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Losing Hope

I’ve been in status migrainosus for 11 months. I’ve been seeing a headache specialist for 10 months with infusions, trigger point injections, and Botox. I’ve spent two weeks inpatient on two different occasions in Chicago. One of those stays, I developed Depakote induced encephalopathy. We’ve done nerve blocks, chiropractic, accupuncture, dry needling. I’ve been taking Emgality for three months. We’ve done IV DHE, steroids, and magnesium as well. I’m a nurse and I haven’t been able to work since January. I can’t even drive most of the time. I’m so discouraged with everything right now. Ubrelvy and other abortive meds don’t phase it either. It just seems like it’s never going to get better.

  1. Hi @danican87,

    Thank you for reaching out and sharing your story with us. I understand how frustrating and difficult it is to live with daily pain, I'm sorry you are going through this right now. It may feel hopeless, but there really are option out there!

    I hope you don't mind if I ask a few questions to help point you in the right direction? By any chance are you taking something, such as over-the-counter (or even prescription) pain relievers and/or migraine medications, every day, or near daily to help relieve this pain? We can unwittingly get ourselves into a rebound cycle if we take these medications more than two to three days a week. If we get into rebound (we just want the pain to stop!) our migraine attacks may be more difficult to treat and we can end up in a pattern of daily pain. Rebound can happen with caffeine, as I found out! There is a small set of people with migraine disease who can only tolerate a bit of daily caffeine. For me, it's one cup of coffee a day. If I do more than that on consecutive days, I'll throw myself into a rebound pattern.

    Triggers? Have you been able to identify any triggers that may this pain worse? If you haven't kept a detailed diary recently, this may be something to consider. Some triggers we can avoid, while others such as changes in the barometric pressure and fluctuating hormones, are unavoidable.

    How about a sleep study? Many of us living with migraine disease also have sleep issues, and not only sleep apnea. I have restless leg and periodic limb movement disorder that contributed to my daily head pain. These are being treated, so my morning pain is better.

    Is your current doctor certified in headache medicine, rather than a general neurologist? While general neurologists may be fine doctors, it's hard for them to be experts in one area because they treat so many conditions such as stroke, epilepsy, multiple sclerosis, Parkinson's and others. Even if this doctor is a true expert, I wonder if it's time to get another set of eyes on you? I'm currently seeing my 6th true expert (due to relocations and not great matches) in the 24 years I've been dealing with chronic head and neck pain in addition to migraine disease.

    I found this study I hope is helpful and has other options for you; https://ihs-headache.org/wp-content/uploads/2020/06/Couch.pdf and here is look at an inpatient management program at the Jefferson for some ideas; https://jdc.jefferson.edu/cgi/viewcontent.cgi?article=1100&context=neurologyfp.

    There are lots of options available, really! Over 100 medications, supplements, devices and complementary therapies, can be used to treat migraine disease and new treatments on the horizon.

    Are you taking daily medication (s) for migraine prevention? I see you mentioned you've tried Botox, how many rounds did you give it? It can take three, four, or even more rounds before we see improvement- I had four rounds before I saw a difference.

    As frustrating as it is, it can take up to 90 days, at the therapeutic dose, before we see an improvement in our attack frequency and severity. During this time potential side effects may lessen. I really wish there was something we could take and make it all go away, but that's not available right now. Migraine is a genetic, neurological disease that we manage best we can, and that in itself is frustrating.

    I'll stop now, as I gave you a lot of information. Please let me know what you think,
    Nancy Harris Bonk, Patient Advocate/Moderator

    1. The triggers I have identified are position changes such as bending at the waist and weather. Caffeine or tyramine don’t seem to make a difference. I spent two weeks on the Diamond Headache Unit in Chicago on two separate occasions as well as seeing my local headache specialist. I saw an ENT today and they’re obtaining a PA for a sleep study. I don’t take abortives or rescue meds frequently. I am on Depakote, Zonegran, Cymbalta, Aldactone, and Emgality as preventatives. Then I have Ubrelvy, IM Benadryl, and IM Toradol. I went through 6 days of DHE in Chicago both times. I’ve had to same headache every single day, with varying severity, since last December. Nothing breaks it.

  2. HI @danican87,

    It's so frustrating to be in daily pain when nothing seems to help. I know you've seen a number of doctors, but maybe another set of eyes?

    Any chance you remember the day this head pain started? New Daily Persistent Headache, NDPH, is often characterized by knowing the exact day the pain started, typically after an illness. Here is information on this type of headache disorder; https://migraine.com/blog/headache-that-never-ends/. There are a few other headache types mentioned in this article that may be a good conversation starter with your doctor.

    I get it, as I've been down the unending head pain journey. I wish I could make it go away for you.

    I'm here for you.
    Nancy Harris Bonk, Patient Advocate/Moderator

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