Hello, my partner and I are new to all of this. He just had his first cluster headache and we found ourselves in ER, terrified he had a brain tumour.  He had been suffering a slow buildup to the actual attack, which came on about 1am...so nothing they gave him the hospital worked.  Codeine, tramadol, even oxygen (once they figured what it was).  They sent us on our way with some more tramadol, ibprofen, and paracetemol.  I did research and gave him a redbull with his tramadol dose and that was the first time his pain went down to about a 3.  He's been hovering around a 2 - 5 pain level since.   

My question is:  it's been about 3 days now and he still has constant pain.  From my understanding, these cluster headaches attack and then subside to no pain...but he hasn't been pain free in over 72 hours.  We know the diagnosis is correct--he was tested for everything else and he has the telltale red, swollen watery eye and drippy nose on the side of the pain.  The pain also seems to move from behind his eye to his neck area...but always there.  Is this normal?  Tramadol seems to take the edge off sometimes, and he hasn't gone back to the level 10 pain he felt last night...but it's worrying that he hasn't found any relief. 

Any advice or thoughts, please?  Thank you. 

It doesn't sound like CH to me.  It also doesn't sound like the ER docs know much about cluster headache.  I suggest seeing a headache specialist.

Hi Beebs and welcome

Headache diagnosis at ER is very hit and miss as even most neurologists do not have the skills or experience required to diagnose or treat complex headache types like CH. What you really must do is to work with a headache specialist to get a confirmed diagnosis which then will lead to the right treatment for whatever it is that your partner has.

The standard diagnostic criteria for CH can be found at - START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

A) At least 5 attacks fulfilling criteria B-D
B) Severe or very severe unilateral orbital, supraorbital and/or temporal pain lasting 15-180 minutes if untreated
C)    Headache is accompanied by at least one of the following:
        ipsilateral conjunctival injection and/or lacrimation
        ipsilateral nasal congestion and/or rhinorrhoea
        ipsilateral eyelid oedema
        ipsilateral forehead and facial sweating
        ipsilateral miosis and/or ptosis
        a sense of restlessness or agitation
D) Attacks have a frequency from one every other day to 8 per day
E) Not attributed to another disorder

At the moment, from what you've described, his headaches do not match all of these criteria, especially on the headache duration which at over 72 hours is a long, long way outside the upper limit for CH of 3 hours. CHs also start and stop very quickly, with the transition from being pain free to in pain / pain to pain free being seconds to a minute or two (typically), not the slow build up that you described.

Whilst there has only been one, not five, this isn't as significant yet.

What makes CH so hard to diagnose is criteria E, where ALL other possible causes must be ruled out first. There are tens of other possible causes for the CH symptoms that will need to be ruled out as they give either the exact same or very similar symptoms. ER isn't normally the place where you get all the required tests done.

Did they give him an MRI or CT scan? This is normally given to rule out things like brain tumours.

Another reason to question their level of CH knowledge is that pain killers are not a standard CH treatment as even the strongest narcotic pain killers do not really touch the pain of a CH, but instead rapidly result in issues like dependency. If you search through the forums here you'll find too many examples of where pain killers have been given only to cause issues (it happened to me when I was given codeine for my CH before they diagnosed CH).

For using oxygen for CH, this should have been at a high flow rate (15lpm or higher) using a non-rebreather mask (this has a bag which fills up, not nasal tubes or a mask with holes in). Lots of oxygen info is at START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

It could still be CH, but you really need to ensure that it is the right diagnosis.

This is a scary time, it's one we've all gone through. But getting the correct diagnosis is essential to finding the right treatment for whatever it is.

Start to keep a headache diary which details every headache with the time, date, duration, pain level (1-10), symptoms and possible triggers. This can help with the diagnosis.

If it is CH, a very common trigger for most people is alcohol, often bringing on a CH in minutes. So it's probably best if he avoids it.

Where are you in the world? If you post say the state / country, then it's possible that someone here can recommend someone from personal experience.

