Hello everyone. I am new to this group as well as new to the world of Cluster Headaches. For the week, I have suffered from the worst pain in my life every morning at the same time when I go to bed. I work midnights so I am in bed around 7am and by 7:30 I am wanting to scrape the left side of my face off.

The pain only ripped through once, lasted about 15 minutes, and left as fast as it came. Leaving me freaked out. I use to suffer from severe migraines and I could control them, but with this new pain there was no stopping it.

I was scheduled to go to the doctor on Tuesday thinking this was sinus infection related (something I have never had in my 39 years of life). I worked Monday night, fell asleep around 5am and by 6am this pain came back. I knew it was approaching because I would feel little pain through my lip, then my eye, and then my cheekbone. Next thing I knew the whole left side of my face was as if thousands of barbs were trying to rip through my face..while on fire.

After 10 minutes, it stopped and I made an attempt to fall asleep. 15 minutes into my sleep, it came back worse and longer. I took 4 Advil as an attempt to stop it, but that did not happen. The pain would leave after 10 minutes and return about every 15 leaving me with no sleep. As soon as it would stop, I would fear falling asleep.

I called a friend of mine to cancel a dinner I had due to getting no sleep. She stopped by and took me to the ER. I had 3 episodes in the waiting room which scared her to see me in such pain. Once I was seen by the doctor, I was told this could be Cluster headaches which commonly get misdiagnosed as being Sinus Infections. (which is what I was told I had 2 weeks ago). I am currently on a high dose of antibiotic as well as a steroid pack. They said what I am taking should have taken care of the infection, but to give the meds a chance. However they are not going to rule out the clusters. They sent me home with hydrocodone and advised me to follow up with my doctor.

I get so mad when I explained these pains to people who compare them to a migraine! I've suffered from migraines and there is NO way to compare them! I felt nothing last night, due to passing out after being up for 32 hours straight plus I went to sleep at a different time. I will admit I am a little scared to go to bed when I get home from work tomorrow morning knowing that is the time these monsters pay me a visit!

A first bout or two with clusters may not align with all the classic symptoms, which makes for misdiagnosing.  The pain is telling though.



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and advised me to follow up with my doctor.

A headache specialist referral would be good too.  Time is a factor.

There are a good many measures you can take on your own if diagnosed, getting oxygen and preventatives require prescriptions, but oxygen can be had otherwise, and there are alternatives.

Keep in touch here.   

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This is a far more complex area of medicine than is generally appreciated. Many docs, even neurologists, lack bacic education/experience with Cluster--and your symptom picture is a bit "iffy". So, a specialist, if at all possible.
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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. 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.

Welcome to the board.....and what they said! CH is an orphan disorder, it's rare and it doesn't kill you....though there have been times when that didn't sound too bad  ;)...so it's hard to get your gp to understand what's going on. "It's just a headache"...makes you wanna drive his stethoscope through his eye, touch the back of his skull, and ask him if THAT'S just a headache. ;D

The quicker you can get seen by a headache specialist neurologist the better. Continue to read these boards and learn ways to manage the day to day issues of CH. But a specialist is your best bet at an accurate diagnosis and an effective treatment plan.

Joe

Welcome!

If I meet someone who I don't know very well, I will just tell them I have a neurological disorder.

If I have to explain what a cluster headache is, I say "calling it a headache is like calling childbirth a stomachache".  Most of my friends (since I'm a woman) get that......

Might also be worth checking the possible side-effects of hydrocodone to see if it's really what you want and need.

Hopefully the steroid pack is working. If it is that is not necessarily an indication you do have CHs, but keep in mind many of us have found this to be an intermediate med and not a full on cycle stopper. Let your doc know what happened while taking the roids. Blessings. lance

Konaone, I'm so sorry to hear you're having this problem.  If they're Cluster Headaches, welcome to the club.  I'm new to this site myself and have been addicted to reading about what other people are trying and recommending.  But as Groucho would say, it's not really a club you want to join if it means having CH is the ticket price.  I hate to be a naysayer, but I'd fall out of my chair in disbelief if any of the drugs you've been given will make a real dent in the pain.  Until you can get in to see a neurology specialist (and when you're trying to get an appointment tell them you suspect you have episodic clusters and can't wait weeks to get in -- the spell might have passed.  If they don't know what an episodic CH is, keep on going to the next neuro b/c you want to make sure you have a neuro who's sympathetic in the future to your demands of "I gotta get in tomorrow, not next week.").  Most neuros have samples of some of the drugs that people are recommending on this site -- some insurance companies might give you a hassle about getting some of the drugs -- best to see if you can get samples to see if it even works for you before getting the prescription filled and fighting a battle if need be.  Get them to prescribe oxygen -- cheaper and for most people, more effective without all that toxins of the drugs.  Until then, when the pain hits, slam a Red Bull as fast as you can (the caffeine blows open the veins and capillaries I believe and, at a minimum, will bring the pain down to a more manageable level).  Coffee doesn't really work that well for me -- might be the addition of the sugar in the Red Bull that gets it into your system that much faster, or maybe Red Bulls just have that much more caffeine, I don't know.  If you have to go back to the ER room, tell them to give you oxygen right away (through a face mask, not the nose).  Don't lie down, sit up, staring at the floor, with your elbows on your knees (that's what my neuro just told me the other day).  Hope this helps.