Not sure where to start. I finally got diagnosed when I paid to see another neurologist. I didn't know what was wrong with me or even how to describe it properly. The pain is overwhelming I will rock pain and forth, have banged my head against the wall, pushed my head into the pillow in some vain way trying to alleviate the searing burning pain. All I could say  was it feels like my head was going to explode and it will wake me up at night last for days or weeks and go away for months. I really do not know how chronic CH cope.

Anyway, it is a relief to be diagnosed and know I am not insane even though my GP still thinks its partly stress. So much now makes sense the difference in pupils size, the heat, feeling like I had a cold with runny stuffed nose. I guess you all know what thats like.

I am feeling so scared tonight I was using Suitripatan s/c for  the clusters and I was euprohic with the quick relief it gave and the lovely sleep I  had. Thursday I got very intense chest/jaw pain after it. I have been vomiting on and off since then during the day no appetitie and just feeling awful. Went to the Quacks today and BP very high told to not use again, ECG fine and now waiting for oxygen. This will be my 4th night of this and it seems a particulary bad cluster headaches lasting 1 - 3 hours with unbearable pain. Get another milder shorter one thrown in as well.

What can I do to cope when its like this. I am at my limit. I get evil nausea with it too and my neurologist think thats my migraines and another neurological conditons I have Postural Tacyhcardia Syndrome all contributing. Honestly I have dislocated my knee many times before and I would much prefer to have that than this hell.

Sorry for long post. Any advice or support really appreciated :-[ :-[ Breda

Hi Breda, sorry you are having a difficult time, I am too right now.  The best advice I can give you is to read as many posts on this site as posible, there is golden information here.

You say "waiting for oxygen".  How much longer do you have to wait?  I would say get this as quickly as possible, yesterday would be best.  Oxygen should help you greatly, it needs to be at least 15lpm through a non rebreather mask. 

Next, energy drinks like Red Bull, I haven't had much luck with them but many have.  They have to be consumed quickly at the onset of pain.

In the long run though these are only temporary fixes, you need a preventative strategy like Verapamil.

Good luck to you, we all know what you're going through.

A couple of quick thoughts. Jason is spot on. I also wonder if you are seeing a specialist? That can make a huge difference in how you are treated. Also, if you get the vials of Sumatriptan with insulin needles you can regulate the dose. Instead of 6mg you can take 2mg which most of us find effective and it relieves the side effects. There is also available a nasal spray called Migranal, a DHE derivative. It takes longer to work but lasts longer without the trex side effects. I couple that with high flow O2. And I do mean high flow. See the link at the left. Let us know if you have any questions. blessings. lance

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 posts a message.
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If you have the option, locate a headache specialist. Most neurologists have surprisingly little training with complex headache disorders. If you want to stay with the current doc, at least ask about his traiining/experience with headache.

Best alternative:
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.

I am really overwhelmed by the support on this website and information provided to me.  A huge thank you to you all  :). I am Irish but living in England it was a neurologist who specializes in headaches that diagnosed me.

Jason- I am sorry that you are going through such a rough time. I hope it eases soon for you. I am finding a pattern with them happening in September and March, heard that's common to happen certain time of the year.

The high flow oxygen is been delivered Friday. I consider myself very lucky in that my clusters can be as short as 2 weeks half way through and last night not too bad. Although I am getting the burning on my face now already. I think its what people refer to as 'shadows'.

Wishing everyone a pain free or at least bearable night or day. I will let you know how I get on with oxygen. Fingers crossed.

All the best

Breda

Hello, Bree, again!  :)  Shadows are really hard to pin down because the symptoms are different for many of us. We have come to believe a shadow is really a "minor" CH that, if untreated, will become a full blown monster. So, treat a shadow as you would an attack you recognize. For me, it's a just under the skin sensation around my nose and eye, not quite painful but very irritating. I hit it with a Monster and then O2 if necessary. Does keep the grownup beast away, though. Good luck and God bless. lance

Ahh thats helpful to know. I actually didn't get a full blown CH last night. Yippee I actually slept  :D. Meeting My quack again Monday because I am keen to retry the sumitriptan injections again if I can They are a miracle worker. The vomiting etc think was probably down to the stress of CH causing migraine. The chest pain not so sure a little bit is normal right with these injections??

