after weeks of what y'all might call shadows (that my primary care doc has been working with me to dx), the beast came a calling last weekend.  I was home alone with my 4 children when I had the worst headache of my life.  The pain started behind my left eye and was so strong that by the peak, I was considering taking the ice cream scoop to my eye just for relief. My husband was doing a wedding rehearsal and couldn't come home.  He called a friend and asked her to come over right away.  I called my mom who lives out of state and told her to talk to me and not let me do anything stupid.  The oldest 3 kids were in the bathtub and the baby is going through separation anxiety and would cry anywhere not in my lap.  I would scream and start to panic which would have me hyperventilate.  Mom yelled at me to stop so I wouldn't faint while holding the baby.  When my breathing slowed, the pain was worse so she coached me on breathing fast for a bit to help the pain and then slowing for a bit to keep from passing out.  My friend and her husband arrived so she kept the kids for me (her first time babysitting 4 kids and she's pregnant and sick -- so she's a hero) while her husband took me to the ER.  The nurses kept fussing at me to slow my breathing but I maintained that it helped me feel better.  I was seen by a physician's assistant and he noticed the breathing pattern and asked me a few more questions about the frequency and location of pain.  He then whipped out an o2 mask and put it on me.  15-20 minutes later I was mostly pain free.  He got home health to bring me an o2 tank that night.  I still have appointments with my primary care doc and a neurologist to confirm, but since Friday night I've had 15 HAs and all but two never got past Kip 4 or 5.  The two that got me were ones that started while I was asleep and I didn't get to the o2 before they were already sucktastic.  Those it takes Percoset and misery while it kicks in to take the edge off and then another round of o2.

I feel blessed if this diagnosis is correct that a PA in the ER has family with CH so quickly recognized it and got me on the o2 fast and had a tank at the house before another one hit.

Have many of you had the CHs start more disorganized and the become more intense and organized as time went on?  I've been having daily HAs for a while and it's only been since last weekend that they are more painful and more organized.

Thanks for reading.

Oh, and if one more person says to me, "well, you have 4 kids, of course you have headaches," I may scream. 

Disorganization of symptoms is very common to new cases of Cluster. It may take very little--OR --much time for a stable pattern to emerge. No medical significance in this range of settling down time.

BUT, BUT, BUT!--are you lined up to see a headache doctor to get an effective treatment plan going? Pain meds as the sole response is, by definition, inappropriate for Cluster.
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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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We encourage use of a headache specialist because so many docs lack adequate training/experience in treating headache. The convenince of a local general doc is often traded for effective care. So,

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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Start some basic learning about Cluster. This article a good start; then to the buttons, left, starting with the OUCH site.
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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]
--Also see,

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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Print out the PDF file, below. These are the meds which you should expect a headache doc to be using. YOu can print it out and use as a tool for disucssion of our options.

Reading the messages here (as your family life will allow <bg>) will give you a sense that you are not alone and that most of us have learned how to cope with a disorder which cannot be cured, controlled, not cured.

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I'm seeing a neurologist first as I also have had other medical issues that need attention including what witnesses described as a petit mal seizure.

Pain meds and o2 is just what I got from the ER...not a long term fix.  I'm just glad for the o2.

Clare

Welcome to the board Mama!!  I’ve had CH for 33 years, they haven’t killed me yet! You need an organized approach to managing them so they don’t manage your life. I use a 3 pronged approach, many use a similar approach:

1: A good prevent med. A med I take daily, while on cycle, to reduce the number and intensity of my attacks. I use lithium, it blocks 60-70% of my attack. Verapamil is the most common first line prevent, topomax also has a loyal following. Some have to combine lithium and verapamil together to get relief.

2: A transitional med. Most prevents will take up to 2 weeks to become effective. I go on a prednisone taper, from 80 mg to zero over a two week period to give me a break while my prevent builds up. Prednisone will provide up to 100% relief for many CH’ers but is harsh on the system and should only be used for short periods of time.

3: An abortive therapy, the attack starts, now what? Oxygen should be your first line abortive. Breathing pure 02 will abort an attack for me in less then 10 minutes, that’s completely pain free. Read this link to make sure you're getting the maximum benefit from your 02 useage.

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


Imitrex nasal spray and injectables are very effective abortives. I use the injectables, they’re expensive, and I rarely use them, mostly just when I get caught away from the oxygen. The pill form generally works too slow to be effective for CH’ers.

