I've been getting cluster headaches for about a year now. I literally just found out what they were this last week. (after an MRI, and a few doctors). Not that being able to put a name to them has helped.... I obviously don't get them as frequently as most the readers on here, I seemingly cycle monthly with my worst cluster being three so far! (after reading some personal experiences I feel lucky, both with my frequency and quick diagnosis)

I know everyone is different but please tell me what to expect? I have certainly increased in frequency, and my worst came in January. Is it likely to even gets more frequent? are other peoples night attacks worse than their day attacks? (I've only had two night attacks but  the worst pain I have EVER felt was that night attack)... do people find triggers? I can't help but feel very scared and anxious, I'm a college student and it doesn't help to get what feels like shadow pain in class!

Remember I'm in my first year, and still very lost, confused and scared, so ANY information would be helpful... I'm still not even sure of whats happening to me, and the only thing I've been given is migraine medication... it does nothing.

FIRST,
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
=================================

I hope that you have access to a good headache specialist for, as you suggest, so many docs lack the training/experience/education to treat us. If not, hope you can find one:

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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Second only to having a good doc is your learning about Cluster. Knowledge gives us a sense of control and works to restrain you anxiety.

Need for a good diagnostic work-up is to confirm that you have Cluster and not one of a numer of disorders which mimic Cluster but which are not headache disorders.

Until you settle on a doctor and get the initial workup completed, would encourage you to not get involved in using treatments which you will see here. Mixing a variety of treatments from a number of sources can create problems.

So, basic learning:


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.
=====

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
------

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE Search under "cluster headache"
-------
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.
=====

Try and develop patience. Thousands of us have run this course and survived in good shape. While there not be a good cure there is good control which will allow you to have a good life.

Step 1: Get yourself a big-ass bottle of Oxygen, a non-rebreather mask and a regulator capable of 25LPM minimum.

There is a learning curve to using the Oxygen effectively.  1.  Be sure your face mask seals tightly against your face. 
2.  Be sure you are using a sufficient flow rate (15LPM minimum).
3.  Stay on the Oxygen for at least 10 minutes after the pain has completely subsided.
4.  Chug an energy drink just before starting the O2. I prefer Monster Khaos for the flavor, but any energy drink with Taurine and Caffeine will do.

Oxygen is the best weapon we have in our arsenal.  It can be a little cumbersome, but it is so worth it.

Thank you so much for all the great information, Bob! I am in college in Indiana, but my primary residence is Ohio. I'm only 21, so I haven't much of a medical history just the usually injuries from sports and such - this is the first "real" thing I've dealt with.

And thanks as well, djphrenzy... I'm curious though, why the energy drink before starting O2...though, doesn't matter how crazy it sounds, when the headaches hit there's pretty much nothing I wouldn't do to make them stop... also is there away to transport O2 easily? I've had 3 different headaches at 12:15pm on the dot... not exactly convenient for the average work day.

haas wrote on Feb 20^th, 2013 at 4:45pm:

Thank you so much for all the great information, Bob! I am in college in Indiana, but my primary residence is Ohio. I'm only 21, so I haven't much of a medical history just the usually injuries from sports and such - this is the first "real" thing I've dealt with. And thanks as well, djphrenzy... I'm curious though, why the energy drink before starting O2...though, doesn't matter how crazy it sounds, when the headaches hit there's pretty much nothing I wouldn't do to make them stop... also is there away to transport O2 easily? I've had 3 different headaches at 12:15pm on the dot... not exactly convenient for the average work day.

Taurine is highly active in various physiological functions.  The mechanism of action isn't fully understood, but the combination of Taurine and Caffeine seems to have vasoconstrictive and calcium channel blocking properties, similar to verapamil.

In short, Energy drinks with Caffeine and Taurine seem to take attacks down a couple notches.  Many of us have found them useful in preventing "re-attacks" when used in conjunction with Oxygen.

Please note: If you are taking Verapamil, limit yourself to one energy drink per day.

As far as transporting Oxygen easily, not really... it's just kind of cumbersome.  I told my employer "I'm going to need to keep an Oxygen tank on the premises, and you're going to be ok with that."  hahaha

Welcome to the board Hass. What Bob said about a headache specialist neuro yet is really important.  We have seen the best results from doing so. There are hundreds of headache types, some which mimic CH, and it’s important to eliminate those before arriving at a firm diagnosis.


Here's some user recommended docs to start with in Indiana:

Indiana
Indianapolis:
Dr. Robert J. Alonso
Indiana Clinic Neurology
Dr. Bette G Maybury
Merrillville:
Dr. Kathryn A. Hanlon
Northern Indiana Neurological
Dr.Larry Salberg
Northern Indiana Neurological
New Albany:
Dr. Joseph F. Seipel

These are the Ohio listings:

Ohio
Cincinnati:
Dr. Joseph Nicolas
University of Cincinnati Physicians
Cleveland:
Dr. Mark Stillman
Cleveland Clinic - Neurological Center for Pain

Dr. Stewart J. Tepper
Cleveland Neurological Center
Columbus:
Dr. Francis J. O'Donnell
OrthoNeuro
Grove City:
Dr. John Horn (PCP)
Grove City Family Health
Hilliard:
Dr. Donata Rechnitzer (PCP)
ExpressMed
Lewis Center:
Dr. Perry D. Mostov, D.O.

