Hi, my name is Vania and I have been coming to this website for years now.  I have never written anything on the blog, but I do so now, because this website feels like home in a way...a place where people have experiences just like mine.  I have been suffering from Cluster headaches since I was 16, I am 32 now.  For years I was misdiagnosed...I remember the day when I was told I had Cluster headaches.  Not knowing what that meant I googled it and found this website. For the first time, I felt understood as noone around me could truly relate.  I going on my 5th week this cluster period and last night was just awful...it seems the end will never come.  Any thoughts on the Occipital Nerve injections?  That might be my next attempt of getting some relief.  Currently taking Verapamil, finished Prednisone and bruised from imitrex injections.  Picking up another oxygen tank this morning.  Praying this cluster will finally end....

Welcome, Vania, and yes this is a home away from home for many of us.  We truly do understand. Perhaps you could share a bit more about where you are and what meds have or have not worked in what doses? Do you have a Headache specialist yet? That kind of thing. For instance, you mention verapamil. Past thinking saw Rx's at around 240mg/day when we are finding an effective range to be 240-960mg/day. Same with O2...we have better info now on flow rates. equipment and techniques. Other meds are possible, too, and probably worth considering before you go the ONS route. Blessings. lance

Just re-read your post and you may have been asking about a nerve block rather than ONS. If so you should know some have found it helpful but so many have been disappointed. Others can chime in but it may have more use for episodics than for chronics. Not sure. lance

Sorry to hear you're getting slammed, just a couple f links for you to read. You probably already read this one but just check to make sure you're getting the maximum effectiveness from your 02:

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Then our sister site, the non traditional methods of dealing with CH. We've seen some awesome success stories from some of our members who were at the end of their rope as NOTHING was working, worth a visit and a read:

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So glad you decided to jump in. ;) Welcome home.

Joe

Thanks Lance and JOe!!! :)  I really appreciate your feedback!

Getting the right advice is definetly the key.   As I have been misdiagnosed in the past, I haven't tried a whole lot of different things.   I had a headache specialist for my last Cluster period, but I moved last month to the Boston area and changed my insurance, which just started to become active yesterday.  I am in desperate need of a new doctor, but now I need a referral from a PCP i have never seen...not good. Very bad timing for moving and getting a new job I must say.  So, I am currently self treating myself.  I have been taking Verapamil 240mg daily for about 4 weeks now.  I just increased it to 360mg yesterday since I dont think its really doing all that much.  I also finished a long Prednisone taper- started at 60mg and worked my way down to 20mg--took it for about 3-4 weeks...i think it stop having much of an effect, so i stop taking it.  Havent tried anything else in terms of preventive care.  For attacks I have been using Oxygen via a non rebreather mask at rates of 10-15...i know 15 is suppost to be best, but i run out of oxygen fairly quickly.  Sometimes oxygen helps for a while but the headaches seems to reoccur fairly quickly--an hour later or so.  Imitrex injections work like a charm--but im limited on supply and max doses per day.  Plus, they make me feel really funny.  Maxalt sublingual is much inferior, Imitrex nasal spray works a little,....ice definetly helps but is not enough.  Motrin and Tylenol are like sugar pills.  SO, thats pretty much it.  One thing that has been new for me is that during the day I have a constant headache that wont go away.  Lingers there, all day long.  Not debilitating but very annoying. 
Let me know if you have any advice!! Thanks again! It really helps to know that are people out there that understand  just what you are going through. Makes a difference.  Take care.

I had the same problem with the attack returning shortly after I shut off the 02. For many years I was taking an oral cafergot while I huffed the oxygen, it pushed the next attack way off. This last cycle I tried drinking a sugar free red bull while I aborted with oxygen. It seemed to speed the abort AND push back the come backer hit. Might be worth a shot.

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This link will show you how to get up to 3 aborts from a single stat dose of imitrex. If you're not needle squeamish, you can really stretch out your stat doses.

For the lingering all day "shadows":

4way Nasal Spray. That's the brand name, snort it up the nostril on the same side as the attack. Helps many. Excederin for Migrains will help with shadows, but use this one VERY sparingly, as you can quickly end up with rebound issues from overuse. A double latte, an energy drink, or even really strong coffee helps me with shadows too.

Hang in there, they do end.....never fast enough but they do end.

Joe

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.

Hi Vania

  Try chugging an energy drink (I like Rock Star . . orange . . ) which contains caffeine & 1000 mg taurine) at first sign of attack, along with the 02 and icepack.  My attacks are ramping very fast right now, so have to use ASAP . . . but can kill the beast at Kip 4-5 if used quick enough . . . if I wait 3-4 minutes before getting to the above, I'm getting Kip 8s for 20-30 min.

  Hated the taste of Red Bull the first time I tried it . . . and Monster (though effective) is like cough syrup to me, but Rock Star seems to have a wider range of flavors that are more palatable.

  Hope you get the beast under control soon.

    Be Safe,    PFDANs


        Richard

Check out the Graham Headache Center in Boston out of Falkner Hospital. Dr Rizzoli is the head of the center and a specialist in CHs. And be careful self treating with verapamil. It can cause arrythmias and heart bock. As for O2, 15 is minimal. More is better. Good luck and God bless. lance