We are attempting to determine if these are Cluster Headaches or not. Someone mentioned that Cluster Headaches are the only kind that can wake you from sleep... but I'm suspecting that may be from the nickname (Alarm Clock Headaches?)

While I've looked over the Mayo Clinic, the Wikipedia page and others, is there a good place to find a diagnostic list?

Someone mentioned a quiz in another thread. Is there a link?

Side note, the closest doctor (who could diagnose this) is 6-8 hour ride by bus. I live in a rain forest. We want to avoid the trip until we have more complete information.

Sorry for short note, kids are clamoring for help... back soon.

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.
  

Hi and welcome John

It is impossible for us to diagnose if someone has CH as this takes a doctor with the appropriate skills and experience to do so, which normally means a headache specialist.

However it is very obvious that your wife has something wrong with her that is causing pretty severe headaches that needs to be resolved. Even if it isn't CH, it is something that is resulting in a significant impact on her.

From the symptoms there are multiple that are consistent with CH, but there are a huge number of different headache types where many of them also apply. Part of the diagnostic process is not just matching symptoms but ruling out all other possible causes (which makes it difficult to do).

One symptom confused me which was around Maxalt making it much worse. This isn't a common thing to happen with CH.

On the duration, single stabs are unlikely to be CH, but there are other headache types that can be of a similar short duration. It's also possible for someone to have multiple headache types, which again complicates diagnosis and treatment.

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. Do note that the duration min / max values are not absolute, so a 4 hour headache would be uncommon, but it does not mean it can not be CH.

That site also has the definitions and diagnostic criteria for all the other headache types.

The link that John couldn't post is START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE. From reading part of the site it is clear that she is no stranger to pain, so the fact that these headaches are much worse is a strong indicator that they need attention.

Whilst it is clear that the logistics of getting to see a doctor make the trip one that you don't make lightly, I'd strongly encourage you to do so.

I'd ensure that the doctor you'd see really does have the right skills and experience. I'd also prepare as much as you can for the appointment. I'd write down all you want to cover prior to the appointment, covering symptoms plus all the questions you want to ask. Do take notes during the appointment and tick off things so you know you haven't missed anything.

I really hope that you get this resolved soon as it is clear from what you have described that she is going through a lot at the moment. Do keep us updated on how you get on.

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

Hoppy wrote on Mar 21^st, 2017 at 5:18pm:

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

I feel a bit like an idiot but I don't see the link on the left of the page. Could I be using a different theme or perhaps I'm just too stressed out to see it?  Do you have a direct link to it? Sorry.  :-/

John,

Here it is:

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

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.

Peter510 wrote on Mar 21^st, 2017 at 8:32pm:

John, Here it is: 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.

Thank you Peter.

We live in a third world country and in very short notice my wife and I will have researched more information on Cluster Headaches than anyone in this country. The price for a trip to the city, plus an appointment, plus an MRI or CT are prohibitive (although perhaps we could do a GoFundMe or something...)

We live simply. We live in a jungle. If I told you the percentage of our income that this internet connection is costing me you'd probably spit out your drink.

Our hope is to find something to allow for an easier pain management. She understands pain all too well. Nothing, so far, has worked except one herbal remedy that I'll talk about later.

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.

Brian, thank you!

I love my wife and it breaks my heart to see her in such pain. I'm happy to find a community that understands pain and doesn't do all the questioning and blaming you get from family and some "friends". I'm sure some of you know the drill.

I'll keep digging. She's a much better researcher than me, but right now the headaches are affecting her vision so I'm up making the rounds for her. She has an account she made here, but I don't recall what it is. At some point, I'm sure she'll jump into this thread, perhaps with better, more detailed information.

Thanks to everyone, you have all been great! :)

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.

The quiz has a link for another 30 question quiz at the bottom that should either be deleted or fixed. The link is dead (404).

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.

Mike NZ wrote on Mar 22^nd, 2017 at 5:43pm:

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.

I'm in Costa Rica.

My wife already has a brain tumor, but it's not located anywhere near the trigeminal nerve (not that this discounts the possibility that the headaches are or are not related to the tumor, just that we do know some other symptoms that are related, like olfactory hallucinations. The tumor is likely caused by the EDS and is likely collagen mass, but this is unconfirmable because of the location and size (aprox. two grains of rice in size.)

That said, we rule nothing out, we are investigating and the investigation has lead one path here. That doesn't preclude the other paths we are looking at, but this is currently our strongest bias based on the evidence so far.

Thanks again.

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 : /)

Hola Aggie and John,

So much for worry about more serious neurological conditions...  Please PM me your full name and postal address there in Costa Rica and I'll have the essential supplements sent to you.

Take care,

V/R, Batch