I was diagnosed with clusterheadaches about 6 months ago. it all started one morning on my way to work when i suddenly got excruciating pain behind my right eye. i drove directly to the emergency room where they did a CAT scan and of course it was negative. They said it was a migraine. this happened several more times before i went to my doctor who sent me to a neurologist. MRI found nothing. Doc said it was cluster headaches. I did have one episode after seeing the neurologist when i was driving home form work i had such pain that i contemplated suicide it hurt so bad. i was just going to drive my car into a tree. something kept me going i made it home and did a sumatriptan injection. and felt better about 15 minutes after. i have yet to have an episode that bad but was wondering if anyone else had the pain so bad that they literally wanted to die. i have never in my life had those kinds of thoughts. It scared me. now i am finding that the oxygen and ice packs are my best friends. my doc is wonderful and has been working with me. tried veramapil but that made me very dizzy and all i wanted to do is sleep. Am taking melatonin 10mg everynight. does anyone have any other suggestions for pain relief? I seem to have the chronic type. can go a month at the most without one.

At only 6 months into this, it is way too soon for you to even think about being chronic so just get that  thought out of your head.  :)   

It sounds like you have a good doctor who is willing to help.  So many here have had to go through many many doctors before they found one with some knowledge about this rare condition of ours.


Quote:

was wondering if anyone else had the pain so bad that they literally wanted to die.

I'm laughing here even though it isn't funny at all.  If you have read here at all about any of our personal experiences you will see how almost everyone has had these thoughts.  Getting yourself educated is of the upmost importance.  It will set you free and get you on the right road to treatment.   

Did this doctor give you a prescription for oxygen so that you have it at home?  Look to the left of where you're reading this now.  "Oxygen"   in yellow.  Read it like your life depended on it.  Most of us swear by it and it has helped more people to abort a headache than you will ever imagine.  Most of us can abort an attack if used at the first twinge of one coming on in less than 10 mins.

Get some energy drinks like Red Bull or Rock Star.  Anything with at least 1000mg. of Taurine in it and if your're at work or out in public, swig one down at the first sign.  Not as good as 02 but it helps a lot in a pinch.  Strong coffee, ice packs are two other things to try. 

Hope you stick around.  There's a LOT to read around  around here.  Information that even most doctors don't know about since this condition is so rare.  It's been gleaned from experience and from Neurologists who have worked closely with us through the years and you won't find a better informed, more caring group of people anywhere.

You're not alone in this.  You're part of the family that pain built now.  We're here to help.  Big hugs to you. [smiley=hug.gif]


Linda

Welcome Bonnie,

Yes, we know too well the pain we all must endure... I for on used to find it quite disconcerting to curl up in the fetal position while banging my head off the floor... ;)

I too am not making light of your situation, but welcome to our very dysfunctional little family.... It did not get the moniker of Suicide Headaches unmerited.

I used to detest that nickname, but fully understand it, and to the unfamiliar and uninitiated, it does get their attention... Perhaps it makes non-sufferers a bit more understanding.
Many of us come from a time when NO abortive methods were known... But the good news is 20 years later I'm still here.... If nothing we are a tough lot... Have to be.

Linda's advise is as good as it gets.... Knowledge is power over the Beast.

Sucks that you have to go through it... Hell it sucks that any of us have to go through it, but we do and we will and we are here for each other. Great group of people on this forum and a wealth of knowledge and experience... Read..read...read and ask questions.

We all have been there, but please know there are things that can make your life much, much easier. Oxygen is my go to and has been for years... Read up on it and use it properly, it was and is a real game changer for me and many of us.

Anti-Inflammatory regime... etc..etc.. Try as many options as it takes ... Believe it or not, I once thought I'd never survive... now I thrive... Good luck to you and hang in there.

All the best,

Baer

Got me crying... I remember that like it was yesterday... but it wasn't, it was 36 years ago. We are survivors.... and warriors. You may not feel this way now, but you are lucky to have found this site after only 6 months. You will gain lifetimes of wisdom and quickly get better at battling the beast.
Stay strong. XX

Hi Bonnie lee & Welcome Home

  I'm a "head trauma" CHer.  Now 64, my attacks started after I nailed my noggin 1/01 . . . attacks started  . . . CTs, MRI, non-working meds.  By the time my wife found this site for me 2/02, was having 6-8 attacks daily, sometimes 3-5 at night, all Kip 5-9, most 20-45 min and the occasional 1 1/2 - 2 hr horror . . . was a basket-case . . . afraid to sleep, afraid to eat, always in fear of the next one.  Cried like a baby when I came here and found  others who KNEW what kind of pain the beast gives out . . . and more importantly, had info I could copy, take to my doc and start to have some control over this beast of ours.

  My first prevent was (like many) Verapamil . . . had my first PF day (in over a year) when I reached 240 mg (considered minimum effective dosage) . . . had three attacks that night, but had 02 to kill them . . . was a WONDERFUL day.  Re the Verapamil, got as high as 480 mg, then back to 360 mg maintenance dose which reduced the frequency/intensity of attacks where I could easily kill (most of) them with the 02.

  Now use water therapy, the D3 regimen as my prevents and energy drinks (I like Rock Star orange), 02 & icepacks as abortive.  He woke me at 4 am and was able to knock him out within 5 min . . . my objective is always to kill him before the "dance" stage.

