I was diagnosed last week with cluster headaches. Although some of my symptoms don't seem right for cluster headaches, I was given Verampamil 80mg tab 3 times a day, causing BP crashes and spikes. After three days I was dropped down to 1 80mg pill a day.

I, of course, went googling. But can't seem to find a page that explains certian things.

Like: What causes the eyelid swelling/drooping? What causes the stuffy sinuses? What causes the almost petechiae looking spots in the bags under my eyes, that are now there seemingly permanently.  :-/

Maybe someone has a link they can direct me to? It's very confusing.  :o

It will help us to direct you to good sources of assistance if you will tell us where you live (city & state, if U.S. or country). At the Home page: Help button-->Edit & Profile --> Location. (This will add your location, just below your name, every time you post a message.
====================================
The hypothalamus is, under curent thinking, the source of Cluster. It also send nerver branches to a numberr of locations in our head which appears to be the source of facial changes, tearing, jaw/tooth pain as well as the source of Cluster. In thesm selves, these are not reactions of concern unless dentists start pulling teeth on the misblief that a bad tooth is the sousrce of Cluster.

Of more important interests re. your Cluster:

1. Who diagnosed you? A doc with experience with complex headache disorders? Musllh confustion, misdirection, wrong Dx from docs who know littsle about Cluster.
2. There are options to Verap. Print the PDF file, below, to share with you doc re. alternatives.

Don't start playing around with various treatments which you will be offeer here while, at the same time, following your doc's Rx. Multiple treatments only confuse.

Print the following to share with your doc as a viable option to Verap.
----------
Headache 2001 Sep;41(8):813-6 

Olanzapine as an Abortive Agent for Cluster Headache.


Rozen TD.
Department of Neurology, Jefferson Headache Center/Thomas Jefferson University Hospital, Philadelphia, Pa.

OBJECTIVE: To evaluate olanzapine as a cluster headache abortive agent in an open-label trial. BACKGROUND: Cluster headache is the most painful headache syndrome known. There are very few recognized abortive therapies for cluster headache and fewer for patients who have contraindications to vasoconstrictive drugs. METHODS: Olanzapine was given as an abortive agent to five patients with cluster headache in an open-label trial. THE INITIAL OLANZAPINE DOSE WAS 5 MG, AND THE DOSE WAS INCREASED TO 10 MG IF THERE WAS NO PAIN RELIEF. THE DOSAGE WAS DECREASED TO 2.5 MG IF THE 5-MG DOSE WAS EFFECTIVE BUT CAUSED ADVERSE EFFECTS. To be included in the study, each patient had to treat at least two attacks with either an effective dose or the highest tolerated dose. RESULTS: Five patients completed the investigation (four men, one woman; four with chronic cluster, one with episodic cluster). Olanzapine reduced cluster pain by at least 80% in four of five patients, and TWO PATIENTS BECAME HEADACHE-FREE AFTER TAKING THE DRUG. Olanzapine typically alleviated pain within 20 minutes after oral dosing and treatment response was consistent across multiple treated attacks. The only adverse event was sleepiness. CONCLUSIONS: Olanzapine appears to be a good abortive agent for cluster headache. IT ALLEVIATES PAIN QUICKLY AND HAS A CONSISTENT RESPONSE ACROSS MULTIPLE TREATED ATTACKS. IT APPEARS TO WORK IN BOTH EPISODIC AND CHRONIC CLUSTER HEADACHE.

PMID 11576207 PubMed

--------------------------------------------------------------------------------

Olanzapine has a brand name of "Zyprexa" and is a antipsychotic. Don't be put off by this primary usage. Several of the drugs used to treat CH are cross over applications, that is, drugs approved by the FDA for one purpose which are found to be effective with unrelated conditions--BJ.
=====

If your present doc doesn't have a solid background in treating heatache:


LOCATING HEADACHE SPECIALIST

1. 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.

2.  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.

3. 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.

4. 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.

5. 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.
=====================================================================
WHY A HEADACHE SPECIALIST IS RECOMMENDED


Headache. 2012 Jan;52(1):99-113.
Cluster headache in the United States of America: demographics, clinical characteristics, triggers, suicidality, and personal burden.
Rozen TD, Fishman RS.

