Hi Everyone,
A brief background;
Cluster headache sufferer.
Date of onset-Fall 1970 15 years old. Began treatments around 1980 when the pain became more than I could handle. Took various meds which I can't remember what they even were. Always episodic. Longest period without being in a cycle 5 years. Spent hours dealing with the excruciating pain that you all know so well. Around 1994 I was given Imitrex cartridges. This was my salvation! Whether I was awoken in a full blown headache, one shot eliminated the pain within 5 minutes. If during the day when I felt the aura of the headache to follow, one shot prevented the pain from coming. In conjunction with prednisone and verapimil, my cycles lasted usually 2 months. Also tried oxygen treatments both at home and in the hospital, but to no avail or relief. Was changed from prednisone to Lithium Carbonate 300 mg 2x daily with Verapimil ER 240 MG 1x daily in 1999. Recent cycles 1998, 2002, 2006-usually lasting 2, sometime 3 months. Am in a cycle now which began 5-1-09. Began same course of treatment as before and tried oxygen again-didn't work. Now, the Imitrex is no longer working. Am back to pacing, hot-cold showers, pounding my temple area, neck rotations, having my wife walk up my back, lifting a chair over my head, cursing the pain, jumping into my cold pool, etc. I am getting at least one 2 1/2 - 3 hour headache per day, and about every 3 days I am getting 2. I see a neurologist in 2 days. Because the Imitrex had prevented these painful episodes for me for the last 15 years, I haven't kept up on any advances. The computer screen is hurting my eyes, so any advice, help, suggestions from those of you who know probably more than the neuro I will be seeing will be greatly appreciated. I just can't concentrate or process and research all of the info out there. Haven't slept for nearly 3 days, and am having those thoughts again about where the highest bridge is located.
With Much Appreciation,
Jay

Hi Jay,

Welcome!  I'm so sorry your tried and true solutions aren't panning out this time around.  Hopefully you'll be able to get it all sorted out soon.

I've heard that Imitrex can stop working. Personally I dread the day.  This is one of the reasons I try hard to limit its use.  Like you I'm episodic.  For me, Oxygen therapy works really well.  With O2 I'm down to just a handful of imitrex aborts per cycle.  

There are other triptans out there.  Maxalt MLT are tabs that melt on your toungue.  There is also Zomig nasal spray.

When you tried Oxygen therapy, what flow rate were you using.  I'm perscribed 12lpm but regularly use 25lpm.

What type of mask were you using?  It needs to be a non-rebreather type with no holes and a bag to collect the air while you are exhaling.  

No room air and a high flow rate are key.  Many folks that initially failed with O2 therapy found good results with some coaching and fine tuning.

Please check out the oxygen info on the left.

On the Verapamil front, 240mg sounds low to me - though there may be good reasons for this which only your Dr would know.  Please bring this info to your Neuro and discuss it with him.  Using this approach worked very well for me.

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Quote:

Individualizing treatment with verapamil for cluster headache patients.Blau JN, Engel HO. City of London Migraine Clinic, London, UK. 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

Good luck...

-Dennis-

Hi Jay.

Sorry to hear you've been a club member for almost 40 years.  Doubly sorry that your usual tools aren't working any more.  I'm not an oxygen expert, but ditto to Dennis' comments.  I often read threads like yours where folks say that O2 didn't work for them, only to find out that it wasn't administered in what is now considered the optimum flow rate.  As for other therapies, Imitrex tabs work for me, and Lithium worked for me in the past; haven't used it in years.  My new neuro is trying me on Topomax this year as an alternative to the Lithium so we don't have to monitor Lithium toxicity levels.

Hope you find relief of a medical nature soon.  No resorting to gravity!

Scott.

