Hey erin,

Welcome, I have cluster headaches too. Yep their a bitch. Do u use oxygen? I can beat down a cluster in less than 5 minutes. There are many other tips of the so called trade you will learn here to make this shit a little easyier to live with.

Dont be scared, The beast is one powerfull thing, and it hurts like hell. But respect it dont fear it.

Coach Bill

Hi Erin,

I've seen several people here report that they just get their O2 from their local welding supply place (no prescription necessary), it isn't very expensive, and it is the same exact O2 you'd get from a medical supply place. Just make sure to follow instructions found at the the oxygen info link to the left of this webpage to the letter, for best chance of success.

There are also folks who've been having impressive success trading this CH beast in for some serious relief gained through some unlikely non toxic mushrooms. Clinical trials regarding this are underway at Harvard medical and in Europe, there was a lot of coverage of it in a recent National Geographic special, and a very good article devoted to it recently in Newsweek.

Here's a link to the Newsweek article - it may be worth reading all the way through for you:
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

You gain leverage with docs when you give them medical literature which support your requests for specific treatments. Print out these two articles.
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Cluster headache.
From: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or (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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And the PDF file below.
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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive
and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
 
Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
============================================

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or
ALL NEW!! HEADACHE 2008-2009
The new 72 page Headache 2008-2009 is hot off the press! Click here to download the PDF instantly! (free)

If you would like a bound copy, send $12 (includes shipping) to
Robbins Headache Clinic
60 Revere Dr, Suite 330
Northbrook, Ill.60062

OR call 847-480-9399 to use Visa or Mastercard.

Hi Erin, welcome to our crazy world.  Doesn't have to be painful and if you follow the suggestions and try out the different stuff on this site then you will have a dramatically different 'next time'. 

Problem is, they go away for a year or 2 (sometime more, sometimes less).  We forget about them and when we get hit again, we are unprepared.  If you think your cycle is over then read a lot and gather your arsenal.  It will be hard to figure much out now because it sounds like you have only had 1 cycle.  After a few more, you will be a master of your destiny once again!

Check out the 'shadow period' that people talk about.  It is the week or 2 of pressure in the same place as an attack.  This usually forecasts your cycle.  I have been able to feel that better the last few years (because I have been looking for it) and I know when to dose with my 'meds'.  A stray one or 2 doesn't mean anything for me, but 4 or 5 in a row and I am getting ready for my cycle.

Have your arsenal ready!  Never get caught without your medicine, oxygen, redbull, mushrooms whatever.  Go live your life and enjoy it (yes, normalcy will come back) just have your bag of tricks ready. 

Thank your husband and bring him to this site.  Awesome supporters live here.  Let us know what you need, we can help.

(frowny face guy says "welcome back from the dead, next time we counter attack!)

--Shaggy

ps, since you are new I feel obligated to say that the medical community has been mediocre at best in its cluster-care.  If you think the diagnosis is accurate, you have to take your health into your own hands.  If you want a prescription for something people do here, you will have to push it with your doc.  If you want to seek 'self-help', then skip the doc's and do what works for you.  It is your pain, don't let the ER doc make the decisions (they never took this class in school).

Verapamil will not help you abort an attack, but instead needs to be taken continuously and regularly at the dosage prescribed by your doctor in order to prevent them or to lessen the intensity.

Napping generally is a bad idea, despite the exhaustion from a hellish night. It's a trigger for many during a cycle.

I hope that the hits you are experiencing are the beast slowly saying goodbye.

I've taken it like the dr has instructed me to take it...I am having a really hard time with the side effects, it makes me extremely sick, but I have been taking them anyway... I am so very tired I have to keep getting up moving around just not to fall asleep...I have had two pots of coffee and I am still so very sleepy..... i have the TV going, Radio on downstairs just for the noise... my poor dogs probably think I am insane LOL but, I'll do whatever I have to not to nap! 

I'm a nurse case manager in an inner city hospital, there are several ways you can get help with affording medications:

1. Whenever you are prescribed a drug, do an online search for that drug + coupon, for example, for Sumavel Injectors (Imitrex needleless injector), there is a coupon available for $35 off the precription. Treximet has $25 off for up to 4 prescriptions. ALWAYS do a search prior to going to the pharmacy, type in the search the drug name + coupon and you'll find quite of the few common drugs have discount programs.

