Greetings I am glad to have found this site!

My story~

I have had "allergy" attacks since junior high school. These have always only occurred on the left side of my head (left eye and left nostril) accompanied by a dull and unrelenting headache and extreme anxiousness. Smells (perfumes, chemicals, plastic smells) in particular seem to trigger my attacks...

Over the last 25 years my "allergy" treatments have been a variety of antihistamines and extensive allergy testing...The only thing I ever found relief from were those medicines that made me sleepy. Essentially~ I was taking enough to make me sleep through what seemed like a horrible one sided allergy attack. For the last couple of years I found no relief from Benedryl and started taking Doxylamine Sodium (a sleeping pill that is used abroad to treat allergies). Then it quit working... about 6 months ago ... and my headaches and attacks became very frequent.

I started to do research on "unilateral allergies" and found out about cluster headaches. I realized that the evening prior to an attack I would wake up in the middle of the night with a blinding headache.... later in the morning (typically 10 am) I would have an attack. My attacks are also preceded by a sensation of worms crawling in my left sinus, then my eye starts watering, and I start sneezing...then the anxiousness starts.

It has been something that people who don't see me when I have one cannot comprehend. They think hay fever when they hear about it...

Finally, my husband made me go to the doctors to try once again to see what is going on. I basically gave up a long time ago on seeing the doctor because they seemed to shrug me off as having sinusitis or whatnot. Unless you see it in action, these attacks can't be appreciated and who is going to throw the kids in the car and hit the road in the midst of an attack to wait in the doctors office for them to "see" the attack....

Finally, I found a nurse practitioner who really seemed to be open to listening and that I felt comfortable trying once again to seek help from. I discussed my exact symptoms with her without detailing what my suspicion was in regards to cluster headaches. She immediately said it sounded like I have cluster headaches and prescribed Imitrex.

The first time I took one I thought it was a fluke that it worked. I thought maybe I wasn't really having an attack. The second time (this week) I took one and again I did not have any of the sinus and eye symptoms. It is a weird feeling as the medicine works that I can't say I enjoy (burning in my head, nausea, fuzzy headedness) but it is preferable to taking umpteen antihistamines and not having them work.

I cannot believe I have dealt with this for so long and may have found a solution at long last... on the internet.

Thanks for listening

Thank you This site is a fountain of info! I have already learned so much. I didn't know about alcohol. I rarely drink but my husband and I started attempting home brewing last November. This fact about alcohol is interesting because my attacks really spiked when we started sampling our product....I hadn't drank anything prior to that in years.

The screen name (cerumen) is because I am an audiologist by profession (worked in ENT offices my whole career -hence all the allergy treatments and testing)... cleaning ear wax has been my life's work LOL. 

Please tell us where you live. Follow the next line to a message which will guide you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you

You can add your location by editing your profile. CP Member --> profile
==============
You may have a good "maybe" diagnosis at this stage but would suggest working with a good headache specialist both to confirm the Dx and to guide your treatment. There are so many types of headache that inappropriate treatment can lead to delays in obtaining good relief.
====
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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

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

Over the years I have found getting help to be a disappointing process. As a woman I really felt like the severity of what I was experiencing was being downplayed or discounted. I finally just resorting to self medicating as best I could because the allergy medicine I kept being prescribed had little impact.

Being a health care professional I tend to only seek help for issues I deem truly serious which made the experience even more frustrating.

I really didn't expect much from this nurse practitioner and only mentioned my increasingly worse "allergies" at a long overdue routine physical. As soon as I described my symptoms she said "cluster headaches" and pulled up all kinds of data to show me. She mentioned o2 and other treatments and seemed to be no stranger to the problem.

I am pretty encouraged at this point for the first time in I can't tell you how long. I now live in a very rural area which really limits the pool of specialists available.

I will be scouring the site for all the information I can!!!!

Hi Cerumen,

So glad you found us and that things are really looking up regarding your ability to fight these attacks back.

Sounds like you were prescribed imitrex pill form. If those become too slow acting for you, as they do for most of us, the injections can practically be an iron clad guaranteed abort and fast acting. Some folks have problems with rebounds and stuff with imitrex though, so that's why O2 has become so extremely popular around here as a first choice abortive.

Many women have had a hard time getting diagnosed with CH due to clueless doctors thinking only men get them - good thing you encountered that clued in nurse practioner!!