to be stackable or cumulative. Do you happen to know what your triggers are? Triggers can include but are not limited to certain foods, dehydration, irregular sleeping patterns, changes in the barometric pressure, smoking, alcohol, fluctuating hormones and many others. One of the best ways to identify our triggers is to keep a detailed migraine diary for a few months. If you haven't seen this information on triggers, take a look when you get a chance; https://migraine.com/blog/migraine-management-essential-trigger-management/ and how to keep a migraine diary; https://migraine.com/blog/keeping-migraine-diary-basics/.

    There is an organization in Canada you may find helpful, Help for Headaches - http://www.headache-help.org/index.php. I'm not endorsing this group as I'm not real familiar with them.

    Let me know how you are doing,
    Nancy

    1. We do have headache clinics in Canada - one I'm part of is champ based in Calgary, AB. Not sure about other areas.

      I understand about the working situation, I'm there too. Single, own a house, no employment benefits. I would just be honest with your boss that things are a little tough for you right now and once you work through it you will make up the time. It (so far) has worked for my boss and I; beginning of the month I literally had three weeks of 7-9 out of 10 pain that would not go away because of the daily thunderstorms. I worked 4 hours in 3 weeks. This week was better so I have been able to add some extra hours. I believe it should all work out in the end. Good luck!

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