2. Check the drug manufacturer website for patient assistance programs. For example, this is a link to GlaxoSmithKline: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or . Don't be afraid to call - it doesn't take long and you'll be surprised how many people DO qualify for assistance.

3. Check your state's assistance programs. In Nevada, there is TANF (Temporary Assistance for Needy Families) that assist with medications, medical care, etc.

Don't just go without because you think there are no options for affording medication.

And here's my other little speech on affording: I've found a lot of people CAN afford medications but just don't want to PAY for them. Not saying that's your case, but if it takes eliminating cable, cutting off a cell phone, or any other of life's amenities that we don't NEED to survive, do it. Your health should be of prime importance.

What Laurie said! 30 years ago when these things were routinely kicking my ass, I never talked about them with my wife, shut her out of the whole treatment plan. She had lost a father to cancer and was convinced she was going to be a young widow due to my brain tumor!

Fast forward 30 years...now the queen takes care of ordering all my meds, making sure we always have too much oxygen on hand, an extra regulator "just in case"! When she sees (or hears me) grabbing the tank and firing it off she brings me a Red Bull and leaves me alone. She's become a part of this board and the OUCH board. Encourage the hubby to stop by and peruse the board. It's helped us a LOT!

Joe

Erin,

You really do need to work with a good neuro to get a diagnosis and  to get the right long term prevents.  Long term prevents are tricky and very individual.  If you don't like your neuro, others here can (and I'm sure will) give you better advice about finding a new good neuro than I can.  Tell us what state or city you live in.

But you don't need to wait for your neuro to respond to you to get started with effective abortive treatments.  Do you have a good family doctor?  I have a great family doctor and just tell her what I need.  They may be able to prescribe injectable imatrex for you.  In some states you can get oxygen from welding supply stores, while others require you to get a doctor's prescription.  In North Carolina, I was able to get O2 from a welding supply, no prescription.  In California, I get my O2 prescription  from my family doctor, then work with an oxygen provider (Lincare) to get my canisters.  I provide my own mask and regulator.  Tell your family doctor to prescribe 15 liters/minute (you can always use less if that works for you - I use 10 l/min).  You will likely be told you don't need that high a flow rate, but you need to keep insisting that you do need it.  You will want to order a regulator on-line that goes to at least 15 liters/minute, and also order a non-rebreather mask with a bag (Cluster mask).  Read the section here on "OXYGEN INFO" and ask your husband to help you with this project.  Print out the info and take it to your family doctor.

Melatonin works for some people (like me) as a prevent for nighttime headaches, especially if you cycle seasonally.  It's cheap, safe, and over the counter.  This site recommends you start at 3 mg about 45 minutes or an hour before bedtime, then increase every 5 days by 3mg up to 15mg or until your nighttime headaches stop.  For example, I have short-cycle seasonal CH and respond at 6mg.

Laurie

Hi Erin, My name is Donna Mae. I'm a newby here and just winding down from my 1st cycle that began Dec. 20. I know just what you're going through right now and so does everyone else here. It totally sucks! The fear can be overwhelming in the beginning and the helpless feeling as well. It's a process we all go through I'm afraid while we try to figure this thing out.
     Thankfully, I found this site and found I wasn't the only one living this hell. You're not alone.  You've been given alot of good advice and information. It just takes time to find the right meds and the right doctor that will help. I hope your PC Doc can steer you in the right direction. Finding the right Doc is also a process.
      Start a headache journal of you haven't yet. Record in it daily all through your cycle. Take it with you to all your apps. Very important.
     And please.....Hang in there!!! It will get better.....You will get your life back.....I'm just coming back finally after nearly 5 months.
     Keep us updated with your progress. We all care and will try to get you through.
Donna Mae

Erin wrote on May 7^th, 2010 at 7:02pm:

You still qualify for COBRA (this continues your medical insurance through your employer, you pay the premium) - it's good for up to 18 months after you lose your health insurance and under a recent initiative by the government it pays up to 60% of the COBRA cost.

You have quite a few resources in Utah for prescription assistance also:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Sometimes all it takes is a phone call, you'd be surprised how much assistance is out there that no one taps into!