Hi,  I have been getting cluster headaches for the past couple of years now.  They always come in the fall and always hit around 4 am.  I tend to get mutliple ones a day but I can always count on the 4 am one.   The problem is I am a college student and this beast is untimely and causing me to take incompletes in classes b/c of doctors visits ct scans PAIN etc etc etc. Is there any legislation to back college students to get university professors to work with their students with cluster headaches?  Does IDEA entail clusters?  As I said I'm a college student (senior in biology)  and a nationally ranked NCAA athlete.  First off is there support to keep eligibility for athletics if my clusters interfere with my schooling and cause me to take incompletes?  I have always been a good student, maintained above a 3.0 gradepoint average and even achieved academic all-american honors from the NCAA. The beast is controlling me, meds aren't helping, I'm losing my education, athletics, a lot of what I have worked so hard for.  Anyways any advice would be great.

Hello 34bioarm34 and Welcome!  I am sorry you are having a rough time.  CH can be devastating to the sufferer and their family.  See if you can change your treatment with your Doc there may be alternatives that you haven't tried yet.

Getting on Disability is very hard to do.  That being said here are a couple of links that may help inform you and possibly get you on your way.

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b/c of doctors visits ... PAIN

If considering the CT scan a singular experience, with the other mentioned ongoing occurances over these couple years, Ginger has already posted a first thought, likewise presuming diagnosis.



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treatment

What different preventive options have you worked with for the hits?  Dosage and time length of their trial also matter.  No abortive capabilities are mentioned resulting from dr visits.

34bioarm34 wrote on Oct 12^th, 2010 at 9:36pm:

Is there any legislation to back college students to get university professors to work with their students with cluster headaches?  Does IDEA entail clusters?  As I said I'm a college student (senior in biology)  and a nationally ranked NCAA athlete.  First off is there support to keep eligibility for athletics if my clusters interfere with my schooling and cause me to take incompletes?

Hey there, bioarm. Your question about the IDEA Act is a good one, but my knolwedge of this act for Americans with Disabilities is that it pertains almost exclusively to those under 21, or for those who have had an IEP with a court recognized disability, 24. As to NCAA support, my guess is no. Look how many athletes suffer with debilitating migraines without support from the NCAA, and that's not an orphan disease. Your Athletic Director and Coach are your best intercessors with professors. They scholarshipped you for a reason so they have a vested interest in keeping you around. Prayers are with you. God bless! lance

Talk to your professors.  My daughter had some pretty severe health problems throughout her academic career (she has a Masters) and I don't remember 1 professor who was not willing to work with her.

He man, I'm a college student too.  I had to drop all of my calsses this quarter for the very same reason.  I am a Disabled Vet so I registered through the disability office at my school. 

Reality is that I dont need a special chair or access to a special bathroom or anything, I just need an advocate in the event of an attack.  I spoke to my doctor and they gave good info to the disability folks at the school.  I was a few days past the drop with no negative impact date and they all let me slide. 

So, go to your disability office, take their forms to your doc and work with them to fill the forms out.  Submit them to your school and God forbid, if an attack occurs, you should be covered.

Good luck man...

prevantatives have ranged from depakote to innopran and all the medrol packs for allergies. . pain they have done darvocet, imitrex (pill and air loaded shots) fioricet, butalbital caffiene codiene mix, and stadol spray. . we have tried to o2 as well but i'm not sure if it was at a high enough intake rate.. as far as pain control the stadol kind of works. . going to the hospital they would give me demorol and by the time i got the shot the cluster was ready to stop.

anywho. . thanks for all the replies.  I'm not typical to use message boards but when you need help you seek it. . .

Could drive a truck through the room for improvement by what's been thrown at you if diagnosed CH, starting with the doc or alternatives.

I agree with kevin.  Unless there's a whole lot more prevents that you've tried, there's a big *hole* in your treatment.  Your best bet would be to print out info and take it to your docs.

what kind of recommendations would you guys suggest for preventatives. . . The neuro I see seems nice and all but being nice is not the same as being diligent about treating patients. . .my general doctor is through the university and he's quick to suggestions without really listening or understanding the problem.. it's like he doesn't think the problem exists. . . my coaches are trying to advocate for me. . my roommates are also there for support b/c when i get a cluster F*** ,as i call them, they wake up. . .

anywho, thanks again

Recommending is difficult because of individual effectiveness of different doses.

Unfamiliar with innopran, but depakote was the first neuro's script long ago that I gave the 30 day trial period he recommended and no, HAD to return for a reason to f*cking even see him.

In his CH bewilderment scribed

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fioricet

I stopped going.


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butalbital caffiene codiene mix

The same.  Add codiene and its fiorsol.

Hospital-visiting demerol, he's not doing much for you.  Haven't done Stadol, but oxygen works fine.  Again though, at an individual fitting flow rate, which is higher than I'd suspect was tried.  Verapamil helps me prevent, but is individually tricky, too.

Bob Johnson has a good post he offers for finding a headache specialist.  Unless he stops by, you'd have to search around the place here.  Another good'n for many is the clusterbuster site.

Yeah, I agree with Kevin. Without "recommending" any particular treatment, we share what has or has not worked for us. In addition to what has already been mentioned, I and others have found pred tapers, cafergot, lithium, triptylines, and others to work or not work depending on where we were in the cycle. I have tried stadol, twice, and both times it knocked me on my butt-for 15 seconds-and the hit rushed back in with even more vigor. 'Sides, it's very addictive. Get a good specialist. Blessings. lance

Innopran is another name for Inderol.

Get ur work done!! Then when your not getting hits, knock the holy living hell out of someone!!

Dont take any shit off anyone.. Get er done!!!

Coach Bill

I have stolen this from Bob in the past and posted it. A great method to find yourself a knowledgeable neuro.

Joe

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.