Just to follow up, she is an otherwise healthy 24 year old woman. Quit smoking 5 years ago . Drinks only occasionally. Relatively active and we eat fairly clean.

Hi and welcome, just sorry that you had to come here looking for answers for what your wife is going through.

First off, it is essential to get a definitive diagnosis from a headache specialist. Whilst the symptoms you describe sound consistent with CH there are multiple headache types that give either the same or very similar symptoms plus there are other potential causes which need to be ruled out too, like tumours. This is a complex area of medicine that is beyond the skills and experience of most GPs and many neurologists, so ask to ensure that they have CH experience.

If it is CH then pain medication is not the answer. Even the strongest narcotics do not touch the pain of a CH and there are issues such as addicition, needing ever increasing doses and medication rebound headaches. Many people here, myself included, have been sent via this route so we know from experience.

When CH first starts it doesn't always follow the classical symptoms, it can take days, weeks, months or years to develop, so if a symtom like the pain intensity doesn't quite match what you've read about then this alone doesn't rule CH out. This is another reason why you need someone with experience with CH to do the diagnosis. I remember my first few CH being what I thought were pretty bad, but with experience they were actually pretty mild, which is fairly common. Similarly they need not be quite as regular as they can be too at first.

The pain level also does vary between CHs, some can be relatively mild by CH standards but some can be pretty horrible. We tend to use the Kip scale - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or .

She should avoid alcohol, it is a very common CH trigger. But even avoiding it, if it is CH then she will still get them.

Whilst it is very tempting to try busting or something else before you get a diagnosis, it isn't a simple choice as it might not be CH and doing something like busting might not be advised for all possible causes of the symptoms.

So I'd explore all the options you have to get a diagnosis as soon as you can. Then she can start the correct treatment for whatever it is.

CH frequency seems to vary between people. Some are chronic where they get it year around and at the other extreme there are people who get a cycle once every few years with most people somewhere between. It is unlikely she will just get a single cycle. So it is well worth spending the time sorting out an effective treament plan for her.

I hope that this answers some of your questions. Keep reading and ask all the questions you can think of. Hope you get a diagnosis for your wife soon. We've all been through the process of getting a diagnosis, so it is just one of the things we can empathise with.

100% agreement with Mike NZ! This is not a problem for self-diagnosis & treatment.

Don't waste your limited $ with GPs. You are blessed to be in Atlanta so you can find a headache specialist.
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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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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.
====================
Print the PDF file, below. Any doc you see should be working from this list of the most commonly used meds for Cluster. And it's a good tool to guide you discussions with any doc.
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Besides reading here, explore these sites for more understanding.


Thre sites which are worth your attention: medical literature, films, plus the expected information
about CH.

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or Search under "cluster headache"
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Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
  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 initial presentation of symptoms can change marekedly for weeks to several months before they settled down, i.e., don't panic with changes but keep the doc informed.
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You may expect, from a skilled doc, a three step treatment program.
  1. A brief period of a steroid which will kill attacks within a few hours but then tapered off as,
  2. A long acting med with blocks/reduces attacks is started but takes a few days to become fully effective.
  3. And then, for long tem use, a fast acting abortive med which kills attacks which sneak past #2.

You'll see these meds reviewed in the PDF file.

As painful as Cluster are, there is no danger--permanent disability, etc. Once you get a good treatment program working, the majority of us are able to live quite normal lives.

BUT, immediately: NO alcohol. It's a powerful trigger for an attack. The role of smoking is not clear but tapering down/off is a good idea if she can do it without too much stress.

Assuming it's Cluster, you'll be with us for a long time so keep on reading.

As wimsey said, before you get a proper diagnosis from a neuro (and you must do that) there are three drug free options which may help.

The first is oxygen, BUT You need ha high flow rate of at least 15 litres per minute(25 is better) and a non re-breather mask. Both these factors are important and the oxygen won't work if you get either wrong. Low flow won't work. Nose canula or wrong mask won't  work.

