I'll try not to make this a 3 page post haha. Just figured I'd post and say hi and share some of my back round.
My name is Steve and I'm 42. I have suffered from Migraines since I was a teenager. They were passed down to me from my mother . I have TMJ real bad in my left side, I also get CH's in that same side. Dealing with the first two my whole life has been rough to say the least. Around 5-6 years ago I was working midnights and woke up with major pain in the left side of my head, jaw, eye, and part of my face. My upper left teeth even hurt. My first thought was I was clinching in my sleep and it triggered my TMJ and migraine. After dealing with it happening over the next few days and pain getting worse I was pointed in so many different directions. I was told it was my wisdom tooth, I needed a root canal, it was my migraines, TMJ, problem with my vision, and the list goes on. After being bounced to a bunch of doctors and a few hospital visits the 3rd neurologist said it looked to be trigeminal neuralgia. Put me on a bunch of different meds (to many to remember) and sent me on my way. Pains cleared up and all looked good. Then around 7 months later it came back. A few trips to different neurologists, hospital visits, different meds, and me telling them they are missing something, the pain went away after 2 months or so. I went on this roller coaster ride for years. After some time I was able to get into Columbia University in NY. Ride is around and hour and a half away. He looked at all my films and said the problem is CH's. He jump my dose of Indomethacin from 50mg as needed to 50mg 3 times a day. I was not truly able to tell if this worked because I was at the end om my 2-3 month cycle. I was good for a year and two months till it came back a month ago. I had my family doctor write me out a new script for it. I feel as it wasn't helping but he didn't feel safe changing out my meds. He pointed out that I should be following up with a neurologist. Stated he would feel more comfortable with them changing out my meds. I do kind of understand. Problem is driving that far to see a neurologist isn't easy at all. Even if I'm not driving just being in a car that long is rough. I'm sure many of you understand that . This is where I can use a little help. Calling out of work due to pain puts me at a real risk of loosing my job. I've been trying to find a med that I can take to try and take in case of a real bad break out pain while out or at work. I can't take anything in the Imitrex family I have a real bad reaction to it. Kind of like having having a stroke or heart attack. I tried lower doses in the past for my migraines and had the same reaction. I'm willing to try the oxygen route but that doesn't work out if I'm at work or something. I have been reading online and looking at meds online but there is so much stuff it makes me dizzy just looking at it all. I also have been to see a lot of neurologists but have not found one that I'm comfortable with. I have seen some real bad ones. One even had my wife in tears because he was so rude to put in nicely. Not sure if I'm posting in the right place for help. If I'm not it would be great if somebody could point me in the right direction. Any help out all would be great. T.I.A.
BTW thanks for such a great site. My wife thinks it's wonderful that there is a place that we I can talk and read about people dealing with the same problems. It;s not great that people have to deal with it but she thinks of it more as a place for support so we know that we are not alone.
Thanks for listening, Steve

Thanks for the reply and the welcome. I have clocked in a lot of hours reading the past 3 days. I went back to work yesterday only to be up all night in pain. Talked work into giving me two vacation days so I can try and get things under control.
So of the posts here really do touch close to home. I even had to walk away from computer a few time to clear my head. Reading posts from members of how the feel and what they deal with brings back a lot of memories. 
The fear of going to sleep, the head in the pillow, curled up in a ball, begging wife to please make it stop, the why me, ect. I have nothing but sadness and respect for everybody along with their families that have to deal with this. I just hope one day we could all feel better. I truly hope that one day I will be able to help somebody out with all of my history dealing with pain.

Given your medical history it would be best, if possible, to locate a headache specialist. It's all too common for folks to wander around for years, one doc to another, trying to find knowledge/skill.
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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.
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Need to review the Imitrex reaction with a good doc. If you have heart disease, then it's out. There is a benign reaction pattern of chest tightness which has been recognized--but doc needs to make the judgment call on which issue is the source of your reaction.
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Number of us have had excellent results using this med. It aborts a Cluster attack in 10-20 minutes; cost per dose is much less than Imitrex; advantage of a pill.

But first, need a specialist to confirm the Cluster Dx before you start trying this-and-that treatment.
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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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Since this abstract was first posted Zyprexa has appeared in some lists of recommended meds for CH. [BJ]
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See the PDF file, below, for the most commonly used meds for Cluster. It's both for your information and as a discussion tool with your doc.

