Hello everyone just wanted to introduce myself and talk about my experience with CH. My name is Ryan and im a 27 y.o male living in Dallas, TX. I am def a CH sufferer and until recently I didnt know what the hell was wrong with me. My cycles began when i was 23 or so. I remember waking up tossing and turning trying to relax just enough to get back to sleep only to keep looking at the clock every 10 or so minutes wondering how long this would last this time. Dreading knowing that I had to get up in a few hours to go to work. Sometimes the attacks would last 30mins sometimes an hour or MORE. Well I moved to Dallas and all the sudden my attacks went away. I though maybe the change in cities solved my problems. HELL NO...the devil shows its wicked wicked face once again. My cycle started a few weeks ago. PAIN PAIN PAIN. Sometimes I want to just chop off my head or stick a knife deep down inside just so the pain will go away. Last night I went out with some friends to a going away party. Twenty mins in there I am rubbing my temple, walking back and forth to another room, rubbing my palms hoping the pain doesnt get any worse, and it does. I had to tell my friends that I wasnt feeling well. IT DESTROYED A PERFECTLY GOOD TIME. I cried for about 30 mins all the while driving home miserable almost to the point of throwing up. I would describe this on a pain scale of 10. Well the headache went away about 45mins into it. I slept the night 2am-9am. Went to work ...(keep in mind i tend to pop 2 excedrin every 2 hours to try to ward the headaches away) well lasted all day and then had another headache about an hour ago. So here i sit 345am afraid to go to sleep knowing that I will probably be up crying in the new few hours.   :'(  :'(  :'( . Well if anyone would like to comment or give me some helpful advice short of killing myself let me know. Thank you
YOUR FRIEND AND FELLOW CH SLAVE
RYAN

Hi there Ryan

Wish you knew about us before.We had our convention in Dallas Texas july 11-july 13.There you could have met us.And also get answers on all your questions+more.

But of course we will try answer your questions as good as possible.Just fire away.

I am Svenn from Oslo Norway and is called The Mad Viking on the board.

We are all family here , so welcome to our family my friend and as i said.Dont hesitate to ask whatever questions you have and some of us will try answer them as soon as possible.You can also contact our family services if you feel thats safer then here in the open until you feel you know us better.  familyservices@ouch-us.org   .  There you will meet the best friends you ever have met.Linda is our leader.Then its Cathy , Jackie and me. Once again just feel free and contact us and welcome to our family here


Very best from

Svenn

Hi Ryan, and welcome.

Quick question: have you been diagnosed by a neurologist?
What you describe sure sounds like CH, but it can be dangerous to self-diagnose.
See a neurologist, get a diagnosis to rule anything else out and you will get proper medications.
In the meantime, stack up some Red Bulls and chug it down as soon as you feel a hit coming on. It can help tremendously in keeping the hit down, or even killing it. Have a pack of frozen vegetables on your painside.

I'm sure a lot of good people here will come with more and better advice. Just some ideas to get you started.

Painfree time to you,
Pascal.

Ryan,

Browse around this site and you'll get all kinds of helpful advice.  I just joined the forum a couple of weeks ago during my cycle and man did I find info on aborting this monster without drugs.  Definitely stock up on the energy drinks as the others said.  You can try the Melatonin (3 mg to start going up to 9mg) to prevent the CH during the night.  I tried this pumping exercise that The Spaniard posted in another thread and it actually aborted the CH for me everytime since I started doing it.  That may have worked at your party.  Since I have been diagnosed, I do have Imitrex on me at all times incase I have shadows leading to an onset.
As the others said, get to the neuro and get treated.  Maybe you can get scripts for O2.  I NO fan of the preventative drugs, but you might consider them.  

Good luck and wishing you PF days ahead.

Mine started at 18, almost 50 now, I remember the intense frustration I used to feel that there was nothing I could do to make them stop. You are episodic, like me, meaning you go through periods of time without headaches, only to start another "cluster" of attacks. You have some jobs to do, CRITICAL  to establishing control over the beast.

1: GET THEE TO A NEURO!!!!! There are too many effective tretaments available to just sit waiting for attacks.

2: Get on a good preventative medication while you are "on cycle", that is getting headaches. A prevent med is something you take when  you start getting headaches, in the hopes of reducing both the frequency and the intensity of your attacks. I use lithium, 1200 mg a day, blocks up to 80% of my attacks. Other popular prevents are verapamil and topomax. many more to read about on the meds page.

2: Get a good abortive med. The headache has started now what? Your first line abortive should be oxygen. Breathing pure 02, at a high flow rate, using a NON RE BREATHER MASK, started at the first hint of an attack. I can abort an attack in as little as 6 minutes. Other great abortives I've used are imitrex injectables, also available in a nasal spray.

That's the basics. There is no pill yet that will stop an attack. Get off the daily excedrin, thins your blood and will eat holes in your tummy after awhile. You can't cure CH, (not yet anyways but we all keep hoping!) but with a little work you can manage the condition so you don't have to sit there and cry wating for it to come. And no shame in the crying, every damned person on this board has been there done that.

And this is probably the most important point, and sometimes the hardest for our younger members to get. You MUST educate yourself and work in partnership with your doc to manage your treatment. Ploppping your butt in frot of a doc and saying "fix me" is pretty much a guarantee you will hurt a lot. Everyone is here to help you, let's get you on a decent regimen.

Guiseppi

Critical that you find a neurologist who has experience with complex headache disorders. We have had too much experience with docs who know less than we do!