Second, try a red bull. At the very first sign of pain (don't wait till it ramps up) gulp down a red bull or similar energy drink. It's the combination of caffiene and taurine in a sudden hit which does the trick, so any energy drink with those ingredients will do. It doesn't help every one, but lots of folks have found relief so worth a try.

Also, check out these boards for posts by "Batch" for info on the vitamin D3 regime that has given relief to so many.

If it is CH (and I say IF) then it probably wasn't the perocet that worked as pain killers are useless for CH. Not even morphine. You need vasoconstricters to abort this pain. More likely that her attack came to an end by it's self. A typical CH lasts any where from 20 minutes to three hours although there are many variations outside of those numbers.
I myself had one once that lasted 16 hours (just the one thank god) but mostly they are between 30 mins and an hour - typically 45mins for me. It can change though, so NEVER get complacent. You cannot ever predict what this thing will do, except that it will always come back eventually.

Episodic CH comes in cycles which generally last a few weeks and then remission which can be a few weeks to years. With chronic CH remissions are much shorter, or non existant. VERY few (lucky) people only ever have one episode. CH is a life long condition. Not every attack will be as bad as you've seen in the videos, but you never get 2 the same. I've had a few like that, but also some mild ones that, although painful I can still function. Most of mine are somewhere between the two.

No one here can give you a diagnosis, but my 2 cents- from what you describe it does sound like CH to me although there are other conditions which mimic CH. Google "trigeminal autonomic cephalgia". When you do see a doctor it may give you a head start as most of us jump through hoops for years trying to get a diagnosis. She should also get a scan to rule out anything else.

Keep coming back here and you'll find all the support you need, but your wife must see a specialist. They are the only ones who can make the correct diagnosis, and give you the correct treatment.

Hope I've clarified a few things for you. Let us know how you get along.
Regards
Maz.

Not every one gets all the symptoms so your wife may never experience the droopy eyelid.
They ar just a list of symptoms that we CAN get, and are all common to CH.

There is a highlighted yellow tab on the left of your screen called "oxygen info" which will tell you all you need to know. A lot of people use welders oxygen (but don't tell the suppliers what you want it for)  and buy their own mask and regulator. Masks can be bought reasonably from "CH.com store" also highlighted yellow.

Oxygen is the first line of defence for almost all of us. It's completely drug free and won't interfere with any other meds, or getting a diagnosis. It's miracle juice.

Verapamil is taken as a preventative. Sumatriptan (also called imigran or imitrex) is one of the best abortives. It comes in pill form which is not too good as it takes too long to get in your system, Nasal spray (haven't tried that) and auto injections which are a life saver. They will abort a big one in a few minutes. Oxygen and sumatriptan are both vasoconstricters. CH is caused by a dilated blood vessel which presses on the trigeminal nerve. Vasoconstrictors will shrink it back to its normal size, thus taking the pressure off.
You could also try ice packs, or a very hot shower. Doesn't work for me but does for some.

It's early days to be giving meds advice as you haven't seen a doctor yet, but knowledge is power, and it may help you speed things up a little.

Finally, thank you for caring so much about your wifes condition. No one can really understand this pain and many of us are accused of making it up or attention seeking. I've been laughed at, told to pull myself together because nothing is that bad, and my best friend called me a drama queen. I replaced her with sumatriptan. We all need our supporters so much, but please don't be offended if she sends you away. Personally I like to be left alone with my misery, but I know my husband is hovering outside the room just waiting for me to call him and I know he would go to the ends of the earth to help me if he could. He felt rejected at first when I didn't want a massage, or my head rubbed but he understands now. If your wife wants you to fuss over her then thats fine, but if she wants to be alone thats fine too. Just be there as much as she wants because whatever she says - she does need you. More than ever.

Frozen peas are our friends. She may get some relief holding a bag of them to the side of her head or the back of her neck.

Thanks for caring, mate. It matters to us.

I like to be left alone, too.

I am so sorry for you and your wife.  I find the diary to be a really good idea.

