Hey all. I've been on these forums and scouring every last inch of this website for the past 2 weeks and have gained a LOT of knowledge and I want to thank each and every one of you.

Now for my brief story I spose. I currently, at the time of this typing, am sitting at my desk in a Wells Fargo Call Center taking phone calls and suffering with a monster of a HA.  Now I have NOT been diagnosed with CH; I haven't been diagnosed with anything for that matter.  The reason being is I JUST got insurance Jan 1, 2011 and I don't get to meet with my PCP until February 25, 2011.

I live in Salem, Oregon. So far my experience with my headaches have been as follows: It started January 29th; out of nowhere a stab in my left eye, quickly ramped up to the most excruciating pain I have ever felt within roughly 5-6 mins and would not stop stabbing me in the effin eye. And then as quickly as it had come on, roughly 20-30 mins later it was just gone. It was gone the whole day so I didn't think of it again too much. Then January 31st came, 1:00pm, in the middle of a phone call at work and this stab out of nowhere, that stopped me mid sentence with my customer cause the pain was so abrupt and my left eye started tearing up but I wasn't crying (you know?) and it raged and raged and I read up about the Kip scale so I would rate it that day, Kip 9. I left work immediately, passed my phone call on to a coworker, and went to urgent care because I didn't have my PCP established yet. Got to ER, waited for only about 45 mins( headache still going, left eye still dying) and finally got seen. Explained to the doc the symptoms (which matched CH symptoms but I didn't know about CH at the time of visit), been dealing with it for a few days. The urgent care doc gave me a shot of Toradol (sorry she didn't tell me the dose) telling me it should stop the headache and sent me on my way.

The shot did nothing. At all. That night I started looking up my symptoms, learned about cluster headaches and then found this website! :)

Now I know I haven't been diagnosed, but I get to see my PCP next friday and thus far I have been keeping a pain journal.
I am currently at:
- 20 days recorded.
- 110 headaches (avg 5.5/day)
- Pain avg (kip 7)
Most of the attacks occur like clockwork. 8:00am-9:00am every morning. 10:00am-11:00am 12:00pm; 2:00pm; 4:00pm; 6:00pm. And then recently (within the last 6 days or so) HAs that wake me from deep sleep between 1:00am-4:00am
Treatments tried:
- Excedrin, Advil, Ibuprofen, Bayer but no relief. At all.

Alternative treatments tried:
- Red Bull, and 1000+ mg Taurine drinks at time of onset, but no relief.

These headaches seriously interfere with my work and social life. I have a 3 y/o daughter and my fiance both living with me and it's hard trying to keep my calm during these attacks and at the same time try to not let my daughter see me during a kip7, 8 or 9. She can't see her strong protecting daddy reduced to a blubbering pile by something invisible.  Plus my job is about to fire me because of the days I've had to miss or leave early because these attacks get so bad I literally can not sit at the computer. I have to leave early, or keep signing off my phone to go hide and cry in the men's bathroom at work. I can't get any special leave because I can't apply for it until I have a qualifying medical condition, and since I haven't seen my PCP yet (and can't till friday) all I can do is just keep pressing on.

I have read alot about CH, plus other complex headaches that aren't migraine and tension and my symptoms only fit CH. Save for Chronic Paroxsymal Hemicrania except that i only have around 5-6 headaches a day and they last easily 30mins upwards through 1.5 hrs.

So that's me. Apologies for the length but I do appreciate you lending me your virtual ears.

Forgot some questions.

Other than the headache journal, is there anything else I can do to prep for my PCP visit?

Is there any way I can be seen sooner than having to wait another week?

Thanks again.

Please tell us where you live. Follow the next line to a message which will guide 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
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Headache is a far more complex issue than most folks assume. There are dozens of DX with overlapping symptoms and treatment is RARELY something our PCP can handle: the education/experience even for most neurologists is remarkably limited. So you have seen this bit....

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. 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.

5. 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.

6. 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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And, since you have been exploring the site, you know our recurring suggestion that you learn much so that you can discuss options with whomever you see and you have seen the basic materials which I regularly post. Just encouraging you to read/learn...

And stay away from my Wells-Fargo stuff. Having enough strain trying to understand the new web site, et al. !! <bg>
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If you are convinced you have CH, stay away from all pain meds. They don't work and, with too much use, can increase the attacks.

If you need motivation about seeing a specialist, see the message, "Cluster LIKE headache" in "Important Messages" in the "Medications, therapies" section.

I forgot to update the profile. Fixed now. Thanks for the links Bob. :)

I'm gonna keep trying to find a specialist. I've tried 2 Neurologists so far (one at OHSU) and (one here in Salem) and both were quite rude and told me I needed a referral from my PCP. So I'm gonna wait till Friday to see what happens. I'm just worried that my PCP will be biased to his own training, WON'T want to listen to any additional info, and I won't get any treatment. I don't WANT to have this, don't get me wrong, nor am I looking for drugs. But I do want a way to control this pain. This month has been a god awful nightmare thus far and now I'm going to go hide in the bathroom.

Don't worry Bob, your Wells Fargo account won't be messed with.

Ouch, the early stages of diagnosis and treatment just suck. Start out your visit by assuring your PCP you do NOT want pain killers. Other then rendering you completely unconcious, pain killers have no place in the treatment of CH. They will NOT help at all with the pain, and the danger of addiction and rebound headaches is too great.

