Good Morning,

I'm a 48yr old male and seem to be in my 2nd cycle. I say "seem to be" because I've not been diagnosed. I've watched lives ruined from dozens of various misdiagnosis and haven't an ounce of trust in the medical industry's ability to diagnose anything. I fear I might need to get over that. Anyway...

In early 2009 (Feb) I had a 3wk period where I got horrible, crashing pain on the left side of my head (temple, deep sinus and particularly behind the eye). During this period I experienced probably 10 or so short-duration 'explosion' sessions (each lasting between 30 minutes to an hour). Given my disposition to medical treatment, I simply irked through them. They hit fast and hard and lasted about an hour. I actually made a log (suspecting CH) and forgot about the issue as they stopped.

Then, starting about a week ago they hit again. This time the pain was incredible. Some are 'bearable' but many are so overwhelming that its difficult to keep my composure at all. I've tried all sorts of things on my own. I've been through quite a bit, and I've never felt this intensity of pain - there just aren't words. In any case, I've been getting hit 1-2 times per day, usually at night just about an hour or so after getting to sleep. They wake me up and I have to go sit somewhere and grunt and rock until they're done. I've done extensive web research and it *appears* that CH is my issue. During an unrelated emergency a few months back, I had a CAT and MRI with no abnormalities.

Reading through the forums here I'm overwhelmed with the amount of information there is from sufferers but saddened by the horror stories of misdiagnosis and expense. I don't know how much longer I can do this. It drains me of all my strength and will.

In any case, I'd hoped to find a place where tips, tricks, ideas and info exchange might be had. I'm really glad to have found the message board here. Just for kicks and giggles I've been doing the water thing; no idea if its helped but I have a sneaking suspicion it might be.

In any case, I should go back to bed... thanks for the opportunity to introduce myself.

Thanks

Avoid the trap of TOO much cynicism. Problem is that CH is such a very minor disorder (in terms of #s of people involved) that docs receive strikingly little education/training in a very complex area of medicine. (There are far more varieties of headache than most realize and sortin thru them to make a good diagnosis is a task requiring skill/experience/patience.)

The good news is that the range of effective treatments has increased a good deal in the last 30-years. It's possible to get good relief/control once you find the right doc. Why we suggest, if at all possible, that you seek a headache specialist (not any general neurologist--they have as little education as others.)
--
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.
=======
We have also learned that we often have to know about CH than do our local docs. If you find one with an open ego, you can supply him with the medical literature which will guide treatment. That's second level best approach, but has worked for many of us if you cannot access a specialist.

Ergo, learning about CH/treatment, etc. is essential. Knowledge not only leads to good treatment but it also tempers anger/anxiety, etc. which is the by-product of ignorance.

So, since you have been reading here already--give us some ideas of what kinds of info. you need. There are many artricles, etc. which are regularly posted and so would like to feed material which needs your current needs.
====



Cluster headache.
From: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE (Orphanet Journal of Rare Diseases)
[Easy to read; one of the better overview articles I've seen. Suggest printing the full length article--link, line above--if you are serious about keeping a good medical library on the subject.]

Leroux E, Ducros A.