I initially thought that pain killers were working for me, but then I figured out that the headaches were simply running their course.

Hang in there.  It can be a rough ride.

Good luck with the headache specialist.

So I have mixed feelings at this point.  I had multiple meetings at work so I was unable to go with her to the doctor's appointment.

She was only able to see the Nurse Practitioner.  (She was offered to wait a bit for the doctor, which she should have done.  But anyway...)

The NP said that it was highly unlikely these were CH, and sounded much more like migraines.  She said something to the effect of..."if you had Cluster Headaches you probably would have hurt/killed yourself by now".  (I wish I was there to hear the comment, because it would have pissed me off)  She asked about the fact that they were happening at 1:30AM every other morning and was told "migraines can do that too".   So first let me ask, is that the case??

So here was her headache schedule.  This is was what she brought the NP.  Also including her pain scale from 1-10.  (Keep in mind, these headaches are new to her so her "10" might be a little bit more overstated than some people's "10".  Although she was crying and moaning with her "10".  (Just for consistency, 1:30AM is technically the date after but I'm putting the date for whatever night it was)

(8)July 4th - 9:30AM after a 5K and 1 beer
(7)July 5th - 7:30PM after 1 glass of wine
(6)July 8th - 1:30AM no alcohol
(6)July 10th - 1:30AM no alcohol
(7)July 12th - 11:30PM after 1 margarita (bad idea)
(10)July 14th - 1:30AM - No alcohol
July 16th????

Any thoughts are appreciated.  I guess we will see what happens tonight.  To me if I can predict a 1:30AM headache then we might need to call back and at least demand to speak to the doc via phone.

Your wife clearly needs to see a doctor as the nurse just does not know what she is talking about with CH. If everyone with CH hurt themselves or killed themselves then there would be nobody here! Although there have been some people who have done which is reflected in the alternative name for CH which is suicide headaches.

One of the diagnostic questions that my neuro asked was that in the middle of a headache if she handed me a loaded gun, would I consider using it. She has found that just about nobody without CH would consider it and those with CH tend to indicate at least the thought of using it for some CHs. This isn't a solid test but along with other diagnostic work it helps rule somethings in or out.

I'm one of those lucky enough to get migraines and CH. However my migraines have never followed a predictable pattern as described by your diary entries. Equally I've never read about migraines following a similar pattern, although that need not be definitive.

Quote:


There are two clear patterns here, the headaches seem to be triggered by alcohol at any time of the day or they happen at 1.30am to a consistent timing. This pattern is pretty common for those with CH where for most alcohol whilst in cycle will bring on a CH plus there are the regular nightly CHs (although people can have multiple ones any time during the day / night).

Your wife really should skip the alcohol. Has she had any in that time period that didn't result in a CH?

Thanks for the responses all.  I am currently sitting in the living room trying desperately to get some work done while my wife is in the bedroom with another headache.  Luckily (knock on wood) this one hasn't been as bad.  It started at 7:45PM.  It started while she was finishing cooking dinner.  10 minutes later, she was on her butt.  The NP had prescribed Imitrex pills for the "migraines", so she immediately took one.  30 minutes later, the pain decreased a bit but did not quite subside.

So the issue is this:  My wife is quite stubborn, and I am a registered hypochondriac.  I have been self-diagnosed with a brain tumor, colon cancer, Sister Mary Joseph Nodule (look it up), Parkinsons, multiple heart attacks, a stomach ulcer, and a daily self-diagnosis of ADD.  (Somehow...I'm still here despite my mostly imaginary ailments)

She isn't the type to get on the internet and do much research.  She definitely is not the discussion forum type.  She is of the opinion that the NP does this for a living, so obviously she knows more than her hypochondriac husband.  (She says this all in a very loving way...thanking me for caring so much but politely declining my diagnosis) 

By the way, the NP's reasoning for diagnosing migraines is as follows:

-She is a woman and the VAST majority of CH sufferers are men. (It seems to me that this pattern is being perpetuated by NP's that won't make a diagnosis for a woman because women get said condition less often...but I digress)

-She has sensitivity to light, nausea, and the headache is one sided which are all "classic migraine symptoms"

-Cluster headaches are so rare in general that the odds of having them are very low. 

