So I've just signed up today but I've been reading the site for a while now.  I'm 34 and I've only been through 3 cycles so far and my last was over two years ago.  I of course was naive and thought they may be gone but I had a new cycle start right after the first of the year.  My previous two cycles were like clock work.  9:48pm every night for 3-4 weeks.  This time it's different.  I've had them all over the place at all different times.  I may skip a day then have 3 in a 24hr period and all of them are in the 7-9 range. 

    My GP has done a pretty good job of diagnosing me from the start.  He has done a great job of prescribing me all the right meds the only problem is they are always much lower doses than what is recommended on here.  Here is a list and how they have worked for me.

-Verapamil 180mg - much lower dose than what I see recommended on here.  I've got high BP so at least it's pulling double duty.

- Sumatriptan tablets - The first thing he prescribed and they didn't do anything.

- Sumatriptan Nasal spray 20mg - Worked, but generally seemed to just lessen the pain and drop a CH from an hour long to 25-30 minutes.

-Zomig Nasal spray 5mg- He gave me these as samples to try but I haven't used any of them yet.

- Imitrex injections 6mg - I just got these and they have worked fantastic. Usually aborting in 6-7 minutes.  The only side effect I see is they do make my jaw tighten up and do make me feel a bit uneasy.  It’s a small price to pay for a quick abort though.  The downside is my insurance would only cover 4 injections in a month and I've burned them all up in just a few days.  I'm now out, waiting for a prior authorization to go through in hopes of getting more.  I will likely just pay out of pocket for some if I don't get any help from insurance.

Now the downside to the injections is the last few days I've been getting more hits than I can abort with the injections.  Even if I would have had an injection this morning I couldn't use it since it would have been over 12mg in a 24hr period.  I had to ride one out sans meds (It really really sucked). 

Finally my doctor did prescribe me O2 after I mentioned it to him this last trip in.  He said he has another patient that seems to work well but he warned me that insurance was likely not going to pay for it.  The other thing that has me worried is he only prescribed 4-8 LPM and the script doesn't mention anything about a non re-breather mask like I've read on here.  I really want this to work because I feel I'm going to have too many hits in a 24hr period for the other meds to help in every instance. 

So like I said pretty good doc in that he nailed the cluster diagnosis quickly but he prescribes all the treatments in low doses from what I see on here.

Finally my questions.

1. Is this O2 script going to be a problem?  Can I go get a new regulator and correct mask on my own?  My hope is to keep an O2 tank at home and abort quickly and have a few extra Imitrex injections to carry around with me if I'm caught out away from home.

2. Is that dose of Verapamil essentially pissing in the wind?

3. How do I get family/friends/coworkers to stop offering Tylenol for my headache or telling me they know how I feel because they get Migraines. :)


Finally, huge thanks to whoever runs this site and all the people that contribute to it.  It's helped me more than you can imagine. 

Andrew

      

Welcome Andrew!

My answers are for here in the US, let us know where you are located..it may affect our answers.

1. I had no problem getting my O2 script from my neuro..1st thing he wrote. He also wrote a prednisone taper just in case I get desperate even though he knows I won't use it.

2. I am on Verapamil 240mg ER twice a day. I also have high BP so I can kill 2 birds so to speak.

No injections or nasal sprays here. I find if I hit the O2 at the first sign of even a shadow...it aborts them within 10 minutes for a high kip.

3. My dear sweet husband witnessed me going through a kip 9 one night..it broke his heart to the point of tears. Needless to say anyone that brings up migraines gets a quick lesson in what he saw me going through.

FYI..my last cycle started as all day hits and slowly morphed to nighttime hits every 2hrs. Not at all my usual cycle but then the beast likes to keep us on our toes.

Sorry you are here but glad you found us..just knowing there are others helps so much.

Hoping for pain free days,

Judy

Andrew,

       Sorry to hear there is another addition to the cluster headache family. But, we all know from experience how bad these things are.

As to your questions, here are my two cents from c. 25 years of CH (episodic & now chronic):

1. Full disclosure: I haven't used O2 in a long time b/c it didn't seem to work (although I think I'm going to give it another go). OK. I think if you can get the O2 bottles & find a regulator that will allow the flow rates suggested, then you should be OK.

2. I've taken verapamil for a long time, at 240 mg 2X/day.

3. Let them see you have one. That should cure them of the "Tylenol works for MY migraines" BS. I've never intentionally let anybody see me have one, but some family members & friends have. That usually puts an end to the questions and often results in a "I am SO sorry for thinking Tylenol would help. I had NO idea."
       Personally, I HATE to be seen having one, and have been known to be extremely rude to folks offering help/advice/etc. during that time so they would GO AWAY.

       Hope you get a satisfactory regimen that works well & keeps the Beast at bay. So sorry you're here, but as I discovered some years ago, if you have CH this is a GREAT PLACE!

1. If you doc is open to receiving medical material vis us, he can learn how to treat you more effecively. If not, find a Specialist, if at all possible.
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LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. 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.

4. 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.

