Hi there~I have found a lot of great info. here so first wanted to say thank you.  A safe place where everyone knows your lingo/life w' this craziness... i thought it was time to introduce myself.
I am a 35 yr. old woman(mom to a 5yr.old little girl and wife to an amazingly understainding supportive fire captain husband who brings me home O2), who has been suffering from this since i was around 22, usually once a year at Spring time for 6 to 8 weeks.  But this year the beast hit me in October >:( Last year i had it so bad and ended up having severe panic attacks from too many medications/exhaustion/fear of it... I felt like my nuerologist was experimenting on my... but anyways this cylce seemed to be pretty mild so I went on a lower dosage of Prednisone and had my O2 and sumavil shots and have done a good job managing until this week when the beast beat the Prednisone.  I typically only have night time(3 am/6am) attacks that wake me up.  I had one the other day while driving my daughter to school- my eye was swollen shut and i was sweating/yelling- i hated that i scared my daughter with this  :'(Now I'm at a loss as I HATE prednisone but the dr. wants to up my amount and has also prescribed me Quetipine to help fight the side effects of prednisone but all it does is knock me out... now i'm back in a wacked out state.  I suffer severely from the neck/shoulder crunching soreness too when i get these things.  My nuerologist also tried to do a nerve block in my head but i was so tired/exhausted that i didn't really have the emotional strength for it- has anyone had good luck with this? My Dr. also suggested we do 3 days of higher dose of Frova to to try to break the cycle- does anyone have experience with this? i just need a new game plan- O2 only works if i catch it in time and i can go through a whole tank pretty quick... every year these things last longer(on 8 weeks nows) i always have this fear that the cylcel just won't end...

Quote:

Hi there~I have found a lot of great info. here so first wanted to say thank you.  A safe place where everyone knows your lingo/life w' this craziness... i thought it was time to introduce myself. we welcome you and yes, we all know and understand. I am a 35 yr. old woman(mom to a 5yr.old little girl and wife to an amazingly understainding supportive fire captain husband who brings me home O2), who has been suffering from this since i was around 22, usually once a year at Spring time for 6 to 8 weeks.  But this year the beast hit me in October  Last year i had it so bad and ended up having severe panic attacks from too many medications/exhaustion/fear of it... I felt like my nuerologist was experimenting on my... but anyways this cylce seemed to be pretty mild so I went on a lower dosage of Prednisone and had my O2 and sumavil shots Sumavil is Imitrex/Imigran depending on where in the world you live. and have done a good job managing until this week when the beast beat the Prednisone.  I typically only have night time(3 am/6am) attacks that wake me up.  I had one the other day while driving my daughter to school- my eye was swollen shut eye swollen, redness and tearing is common.  swollen shut is notand i was sweating/yelling- i hated that i scared my daughter with this  Now I'm at a loss as I HATE prednisone but the dr. wants to up my amount and has also prescribed me QuetipineQuetipine is an anti-physcotic and has SOME use in tre[color=#0000ff]ating CH, but not much[/color] to help fight the side effects of prednisone but all it does is knock me out... now i'm back in a wacked out state.  I suffer severely from the neck/shoulder crunching soreness too when i get these things.  My nuerologist also tried to do a nerve block in my head there are far too many treatments out here that this is one of the least one you should be thinking of.  It's not even one I would think of if I had intractable CH.  (all the time/every other treatment failedbut i was so tired/exhausted that i didn't really have the emotional strength for it- has anyone had good luck with this? My Dr. also suggested we do 3 days of higher dose of Frova to to try to break the cycle- does anyone have experience with this? i just need a new game plan- O2 only works if i catch it in time and i can go through a whole tank pretty quick... every year these things last longer(on 8 weeks nows) i always have this fear that the cylcel just won't end...

Chronics are in the minority, so please stiop torturing yourself worrying about that.  Your cycle will end.  It will.

Linda

Essential!
Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

                       CLUSTER HEADACHE HELP AND SUPPORT › GETTING TO KNOW YA › NEWBIES, HELP US...HELP YOU
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And tell us about you docs experience treating headache. Just because he is a neuro does no mean essential traiining and experience with complex headache disorders.

One time to muster up your nerve and ask directly--since this is in YOUR interests.

Present treatment is a bit scattered and I don't want to make any comments until I have an idea of the doc's background.

Hi and welcome

You mentioned being on prednisione to prevent CH. Is this just for short term use over a couple of weeks (a taper dose) or is this a longer term preventive? If it's longer term then this is potentially not a good idea as it can cause multiple problems long term.

