Hi, I'm Leea, 53 y/o female. I've had migraines on and off for years, but this past month or so they've changed into what an ER doc thinks are cluster. i've taken your quiz and I do seem to meet most of the criteria. I'm scheduling a Dr appt, however, I don't have insurance and not much extra money, so hopefully a nurse prac. or GP will prescribe something. Also, how do you all cope with your jobs? I've missed 5 days out of the past 4 weeks because of these things, and I work part time, so this is a lot. I don't know what I'm going to do if this doesn't improve soon...any advice appreciated, thanks!

I manage with a 2 pronged approach:

1: A good preventative medication, a med I take daily while on cycle, which hopefully reduces the number and intensity of my hits. I use lithium at 1200 mg. a day. Verapamil and Topomax are 2 other popular prevents.

2: A good abortive strategy. A headache starts, now what. Read the oxygen info link on the left. I can abort an attack in less then 10 minutes using oxygen. Imitrex is effective but even with insurance is expensive. For now try keeping some energy drinks on hand, Rock Star, Monster, any containing the combo of caffeine and taurine. Chug one at the first sign of an attack, it'll abort or at least lessen the intensity of the attack for many.

I've lived with them for 31 years, it can be done. Just takes lots of pre planning.

Let us know how the appointment goes!

joe

Hi Leea....it may seem overwhelming to you at the moment but follow the good advice that Joe has provided for you.

Educating yourself and being proactive are mandatory to help you in your fight. Thing will get better. Stay around, ask questions and let us know your progress :)

All the best

Iddy 

Thanks to both of you, as well as the good advice on the boards. I've made an appt, but of course the "first available" appt isn't for 2 weeks, no matter how I begged!.

How do you all manage your jobs? I do have an FMLA for migraines, but the frequency that I've had to call off worries me. Also, of course, co-workers who don't get this kind of headache. I've read the letter to bosses and coworkers, and it's great, but in my case, it could cause some problems as part of what I do involves driving a company car. Any advice appreciated, thanks!

Hi Leea,

Sorry to hear you're in that rough spot with the CH.

Your kind first responder Joe tells it like it is, and you'll find many many others here who also swear by the O2. Its important to follow these instructions to the letter:

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From what I've gathered here, getting your O2 from a welding supply place can be a good way to go when you don't have insurance, because its the exact same stuff as medical O2, but cheaper, and you get it without prescription right away.

If you're somewhere in the really cold 80 % of the US right now, the cheapest way to abort a CH attack that I know of is to deep breathe thru the nose some really cold air for 10 -15 minutes right at the onset of an attack. Its not guaranteed, effectiveness could depend on the severity of the hit, but the price is really right.

Keep in mind that chances are you're an episodic CH sufferer, in which case you'll have long CH free stretches between episodes.

2 words of caution:

1) Doctors unfortunately are generally unaware of CH, so you can't just automatically trust them to prescribe the right thing.

2) Don't drink any alcohol during a CH episode!!!! For most of us doing so will bring on a truly crushing hit.

It comes down to trial and error and some luck!!! In the early 80's when I was still trying to figure out what I had, I tried:

Midrin, Fiorinal, Vicodain, disolving ergotamine taken under my tongue, 3% lidocaine drops dripped down my nostril, ....I'm sure I'm forgetting a bunch.......then verapamil at a dose I now know was way too low, and finally my silver bullet lithium! (It's funny lithium was suggested to me early on but my response was no way that's for crazy people!)

Once you find an effective prevent your total number of attacks goes down, it becomes a much easier job of managing them. Bejeeber makes a good point, on cycle, alcohol is an almost universal trigger!

Joe

If your employer is receptive, there is a letter on the OUCH site (left) which you can give him.

New CH cases often take weeks or months to settle down to a predictable pattern. If you're fortunate, they may come mostly in non-workng housrs. Point being: work with the boss and see what develops.

Spend some time learning about CH. IF you cannot afford a headache specialist, there is a good change that you will have to educate your health care provider on how to treat you! (That's a not uncommon experience with many of us!)

Suggest you print out this article and the list of treatments from Rozen, which follows. By providing medical materials you are more likely to get the provider's attention and give them some direction for treating you.
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Very good piece for you too!

 
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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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)
================
Michigan Headache & Neurological Institute for another list of treatments and other articles:

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Thank you so much! Been trying to get in someplace sooner than the middle-end of this month without much luck. Employer isn't being much help, which is increasing the stress, grrrr!  Worried and frustrated at this point. Like others i've read here, I'm getting afraid to go to sleep. Melatonin at 10 mgs makes me sleepy but doesn't stop the headaches. caffeine kind of helps but they come back, same with cold air, and i'm exhausted. Right now I'm not in real pain but I feel quite a bit of pressure near my left eye. So, hurting and very worried about my job...

Hi Leea,

As soon as you get the proper meds to fight back against the headaches then everything associated becomes a little less daunting including your work and social life.


Lefty..!

Welcome Leea
   Hang in there
            We are all here for ya.       lorac

hi leea.  take a peek at clusterbusters.com 

i'm not saying anything, i'm just sayin', if you know what i mean.

some people have great success, including me and as with any medication there are the do's and don'ts.  the website covers it all.  --shaggy

I'm not saying nothing either.....except the success rate from that Clusterbusters stuff is pretty phenomenal... ;)

Joe

thanks again everyone!! Last night I slept well, woke without the pressure near my eye and it remains gone! Am  hoping it stays that way, I need to go to work tomorrow!!!