Good afternoon all, My name is Dan and am currently undergoing diagnosis for a condition i am experiencing. Randomly for roughly the past few years(it is quite new). I have been experiencing a intense pain behind the right eye that if I had to make a guess is directly on my optic nerve. This pain lasts consistently from a week and as long as 2 weeks and 4 days. My eye will tend to get somewhat bloodshot (think of waking up in the morning with the groggy look) and at times can cause hyper light sensitivity (not often) and tearing. I AM am to take high doses of Ibuprofen (800 mg doses) to control the pain every 6-8hrs. If i do not take a dose before bed I will be woken up by this pain and be force to re dose in order to find some peace. Lastly when these episodes are happening I never have the pain desist and restart, it may seen like it lessens briefly but it never does stop and restart.

Now I have been to the optometrist 3 times in the past 4 years and all the basic tests have come up clean. I have also had my eye viewed by an Ophthalmologist who basically did the same tests as the optometrist and then wrote me off to see a "nero ophthalmologist" for a headache clinic as I feel i was given a 5 second it's a CH not a problem with the eye.

I guess my question is based on the collective experience you all have with cluster headaches do you think in your humble opinion my issue falls under what is classified as a cluster headache? I of course still am going in yet again to discuss further tests i can do to try and figure it out while i wait for the year + long wait to see an headache doctor (GO GO CANADA HEALTH CARE) but I am sick of waiting to see that doctor and prefer to be proactive with my own health and not "wait" to see one specialist who may turn around and say no you are right it is not a cluster headache.

Please feel free to ask more related questions i have failed to provide information on and I will respond timely as I figure this is the type of place that may be able to at least help me understand if what i am experiencing is a cluster headache.

Hi Dan, and welcome.

I agree with bejeeber in that some of what you are experiencing sounds like it could be CH, but others are not usually typical of CH.

Please look on the left side of your screen to "cluster quiz" (4th down).  Take the quiz and let us know how you come out.

Also print out the information on Oxygen, and visit the OUCH website for more information.  Print out all you can and take it to your regular GP and see if he/she will read it over and hopefully get you on a good preventative med, as well as a good abortive.  But, by all means, keep trying to get in to see a good neurologist, or headache specialist for an MRI to rule out something that could be much more serious than CH.

This is the best site you could have found for information on CH.  Read, Read, then Read some more.  Ask any questions you might have, someone here will always be available to try to answer it or give you good advice.

Sandy

I'm sorry you have to wait so long to see a specialist.

Definitely does not sound like cluster headache.

Oh that ibuprophen could kill the pain of a cluster!!!!!!

1.  Your use of ibuprofen sounds like it may be close to dangerous.  I know 800 mg 3 times a day is a prescription dose, but if you are taking every 6 hours, you may be hitting dangerous levels.

2.  Could you describe the pain? 

3.  Have you tried any migraine meds?  Tylenol?  Any other things that help you?

I am also inclined to think it may not be cluster headaches, but it could be.  Any other information you have might be helpful

Hello all, I thought i would give an update, I went and saw my Family doctor again to discuss other options as well as went back to see my optometrist for another check up.

First my Family doctor. After discussing with her the reoccurred attack although spaced out much farther apart then the original attacks i had earlier this year (was originally suspecting aspartame as I was drinking way too much diet soda) I suggested the possibility of getting an MRI and she concluded that based on the results of my Cat scan I had recently done there was no evidence to support doing a MRI however, I was referred to an ophthalmologist who was supposed to refer me to a Nero ophthalmologist, to which she suggested that if in the event a MRI is required it will be more suitable to have the Nero one do so as the turn around time to get it done will be a week or so compared to over a year if she refers me as she is not a specialist.

I discussed methods of pain management and advised her that I had adverse effects from Percacet and Tramacet that she had given me during one episode where I was unable to manage the pain through Ibuprofen. And she gave me some T3 with Codeine and suggested that if the pain gets that bad again try those and of course rebook with her if those are not helpful and we can try other stuff.

Lastly she is referring me to the local head ache clinic as well but advised me due to the shortage of Neurologists here in Calgary, Alberta (question answer for my location as someone asked before). There will be a wait time.

My appointment with the Optometrist went quite well, both scans of my eye, field vision testing, peripheral vision testing and color testing all passed with flying colors and my eye sight is in exceptional health ruling out my prior concerns of being eye related. he also suggested that based on the test results and other patients he has also had with similar issues that he thinks in his "opinion" that my original diagnosis of CH is a lot more likely. But of course if any problems with my vision occur to rebook and have it checked out. 

I completed the online test for CH and did not quite fall into the exact category of CH but reviewing all of my past history with it I need to re clarify some of my statement. The pain has in the past occurred in both eyes not just my right, although this year it has primarily been in my right eye. The pain is not consistent as I thought, by this i mean there is a consistent pain but the intensity does fluctuate. As in it comes on slowly and mildly then has a peak point then reverts back to a much less painful state. Which is where I am today. Treating the pain with 1-2 400MG ibuprofen which completely mask the pain.

The more i review my own past history and compare with other tests being run I too am starting to agree with the possibility of it being CH although a much milder version to what i am reading on here. I should be thankful that it is a manageable pain and not a brain tumor or something worse! I will continue testing and post an update as to when I have some additional info. For the time being all i can do is wait!

I also checked out occipital neuralgia and also hemacrania continua they do kind of fit however not quite a full match. But I will definitely discuss them with the specialist when I see him as a possible option.

If there is any other questions I may have missed please let me know otherwise I guess i'll keep reading around here for more info! Cheers and thank you for all the responses!

Contrary to my buds, light and sound sensitivity are not uncommon with CH. Several of us have mentioned our need to isolate ourselves in a dark, quiet area during an attack.

The dosing of any OTC pain med carries a significiant risk of rebound headaches. The general rule is using anything 3-4X a week increases the risk and rebounds cannot be distinguished from a primary headache (the REAL thing) without getting off the suspect med.

My experience with the eye M.D. mirrors yours: good exams and no findings. Subsequently, I mentioned to him that I had CH and he admitted knowing nothing about them.

The potential for some underlying problem is not great but current practice in the U.S. is to get a head scan to rule out some structural problem. It is not wise to use any med which can totally suppress/control your pain until you have a good diagnosis. Hiding pain from the doc is to deny him clinical data he needs. Which means--get on somone's waiting list even if it means fibbing. I suspect that mentioning "headache" as the presenting problem won't get a much attention as focusing on "severe eye pain" which may hide a growth, etc.
=========

Looks like you were posting the preceding message even as I was typing mine!

So, if scans have ruled out structural brain issues, the puzzle demands the more sharply working with a headache specialist. Our collective experience is that many neurologists don't have the skill/training to work with complex headache disorders.