Hi Gary and welcome

First off, medical marijuana will not help with CH as it is a powerful vaso-dilator, which is the complete opposite of one of our best abortives, oxygen, which works as a vaso-constrictor. Certainly whilst having a CH, I'd avoid using marijuana as it will not help.

You didn't mention taking anything to act as a preventive. What works well are preventives like verapamil, lithium, topomax, etc, which can stop a large percentage of CHs from happening at all. Frequently at the start of a cycle people will use a prednisione taper whilst the main preventive builds up over 10 days or so to an effective dose.

Another route people are using is a combination of high doses of vitamin D3 along with some other supplements. There is a forum topic all about this.

Similarly you didn't mention anything to abort a CH. What works amazingly well is high flow rate oxygen via a non-rebreather mask (see oxygen link on the left). This allows me to abort a CH in around 6 minutes. Another common abortive is imitrex, with the injections working in a few minutes.

Energy drinks, like Red Bull, with caffeine and taurine, can help reduce the duration and intensity of a hit.

Tell us more about what you use to prevent or abort your CHs and we'll be able to give better, more targetted advice.

My impression is that your docs don't know headaches.

If possible, find a headache specialist. This is a far more complex area of medicine and, with your complex medical history, you need good skills treating you.
----
LOCATING HEADACHE SPECIALIST

1. Search the OUCH site (button on left) for a list of recommended M.D.s.

2. 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.

3.  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.

4. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or ; On-line screen to find a physician.

5. 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.

6. 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.
====
You report a kip 10 for a week: A series of attacks at this level OR a continuous headache? If the latter, you're not dealing with Cluster AND you need serious attention from a specialist.

SERIOUSLY encourage you to not start jumping from this treatment to that in hopes of gaining control. Situation sounds too complex/serious for delay.

Finally,
Please tell us where you live. Follow the next line to a message which explains why knowing your location and your medical history will help us to help you.

Cluster Headache Help and Support › Getting to Know Ya › Newbies, Help us...help you
You can add your location by editing your profile. CP Member --> profile
BUT, Please!, don't post your messages at this location. They won't get the attention you want: use the appropriate sections which follow.

WOW!!! Lot of info. But you got some of it wrong. My mistake for posting when I was so tired.

First, I live in central Virginia, about 30 minutes from UVA hospital.

Second, (I'm bouncing around questions in hopes of giving yall the best info I can) I haven't been below a kip scale of 9 for over a week. It's the same thing EVERY day. I wake up, puke my guts out from the pain (which I've just done) and grit my teeth until I can lay back down for a while. Last night I got only about 4hrs sleep and that's more than I've gotten in a while. So at least I'm thankful for that. In answer to the question of whether it's been one continuous pain or a recurrence of pains, to be honest. I don't know which it is. The pain never seems to stop! And this has been going on since last tuesday (10days ago) and to be honest, I'm at the end of my rope it seems.

Third, I'm bipolar (taking cymbalta 60mg and 15mg of Abilify, which I've heard should not be mixed) I'm also a chronic insomniac and have to take seroquel 25mg to even have a chance to fall asleep. However, usually I don't. I sleep VERY little now a days. It just hurts too much to stay asleep and once I'm awake, I'm up for the day.

Lets see, Fourth, I'll admit that I like to indulge myself into marijuana at times, but as for opioids, no, I don't like them. I like to maintain a bit of self control and on them, I can't control (or remember) anything. So even though I've been getting a lot of them, opioids,  are FAR from my drug of choice.

Fifth, Thank you Bob Johnson for all the links and info. I will study each one (and take notes) after I'm a bit more awake.

Wimsey1, like I said, I'm a rapid cycle manic depressive (bipolar) so the thought of suicide is always lurking in the back of my mind at hard times. I'm on my meds for this and as long as I take them I'm in no danger of harming myself. I love what little bit of family I have too much to put them through that despair. So at the very least, that's one thing you don't have to deal with.

I also didn't mean to come off sounding like I wasn't willing to try lithium or topomax. I've been there, done that but it was at a dosage concurrent with bipolar. Not CH. So I'm willing to try anything. Even if that means trying something I've already been on.

Sorry the white background of this page is too bright right now. Will break out the yellow pages and go from there for a while. I'll be back though and I welcome and support any help that you all may be able to give me. Wish me luck!

Also, the neurologist suggested to me last night at the ER (and I hope I'm not breaking any rules by posting this) is Christopher Scherer out of Charlottesville, VA. I will give him a call shortly.

Are you seeing a psychiatrist for the bipolar? If yes, ask him if he would give you a sample of this med. You will know with 1-3 uses whether it helps.

Don't limit yourself to the local market for a headache specialist Too important that you see somone with the skill/experience to help you (back to my first post on how to locate one0>
===
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

--------------------------------------------------------------------------------


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.
=====
Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]

In enough pain and despair that I've become suicidal as hell. I'm going back to the ER and I'm not leaving this time without some improvements. I just can't live like this because it's NOT living, it's suffering. The ER will probably put a 72hr hold on me so I may not be back on for a few days. Please offer up any suggestions you feel that may be appropriate. I'll check this post when I get out. Wish me luck everyone.

Print this out. It lists the major meds for Cluster, dosing, and their purpose. As things change over time, you will find this a useful bit of info.

PDF file, below.

Hey Gary,

Really really sorry to hear about what you're going  through.

The high liter flow 100% O2  that Lance recommended is wildly popular here because it works well for the vast majority of us. I hope you can give it a try, along with the Zyprexa Bob mentioned.

Don't give up hope - those of us that really research this thing here (something that I do realize has to be very difficult for you at the moment)  tend to find some significant relief.

Gary, you have so much going on at the same time it makes my head spin and I feel deeply for what you are going through.  In fact it brought a tear to my eye.   

None of us here are doctors but Bob Johnson in his above posts is as  close to good advice as you can get without an M.D, after their name.  I hope you will re-read what he has to say.

If you've been to the ER 4 times this week...I have to ask.  Was it at  all helpful?  most of us who've been there-done that, would say no.. a hundred times over.  Most ER rooms/doctors  have no clue what a CH is, have no idea of how to treat it, most ER's make you wait for several hours which of course by that time the attack has passed..a lot of the personnel think we are drug seekers, or...if someone there actually knows what a CH is, by the time you are seen it's over. You can go to
the nearest fire station quicker and use their oxygen for free.  While there,  be sure to educate them on CH.