My name is cathy. Today I started a Headache journal. My life since the last week of March has been a nightmare. It started with a Sinus infection, Dr. gave me prednisone, it didn't work - Then thought maybe it's allergies, so the first week of April went to a Allergy Specialist.  After sticking me with trays full of needles - NOTHING - Gave me Rx Allerx and nasal spray - NOTHING - he sent me for a Sinus CT - NOTHING - I had our home swabbed and tests strips sent to IMS labs to test for every mold imaginable - NOTHING - I go back to my Doctor in distress and tell her that I cannot function like this!  I have to work every day and my head hurts so bad, my eye waters so much I can barely put my makeup on - She orders a head CT - Puts me on Pataday eye drops and Fioricet. During every headache I have never had nausea, until I took the Fioricet.  She has now put me on Topamax and is sending me to the Neurologist.  My husband and I have for weeks been scouring the internet, researching every type of headaches they have categorized, that's when we found out it was Cluster headaches with no doubt and when I found Clusterhead.com last night, a wave of warmth flooded through me.  I am just like everybody on here and I love the KIP scale and all the advice.  I have so many questions.....WHY ME? Why at the age of 43 at the beginning of pollen season did this disease pick me?  Why do I have 20 headaches a day and how can they wake me from a sound sleep at 1:45 AM? Why can I stay outside all day and have fewer headaches? Is it the oxygen factor?  I love this site. I hate Doctors don't understand it better and I feel swept under the rug. Thank you for your dedication and help.  And I understand why it's called the Suicide Headache too.  There are mornings I would love to just put a bullet through it but I never will.  My daughters and husband pull me through...even though most of the time they can be a trigger for an episode!

Welcome to the club, are you lucky enough to be working with a headache specialist neurologist? There are many effective treatments available for CH to minimize its effect on your life. General Practitioners know next to nothing about CH and your garden variety Neuro isn't much better. We see the best results from Headache Specialist Neuros.

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Read this link and discuss it with your doc. Oxygen should be your first line abortive. I'm 51, a 33 year sufferer of CH, and oxygen remains my number one abortive. I can completely abort an attack, that's totally pain free, in as little as 6-8 minutes. read the link as it must be used correctly or it doesn't work.

Welcome home.

Joe

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Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you

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Your story is all too common here where many folks have had a hard time finding competent care for headache. Fact is, medical schools teach very little on the topic and people often spend years trying to find some help. So, having said that, if you have the option, find a headache specialist--NOT a general neurologist.
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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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Many of us have had to learn more about Cluster than do our docs and then feed them medical info. to help them to help us. There is an abundance of medical info we can pass on if you ask focused questions about our needs.

Start with exploring the buttons, left, begin with OUCH.
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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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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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Starting to develop Cluster at your age is on the edge of being "uncommon", which is to say, when you find a specialist, ask him to consider, in his diagnostic workup, the possibility of "cluster-LIKE" headaches. There are a number of serious disorders which mimic Cluster but which are not headaches. Need a sharp doc to work thru this possibility BEFORE you make any assumptions about what is actually going on.

(Not to scare you! but look over:

Link to: cluster-LIKE headache.

Section, "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache")
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When you find a good specialist, the PDF file, below, will outline commonly used treatments. This are the items which you should hear him talk about.
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Lastly, develop patience! It's a major survival skill in this area where diagnosis and treatment can be a bit of a trial. But you will find deep support here.

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I'm trying to edit my profile but when I go to it, I don't see where I can add my personal info..... I am very thankful for all the kindness and information I have received. Has anyone you known took Topamax.  I understand it can take months to work!!

Click on your profile, then in the left box choose edit profile, it'll want your password, then the first box will give you the option of entering where you live.

I haven't heard "months" for topomax, but it's not unusual for it to take a week or two. Combine that with the first few tries to establish dosing and maybe it will go close to a month. :(

Joe

This is the latest evaluation of effectiveness of the meds used for Cluster. Suggest you print it out and use as a tool to discuss options with the doc. (PDF file, below.)

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Hi Cathy,

ALthough I've tried most CH drugs, topomax isn't one of them. I see others here commonly refer to it as "dopey-max" due to the doped up feeling it can induce, so that hasn't been particularly inspiring, but I'm trying to avoid drugs as much as possible at this point anyway.

