Hi All,,   wow,  i'm so very glad to find you.   I'm here in florida thinking i'm going out of my mind, really, i really need to be out of it.  I'm on day 5 after driving myself to the E.R. and finding out that i am now in the elite club of Clusterheads.  At least i'm not alone.  The pain started on my left side at 2pm, and i thought i had a sinus infection with a toothache.    ;D   silly me,  i went and got OTC allergy stuff,  and tried to lay down. By 3pm i was screamin in pain and for help, thinking i had a tumor that burst.  By 8pm i was in E.R.   the doc  sent me for a CAT scan,  but looked at me, and said,  you have "clusters".  After a shot and some time down,  they sent me home @ 1am, with a prescrip.   that i couldn't fill until the morning.  2am my "alien" as i call it  hit again, but with full rage.  I paced, bounced, yelled, cryied for the rest of the night.  Im 51 years old,  had two kids, and i've never had something like this before.  I'm scared of my "aliens appts" now.   Any suggestions?  :-?

This Topic was moved here from Getting to Know Ya by Guiseppi.

Hi Loriann, I moved this post down here as more people will read it here and respond to your questions. Lots of suggestions for you.  :)
Are you working with a headache specialist neurologist? Most doctors and even most of your garden variety neuros know very little about CH. We've seen the best and fastest results around here when people get hooked up with a headache specialist neurologist. The fact he recognized what could be CH, and knew to do the scans to eliminate the more sinister stuff, is a good sign!

Did he prescribe you any preventative medications, somethng to take daily to reduce the number and intensity of your attacks? Verapamil, Lithium and Topomax are some of the common first line attempts. Did he prescribe you an abortive regimen? Imitrex injectables or nasal sprays? (Imitrex pills generally take too long to be absorbed to help CH'ers)
Most importantly, did he discuss oxygen? Please read this link.

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If you are a clusterhead, oxygen will be your new best friend. I went from 90 minute attacks to 6-8 minute aborts just by huffing 02. It must be used correctly or it doesn't work.

You have much reading to do as an educated CH'er hurts a lot less. ;) Welcome to the board.

Joe

Yes, if at all possible, line up a headache specialist. Majority of docs, incluiding neurologists, are poorly trained in this area.
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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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Self-education is really important. Explore the buttons, left, starting with the OUCH site and then give a look at:




Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]
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A couple of sites which are worth your attention: medical literature, films, plus the expected information
about CH.

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

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Hi Lori Ann,

Sorry you have CH now, but at least you got diagnosed by the ER doc right away. That is rare.  CH'ers commonly go for years without a diagnosis. Kudos to that ER doc!

Agreed with the posts above regarding O2, headache specialist, etc.

I'll just add that the new high dose vitamin D3 regimen appears pretty harmless to try, and is intriguing since several members have been reporting impressive results with it: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Also the clusterbusters natural approach is a more powerful and effective preventative than any drug I've seen. It's not for everyone - there are warnings to heed, but one thing to keep in mind while reading this Newsweek article (!) on the subject is the milder and legal Rivea Corymbosa seeds have been showing results for some: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Welcome, Lori Ann. You've been given some great advice. The problem is, you are in the midst of a full blown cycle, or so it would appear. And you have a lot of research before you, reading that may not fit your scheduled beast appointments. If you have someone who is willing to help you in this, they can research for you and take note of the salient points which are so important to being fully armed and armored. There is hope, even if it may not feel so at the moment. Hang in there, read if you can, enlist help in researching the beast, and get ready to kick some beast butt. Blessings. lance

Want to reinforce my earlier suggestion that you work with a headache specialist.

Developing Cluster for the first time at your age is putting you in the "uncommon" group <bg>! But it does increase the possibility that you are experiencing what is termed "cluster-LIKE" headache. Some medical problems which have nothing to do with Cluster can give the appearance of being Cluster. These can be serious disorders which need a skilled hand to sort out.

