So, this is my third post because I had two specific questions, but... here's the complete run down.

1. Because the medical training, experience and skill level of physicians who treat complex headache disorder is so uneven in the U.S., much less in the rest of the world, we need to know where you live. Our diverse membership will be in a better position to identify local resources for you—physicians, specialty clinics, and so on—if we have this base line information.
   
I'm in school, so I live essentially in two places. At home is in northern NJ, very close to New York City and close enough to Philadelphia for an easy day trip. Out at school I'm in Wisconsin, close-ish to both Madison and Milwaukee and also the Neuroscience Group of NE Wisconsin which is in Neenah, I believe.

2. Then it would help us if you would give a grief history of your experience with disabling headache. A brief outlining of information such as these kinds of data would be most helpful:

A. Have you been diagnosed with Cluster?; when?, by whom (doc’s specialty). Are there any other medical problems which concern your doctor?


Yes and no. I was diagnosed with CH by two neurologists, and tentatively with Paroxysmal Hemicrania by a HA specialists who I am currently with. The only other big health concerns my doctors have, especially in regards to my headaches, is that I am a smoker... although now I've started NRT (nicotine replacement therapy) and am not smoking anymore. Dr. doesn't have a problem with continued nicotine consumption at least for the duration of the quitting process.


B. What treatments have you used, or are now using? Med, dosing, duration of each, your judgment of the usefulness.

I guess the first and foremost thing I should mention is my headaches have only been going on since February of 2010 and I was first treated in April of that year. I have not had any break other than maybe 3-4 days "off" from here to there; at the moment it seems to be manifesting itself as a more persistent and chronic condition rather than cyclic. They began about a month after I had to wean myself off a rather large dose of opiate painkillers that I had been taking for an unrelated health problem. I have asked about medication overuse/rebound headaches with that specifically, but my doctors aren't so sure.

Forgive me if I can't remember the doses of everything because there have been so many different medications I've been on, though I remember most. The first preventative I was on was Amitriptyline and I believe it was 75mg/night by the time we increased the dose. First I was prescribed Midrin and Imitrex for abortive (alternatively, of course). The Midrin had not effect and the Immitrex made me nauseous plus I had a big problem with discomfort around the injection site. Then we tried Migranal nasal spray (which I think is DHE) and that didn't work well either. At various times I have also tried Toradol, Fioricet, Tylenol 3, Relpax and Amerge without success. After a while on the amitriptyline with no help, I went off of it. This was all between April to mind-June of 2010.

For most of the summer last year I was on Topomax (150mg/night by the end) for preventative and Maxalt-MLT for abortive... whatever the standard dose of that is. The Topomax and maxalt both worked great for a while. I was still getting headaches but not nearly as frequently as I used to. Unfortunately, after about 6 weeks my headaches came back.

This past winter I had my first appointment with a HA specialist in NYC, the same who diagnosed Paroxysmal Hemicrania. Because of that, he put me on Indocin (150mg/day) for preventative. It worked great at first, but stopped being effective after around 2.5 months and eventually caused an internal bleed. My other neurologist-- not HA specialist-- who is out here in WI prescribes Zomig 5mg nasal spray for abortive, which only works if I catch my headache in the first minute or two. Part of the problem with the Zoming, in addition to needing to act QUICKLY, is that sometimes I do indeed get a "shadow" of a headache without it getting full blown, so I almost never know when I must take action with the zomig.

I am also on Percocet and Dilaudid; both are really only for the most dire of emergencies because like most people I cannot afford to go to the ER 4+ times a month. I get many more headaches than 4x a month, but I obviously try not to go to the ER unless the pain is making me suicidal and/or nothing I have is easing it. The Percocet dosing per headache is 2 7.5/500 tablets (I have a built up tolerance from last year when I was on opiates for such an extended time) and the Dilaudid is 4mg. I would say between the two I take those roughly 5x a month so not incredibly often. I have also done a Prednisone run as well as Dexamethasone (at different times, of course). My HA specialist had my try Stadol (Butorphanol) nasal spray once but it didn't help at all and it made me so nauseous I vomited for 3 hours even though I took a Compazine. I am on Inderal for high BP but I've heard that can help with headaches.

Currently, as of about 2.5 weeks ago, I've had to stop taking the Indocin because it caused the previously mentioned stomach bleed (but I'm OK). So right now my preventative is over-the-counter melatonin, 9mg, as recommended by HA specialist. I'm still on the Zomig, Dilaudid, and Percocet for abortive but really am in a living hell at the moment because the Indocin did not really help to begin with and the Melatonin is even less effective. I am in a great deal of pain every single day and simultaneously trying not to take so many abortives that I get rebound headaches and stay out of the ER. Not easy. I'm writing this during what feels like very few painfree moments I can enjoy recently.

