this past week I was diagnosed with cluster headaches after having them for about 3 weeks. As I'm sure you all understand, I have been completely miserable. I get them roughly 10-15 times a day and have not been able to lessen the pain, or even sleep. I went to the doctor and explained how I felt and she sent me to the ER. She said my blood pressure was sky high and in stroke range. I am only 22 so this worried her. I was given a CT scan to make sure I did not have an aneurism, which luckily I did not, and was diagnosed with cluster headaches. I was given Sumatriptan Pills, but it hasn't helped at ALL. I'm going back to my doctor in the morning but I dont know what to do until then. I'm pacing around, crying holding my head and driving my husband insane. Does anyone know of anything I can do to help me either sleep or not kill myself in the next 9 hours?

Oxygen is what you really need. Aborts the attack in 5 to 10 minutes. Saves lives! Read the oxygen info link, print it out to show your doctor, and do not take no for an answer!
Sumatriptan pills are for migraines, we need the injections.
If you have any melatonin in the house take 9mg to 12mg to hopefully lessen attacks and help you sleep.
Do you have any energy drinks, the combo of caffeine and taurine can knock them down, or strong coffee if nothing else.
Also cold and hyperventilating, may sound silly but if it isn't cold enough outside... bag of frozen peas, stick your head in the freezer and hyperventilate.

My headache is gone at the moment, but if I feel another one I will try one of those things. We don't have energy drinks, but I do have coffee and a freezer. Thank you!!

Another good document for your doctor (and you).
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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
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Your doc does not know how to treat Cluster. Sending you to the ER is one of the least useful things to do. The pill form of Imitrex is the least effective formof this excellent med.

SO--if at all possible, find a headache specialist.
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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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Please move quickly! Without a skilled doc you don't have access to the most effective treatments.
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When you are able, start learning. The more knowledge we have about this rare disorder, the better position we are in to evaluate the doc and their ability to help.
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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]
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Print the PDF file, below. Use it as a tool to disuss treatment options with any doc you see.
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Three sites which are worth your attention: medical literature, films, plus the expected information
about CH.

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

But all of this material is second to finding a good doc!

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Bob is spot on. A doc who doesn't know anything about CH is a recipe for many years of hurting. Let us know what part of the world you're in, maybe someone can refer you to a neuro close to you that knows CH. Here is a link to US doctors who other CH sufferers have recommended:

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Hang in there. I've wrestled with the beast for 35 years, he can be beaten.

Joe

10-15 times a day is VERY high for cluster- even the most extreme cases. You really need to see a headache specialist who is trained or knowledgeable in cluster headaches to make certain that you have clusters and not something else.

That being said, the sumatryptan pills didn't do much for me either. The injection kits are what most people use, including myself. But at 10-15 times a day, I'm not sure if that would even be a practical treatment for you. Oral steroids like prednisone are often used for a short period of time to help keep the headaches down while preventative meds like verapamil and lithium build up to therapeutic levels.

Trust me when I say that you are going through the worst of it right now. Hang in there, keep reading and arming yourself with knowledge.

Thank you all for your advice. I went to see my doctor this morning and told her that the medicine wasn't working and that I've been having SO many a day. She is setting an appointment with a neurologist for me,  and said i should get in in a week or two. She also gave me a new perscription, Butalbital/acetaminophen/caffeine. Has anyone tried this?
But what helped was she gave me an injection of something (dont remember the name) It took about 5 minutes and now I am floating on cloud nine!!! Feeling AMAZING!!!

Quote:

(dont remember the name)

I'm going to suggest that you keep MUCH better track of what chemicals they're pumping into your body. We can't help you or even comment intelligently if we don't know what's working and what's not.

Sorry, I checked and the injection was called Depo-Medrol. It was very helpful.

That's prednisone, a steroid with mega-anti-inflammatory properties. No wonder you're feeling better.

The downside you can only take it for short bursts of time lest you mess up the rest of your body.

Amanda Pennington wrote on Sep 27^th, 2012 at 1:21pm:

She also gave me a new perscription, Butalbital/acetaminophen/caffeine. Has anyone tried this?