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.
=============

Go to the kink and print out the article. An excellent introduction to Cluster, symptoms, treatments, etc.

 
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 best overview articles I've seen. Suggest printing the full length article 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]

Hi Ryan!

I am new here as well and just want to say welcome.  I have done my share of crying.  They told to do a lot of reading on here and the links that are listed and I have.  There is a wealth of info that is so helpful, I have been encouraged by all of them here and know that I am not alone any more.

Please, take a look at the O.U.C.H site, they have a great list of neruo's that are recommended by other CHers. That is where I found the one that I am getting an appointment with.

Ask questions, the people here are SO willing to help. Plus, I will be watching and learning along with you.

Kathleen
Wichita, Kansas

HI Ryan

I don't have much to add - others have given you great advice and words of wisdom!   Just wanted to say welcome and tell you that we're here to help-  CH really sucks but its manageable-  you'll get through it- sounds like you have before-

Definitely talk to a neuro about preventatives abortives and oxygen.  Someone mentioned (Maalstroom I think)  our great secret - Red Bull - really any energy drink with 1000 mg of taurine has been known to knock down a HA for me and others-  Chug it at first sign of a headache.  

Also-  gulping down two large cups of black coffee has stopped many a HA for me from ramping up

Print out the medication info and get yourself to a doctor as others have stated.  You'll feel much relief and start to feel more in control of this thing once you are on the right meds and in less pain.  

Hang in there !  We're listening

Kelly

hello, coach bill here 40 male from cleveland. We all have cryed at some point, god knows i have, i normally start balling about 30 minutes into a hit, it just seems hopeless at that time. i learned how to live my life between the hits now. If someone was to tell you that you would never get another CH as long as you live im sure you would scream and jump up and down for joy, well i will tell you now, you wont get another CH headache untill ???? so live!! jump up and down man cause your cluster free untill??? in the meantime you better learn some of these tricks here that will help you because you sound as if your out of the now as far as treatment goes. tylonol is worthless, try oxygen treatment. as well push-ups!! as soon as you start the dance, get down and do 25- push-ups, it has worked for many here, then 2 minutes later do 25 more and so on.. its all about the blood flow, so its hard to focus at that time i know but give it a try after 5 minutes and about 75 push-ups you will notice something, and if not?? well then at least you will benifit from the pain, you can understand that right?? never give in to this shit!! you must always find a new way to beat it, or trying to.. never settle for this ever. good luck my cluster brother. Coach bill.

Welcome to the mad house. Here is something I hope you have some luck with. It worked most of the time for me.

                                         Dr. Wright’s Circulatory Technique:

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. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. 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. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.

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.

I used to try to imagine I was pushing blood away from my neck 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.

Charlie      

Yep, we all do our share of crying.

But finding clusterheadaches.com was a big step in the right direction for me. Sadly, I only discovered the site after I'd been diagnosed by my neurologist.

Classic cluster symptoms. If only I'd known before...

Anyway, I've found loads of advice here. But you soon realise that CH follows its own rules.

Now, thanks to CH.com, the first thing I do is knock back an energy drink. I'd never have thought that something so simple could have an effect, but it does.

OK, it's no permanent solution, but it's something to have in the armoury. I'd never have found out about it if it hadn't been for CH.com.

Read and learn.

Ian

The night hits  ( to me ) are the worst. Man... I've tried going to bed setting up, anything, whatever. Sometimes the O2 isn't quick as the trex at night, but during the day O2 is my buddie. I've even named him "Oxy".

O2 is my buddie. I've even named him "Oxy".

So if it was a dumb tank would it be an "Oxy-Moron?" (I kill me I really do! ;D ;D ;D)

Guiseppi

(With deep apologies I'm bored at work!)

the only thing i might add is consider getting away from the excedrin as it is very good at causing rebound headaches, at least for me.

oh and welcome, this sight is a great place for learning,crying and helping.

karl

Nothing to add that has not already been said.  Welcome to the group.

Get some O2 and use it properly -- it can be your best friend.

And WATCH out for the Excedrin -- it can be great every once in a while, but can cause rebounds when used too often. (Damned if you do and damned if you don't -- but be careful with it).

You MUST be your best advocate with these things. Read, Learn - go to your doc armed. These things HURT, but you don't have to hurt any more than necessary. Keep your arsenal of weapons (Red Bull, frozen peas, O2, etc) handy and at the ready for when the Demon visits.

Welcome to Clusterville. You'll find we're a tuff bunch of old cooties around here. We KNOW how you feel and are here to HELP you fight the BEAST.

Hugs BD

Sorry you are here but Welcome.  I was in one sense one of the lucky ones in that I was dianosed on first visit to neuro, but my abortive treatment has been a joke. Barb's and maybe other's advise is absolutely critical (read, learn and be armed [informed]) because unless your neuro is learned on CH he can send you around the world with worthless drugs etc. and may not prescribe O2.  I think others may have said, but if not I think you are going to find sooner or later that O2 is going to be your first and best line of defense and with high kips 8^ you may have to have triptans (imitrex or zomig).  Various preventives work for some people, litium, verapamil and topomax, but all of these come to some with side affects, which again affect people differently.  Some people have good results with prednisone tapers.  Again read read read.  The hardest thing to do when being hit, but maybe the most important is staying calm, so if there is anythin you can do to help yourself to stay calm then practice this. Don't dwell on the time of pain, but the time you are PF.  Here's wishing you PF days soon. Wishbone.