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 :)

We're here for ya Cerumen! (interesting choice of names - I'd like to know the back story!)

I (and I'm sure many others on this board) am going to recommend reading the left sidebar information about Oxygen (highlighted in yellow). It is of tremendous help!

Glad you found a nurse practitioner who is in the know. I also have relied on Imitrex (nasal spray), many here will recommend the injections and using them in a certain way to get more out of a single injector, but really, O2 is the way to go.

Pull up a comfy chair and pour your choice of non-alcoholic beverage (alcohol can trigger these) and see who weighs in and what wisdom they can impart!
-Gary

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.  ;D

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

Welcome to the board, read this link! It details the how to for oxygen therapy. I'm a 33 year episodic sufferer, oxygen has almost eliminated my use of imitrex. Like you, I hate the snakes up the back, tense chest, feeling of imitrex. But would take it in a heart beat over a CH attack! ;D

Now I feel an attack coming on, start huffing the 02, 6-8 minutes later I'm pain free. It's that easy. (No I don't make any money hawking 02! ;))

Spend a little time on this board and in short order you'll know more about treating CH then 90% of  the doc's you ever see. Welcome home.

Joe

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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.
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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.

Good advice on O2 and finding a headache specialist in your area. I think we've all gone through times when one specialist or another (ear, nose, throat, dentician, optometrist) decided to treat us for what ended up being CHs. I know in the beginning, antihistamines helped me, but no more. I do use nasal spray from time to time and sometimes that seems to help a bit. Can't beat the tried and true prevents and abortives, though. Enjoy reading and arming yourself against the beast. Blessings. lance

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!
We also share in your relief at finding encouragement and very glad you have found someone who
is 'switched on' to CH....

It should not be a case of luck and I am sure together on here, we can help accelerate the learning curve in the medical profession... I am sure every single person that joins here is a result of 'the word' spreading...
If you tell one person about what you have found here, it will benefit the whole!

It's a great feeling isn't it Cerumem?

Respect and Good luck

Gary

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!!