Like many, I've been orienting more towards the powerful non-drug approaches for CH prevention - for one thing because we're seeing message board members here and at clusterbusters.com posting reports of them working better than the drugs.

Here's a quick sampling of what I think are some real major players:

1) The high dose vitamin D3 regimen. In my mind this isn't quite as proven yet as 2) below, just because it's relatively recently that there's been a topic here with folks reporting their results, but there have been some impressive results. I'd suggest reading through the topic to see what you think. Here it is:
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2) The clusterbusters approach. Prevention so powerful that sometimes just one dose can knock out an entire episode that would've otherwise gone on for months. It's been used for thousands of years by indigenous peoples, and modern day CH'ers started adopting it several years ago. It's not always legal, but milder acting Rivea Corymbosa seeds are legal to order and possess. Here's a Newseek article on the subject:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

3) Melatonin before bed to prevent the night hits. Actually I get the impression that the success rate with this may not be as high as with, say, clusterbusters, but it seems worth a try. 9 mg starting dose, up to 18 or 21 mg.

Here's hoping for some serious pain free time in your near future.  :)

Melatonin, for a week now has not helped me....wish I had good news. I only took 6mg at bedtime though.

Hi Gardengal,

Well the starting dose is supposed to be 9 mg, and if that doesn't work, folks have gone all the way up to 21 mg before obtaining relief, so I wonder if you still might want to give 9 mg a shot?

I require 15mgs of melatonin for effective prevention at night. And topamax can work (I was on it for a year) but it does have two interesting side effects: it is probably the only antiepileptic that causes weight loss, and I describe its dopiness as voluntary alzheimers. Black holes suddenly appear when you are trying to retrieve everyday words. I switched off it and have been on increased verapamil (640mg) and that has helped. And Cathy, yes, we can seem to be swept aside since this is an orphan disease. But through the good work of this site, and the dedication of some research doctors, we are getting some attention. Still, the shared experiences here of expert sufferer's is a wealth of information. Read, take notes, and suffer less! Blessings. lance

I saw the Neurologist today! He gave me hope that I will feel better and started me on Verapamil and Nortriptyline. I am going to sleep tonight with hope that I will not wake up in the middle of the night and in the morning and then suffer all day with shadows and demons.  It's the only hope I have had in over 2 months......

It's a good start, Cathy. Remember, it takes awhile for both meds to build up to serum level, maybe two weeks. In the meantime, many of us have found that a prednisone taper (starting at a high dose-60-80mg-and gradually decreasing over a 7-10 day period has aided in the transition while verapamil levels build. Any thoughts on the use of O2? Stay hopeful, girl...there is life beyond CHs. I know, I've seen it! Blessings. lance

I was disappointed when I woke up at 2:02 AM with that stabbing hot poker in my eye!!! I didn't realize it would take time to build up in my system. I do have the prednisone but went from 127 to 146 lbs and stopped taking it immediately! It's so easy to gain that weight and so very hard to get it off!!! He didn't discuss the O2 therapy. I really wasn't that impressed with him, he's the only one in our town and he spent less than 10 minutes in the room. He looked at the headache journal and the CT scan, told me what meds he wanted to do, left the room, I assumed he was coming back but the nurse came back and said ok, you're done. That was it, come back in 3 months. I may have to look into one of the Neurologists that are actually familiar with Cluster Headaches.  I do feel like I didn't seem to have as many today and when they did hit, they didn't last as long as usual.  Is that what the medication usually does??

Quote:

I may have to look into one of the Neurologists that are actually familiar with Cluster Headaches.  I do feel like I didn't seem to have as many today and when they did hit, they didn't last as long as usual.  Is that what the medication usually does??

Hi Cathy. Yes, and yes.  Yes, get a neuro who specializes especially since in the early stages of diagnosis you may have to spend some time fishin' for the right combo of meds that will work for you, and this can be frusticating if the doc isn't fully on board with beating this thing.  And yes, I notice a gradual decrease whenever I need to up my meds until I reach that effective level. And you really need to give O2 therapy a try. It not only tends to be a very effective abortive, but it seems the quicker and more often you abort the hits the less tenacious they become. Or so it seems to me. Blessings. lance

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.