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!!

Mama,

Hang in there... Call your husband's PCP and ask to have your husband scheduled for a lab test of his 25(OH)D serum concentration asap.  This is the serum level metabolite of vitamin D3 that's used to measure its status.  The odds are high he is vitamin D3 deficient and this deficiency is contributing to his cluster headaches/HC.

The normal reference range for this lab test is 32 to 100 ng/mL.  Results between 20 and 32 ng/mL are considered vitamin D3 insufficient.  Less than 20 ng/mL are vitamin D3 deficient.

If your husband's 25(OH)D serum concentration is less than 32 ng/mL, talk to his PCP about starting the anti-inflammatory regimen with 10,000 IU/day or more vitamin D3. 

You can read about the vitamin and mineral supplements used in this regimen and what other CH'ers have reported after starting it, at the following two links:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Take care and please keep us posted.

V/R, Batch

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 START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. 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?

Yes, he is working with one. He may get discharged tomorrow..with no answers. This scares me because we will be back in the cycle again. The narcotics dilated and demerol DO help him, those are the only things that touch the pain when the injection is not available. We only get 6 injections at one time from our insurance, that lasts about 3 days. So, then he goes to the ER, gets narcotic, which actually does help him. He has tried the o2 on various settings, none which seem to help. The location of the pain makes the neuro think it is hemacrania, which mimics cluster but with migraine symptoms such as photophobia, nausea, etc. THe location of my husbands pain is mostly in the back of the neck, shooting UP to the eye, and then down the throat. His throat is often extrememly sore on the headache side.His bp is very low which is why verampamil is so low of a dose. The indomethicin seems to help limit the attacks to ONE bad one a day, versus day long attacks, which is good.

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....
It's is crucial to get that all important diagnosis as stated by the others as you can't really proceed properly without it.
It seems that there are cluster symptoms here and also migraine which is possible to be a combination of the two and his symptoms of tearing eye,running nose and the eye pain are all CH symptoms. It is also very common to have CH worsen in the winter months with constant "Shadowing" which may explain the non stop headache and getting the bad attacks in periods and Bob may be correct by saying that there may be something else going on here too.

As stated we can not give that diagnosis so having a headache specialist that has "Experience" with CH  and other headache disorders is always best. The hemacrania is also a posibility too.....  Batch has mentioned the D3 regimen and is the man responsible for it's existence  and that can be started right away with the "OK" from his doctor and get the the 25 ohd lab test asap. This treatment is helping so many CHers become pain free and there is evidence that it may help migraine too.

I was chronic for about 37 years and the D3 ended my clusters 110 days ago. It is a regimen that has other health benefits as well and can be taken year round regardless of CH for about 20 cents a day and may stop a CH cycle before it even starts. I wish you both the very best and hope that pain free days are soon to come.....Johnny :)

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.