this is my first post. Im 32 years old single mom of a beautiful baby girl. I have suffered with these damn things now going on 5 years. I started having them after a severe auto accident. When they first started happening I thought I was having a stroke or aneurysm. Then sitting in my drs office i came across a pamphlet that had descriptions of the different types of headaches when i came across the clusters. Yay i thought maybe relief. I was surely mistaken. He put me on beta-blockers the imitrex oral which will shorten the headache from an hour and half to 45 mins to an hour. Until then i suffer. I think the worst part of these things is u think u r going to die and then bam its gone but u know they will be back and there will more. Hope this site will give me peace. I am not alone and there are ppl who DO understand. Thank u my heart foes out to all who suffer

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            Potter

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Ideally, will be seeing a headache specialist. Far too many docs lack the training/skill to handle complex headache disorders.
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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. 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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If you have done so, some basic learning about CH will give you tools to both help yourself and a basis for talking treatment options with your doc.
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This outfit offers a number of titles, each covering a separate medical condition.  Good, Written in non-technical language. Broad coverage of CH--causes, treatments, etc. Worth exploring the sample pages.
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MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $50 at Amazon.Com.  It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....")


HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended.
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Imitrex oral is not first choice; it's too slow acting for CH. Consider using the injection form. Also need a preventive which will reduce the need for abortives.
See the PDF file, below, and the abstract which follows.
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Cluster headache.
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[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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Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.


    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).

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SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.

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What Potter and Bob said! ;)

33 year episodic sufferer here. Oxygen has reduced my attacks from 90-120 minutes, down to 6-8 minutes. I feel that familiar tingling and tension start in my neck and ear, start huffing my oxygen, 6-8 minutes later I am pain free, beasty is gone.

The fact that your doc gave you imitrex oral tablets tells me he knows absolutely NOTHING about CH. Oral tablets take far too long to be absorbed to be of much benefit to a CH'er, when our attacks typically progress from blissfully pain free, to "holy sh^% that hurts" in a matter or minutes.  Relying on him to help you, absolutely guarantees you a boatload more pain.

Read that oxygen link, get 02 prescribed. If your doc refuses, tell him he is 20 years behind on treating CH, move on and find a doc who will prescribe it. Refusing 02 to a CH patient is malpractice! >:( (rant over! :))

Then follow Bob's advice and locate a decent specialist. There are so many treatments available to make your life much more tolerable with CH. Oxygen, Imitrex injectables and nasal sprays, are all great abortives which will slay Mr. Beast in minutes. Verapamil, Lithium, Topomax, all prevents which help reduce the number and intensity of attacks for so many of our board members.

For now, grab a few energy drinks from the grocery store. I prefer sugar free red bull, but any with caffiene and taurine will work. Chug it down at the first sign of a hit. (I mean chug it like you're in college doing a beer bong, the quicker the better!) Many can abort or really reduce an attack this way.

Lastly, visit clusterbusters.com   a website dedicated to using non traditional methods to treat CH. Has helped some of our members when traditional meds failed.

Welcome to the board, your 45-60 minute runs are unacceptable, we'll help you change that. ;)

Joe

Tabs,
I see your post echoed so many times in the last couple of months of being a newbie here...
What is going on?
I started with CH 11 yrs ago and, just like you thought I had a tumour or something...
I wanted to do things to alleviate the pain that scared the shit out of me....
5 years ago I was diagnosed, 6 years of pain and fear.....


Quote:

I think the worst part of these things is u think u r going to die and then bam its gone but u know they will be back and there will more.

 

When you find out that they are NOT going to kill you was my worst part in the early days when the pain was behind my eye, where I couldnt get to it!

No Tabs, you're not alone here, we are all Brothers & Sisters in Arms at CH..Find the strength here.

Respect

Gary

I actually told my neurologist to f*** off 2 days ago when he told me that there was nothing he could do for me. I told him the imitrex didn't help and that was his response. Are you serious? I see my family physician tomorrow and he believes the o2 is my best bet. I do not know if my insurance will cover the o2 but ill give it a shot. I cant go to the er 3-4 times a day. And they usually want to shoot me full of morphine instead of giving me o2. They always treat it like a migraine. I would LOVE to have migraines. Thank u for ur support it does help

Do not worry about the cost of 02. A regulator will run you $20 or so on E-Bay. E tanks rent for about $4-$6 a month, $15 or so each refill, a decent mask will run $20. That's if you go medical, if you go welding oxygen, it's even cheaper. I paid out of pocket for years, well worth the investment.

