Hello everyone,

  I have an interesting case (I think, but hope not) and hope someone out there can help me understand it.  To date my neurologist and GP have no idea what is going on.  I will try to keep this as short as possible so you do not have to read too much.

6 weeks ago on February 18th, I experienced the most god awful headache.  It sent pain down my neck, in my head, my face, you name it.  Since that very moment I have had a headache at ALL times that hovers between 2-4 on the Kip scale.  I cannot escape it and it is driving me insane, it has taken over my thought and any distraction from it is like a godsend. 

Coupled with the constant headache, I get shadows frequently (little rushes of 4-5 on the kip scale that last 1 second to 1 minute) and I get what I call spikes at normal intervals in the day and night.  The spikes register a 6-8 on the kip scale and last 30 minutes to 2 hours.  They were coming every day at 11am, 8pm, and 330 am (waking me and keeping me awake).

I went to the doctor and eventually made it to a neurologist.  His current diagnosis is a migraine/cluster mix.  I have been to ER twice, and have been given handfuls of medication (midrin, diclofen, hydrocodone, sumatriptan, verapamil, lithium, diladid, and some other stuff).  I now take verapamil 80mg 3 times a day and 150mg of Lithium at night.

Since taking the verapamil my spikes have reduced to a 5 on the kip scale, but they are still there and I feel I am not making any headwind on resolving this (after reading the post, I know I may never resolve it). 

I have read many post on this site and obviously would not be writing unless I needed some help.  I am a very strong person, but this is beating me down and it is very depressing, as I am sure you all know.

Except for the very first night, I have not had the level 10 kip scale.  This makes me wonder if what I have is cluster headaches or not.  Are there levels of it, phases of it, do I have a combo, am I in the honeymoon phase and getting ready for major attacks?  These are question I ask myself repeatedly. 

The constant pain is predominantly in the right side right behind the temple and above the ear.  I call it head pain rather a headache.  It does move around some to the top of my head and sometimes to the left, but mostly remains on the right. 

To further complicate this I had an MRI that revealed I have a birth defect.  I am missing my left internal carotid artery.  Blood moves through my brain "sluggishly" in the neurologist words.  I do not know how this affects headaches and have made 31 years so far with no issues until now. 

So, in summary:  I have a constant headache at all times 2-4, I get spikes that were 6-8 but are now 5's since taking verapamil.  I also am missing a carotid artery and have sluggish blood flow through my brain.

The artery piece aside, has anyone heard of the type of headaches I am experiencing?  I know this site is not for diagnosis, I just hope someone can point me in the right direction or inform me that I am in the right place.

I think the folks on this site are incredible, whether or not I am a clusterhead, I am suffering and am looking for guidance.

I appreciate any help this community can offer.

Thanks,
Ryan

If you could see the manual which describes all of the headache types you would appreciate why seeing a headache specialist is essential. (Too many neurologists receive little formal training in headache and so often can do little for us.)
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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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or On-line screen to find a physician.

5. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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. Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or 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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You could have an early emerging Cluster but that's only a way of saying: often Cluster headache emerges with wandering pain sites, types/degree of pain, duration, etc., taking months to settle into a recognizable picture. From what you have said, I'd be inclinded to say: too soon to make a call and so why getting with a specialist is so important.

If you have to wait some time to get an appointment, might print out the following for your present docs. The present dose of Verapamil is quite low and they may be willing to do some trial increases. (The following protocol is well established in the U.S.)
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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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SLOW-RELEASE VERAPAMIL

Dr. Sheftell applauded the protocol for verapamil used by Dr. Goadsby and colleagues, which entailed use of short-acting verapamil in increments of 80 mg. “This method was suggested by Lee Kudrow, MD, 20 years ago as an alternative to slow-release verapamil,” Dr. Sheftell noted.

“I would agree with using short-acting verapamil, rather than the sustained-release formulation, in cluster headache,” he said. “I prefer the short-acting formulation with regard to ability to titrate more accurately and safely. My clinical experience anecdotally demonstrates improved responses when patients are switched from sustained-release verapamil to short-acting verapamil.”

Dr. Goadsby agreed that his clinical experience was similar. “There are no well-controlled, placebo-controlled, dose-ranging studies to direct treatment. This is one of those areas where clinicians who treat cluster headache have to combine what modicum of evidence is available with their own clinical experience,” Dr. Sheftell commented.

Hey Ryan!!

Welcome to the board...sorry you needed to find us though!!

You didn't mention O2 in your post....if you don't already have it get the info on the O2 on the left and hit your docs up for a script ASAP....it's been a lifesaver for me and many others on the board!!

Dallas Denny

I am missing my left internal carotid artery.  For those that may not know (I sure didn’t until last week) your carotid arteries in your neck split around the jaw line.  At that point you have an 2 external carotid arteries that feed the scalp and muscles.  You also get 2 internal carotid arteries (ICA's) that straight shot to the Circle of Willis.  The Circle of Willis is an artery (or group of arteries) that form a circle in the center of your brain.  The ICA is about 3/5's or 2/3's of the blood flow of the carotid artery. 

Apparently blood moves sluggish through my brain.  Now I know why!  I get another MRI next Friday with die, so we can see how it is that blood flows to my brain. 

Once I can understand the artery issue, I can then get more aggressive on medications and treatments for these head pains (assuming the two topics are unrelated).  I hear CH’s are vascular, I do wonder if the two issues play off each other.  My biggest fear is that my funky blood flow system is compromised now and starting to give me issues (ie the constant headache).  Perhaps the Marine Corps and backpacking were not the best thing for a 1 artery set-up.

Apparently missing an ICA is extremely rare and even rarer if born without.  Most cases are from severe trauma.

Maybe more than what you asked for, but it feels good to talk about without hearing....."can't they just replace your artery (not realizing I'd have to have my cranium cracked open) and that should also fix your migraine, which I am sure you got because your eyes need a check up, you play that video game too long, your drank too much, and spring started early"

-Ryan

Hi Ryan,

Aside from the fact that you are dealing with an artery anomaly that will require a particularly specialised and cautious approach to diagnosis and treatment, CH can and generally does take years to crystalize into its trademark symptoms.

While some of your symptoms are reminiscent of CH (while others are not), they could be any of a dozen and then some headache conditions other than CH at this point.

Take your MRI results and a very detailed diary of your symptoms, triggers and attacks and look for a true headache specialist from the reference list that Bob posted.