Also read up all you can about headaches, here and elsewhere. Knowledge is critical for dealing with them (I've also sent you a link to a lot of CH info). Then ask any question you can think of as together we've a lot of experience around CH and getting diagnosed.

Finally, you're a great supporter doing this research work for your partner.

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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I assume you were seen in a hospital ER. If so, one of the least reliable places to get proper treatment and Dx for Cluster.

There are many disorders which mimic Cluster but are not headache disorders. So, before you start seeking treatments it's essential that you get a solid work-up froma headache specialist, if at all possible or a neurologists who has good experience & training with complex headache disorders (and a large % do not have this background.)
===
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.
=====================================================================
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.
=================================

With a solid diagnosis, the door opens to a good range of effective treatments.

Thank you all so much for your input. To answer your questions, we are located in Wellington, New Zealand. And no, they didn't do an MRI or CAT scan. They did check his responses as well as looked in his eyes. Checked vision, etc and all normal. The oxygen mask he was given had holes in it... So that may explain why it didn't work. And the painkillers are doing nothing for his pain at the moment. Maybe just taking the edge off.

So many symptoms he has match the cluster headache. Location of the pain (his eye, he said, felt like it was going to pop). The runny nose. The red, swollen, watery eye. But the pain has been constant... Does that make it sound like it's possibly something else? I'm feeling very scared. It being Xmas, we've come to see family in a rural area in Otago. I'm wondering if I should take him to ER again and demand an mri or cat scan? He is barely able to cope and is in bed all day.

Hi Beeebs

I'm in Auckland, so I'm very up to speed with how the NZ health system works.

I've sent you a private message with info. Please read and get in touch.

Mike--I see you are also from NZ!  Are there any specialists you can recommend?  I am just so scared now it may be something else and not a cluster headache.  All symptoms match except the episodic part and the fact that he hasn't been pain free for so long.  The worst part of it, the level 10 that woke him up at 1am and took us to ER...that lasted maybe a couple hours and then came down to a 5 or so.  He received codeine, tramadol, oxygen (with the wrong kind of mask I know now), and an injection (started with an S...not sure what it was) and none of it touched the pain except for the injection which may have brought it down finally.  The fact that his headache has been constant now is a horrible worry. 

It being the holiday season, I'm worried that we won't be able to get the help we need and I'm terrified of leaving it too late.  My worst fear is that it's a tumour or a aneurysm.  But the ER doctor ruled out tumours or meningitis or a bleed. 

The pain is now behind his eye again and also in his neck.  There is a band of tenderness from around his eye across his temple/ear area to his neck.  The illustration of the location of the cluster headache seemed spot on to him.

I so appreciate the help you all are giving me.  I've been a bit of a wreck. 

Hi Beebs

It was good talking to you. I've sent you via PM info on some Auckland based headache specialists and am trying to find some from your area.

Any more questions, just ask.

Hi beebs and welcome,

beebs wrote,
He is barely able to cope and is in bed all day.

I have my doubts they are cluster headaches he's suffering from, best to see a headache specialist as soon as possible.

Hoppy

Hi beebs
I agree with what the others have said.  There are many conditions where symptoms mimic CH, which is what makes "headaches" so difficult to diagnose.

Betting the injection that started with S was sumatriptan. This is the the best med for aborting CH, but it's also for migraines amongst other things.  If your partners pain has lasted 72 hours it's more likely to be a severe migraine. Another reason I say this is because there is no way he would stay in bed with a CH. You get a CH and you just cannot stay still. Ordinary painkillers will have no effect on CH, not even morphine.

Saying it's a severe migraine is not a diagnosis of course, just a best guess. None of us can give you a diagnosis, which is vital in order to get the right treatment, as many "headache" conditions respond to different meds.

Follow the others advice and see a specialist and ask for a scan just to rule out anything sinister.

Hi all, and thank you again for all your thoughts.

