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Diagnosis of Migraine & Headache Types

Need help sorting migraine type

  • By OctoberLily

    Hello! I’m new to this forum, but not new to migraines.

    I’ll try to keep this brief and just give you enough information to hopefully help with my question! I’m a 46 year old female and I have suffered from migraines since I was about 30 years old. I have tracked down some of my triggers (most recently, I believe Propylene Glycol to be a huge issue!) and have suffered a few different types of migraines (TMJ and menstrual cycles are an issue), but the basic pattern has been fairly consistant and it doesn’t seem to fit any of the usual definitions.

    The day before the headache begins, I will have various aura symptoms such as patterns of light, dizziness, or a euphoric mood. The pain then starts, centered on one side, and is quite severe for 48 to 72 hours. It is accompanied by varying degrees of nausea, light sensitivity, sound sensitivity, cognitive fog, and fluctuating temperature.

    Here’s where it gets weird. I then get a break from the pain for anywhere from 6 hours to as many as 7 days (generally it’s about 2 to 3 days) during which I still have some of the aura symptoms and just a general sense that I am still in “migraine mode”, but I’m not in pain and fairly functional. Then the OTHER SIDE kicks in, and I do a full 48 to 72 hours of equally intense pain on the OTHER side of my head. Once that subsides (and I survive the postdome/hangover), I have completed a full migraine experience and should get a break until the next trigger.

    I have VERY rarely been able to avoid the second side kicking in. It seems once the cycle has started, there is no way to avoid the entire pattern. (I seriously feel like people who get migraines lasting “4 hours” aren’t really getting migraines! LOL)

    My doctors have continually said this isn’t possible, this must be a “rebound headache” or a “cluster headache” or something else, but nothing about my experience fits these diagnoses.

    Has anyone else had a similar experience? Any advice? I’m on Day 2 of the second side of a really severe one right now.

    Thank you and here’s hoping you are all pain free right now!

    Lily

    reply
  • By glassmind

    status migrainosus

    This may be what is happening.

    Do talk to your doctor.

    I hope you find effective therapy.

    reply
    • By OctoberLily

      Thank you! Sorry, for some reason this reply didn’t show up for me until now. I had read about status migrainosus and considered whether that might apply to me. The first few articles I read said the pain had to stay on a single side of the head to qualify, and since my headaches start on one side and then move to the other side, I wasn’t sure how that fit in. But with further research, I’ve found that there is some pattern variance amongst status migrainosus sufferers as far as one side/other side/both.

      I am so susceptible to side effects from medications, I have never tried taking anything prescription level (I have other issues such as Chronic Fatigue Syndrom, Fibromyalgia, and IBS). Right now I only use Regular Strength Tylenol (which, honestly, does only enough to keep me alive :p). In the past, I tried Ibuprofen for a while, but over time I was having serious health issues from that so had to go back to Tylenol. So, I’m not sure whether there’s much a doctor could do if I don’t want meds. I did have a brain MRI about a year ago (for other reasons) which was clear (except for possible small scarring from past migraines), so I know it’s not a brain tumor or anything.

      But it really would be nice just to have a clear understanding of what I’m dealing with.

      I really appreciate the input and support!!

      reply
    • By Nancy Harris Bonk Moderator

      Hi OctoberLily

      Thank you for sharing your journey with us and welcome to the Migraine.com discussion forum!!

      Only a qualified doctor can tell you what is going on. It may very well be different migraine attacks, some people have migraine pain every day.

      If we have more than four migraine attacks a month, it’s time to discussion migraine prevention with the doctor. The thing about taking medications is migraine disease, a genetic neurological disease, can go from episodic (14 or fewer days a month) migraine disease can turn into chronic (15 or more migraine days a month) migraine disease fairly quickly. We want to avoid that if possible.

      What you can do to help manage migraine disease is keep a detailed migraine diary for three months to see what triggers an attack and any patterns they have. Here is information on how to get you started: https://migraine.com/blog/keeping-migraine-diary-basics/.

      And glass mind is absoltuetly correct. It is important to see a doctor who is educated in migraine disease, preferable a doctor who board certified in headache medicine, which is different than being certified in neurology.

      I hope this helps!
      Please keep me posted on how you are doing!

      Nancy

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  • By glassmind

    If your doctor hasn’t heard of it, ask to see another doctor.

    reply