Hello my name is Roy. I believe i am a clusterhead....started getting them when i was about 18 and i am now 23. I have been getting them again since last wednesday after they went away and hid for 2 years. i hate when people compare em to migraines....and ive had migraines and i know these headaches are 100 times worse. I feel completely drained since i havent been getting much sleep. So far ive been getting them almost every morning and night. Pain is always behind my right eye. I wish someone would help me find some kind of relief from these  :'(

FIRST--read this message and see what kinds of info would help us so help you....

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

You can add your location by editing your profile. CP Member --> profile

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And, glad you found us! You'll find tons of help here...

We always tell relatively newcomers like yourself to get a firm diagnosis first by a competant headache specialist.  The reason Bob above is telling you to let us know where you live is NOT so we can be nosy.   We have folks here from over the U.S. as well as the world and it's possible someone lives near enough to you to help as well as provide a Dr.s name for you to call and make an appt. with.



Usually, we start treating CH  with a 2-pronged approach.   A good preventative and then an abortive.  Most swear by Verapamil or Lithium as a prevent.  and 02 as an abortive and Imitrex for those times when you're caught out in public or something and need to get rid of the HA FAST!!!!!!

Until you can get a prescription for pure 02  try breathing deeply from an A/C vent in the house or the car.  Buy some of the energy druinks like Red Bull or Rock Star and chug it at the 1st. sign.  The caffeine and Taurine act together as a fairly good abort.  Try ice packs too.  Anything that is a vasoconstrictor is what we need.

Give us some information so we can help you Roy.  That's what we're here for.   :)

Linda

ihateclusters wrote on Jun 7^th, 2011 at 2:31pm:

I wish someone would help me find some kind of relief from these  :'(

Man you came to the right place!

The advice above is golden, and here are some more ways to kill this beast - or at least beat him back significantly:

You getting night hits that wake you? Some are reporting that melatonin 9 to 21 mg before bed will prevent those.

The clusterbusters.com approach. This can be an incredibly effective preventative. It certainly has Harvard Medical's attention. Here's a Newsweek article about clusterbusters: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

There's a relatively new topic here regarding a high dose vitamin D3 regimen where some are reporting impressive prevention results. here's the link: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Linda's tip about breathing freezing air through the nose from the blasting car A/C vent at onset of attack is a favorite of mine if I'm stranded with no O2 or other abortive. One other thing along the same lines that can work is to exercise extremely vigorously at onset 'til you drop.


(Agreed BTW about the migraine/cluster comparison thing - I've had 'em both too)

Thank you guys for the advice. I will try every step given. I was given imitrex yesterday. And tried it last night and it did nothing. Didn't help at all. Today in the morning I felt like I was going to get another ch and drank a red bull and it helped up until 430pm. That's when I felt the beast coming back. I bought vivrin(200mg) caffiene during lunch to try. So I chewed it up when I felt it coming back. It helped only to relieve the pain but not to abort it. Just got outta bed maybe about 20 min ago and it is now 10:50pm and I can still feel a little pain but still bareable. I am so happy I found this site with so much info. :)

Hey Roy,

There's an equation that plays out here incessantly that goes something like this:

Imitrex pills don't work for CH

+

Imitrex inhalers and injections do work for CH

= Doctors are clueless because they still routinely prescribe the pills.

Were you prescribed the ineffective pill form per chance? If so, you're among hundreds of others here who've been handed this bum prescription, and it would be really good to switch out your doctor for a headache specialist if that's at all possible.

(There are rare individuals for whom even the injections don't work, but from what I've seen, that is rare indeed)

Side note: although caffeine can help with CH, it sounds like you're finding out the same thing that many others report - the combo of caffeine plus taurine found in energy drinks is more effective than caffeine alone.

Bejeeber....yes I was prescribed imitrex in a pill form. Dr seemed clueless and said that it sounded like a migraine becuz of how I explained it. I know for a fact these aren't migraines. I was reading on here and over on clusterbusters.com about taking vitamin d3. I'm willing to try anything at this point :(

Roy...I am a newbie here as well.  The folks on this site are great and will go out of their way to help.  Definitely get the 6mg Imitrex injections, it really works amazingly fast for many people.  I just started O2 therapy last week, and I was surprised to find that it really works.  I went into the O2 therapy as a skeptic,  (it seemed to simple) and was thrilled to find that it worked.  Best of luck keeping the Beast at bay, you are at the right place.