ABSTRACT: Cluster headache (CH) is a primary headache disease characterized by recurrent short-lasting attacks (15 to 180 minutes) of excruciating unilateral periorbital pain accompanied by ipsilateral autonomic signs (lacrimation, nasal congestion, ptosis, miosis, lid edema, redness of the eye). It affects young adults, predominantly males. Prevalence is estimated at 0.5-1.0/1,000. CH has a circannual and circadian periodicity, attacks being clustered (hence the name) in bouts that can occur during specific months of the year. ALCOHOL IS THE ONLY DIETARY TRIGGER OF CH, STRONG ODORS (MAINLY SOLVENTS AND CIGARETTE SMOKE) AND NAPPING MAY ALSO TRIGGER CH ATTACKS. During bouts, attacks may happen at precise hours, especially during the night. During the attacks, patients tend to be restless. CH may be episodic or chronic, depending on the presence of remission periods. CH IS ASSOCIATED WITH TRIGEMINOVASCULAR ACTIVATION AND NEUROENDOCRINE AND VEGETATIVE DISTURBANCES, HOWEVER, THE PRECISE CAUSATIVE MECHANISMS REMAIN UNKNOWN. Involvement of the hypothalamus (a structure regulating endocrine function and sleep-wake rhythms) has been confirmed, explaining, at least in part, the cyclic aspects of CH. The disease is familial in about 10% of cases. Genetic factors play a role in CH susceptibility, and a causative role has been suggested for the hypocretin receptor gene. Diagnosis is clinical. Differential diagnoses include other primary headache diseases such as migraine, paroxysmal hemicrania and SUNCT syndrome. At present, there is no curative treatment. There are efficient treatments to shorten the painful attacks (acute treatments) and to reduce the number of daily attacks (prophylactic treatments). Acute treatment is based on subcutaneous administration of sumatriptan and high-flow oxygen. Verapamil, lithium, methysergide, prednisone, greater occipital nerve blocks and topiramate may be used for prophylaxis. In refractory cases, deep-brain stimulation of the hypothalamus and greater occipital nerve stimulators have been tried in experimental settings.THE DISEASE COURSE OVER A LIFETIME IS UNPREDICTABLE. Some patients have only one period of attacks, while in others the disease evolves from episodic to chronic form.

PMID: 18651939 [PubMed]

---

Quote:

I don't know how much longer I can do this. It drains me of all my strength and will. In any case, I'd hoped to find a place where tips, tricks, ideas and info exchange might be had. I'm really glad to have found the message board here. Just for kicks and giggles I've been doing the water thing; no idea if its helped but I have a sneaking suspicion it might be.

Fighting with the Beast can be an exhausting adventure, and a depressing one.  You can go on, but there is no need to go on without more weapons in your arsenal. What we have found are more than tips and tricks. Here you will discover a wealth of info about how to best manage what seems like a visit to Hell's worst levels, and while the interventions cannot transport you to paradise, they can bring you back to this world and a more fully functional life.  Read, read and read some more. Especially look at the O2 link. If you think water is helpful, wait til you try this! Blessings. lance

Bob Johnson wrote on Jun 15^th, 2011 at 7:29am:

Avoid the trap of TOO much cynicism. Problem is that CH is such a very minor disorder (in terms of #s of people involved) that docs receive strikingly little education/training in a very complex area of medicine. (There are far more varieties of headache than most realize and sortin thru them to make a good diagnosis is a task requiring skill/experience/patience.)

Thanks much for the welcome and links/attachments.

Yes, your advice is good. I'm not exactly sure how I'm going to overcome my past experience with doctors. Frankly, its very dark and very negative - I've seen far more damage done than good. How ironic that with this condition setting in that I now must somehow confront it. :)

I'm weak, depressed and this whole thing is greatly darkening my outlook on life. I have to do something other than just hoping that my current cycle will end. I've always irked through pain, no matter how much. I'm FAR from macho, I just have a philosophical outlook that wants nature to take its course. This time, she's kicking my butt HARD. Last night I had my first '10'; funny how fast sanity wanes (not to mention dignity during attacks).

No docs in my area, but some in the KC area I see. Unfortunately, I'll have to start with my primary care provider if I want insurance to cover anything - and I fear I know how that's going to go.

Thanks again for the welcomes and words of encouragement.

Cheers

wimsey1 wrote on Jun 15^th, 2011 at 7:57am:

Quote: I don't know how much longer I can do this. It drains me of all my strength and will. In any case, I'd hoped to find a place where tips, tricks, ideas and info exchange might be had. I'm really glad to have found the message board here. Just for kicks and giggles I've been doing the water thing; no idea if its helped but I have a sneaking suspicion it might be. Fighting with the Beast can be an exhausting adventure, and a depressing one.  You can go on, but there is no need to go on without more weapons in your arsenal. What we have found are more than tips and tricks. Here you will discover a wealth of info about how to best manage what seems like a visit to Hell's worst levels, and while the interventions cannot transport you to paradise, they can bring you back to this world and a more fully functional life.  Read, read and read some more. Especially look at the O2 link. If you think water is helpful, wait til you try this! Blessings. lance

Thank you - yea I'm in intrigued by the O2 potential for relief. I've read the good information here and, once again, I suppose I'll simply need to jump into the merry-go-round of bad doctors, expensive tests, misdiagnosis, etc of trying to obtain the right tool for me.