Like I said, I disagree with how this was done, but part of me wants to sit and dream for a moment that it might be possible for these to really be migraines, or that they might go away on their own.  However, if they don't, at the very least I can take the smallest comfort that her (possible) late diagnosis would not be life threatening.  Although that comfort is mostly wiped out by seeing her in pain.  I think the key is for her to start doing her own research.  I will be asking her to do that once she is feeling better.

Thanks for the help you guys.  Will keep everyone updated.

Mjedwards409 wrote on Jul 16^th, 2014 at 9:03pm:


If we each had a dollar for every time we heard a medical professional get something wrong around their knowledge of CH many of us would be pretty wealthy.

Have a look at - Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or . It has some pretty interesting statistics.

It took 42% of people eventually diagnosed with CH over 5 years to get a correct diagnosis and for 22% of people 10+ years. You can imagine how many doctors they saw in that time who got it wrong.

Just because CH isn't as common as it is in men doesn't rule out it being what she has. Similarly breast cancer is very rare for men, but we can still get it.

The statistics show 36% of people with CH having nausea, 48% photophobic (light sensitive) and 42% audiophobic (sound sensitive) plus 21% get aura. All of these are "classic" migraine symptoms but it doesn't exclude CH just as it is possible to have migraines without all of these too (I've had hundreds of migraines but aura only twice).

CH only rarely affects both sides of the head, so again that is something that is common with migraine, so it does not rule either out or in.

CH is rare, but not that rare, with around one person in a thousand being affected.

Just because something is rare doesn't mean it can't happen, as any lottery winner will tell you.

Did the NP do any tests or order them? It is normal to have an MRI or CT scan to rule out potential causes of the same symptoms as this will show up things like tumours. There have been several posts to the forums where someone has appeared to have CH symptoms and it has turned to be other things including a slow brain bleed and brain cancers.

I agree with icepick, I too can sound overly serious and angry at times. I get very emotional when I think of people in unnecessary pain. Especially when they do everything they can to get help and it doesn't come. The help is out there and my heart breaks when I hear of people who just can't get it, because of the incompetance of the medical profession. I feel their pain - I was trying unsuccessfully for 5 years to get a diagnosis with no meds.

It impacts seriously on all other areas of life too - work, relationships etc, so even when you are not in a cycle the ramifications of this thing is always there.

Yes it's true CH is very rare, and even rarer in women, but we DO still get it. I don't know how many women come to these boards alone, not to mention other sites and forums.

Your NP doesn't do it for a living - she's a general nurse and quite possibly this is the first potential case of CH she's ever seen. She probably got her info from a short paragraph on the internet that she looked up quicky while your wife was there. That's what they all do. WE are the ones who do it for a living. We take it to work, it's in our marriages and friendships, we get up with it and go to bed with it, even when not in cycle. We are not doctors or even NPs but we are experts on CH. We have to be, because they are not.

If your wife is not the forum type (I wasn't till I came here) at least try to get her to read them, even if she doesn't want to join in. Would she be willing to talk privately? If so send me a PM. I'll even give you my phone number although I'm in the UK so that may not be practical, but the offer is there. She may not trust your advice, or ours, and it's her pain so she must deal with it in a way she's comfortable with, but if she's anything like the rest of us, eventually she'll come round and be open to advice. Most of us would try anything once when that pain comes around.

One last thing. She has been prescribed imitrex pills which is a step in the right direction. If she can get that prescription changed to auto injections it would be much better. As you've discovered already the pill take 30 minutes to get into your system and only reduce the severity of the pain. The injections will abort the worst CH completely in a few minutes.

Tell her we're all thinking of her, and waiting for her to join us.
Take care
Maz.