It's really cool when something so "simple" as O2 therapy is so profoundly effective, huh?  As to the imitrex injectables, read the imitrex tip on the sidebar to the left. This allows you to use the 6mg autoinectable as a set of 3, 2mg, self injectables.  It stretches out the trex since for most of us, 2mg is enough to abort the hit. I would pretty squeamish at first about poking myself with the exposed needle, but it's so small you hardly feel it and it only stings a bit when pushing the trex med through. Feels to me like a mosquito bite and then even that goes away. Best of luck and God bless. lance

If you are REALLY sqeamish about the injections, ask for the nasel spray instead.  It takes a few mins. more to work, but it's still pretty fast relief.

You've received the first lesson: find a doc who knows!
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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Starting learning....




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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When you see a doc, the PDF file, below, outlines the most common treatments. If you don't see these coming at you, time to be cautious....

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so ive been trying imitrex in a nasal spray and i only helps to abort the pain after about and hour and a half. better than have it for 4 hours. Morphine......no good. ive been taking 6000UI of vitamin d3 every day....dont know whether i should be taking more. im at about 137lbs.5'8". also was prescribed fioricet which i took about 15 min ago....and i just feel "buzzed" lol. I have an MRI appointment for monday. Yesterday was when i picked up my nasal spray at about noonish and took the fist dose at about 1:45pm. It was able to take the headache away almost all day up until about 10pm when i felt it coming on....took the nasal spray after about 5 min of having it being almost a full blown attack. H.A didnt go away till about 11:45pm. oh and another thing. im also on prednisone every day. for 5 days starting wednesday. Im losing my mind here. and to make my week worse. someone decided to egg my new car :/

-Roy

one more thing....to the guys....ive noticed a decrease in "morning wood" dont know if that has to do with low levels of testosterone.  :-/

so quick update. i stopped wearing my glasses for two days starting sunday. No headaches sunday and monday all day till about 1030 last night. Ive been given vicodin,motrin,tylenol w/cod, and so far last nght the beast returned. im getting impatient with these drs not knowing what to give. maybe if they did a little research theyll be able to help. I have my MRI tomorrow morning and i will be making an appointment with a neurologist. I cant stand the pain anymore. Last nights lasted from 10:30 to about 4am. And it was a different annoying pain. More of an ice pick type pain. not to sure if it was becuz of the vicodin.  :-/

Narcotics are NOT a recommended CH treatment. For most of us it makes it worse especially after time.

Most Doctors are pretty clueless about CH so learning all YOU can from here and elsewhere is in your own best interest.

Don

Roy,

Don is spot on...  It's unfortunate... too many neurologists are clueless when it comes to treating patients with our disorder...  That makes finding a neurologist who will listen and work with you a winning combination. 

We're all wired differently so what works for one may not be effective for another...  and it can take a while to find a working combination of treatments to control the beast.

After 16 years living with the beast I've found that oxygen therapy at flow rates that support hyperventilation is the best abortive...  more reliable and just as fast as imitrex injections at a fraction of the cost and no side effects. 

I've also found the anti-inflammatory regimen is the best preventative...  Comments from CH'ers who have tried this regimen indicate it's 80% effective.  At less than 20 cents a day it's a healthy alternative to the very expensive and invasive med's typically prescribed for CH and there are no side effects.

Most of us who use this anti-inflammatory regimen are taking 10,000 I.U. vitamin D3 along with 3,000 mg. Omega 3 Fish Oil and 500 mg. calcium citrate.

As far as packing less wood in the morning goes...  Prednisone is likely the culprit...  it does a number on the entire endocrine system...  Coming off the pred taper and upping the vitamin D3 dose should do the trick...  That stuff is marvelous on a number of fronts...

Take care,

V/R, Batch