Hi everyone, I posted in another folder ( Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ) but wanted to post in here in case there's more visibility. My other post has more details (and more questions/concerns), but some questions:

Has anyone gotten a headache that just won't go away, after starting Imitrex? My husband has had a constant one since he started Imitrex earlier this week, on top of the CH attacks... his doctor brushed off the question about this,a nd said keep using Imitrex but only 2-3x a week. (He had 3-4 hits each day earlier this week..I'm not sure if it's related to the Imitrex  or something else but he's now having 1-2 hits a day rather than 3-4, knock on wood, but the length of the attack and the severity on the pain scale are the same or worse.) We've also read somewhere that Imitrex can increase frequency and severity, and the CHs can return or get worse if you stop using Imitrex. (So now he's afraid to stop, even though it hasn't helped shorten any of his attacks or make any any less severe.)

It seems like most on here (or maybe on average) are on:
-oxygen and/or Imitrex (or similar)
-something similar to prednisone to try to break the cycle
-a preventive medicine

My husband's doctor didn't prescribe a preventive medicine, and from what I've read, the preventive should be started the same time as prednisone so that it takes effect when you taper off the prednisone. The doctor also seemed to think oxygen should be used later if prednisone doesn't work..(when he already knew Imitrex doesn't help at all).

Does anyone have suggestions on how to actually get some sleep? He's sort of terrified to sleep since he's woken up in pain from one of the CH attacks, and has barely slept in the last two weeks. He's taking 10mg of melatonin a night, and it may be helping a little but not enough. He tried Ambien the other night (just once) but it's not clear if it really helped - he slept 4 hours instead of 3 hours. Does anyone have suggestions? The doctor basically said turn off the tv/start relaxing an hour before bed, then when you get in bed if you can't sleep in 45 minutes get up and read for an hour and try again. But the problem isn't that he's not tired or doesn't think he needs sleep, it's that he's too scared to sleep. Ugh.

Lastly, has anyone had success with oxygen, but not on the first try? My husband was on oxygen a few nights ago, and then had a CH attack while on the oxygen. It may have shortened the attack by maybe a minute but it was still the same pain level. Oxygen the same night a little later relieved the constant headache he's had after starting Imitrex, but that headache returned shortly after... The doctor didn't prescribe oxygen so I'm going to have to push for it asap, or we may look into getting welding oxygen. It's at least something that may help and I think he'd find some comfort in having it available.

Thanks in advance for any suggestions/words of encouragement/anything. And good luck to everyone on here - I don't exactly know what you're going through but I hope you all get some rest and pain-free days soon.

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If you have the option, get to a headache specialist. Clearly your current doc is not handling your husband with skill.
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LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. 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.

3.  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.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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.

6. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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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That Imitrex injection isn't going the job demands that the doc must consider that you are not dealing with Cluster. A more comprehensive diagnostic work-up would be a wise move.

This material is not comfortable to read but it conveys why a broader work-up is suggested:


Link to: cluster-LIKE headache.

Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"
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See the PDF file, below.

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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]

Krys,
You might want to send Catlind a pm.  Her husband is in the military (she has ch) and she might be able to give you some tips for getting around the TriCare bs.

carolyn