In the meds section, read the post "123 pain free days and I think I know why" A simple over the counter regimen which is providing a lot of relief for sufferers, it’s a long read, worth the time.

For now, get some energy drinks. Rock Star, Monster, any containing the combo of caffeine and taurine, chug it down as fast as you can when you feel an attack starting. Many can abort or at least really reduce an attack using these.

Finally, visit our sister board for “alternative” treatment methods outside of mainstream medicine. As you’ll see from all the success stories on this board, there is something to it.

clusterbusters.com


Read everything you can on this board, if you are a CH’er, knowledge is your best ally. We’ll help you all we can.

Joe

Thank you both for your knowledge and willingness to share it. 

mamagoober wrote on Oct 19^th, 2011 at 6:26pm:

I was considering taking the ice cream scoop to my eye just for relief.

Sounds like CH alright!  :'( [smiley=pokeeye.gif]

Good thing you have O2 at least. That PA who put you on O2 is a rare gem and should be awarded a medal! Thank God you didn't get stuck with a doctor  [smiley=nono.gif] on that ER visit. :D If the O2 stops giving you as much relief, please keep in mind that higher flow 100% O2 as outlined in the oxygen info link to the left will come to your rescue.

You've been handed some A1 advice from some long time CH'ers in the responses above - they are knowledgeable indeed -  and I concur with them, including the prevention stuff about the D3 regimen and clusterbusters.

Good news: it's actually possible these days to get some real control over this thing, and lots of CH'ers are doing just that.  :)

Mama, while many of these folks have been long-time sufferers, I hope I can bring you the perspective of someone who is recently diagnosed (last year) and some of the ups and downs you will feel as you go through the beginning. I am already mentally beginning to 'accept' what this is, how it affects my life, and helping my wife and many of my family members deal with my painful outbursts. These folks have helped me tremendously, especially as a sounding board, and to help think about things that you may even know, but often forget (keep a journal of your hits, what you do to relieve them, timing, etc.). YOu can get through this. It's difficult, but not the end. It will make you stronger.

I've not been on here in a while.  I guess life is getting in the way.  And that's a good thing.  After following up with my primary care doc (whose brother also suffers) I am on verapamil and have imitrex injectables.  I also read the '123 pain free days' thread and have increased D3 so far.  This preventative regimene does quite well for me and the o2 takes care of the rest.  I occasionally have a pf day. 

Thanks for all of your information and advice.

That's fantastic news. Do stick with the D-3 regimen, the success stories from that are scary good. Wishing you oodles of pain free days. ;)

Joe

After two years pain free (which I am immensely grateful) I am 40 days into a shadowy headache with periods of intense pain. This morning I was cleared by the ENT. It's not sinus. I came here to re-read my original post and was reminded that the first time around they weren't organized to start with. I'm afraid I I'm headed for another cluster. Praying I'm wrong.

Sorry he's back, what level of D-3 are you currently on?

Joe

Not enough. And I had gotten lazy about remembering it. Upping immediately. I also started back on verapamil since I have them on hand and it'll be a week before I can get in to see my GP. I never let my prescription for my o2 go and still have a tank. I'll get it filled before the holiday.

I tried the o2 a few weeks ago and it didn't seem to help, but they're not organized. There's always some ache in the background, but I've not gotten very high on the Kip scale yet. That's why I thought they were sinus related. I was devastated when the ENT said that there was no evidence in my sinuses to explain the headache. I wanted them to have another explanation.

Finally got back into my GP and she wrote me a script for portable o2. The home health "experts" were less than helpful. They were telling me an E tank would only last 30 seconds at 12-15 lpm. They acted like my GP was idiotic for writing the script that way. Fortunately, I had read the oxygen link on the main page and knew how long the tank will last at 15 lpm. Then they told me that they didn't make regulators that go above 8 lpm. I told her that I had one in my Amazon cart and that she could keep hers.  I'll be set by tomorrow.

I increased my d3 and got rid of the shadow and decreased headaches to 2 or 3 a day that are all killed by o2. Not as bad the second cycle now that I know what I'm up against. Thanks to all of you and the research gone before.

Way to grab the bull by the horns! A CH'er is his/her best advocate. Hoping the increased D-3 proves the magic for you, that it's been for me.

Joe