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Migraineur misdiagnosed as MOH/drug seeker during CH


PainInTheEye
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I just thought I would post my experience. I have had migraines for years and then a few years ago started getting "different" headaches around the time changes that would not stay gone. Imitrex worked for 2 to 4 hours and the headache always came back and this lasted two to three months. I went to the ER wondering if something else was going on, and as tempermental and frustrated I was I had doctors yell at me and list me as a drug seeker on my medical record. My GP refuted this, but once I figured out that I have both migraines and CH, I wondered how many others have been through this. So, for those with migraine that aren't sure, the list of differences are below (at least what I noticed in my case).

Abortives: Imitrex works for 12+ hrs with migraine. DHE longer. For CH, Imitrex works for 2 to 4 hours even with a small dose. DHE dies nothing. A large dose of aspirin can abort a refractory migraine, not CH. The migraine cocktail including a potent opioid, Ativan, and Benadryl has worked for either but knocks me out for a full day and younger docs think Toradol is the magic cure all. Prednisone has been the only effective abortive consistentky for CH for me.

Preventives: Been on the full list. Antidepressebts make the agitation worse for me. I have yet to find a preventive that works for either type regarding less freqency, though the migraines are easier to abort.

Pain features: Migraine: Sensitive to light/sound, nausea, pain in the temple(s), just want to lie down. CH: Light and sound piss me off, pain in the orbital area, temple, and sinus pressure, cannot lie down, and symptoms feeling like the fight response switch has been flipped on full force during each attack. A migraine seems like a walk in the park compared to CH.

Warning signs: Migraine: Aura and yawning with 6 to 12 hours before the pain. CH: Insomnia within a few days before the pain starts, severe panic attacks/agitation before the pain starts.

A note on MOH: I've been a migraine sufferer for 20+ years. A withdrawal headache is usually frontal in nature, and I frankly think that diagnosis is a catch all excuse for intractable headaches because even if a patient limits themselves to well under the recommended limits, this diagnosis will still be made, often by inexperienced, non-headache specialists. My headache specialist agrees that MOH is over diagnosed.

I keep a headache diary and if I had not done so for several years, I would have assumed these were really bad migraines twice a year. It was my husband who figured out the agitation (which frightened me much more than the pain) was a hallmark of CH. Since learning more, every symptom fits. The headache diary convinced my doctor that I do, in fact, have both types of primary headache.

Hopefully, my list will highlight the differences for anyone who is unsure. These are not all the differences I am sure, but it highlights the differences in how meds works, the difference in pain features, and my personal warning signs. A headache diary is your best friend.

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Pain', you want oxygen for aborting your CH attacks.  Read about it here: https://clusterbusters.org/oxygen-information/   This is going to be your best friend.  Doesn't help migraine (for most people), but it's practically a "wonder drug" for CH, once you get your system and your technique right.

 

Prednisone as an abortive?  You do not want to be doing that.

 

The vitamin D3 regimen has helped a lot of people with CH, and also seems to be helpful for migraine.  https://clusterbusters.org/forums/topic/1308-d3-regimen/

 

An energy shot (such as 5-Hour Energy) or other energy beverage drunk at the onset of an attack proves very helpful for many.

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  • 3 weeks later...

Pain

I am one of the lucky few that has migraines with cluster events during the headache. It is a horrible existence to live with and I am sorry to hear you are suffering with them. Listen to these guys on this site they can change your life. They have saved my life.

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