The beast is such a good word for it. Good luck to you too Lance.

I always get the pain and pressure following a trex injection if I go the full 6mg/.5ml route. But when I cut that in half, or even to a third (2mg) I only feel a very minor rush. Most of us find 1/2 to 1/3 is enough to abort which also prolongs the usefulness of a vial. I use vials and syringes instead of the auto injector whenever I can. Good luck and God bless. lance

Your GP is wrong about a link between CH and any suspected stress trigger. We're all different though. GPs making sweeping generalisations like "Stress in CH" can be at times...well, stressful...

As Jason says, read as many posts here as you can.
There are plenty of stressed people with CH and plenty of posts from people who are not stressed, but still have CH. Mike NZ sometimes expresses some similar ideas to me around stress and CH, I get them when I'm most relaxed, or even post-stress. (Forgive me Mike if I've mis-represented your thoughts on this).

September and March?

Check out the dates for Equinoxes this year (and every other): START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
On the table, right of page.

20th March and 23rd September this year are dates of equal light and darkness. The day and night periods are exactly the same length.

Somehow plants and animals know when the day has become longer than the night, or the night longer than the day. Within just a couple of weeks plants flower and different insects emerge.
So does CH for a lot of people.

I mapped this looking for a statistical correlation using the data from headache diaries posted in Australia. The diaries were too unreliable to draw any conclusions. But around every 2 weeks before and after every Solstice or Equinox, the newbies came pouring into the site. There was a noticeable lull in posts at other times from the episodic ones.

Sufferers of Seasonal Affective Disorder (SAD) at latitudes far from the equator can testify that photo-period can have serious health implications for them.

I reckon your Hypothalamus knows what the day length (photoperiod) is and chucks a bunch of CH attacks at some people. I have no proof to back that observation, but years of reading posts always anecdotally shows up the same times of year as suspect!

Perhaps the D3 regimen, via VDRs is fooling our Hypothalamus into thinking that we are getting loads of sunlight, thus avoiding the significance of photo-period length in CH?

Just a thought...

Cheers, Ben.

Urge you to work with your excellent support group and obtaining a referral to a headache clinic.

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

wrote on Mar 13^th, 2014 at 8:27am:

There are plenty of stressed people with CH and plenty of posts from people who are not stressed, but still have CH. Mike NZ sometimes expresses some similar ideas to me around stress and CH, I get them when I'm most relaxed, or even post-stress. (Forgive me Mike if I've mis-represented your thoughts on this).

From what I've seen from people posting here (not a exactly scientifically valid methodology, but still illustrative of a likely link) it seems that often it is the change from a low stress to a high stress state or the high to low variation that acts as a trigger.

I know that from my own CHs that there is a clear correlation between the day of the week and the number of CHs I get, with work days having significantly lower numbers of CHs and a significant increase at the start of the weekend when work stress drops.

This could be potentially a similar mechanism to that seen with apparent increases in CH around the equinoxes where there is the change in the pattern of longer / shorter day / nights.

I personally can't find any triggers for clusters. They do seem to happen March and September, and I think if my room is too hot during a cluster bout it will make them worse. Definitely was not stressed when my last one started, had not drunk alcohol in days or eaten bad food that night. Literally comes out of the blue or so it seems.

Clusters make me very stressed but then writhing around in agonizing pain and been awake most of the night would do. Hopefully now I have have some abortive treatments I won't  get in such a state next time time

Its really interesting how the change in seasons seems to be a factor for a lot of people. 

Bob- I have phoned the OUCH helpline and they were great. They recommended zolmtriptan as an alternative abortive to imigran and/or prednisolne. Their forum is not that active though.Hope I keep been lucky and only getting once or twice a year ;)