I'm replying to my own original post to add information that may be helpful.

I just found this link and it was a wonderful resource of information. The best I've found yet:

nytimes dot com/health/guides/disease/cluster-headaches/print.html

Symptoms my wife has related to me so far:

• Stabbing pain headache worse than anything she's every felt. "Like childbirth in my brain." She had migraines as a child (age 7).
• Woken from sleep crying and in despair from pain.
• Unilateral (Primarily it happens on her left side.), although it has flipped sides three times but only once for a full attack, the other two were preliminary stabs.
• Sensitivity to sounds and light.
• No pain killers have helped. She has some pretty strong ones because she suffers from EDS [ehlers-danlos  dot com/what-is-eds/]
• Feels like she needs to put her head in a vice or crush her head. Or smash fist into eye socket.
• Between 2-6 times a day. One really bad one and several lower level stabs for a few minutes before.
• Maxalt made it much worse.
• Out of 7 or 8 weeks, it skipped the last two days. She originally assumed it was the flu.
• Major attack last 2.5-3 hours with outliers at 4 hours. Preliminary attacks last from a single stab to 30 minutes. Average 3-4 preliminary attacks before primary attack.
• Less organized when they started, however now she notices a pattern. For 10 days it came in the afternoon, currently and previously a night cycle starting at 11:30, 1:30 or 3:30
• Intensifies smells.
• Ice applied on cheekbone or eye socket is the only feedback that seems to cause distraction or relief during attacks.
• Can't lay down, just sitting up, during attack. Can walk but she keeps her eye closed so she avoids walking.
• Makes teeth hurt.

John wrote, Someone mentioned a quiz in another thread. Is there a link?
John, the link is to your left on this page. But, its most important your wife gets to see a headache specialist to rule out any other nasties.

Hoppy

John,

Here it is:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Mike and Hoppy are right. Your wife really needs to see a a Neurologist specialising in Primary Headaches to be sure of a correct diagnosis and treatment.

Let us know how you get on.

Peter.

G'day John, welcome, and if you look to the top-right corner of your screen you'll see our ch.com logo. (Looks remarkably like our WebMaster!)

Click on the logo, it'll refresh the page, and with luck you'll see a list of buttons down the left hand side of your screen starting with New Visitors, Medical Info and so on, and there's a wealth of information that awaits you.

If that doesn't work just say so because there's another couple of tricks that might.

Otherwise just keep asking questions and we'll keep answering them. Ya see, we really care about someone who is helping another headache sufferer. You're what we call a Supporter and we reckon you're pure gold.

Tropically yours,

Brian down under.

My wife just woke and I asked her the questions on the quiz.

1-9, she answered "no" with the exception of #4, but I'm assuming that has more to do with her introverted nature and not as a result of the pain.

10-16 were "yes" with an exception regarding #13 drooping eyelids, which she has not attempted to observe.

We are starting to research specialist here, but they are uncommon to put it mildly.

Hi John

When you and your wife are doing research do not focus exclusively on CH alone. Whilst there is a good overlap between the symptoms described and CH, there are multiple other causes of the same symptoms which are not caused by CH, which can include things like brain tumors.

Whilst doing research online can educate you a lot about things like CH, it is essential to get a confirmed diagnosis from someone with the appropriate skills and experience so that the right treatment can be used.

Can you tell us which country it is? There are people on these forums from all over the world and there may be someone who can suggest a local specialist and give other local knowledge.

Buenas from Costa Rica!

I'm John's wife and I wanted to thank all of you, including my husband,  for your help.

We live on the Caribbean coast a few km from Panama in a wildlife refuge.   I'm no stranger to pain as mentioned: my EDS is a combination of classical and arthrochalasia types. He didn't mention i also gave birth to our three children in a pool at home with him catching the baby.  Hardcore

I have annual echocardiograms for my ehlers-danlos and supposed to see my rheumatologist  every few months,  but in truth i haven't been to either since last June and I'm overdue. It's a money thing.  I have mild osteogenesis imperfecta, and to give you an idea of the facilities available here,  i get x-rays done at the veterinarian. We're in the CCSS (Caja- the national healthcare). It takes about 4 years for an MRI.  We had to pay $3000 to have my spine imaged last summer (5 or 6 herniated discs were discovered along with the tumor that is on every single imaging I've ever had done.  This one is a hemangioma on my thoravic spine, fairly large. I don't know why i have tumors every where, but am Thankful they are benign so far).   We have our own business with high and low seasons.  Average income in CR is about 6,000$ a year to give you an idea.

I smashed my eye a bit too hard a few days ago,  i suppose,  as a bunch of bulging veins felt like eyelashes for 2 days.  I've detached a retina before,  so i have to be careful about the urge to hurt my face.

I've found that using extra pillows to elevate my head in bed works.  I came up with that idea because during an attack it hurts so much more when i lay down.  But then i get it later in the afternoon.  My sleep is seriously messed up and I'm falling asleep every afternoon because of the sleep interruptions- i have to choose killer headache or herniated disc shooting pain from the pillows. I can't win. 

My brain tumor is mid-brain in the canal where CSF (Cerebro-spinal fluid)  should be, so i thought low Csf headaches would be the answer but the description doesn't fit at all.  The trigeminal nerve is the primary source of pain.  I suspect cluster headaches or trigeminal neuralgia. As mentioned though,  there are other rare short duration headache attacks that need to be sorted for a correct diagnosis.  Unfortunately, i feel in my gut that this is it.

Again,  thank you and if you have any questions or comments I'm really very thankful to have people to talk to.

Much love from 9°N
(Sorry for the poor typing  - i can only use my right hand : /)