We went to ER again and got a CT scan--it came back normal.  This is a relief, but it's going on the fourth day now and still pain.  The injection he got three days ago was Stemetil...not Sumatriptan.  At current ER they gave him a Voltaren suppository that made him super dopey, but he is still feeling pain.  They prescribed Sumatriptan pills for tomorrow if needed.  My question is--is it even safe to administer them and is it too late?  My understanding is Sumatriptan is more of an abortive? 

The ER doctor insisted that he still thinks it's a cluster headache, even though I said my partner's symptoms don't exactly fit in the box.  I just don't even know what to do anymore.  I'll make an appointment with a headache specialist but how can I make him more comfortable in the meantime?

Also--is Sumatriptan risky?  It was scary reading about the possible fatal cardiac arrest side affects. 

Good news about the CT scan results, which means it is "only" a headache. Now the question is what it is.

The treatment they have been giving him with stemetil (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) and voltaren suppository, plus a sumatriptan pill indicates that they are treating him for a migraine. This seems to be more consistent with the symptoms than CH, but that needs a doctor with the right skills and experience to determine. Migraines can last days or weeks.

Sumatriptan tablets (START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE) are used as a migraine abortive. They are not effective for CH since they take 30 or so minutes to take effect. But they can work well for migraines and work best early on in the migraine, so I'm not sure how effective they will be at this point.

Don't get too scared about the possible side effects, the main risk is with anyone with heart problems and the doctor should have assessed him for the risk factors for this medication. Also imagine you were writing a list of risks / side effects for a car or a plane, would you look at the list and want to get in one? They list every possible effect no matter how unlikely.

Most people here will have used countless sumatriptan (imitrex / imigran) injections and I've not seen anyone report issues with them who have been proscribed them. I've no idea how many I've used, along with other triptans for my migraines and CH.

As Mike says, the tablets take too long to work to have much effect on CH.  As long as there are no contra- indications you should ask for sumatriptan injections. They are so good and will knock out a CH in a few minutes. Presumably they will do the same for migraine although I don't suffer migraine, so don't know.
Some people have nasty side effects, but these are usually very transient, and the lesser of 2 evils.

I'm 65, and a smoker, so not exactly the healthiest of people, but I must have used hundreds of them, and don't know how I would have survived without them.  All you can do is try one (there was a first time for all of us) and see how it goes.

The injections normally work just great for migraines, which is what they were originally developed for, with their use for CH being a bonus.

Thank you thank you again for all the input.

It's day 5 and no change in his condition.  The voltaren suppository knocked him out and made him dopey, then wore off and no change in his pain.  He just looks broken.  I'm looking now at another dose of voltaren today or some sumatriptan pills.  I'm not sure which to give him.  Both??  Thoughts?

I also will try and get a neurologist appointment ASAP.  I am now wondering if he may have status migrainous?  CH seems more and more unlikely.  There hasn't been another attack...just a contant severe pain.  It being the holidays, it might be difficult to get an appointment though...

I'd be tempted to try both, with the sumatriptan first. If it will help, it is likely to do so after about 30 minutes or so as it takes a while to be absorbed. If it doesn't help after say an hour, then the voltaren, but do follow any instructions you've been given by the doctor as they will have his medical history.

If you try both at the same time and there is an improvement / change, you won't know which caused it.

Status migrainosus is just a "normal" migraine which has lasted more than 72 hours.

For getting an appointment, also ask about cancellations and ring back often, they'll soon get the idea that you really do want an appointment for him.

Dark days are getting darker... It's almost day 6 with no change.  The sumatriptan seemed to give a little relief...and then none at all.  100mgs of voltaren didn't touch the pain either.  We are going back to ER tomorrow, and hopefully get a referral to a neurologist.