I do have an appointment coming up with Thomas Jefferson in Philly on the 14th which can't come soon enough.


C. Have you used or explored any alternative treatments (and ditto)?

While I've not explored or used many, I have gotten some therapeutic massages and do yoga actively.

D. Give a brief picture of the degree of limitations you face because of the headache and any social complications which they cause. How is your social support?

My social support, for the most part, is wonderful. I am a college student at a very small liberal arts school and I am fortunate that my parents are phenomenally supportive and understanding (my mother used to get migraines as a teenager) and all of the faculty and administration at school have tried to be as accommodating as possible. Unfortunately, for the past year and ESPECIALLY the past 4 weeks or so my headaches have gotten seemingly so much worse. This started before I even had to go off of the Indocin but certainly became more volatile without any preventative, even if it wasn't doing THAT much good.

My headaches are, like many of yours, completely disabling. This term I had to withdraw from most of my classes and now, as I mentioned, feel like I'm in pain for the better part of the day. My headaches do not really adhere to a timing schedule-- as in, they occur at any point of the day. Sometimes they wake me up, others not. The biggest impact my headaches have had are on my school performance. I am a musician, and have been almost unable to play since they've started.

E. Do you have a good, basic understanding of Cluster and its treatment or do you want sources of  information about these complex disorders. (Because there are many dozens of kinds of headache, and treatment often erratic and lengthy, we would encourage you to start a headache diary.       

I feel as though I have a relatively good understanding of CH, but I am always open to new literature or if anyone has any bright ideas as to any medications it sounds like I haven't tried (so I can at least bring it up with my doctor, that is). Again, I have an appointment with Jefferson coming up but until then I feel like I'm going a little crazy.

Zac

Yes, great information. But, no questions. It sounds like you have a handle on the direction you wish to go...or not. If you have any questions, though, please feel free to ask. Blessings. lance

Mike NZ wrote on May 31^st, 2011 at 1:49am:


Unfortunately, oxygen does not help quell an attack for me. I have tried in the ER to get the correct amount and time and time again my HA do not go away until pain medication is administered. I realize this may mean I'm not dealing with CH but regardless of the diagnosis I've found very little that has helped. Re. Verapamil and Lithium... I've never had Verapamil and am not familiar with it but I cannot take Lithium because I have a psychiatric history and am currently on an anti-epileptic/mood stabilizer (Lamictal) so any psychoactive medication is off the table.

Bob Johnson wrote on May 31^st, 2011 at 9:05am:


Yes, I realize that is definitely not first-line treatment. The problem I have run into and what my Drs are trying to be cognisant of is that I have tried many, many options and very few things help abortively, one of them being opiate painkillers. (Nothing has truly helped preventatively either, but that's another story). They are also conscious, as am I, of limiting the amount I take, but when I end up in the emergency room what almost always ends up happening is I need IV narcotics to even touch my HA so having those medications at home saves about $500 each trip, even with insurance. Of course they take longer to kick in than an injection, nasal spray, or sublingual tab but my headaches vary so much in duration (anywhere from 1-6 hours, which I realize is also not particularly cluster-like) that the time is worth it.

Oxygen also works best when started as soon as the pain of a CH starts to build. So the delay in having to get to ER first may be what is making it ineffective.

Most people will try to be within a few minutes (or less) of their oxygen.

I'm surprised that verapamil hasn't been tried as that is probably the most common preventive used, however I'm not a medical doctor, so there may be other reasons why it isn't suitable for you.

With the use of pain medication, this is how I was inititially treated before my CHs were correctly diagnosed. They did little to impact the pain other than pretty much knocking me out after about 25 minutes or so. I no longer use any pain medication as I can kill of CHs in a few minutes with oxygen.

Quote:


Please be advised that narcotics are generally known around here to cause rebounds headaches from hell and of course no one wants that.

Oh certantly.  Over-use of Triptans can indeed cause rebounds.   However....with narcotics you not only get rebounds, but you also have another problem to deal with, which is addiction.   Narcotics are great if you've had a tooth pulled or after surgery for a few days.  With CH, which is an on-going pain, narcotics are something the majority around here will tell you is a huge no-no.  Most...say it does no good what-so-ever anyway so you must decide for yourself what is right for you.  Myself?  I'll take 10 mins. of pure 02 over any narcotic.  It's safe.  It's cheap. It works and there is nothing else that works for me like that blessed oxygen.  You will find many, many more who will agree with with me on this whole subject.