first i wanna thank everybody that contributes to this site,so to start off with im a 40yr old male who's life is under seige,im not sure if these are cluster headaches or not but here is whats going on,about 3 weeks ago i started getting a headache 1-2 a day always on the right side of my head in my temple,the pain omg the pain first of all i like to think of myself as a tough guy who can take a lot of pain but this is to much,by looking at your pain scale chart on this site mine is always a 10  :'( i cant handle it anymore,im depressed i havent sleep in 3 nights just thinking about the next attack,when i have one it comes on very fast and i cant sit still,i go from heat pack to cold pack to 1000mg of tylenol nothing works the pain is so intense feels like what a brain anurisum would feel like then after about an hour or hour and a half of suffering i always fall asleep and i wake up and its pretty much gone and all i can say is thank god its over and im very exausted and depressed.....does this sound like cluster headaches......i been laid off from work and i dont have insurance so i cant afford a doctor right now,couple other questions on the lingo in here what is the monster and shadows and hmmm forgot the others lol anyways thanks for reading my jibbersh as i sit here typing and no sleep for 3 days.....peace

ok now im getting nervous i did that ch test and it says i probaly dont have ch,here is my symtoms again pain always in right side always in my temple not in my face,worst pain ever had,cant sit still,comes on fast,no longer then 2 hours,feel like i need to puke,cant stand noise or light,cant sleep,very drepressed,always thinking about the next attack,at the end of the attack i fall asleep for a few minutes then wake up and its gone,dont get the droopy eye,ok some things are like ch and some like a migrane,im starting to think i have a tumor or something

The problem is that there are a multitude of headache types and it takes a skilled doc to sort out your experience. In an often cited report, one study showed that it took about 6-years for many cluster folks to get an accurate diagnosis and, therefore, appropriate treatment.

Suggest you find a good specialist--not just any neurologist (who often lack any significant training in headache). Get back if you don't have any options.
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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.  Call 1-800-643-5552; 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.
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Given the $ limitations, see if this article helps and get back with specific questions.
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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]

Listen to Bob.
Get to the neurologist
the bb

ditto!  

I understand the no insurance route, and the being out of work problem.  However, if it is something worse than CH, and yes there are worse things, you need to get a handle on it NOW, not later.  Call the Drs. business office, explain your situation, and ask if there are any programs that can provide help.  There are, but they vary from area to area, and from Dr to Dr as to whether they will accept them.

If it is CH, Tylenol won't do anything but ruin your liver and kidneys.  You might try slamming an energy drink at the first sign of an attack.  I really hesitate suggesting that with you not being diagnosed yet, as I don't want to make something else worse.  You be the judge of that.  Strong black coffee will also help me at times, but you have to get to it quickly.  don't just sip it, but rather slam it down as quickly as you can drink it.

All the best.

Jerry

Hey Stully, Sorry you're having it so rough right now.  It sucks but there are answers out there for you.  Unfortunately it might take a little bit get it all sorted.

In the meantime, take a look at some of the solutions here:

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

There just may be a few tricks to help you bottle or at least dull the beast while you figure out how to get treatment.

Good luck and let us know how it goes...

-Dennis-

When I first got CH I didn't notice the runny nose and messed up right eye either - I guess it was the #10 pain distracting me from noticing.

Anyway, like the other guys said, do some homework and figure out a way to be seen by a professional. I'm pretty sure one of the first steps in diagnosing CH is ruling out something that will show up on an MRI or CT scan.

Anyway, pain is pain. It doesn't matter how tough you are - these things are a butt kicker, especially unmanaged. I feel for you and wish you the best.

It's possible it's CH, or one of a hundred variant headaches. There's always the small chance it's something more sinister. Any sudden, new pain in the noggin necessitates a visit to a doc. Keeping you in our thoughts, hoping you find relief soon. Headche pain sucks! ;)

Joe

thanks everybody for your kind words and help,i decided today to do something about it when i was woke up this morning with my ususal 9:00am start of a ch i went to the emergncy room the trip there was terrible my cl hit a 8 while i was stuck in traffic people were looking at me funny as i was squrming in my seat,well i made it there and checked in did all the paper work and the time i got back to see the doctor it was gone,the doctor came in i explained  what was going on what i really wanted was something goooood to make me feel good for once a ct scan and a script for some ch medicine,well i got 1of the 3 first of all hey gave me a iv drip of toradal i asked the nurse whats toradal and she said liquid motrin and antinflam blahhhhhh didnt do anything except trigger a 10 on the rictor scale ch on the emergency bed omg i wanted to pace the halls so i hit the button to call the nurse she came in i was hyperventalating from the pain so i asked for oxygen i told them about this forum and how it seems to be the best thing for you guys on here so they agreed and i tried about 20 min of it untill they shut it off and brought me in for a ct scan which came out neg thank god so the doctor came in and diagnosed me with cluster headaches and this time i did notice it in my eye socket,i notice every symtom you guys have on here for ch but i puke every time a ch comes on,well anyways the doctor said i should see a neoroligist and he game me scripts for promethazine and butalbital not sure if this is what i really need and the little bit of time i was on the oxygen didnt seem to do anything,when i left the er i felt worse then when i went in,so brothers and sisters i guess im in the ch club now and look foward to getting to know all of you.....peace out....

