For the past month or so my 23 year old husband has been having excruciating headaches and severe nausea. We went from doctor to doctor and he was even hospitalized a few times. After numerous misdiagnosis he was finally just diagnosed with CH. While its a relief that to finally know what he has, I'm started to really feel hopeless. So far his CH appears to be chronic- his pains stays for weeks at a time, sometimes without any relief whatsoever for a full day or two. Out of four weeks he was only been consecutively painfree for four days. He is on very heavy painkillers but they only work for about an hour at a time and the oxygen doesnt seem to help much either. The one time he took imitrex it lasted for about two hours. I'm starting to really bug out. Any advice or support would be much appreciated.

Dear Bek,

It's not entirely obvious from your description, at least to me, that your husband indeed has CH.

He should complete the quiz on the left of this page and get a another opinion from a real headache specialist.

What could possibly contradict a CH diagnosis (but doesnt necessarily have to!) includes:

Nausea - Can happen but is fairly rare and more associated with Migraine than CH.

Continuous Pain - CH pain occurs in attack form from anything between 30 min to up to 3 hrs. Thereafter, you normally get at least some time of relief before the next attack. I have never heard of CH to be continuous. At the same time, during an episode it is also very rare to be attack free for 4 consecutive days.

Chronic - Episodic Cluster lasts between 2 weeks and several months and is then followed by months of remission. The definition of chronic CH (though it varies) is generally continuous CH for a duration of one year with remission periods of less than 2 weeks. I am chronic, so I know. If it is the first time your husband experiences this kind of pain its too early to tell. CH morphs over time and the patterns will change. CH can go from episodic to chronic and vice versa.

Oxygen - Be sure that he uses oxygen correctly. Oxygen is the abortive of choice for many of us but only works if used correctly. Also on the left of this page is the oxygen info which tells you how to use it properly.

Once you have established that you are dealing with CH you need to start discussing prevention with your doctor and get your arsenal of abortives to fight the beast, for once it comes into your life it is regrettably here to stay.

You may want to discuss with your doctor whether your husband can take prednisone, a steroid that can help him curb his attacks pretty much immediately. Simultaneously, your husband should start taking preventatives, for the attacks generally come back once you finish the steroid treatment (sometimes the cycle is terminated by then, generally not). Most prevents take several weeks to take effect. Steriods are not a long-term or preventative therapy.

Preventatives include Verapamil or Topamax or both in combination. There are others that you can read about in these pages but these two are the most commonly used by many of us and for "newcomers" should be tried first in my opinion.

Finding the right preventatives will be a journey for the beast morphs all the time and for all of us respond differently to meds, treatments and side effects.

Since it is not more than a blood test your husband may wish to consider testing his testosterone levels. Since it is by now pretty clear that the Hypothalamus plays a role in CH, there is increasing evidence that there may be a connection between low testosterone levels and CH. For some of us addressing this imbalance has improved the condition, for some it hasnt.

Be sure that you have all the right abortives at hand in case the prevents dont work.

O2 is the weapon of choice when used correctly. Imitrex injections are important as a mobile abortive. Energy drinks with a combination of Taurine and Caffeine also work well for many of us if consumed at the first sign of an attack.

Hope this helps. I wish your husband many pain free days.

Thanx for your help. My husband has tried the steroids for a week which did absolutely nothing. and he was also on topomax for a short time. His pain is continuous, but it varies in severity. However he sometimes is not completely painfree for up to two full days. He also is flushed on one side of the face, one eye tears, but he reports pain on behind both eyes. Have any of CH sufferers have a visible (for a dr.) pressure behind their eyes?
Anyway we are going to a headache specialist in a few hours. i will update on what she says.

i live in the NW part of the U.S. The specialist said he may have CPH or CH so shes treating him for both: indocin for CPH and depacote for CH. She also perscribed imitrex (pills and injections). HE also takes oxygen 10-12 liters/hour. NOTHING is working!!! I've heard that only 25+liters/hour works- is this safe??? I'm desperate! In others experience, how long should it be before i could expect to see him get some relief?!

With the oxygen (o2) is he using a NON-REBREATHER mask, these have a bag on them and are a very important part of successful O2 aborting CH hits.

Don

You are wonderful to be so supportive for your husband.  Many would say it is a given as he is your spouse, however many marriages and families have been destroyed due to CH's, hang in there and continue your loving support, I commend you

I agree with what others have said....proper o2 therapy, stay far away from painkillers, take the cluster quiz, review cluster survey and recommended meds, find a qualified headache specialist, research as much as possible as knowledge is power, pray, be strong.