Hello my name is Chris and i am from Western NY. I am 28 years old and i have been dealing with these for about 9 years now. I still remember the first attack i ever had and how they never stopped after that. I have been diagnosed with Chronic Cluster Headaches. Mine have always been the same never changing. I would always have 1 per day lasting approx 30 - 45 min and that was it, until recently. The last few days have been horrible (As i am sure most of you can understand). I have been getting approx 5- 7 per day and lasting anywhere from 20 min to 4.5 hours in which i took my imitrex stat dose for the first time ever. I have always been able to work through them on my own for the most part sometimes i would use my oxygen if i was home and able to. The weird thing is that until recently i have never had more then occasional day where i did not have 1 attack. About a week and a half prior i had none, so i went about 9 days without having a single attack. Oxygen does not seem to help most of the time over the last few days but sometimes it does. One thing that i have noticed over the last few days is normally when i have a attack i always tend to put pressure with my head on the temple. I could always feel the hardness of my vein running through there, but not anymore.

Well anyways thank you everyone for letting me talk to it out..

Hey Chris, glad you found your way here. Reading your post, it left me with a couple of questions. Who diagnosed you with CHs? What prevents were you given? What doses? What flow rate are you using for O2, masks, that kind of thing? Are you aware of the current abortives besides O2? I only ask so we can help you more. If you'd rather not share, welcome anyway! You'll always find an ear here. Blessings! lance

Working with a headache specialist would be my first choice for you. This is an area of such complexity that the average doc rarely has the skill/experience we often need.

But, broadly speaking, variation in the experience of CH is not uncommon. Subtle variation in degree, location, duration, etc. is surely common in the early period of someone developing CH but the old timers can also tell you stories about changes which occur with aging.
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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.

wimsey1 wrote on Oct 15^th, 2010 at 7:24am:

Hey Chris, glad you found your way here. Reading your post, it left me with a couple of questions. Who diagnosed you with CHs? What prevents were you given? What doses? What flow rate are you using for O2, masks, that kind of thing? Are you aware of the current abortives besides O2? I only ask so we can help you more. If you'd rather not share, welcome anyway! You'll always find an ear here. Blessings! lance

Thanks for the reply.

A neurologist is the one who diagnosed me with CH. Actually i have seen a lot of neurologist's over the years and it took about 6 or 7 before any of them knew what i had.

As far as prevents given i was on topamax for about 2 weeks. I had a kidney stone and my neurologist was afraid that the topamax caused the kidney stone so he took me off of it. I do not remember what the dosage was unfortunately.

For flow rate of O2 i am using 8 LPM. As far as mask it is just a regular mask that goes over the nose and the mouth.

I am not aware of any other abortive  as i have not seen my neurologist in a while and told me to come back only if things change, but i can't get in to see him until the 21st of this month.

Sometimes if i get one i go and take a walk if it is cold outside and that sometimes helps a little bit but that is about it.

I really appreciate your reply and help.

Quote:

For flow rate of O2 i am using 8 LPM. As far as mask it is just a regular mask that goes over the nose and the mouth.

Many have found a higher flow rate with a better mask helps the effectiveness of O2 therapy.

Racer1_NC wrote on Oct 15^th, 2010 at 2:42pm:

Quote: For flow rate of O2 i am using 8 LPM. As far as mask it is just a regular mask that goes over the nose and the mouth. Many have found a higher flow rate with a better mask helps the effectiveness of O2 therapy.

Thanks for the reply. Any idea how i would go about getting a different mask or what type of mask to get? Also the regulator that i have goes to 8 and that's it. I'll have to call them and see if i can get a different regulator

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

And you can buy your own regulator on e-bay. They're pretty cheap.

The regulators from your O2 supply store should go as high as 15lpm, which is better than what you have now. But you can buy some that go up to 25lpm (much better) or a demand flow valve that will go up as high as 60lpm. You definitely want a non-rebreather mask with a large reservoir bag. If yours has holes in the side of the mask, cover them over with tape. Also, try chugging an energy drink (Red Bull, Monster, 5 Hour) at the first hint of a hit, and then get on the O2. Read the O2 link on the left. Troll the site for hints on how to use the O2. And get a headache specialist. There's a whole bunch of prevents you haven't tried. Blessings! lance