I have woken shortly after going to bed 3 nights in the past week with the most awful headache imaginable, with a frequency of every other day. I can't truly to justice to the pain in words. I was writhing in pain, and in tears throughout the ordeals. They have generally lasted about 3 hours, and are localized behind my left eye and into the temple area.

I initially thought that it was a sinus infection, or something of the sort based on the location of the pain, and was trying everything possible to counter for sinus pain with no results.

Based on the pattern that has developed, I am due for another attack tonight, and although I rarely go to the doctor, I was horrified by the prospect of going through this all again and am willing to do just about anything to stop it.

I have just returned from the doctor visit where I was diagnosed with having cluster headaches and have been prescribed imitrex nasal inhalers for "immediate relief", and isoptin to reduce blood pressure as a preventative measure for the headaches.

If anyone has any advice or suggestions for me, it would be greatly appreciated. I'm trying to read up on the condition right now, and find out as much as I can about reducing the effects of these headaches.

Welcome to CH.com, Jay.

On the one hand, I'm very sorry to hear that you've been diagnosed with cluster headaches.  I wouldn't wish this on my worst enemy.  On the other hand, I'm glad to hear you were diagnosed so quickly--CH is not well-understood in the medical field in general, and people here have struggled with these for years before being diagnosed correctly.  It puts you in a good position to be able to manage your headaches early on.

In general, imitrex nasal spray has proven to be helpful to a good proportion of people here, although the injections are generally considered to be faster and more effective.  Isoptin is verapamil, which has proven to be an effective preventive strategy for a great many people here.  The amount you take may need to be adjusted by your doctor until you find the most effective dosage.  Expect that.  It's highly individual.

Sounds as if your doctor is on top of things.  One thing you haven't mentioned that you're going to hear--a lot--from other folks here is the use of oxygen as an abortive.  It must be delivered at 12 lpm or higher via a NON-rebreather mask in order to be most effective.  As an abortive technique, oxygen is highly effective for about 70 percent of us.  The side-effects are few, and it's very reasonable in cost.  Others who are more expert than I will be along to give you more specific information about oxygen to discuss with your doctor.

Again, welcome.  Have a look around, and ask all the questions you'd like.  We'll be happy to help in any way we can.

Best wishes,

George  

Welcome to your new family.  ;)  I, too, am so glad that you got diagnosed so quickly!  I'll go ahead and mention clusterbusters.com- it has saved many lives.  And O2, of course, and stay away from narcotics if you can.  AND- read, read, read, read this site.  You'll find enough info here to get an honorary degree in neuropharmacology.  :D

PFDANS
Paige

Hi Jay and Welcome to Clusterville

 Go buy some lottery tickets . . . you are incredibly lucky to have gotten a diagnosis that quickly.  Years for many . . . 13 months for me.  Glad you have a doc who is familiar with CH.  With the info you're going to be able to gather here . . . . you'll be better able to help him help you.

 It was Verapamil that did the trick for me.  You doc will increase the dosage until you reach a manageable level.  You might have some constipation . . . many do (I did), but that's easily countered by diet change or stool softeners.  Also, (especially as dosage increases), you might notice what we refer to as the Verapamil "buzz" which may last 45 min or so . . . you get used to it fairly quickly.  Verap is a blood pressure medicine and your doc should be monitoring your BP regularly.

 OXYGEN!  A must-try abortive.  I can't use Imitrex in any form (have some artery blockage and high cholesterol), so 02 is my only abortive . . .  can usually kill him in minutes if used early-on in the attack.  You need a script for 02 and a regulator that puts out at least 15 lpm.  You also need a non-rebreather mask.  Please look at the "oxygen info" link on left and the 02 info at the top of the "Treatments" board.  There are (recognized) links you can copy and take to your doc to help acquire the script . . . . and if your insurance won't pay for 02 . . . it's CHEAP compared to any other abortive.

 For the night hits.  Check the supplements rack at the drug/health store and get some Melatonin (3 mg).  Take 45 minutes before bedtime . . . most here use 9-12 mg.  I'd suggest you try 6mg, then 9mg, then 12mg, to assess the effectiveness of warding off a hit, and also to get used to the grogginess you can have when using Melatoinin . . .it' normal, so don't get freaked if you have that reaction.

 You have much reading to do.  Ask any questions you might have.  You've just found the motherlode of CH info/caring/sharing.

   Be Safe,   PFDANs

       Richard

Welcome to the nut house family!

In case you haven't heard ...oxygen ... oxygen ... oxygen ... oxygen ... OXYGEN!!!  LOL!!

Here are the links that were mentioned above.  Read them both, and it should answer most of your questions:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE
and
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Good luck, and don't be afraid to ask any questions that you will have!


Chuck

Start to learn about your new companion! Start with the OUCH site (left), exploring the many links you will find.

This is a good starting point--gives a nice overview. Follow the link to get the whole article.
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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 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]

Hi and welcome!  Another vote for 02!  Read everything you can find here, print stuff to take to your Dr. , and try to get 02.  Really important to use it properly--at least 15 lpm with a NON REBREATHER mask.

I thought I had a dental problem when mine started. And I thought my head was going to explode.  Or that there was some horrible tumor growing in there.  At least knowing what's going on reduces the fear factor and you know it will end--till the next time.

On the positive side, you get to meet all these really great people!
Tabitha