Hey Scotty,

Lotsa plenty familiar stuff in your post there.

It has become abundantly clear that doctors, including rank and file neurologists, are largely a bunch of ignorant harm doers when it comes to CH.

Your absolute best hope in the doctor realm is a headache specialist. Not that they aren't a bunch of greedy and negligent a-holes also, the way they routinely require CH'ers to wait months for an appointment, but at least they tend to be knowledgeable about CH.

Meantime, if your self diagnosis of CH is correct, some of the most effective, most successful  treatments can be found out about here at this site - so congrats for making it here!!  8-)

Oxygen as an abortive, administered in the newer High Flow, non rebreather manner as outlined in the oxygen info link to the left of this page, has been a lifesaver for so many.

I too recently had a string of ever increasing shadows, concerning me that another episode was looming. They stopped short and have been gone now for a couple months though, since I tried the clusterbusters.com  approach for prevention. That result is nothing though compared to the severe chronics who have found great relief this way and gotten their lives back. Here's an introductory video on the subject: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Hi 1er
Welcome home.

Sounds like you have a handle on what you need to do with the doc. Get a new one.
And enough experience to train them a bit.

Take the cluster quiz in the tabs on the left.

Lots of input around here to come. Theres a few over the counter ready things like caffeine, energy drinks, and such that may help with the shadows but you've probably read that allready. Some folks are having big results with them.

Most of the triptamines have a much longer life than the expiration dates, some of the mixed meds can get stronger as one ingredient deteriorates in strength. Be carefull and be well.
You have come to a good place.

Welcome aboard, Scotty. And may I say, sorry you need to be here. But...yes, it does sound as if your symptoms match those of a cluster attack. And I can only agree with the advice you've been given. Make defeating this you're #1 goal in life, and read everything here, and take notes, and try what you haven't tried that has worked for others. We do believe the beast is controllable. Also keep in mind that we often require much higher levels of meds and OTC stuff than do non Clusterheads. This can make a huge difference in the effectiveness of a prevent or an abortive. Ask any and all questions, and someone will get back to you. I promise. God bless! lance

Welcome and listen to these guys, they know there stuff around here! Not much this newbie can add except to say that this site has allowed us (husband has CH) to go from being afraid of this thing to being on the attack! It's a shift in perspective that has made all the difference. Also the realization that there is literally not enough years in a lifetime to try everything to treat his episodes- the door thrown open on treatment options was a amazing, knee buckling suprise at a time when we throught we had no options.

Be strong, we understand, and we'll be here!

It will save much pain and time if you find a headache specialist now--NOT any neurologist, but someone with training/experience with complex headache disorders. CH is such a minor disorder re. numbers, that finding knowledge is often the major issue.
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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.
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Self-education is the next major step. Knowing about treatments will give you a leg up in talking with your doc and getting a sense of whether they know enough to help you.

Start with the OUCH site, left, and it's many internal links.

Print the PDF file, below.
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Print the entire file.....




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]
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Read the messages here and you will see yourself, glean help and hope.

Stop the pain meds; they tend to make headaches worse.

Getting a good diagnosis first is critical. There are many, many kinds of headache disorders--with overlapping symptoms, sometimes masking other, quite serious disorders. Cutting thru the thicket of possibilities is a must to getting effective treatment.

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Hello everyone thanks for the info and the posts I took the cluster quiz and to no surprise the answer I got was what i have figured all along. I am going to continue doing research for doctors who specialize in headaches here in Alberta and hopefully find one and get into see them. Does anyone get a aching jaw when the get these attacks? Thanks again.

Not too much jaw pain but neck pain is a SOB for me.

This web site has already helped! There are two doctors that I was able to get names for in the OUCH web link that are in my city. I have a starting point which is more than I have ever had.

Hey Scotty,

So glad to see that you found this place!!  My only advice for you is that when you see your doc DEMAND oxygen!!  It really can make the most enormous difference to how you cope with CH.  Knowing that you can abort a hit in such a short amount of time just about eliminates all fear associated with the pain of CH.

I wish you all the very best,

Kate

BTW I usually know that a cycle is about to start because I get that tingling feeling in my temple on and off for a few weeks before it starts up.

Welcome Scotty!

