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nine months and counting with migraine

i have had a migraine for nine months and three days so far with no relief. I have had migraines since age five and I am now 39 years old. I have a new headache specialist who listens and doesn't just throw pills at me, but even with more than 20 prescriptions and one botox treatment....nothing is working.i have headache symptoms everyday, some days are better than others but everyday I have a migraine.
I know a lot about what triggers my migraines but I have no idea about why this migraine wants to stick around.
if anyone has any new ideas, please let me know because I am out of options

  1. Hi melindas,

    Thank you for your post. I'm sorry to hear you are having such a difficult time right now. Let's see what information I can give you that may help.

    Something to keep in mind when we start new medications is that it can take up to 90 days before we see a reduction in our migraine frequency and severity. Also during this time potential side effects can lessen as our body adjusts to the new medication. The thing is if we don't give each medication a fair trial, we'll never know which one would have worked for us. Does that make sense?

    I'm happy to hear you have a compassionate doctor, it's so important to have a team that is well educated in migraine and headache disorders. Is he board certified in headache medicine by any chance? This is different than being board certified in neurology.

    You may want to talk to your doctor about a steroid dose pack to break this nasty migraine cycle - this works well for many of us. Another option for intractable (not responding to medications) migraine are IV infusions. When I have a nasty cycle that won't break, my doctor gives me an infusion of magnesium sulfate, fluids and a few shots of pain medication. This article has some alternatives you may want to discuss with your doctor; https://migraine.com/blog/alternatives-to-the-er/.

    Is there any chance you are taking something every day, or nearly every day to relieve this pain? One problem we can unintentionally get ourselves into is called medication overuse headache, or moh. MOh, which was formerly called rebound, can occur if we take pain relievers and/or migraine medications, whether they are over-the-counter or prescription, more than two to three days a week. If we are in an moh cycle our attacks will be more difficult to treat and we can end up in a daily cycle of pain. I've been there and it's not pleasant, but we can combat it. Here is information on how to avoid this; https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/.

    I hope this helps, please keep me posted,
    Nancy

    1. I appreciate the post, but I have tried steroid packs, botox and of course many meds from many categories. I don't have the luxury of waiting 90 days for a med to work, because most of them I only have to take once and my migraine is much worse not much better. I don't want to take anything that makes it worse, that isn't what I am after. I don't take anything daily for the migraine, so I know I am not in a rebound cycle. I try not to take anything until I just can't function at all. I am just not sure what is causing this episode but mri, spinal tap, blood tests, xrays and countless other tests all haven't found anything. I find myself searching for rare or odd diseases that might explain it. I also am thinking of moving to try another climate because maybe that would help.

      1. Hi melindas,

        It's not about having the luxury to wait 90 days or so, rather letting the medication work. Rarely do any medications, for prevention, work immediately.

        Migraine is thought to be a genetic neurological disorder - in where attacks are triggered by certain things like certain foods, interrupted sleeping patterns, skipping meals, smoking, alcohol, changes in the weather, fluctuating hormones and other things.

        Do you know the exact day this migraine/headache started? I ask because there is a headache disorder called New Daily Persistent Headache, NDPH, that can be difficult to treat and often times starts when we have been ill. Here is information on this; https://migraine.com/blog/new-daily-persistent-headache/.

        Nancy

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