Hemicrania continua sounds like another very viable possibility, but it is a bit terrifying reading how so many people get temporary relief from the NSAID meds used to treat it, and then struggle with the awful GI side effects.  I haven't come across any other possibilities of what this might be, however.  I'm conscious of the fact that a lot of what I read in my google searches are worst case scenarios but it's still very hard.  I want to be informed so I can request the best care, but I also worry about becoming paranoid. 

His eye is blood red on the side of the pain and he has been bed ridden since the 23rd of December.   I am just hoping that a specialist will see him soon.

Can you get to a GP easily.  If so, see if you can get a sumatriptan injection. The pills really are not much good and have never cured one of my "headaches", - too slow to act and not strong enough. If you can't get injections ask for the nasal spray. It's not as good as the injections, but better than tablets. Ask also for indomethicin (along with something to protect his stomach).  If you can get both try the injection first, and if that doesn't work go on to the indo.  But don't use them too close together or you won't know which (if either) is working. Indo has 100% success rate for hemicrania. but not the other conditions. Sumatriptan INJECTIONS  have (almost) 100% success for CH and migraine, for those who can take it.

There are no tests for headache conditions (other than a scan to look for tumours) and diagnosis is entirely reliant on trial and elimination with the meds. Most GPs don't know about headaches and therefore don't know what to prescribe. If you tell him what you want, and he's willing to prescribe it, it could save a lot of pain while waiting to see a neuro. The neuro can then confirm diagnosis and refine the meds if necessary.

Update:  After another trip to ER yesterday we have a new diagnosis.  A slight rash appeared overnight on his bloodshot eye and his forehead and the doctors immediately suspected ophthalmic shingles.  They said it would explain the unrelenting pain and why it did not respond to any painkillers.  Now his greatest risk is blindness but so far the doctors say he is okay.  He is now on anti-virals and morphine and they seem to give some relief.  The rash is a bit worse today, further confirming the diagnosis.

It's been a harrowing week, but I think we are now headed in the right direction for treatment.  I just wanted to thank you all, however, from the bottom of my heart for all your help.  Mike NZ, Batch, maz, Bob, everyone...thank you so much for taking time out of your holidays to respond and provide reassurance.  Because of you, I was able to question the CH diagnosis (which we received twice) and keep persisting with getting my partner checked out.  I am just in awe of this community and your daily courage, strength, and kindness.  It isn't much, but I'll be sure to make a donation to Clusterbusters.org in an effort to give back to this community for the support you have shown us.  THANK YOU!!!

You're welcome. We all know how devastating these undiagnosed pains can be - and how frightening - and how isolating.We come here because if we can provide five minutes of relief for one person it's worth it. We have all recieved the advice in our time, and in my case it was all I had, and most of us would do anything to help out someone else.

I'm so glad your partner is getting a little relief at last. Shingles makes sense - it was the first "diagnosis" I got, as it is the most common type of facial pain. I had 3 incorrect diagnoses before they got the right one, five years down the line.

Even though you no longer feel it's CH, please let us know how he gets along. And if by any chance you question the diagnosis again, come back and talk some more.

Beebs, you too have done an amazing job too. You didn't just accept the CH diagnosis, but went looking for more information, you took him back to ER and questioned the diagnosis (not always easy to do), ensured he had a CT scan, kept researching and observing. All of this will have made a significant difference.

It is also an education for us too as it is always so easy to recognize what "must be" CH, or to try to figure out what the headache type is. But this is a good example to show that what really counts is for a doctor with the suitable skills and experience to make an accurate diagnosis.

In reading up about ophthalmic shingles I found the following to have great info.

• 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
  

I was surprised how common it is and yet I'd never heard of it.

Do update us on how he is getting on.

Happy new year, everyone!  Thank you again for your replies.  Just an update: my partner is doing well and his diagnosis definitely was on the right track.  The rash got worse definitely pointing us in the direction of ophthalmic shingles--although it was a fairly mild rash overall, compared to the severity of his pain. He's still in pain, but it is being managed better now and the anti-virals seem to be speeding up recovery. 

I hope you all had a lovely new years.