Great that your GP believes in 02, a GP who will listen to what you bring him is just as good as a knowledgeable one.

Joe

Are you planning to find a headache specialist?

You're facing and problem--most docs lack training and experience dealing with complex headache disorders and yet you are not too far from from good resources.

Oh yes When I c doc I am going to ask for a referral the Diamond Headache institute in Chicago. O2 does not always work and I am not sure if I can give myself an injection. At this rate Im willing try anything. I do have a good GP definitely better then my neurologist.

Another excellent doc in chicago is Dr. Kenneth Moore, he was my husband's doc and he does know his stuff.

Carolyn

Alas another pointless trip to GP. He gave me relpax another pill that will do nothing help. What do I have to do to get him to give me a referrel to someone who will help. I love my GP he was my fathers dr. my daughters, my brothers, my auntie, my er dr for my accident. I dislike having to go to another just for a referrel but what choice does he leave me?

Welcome to CH.com Tabs, to me, a little under the skin shot is nothing compared to a full blown CH. I suggest you read all you can, and more, about CH so you know what the best treatments are. Pls read the following link.

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Wish you the best of luck,   Don

I too am a needle freak! I can't even look when the nurse takes blood or gives me a shot or I'll come close to passing out!

The stat injector looks like a ball point pen. You never see the needle. Push it against your butt, push the button, a little prick and the beast is in full retreat!

Joe

I am in prime headache mode, do not have log before i become stupid. Im trying. Im sorry if u cant understand me. I cannot. I canot do this anymore. Sometimes I think if u poke out my eyeball and stick a big rod in my nose itll go away. i logically know its not goona work i hate it. I know i need to be breathe, relax, it will pass. For now i hope

help its coming :( :( :'( :'( :'( :'( :'(

And I hate that it's coming. Deep breaths, you're bigger then the beast. [smiley=hug.gif]

Joe

the walk and restlessness sits in  if i make no sense i sorry help me the crying bitch is here
i hate those pills hate em i hate em  :'( :'( :'(

plerase make them go away please

Batty wrote on Feb 13^th, 2011 at 5:25pm:

Tabs, [quote]I think the worst part of these things is u think u r going to die and then bam its gone but u know they will be back and there will more.

 

I don't know whats the worst, being new to them and wondering if your still going to be alive in the next hour or being an old hand and knowing exactly what you got coming

tabs0624 wrote on Feb 15^th, 2011 at 1:01am:

plerase make them go away please

:'( We can't. But you can. If you're reading this, Tabs, you survived the attack but you know the next one is coming. You need to re-read everything in this thread...act on it...find the O2, find the energy shots/drinks...get a new dr who will help...and if you have someone who will advocate for you, why not sign a medical proxy so he/she can demand O2, steroids, high level verapamil...anything proven to work.  It's time to run out the biggest guns you can. Please, for your sake, act now. lance

Sorry, I meant to add something but senility crept in and I had to run a search for this. The next er trip...have something in hand, a note, that med proxy supporter, you screaming it...something which indicates you would like IV DHE 45 (dihdroergotamine). We haven't talked about it much lately, but it can work to interrupt a cycle. Not forever, but it beats the heck out of morphine drips. Check it out. Blessings. lance

Hi there Tabs
I so wish I could take em away for you, as I'm sure, does everyone. But it's the same for all of us, n all any of us can do is get the best treatment we can get to.
I've just gone through the most serious episode of a twelve or so year career with CH. I previously thought I had it cracked, as episodes every six months, but only five or six weeks duration, 3 attacks max per day, nearly always at night, with two guaranteed injections to go at.
This time its been the best part of four months, six to eight attacks per day, at the peak. No alternative abortive except my two needles a day, and they didn't always work. After the last CH a virtually constant background headache for the next three weeks. I'm just about pulled around.
I thought no one understood, then I found this place, a few weeks ago. It's been a big help, and I'm sure it will be the same for you. ;)
I have to agree with Guissepi, I'm totally freaked by needles, fainting if I look when I have blood taken. But the sumatriptan pen injections are no problem. You see nothing and feel little, made insignificant when you feel like someone is trying to rip out your eye!! :-/
You clearly need to keep the pressure up on the doc. But keep looking and learning on this site, n you might also have a look at clusterbusters, if you haven't already.
All the very best
Andrew