Hello! My name is Kaamila. I'm new here obviously. I'm from NYC born and raised but have been living in Greensboro, NC for 6yrs. My oldest memory of the pain from my headaches goes back to when I was 9yrs old. I was in an after school program and had the pain for about 2hrs. Very immense! I never forgot what if felt like considering I have had that same pain over the years. I am now just about 27yrs old. I was diagnosed with cluster headaches about 4yrs ago. I always thought I had migraines. Everyone in my family on my moms side has them. therefore I have been treated for migraines over the years, with no relief! I had been in remission for probably 2.5- 3yrs before moving to NC. I was 21 at the time and my God, the pain started just 2wks after the move, and 1wk into the new semester at my new school. My mom thought it was due to the move. I was given imitrex and hydrocodone that I can recall. the hydro made me sleepy. the imitrex was irrelevant. then the doctor tried maxhalt, an expensive form of imitrex. I believe they worked if taken early enough but then they stopped. problem was trying to figure out when to take them and when not to. They used to be about $20 for 9 orally dissolvent pills. then they went to 6 for the same price with instructions of "take every 2 hours not to exceed 3 in a day" -_- . anywho, i later started to go to the emergency room where they would give me shots of toradol and phenergan. I do get nausea sometimes. It was really bad back in hs. not so much so now. but the toradol was the best because it made me sleepy. this is the only time i could sleep off a cluster headache while at its peak. when the doctors at the school realized i had been to them just about every other day and the emergency room as well, they forwarded me to the headache and wellness clinic here in Greensboro. Dr. Alderman diagnosed me with cluster headaches at the age of 23. I went into remission just after starting a few medicines he put me on. one was a nasal spray called zomig. I went into remission again until I was about 24. Because I was now out of school and working full time, I had to find relief. I owe Dr. Alderman over $600 which i'm struggling to start payments because my school loans total about $1200 a month alone. I found another headache specialist who re diagnosed me here in greensboro. his name is Dr. Lewitt. He started me on prednisone which i can say, does shorten my cycles. I also gain about 20lbs which sucks cause i struggle with my weight. My support system is ok. My mom lives out of town and she wishes i come home to ny for  treatment. my bf massages my head for me during attacks when i can lay still, which is rare. I'm looking for treatments of relief of pain. I know there is no cure, but for working people like myself, there has to be something. people who have never suffered from this terrible disease don't understand how it paralyzes you from doing anything but pacing or rocking back and forth. i try pressure points regularly. I do it so much I don't even know if they work anymore lol. I think they do sometimes minimize the pain after it has reached it peak. Only if done right. I usually have to try 3 different pressure points but this doesn't always work. I'm just desperate. I've made an appt with Dr. Lewitt so I can start my prednisone treatment again. I really don't want to but I'm not sure what else works. And my appt isn't until 7/11/2011 so what do I do until then? i can't afford the frequent visits to the ER for shots of toradol nor can I afford to miss work. I need help! serious insight needed.

This Topic was moved here from Getting to Know Ya by Guiseppi.

Wow, welcome to the board. One of the more unusual cases in that you started so young, sadly we have members on the board whose children started even younger. :'(

I'm glad you have found doctors educated enough to recognize CH, that in itself is hard enough to find. It appears you have NOT found any versed in the more effective treatments currently available. There is no cure for CH. But there are a number of very effective treatments that will let you manage it, instead of letting it manage you. You either need to find another Neurologist, preferably a headache specialist neuro with experience in CH, or you need to educate your current neuro to get you what you need.

Read this link. Oxygen will abort my attacks in 6-8 minutes. It's one of the fastest, cheapest, most consistently effective treatments out there. But it must be used correctly or it will not work. The keys:

A non re breather mask, a high flow rate of at least 15 LPM, and get on it as soon as you feel that familiar tingle and tension in your neck. The faster you get on it, the faster the abort. If you try and drive to the hospital to get 02, by the time you get there beasty will be so firmly established 02 won't help much.

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Prednisone works one of 2 ways for most CH'ers. For a small percentage, a short burst will abort an entire cycle. For the rest of us it works as a temporary block from attacks. We call it a transitional med as it is typically used when you start on one of the prevent meds, Verapamil, Lithium, Topomax, etc. They are taken daily while you are on cycle, to reduce the number and intensity of your attacks. Most take up to 2 weeks to become effective in your system. The prednisone gives you some relief while they build up.