Sounds like you are headed in the right direction, see a GOOD Neuro or Headache specialist ASAP!

Whilst you're waiting to get into the Neuro or a headache specialist here are a few over the counter helpers:

4-Way Nasal spray or Dristan 12 Hour Nasal Spray helps with the annoying congestion.  ** Note ** Do not use this more than 3 days in a row!!  It can cause severe sinus problems.

Taurine and Caffeine drinks (RedBull if you like it) to help prevent a hit when you feel one starting.

Melatonin or an Allergy (Zyrtec aka cetirizine works for me) pill at night before bed to help avoid night time hits.

The herb Kudzu has helped a few as a prevent.   

Deep breathing through the milder hits can help too.

Hot/Cold Compresses Depending on your preference can help as well.


Make sure you start a headache journal, you can make your own, here's what you will need to note on it.

Day/Date:      
Time of Day of CH hit:   
On pain Scale 1-10 10 being highest what is your pain at?
Duration of Headache:
Symptoms that come with your Headache:
What, if anything you tried to get rid of HA:

You can make up your own HA Journal and if you get more than one in a day use 1 piece of paper/page per day, or you can use MS Excel for this.

Kate in Oz wrote on Oct 12^th, 2010 at 7:33pm:

Hey Scotty, So glad to see that you found this place!!  My only advice for you is that when you see your doc DEMAND oxygen!!  It really can make the most enormous difference to how you cope with CH.  Knowing that you can abort a hit in such a short amount of time just about eliminates all fear associated with the pain of CH. I wish you all the very best, Kate BTW I usually know that a cycle is about to start because I get that tingling feeling in my temple on and off for a few weeks before it starts up.

My first sign starts from a sharp feeling in my sinus area like I am breathing really dry air.

Ginger S

Your Avatar is a little morbid but so true lol haven't had to bang my head other than with my hands and I pray it never gets to that point!!!

And thanks for the advice I will start a journal no doubt about it.

Just another dad wrote on Oct 13^th, 2010 at 2:54pm:

Ginger S Your Avatar is a little morbid but so true lol haven't had to bang my head other than with my hands and I pray it never gets to that point!!! And thanks for the advice I will start a journal no doubt about it.

Nah Not Morbid ... Just Twisted like my sense of humor  ;D   

Glad you will start a HA Diary, it helps if the Doc can see something in black and white as to what you are going through.

I deleted my original post because when I read it again some of the stuff I wrote didn't make sense into how I feel and what happens when I have a so called hit. For example when I have an attack or hit as you guy's call it I wrote that my nose would plug up and when I tried to blow it there would b nothing there. When it is exactly the opposite it seems like the mucus or snot or whatever you want to call it won't stop.

  I also wrote that I had my first experience with these when I was in my mid to late 20's and now I am 41 and for the last sixteen years I have been dealing with these pretty much on my own because my stubborn ass doesn't go to the doctor because I don't like doctors.
  It was just last year that my wife did some searching online and made me aware of this thing called cluster headaches and from the minute I read about them I said "that is me!!" So it has just been within the last year that I have really tried to learn about this rare condition.
   I guess what I am trying to say here is all that other shit that I wrote was not necessary and a lot of it was a bunch of babbling I think I was trying to convince people that I have the same thing, and honestly I believe I do.
   I have an appointment with my Doctor tomorrow to have him refer me to a neurologist who's name I was able to get from the ouch website and I tracked him down from the website for the Alberta physicians and surgeons. He is a neurologist with a special interest in headaches, their diagnosis and treatment.
    So with all that being said I want to start again and say:

Hello Everyone I am here because I believe with everything in my being that I suffer from this debilitating disease.  :-[ and I am glad I found this site.

Hmm... I didn't see any need for you to delete your initial post, but that's me.


Quote:

Anticipation of death is worse than death itself.

Anticipation of death is what happens when you are not Truly Living.

Quote:

Hello Everyone I am here because I believe with everything in my being that I suffer from this debilitating disease.   and I am glad I found this site.

We get it, we really do. Just havin' someone with whom we do not have to argue, or for whom regular headaches ain't nothin' compared to CHs, is a vast relief. Good luck with your visit to the doc. Relief is near, or so I pray. Blessings. lance