btw how do i put a pic and smileys by my name :D

I'm not suprised the oxygen failed you. For me, I have to get on it as soon as I feel the headache building. The longer I wait, the less likely it'll completely abort the attack. Glad you got the scan and it came back negative. You always want to eliminate the "ugly" stuff! ;)

Okay, Butablbital, generic for Fiorinal. Be careful with that, it provided a little relief for me in the early 80's when I was still trying to figure this headache stuff out. It's potential for addiction is high, so monitor yourself. It's not a frontline treatment for CH for that reason.

Get oxygen prescribed to you. Even without insurance, it's fairly cheap. Score a regulator off of E-Bay, tanks rent for $4-5 bucks a month, refills cost you $12-15 bucks. Read the "oxygen info" link on the left as it must be used correctly or it's worthless.

Talk to your doctor about a preventative medication. That's a medication you take daily while on cycle to reduce the number and the intensity of your hits. I use lithium as my prevent,  verapamil and topomax are also popular prevents.

At least we got you a diagnosis, a big first step. For now, go buy some energy drinks, rock star, monster, any containing the combo of caffeine and taurine. Chug one down at the first sign of an attack. Many can abort or reduce the hit by chugging one down at the start. Welcome to the club! :)

Joe

Welcome Stully,

                 How was the 02 given? in the nose or thourgh a mask? Also there are many other signs of Ch that are tell tell. Do you get these HA at the same time each day?? have you Been woken from dead sleep at the same times?? Does your eye water?

                Anyway sounds like your on the fast track to getting some relief soon, and thats the main thing. Use this time to get all your weapons in check.

                               Coach Bill

hey bill yes i get my cluster headaches every morning at 900am they wake me up from a deep sleep so today i tried something differnt i got up at 730am and tried some things that people say have helped them first i took a half 25mg tab of phenegren and let it dissolve under my tounge,then i put some hot sauce under my tounge for 15 min lol it was to hot,i drank 3 glasses of water and chugged 2 red bulls lol so far so good its 400pm and no attack so far,crossing my fingers,and to answer your question about the oxygen i recieved it was from nose tubes while i was already in a full blown ch but Guiseppi said it probaly didnt work because i took it to late anyways im off to look at a car so lets hope i found something that works for me

[,and to answer your question about the oxygen i recieved it was from nose tubes while i was already in a full blown ch but Guiseppi said it probaly didnt work because i took it to late [/quote]

If you got it through a nose tube you didn't get more than about 3lpm, not enough to kill a CH for a gnat!  Read the oxygen info on the left of your screen.  You need at least 12-15lpm through a non-rebreather mask.  If you get any outside air at all it won't work.  You need 100% O2.

Glad you saw a Dr and had the CT.  I realize that's tough when out of work, but it is a lot cheaper than a stroke or anuerism.  

Keep us posted, and keep asking away as you are learning.  You can pay it back to another as you get more experienced.

Jerry

forgot to mention, PLEASE be careful with the Butalbital!  I too was given it in the 80's.  It didn't kill the pain, but I just didn't care.  Ended up almost hooked.  When I realized what I was doing I took myself off, but that was about the hardest three months I ever went through.  Now I'm paranoid about taking most any pain killer the Dr prescribes because I know how easy it would be for me to get hooked.

You might want to look at the Meds and Treatments section and search Kudzu.  Several of us have gotten some relief with it, and it is over the counter, and doesn't have the side effects I got from Verapamil.  

All the best,

Jerry

I'm glad to welcome you aboard but I'm sorry it's because of this horror. Your initial description sold me on clusters but I'm very glad you saw a doctor. Damn.

Anyway, yours sound a lot like mine were. I paced, wanted dark and cold....no sound either. I never felt like puking though.

Anyway there's a ton of good information here. Here's some from me and the price is right:

Dr. Wright’s Circulatory Technique

What follows is a technique learned from a neurologist:
I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working.

This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance.

I hope this technique is helpful and I wish you the best of luck

Charlie      

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE    omg this is me exactly the same way i sit and hold my head but i make differnt noises :-[