Those are fiorcit.  Was prescribed them my very first episode a long time ago, until I saw a neuro, who got rid of them first thing.  They worked okay for awhile on my first ever episode, but then stopped working the next, leaving me screwed. 

They could tide you over until you see the neuro, but like drugs, butalbital can make you stupid.   Usually takes a friend to tell you though.  :)   Not good to take when you're getting hit multiple times day and night, because you keep taking them.

Oh!, oh!, oh! Your doc just confirmed my comment about her skills. This combination is for tension headaches and migraine. Absolutelly no benefit for Cluster.

***Please call the neuro's office and directly ask about his experience with complex headache disorders. Formal studies show that most neuros have remarkably little education and experience with headache. Don't accept assurance that, "the doctor treats headache". Ask about is training/experience with Cluster. If your primary care doc doesn't appreciate the need for special skills & knowledge then her referrals make be equally weak.

You have moved into an area of medicine where self-interest requires that you be assertive.

Unfortunately I only have two doctors in the state that are listed on the OUCH website, and neither are accepting new patients. Also- I'm going to have to wait until november 23rd before I can even get into see the doctor I was referred to. :(

Then go back to your doctor. Print out the info from this link and tell them you MUST have oxygen at home. I abort my attacks in 6-8 minutes breathiing pure 02. Works for the majority of patients who try it. The keys, high flow, at LEAST 15 LPM, a non re breather mask, and get on it at the first sign af an attack. Oxygen should absolutely be your first line of abortives:

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Timer to be assertive, do not ask for it, tell your doc you MUST have it.

Theen tell your doc you need to be put on soime kind of a preventative to get you thru to your neuro appt. Print this out and suggest this as a first try prevent:

A widely used protocol. Your doc will recognize the source and author:
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).

=======================================
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


This will help you corral the beast until you can get in to see the neuro. Call the neuros office every day asking if they have had any cancellations. It's a good way to get in earlier and it lets them know these are not annoying little headaches but life changing throbbers!

Joe

I took fiorinal...(butalbital) in the early 80's, actually helped a little bit but as Bob said, is all the evidence you need to know your doc is NOT up to date on CH. Help them learn. ;)

Joe

Ok, I will try both of those things.
I'm not usually an aggressive person, but I guess I will have to learn to be if I ever want relief.

I hear you, I am not by nature the pushy type either. As you learn the general lack of knowledge, and sadly the lack of interest, in so much of the medical community, you realize how critical it is to educate yourself as to the highest percentage treatment options, and learn to be your own best advocate. We'll help you all we can. Have you visited our sister site, clusterbusters.com      alternative treatments outside of mainstream medicine. Worth a read thru.

Joe

Nobody expects you to be aggressive.

But you must be assertive (there's a difference). You already know more about this condition than your doctor does, and if you don't go to bat for yourself, who will?

Amanda Pennington wrote on Sep 27^th, 2012 at 4:39pm:

Unfortunately I only have two doctors in the state that are listed on the OUCH website, and neither are accepting new patients. Also- I'm going to have to wait until november 23rd before I can even get into see the doctor I was referred to. :(

That was #1 below, try 2 and 3 also.  November 23rd is a LONG time in cluster time.  If you find another neuro willing to treat you sooner, mention the LONG wait to your doc for the one she referred you to and see if she'll refer you to a neuro you could find, out of kind necessity.  It's another way of being proactive.  :)



Quote:

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.

The Chronic Headache and Migraine Institute I found nearby here was an extension of a big name hospital group in this area, staffed with drs and neuros who treated clusters.  They didn't require any referral to go there, nor did my insurance.  I just made an appointment and went on my own.  Could be you've something like that in you area.

You need to start getting some real treatment ASAP. For me, even waiting until the end of the week to see a doctor was almost the breaking point when a cycle has started. A Prednisone taper can be prescribed by any physician and I have had them prescribe it for me while awaiting a visit to the neuro to at least preserve my sanity. It wreaks havoc on my skin, but it preserves my sanity. Also, look into the Vitamin D3 regimen Batch has put together on this site. It's something you can start tomorrow and could reduce the amount and intensity of the headaches.