My husband has been a cluster headache sufferer for over 20 years.  we have been married for 10 years.  He normally has about a 3-5 month cycle once a year.  Normally they are manageable, 3-4 hits a day, pain level 3-6, 10-15 minutes each, with an occasional bad one.

This cycle started about 2 weeks ago in the normal fasion,  but this last week he has been hit with multiple level 10+ that last for 2-3 HOURS, then lingering pain after from the severity of the pain.

Help us try to figure out, why this cycle is so bad and what can we do to bring it back in line with normal. 

We have not made any major changes.  He takes a series of Verapimil when he's in cycle which usually keeps the pain level manageable. 

In the past he's tried O2, kudzu, that pepper nose spray, imitrex, red bull regimin, and more.  all have little or no effect this time.

His headaches usually come after eating or at sleep onset.   When in cycle, of course he avoids MSG, alcohol, chocolate, nitrites and all the known triggers.

Please help me help him.  I made an appt with our GP tomorrow to check some blood levels like D and other things to see if there might be something causing this severe pain level.

Im so worried.  He usually handles the pain very well, but this like nothing we have ever seen before.

thank you.....please give me all your suggestions
:-/

Oh MinxKitten, so sorry that your husband is having such a rough time! And I know what you are going through.

I got involved in my husband's condition this summer because he has had the worst cycle ever. What I have learned is that cluster headaches can really change their pattern - time of year, intensity, duration, frequency, everything. Before dh's cycles were extremely predictable but this summer has walloped that. This summer he had some super long headaches that caused him to crawl around crying and vomit with the pain  :'( . I couldn't stand it. My theory is that changing allergy patterns are involved, but I have no way of knowing whether that is true.

It is a great thing that you are involved. My experience has been that dh has not been able to be proactive about his medical care when he is in cycle - too drained by managing the pain and coping.


Quote:

In the past he's tried O2, kudzu, that pepper nose spray, imitrex, red bull regimin, and more.  all have little or no effect this time.

This is very important. Many people come to this forum having "tried" O2, but it turns out they didn't do it right. The bare minimum is 15 lpm with a non-rebreather mask. Better is following the directions at this link to the letter:
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Did your husband try O2 this way? After my husband's most horrible night, I became determined to get him O2 the next day and I somehow pulled it off by begging a lot. It has been a lifesaver for him...I don't know how he would have survived this cycle without it.
more good info about O2 here:
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Quote:

I made an appt with our GP tomorrow to check some blood levels like D and other things to see if there might be something causing this severe pain level.

That is so great that you are getting his D level checked. In the meantime, I would start the regimen including the loading schedule. Scroll down here to see what you need to buy at Costco:
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The reason I encourage this is that some people start responding in DAYS. My husband took longer, but in 2 weeks, my husband went from 2-3 hits per day, to 1 hit per day. After 4 weeks, my husband is getting more pain-free nights than not. The regimen has a great success rate and if it works then the person probably needs it anyway. Don't wait for the test results to start - consider them a convenient baseline...you can tweak the dosing once you get the results but if he hasn't been supplementing this is a safe option for him even without test results.

Stay strong. He is needs you even if he doesn't show it. My husband (secretly) likes me to bully him into doing the stuff that MUST be done (get O2 prescription, take the supplements), but he doesn't like talking about the headaches unless he initiates it.

Given your location I think you should be able to find a head ache specialist easily.
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LOCATING HEADACHE SPECIALIST

1. Yellow Pages phone book: look for "Headache Clinics" in the M.D. section and look under "neurologist" where some docs will list speciality areas of practice.

2.  Call your hospital/medical center. They often have an office to assist in finding a physician. You may have to ask for the social worker/patient advocate.

3. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Look for "Physician Finder" search box. They will send a list of M.D.s for your state.I suggest using this source for several reasons: first, we have read several messages from people who, even seeing neurologists, are unhappy with the quality of care and ATTITUDES they have encountered; second, the clinical director of the Jefferson (Philadelphia) Headache Clinic said, in late 1999, that upwards of 40%+ of U.S. doctors have poor training in treating headache and/or hold attitudes about headache ("hysterical female disorder") which block them from sympathetic and effective work with the patient; third, it's necessary to find a doctor who has experience, skill, and a set of attitudes which give hope of success. This is the best method I know of to find such a physician.

5. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE NEW certification program for "Headache Medicine" by the United Council for Neurologic Subspecialties, an independent, non-profit, professional medical organization.
        Since this is a new program, the initial listing is limited and so it should be checked each time you have an interest in locating a headache doctor.
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With these kinds of changes it would be good to work with a doc skilled in headache. Most docs, even neurologists, have meager education/experience with Cluster.

Major changes in one's pattern calls for a reworking of the treatment program you're using, especially around dosing, frequency, etc.

Print the PDF file, below. It's good for your informatioln and is a good "tool" to guide discussions with the doc.

