Hello all...I had my first attack lastnight of this season so I decided to come back and share. When I joined this board in June, I had just had the last bad attack of that cycle.

I've been jokingly saying Oct through Dec are gonna be hell. But deep down I was hoping I was wrong and this isn't what I fear it is. I was hoping I would just go this fall without any pain. But on Thursday I got 3 sharp shooting twinges over my eye (my cluster eye) and I was immediately reminded of how I felt in June. Then sure enough...right on cue yesterday at 430 I start getting the pressure behind my eye. I chug a red bull and I'm fine til 1030. Then it was all I could do not to scream and cry out loud as I'm riding in a car for 45 mins. It's back....so now I'm back.... Not looking forward to this 😢

KayleyKat

I read all of you messages from the last time you were posting here (but not the posts from other folks who repliedd to you; they don't show up.)

Yo never told us about who was treating you or how (meds,etc.).

It would be helpful if you would be specific about what your needs are; what are you seeking here. Are you seeing a doctor for treatment?

You did mention a pain clinic but no other information. If you are still considering it--don't! They have a very poor tracking record here re. Cluster treatmnt. You're bes bet is a neurologist who has experience/training in headache. Ask before using a neuro; many are very poor trained in complex headache issues.

First choice would be:

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.

Two resources to explore: 1. Call the social service/social worker at your hospital and outline your situation. They often have leads/contacts to low cost/free clinics.

I'll bet that you are eligible for free care uner the new Obama health care plan. Call your local social service agency for info.

If you can find $ support, avoid neurologists re. Cluster. As a group, they have meager training, surprisingly, and the complaints we get here about their lack of skill are endless.

Before you start any kind of treatment--self-directed or not--a good work-up is essential. There are many disorders which mimic Cluster but which are not headache disosrders. To many people have wandered around for years for years, failing treatments, because they don't have Cluster.

Print out and store for future use

1.   
Link to: cluster-LIKE headache:

IN: "Medications, Treatments, Therapies --> "Important Topics" --> "Cluster-LIKE headache"

2. Print from the box below.

3. When you get to an M.D., print this article and ask him to consider prescribing. It's the least expensive med to abort Clusters going. It became the only med I used after discovering it and, for a few, it prevents as well as aborts attacks.
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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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HeadEyePain wrote on Oct 26^th, 2015 at 10:24am:



        Would a flat bladed screwdriver be ok?

             Potter

HeadEyePain wrote, To free up my nose block I had to insert a Philips screwdriver up my nose till the blockage and manually clear the block.
This is not recommended but it helped remove the pain within a few minutes instead of waiting for hours.

Now as much as ever this shows the need for a true and correct diagnosis of just what sort of headache is happening.

Some are easily fixed and there's no need for suffering, while others can be dangerous.

This is why a dinkum headache specialist can be your new best friend.

I sympathize about the money situation, but I think you can get some D3 at your local supermarket for close to the price a pack of Redbull would cost you. Trust me, those energy drinks can lead to nasty rebound headaches that are worse and longer than a normal cluster. I've found that I actually don't even need to stick to the total regimen, just popping a few 5000 iu D3 from time to time (twice a week) when I'm off cycle and daily when I start to get some shadows usually does the trick. Probably worth a try for your case. Best of luck.