Normally prednisione is given for about 10 days starting at a high dose, say 60mg and then tapering off over the 10 days to nothing. At the same time a long term preventive, like verapamil, lithium or topomax is started. The idea is that the prednisione works as a preventive for the first 10 days whilst the longer term preventive builds up to an effective level, whilst avoiding being on the prednisione for too long.

What Bob said! Headaches, specifically CH, are a very unique and narrow field. GP's and even most neuros do not have the education and experience to effectively diagnose and treat CH. Let us know where you're from maybe we can point you to a decent doc that someone else had had success with.

Joe

I agree with what has been said above by the fine and good responders to your post. You did ask about the nerve block and if it helped. There are several so you would need to be specific, but I was given an Occipital Nerve Block (I'm chronic) and it seemed to give my preventatives a chance at kicking in better than they had. It isn't a cure, but it can be a help. But make sure you are working with a headache specialist. That might avoid some of the "shotgun" approaches you describe. Blessings. lance

thank you for your responses... I live in Fairfax, CA just north of San Francisco.  My doctor is Dr. Tracy Newkirk, I do want a new specialist just not sure where to look/find one.  I basically have been self-medicating- I've been on low dose of prednisone for about 7-8 weeks now- eveytime i try to taper off they come back with a vengence... i started at 40- got down to 10 and now i'm back to 20 but had 2 last night.  I can't handle much more than 40 of prednisone- i weigh 120 pounds.  The shots are great but again i'm drugged/up wacked out after and have a hard time functioning...        just need a new doc and a new game plan- this working mom is exhausted - thank you thank you for you time and help          

O.K.! Let's get moving....
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If at all possible--get a headache specialist.

LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. 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.

4. 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.

5. 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-treatment is a no, no. Too much Pred has, as you know, serious side effects. The standard approach is: pred for a few days to instantly stop attacks; starting a long term preventive med at the same time (takes a few days to become effective and so the Pred.); and using an abortive to quickly kill attacks which bread thru.
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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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Three 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
------

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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START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
  Full of articles, blogs, book: written by one of the best headache docs in the Chicago area.
  Worth exploring. The latest book is in e-book edition, $10; comprehensive and worth buying for
  a careful read.
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But first need a good diagnostic work-up to exclude disorders which mimic Cluster but which are not headache disorders. Some of them are serious so investing the time/$ is good protection.

Stop any OTC pain meds now. They only compound Cluster.
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Print the PDF file, below and tuck away for now. This is important information which will make sense after you start working with a good doc. These are the most commonly used meds for Cluster along with evaluations of effectiveness.
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Keep in mind--this is the legal way of saying: What you read here is not a substitute for sound medical guidance!
------------------
"DISCLAIMER: All information contained on this web site is for informational purposes only.  It is in no way intended to be used as a replacement for professional medical treatment.   clusterheadaches.com makes no claims as to the scientific/clinical validity of the information on this site OR to that of the information linked to from this site.  All information taken from the internet should be discussed with a medical professional!" [Bottom of home page.]

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These are docs other CH sufferers have recommended in the San Francisco area. Doctor Goadsby is just this side of a diety....he has spoken at a bunch of our conventions, probably hard to get in to see him but he is THE man when it comes to CH!

Dr. Peter Goadsby
University of California, San Francisco - Headache Center

Dr. Jerome Goldstein
San Francisco Headache Clinic

Dr. Neil H. Raskin
UUCSFMC Neurology Clinic

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

This is a link to the doctors other CH sufferers recommend, I am not familiar with Nor-Cal and there may be some closer, it's alphabetical by state as you go through the list.

Joe

jmacattack wrote on Dec 17^th, 2012 at 1:16pm:

I've been on low dose of prednisone for about 7-8 weeks now- eveytime i try to taper off they come back with a vengence... i started at 40- got down to 10 and now i'm back to 20 but had 2 last night.  I can't handle much more than 40 of prednisone- i weigh 120 pounds.

Please keep NZMike's advice in mind.  I hope you can find a very soon appointment for better treatment.


Mike NZ wrote on Dec 17^th, 2012 at 12:42am:

You mentioned being on prednisione to prevent CH. Is this just for short term use over a couple of weeks (a taper dose) or is this a longer term preventive? If it's longer term then this is potentially not a good idea as it can cause multiple problems long term. Normally prednisione is given for about 10 days starting at a high dose, say 60mg and then tapering off over the 10 days to nothing. At the same time a long term preventive, like verapamil, lithium or topomax is started. The idea is that the prednisione works as a preventive for the first 10 days whilst the longer term preventive builds up to an effective level, whilst avoiding being on the prednisione for too long.

Welcome