Hello to the group,

I wish I could say it was nice to see you, but if you are in this group you are dealing with the hell that I am as well.

I feel like I'm going to lose my job because I've had to call in so much lately and I've tried to explain to my boss what is happening, but no one who isn't a sufferer understands what this is. My doctor gave me a Rx for Imitrex 100mg in the pill form but says I can't get an injection unless I see a neurologist and they can't see me until 9/21. I feel like that is a life time away and my clusters have been happening for  over 3 weeks now, which is the longest they've ever happened. Each occurrence usually lasts up to an hour, but last night it was 4 hours. Honestly, I don't know how much more I can take and I don't want to overdose on pain meds, but that seems to be the only thing that will make the agony stop.

Does anyone know how to see a neurologist sooner or what can be done if it's only getting worse? I'm starting to worry that this might be something worse.

Thank you!
Vanessa

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
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If you are in an area where you can find a headache specialist this would be a much better bet than seeing a neurologis. (They seldom have training/education with headache. Rather than wait for the appt, call his office and ask if he has training/expeience with headaches.)
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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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or On-line screen to find a physician.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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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IF you have Cluster (and hat hasn't been established yet) the Imitrex pill is useless. The injection form is the most effective with CLUSTER.

If he won't budge, ask him for a sample of the following. Print this article and give it to him. With 1 to 3 uses, you'll know whether it works for you.
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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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Print out the PDF article below. Give you both your present doc and anyone else she consult.

vkarno wrote on Sep 3^rd, 2015 at 7:21pm:

That combo will kill you.  The headache won't.

                      Potter

I have no idea if I can have O2 prescribed, but tomorrow I will call my doctor and see if that's possible. How do you make yourself hyperventilate?

In regard to the combination I take, that's what my Dr (the one who said "that's a migraine" and argued with me when I told him I've had a migraine and it's definitely not a migraine, anyway, I digress...the doctor said that that's safe for me. Although I am a woman, I'm taller than most men, so maybe it's different? I don't know.

A couple questions:
1 - this is the first I've heard from 2 different people, in all the reading that I've done about this problem, about Red Bull and Monster helping. What's that about?

2 - How do you make yourself hyperventilate?

Thank you so much, everyone! This is the first time in a long time that I've felt supported.

Hi vkarno
Firstly stop risking your health by taking a combo of pain meds. Pain meds do not work for clusters - not even morphine. The relief you have had after 45 minutes is the imitrex kicking in. If you can get the injections they are far better and only take 5 - 10 minutes.  I dont believe that you can't get the injections till you see a neuro. Every one else does so your doctor must have some othe agenda - his budget maybe - not sure how it all works over there.

CH is caused by a dilated blood vessel pressing on the trigeminal nerve. Redbull , monster etc. contain caffiene and taurine, and this combi can cause the bloodvessels to constrict in some people, which is exactly what the imitrex and high flow oxygen does. It needs to be in a sudden hit so gulp it down really fast and it has to be right at the onset of pain. Don't wait for the pain to ramp up or it will be too late. It doesn't work for everyone, but does for many so it's worth a try.

Hyperventilating on flow oxygen works well but you have to have a minimum of 15 liters per minute (25 is better) with a non-rebreather mask. If you get either of those wrong it won't work.  I can only get 15 liters here in England, and it does not make me hyperventilate - but it still works in 10 - 15 minutes. You could try taking an imitrex pill before going to bed. I know it says you shouldn't, but it will often get you through most of the night.

Episodes can last for weeks or months, or just a few days. There is no way to tell. Mine usually last about 6 weeks but the current episode has been going on to some degree since february.  I will say, your husband did not "have one once too". Nobody has one once.

Lastly, don't use the word "headache". It's not a headache in any way shape or form and it's a rediculous name. Tell people you have trigeminal autonomic cephalgia. Not too many people will say "I had one of those once too".

One last thing, I heard there is also a nasal spray that is effective for quick relief. Has anyone tried that solution successfully?

Regarding how to hyperventilate with O2, I use the technique described by Batch in this thread with great success:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

I understand the skepticism about asking the doc for a trial of the med I suggested.

HOWEVER, you have little to lose in trying and the article is from a recognized medical joural authored by a well recognized M.D. in his field of medicine.

The beauty of the Olanzapine is, even if you have to pay for them, the cost per dose is small. (And he may have samples to give you for free.)

Hi Vanessa and welcome,
For now until you get the Imitrex injectors. If your out and about, at the first inkling of a CH swallow the Imitrex tablet down with a Pepsi Cola, this can abort an attack within 10mins, and if at home the same applies, but replace the Pepsi with a really strong hot cup of coffee to knock the beast on the head.

Cheers, Hoppy

Have you tried the D3 regimen (check with Batch if you have a problem finding it here).. It's worked wonders for a LOT of us here.. especially chronics (I've been chronic since 97 and am now almost two years PF).

O2 is the BEST abort around (if done properly).  Check the O2 info on the left.

Melatonin (OTC in the Vitamin section of most pharmacies or Wal-Mart) is helpful to a lot of us for stopping the nite hits.. I take 20 mg before bedtime. And it won't hurt you.. I've been on it for YEARS.. And in that time have had very FEW night hits..

But narcotics don't work on CH and can actually cause REBOUNDS which makes it all the worse.

But when you DO see the neuro - go prepared .. learn all you can (and the info is on this site) about CH so you can be your own advocate. Some neuro's are still clueless about CH and you'll probably have to educate the one you go to. Don't be afraid to ASK questions and if he can't answer you FIND ANOTHER NEURO..

One of the main questions to ask is "How many cluster patients have/are you treating?"

But read read read here.. There is a wealth of information on CH (better than most medical schools have) and WE do understand what you're going thru..

Keep us up to date.. We DO CARE..