Hi, my neurologist has me diagnosed as paroxysimal hemicrania/chronic cluster headaches. My headaches started about 1yr and half ago very abruptly. I was sleeping and my right eye felt so much pressure behind it and was burning, then went into an awful right sided headache, from temple to above right eyebrow, right side of nose..just horrible pain. I know now when they are going to happen because my right eye will first start burning like fire before my headache begins. They happen at night only between 6pm and 3am. Weird I know. My doctor has me on 500mg of lamictal daily, I also take fioricet and staydol for pain, but nothing seems to be helping anymore. My doctor seems to be just uping my lamictal every 2 months when I go see him..but geez its not working. My neurologists has recommended going to Diamond Headache Clinic in Chicago..but Im on ssid and I have medicare which they do accept, but I heard they are very expensive and 20% that I would pay may be overwhelming. I would like to know if anyone here has been to a headache clinic, if so what was your experience, which one did you go to? Did they help you? What do they do as an inpatient because they told me thats what I would have to do. Is it worth doing? I also live in Louisville Ky. Which would mean traveling there and my husband staying in a hotel, if it is worth it, it would be great.
Thanks to All

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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.
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Inpatient treatment is not an automatic response but, rather the exception. Use this preceding to locate a doc near you and let him set the direction for your treatment.

Please avoid the temptation to engage in self-diagnosis and/or treatment prior to finding a good doc.

Hey Chotzey,

Welcome.  This is going back quite a few years for me so keep that in mind. 

Personally, I went to a clinic called MHNI.  Michigan Head and Neurological Institute in Mich.

Here are the pros for MHNI.  At the time they were cutting edge.  when you were admitted, you would get a team of doctors that worked with you.  Not just a single one.  THey would do an eval. then admit you.  You also had a chemist that would work with the team of doctors.  So, they would know what meds should interact properly.  You are watched 24/7. 

Cons.  Cocktail of drugs.  You don't get put on just this or that.  They throw a whole ton of them at you until they find a combo that works.  some people had been there for a month in a hospital.  It costs a ton of money.

For me, was it worth it.  Yes.  They found neurontin.  You may want to contact diamond, mhni and mayo.  Get as much literature as you can and compare.  FInd people who have gone to see what the reputations are.  How many Have they helped, etc.

Thank you for responding.

Hello & Welcome

  DO look at the list Bob recommended for CH savvy docs . . . there might be one close that could get you started on a preventative/abortive regimen you could start after the first visit.

  I'm a "head trauma" CHer . . . my attacks started 1/01 after I nailed my noggin' pretty good.  For 13 months I was seeing a doctor, had CTs, MRI,  was put on Vioxx, then Atenelol (sp?), neither of which was listed in the med info on this site for helping CH. 

  My wife found this site for me 2/02, at that time having 6-8 attacks daily, sometimes 3-5 at night, afraid to eat, afraid to sleep, afraid to take my grandson fishing or to the woods for fear he would be the only one present when I stroked-out.  Here, I found the info to copy and take to my doc (the day after what still ranks as the worst attack I ever had).  I showed him the material, "THIS is what I have!  . . . and THIS is what I want!" (Verapamil, Imitrex, 02).
He relented on the Verapamil and oxygen, but (correctly) refused the Imitrex due to some heart issues, including some artery blockage and high cholesterol.  A few weeks later, when I hit 240 mg of Verap (considered to be minimum effective dose), had my first PF day in over a year (had 3 attacks that night, but had the 02 to kill them before the "dance" stage.

  Oxygen is a miracle abortive for most of us (70% +) and, if used at the onset of attack, you can kill the beast in minutes . . . . MINUTES MATTER with CH.  Your doctor might very well say "I don't prescribe oxygen because insurance won't cover it" . . . . tell him you are aware of that, but are willing to pay cash for the 02 (all you want is the script . . . if he writes it for 4-6 lpm, useless for CH, just say thank you and leave).  Call your local med 02 supplier and ask what their cash price is for "E" tanks.  Prices vary across the country . . . I pay $10 per tank . . . which will give you 45 min. of 02 at 15 lpm . . . . that will knock out several daytime hits (when you can get to it right away) in as little as 5 minutes . . . . or 2-4 nightime hits (the attack is well under way and ramping fast by the time it wakes you . . . so you might use 15-20 min.  An energy drink combined with the 02 has been found to be very effective in shortening the abort time, plus I would add icepacks rubbed all over my face, neck, eye, while huffing on the 02 . . . once you stop the "ramp" of the attack, you know that soon he'll "whoosh" away.

  My personal best news is that, after eleven years chronic with the beast, I haven't had an attack since mid-November, thanks to the D3 regimen you can read about on the "Meds, Therapies . . ." board . . . ."123 days PF and counting . . ." thread started by Batch (also a board expert on 02 use).

  Many of us have had to educate our doctors (those that are receptive), and I am currently fortunate to have one that accepts the materials I've furnished.

  Keep reading . . . keep asking.

    Be Safe,    PFDANs


       Richard

Would you be willing to travel to Madisonville, KY. where I live?  I have a wonderful and knowledgable doctor here.  He's just a family practictioner, but he does have experience with CH and I hasve been educating him for the last 3 years also.   Madisonville, at least is much closer for you.

Linda