Thank you Dennis & Scott,
I was prescribed 10 lpm using a non breather mask. I had it delivered to my house and used it one time for 15 minutes. As each minute passed, the pain increased, but I wanted to give it the full time period as I really wanted it to work because I do not like to use medications unless absolutely necessary. And, at that time I knew a shot of Imitrex would end the pain, which is what I had to do. Having gone to the E.R. in the past to receive oxygen treatments during the acute stage of the headaches and leaving with no relief, and having gone to a respiratory therapist at the initial aura stage and still not getting relief, I concluded that I just wasn't one of the lucky ones who could benefit from this natural cure. However, I will bring up the 25 lpm, so that is something to look forward to.
As far as the dosage on the Verapamil, a change may be in in order. I would also prefer not to take Lithium. When I found the mixture of meds that eliminated the hours of painful suffering, I stuck with it. Today is the 1st day that the Imitrex has not relieved the pain. I have used the sub-lingual, nasal spray, and pills and none of those have worked.  
I appreciate you guys taking the time to respond so quickly to my new situation. After 15 years of being out the loop, I'm hoping there is more than there ever was before. I seriously don't think the health care system as a whole can even come close to understanding cluster headaches compared to any of us who experience them. I'd reach out to my cluster-mates before anyone else at any time.
Thanks,
Jay

Let me throw some reading to get you up to speed on current therapies.....
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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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Here is a link to read and print and take to your doctor.  It describes preventive, transitional, abortive and surgical treatments for CH. Written by one of the better headache docs in the U.S.  (2002)
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Michigan Headache & Neurological Institute for another list of treatments and other articles:

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As you have time, explore buttons, left, starting with OUCH and the multiple internal links.
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Hope your doc is a headache specialist vs. a neurologist with little experience/training in headache--a too often picture. If you haven't done so, I'd ask directly about your doc's background. If you want leads to finding a new doc, drop a line.
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As questions arise, let us know. Easier to respond to specific requests which meet your needs directly.

Glad to meet you but I'm sorry it's because of this horror. Some of your ideas are similar to what I went through as well. What follows is a technique that was very good to me. I hope you will try it as well.

Welcome aboard and it's good to meet you but I'm sorry that it's because of this horror. Pay attention to these people. They have some good ideas and even put up with me who hasn't been hit since 1991.

I wanted to say hi and post a technique that was very helpful to me:

Dr. Wright’s Circulatory Technique

What follows is a technique learned from a neurologist:
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. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. 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. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice.

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.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head 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.
I hope this technique is helpful and I wish you the best of luck

Charlie      

Thank you Bob an Charlie. Bob, I appreciate all the current info., and will print out that cite and bring it to my neuro. He is not a headache specialist as so few are. However he is in the same group with a Dr. who is a headache specialist but is primarily involved with research now. I used to see him years ago and he is dedicated beyond belief.    START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE  I have already contacted him to let him know I will be in tomorrow to see one of his partners, and asked if he would object consulting if necessary. When I awoke this morning, he had already written me back and stated he would do what he could do. I have another appointment set up with a nuerologist that specializes in CH's, but that is a month away. I appreciate your offer on providing leads for new docs & I may take you up on that if necessary. I know that I am going to have to become involved with reading up on what is new, and thank you for giving me some starting places. For 14 years I was fine with my regime, and the old adage if it ain't broke, don't fix it, but that seems to have changed now. I knew you sufferers, and those in long term remissions would be the best people to contact and am very glad that I found this forum and have met great new people in just 24 hours.
Charlie, your idea is certainly unique but plausable.  Blood vessels become vasodilated during CH's. The trigeminal nerve is activated. This causes many things such as the drooping eye, nasal discharge, and pain. Some people get twitches. Considering we are all born with the "fight or flight" within our autonomic nervous system, what you describe sounds like a way to practice or somewhat contol it.  During a dangerous situation such as physical harm, a mugging, a fight, etc. our autonomic nervous system kicks in. It is unvoluntary. The brain recognizes the danger and prepares the body for what is called the fight or flight reflex. Blood is quickly drained from the face and brain and transported to the extremities. Adrenalin is rapidly produced. The body is prepared to stay and fight or run away-flight.
When I read your info. it sounded as if it could be similar, an alternate way of decreasing the blood flow in the face and brain and carrying it to your extremities. This in theory should reduce the pain as the blood vessels would constrict. I'll save this for future reference. With all that is going on so suddenly, I can't do everything. But allow me to express my gratitude for this info. and the time it took you for writing it, And also for taking an interest in my situation.

Just another though here...  

Have you tried changing your injection site?  If you repeatedly use the same spot for injecting it will build up scar tissue reducing the absorption of Sumatriptan.

-Dennis-