The more I read about these CH's the more I wonder if this is what's going on with me & not the originally diagnosed chronic migraines.
In 2007, I was 25, during my last pregnancy I just out of the blue started having these horrible headaches and from the stress of the pain was thrown into contractions. So they admitted me to the hospital, had a neurologist come to see me & he told me I was having a severe migraine attack so put me on iv demerol, reglan & a steriod (I think) yeah the demerol was heaven spelled RELIEF!!!!! Anyways this lasted the whole pregnancy, which they suspected was the reason for them & that once the baby was born they would subside...wrong! Being that I was pregnant they couldn't give me the meds for migraines so I was given Lortab. I basically had to take this the whole pregnancy, I worried the whole time what it could do to the baby. He was however just fine. Well the HA's cont'd & I swear they tried everything & nothing worked it seemed. I wound up in rehab from addiction to pain meds & still fight this addiction today because of the HA's. When I see ya'll saying you'd do anything to make it stop I know exactly what you mean. I currently do not have medical insurance so its hard to get in with a dr that could perhaps better treat me. A few times during ER visits I've had it suggested to me that these could be CH's. Never really gave it much thought because I had never heard of them. Well found this site & have begun reading & can't believe the resemblances. My symptoms include a droopy eyelid, nose kinda stuffy & runs a bit out of the right side which is the side that I have the HA's on, some nausea, sometimes light sensitivity, most of the time I can't STAND noises & having 3 boys that's nearly impossible, my eyes do run a bit sometimes but that can also include them both, I can't sleep when I have them but can sometimes just lay in the dark & cold but also just rock back & forth while sitting on the couch, anytime I've been to the dr or er with one my blood pressure is high, I do sweat, I feel like my eyeball has a icepick sticking through it over & over. I haven't ever kept a diary of when I have them & how bad they are which is bad on my part but I do know that they are crippling most of the time & sometimes I can kinda deal with it to an extent, these occur weekly, mostly daily & sometimes more than once a day. I feel like they just never leave to be honest. When I have one thought I just feel like I can't take it & don't care what is going on I just want someone to give me relief!!! I have taken excedrin or bc powder around the clock to the point where it has really messed up my stomach. I've just run out of patience with these things, so tired of them. I miss out on so much with my family because I'm unable to do things with them. Any advice from ya'll would be most welcome!!!! :'(

Forgot to mention that I also have had that sudden relief too. I can also tell when I'm gonna have one too & don't know how to quite explain it I just feel it. That make sense?

Hi!

I can tell you that most of us around here are going to urge you to seek out a headache specialist to get a proper diagnosis.  Keep a record of your headaches.  When do you get them? How long do they last?  How often? 

I can also tell you that I was misdiagnosed for over 20 years.  Because we are women, many doctors assume that we have migraine and not CH. ( That is, IF they have even heard of CH )

Until you do get to a doctor, you could try drinking an energy drink, such as Red Bull, when you have that "feeling" you are going to get a headache.  Drink it as fast as you can and see if it helps.  I am still amazed that it works for me as often as it does!

Jeannie

Check with your local hospital for free/low cost clinics....

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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Cluster Headache Help and Support › Medications,  Treatments,  Therapies › MEDICATION $ ASSISTANCE: 12 sources=UPDATE

Hi Amiou,

That's a tough and familiar spot you're in with no insurance.  :'(

Until you can get a headache specialist appointment, the D3 based regimen for CH is something worth looking into I think. It has caused a stir here for sure due to the number of CH'ers it has helped. Plus it appears to be just plain good for you regardless.

Here's a link to info about it: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

I agree you need a proper diagnosis.
That said, if you find yourself with nowhere else to go... I would suggest you read up on oxygen and how to properly administer it for CH. Next time you find yourself in the ER you can insist on trying it (print out info to take with you). In desperation, I know the EMTs at my local fire house would be more helpful to me than going to the ER and trying to explain O2 therapy for CH to them.
This I offer as a hopeful alternative to the opiates that you have already learned the hard way are not a good answer.