Hello everyone,
My son who is just turning 18 next week has been having chronic CH (if that is the correct description) since just prior to him turning 16.  He has been on multple meds, with nothing really working.

When his CH first appeared he would get multiples (6-10) daily with the majority occurring in the morning starting approx 9:30 am.  The next most recurrent tim is 11 am-12 noon).

I'm desperate to find him some relief!  Currently he is not taking any meds, but has oxygen therapy, although after reading the O2 section he may need some adjustment.  His current prescription is up to 15%.  It does seem to provide relief, but he often caught out of the house. 

Any suggestions for leaving the house, other things?

You came to the right place for lots of suggestions!

Glad you're reading up on the latest O2 info. Some of us will take a small portable E  tank (O2) with us in the car when we're out.

Chugging an energy drink like Red Bull along with the O2 can really help. It's something about the taurine/caffeine combo. Some CH'ers can actually abort a hit with just the energy drink, no O2 (!).

If you can afford it, I'd recommend looking into a demand valve system for his O2, even though it's not really covered in the oxygen info here, because it can help all that much more with quick aborts, and with conserving supply with small tanks.

There are some parents of CH'ers over on the clusterbusters.com message board whom I bet would love to talk to you, especially since they've found very effective prevention relief without pharmaceuticals for their kids. Clustermom13 has had great success with this for her son who is the same age as yours, as has CHfather with his adult daughter. They used Rivea Corymbosa seeds. Does that sound kind of out there? Well I understand, it did to me too, but it turns out these have been used very successfully by indigenous peoples for thousands of years, and IMO at least they are many orders of magnitude less risky than any prescription drug. They could theoretically be a hallucinogen in super high doses, but not at all in a small CH dose of 40-50 seeds. They are legal to order and possess. Here's a talk by Clusterbuster.com's founder Bob Wold about the stronger clusterbuster treatments: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
And a Newsweek article about clusterbusters: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Beyond this there are so many more good non prescription / non toxic treatments.

There's a new vitamin D3 regimen, melatonin for night hits prevention, etc. Please stick around and learn about 'em all!  :)

Hi Devin's Mom

Could you post your location as this will allow people to give location specific advice, although I suspect from the mom part of your name you are in the US or Canada.

Devin should be using a preventive, which should be able to block a large proportion of his CHs. Verapamil is very popular for this, typically at doses between 36-480mg a day although some go as high as 1000mg. Other people use lithium or topomax.

We are also finding that a combination of calcium, vitamin D3 and omega 3 appears to be another effective preventive.

Oxygen is great for aborting a CH. Personal experience plus info from the forums indicates that a higher flow rate gives quicker aborts. I average a 6 minute abort at 25lpm but almost twice that at 15lpm. Make sure he is using a non-rebreather mask too. The oxygen page has a load of great info.

When away from home I take a small rucksack containing an A tank, regulator, mask plus Red Bull with me. It is pretty innocuous and it means I can abort a CH almost anywhere quickly.

Red Bull or anything similar with both caffeine and taurine when chugged at the start of a CH can help reduce the intensity / duration of a CH.

There are other abortives which people use with imitrex being the most common. The injectable form works in a few minutes and people often have them for when out and away from their oxygen.

Keep reading and asking questions. There is a huge amount of info and experienced people here to help.

Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you
You can add your location by editing your profile. CP Member --> profile
BUT, Please!, don't post your messages at this location. They won't get the attention you want: use the appropriate sections which follow.
===================
Please, give us some medical history BEFORE you accept any treatment advice from us. Without a firm, medical diagnosis, it's not wise for you to treat him or ethical for us to offer advice.

If at all possible, we strongly suggest working with a headache specialist because most docs have such limited training/experience dealing with complex headache disorders, especially Cluster.
-----
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. 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.

5. 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.

6. 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.
======

If you have not done some basic reading on Cluster, start now, even as you seek a good doc.
--



Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (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]
---

A couple of sites which are worth your attention: medical literature, films, plus the expected information
about CH.

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 Search under "cluster headache"
---
Explore the buttons, left, starting with the OUCH site.
=====
We have some good material/experience to offer but we all need to know the correct target.

Devinsmom,

Check your PM inbox...  There's some good stuff there and more to come if you need it...  Devin may need a higher oxygen flow rate.

Take care,

V/R, Batch

Hi i am a new member.  I am 40 yr old single mom.  About 10 yrs ago, to make a long story short, i was drugged and abducted and i was left for dead.  I awoke from a coma and had severe head injuries, I did have a miraculous recovery and was able to go home and return to work. But then, these strange headaches came every night waking me at around 2am. It was hard to explain to people how excruciating the pain was and hard to get diagnosed without someone assuming I just wanted drugs.  it went into remission for a few years and in the 10 years since my "accident" CH has been out of remission 3x or so lasting a few weeks each episode.  I guesse i don't have it as bad as some, my episodes last about 20 minutes.  I have no treatment. I am just now concretely being able to convince people this is what i have.  I am very typical with symptoms.  I am so glad I found a home here to talk to others that have this horrible infliction.  My name is Laura and I would love any information on this condition. such as discussing treatments with my dr.  if it is only out of remission every 2-3 years for 2-3 weeks at a time, what is best for me.  Im sure they will scoff at the oxygen tank suggestion which seems to be effective.  p.s its out of remission now, been 9 days so far, 2x a day this time not in middle of night which i think is sooo much  better. that being afraid to go to sleep nonsense was making me look like I had been driven hard and put away wet....ugh
any comments suggestions prayers are helpful
LaLa

Hi LaLa - I'm thinking that in your case O2 would be really good and possibly also the vitamin D3 regimen.

Many doctors will prescribe oxygen, but it's tough to get them to prescribe it at a high liter flow, so some of us will just take their prescription for whatever liter flow, then proceed to choose a liter flow that is actually effective for us.

It can take 10 minutes to achieve a complete abort with O2, but my experience, and that of many others, is that during that 10 minutes the pain level becomes arrested and doesn't rise as it otherwise would have. Chugging an energy drink like Red Bull right at the onset can really help the O2 work, and some even abort CH hits with just Red Bull, no O2. Welding O2 can be used without a prescription BTW.

The D3 regimen can apparently take as long as 2 weeks to kick in for some, but only 2-3 days for others. Here's the discussion topic about it: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Personally, I don't think I'd screw around with a prednisone taper prescription, considering where you're at in your cycle. One of the controversial things about it is that some of us believe it can make the attacks come back stronger, and episodes (the painful "out of remission" time period) last longer.