You have much reading to so on this board. We have found very few doctors have any idea how to treat CH. It's your job to learn as much as you can, and help them help you. For now:

Get some energy drinks. Rock Star, Monster, any which contain the combo of caffiene and taurine. Chug one down at the first sign of an attack. They are powerful vaso constrictors which is what you need to ward off an attack. Many can abort or at least reduce an attack by chugging one of these.

Under the meds section, read the post, "123 pain free days and I think I know why." One of the members of this board is heavy into research and stumbled on a daily vitamin/mineral combo that is helping many on the board reduce and even eliminate attacks. It's all over the counter stuff, cheap and certainly worth trying.

Finally we have a sister board which uses non traditional methods to treat CH. They have turned out some pretty impressive results for people when nothing else worked:

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That's a lot for your first response, I'm sorry if it seems a little over whelming. Keep asking questions, I've survived 33 years of these stupid things, been married 29 years, have 2 grown daughters, all while dancing with the beast. It can be done! ;)

Welcome home.

Joe

As always, Joe has given great advice and added much personal testimony to our ability to battle the beast. The only thing I could possibly add are two encouragements: first, absolutely read and study everything here. Overcoming CHs is your first and primary goal. O2 must be used as we describe to be effective but it is the best for the majority for whom it works, myself included.  Second, line up abortives in ascending order: O2 first coupled with energy drink; Zomig second, or some other abortive such as Maxalt or Migranal. Because these are expensive and restricted in monthly disbursement, you can modify the imitrex tip and apply it to the nasal spray by taking only 2 sprays per hit, and saving two more sprays for future hits. Zomig may come in all or nothing doses but Migranal gives up to 5 sprays per bottle. Also, stock up each month regardless of whether you are in cycle. This hoarding allows you to have a more comprehensive arsenal. Good luck and God bless, and stay in touch. lance

Thank you both for your input. I see maxhalt and zomig on here a lot. Seems like the docs are all on the same page. I was lucky enough to get my appt bumped up for tomorrow (thank God). It was originally 7/11. My doctor is one that likes to prescribe zomig and prednisone. I despise both for zomig is way too expensive and prednisone makes me gain weight. How easy is it to get oxygen prescribed? I wonder if I'll have to fight him for this.

When you see the doc in July he should put you on a long term med to prevent/reduce severity of attacks. Print the following and use it to discuss options with him; this approach is widely used.
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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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If it works for you, this med is rapidly effective in aborting an attack and is the least expensive abortive available which is consistently effective. (Doc can give you a sample. You'll know with 1-2 uses whether it's effective for you.) Also, print out to give him
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Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.

Rozen TD.

Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

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Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
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Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]

Well unfortunately we constantly see people coming on here reporting that imitrex doesn't work. And of the probably hundreds of such Getting To Know Ya reports I've seen it has always been because the wrong form of imitrex has been prescribed (maybe you're the first exception?).

Basically imitrex pills are for migraine and too slow for CH. Inhaler or injection form of imitrex are extremely effective for aborting hits for all but a small percentage of us.

If you're already well aware of the details of the above rant, sorry, please disregard.  :D

My Lord you have been given tremendous advice here right off the bat here from long time CH'ers who've been successful at combating this beast, and whom have spent countless hours observing what works for others . If you follow through on it, this will have a very high chance of bringing you tremendous relief. Heck just between Giusseppi and I know we have a combined 60+ years of experience with CH!  :o Add in the other couple guys and I bet we'd be well over a century.  :D

Many of us have tired of the drugs (and the suffering!), and enjoy some powerful yet non toxic relief, hence the popularity of the O2 as an abortive, the clusterbusters approach (which can be a more effective preventative than any prescription drug), and the high dose D3 regimen.

Check out this Newsweek article about clusterbusters, and let's get you out of this extreme pain and suffering rut that CH folk who have been entrusting the doctor's opinions tend to get into : START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

(And FYI people who haven't been able to get an O2 prescription have just gotten the same O2 without prescription from a local welding supply place)