Thanks again for your nice reply

Sorry, can't resist being a smart ass....

"Nature's course" leads to death. Medicine is our struggle to knock her off course for a few decades.

I don' see any moral virtue in suffering which can be prevented or stopped.

Bob Johnson wrote on Jun 15^th, 2011 at 10:11am:

"Nature's course" leads to death. Medicine is our struggle to knock her off course for a few decades. I don' see any moral virtue in suffering which can be prevented or stopped.

No, I don't see any 'virtue' in needless suffering. I'm just one of those people who have - thus far - avoided medicating themselves. As I alluded to above, its likely time I re-evaluate that.

Thanks for the kind words

In the middle of a 7... sometimes I've found that purposefullyy concentrating on other things (in this case a message) can help pass the time. I let my wife see me this time... on the one hand I think she should know, on othe other hand it distresses me that she see such a thing.

Anyone have any advice on how to deal best with a loved one? I generally shut myself up and don't let her hear... thanks in advance.

PS: "Death is natural"-type replies - while accurate - don't help much.

Hi there Khethil.  I'm a supporter to my husband.

I would say the best thing is to have a conversation with your wife about what you need while battling the beast.  If you want to be left alone just tell her.  My husband likes to be left alone so he usually goes to the bedroom.  I will bring him an energy drink and an icepack and then I leave him alone.  If he's in there for a long time I will crack the door and peek in just to make sure he's ok.

Also there is a supporter's section here.  Encourage her to come here and talk to us.  There are some awesome supporters here that will help her.

I too have found that purposefully concentrating on other things when possible, up to Kip level 7 or so, can be worthwhile.

Besides having entire episodes knocked out cold, many folks around our age are reporting that the clusterbuster approach also helps with their CH induced PTSD.

This Newsweek article makes a good introduction to clusterbusters if you haven't read it yet:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Just reading what you have written it sounds like you do have CH. They SUCK!! This site will help you so much. My dr at first seemed a little put off when I walked in and showed him the medical info I printed off from this site, and once did ask, "Are they really worse than migranes?" but he is great now and listens to me and has been researching CH's himself. Get some relief!! Don't suffer!!!

Welcome to CH.com, there's more CH info here than most Doctors will ever have. One of the best things any of us can do for CH is educate ourselves about the best treatments. It's in your own best interest to know all you can about CH.

I too, 'hide' when getting an attack. It took awhile but my wife knows to just leave me alone, even on the road. I've had CH for 23 yrs and we're still together. It was hard for her at first because she wanted to help. "Not unless I ask pls."

Don

I also hide...from everyone. But about a year ago I read a post here about the suffering our loved ones go through when we are having a terrible cycle, or a really bad hit. It opened my eyes to how helpless they feel watching us in pain. Since then, I have worked out a list of what they can "do" for me...get me a Monster, point me to O2 if I haven't gotten to it yet, have a trex or migranal at the ready, answer the phone for me, keep others away no matter how well meaning they may be...in short, the human desire to assist those we love is so overwhelming it really is up to us in our better moments to be considerate of them because all consideration goes out the window when it hurts so bad.

By the way, I'm not so sure death is a "natural" experience except in the most limited of contexts: that it occurs throughout "nature". I am not a radical materialist, but rather an Alexandrian idealist. I think we have a mortal body and an immortal soul. Having said that, I agree there is little virtue in suffering for the sake of suffering. But when unasked for suffering comes our way, remember the Velveteen Rabbit! Blessings. lance

Back to your comments in #3 about how to overcome the cynicism. It's surely a critical barrier both to emotional comfort and the capacity to seek good care. As you are aware, cyicism works as an automatic filter so that we always tend to hear/see what fits our perspective.

This link is only a tease which does lead to a very well researched/effective/widely used method for making a change.

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