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Hi Jacq

don't worry everything will be ok. I spoke to RTD early this morning and we reviewed medical protocol. he knows what to talk with the doctor about and am very confident he will improve.

hope you were able to enjoy the halibut I brought you guys from Alaska. say hi to your mom for me.

-Gregg

Hi Minx, and welcome.
You say your husband has tried O2 and imitrex.  Both of these rely on being taken the right way.

O2 should be prescribed at a minimum of 15 litres per minute ( 25 is better) with a non re-breather mask. If you get either of those things wrong it won't work. But when you get it right, and it does work, it's an absolute life saver.

How did he take imitrex? It comes in tablet form, nasal spray and auto injections. The tablets take far too long to get into the system and for that reason are next to useless for CH. The nasal spray is a little better, but the injections are fantastic and will abort the worst CH in 5 -10 minutes.

I use the O2 when I'm at home and the injections when I'm out and can't get to the O2. They are very easy to use - just a button to press, and don't hurt much. Compared to CH they are a walk in the park.

Get some energy drinks, like redbull. At the very first sign of an attack (don't wait till it ramps up ) drink it down really fast in a few gulps. It's the combination of caffeine and taurine in a sudden hit that does the trick, so any drink with those ingredients will do.Redbull, monster and rockstar are faves. It doesn't work for every one but many people have some relief from it.

Check out these boards for posts by Batch about vitamin D3, which has been successful for 80% of those who try it.

As for the change in pattern I'm sorry to say thats pretty normal. Just when you think you know what to expect it will change. The unpredictability is the ONLY thing you can bank on with CH.  High levels of pain for up to 3 hours is pretty common for many of us.

I do hope your husbands cycle can be controlled with the correct meds, and comes to an end soon. Keep us updated, and keep coming back here. We're always here to listen.

Best wishes
Maz

What everyone has said.. but another thing.. MELATONIN.. take it at night (at least 10mg - I've been up to 20mg at times). It almost completely stopped my night hits, but took a couple of weeks to start working -- I gave up twice, but the third time I stuck to it and have been on it for years.. It gets you thru the REM sleep where the CH hits..

And go to the link posted for the D3 regimen.. Get on it.. It's working for about 80% of us.  I've been chronic since 97 and since getting on it . have not been hit since Oct 21st..

And as everyone says.. If you do the O2 - do it RIGHT.. It won't work if done wrong.

Wishing you hubby some PF time soon.  :-*

This sounds so much like my husband .He has not been on Verapimil. His first in hospital stay was last week and the doctor that saw him in hospital was going to send him home with a prescription for it but decided against it when he looked at all his other meds. My husband to has been at 20 years and these are different worse .5-8 a day .The eating triggering headaches is just like my husband he is scared to eat and his headaches are lingering there all the time like a demon in the corner.I wish so much I had answers for your husband and for mine. I hope someone will help them.He has not ever done anything like a red bull regimen. What is that and why does that work?

Not sure exactly how the redbull works, but it must act like a vasoconstricter, as that is what is needed for CH.

CH is caused by a dilated blood vessel which presses on the trigeminal nerve. Imitrex and oxygen (with a high flow and the correct mask) are both vasoconstricters. They will shrink the blood vessel back to its normal size, thus taking pressure off the nerve. Perhaps a sudden dose of the caffiene/taurine mixture will also have a narrowing or constricting effect on the blood vessels.

It doesn't work for every one - it didn't for me, but there has been a lot of success with it for others, so it must be worth a try, especially as it's so easy to get. As I said before, use it early in the attack and drink it fast.  Hope it helps.

maz wrote on Sep 19^th, 2014 at 10:08am:

Not sure exactly how the redbull works, but it must act like a vasoconstricter, as that is what is needed for CH.

The two key ingredients are caffeine, which is a vasoconstrictor, and taurine, which is a calcium channel antagonist (just like verapamil). These seem to be what makes a difference and are both found in multiple different energy drinks, not just Red Bull.

this thread was created by my best friend's wife, who does not visit this site often enough to see the thoughtful and caring replies and I think all of you on her behalf for your kind words and suggestions.

I am pleased to report that her husband, my best friend,  has less pain and less frequency of attacks since a change of dosage and timing of verapamil a few weeks ago and as of last week a tremendous improvement thanks to starting the anti-inflammatory vitamin regimen.

there are many dozens of threads focusing on energy drinks on this website and would prefer to steer people to those threads opposed to beginning a new conversation on this thread which should be focused on her concern of her husband and his cycle. I will note that he does prefer red bull ;)

-Gregg in Las Vegas

curious as to what the change in dosing on the verapamil was?

koctail wrote on Sep 19^th, 2014 at 4:54pm:

curious as to what the change in dosing on the verapamil was?

immediate release is much more helpful than sustained release.

-Gregg in Las Vegas

thats funny, i just switched to immediate release about a week ago from extended release at 600mg/day but haven't had total relief yet...still having a couple of nocturnal headaches per night.