Your best bet for an effective diagnosis and treatment regimen is a headache specialist neuro. That might take a little while, so until then:

Talk to your doc about a short steroid taper. 80 mg down to zero over a 10-14 day period. It'll often provide complete relief for a short period of time. You shouldn't take it long term as it can really play hell with internal organs, joints etc. But for a short term break it can't be beat.

While you're on the steroid taper, see if he'll start you on Verapamil, a very commonly used prevent. Takes 10-14 days to become effective, and it'll take a while to figure out the effective dosing. Some end up going as high as 960 mg a day to get relief.

See if you can talk your doc into prescribing imitrex injectables, then read the following link. It'll show you how to get 3 aborts from every shot. When you see how pricey they are, you'll see why that's important!

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

The above program will hopefully buy you a few weeks to get stabilized so you don't lose your job while you await your neuro visit.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Read this link and print out the supporting doc's. Take it to your GP and really push hard for an 02 script. If it turns out you do not have CH, 02 won't hurt anything. If you DO have CH, you'll think the oxygen is freaking magic. I am a 33 year sufferer, my abort times with 02 run about 6-8 minutes.

This is a start, glad you found us, hope we can help you out.

Joe

Hey NH in Salem,

Welcome aboard.  You've already received some sound advice from Bob and Joe.  Getting a proper diagnosis can be a lengthy and onerous process as Joe pointed out, but it's essential if you're going to have medical insurance coverage. 

Some PCPs/GPs will punt on making a diagnosis and will instead, arrange for a consult with a neurologist.  If this happens, make sure the consult is with a neurologist specializing in headaches.

Take a look at the following link.  It provides the EFNS guidelines on the treatment of cluster headache and other trigeminal-autonomic cephalalgias.  It was prepared by some of the brightest minds in the field of neurology with many years experience treating patients with cluster headache.

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE.

We suffer from an orphan disorder that is neither well known nor understood.  Too many PCPs and general neurologists are unfamiliar with this disorder and how to treat it properly.  Print out a copy of the above link and take with you when you finally get an appointment for your headaches.

Most of us want to be alone when the CH hit.  That's normal.  Having said that, the people who've learned how to make the most out of CH and who have found they can enjoy a good quality of life they didn't think possible at first, make sure those who are closest understand how CH affects you. 

Children are special.  They're acutely aware of and very sensitive to things that affect their parents.  It's important your daughter knows about your CH and understand what CH does to you.  Children can also be one of our strongest supporters and will frequently know we're about to have a CH before we do.

Many of us have found that oxygen therapy is effective in aborting our CH in a matter of minutes if we start early, the flow rate is high enough and we have the right kind of oxygen mask.

Once your daughter understands how effective oxygen therapy can be to make your CH pain go away, don't be surprised to hear her say something like "Are you having a CH?" or "Do you need your oxygen?"

I've already sent you a PM with some suggestions on things you can do until you get your appointment.

Take care and hang in there.  You've come to the right place.

V/R, Batch

ref. msg #3: If you are concerned that the PCP won't refer and/or thinks he is able to diagnose/treat you, you might print out two items to drop on him should he refuse a referral. The goal being: confront him, nicely, with medical information which asks him to evaluate his knowledge/skills--without getting into a cat fight.

PDF file, below. These are standard treatments which any doc should be using.

Go to: the section, "medications & therapies...", under "important messages", print out "Cluster-LIKE headaches". If he doesn't appreciate this message--move on.

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Please do take all the advice you've been given, and especially any material you can print and bring with you. Most docs will be open to your asking for interventions for which you can demonstrate some evidence they will work (O2 high flow, imitrex which is well known, prednisone tapers also well known) and since they tend to have overlapping uses, not much risk for the doc. But, you must self advocate. Be polite but firm. Pose your suggestion as a question...what about taking/prescribing...? And let us know how you make out. We've been (and are) where you are. It's the worst time but relief is around the corner. The beast tames somewhat when confronted with good abortives.

And the energy drink thingie only works for me by itself very, very early on in the hit. Usually works best when coupled with high flow O2. Blessings. lance

All the previous posts are excellent and I can only add that I have also taken whimsey1's (lance's) approach with my doc, that is I tell him of research I've read on this message board and other places and ask for his input on advantages/disadvantages of utilizing this or that treatment over another.  In other words I try to make it a "brainstorming" session so as to include him, but I really tend to direct the conversation and therefore the treatment options.

Hey all. Stuck at work currently with a harpoon in my retina. *sigh* Since I'm being watched like a hawk, I just have to grin and bear it rather than being able to disconnect from this infernal phone and go hide for about 30 mins. So I figured I'd write to you all who can relate to my plight.

Thank you all for the wonderful advice included above in this thread. I'm following it all and going to bring as much information about CH to my PCP and do as Glassman has said, a "brainstorming" session with subtle leading for treatment.

OW! I just felt that needed to be typed since I can't scream it. Sorry for the vent; thanks for listening.

Hits at work suck. :'(

Joe

i live in mcminnville-close, im 43 and started clusters at 20yrs. 5to6yrs ago they went chronic. i have experience that may help. i get them left side or right side and occasionally migrains too with clusters coming and going thru the migrains. ice packs around ears, temple,and forehead all i can afford that help the intense burn but dont block pressure. we should keep in touch. brother duck

yes you can take safe leave from work, get fmla papers and your doctor will fill them out, i had to and work must submit to periodic absences, its a dibilitating disorder!