The basic problem is that so many docs, including neurologists, have poor training in headache. The headache specialist gives you the best skill set in such situations.

Thank you so very much for getting me some info,  It seems as i have stumbled into a "family" that FINALLY cares, and not putting it off, as too "it's just a migraine,you're not in that much pain, and "it's all in your head" (lol, tis it is,but umm i didn't think it would set up housekeeping in my head).
I was given the name of a "headache" neurologist, that i will call, as well as a supply of vicodin,  which is by all means like putting a tic tac in a levey break. 
I have another problem that is coming back, I have Ulcerative Colitis, and this is getting to be enough,  the CH triggers my U.C.  and then by me not being able to keep anything in,  triggers the CH to get uglier.  I have found tho, (happy note)  that sensodyne toothpaste for some reason is calming down the tooth pain,  so i can at least walk, rock or bounce thru my 2pm & 2am times.  I have been reading and asking, i have been told Cinnamon helps?  i have gotten myself a bottle of 02 since i own a construction company, until my Dr's. appt is available.

Thank you again, my friends    :)   keep smiling,  makes others wonder what in the world is on your mind. hehehhe

Hi LoriAnn & Welcome to Clusterville

  First . . . great you have 02 available . . . now you need to get the proper mask and regulator . . . is a miracle abortive for most of us . .  the key is to get on it at the first sign of attack.  Order your Op2mask (links on the site .  .$27.50) ASAP . . . designed for clusterheads and will give you 100% 02, which is what we need to abort.

  The Vicodin will probably be useless.  It's my understanding that not only do narcotics NOT abort or prevent an attack, they often can become a trigger.  I've been away for a while but I assume that's still the conventional wisdom.

  Read, read, read . . . and ask any questions you may have . . . the answers/opinions you will get here come from folks who truly know your pain.

   Be Safe,   PFDANs

      Richard

RichardN wrote on May 22^nd, 2011 at 1:22am:

The Vicodin will probably be useless.  It's my understanding that not only do narcotics NOT abort or prevent an attack, they often can become a trigger.  I've been away for a while but I assume that's still the conventional wisdom.

Avoiding narcotics is the correct advice for the vast majority of people. They take too long to take effect and normally do relatively litte to blunt the pain of a CH. In contrast, using oxygen or injectable imitrex can kill off a CH in minutes.

Narcotics can also be seriously addictive in a short period of time. Going through narcotic withdrawal whilst getting CHs isn't fun.

And preventing a CH in the first place with a good preventive is so much better than trying to abort one once it's arrived.

Hi and THANK YOU so much for your input.  I have been away working.  I have been talking with family and friends, and I have been going for over 30 years with extremely bad and difficult headaches, that have been pushed off as migrains, "stress", teeth problems and/or tension. I've also been thought i had TIA, severe depression and my pituitary gland needed to be removed. ( I'm now scared to death of hospitals and doctors)  My family thinks that i have been a cluster-head for all this time, after researching and reading up on this, and the clusters have become beyond my point of being able to handle them without some kind of help.
I have realized that I need to stay out of direct sunlight ( i live in Florida) so I don't go out without a hat now, or in the hottest part of the day.  I have also started a very intense exercise schedule, and on a strict diet of nothing processed.
 
Thank you again so very much.  :)

"Success is not final, failure is not fatal,  it's the courage to continue that counts"

Quote:

I have realized that I need to stay out of direct sunlight ( i live in Florida) so I don't go out without a hat now, or in the hottest part of the day.  I have also started a very intense exercise schedule, and on a strict diet of nothing processed.

I lived in FL when these hit, and yes, the heat and humidity were a definite trigger for me. I also discovered wearing a hat could help but any pressure around my temple from the hat band, if a hit was near, would also trigger off an attack. Also, be super careful to stay hydrated. I know not many sutherns need to be told that, only transplated yankees seem to take the sun too lightly, but you now have another reason to be cautious. Read the water X3 link. It may help. Blessings. lance