Hi everyone,

My name is Anita, I live in NC. I am fairly certain that my husband is suffering from Cluster Headaches. It's the only thing that makes sense. I have researched your site here for hours.

We have been struggling with these horrible things since the week of Thanksgiving. All of his symptoms fit, they don't fit typical migranes. And nothing seems to help. It's scary, and we are both emotionally drained. All of the Dr visits & medications have pretty much drained our bank acct too.

We currently have no insurance of any kind, I need to fix that somehow. So we can get him to a headache specialist.

I just want to take his pain away, I feel so helpless. And he doesn't understand why a pain killer doesn't help. He keeps insisting there must be something out there to make the pain go away...
I'm very sad, very worried, & have cried endless tears for him.

Thank you all for everything you have put here on the website. It does help to know we aren't alone.

Anita

Hey Anita,

Welcome to CH.com.  You've come to the right place.  Check the PM inbox in bold at the upper left corner of this page.  I've sent you a PM.

Have your husband's physicians or neurologists done an MRI and ruled out an organic cause of his headaches?  We don't diagnose here at CH.com. That requires a licensed PCP/neurologist. 

A diagnosis is very important as there are some far more serious conditions other than cluster headache that cause headache pain...  And we understand no medical insurance...  That appears to be a growing problem for a lot of people these days...

There are a few things you can have your husband do in the mean time to help relieve some of the pain. 

For starters, opiate pain medications are useless and do nothing to stop cluster headache... The best they can do is take the edge off the pain but the tradeoff is a highly probable addiction so not worth it. 

NSAIDs (aspirin, tylenol, ibuprofen...  ) are also useless in treating cluster headache. They can also be dangerous as well if taken for any length of time.

Things we've found that do work:

Pick up some Red Bull, chill it down and have your husband pound down/drink the entire contents of the can at the first sign of an approaching headache.

Wrap a single ice cube in a doubled paper towel and wet the flattest side with water.  Have your husband place the ice cube on top of his head just off center on the "hit" side (side with the most pain) on a line even with the front of his ear.  He'll find the spot that works best.

This will sting for a few minutes, but after that a numbing effect takes place and that will help take the edge off the headache pain.

I used to measure my cluster headaches by the number of ice cubes I used until the pain subsided...  Most were a one cuber...  some got to two and a few were three cubers.

Diet...  A low arterial/systemic pH (too much acid) exacerbates cluster headaches.  A GOMBS diet can help elevate a low pH and this can help lessen some of the pain. GOMBS stands for Greens, Onions, Mushrooms, Beans/Berries and Seeds/Nuts.  You can read about GOMBS at the following link:

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

A handful of each with meals can work wonders.

Please try to get a diagnosis...  with that in hand there are a lot of potential treatments.

Take care and please keep us posted.

V/R, Batch

Thank you so much for the reply Batch, & the message. I have printed it all out for Kevin to read.
We are in the process of getting him a CT or MRI at the moment. I can't remember which one his Dr said. We found a place close by that can do them a little less expensive, hopefully they will work out.
Our pharmist has been the most helpful, even told us to find a Dr who would prescribe the oxygen. We haven't found that Dr yet.
I just need to keep him sane & alive until we can get the diagnosis & help.
Getting Dr's to actually listen to what you are saying can be a challenge. And setting up appts that are weeks away doesn't help get him through the daily hell. Right now it has pretty much shut down out lives, he can't hardly work, he tried to go Christmas shopping only to have one hit 30 min after he started, came straight home. Honestly, he's afraid to do anything.
sigh....

Thank you so much for your reply. It actually helps more than you know.

Anita,

I know how your husband feels...  There were times before I got a "roady" oxygen therapy kit when I was too spooked to go anywhere.

Where do you live in NC? We've got lists of physicians/neurologists all over the East Coast that CH'ers say are well worth a call.

Don't forget the email...

Take care and hang in there... Things will get better...

V/R, Batch

First, tell us where you live:
It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location.
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To possibly save you $: ask the doc you are seeing if he has experience treating headache disorders. So many docs lack training/experience with complex headache disorders (like Cluster) that it would be shaeme to continues with someone who lacks skill.