Thank you for all the replies. I'm late reading today due to waking up in major pain . Wasn't able to get anything I needed to do done today. I'll try to reply to everything sorry if I missed anything. I did read it all though.
As of now I have been looking into the O2 option. Along with some herbal things I can take almost all year long. I asked my personal doctor about writing me a script for O2. Said he was never wrote one before that he wants a neurologist to do that. I'm trying to find another neurologist that handles cases like this that is a little more local and understanding. I'm kind of upset with the last one for not offering or talking about something to abort pain when I told him about the Imatrix problem. My wife even called to tell him I would take the risk of Imatrix when I was curled up on the floor. All he said was no to the Imatrix but didn't offer any other suggestions.
I have tried  prednisone in the past with no luck.
My heart looks to be ok. I have a lot of testing done less then two years ago before I went in for major back surgery. I was reading up on Migranal and think it might be an option. I was hoping to find something that is injection or pill based. At work I deal with bleach products all day long. At times I'm stuffed up or nose is burning . Back to the O2. I think it's a great option for home. At times I work 12 hour days along with weekends. I did have a small episode at work last week. I was lucky it only last 30 minutes or so. I really worry about it happening again and lasting longer with no option with me.
Sorry if I missed anything. I will check out all the links. I just can't look at this screen anymore. Really bothering my eye.
Thanks again to everybody!

There has been so many meds I forgot most names. As I see them I remember. I have to have the drug store print me out my history. Also found out on Friday that my D level is low. Started taking D that I still have here. I have to call Monday and find out how low my levels are. The assistant I talked to only said they were low. Didn't know how low. Hopefully jumping my level up will help some. Thanks all!
Thanks Batch for the info you sent .

DHE45 is injectable, and in the dihidroergotamine family. Not sure if it's still around, but at least one board member used (uses?) it to abort hits. Blessings. lance

I use DHE 45 IM injectables. Aborts well and gives me up to 24 hrs pain free time. Imitrex doesn't work for me. I've tried the Migranal (which is DHE) and found it too slow to abort but was helpful to prevent hits and get some sleep.

The Migranal was a little hard on my heart, not bad, but not the injections. The inhaler dose is 2ml and the injection is 1ml. You may have to order the DHE injection.

I get it from a local Hospital Pharmacy and must order a day in advance. Be sure to read up on the Drug, it's dangerous to heart patients. Took me 3 years to get my Neuro to Rx it.

Try Batch's method and you may not need it....

Don

Well I was able to find a doctor that will fit me in tomorrow afternoon. Found him on headaches.org. Person I talked to sounded really nice.
Any tips on being able to sleep through the night? I'm at the stage of pain waiting me up everything 30-45 minutes. The stage I'm at right now is that is the worst of my pain. The pain during the day I can kind of handle. It's the pain that wakes me up that is killing me. I know them pains will soon be during the day too .

Well had what I felt was a really good visit with the new doctor. He was a little surprised that I came from 50 minutes away. Told me to stop other meds that they will not work. Gave me my migranal, predisone, lithium (not happy about that one), and even did a nerve block in the office. Have to go back in 3 weeks for a follow up. Told me to call if meds don't help break the cycle. I also told him he was my last resort or try at this. He didn't agree with the was the treated my problems in the past. Also pointed out that they should have done more with my migraines as a teen. Feels that lack of treatment bought me to where I am now.  He told me I was Chronic even though I feel as I' more Episodic.
BTW there girl working the front desk has heard of this site . I told her I found them with help from all of you.

Good post.

I didn't get much of a reply from doc when I asked about oxygen. If I can get tank cheap enough I'll pay for it myself.
I didn't see anything listed on Harbor Freights site. Do they carry them in the stores? I have one not far from me.

M tanks in medical are the same size as H tanks at the welding suppy store they are about 100lbs. K tanks are huge and weigh about 200 lbs. Your local welding supply store will have everything you need. Industrial 02 comes in about any tank size from 20lbs to 2000lbs liquid 02 tanks.
Just rent the cylinder from the supply store. They require periodic maintenance that you will not have to worry about. When it gets empty you just take it in for another one.Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

Great minds BB!!!

Joe