Hello,

I'm new here from Cincinnati.  I'm very sorry to learn what some of you are going through.  I've done some research on my ailment to find that the closest thing I can come up with is CH.  Not sure though so here it goes...

I'm a 41 year old male.  Never really had problems in the past with headaches, nothing severe enough to mention anyway.  About three weeks ago it all started.  I was sitting at the computer when I noticed a sudden pain behind my left eye.  It seems like it stemmed from eye strain and/or bad posture or possibly stress.  I've always had stiffness in the neck area for whatever reason.  The pain was pretty severe, for me anyway.  It felt like I ate ice cream or a milkshake too fast and I got a freezer burn behind my left eye, but a little worse.  In addition, my sinuses flared up, left side worse than the right side, runny nose on left side only, my left temple flared up and I could feel my heartbeat in the temple area, my forehead will flare up a little on the left side but not too much-mainly behind my eye and in the eye area, tears running from my left eye only, left eye gets very bloodshot and swollen.  The pain begins in the upper rear portion of my left eye and continues all the way down past my left ear, down the left side of my jaw to my neck.  My left cheek will feel and appear a little swollen and it made me wonder if I have a dental problem.  I just visited the dentist a few months ago though, no problems.  Seems like the pain even went all the way down to the upper middle part of my spine, not sure if it's related or not.  Anyway, these symptoms went away finally without meds after a few hours.  Every day for the next three weeks I came down with the same symptoms like clockwork.  It seems to start at the same time of day, about 2 or 2:30PM.  Each time I will be sitting at the computer, same posture, same monitor, same chair, etc.  I noticed that I will be very sensitive to light, so I would lie down with a black shirt covering my eyes to a little relief, but not a whole lot.  I would never really get comfortable lying down though.  I would twist and turn, move my head from one side to another, use a pillow, lie down with no pillow, all to no avail for the most part.  Noise also seems to make it worse, not really sure.  I noticed that standing up and walking around a little helps some, but not a lot at all.  Overall, the pain is not to the same degree for each episode.  Some episodes were much worse than others, but the past few episodes were more painful and violent and it seems to be getting worse overall.  One thing that doesn't seem to be a common trait with CH though is that my episodes last much longer than usual.  Some episodes may last a few hours, today's episode lasted about 8 hours.  5-8 hours is most common for me, but there were a couple of episodes that didn't go away at all until the next morning.  Tonight my symptoms were relieved a lot with Excedrin migraine medication, but the whole left side of my face still feels a little flared up and I'm afraid that when the Excedrin wears off it will return in my sleep or tomorrow most likely.  I remember waking up in the middle of the night with these symptoms only a few times, so it's mostly during the day.  I also noticed profuse sweating at night over the past few weeks, whether I had the symptoms at the time or not. 

Other items of wonder (maybe related maybe not): 
-Alcohol seems to flare up a headache, and this started a few years ago.  It's much worse now. 
-I smoke daily and I've noticed that smoking a cigarette during an attack intensifies the pain and the flare up of my sinuses with a shot of pain that shoots up my left nostril every once in a while.
-I used to drink coffee daily until about two months ago, two large cups each morning.  I've pretty much cut out caffeine altogether since.  Maybe a coke here or there.
-Left eyes seems to be bloodshot and a little swollen on a pretty constant basis.  It's irritated most of the time with dry eye, that sort of thing.  This started about 4 or 5 years ago.


None of this is normal for me.  I haven't been to the doctor and some of what I've read makes me wonder if a doctor will only rule in or out a major concern like a tumor or something.  The symptoms are beginning to effect my daily routine and my life altogether.  I can't imagine this getting any worse or having to go through this on a consistent basis.  If it gets any worse then I may be banging my head against the wall like most of you.  I hope it's not the beginning of a really bad omen.  I truly sympathize for any of you who have to go through this type of ailment consistently, especially with the lack of FDA support on certain things.  Any insight that some of you may be willing to share will be greatly appreciated.  A trip to the Dr. is definitely in order... 

Thanks for your time and sorry for the bible.  God bless! 
Dave

Hey Dave,

Sorry you're having bad headaches.  Some of the symptoms you've described fit the cluster headache syndrome and a few don't.

We're not doctors here at CH.com and the few that are would never make a diagnosis over the Internet. 

Your best course of action is to see your primary care provider ASAP and present the list of symptoms you posted here. 

Most PCPs worth their salt will try to get you a consult with a neurologist specializing in the treatment of headaches.

Cluster headaches require a differential diagnosis where your physician will test for and eliminate all other possible conditions before making a diagnosis.  CT Scans and MRIs are par for the course to make sure there's nothing abnormal in your squash.

If your PCP decides to cowboy the situation and starts prescribing med's for your headaches, the following link will take you to the National Guideline Clearing House for standards of care in treating cluster headache and other trigeminal-autonomic cephalalgias:

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

I've met with three of the neurologists on the EFNS task force that developed this guideline.  They are among the top neurologists in the world that treat patients suffering from cluster headache.

Take care and don't wait... See your PCP ASAP!

V/R, Batch

If you were 10+ years older I'd be ringing this bell a bit louder but--with middle age the odds increase that new headache disorders can signal problems which can be significant.

Headache is a symptom, not a disorder, and so it's helpful to try and identify the source. There are a number of disorders which mimic cluster but which are much more serious. Hence, the need to find a headache doc who both appreciates this reality and can do a good work-up.

Unfortunately, most docs, even general neurologists, don't get much education in headache disorders and many have no working experience which gives them skill and insight.

So, if you have the option:

LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. 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.

3.  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.

4. START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE; On-line screen to find a physician.

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

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

Welcome to the board, the early stages of diagnosis can really suck. Involves hurting a lot while you're supposed to exercise patience, while the docs try to sort you out! You've been given excellent advice so I'll just echo it. A "headache specialist neuro" is your best shot at an accurate diagnosis, and an effective treatment regimen.

If it does turn out to be CH, and a lot of what you describe does sound like CH, don't lose this page! Good luck on your diagnostic journey.

Joe

A trip to the Dr. is in order.  You may be right, it could be the symptom of something major.  Some of my symptoms are a bit off to truly fit CH but I wanted to run it by you anyway just for a little insight.  I'm certainly not looking for a diagnosis.  I'm very glad I came to this board though because there is a lot of good stuff on here.  I don't like visiting the Dr. and odds are I would only visit my GP and call it good if he tried to play super doc and decide not send me to a neurologist himself.  I feel better prepared and educated already and I just started researching and reading up on this board.  Not to mention I didn't even think of some of my symptoms until I read about some of the experiences here and online.

I will be back, hopefully with good news.  I truly appreciate the insight and I wish each and every one of you the very best of luck.  You are all in my prayers. 

Quote:

A trip to the Dr. is definitely in order...

Sounds like CH to me, but what do I know? Get to the doc if they will not diagnose the condition, ask for a referral to the headache specialist or neurologist for diagnosis.
the bb