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Diagnosis of Migraine & Headache Types

chronic migraine with persistent aura or MOH??

  • By Autumn Sparrow

    The last few months I’ve been having 27 migraine days each. I typically have persistant aura but not like the last few months (visual & auditory hallucinations the whole gamut). I’ll be on day 7 and spend the day watching everything ripple like the ocean, melting together.

    I also have General dystonia which is a blessing in the sense that those meds are migraine preventatives. I also take depakote, verapamil and just started Botox. Multiple rounds of steroids.

    I fall into the group of people that shouldn’t take triptans. After multiple attempts to break them in ER & urgent care I begged my dr to let me try Maxalt again, Midrin, imitrex injections. Nothing breaks them. Max relief is 2 hours.

    During this time I’ve started getting ice picks nearly every afternoon

    They always come back and go on for 2-11 days. I haven’t had a break since 8/2.
    I’m terrified of MOH so I try to rotate my meds. I spend days going without in tears. Even ER seems like a waste- and my entire medical team seems to agree.

    Could this be MOH? I’m at the point where I’d stop all my meds as I’m in tears daily regardless. I just wonder about the persistent severe auras & the pain worsens throughout the day.

    I just lost my job & insurance due to being on medical leave. I’m so over this.

    Any thoughts?

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  • By Nancy Harris Bonk Moderator

    Hi Autumn Sparrow,

    I’m so sorry you are having such a difficult time right now, that really sounds trying. Let me see what information I can provide you that may be helpful.

    Unfortunately, it’s not uncommon to have more than one type of migraine and/or headache disorder. From your description, the shooting or ice pick pain, doesn’t sound like moh, but one never knows. It may very well be a another headache disorder. Have you had a chance to speak with your doctor about this? If not I would encourage you to do so. In the meantime, here is information on ice pick headache; https://migraine.com/blog/ice-pick-headaches/.

    I have a paragraph from the American Migraine Foundation that described moh: “The location, character, and severity of medication-overuse headache can vary among individuals, but most of the time occurs daily or nearly daily, and is usually present upon awakening.4 It improves transiently with analgesics and returns as the medication wears off. Other symptoms that may accompany the headaches are nausea, anxiety, irritability, asthenia, restlessness, difficulty concentrating, memory problems and depression.”

    Are you taking anything in addition to Maxalt, something over-the-counter perhaps? Pain medications, whether they are prescribed or over-the-counter can also create moh. Have you seen this information on moh; https://migraine.com/blog/help-how-can-i-not-overuse-migraine-medications/.

    I understand how hard it is to live with migraine and chronic pain. My life has dramatically changed in the last 20 years. I’ve recently started to see yet another migraine/headache expert and this time I am more hopeful. Have you been able to see a “true” migraine/headache expert rather than a general neurologist? If not, this may be something to think about – let me explain. A “true” migraine/headache expert is board certified in headache medicine which is different from being certified in neurology. It’s not that neurologists aren’t fine doctor, it’s just they have a hard time being experts in one area because they treat so many different conditions such as multiple sclerosis, stroke, epilepsy, Parkinson’s and others. Migraine/headache experts treat one condition all day, every day – migraine and headache. When you get a moment, take a look at this information on how these doctors are different and how to find one; http://migraine.com/blog/how-are-migraine-specialists-different/ and https://migraine.com/blog/really-find-headache-specialist/.

    I hope this helps and keeps us posted on how you are doing.

    Nancy

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  • By Autumn Sparrow

    Hi Nancy,

    I’m starting to think it’s either clusters overlapping with migraines or something else. As it doesn’t seem to fit the MOH profile as it doesn’t getter better with meds just dampened. My neurologist and I have talked about it my dystonia has been getting worse as well. He had an MRI done that he, my Botox Neuro & radiologist disagree upon… Lesions from migraines, it’s just an aura, to some troubling things that can’t be determined as they can’t get a read of my basal ganglia. We’re redoing it in a few months as I just lost my health insurance and am fighting with my old employer to get the documentation I need to get a policy through Covered California.

    I take Aleve or Tylenol 4 days a month (2 each) when I need to rotate something else in, although they don’t touch the pain so I’m probably going to stop. I also take fioricet 4 days a month and imitrex injections on 2 & Midrin on 4-5 days. I never take the same med 2 days in a row. I don’t treat the pain for 40-50% of my headache days.

    I take Nucyenta ER, klonapin, Baclofen & gabapentin& Effexor for the pain & spasms related to my dystonia- my teams baffled that this doesn’t dull the headache pain all are at preventative levels. The klonapin helps me deal a little better with the pain when I can’t treat at least, if I’m taking fioricet I don’t take it.

    Unfortunately I need a regular Neuro due to the dystonia which can be a migraine trigger. It affects my neck, eyes, back, stomach, lungs and all limbs. On bad days I can’t walk I just was able to use a paint brush for the 1st time in a year, as an artist that’s huge!

    I’ve looked in the area and none of the headache specialists have the credentials I require. I have trouble traveling so anything out of the immediate area isn’t doable.

    The good news is I’m no longer tied to the Bay Area so once I get resettled I may be able to find someone who has an understanding of both disorders.

    For now I’m sticking with the guy that figured out what 17 other doctors (including Stanford) couldn’t figure out last year. I’m partial as we’ve been through a lot together.

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