OSU Family Medicine at CarePoint Lewis Center Primary Care

Westlake:
Dr. Carl Ansevin

I’ve had CH for 34years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link as it must be used correctly or it will not work

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

This link will show you how to get set up with welding oxygen:

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

Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

Follow this link  to the medications section of this board and read the post  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

It’s a vitamin/mineral/fish oil supplement, all over the counter stuff, that’s providing a lot of relief for people who have tried it, it’s healthy for you even without CH! It's had me off cycle for 3 years...it's pretty amazing, please give this a try like NOW!

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these. I use the energy drinks with the 02 as they seem to speed the abort and push the come backer attacks several hours down the road.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Also, where are you at in Ohio?  I'm in the southern suburbs of Dayton.

Hey Hass,
     I'm new around here too. There's a lot of good info and experience here along with a bunch of people eager to help. Unfortunately for us it takes one to know one and I have never met another person with CH until I found this msg board a couple days ago. I was just certain that I had a brain tumor for years but Drs told me I was fine. When the beast comes calling your not fine! Once I realized that I was not gonna die from it or have an aneurism I felt a lot better. So ride that peace of mind as far as you can. You have to check out Batch's vitamin D3 treatment. I'm sure someone will post you a link to it soon, I would but can't. If click my name on my last posted board you will find a lot of info that Batch sent me yesterday. There are several threads on it too, you just have to search them out.

Hi Haas,

Although I sent you a pm earlier, I want to publicly add my enthusiastic support to recommending the Vitamin D3 anti-inflammatory regimen that has been working miracles for so many people.

The specifics of the regimen can be found in the Medications, Treatments, Therapies forum under the heading "Anti-Inflammatory Regimen and Survey".

[smiley=shore.gif]As I said in the pm:  Run - don't walk to the nearest drug store or anywhere you can buy vitamin and mineral supplements. 

The cost is low; the potential benefits, priceless.   [smiley=thumbsup.gif]

I told my employer "I'm going to need to keep an Oxygen tank on the premises, and you're going to be ok with that."  hahaha[/quote]

I did exactly the same!!

Heya clusterbrother,

Some thoughts:

I carry an e-tank with me EVERYWHERE I go...a cart is nice...but not necessary. It stays in the car..or even in my office...employer don't care about anything other than performance....O2 will change yur life.....

...anecodotal (tho not scientific....yet) evidence from this site indicates that a combo of caffeine/taurine is way better than either alone...and I am an advocate.

...a previous treating neuro (pre-eminent in field) forbid me from combining both....she said "we just don't know enough about the neurological effects!"...while she possibly saved my life..I just couldn't ignore the family reports..not anywhere near proud of that...sometimes a fella has just gotta do what a fella's got to do..

..now then...that said....if you don't confide EVERY detail of your condition and efforts to alleviate to your treating....you would be a bigger fool than I ever was...

Best,

Jon

The good news: no matter how bad it hurts, you don't die at the end.  :D

I still remember my first attack, and I thought I had a brain tumor. I told my wfie, "This is it, I'm not going to make it through the night." We were both scared, and she took me to the hospital (where they had no clue what to do with me except knock me out).

I'm a caffeine/energy drink believer. I don't have O2 because of personal fears about it. I'm also a believer in the water treatment. Drink lots, and lots of water. Drink water all the time. I swear, i think that was what kept The Beast away for five years for me (I recently stopped drinking as much water, for some stupid reason). I'll be returning to my water routine.

I had five blissful years of drinking, eating whatever I felt like and even going to bars with smoke. Plus, water is good for you!

Also, be cautious of any new medicines you get on. Know that anything can change your body and bring on an episode.

I had some issues with the taurine, caffeine combo. It knocked my headaches down initially, but then I'd get a rebound that would last almost half a day, sometimes more. If you find you are getting prolonged rebound headaches, you may want to drop the Rockstar. Hope you find a way to get this under control.

My husband trained with Dr Stewart Tepper. My neurologist in Seattle consulted with him.
He is the ONE you want to see!
Best of luck! Wishing you some pain free days soon.
(the regimen I am now on is Zonegren and Diamox for preventative, Indocin 100mg and Vistaril 50mg for an attack and imitrex and DHE-45 inj, but careful with those two because I am just coming off a nasty bout of rebound that went on and on and on ...
O2 didn't work because I had scarring on the artery in the trigeminal area from surgery that causes strangling during the hyperventilation and even worse pain!

[quote author=6366756C70666B6C6275070 link=1361385771/11#11 date=1361647345]The good news: no matter how bad it hurts, you don't die at the end.  :D

I recall feeling at times that this wasn't necessarily good news...  :'(

I think one thing you can take away from this thread is that there is no one right treatment or therapy.  Each of us responds differently to different treatments.  Verapamil completely stop headaches for some people with minimal side effects, while for others it's all but worthless.  Some of us swear by energy drinks, while for others it makes it worse.

Start with the treatments with are successful for a high percentage of people, and work your way down until you find a combination of therapies that work for you.

djphrenzy wrote on Feb 26^th, 2013 at 1:40pm:

I think one thing you can take away from this thread is that there is no one right treatment or therapy.  Each of us responds differently to different treatments.  Verapamil completely stop headaches for some people with minimal side effects, while for others it's all but worthless.  Some of us swear by energy drinks, while for others it makes it worse. Start with the treatments with are successful for a high percentage of people, and work your way down until you find a combination of therapies that work for you.

And that, in a nutshell, is what this board is all about! ;)

Joe

Guiseppi wrote on Feb 26^th, 2013 at 4:03pm:

And that, in a nutshell, is what this board is all about! ;) Joe

That and a nice place to come and vent one's frustrations with the aforementioned process where people can actually relate.  There's something quite powerful and helpful about someone saying, "I understand," and you know they actually do.