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31 Jan, 2011 - 9:42 pm

Hi all,

I stumbled upon your shores in the effort to, well, understand if the headaches I've been having are these suckers or not. I apologise in advance for the long post. I don't even have to type much to know this is gonna be long

Just after Christmas, I had a headache above my left eye that stood out from headaches I'd had previously. I'm not stranger to all sorts of headaches, being mostly averse to drinking enough water I do not, however, suffer from anything even remotely like migraines (well, haven't to date that I can recall). Anyway, this headache stood out and I can remember having it.

A couple of days later, the sore neck I'd been developing (on the right side, down the shoulder) was getting worse and the now recurring headaches above my left eye were also getting worse. I saw a physio a few times a week to get my neck back on track and it's still quite sore on manipulation (just tension plus I sit at a desk all day) but I have full movement day to day, pain free.

Within a couple of visits to the physio for my neck, I noticed my left eye was sore to move side to side. Not unbearable, just annoying right at the edges, like I imagine eye strain would feel. I've had that pain before and it's gone away after a few days - never more than an annoyance really. This time, it just kept getting worse.

So here we are a month later and I'm now in intense pain that is only even remotely manageable with a *strict* regime of Panadol and Nurofen. Still nothing really touches the pain in my eye, but I can keep the headaches at bay using these. For reference, I can't take codeine, morphine and, based on my experience over the weekend, tramadol is also on the no-go list. Panadol and Nurofen are really all I have.

Up until today, I was sure I had a constant headache and eyeache. Today, I'm not so sure; I definitely have a constant eye-ache but the headache only comes when I try to move my eye too much. I've had 10/10 headaches and 10/10 eye pain if I can't/don't have painkillers.

The eye pain feels like I've been socked a few times in the eye. Moving my eye feels like I'm just short of tearing something behind my eye. The pressure of closing my eyelid is uncomfortable and the pressure of closing my eyelid tight is unbearable. Colours are the same, but intensity is .. lacking? I also feel like things take longer to process through that eye - like I can see them but it takes me a split second longer to recognise them. My vision itself is unaffected according to an optometrist and an ophthalmologist gave me the all clear today after a ct scan, visual field test and blood tests. There's nothing wrong with my eye

My head is sore from my eyebrow up to halfway toward the back of my head. It radiates down to the temple and sometimes to the back of my head, right at the bottom. As I said, I don't seem to have headaches all the time but when I get them and can't keep them under control, I just feel like I need to hold my head together.

It's not a tight feeling like a tension headache, it's not across my forehead like a tension headache, I don't feel like light is giving me a hard time (it is annoying because looking through my left eye is like looking through clear cellophane!), I'm not fussed about noise beyond my patience being too short to tolerate annoying noise. I feel worse when I lie down, so the standard response for a migraine sufferer to be in a dark room with no noise, sleeping, is not my favourite thought to manage it.

My concentration is out the window, it hurts more when I lie on the left side of my head and I've woken up most days with intense pain in my eye at 5am, to the point where I've resorted to sleeping with a bottle of water by the bed and enough nurofen and panadol to get me through the night. Other than 5am, I don't feel like it's sudden - it's kind of niggling pain in my head, then I'll just realise it hurts. Maybe after a month I'm just used to it

I've been to the hospital; and been sent home with the diagnosis of "migraine" and a box of nurofen. Helpful. I feel nauseous and dizzy when the pain is bad, but not otherwise. My blood pressure is significantly higher than usual, though my GP isn't sure if it's a cause or symptom yet.

I'm booked into the Headache Clinic here in Adelaide (Malvern actually) tomorrow afternoon; after 5 appointments, they claim to be able to confirm whether it's the result of a neck disorder and if not, back to the GP I go.

Does anyone have any experience with the Headache Clinic? Does anyone have a sore neck that's become a cluster headache? Does anyone have any idea if mine sounds like yours? Does anyone have any suggestions for non-opiate pain relief for my eye which is apparently the root of all evil? (maybe opiate pain relief is the root of all evil *laugh*). Can anyone help?

Sorry again for the long post .. I'm tired of the pain and I'm tired of a month of popping painkillers just to function

Thanks.

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31 Jan, 2011 - 9:57 pm

Oh, forgot to mention .. the pain is getting worse (painkillers aside) not petering out and not remaining constant. It started tolerable and I needed maybe a dose of painkillers in the morning, but that was it .. now I need painkillers as soon as I get up so they kick in before I get into the car because just looking to the mirrors on each side of the car is excruciating without painkillers.

In the last week, my left eye has also started tearing up to the point of having a constant white tear stain on the outer edge of my eye some days The days I wake up at 5am with pain, after I finally get back to sleep a couple of hours later, I wake again with the stuffy nostril that is mentioned. Are these two symptoms (eye and nostril) almost defining on their own if you have a headache that starts behind an eye?

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01 Feb, 2011 - 5:22 pm

Hi Overthehedge,
Try 900mg of "aspro clear" from the supermarket, if you are able to take aspirin. I have had CH for 30 years and this soluble Aspirin can be very effective, much more so than paracetamol or opiods (which won't touch CH) or NSAIDs like Nurofen.

I am not a Doctor, but your symptoms sound vague in relation to CH to me. I cannot attempt to accurately deduce what is going on from your reported symptoms. This is a job for the specialists.
It just doesn't seem to fit the bill for CH. It doesn't sound right to me - but I would not rule out CH either. Your body can't read the textbooks - every individual case should be assessed on it's own merits and presenting or reported symptoms.