If this turns out to be the case:

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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Keep us informed as things move along. When you have a firm diagnosis in hand, we can get more focused on how to handle the problem.

Hi Anita

We've all been through the experience of having these "headaches" come into our lives and going through the journey to get a diagnosis. For some people this takes just weeks and for others years (which shows the importance of working with a headache specialist).

Whilst you're waiting for that diagnosis for your husband do read up all you can about different headache types (there are lots) as by being educated you can maximise the value of the time you see with doctors, asking all the right questions. One tip here is to write your questions down before the appointment and then as you get them answered, tick them off and add notes. I'm not the only person to have not done this and then remembered questions I wanted answering 2 minutes after the appointment ended.

If you're not already doing it, get him to keep a headache diary which has info about each headache including the time, date, pain location, pain intensity (1-10), duration and any possible triggers or comments.

If it is CH then alcohol is a very common trigger, so it might be an idea for him to skip this for now, which isn't easy at this time of the year. It isn't a perfect diagnostic tool though as there are some people for whom it isn't a trigger.

Keep reading and ask all the questions you can think of.

Thanks everyone!! Sorry, we live in Calabash, NC. That is about 30 min north of Myrtle Beach SC & an hour south of Wilmington NC.

I will check out the websites you suggested. One of the problems we have been encountering here is that hardly any of the specialist Drs will see you without a referral from your regular Dr... and frankly, our regular Dr is in no big hurry to do anything it seems. Could just be the holiday season, no one wants to be at work.

Kevin did get a CT scan today, they said it would be back to his Dr office in 3 days, which who knows when that will actually be with Christmas next week. And he had an eye exam this week that turned out fine with no problems.

He doesn't drink anymore, it's been years. He does smoke but has cut that down to almost non-existent since the headaches started. He was diagnosed with eplipsy about 6 years ago & takes meds for that.
Speaking of, I read your article Batch about eplipsy & Vitamin D. Very interesting. And really does make me wonder if whatever causes his seizures is also causing these headaches to appear.

We are keeping a diary, although I'm sure we could put more detail in it. And he thinks he has been having these headaches for years & just didn't realize it. They were never this bad, felt more like a hangover headache for a few hours every once in a while. Of course this is when he used to drink, so who knows for sure. But they were always in the same place, right behind his left eye.

Thank you all so much for your help!! I will keep you posted. It's not likely going to be quick, since this is the absolute worst time to try & get Dr appts.

Anita

Don't assume you need a referral. Get on the phone and, using the sources I listed, start calling and asking if a referral is required. Finding a good headache doc and putting your $ in his pocket is better than sticking with a doc who is isn't showing much knowledge/skill.

While you are doing the calling, print out the PDF article below and file it away for now. These meds won't mean anytihing now but when you see a new doc, these are the meds which he should be using--the most commonly used and effective presently used. Then you can use this artricle to lead discussions about treatment and give you some useful information.

Ditto for the article just following. Print and file. IF you get a headache doc, print it and ask about a trial. This med is abort (kill) an attack rapidly and is the least expensive drug for this purpose out there.
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Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.


Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

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Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.

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CHwifeNC wrote on Dec 20^th, 2013 at 7:24pm:

We are keeping a diary, although I'm sure we could put more detail in it. And he thinks he has been having these headaches for years & just didn't realize it. They were never this bad, felt more like a hangover headache for a few hours every once in a while. Of course this is when he used to drink, so who knows for sure. But they were always in the same place, right behind his left eye.

It is fairly common that CHs don't just start from day one with the full blown classic CH symptoms but instead often seem to evolve over weeks, months or sometimes several cycles. My own started with what I thought were bad, then soon after terrible headaches at first, only to realise that in hindsight they were actually pretty mild when I got classic CHs after about a month or so.

Good move on getting the CT scan and eye tests done. These will help with the diagnosis to rule in / out some possible causes. Things will likely be complicated by the epilepsy as the medication for it and whatever the headache thing is needs to not interfere with each other.