5. 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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WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.
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2. Test him by giving following re. Verap.
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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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3. Neurology. 2007 Aug 28;69(9):821-6. 
Zolmitriptan nasal spray in the acute treatment of cluster headache: a double-blind study.

Rapoport AM, Mathew NT, Silberstein SD, Dodick D, Tepper SJ, Sheftell FD, Bigal ME.

Department of Neurology, David Geffen School of Medicine at UCLA, Los Angeles, CA, USA. alanrapoport@gmail.com

OBJECTIVE: To evaluate the efficacy and tolerability of zolmitriptan 5 mg and 10 mg nasal spray (ZNS) vs placebo in the acute treatment of cluster headache. Design/ METHODS: We conducted a multicenter, double-blind, randomized, three-period crossover study using ZNS 5 mg, ZNS 10 mg, and placebo. Headache intensity was rated by a 5-point scale: none, mild, moderate, severe, or very severe. The primary efficacy measure was headache response (pain reduced from moderate, severe, or very severe at baseline, to mild or none) at 30 minutes. Logistic regression was used to account for treatment period effect as well as for cluster headache subtype effect. RESULTS: A total of 52 adult patients treated 151 attacks. For the primary endpoint, both doses reached significance at 30 minutes (placebo = 30%, ZNS 5 mg = 50%, ZNS 10 mg = 63.3%). For headache relief, ZNS 10 mg separated from placebo at 10 minutes (24.5% vs 10%). Zolmitriptan 5 mg separated from placebo at 20 minutes (38.5% vs 20%). For pain-free status, ZNS 10 mg was superior to placebo at 15 minutes (22.0% vs 6%). Both doses had higher pain-free rates than placebo at 30 minutes (placebo = 20%, ZNS 5 mg = 38.5%, ZNS 10 mg = 46.9%). Side effects were mild and seen in 16% of those attacks treated with placebo, 25% of attacks treated with ZNS 5 mg, and 32.7% treated with ZNS 10 mg. Conclusions/Relevance: Zolmitriptan nasal spray, at doses of 5 and 10 mg, is effective and tolerable for the acute treatment of cluster headache.

Publication Types:
Research Support, Non-U.S. Gov't

PMID: 17724283 [PubMed]
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4. If $ becomes too big a barrier, good option:
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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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Only limitation is if you need more than 1-2 dose day.
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Finally, on well meaning advice: Sweet smile, "thanks", move on.
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Print the PDF file, below, one copy for you, one to your present doc.

And, see the O2 button, left.

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Short answer to your O2 question: yes, you can buy your own regulator and mask. If you choose to go down that path, let us know. You want a minimum of 15lpm, although 25lpm will be better. You want the kind of mask offered here, the Optimask. Also, you can couple your O2 with an energy drink. I find I can abort in under 3-5 minutes and I am chronic. I still use injections when the abort fails, or Migranal. I have both. You can battle the beast effectively, you just need the right weapons. blessings. lance

I have found that chugging a cold energy drink (Red Bull) as soon as possible after the onset and getting the O2 on @ 15L/min the best abortive there is.

Prevention is another issue all together.....Other than prednisone, which I won't take again, none of the traditional methods have worked for me in the past 14 years.

I hope you can enlighten your MD about the merits of using O2 properly.

kika wrote on Feb 7^th, 2014 at 9:49pm:

I have found that chugging a cold energy drink (Red Bull) as soon as possible after the onset and getting the O2 on @ 15L/min the best abortive there is. Prevention is another issue all together.....Other than prednisone, which I won't take again, none of the traditional methods have worked for me in the past 14 years. I hope you can enlighten your MD about the merits of using O2 properly.

Have you tried a higher flow rate for O2? For many people, jumping to 25lpm results in quicker aborts. I abort in about 12 minutes at 15lpm and under 5 at 25lpm, so I use less oxygen and get pain free quicker.

Hi and welcome. Sorry you needed to find us.

I don't take verapimil so can't help with that.
As for the oxygen, go to "oxygen info", yellow tab on the left of your screen. That will tell you all you need to know, and you can buy stuff from"CH.com store", also yellow tab.
The responses from friends and family are a whole different animal. There are 2 things you could try. 1) punch them.   2) don't call it a headache. Tell them you have trigeminal nerve compression - which is the absolute truth. They won't understand what that is, so just follow it up with "the only treatment is a vasoconstrictor"

Another tip- stockpile a few imitrex injections while you are out of cycle. We don't have insurance issues here in the UK, but it can be a slow process to get them, so I continue to collect them for several weeks after my cycle has ended. That way I am covered for the unexpected. According to folks here they still work well even when out of date.

The injections can be split too. Blue tab on your left called "imitrex tip". If you have the prefilled pen kind, google "cluster headache splitting injection". You can make it last longer this way, and the side effects you mentioned would likely be milder. Most people find 3 mg is enough - some even have success with 2mg.

Good luck
Maz.

Wow Andrew,your telling my story
Exactly
Imitrex pills from my gp
Paint dries faster
Verapamil 80 in the beginning,increased to 240 a day in the end.
Pred. Taper
Doc thinks oxygen only postpones the inevitable.
Go see a specialist.my gp is great but my neuro is more knowledgable