I have had many neck problems for years - but there is NO correlation between my neck pain and my particular CH condition. 30 years of CH and 10 years (on and off) of physio proves this.

It sounds to me more like SUNCTS possibly or another type of headache: http://en.wikipedia.org/wiki/SUNCT

You need to go into more detail about the symptoms at onset of an attack, severity, duration and frequency before anyone will suggest that you may have CH.

There is a Headache specialist in the Royal Adelaide Hospital's - Pain Management Unit.
One of the best. He can investigate and figure out what type of headache you have.
It takes a long time on the waiting list to get in there, for public patients like me 15-18 months.

This may not be helpful or encouraging, but I saw a list once published by "The Migraine Society?" (I think) which stated that there were over 1000 different types of headache. But with a good specialist, you should be able to narrow it down fairly quickly. Don't worry, it's not like finding a needle in a haystack. There are diagnostic procedures to help narrow it down.

It just doesn't sound like CH to me.

If the Blood Pressure is high, you may be able to kill two birds with one stone and try Atenolol, Diltiazem or Verapamil. Some lower blood pressure and all are used in some forms of headache treatment.

Remember, seek appropriate medical advice. I am not a Doctor.

I hope this helps you. Be careful driving mate!!!

Cheers, Ben.

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01 Feb, 2011 - 6:13 pm

Thanks for the info, Ben - much appreciated and of course, certainly doesn't substitute my efforts to find out what's going on SUNCT is certainly another interesting one - kind of similar to CH but a lot more about the eye. As you say, with a good specialist, it shouldn't be too hard to narrow down a headache that comes with excruciating orbital pain, surely?

My appointment at the headache clinic was today and I think we've categorically ruled out migraine, likely ruled out tension headache and, given the course of questioning, maybe I explained it better there, but we've not yet ruled out CH - they certainly weren't able to replicate the headache by anything they did with my neck.

Their recommendation was to get onto a neurologist sooner rather than later, which I'll attempt to organise a referral for tomorrow .. and then wait

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02 Feb, 2011 - 2:24 pm

I forgot to mention that a Head CT does not include a sinus CT. I had a referral to an Ear, Nose and Throat (ENT) clinic where a routine sinus CT was commissioned for me as an investigative avenue into the cause of my Headaches. Purely routine, just to rule out any possible abnormalities. Everyone thought it would come back clear.

However, it showed that I had a "Mucus retention cyst" in my sinus in an area called the eustachian tube: http://en.wikipedia.org/wiki/Eustachian_tube
This caused sinus headaches and tearing in one eye, which only served to mask and further complicate my long time CH diagnosis and treatment...
The cyst became painful, infected and blocked my right sinus passages completely. It was reduced in size by a course of antibiotics and the use of Rhinocort.

Rhinocort - an over the counter nasal spray mave offer you some relief from sinus and tearing symptoms. It is low dosage Cortesone (a steroid) in liquid form. Whilst it has zero effect on headaches themselves, it may offer your condition some symptomatic relief.

My guess is that you are at the point where you are willing to try any options?

Once again, check with a pharmacist before using rhinocort, especially if you alreadty have sinus bleeding or are already on Cortesone based treatments (Prednisolone etc.).

Good luck with it.

Cheers, Ben.

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02 Feb, 2011 - 4:43 pm

Another possibility as posted by Barry:

http://www.healthline.com/galecontent/paroxysmal-hemicrania

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02 Feb, 2011 - 6:40 pm

Hi Guys,

Welcome to you both! I'm sorry you are suffering!

Ben has given you some great advice and when you are suffering and desperate almost anything is worth a try. The only things that I would also recommend at this stage would be to keep a very detailed headache diary, the more info that you can provide the better and the best person to advocate in finding a cause and manageable treatment plan is you. Also perhaps when you get an attack you could try deep breathing cold air ( like Roger does with the car air-conditioner ), it may help a little.

I would have to say that I would agree that from your post CH may not be your diagnosis, but I'm not a doctor either, so please keep up the fight and search for help with this, information really is power!

Goodluck.

Regards Shell

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04 Feb, 2011 - 3:03 pm

Hi Overthehedge
The advice give by Ben and Shell as always is sound.

At this point I am always a little amazed at how we seem to be struggling to be finding a diagnosis for our problems.
I can only assume that you have a "guiding" doctor who is helping you through all of this???

ah! have just picked up that the headache clinic have recommended that you consult with a neurologist! That was going to be my suggestion. Now what you need to do is what Shell says which is to go along with your headache diary which will give the neuro a full picture of what is going on ie when started, what they are like etc.

The internet is a wonderful source of information and information is power, but dont let it over power you.

Sending you a private message.
Cheers Heather

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12 Feb, 2011 - 7:49 pm

Thanks for your advice, guys.

I think it's safe to say I'm not having cluster headaches now that the profile of my pain has changed completely. I go most days without more than a vague ache in my head and for the last two days I've managed to move my left eye a little more than normal before I hit the pain barrier. I have lost much of the vision in my left eye in exchange for the movement and at this stage, I'm patiently waiting to hear when my neuro appointment is.

On the bright side, I've had limited success with the Headache Clnic treatment in that I had intense pain replicated once by manipulating C2-C3 in my neck. Whilst they're not convinced that they're doing anything for it by such limited success, I'm sure fixing odd things in my neck will fix other things if not a headache.

On that note, as I said, thanks for your advice and, since I am fairly sure that your collective advice has been correct with respect to a guess of what's going on, I'll leave you guys to it. I hope each and every one of you has some level of success in the treatment and management of the terror of your suffering.

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