Hello everyone,

My name is Tre, nice to meet you all. This is going to be a sort of introducing of myself and question thread so I apologize in advance for rambling if do.

Well, I am 21 years old and reside in Houston, Texas. I was diagnosed with clusters when I was 17 years old. My headaches are not chronic, I get them in random bouts for weeks at a time. I have been a long time reader of this site but now my desperation has come to a tipping point and I need to ask my own questions.

Here I go, I've been in this most recent set of attacks for about a month and a half now (getting 1 to 3) headaches per day. All of major pain. I'd say 8's,9's and 10's on the kip scale...I've had my own neurologist here in Houston for the last 5 years that was recommend to me but he knows VERY VERY little about clusters. He sometimes googles in front of me to figure things out about them. I guess I'm asking, are there any Houston natives that have a recommendation for me? By now, I am honestly at a point where I want to give up. I use the sumatriptan pens and they do give relief but I can never have enough for the amount of headaches I'm getting...oxygen doesn't work for me.

I would just really appreciate some support/advice on how to mentally and physically keep going with these things. All secrets and pointers, please share!

Thanks

You are in a locatlon where you can find a headache specialist. General Neuros. are often poorly trained in complex headache disorders.
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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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If you have not access to good materials to learn about Cluster:


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]
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Three 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
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
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The PDF filel, below, will introduce you to the most commonlly used meds. Any doc you see should be working from this list.
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Please read extensivelly here and shoot your questions to us--ratrher specific issues are useful and easlier to handle than the, "what should I do?" type.
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Before you are tempted to try any suggetions for treatment which you'll find here, work with the doc exclusively at first. Trying to combine different treatments from different sources makes it impossible to evaluate which fix is working.

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Hi Tre and welcome


Tre wrote on Aug 17^th, 2013 at 1:38pm:

I use the sumatriptan pens and they do give relief but I can never have enough for the amount of headaches I'm getting...oxygen doesn't work for me.

For oxygen, how were you using it? It is frequently used in a way that is unlikely to abort a CH. The best way to use it we have found is a combination of a high flow rate, at least 15lpm and 25+ being better for most, plus a non-rebreather mask. This combination allows me to kill off my CHs in about 5 minutes or so.

Have a read about it at - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Are you taking any CH preventives? Something like verapamil or lithium to cut down how many CHs you should get?

Hi Tre,

Welcome.  Wishing you a speedy end of cycle and some PF time.  In the meantime hang in there.  Nice to meet you!

lots of good people and tons of info.  the Redbull helps me at night (I got that here) and the Verapamil has worked some.  I am also still working on a plan of attack for mine as well.  A very understanding and sympathetic bunch you found.

I was using the O2 wrong until I got some info here!


Bobby

Thank you guys all so much for the information. I was messaged by a couple of people with tons more helpful info. I'm going to put all of this into effect and see if anything comes of it.

Thanks again so much

hey Tre,

Welcome to CH.com.  You've come to the right place.

Regarding your current neurologist...  The cluster headache syndrome is an orphan disorder, (rare) with a prevalence less than one tenth of one percent...  Accordingly, it's very common to find a neurologist who's never really treated a patient with cluster headaches, much less observe a patient presenting with a screaming headbanger...

The best physician when it comes to treating a patient with cluster headaches is one who will work with you and make you a part of finding the best therapy to control this disorder.

The odds are you are vitamin D3 deficient and that deficiency is contributing to the frequency, severity and duration of your cluster headache attacks.

Accordingly, call your neurologist for a prescription for the 25(OH)D lab test or ask for it at your next appointment.  25(OH)D is a vitamin D3 metabolite and it's serum concentration is used to measure your vitamin D3 status.

The normal reference range for 25(OH)D is 30 to 100 ng/mL. From lab test data for 25(OH)D reported here at CH.com and from an online survey of CH'ers using the anti-inflammatory regimen with 10,000 IU/day vitamin D3, the average serum concentration of 25(OH)D before starting vitamin D3 therapy is 28.7 ng/mL, (71.75 nmol/L)... i.e., deficient!

CH'ers who have gone pain free on the Anti-inflammatory regimen and then gone in for the 25(OH)D lab test averaged 81.4 ng/mL. (203.5 nmol/L).

I realize you're likely thinking this is too simple... and vitamin D3 couldn't possibly prevent cluster headaches...  Surprisingly, it is that simple and vitamin D3 is 80% effective at preventing cluster headaches...

See the following link to see what other CH'ers are saying about their experience with the anti-inflammatory regimen with 10,000 IU/day vitamin D3:

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

You can also find all you need to know about the supplements and dosing for the anti-inflammatory regimen at the following link:

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

You can show a print out of this link to your neurologist...  It might help get him on board with vitamin D3 therapy as a very safe and very effective cluster headache preventative.

Feel free to ask questions...

Take care and please keep us posted.

V/R, Batch

Welcome Tre! Glad you found this place, its soothing to know others experience what you experience.  We are all in this together.  Good luck and keep reading the site.  Lots of experiences and lots of good tips.