  You mentioned you have 02.  What flow-rate are you using and what type mask do you have.  Since you seem to have a doc who understands CH, I assume you have a non-rebreather mask (the one with the bag) . . . would suggest ordering an O2ptimask with the big green 3-litre bag (links on the site - $27.50), which is much more effective than the 1-litre bag your 02 supplier will have in stock (which is what we all used til the O2ptimask, designed for clusterheads became available).  You should have a regulator that delivers at least 15 lpm . . . 25 lpm is better.  As you've probably already discovered, the key to aborting with 02 is to get on it at the first sign of attack . . . just a few minutes delay can mean a much more severe and longer than necessary attack.

  At the top of this board, under Important topics, there's a thread, "Letter to Colleagues and Employers" . . . copy and give to friends, relatives, boss, etc. . . . . can help give them a little understanding of what we go through.  The word "headache" just doesn't describe how intense they can get.

  Keep reading, keep asking . . . . so very glad you found us.

     Be Safe,    PFDANs

        Richard

A preventive med is quite important to use and there are options to Verap.

Print the PDF file, below, and use it to discuss options with the doc.

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Thank you all for your responses. it really means alot to know that i am not alone. I have been using oxygen 10 liters for 15 to 20 minutes via nonrebreather mask. I have it delivered to the house and i am a nurse so thankfully i have access to it at work if i need it. I have found that it helps alot as does the ice packs. Its funny that everyone has names for their episodes. I always say that i am dancing with the devil. I hate him and i dread for him to come and visit. And you never know when. But it seems that mine come on weekends. not every  weekend but when i get them 99% of the time thats when they happen. I asked my doc about the red bull energy drinks because i see that alot of people on this site say that it helps. He said he never heard of that and the only thing it would do for me is keep me up all night. But i am going to try it anyway. At this point anything that will help is worth a try. Oh i forgot to add that i also have indocin and i take melatonin 10mg before i go to bed. Thanks again for your replies.

Read the oxygen info link on the left. My aborts run 6-8 minutes, I use a demand valve, many have found that by kicking up the flow rate, some go up past 25 LPM, they have cut their abort times in half. The trick is hyperventilating at the start of an attack. Be nice to cut some time off your pain.

And the weekend attacks, very common. We have one board member whose moniker is "Never ever ever relax!" Tension is almost a prevent med for him, as soon as tension lets up, and he begins to relax, WAM he gets hit.

The energy drinks have worked for many. It needs to contain the combo of caffiene and taurine, and you need to chug it at the first sign of an attack. I drink a red bull, while i abort with oxygen. Seems to speed the abort and pushes back the come backer attack.

For a prevent, I use lithium when on cycle. At 1200 mg a day it blocks 60-70% of my attacks, and has very little effect on me that anyone would notice. Certainly worth a chat with the doc.

Joe

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
BUT, Please!, don't post your messages at this location. They won't get the attention you want: use the appropriate sections which follow.
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If you are not seeing a headache specialist, making a move to one would be best--if at all possible. Most neurologists have very little training in complex headache disorders. You guy's intentions may be best but I'm looking for him setting up a coherent treatment program for you and it doesn't come across yet. So,

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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When you are new to a problem and the pain is hard, the temptation is to try this and that treatment. This approach lacks the coherence which we need, i.e., a med which gives immediate relief, followed by a med which reduces frequency/intensity of attacks, plus second line methods which take the edge off less severe attacks.

Starting exploring the buttons, left, starting with the OUCH site. Then read some solid material to give you a good picture of what you are trying to learn to control.
--



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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Also,

A couple of sites which are worth your attention: medical literature, films, plus the expected information
about CH.

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

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

Bob I am from virginia. 14 miles south of washington DC. I live on an army base called Fort Belvoir. My husband is in the army. 

Joe, I will ask my doc about the lithium. He is a wonderful doc who is cautious about giving me meds i dont need. But if i ask for something he will most likely say yes. the oxygen has been working for me with the 10liters for 15 to 20 minutes.
Thanks for the advise. I am going to try the red bull and see if it does anything for me even though the Doc said No.

Hey Bonnie lee. It isn't surprising your doc has not heard of our energy drink success. Maybe you could point him to this site? Anyway, the success reported (mine included) seems way too high to be merely anecdotal and accidental. For whatever reason, when coupled with O2, it works miracles for me. You could also benefit from the Vitamin D3 regimen so many have adopted. It's at "123 days pain free..." and while there are very many posts, it's good reading. You will and can manage the beast. Happy hunting and God bless. lance

Hi Bonnie Lee as I read I just wanted to cry I've been to the edge and realized that some day I would turn the key with just me and the car in a closed garage. I started putting pictures up all over of the people who would be affected by my ending the pain in that manner. I've gotten through 35+ years this way and just this spring I found this site and started the D3 regime, it does take a couple of weeks but O2 and energy drinks aborted the hits during that time. Energy drinks never kept me awake as the headache leaves you exhausted. It is the most wonderful thing to finally be pain FREE and get life back. Please read the 123 pain free it has given me hope that I won't ever have to stare at those pictures with anything but happy thoughts from now on.