THERE REMAINS A SIGNIFICANT DIAGNOSTIC DELAY FOR CLUSTER HEADACHE PATIENTS ON AVERAGE 5+ YEARS WITH ONLY 21% RECEIVING A CORRECT DIAGNOSIS AT TIME OF INITIAL PRESENTATION.
===================================

Do your best to stay cool! With new cases of Cluster it often takes time to get a solid Dx, trials of variuous treatments, etc. before thinkgs begin to settle down. We've all been thru this and assure you that the odds are very high that you'll find effective treatment.

---

Hey KMK,

Welcome to CH.com.  You've come to the right place.  We know what you're going through and the good news is it doesn't need to be that way...

Bob has already provided you with some important information.  I've sent you a PM with additional information.  Please feel free to ask questions as that's the only way to learn about CH and its treatments.

Take care and please keep us posted.

V/R, Batch

Thank you for the info guys. I'm having a bit of an issue finding the right buttons to hit here to post and such...lol, so if you see something posted totally back-a$$wards, that's why. I'm working on it lol.  I was just diagnosed by a new doc at the health clinic (free clinic) I have no ins., no job, can't work - so the health clinic is my only hope. :( Sadly. But this doc listens. I can take these articles you guys posted, print them off and he wold be happy to read them and discuss. I got lucky with this doc. My issues for the last few days have been nasal inflammation more severe than it has been. This all started with a surgical procedure September 30th of this year. My face swelled up, my eyes were so swelled I could barely open them. I would post pictures of the hideousness, but I don't want to freak anyone out. LOL. Just take my word for it, it was horrible. The last few days I have had insane nasal cavity/sinus swelling. No infection. Ear drum bulge on and off. Specific points in my head hurt. 4 points to be exact. Two in front, two in back near base of skull. The nasal swelling has caused oozing of blood from the tissues just inside nostril. No, I'm not picking it...that would be too easy of an explanation. My nose never runs out the nostril. It runs down the back of my throat. Tasting like blood, since night before last. When this started it was a serious stab in the head, that I'm sure you all know, just above the left ear and forward a little. Then the ear started it's stabby pain. Then the nasal cavity started throbbing and then I got a bloody nose. Just sitting there doing nothing. I called doc...but, yeah...it's the free clinic and no one called me back. Not sure if this is just 'the way it is with CH' or if I need to be the squeaky wheel at he office to be seen again.  :-/
Does any of that sound normal for a cluster headache? Doc printed off a few pages about cluster headaches at the office last week, but honestly I can't find these 'symptoms' on any of them. Maybe this is not what it is? My luck it will be some weird, obscure, bizarre thing that no one understands. Seems to be the road I'm on.

The other thing is I have genetic mutations of the P450 family. Aaaand some weird chemical sensitivities. Geneticist has no explanation for the sensitivities. I also have Fibro, IBS, GERD, esophageal motility disorder, gastroparisis, abdominal aorta blockage at 70%+. I go in for a CT this week sometime checking for mesenteric ischemia. So maybe this could have something to do with that? IDK. I have issue with fainting (mostly when I eat), BP crashes and spikes, high BP that cannot be controlled by meds. (I smoke weed to control it.) ER reactions to most meds as well. Usually insane pain in some random spot, seemingly having nothing to do with anything. I assume it is some nerve disorder. They are thinking lack of blood flow to the lower half of my body because of the blockage. And just a note, this began back on July 11, 2011 when I was given an injection in the spine at T4/T5/T6 for bulging disc. That injection ruined my health. I had neurological issues after that - to this day. Tremors, the fainting thing...and so on and so forth. Honestly, I guess the most distressing thing right now is the constant flow of snot? and blood down the back of my throat.

KMK,

Given the conditions you've listed fall into the autoimmune disorder category and are likely caused by a vitamin D3 deficiency, you need to see your doctor and ask for the 25(OH)D lab test ASAP. 

The normal reference range for serum 25(OH)D is 30 to 100 ng/mL...  Were I a betting person, I'd wager your 25(OH)D serum concentration is below 20 ng/mL.

If your 25(OH)D serum concentration is that low, you'll need to start vitamin D3 repletion therapy.  Starting the anti-inflammatory regimen and following the loading dose instructions will build your serum 25(OH)D as fast as possible...

Be sure to discuss all this with your doctor when you go in for the CT and 25(OH)D lab test.

Take care and please keep us posted.

V/R, Batch