Hi I'm a 47 year old female. recently diagnosed with C.H. in March 2010 after months of “chronic sinus headaches”, which I was treated for, for many years. In January they became daily headaches, early morning (like the worst hangover ever) and late evening, with a migraine thrown in once in a while. My GP sent me for a CT of the sinuses and head which came back normal.  I was shocked I had so much nasal congestion, pressure in and around my right eye, pain and pressure on the bridge of my nose and temple area. "How could it possibly be normal"? I than took it upon myself to seek the opinion of a ENT, then a Allergist, no sinus issues or allergies were detected. However both physicians suggested maybe I was dealing with C.H., and recommended I see a Neurologist. I had no idea what this meant. Went to the Neurologist and he confirmed C.H. with intermittent migraine prescribed  Verapamil,  Robaxin before bed and a rescue med. Axert.  I feel this has controlled even lessened the headaches. Now im experiencing  this very uncomfortable nagging pressure in and around my eye and temple area with trouble focusing for a week and a half (since last headache) but not that headache pain, whats this mean?
I find myself still looking for another answer saw the Ophthalmologist last week, for the eye issues, thinking it's a eye condition, right... Wrong, he was great, and knew about C.H., told me my eye and nerves connected to the eye were very healthily and unfortunately I have a potentiality debilitation condition I need to contend with.
OK, Now how do I get beyond this denial.

IMHO, the first step to getting out of denial is knowin you're in denial......sounds like thats where you might be...

Since you've already had a scan of your noggin and 3 different docs that agree on a CH diag......there just doesn't appear to be much room for denial.

Sorry you had the need to find us but welcome!  You'll find a wealth of info here and a bunch of nice folks with years of experience dancin with the beast!!!!

Sending PF wishes!!

Dallas Denny

What you refer to as nagging and uncomfortable pressure is likely what we tend to call "shadows". It's a term coined here by a member and describes pain similar to the onset pain of a full-blown attack, without actually reaching full attack pain levels.

They could be the result of either your preventative medication working in controlling the attacks or they may signal an end of your cycle.

When did your CH cycle start and how much Verapamil are you currently taking?

hello
your story sounds very similar to mine! i have been in cycle since christmas i was recently diagnosed by a specialist with migraine/cluster mix! double whammy! i have been on verapamil since christmas seems to help just when i learned how to get some control over the "beast" is when i developed migraines too! so now im trying to figure out how to control my "chronic migraine" as i was diagnosed with! I too am confused but I am also determined to fight the good fight! So we are all in this together! sorry for your pain but welcome!
anthony

Welcome to the club, great group of people but the dues totally suck! Shadows, ouch. Things I use to deal with the shadows. Energy drinks, I prefer sugar free Red Bull but any containing the combo of caffeine and taurine can help. 4 Way Nasal Spray, that's the brand name. Sprayed in the nostril on the same as the attack helps many. Excederin Migrain formula. But use this one very sparingly as over the counter meds are notorious for causing rebounds and other health issues when used a lot.

You haven't mentioned oxygen, do read the oxygen info link on the left. I'm a 31 year sufferer, oxygen is still my first line and most effective abortive. A real life changer for me.

As far as attitude......CH doesn't go away. Live your life between the hits. It can take away a little bit of your life.......you're kinda stuck when getting hit, but don't give that bastard another second of your life by worrying about it! [smiley=hug.gif]

Joe

Thank you for you responses and thank God for this site.
I'm not sure when my cycle started I was having daily headaches all winter in January they became much worse. I am currently taking 120mg of Verapamil nightly with 500mg Robaxin. I go back to the Neurologist in a couple weeks. I though because my symptoms were different than many of you that maybe the MD's were wrong. These shadows are driving me nuts today its very bad, had a miserable morning.
Thanks again.
Shirlz

Verap dose is low for CH. A widely used protocol:


Headache. 2004 Nov;44(10):1013-8.   

Individualizing treatment with verapamil for cluster headache patients.

Blau JN, Engel HO.

    Background.-Verapamil is currently the best available prophylactic drug for patients experiencing cluster headaches (CHs). Published papers usually state 240 to 480 mg taken in three divided doses give good results, ranging from 50% to 80%; others mention higher doses-720, even 1200 mg per day. In clinical practice we found we needed to adapt dosage to individual's time of attacks, in particular giving higher doses before going to bed to suppress severe nocturnal episodes. A few only required 120 mg daily. We therefore evolved a scheme for steady and progressive drug increase until satisfactory control had been achieved. Objective.-To find the minimum dose of verapamil required to prevent episodic and chronic cluster headaches by supervising each individual and adjusting the dosage accordingly. Methods.-Consecutive patients with episodic or chronic CH (satisfying International Headache Society (IHS) criteria) were started on verapamil 40 mg in the morning, 80 mg early afternoon, and 80 mg before going to bed. Patients kept a diary of all attacks, recording times of onset, duration, and severity. They were advised, verbally and in writing, to add 40 mg verapamil on alternate days, depending on their attack timing: with nocturnal episodes the first increase was the evening dose and next the afternoon one; when attacks occurred on or soon after waking, we advised setting an alarm clock 2 hours before the usual waking time and then taking the medication. Patients were followed-up at weekly intervals until attacks were controlled. They were also reviewed when a cluster period had ended, and advised to continue on the same dose for a further 2 weeks before starting systematic reduction. Chronic cluster patients were reviewed as often as necessary. Results.-Seventy consecutive patients, 52 with episodic CH during cluster periods and 18 with chronic CH, were all treated with verapamil as above. Complete relief from headaches was obtained in 49 (94%) of 52 with episodic, and 10 (55%) of 18 with chronic CH; the majority needed 200 to 480 mg, but 9 in the episodic, and 3 in the chronic group, needed 520 to 960 mg for control. Ten, 2 in the episodic and 8 in the chronic group, with incomplete relief, required additional therapy-lithium, sumatriptan, or sodium valproate. One patient withdrew because verapamil made her too tired, another developed Stevens-Johnson syndrome, and the drug was withdrawn. Conclusions.-Providing the dosage for each individual is adequate, preventing CH with verapamil is highly effective, taken three (occasionally with higher doses, four) times a day. In the majority (94%) with episodic CH steady dose increase under supervision, totally suppressed attacks. However in the chronic variety only 55% were completely relieved, 69% men, but only 20% women. In both groups, for those with partial attack suppression, additional prophylactic drugs or acute treatment was necessary. (Headache 2004;44:1013-1018).
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See the PDF file, below.

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So you're experiencing shadows now, not full blown attacks.

IMO that is something to thank your lucky stars for, then proceed directly to the shadow squashing remedies found here, then start building your heavy artillery CH beast battling arsenal, again based on info here, so you'll be ready for an immediate response all out counter attack if the full blown hits return.

As Bob says, your Verapamil dosage may be too low. Something to discuss with your doc. Most here take 480mg during their cycle (the fast-acting formula is considered more effective than the SR one).

Red Bull is a great shadow killer for me. Maybe worth a try.