Hello. I am a supporter, but I am asking questions for my husband, he is in the hospital.
He was dx with Cluster headaches years ago, but he would have a 2 week cycle, and remit for years. He has only had three cycles in his life. But migraines in between occasionally. Starting before christmas he started having more and more headaches, and then BOOM the first week in jan it hit hard. Severe, on the floor, crying, eye tearing, nose running, headaches. He had imitrex 100mg which did work. Then building to those didnt work, he was going to the ER frequently to get demerol, dilauted. Those are the only narcotics that work for him. Okay, now his neurologist thinks he has hemacrania continua. The headache is always there it NEVER EVER goes away. But usually at night, but sometimes in the day he gets a bad attack. Stress triggers it. He cannot lie flat down. He hasnt slept in months. They have done all tests. He is on verampil, 80mg 3x day. Indomethin, 75mg 3x day, imitrex as needed 100mg, and sumavel shots 6mg as needed. Now the shots are not even working for him. The dr admitted him yesterday. He is on a DHE regime, which does seem to help him somewhat. Lidocaine shots in the back of the neck seem to help him too sometimes. This is something new like he has never had. COuld this NOT be cluster, is the dr right about hemacrania? O2 DOES not work for my husband. I am scared, he said he was suicidal. I am just worried he wont be able to work anymore. Help!!

Hi Mama

A few comments from your post.

For CH narcotics are rarely a good idea as they hardly touch the pain, take too long to take effect and result in potential addiction issues, which isn't a good combination.

Imitrex 100mg will be the tablet form of Imitrex which although it works great for migraine, for a CH it takes too long to take effect at 20 minutes or so. What does work a lot better is the injection form. However what a lot of people here prefer is to use oxygen at a high flow rate (15lpm with higher being better) and a non-rebreather mast. Using 25lpm I kill off my CHs in 5 minutes. Read up more at Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or . Often when people say that it doesn't work it turns out that they have used too low a flow rate, the wrong mask or something else.

Verapamil is normally an effective preventive, however 240mg a day is a pretty low dose for people with CH as most need 360-480mg and some go as high as 1000mg to get relief. However other medical factors, e.g. low blood pressure, may be what is limiting the dose.

However one thing we can't do is to confirm or give a diagnosis. This is where you need to work with a headache specialist. Are you working with one?

When you have a history of standard Cluster meds either not working OR working for a short time and then stopping this can be a sign that the issue is NOT Cluster.

You've asked an interesting question along these lines.

Only solution is finding a serious headache specialist who is willing to explore the alternatives and try and identify the real issues.

If you want to explore this route with his doc, print this article and give to the doc and press for some kind of a serious response.
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Link to: cluster-LIKE headache.


Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

Mama - I am casting my vote for the D3 regimen as well. 23+ years, first as an episodic, then as a chronic. Hospitalized twice for the IV DHE-45 treatment (hospitals are anti-fun and really expensive). Started the vitamin D3 regimen a little less than a year ago. It took me almost 2 months to reach a therapeutic serum 25(OH)D level, and I haven't looked back. No attacks, only an occasional shadow - which I even hesitate to call a shadow, because it's so much less than that.

Even if your DH doesn't have cluster headaches, this regimen can only benefit his overall health. Get him to buy into it. My life has been changed for the better - hopefully forever.