I have had CH for several years now. They only hit me when fall turns to winter, shorter days, cooler weather. I live in Atlanta. Usually, a treatment of Prednisone and Verapamil completely knocks it out within a week and I have no problems until the next year. This year is different.

I have been through three such treatments and they are coming most every day now, sometimes twice. I did not have them while on the prednisone. Maybe one or two. Injection sumatriptan knocks them out within ten minutes. But, I can only get 8 injections per month with my insurance. I can get tabs and nasal spray in addition. The nasal spray works fairly quickly too. This year the Headaches have started coming at most any hour. Even during the day time. Some day after a headache I have what I call a hangover and the symptoms are almost flu like. Chills, headache, I do not feel like doing anything. Very sick feeling. Only once did I run fever however. My neurologist had me try Topomax. It was unaffective and gave me blurred vision and lost concentration. I upped my Vitamin D3 and actually had 48 hrs with no headache. May have been coincidence. But, at 6:30 this xmas morn I had a headache. I have refrained from alcohol. I like a glass or two or red wine with a good dinner or a beer at night. I am a light weight drinker when it comes to volume. 2 beers or glasses of wine are about it. I did tests on myself in earlier episodes and it seemed to not matter whether I had alcohol or not. But this round I am feeling so beat down that I am avoiding anything I can think of that may contribute. I have a feeling I am advancing from episodic to chronic. Very depressing. I look forward to reading this site.   Jay

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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1. Symtoms/features of Cluster often change for no apparent reason; may take upwards of a year or more before a fairly firm pattern emerges. Nothing to be concerned about.
2. Given your location, you will have no troulbe finding a headache specialist. Much preferred over, even, neurologists (who have limited training with 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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WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.
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3. Your current meds are too limited (and suggests a doc who may not be as skilled as needed.)
     Print the PDF file, below, both for your education and to use as a tool for discussion with any doc you see.

Standard approach for Cluster is;
  A. Prednisone for a short time (10-days) to immediately killl attacks and tapered off as a long term prevention med is building in your body.
  B.  Verapamil most widely used, tapering up to as much as 900mg (witwh 400-600 being most typical.
  C. adding a quick actding abortive to kill attacks which sneak thru. (Imitrex injection--NOT pill and nasal injection a distant second place.) (This will reduce drug costs a good big once the Verap. is effective.

4. NO alcohol when having attacks and for 2-weeks after what you guess to be the last attack. It's one of the worst trigggers for an attack when we are in an active period.
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You will receive a variety of treatment suggestions here but it wise to not try to self-treat youself until you have sene a good doc and receive a solid diagnosis. He will try his own treatment scheme and if you mix it with other approaches you confuse the doc and prevent knowing which plan is working for you. "Slow but sure wins the race", as the old saying goes.
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Read a lot here and here are other sites to explore;

These 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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Hi and welcome, plus Merry Christmas too

First off, be careful about using prednisione for more than about 10 days or doing so frequently as it can cause issues with joints and other parts of your body. It is normally just used as a short term preventive whilst something like verapamil builds up to an effective dose.

For verapamil, what dose previously worked might not be enough this time. Whilst most people with CH get relief at 360-480mg a day, some need to go 1000mg a day. Only change dose working with your doctor and as it takes 7-10 days for a dose change to become effective, changing it more rapidly will confuse things as to what dose works.

It is also far for uncommon, especially early on in CH, for things to change around symptoms, what works, etc.

Has your neurologist mentioned using oxygen to abort CHs? Using a high flow rate (15lpm+) and a non-rebreather mask you can abort CHs in a similar time to with imitrex injections plus you can use it as often as you need. Using 25lpm I can abort a CH in under 5 minutes. Read up more about oxygen - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

Imitrex nasal sprays can also work well for CH, but the tablets take too long to work, typically 20+ minutes to be effective, so I'd top up on both the injections and nasal spray.

For the post-CH stuff, there could be several things. First off, after a non-aborted CH it isn't too surprising that you don't feel on top form. It could also be what we call shadows which are really just low level CHs. Or it could be something else, talk to your doctor about this as we shouldn't just assume that everything is only down to CH.

For most people with CH, alcohol is a strong trigger and it should be avoided, however there are a few people lucky enough for it not to be a trigger. If you think it may be a trigger, I'd avoid it until your current episode has finished.

Don't worry about being episodic or chronic. This comes up frequently and people in each camp seem to think that it's easier being where they are. Episode lengths can vary and they can be multiple months for some. It is only just a label and worrying won't help anything.

Keep reading, ask all the questions you can think of and remember that everyone here understands CH either as they have it or support someone with it.

Bob and Mike,

Thank you so much for taking the time to respond with so much detailed info. I will pour through every link.

Interesting about the headache clinics. I see  Neurologist in Atlanta whose office has a Headache Clinic as part of the business and my doctor is the head doctor along with one other. Since the initial treatment did not knock the CH out as usual he did up my verapamil to 2-240 tabs from 1. He just prescribed Divalproex(Depakote) for me to try since I could not take topamax. I start that tonight.

Mike, I tried oxygen early in my ch treatment and it did take a little of the edge off but it didn't knock the CH out. In fact, it was less painful but it seemed to extend the headache. I wouldn't mind trying it again now because that was quite a while ago.

I wondered what Shadows were as I was reading here. I had a CH this morning around 7, and unlike yesterday's, at roughly the same time, the nasal spray did not completely take care of this one and it stuck around without really ever going off again. When describing the CH to my friends I often use the burner of a stove as an example. Today's shadow/hangover was like the burner was still on low, with an occasional small surge, but the heat was never turned up. But it gave me chills and I generally felt really bad.

With the shadows have you tried over the counter pain
killers, they are known to help in some folk, also slugging
back a Red Bull, the one that contains Taurine is known
to abort an attack if you catch it in time and knock
shadows on the head.

Hoppy.

jbirdawg wrote on Dec 26^th, 2014 at 9:42pm:

Mike, I tried oxygen early in my ch treatment and it did take a little of the edge off but it didn't knock the CH out. In fact, it was less painful but it seemed to extend the headache. I wouldn't mind trying it again now because that was quite a while ago.

Normally when people say that it didn't work the issue is normally either not using a non-rebreather mask or using too low a flow rate. The page I linked has a load of useful info about both plus good techniques to use to get it to work well.

Hi jbirdawg
Shadows are just what you describe. All the symptoms of CH - there's no mistaking that feeling - but very mild. They can hang around between CH attacks, and even between cycles.

Did you use the oxygen in the correct way, as most people who say it didn't work have not used it correctly. You must have a high flow rate of at least 15 litres per minute (more is better) and a non rebreather mask. If you get either of those wrong it won't be any where near as effective, but if you get it right it should abort the worst CH in 10 - 15 mins. Less if you get on it fast enough. Stay on it for 10 minutes after the pain has gone just to be sure.

Hello Jay,
I live in Ireland and,as you can imagine, the winters are dark and wet, so I experience an increase in activity during the winter months too. Tried the D3, did nothing.
I recently bought 2 SAD lamps and have been using one at home, first thing each morning and the other for 30 minites at my desk in work at lunch time.
I'm a chronic sufferer who has not had a single pain free day in 2 years. However, after 3 weeks of using the lamps, I do feel that the severity and frequency of attacks have diminished. Not gone, but somewhat better. NO sleep last night, but the night before was great.
Its just experimental, but I figure it can't do any harm and the lamps were not too expensive, at €80 each.
Hope this helps.
Peter.

If you can only get 8 injections per month, get a few while you are not in cycle, and stockpile them for when you are.
Maz.