Hey everybody!  These darn headaches have been creeping up for the last eight years now.  First it was a twice-a-year sinus headache...then all-the-time migraines...now my neuro says 'migraines with chronic cluster symptoms'.  I may find a treatment that works, but never for long.  I have run the gamut of migraine meds, oxygen helped for a couple weeks but now does nothing.  I've been taking verapimil for 3 weeks and it helps, but the headache keeps returning.  Currently on my fourth round of steroids in two months, but the headache is definitely there.  I guess that's why it's called chronic.  There have been exactly TWO pain free days in the last nine weeks....

Curious if anyone else here has multiple chronic illnesses, or other neuro problems also.  I've had partial seizures and a low thyroid since childhood, but the headaches are a fairly new thing.  Related?  Who knows... :-/

seems like a nice, rowdy talkative bunch.  Looking forward to spending time here....

If you do not have a headache specialist, I hope you have the option of seeking one. So many folks here have gone for years before finding someone with training/experience dealing with complex headache disorders.

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.  Call 1-800-643-5552; 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.

I'll admit a bit of hesitancy of going to a specialist when my headaches are not my only problem.  They seem to be connected to my seizures, so a headache specialist seems too...specialized, I need a brain doctor, right?

I actually do really like my neuro, in that he listens and answers my questions (!) believes that I am in pain and not making stuff up (that's new), and keeps trying new things.

I like my primary care doc but I would not have allowed him to replace my knee last year. Obviously, we need a range of special skills to help us and simply being a nice person who listens, as critical as that is, does no assure he has the skills you need.

Most neurologists do not have the medical training to handle complex headache disorders. This has become, as is true in all of medicine, an increasing issue as the range, depth, complexity of medical knowledge has made it impossible for anyone to meet all or our needs. It's entirely reasonable to have several medical disciplines coordinating the care of one person's problems. IF your doc has good skills with headache then no issue. I'm just suggesting that you not assume this is the case.

In the end, it's skill and not good intentions which will rule the day.

I can understand why you might not want to see a headache specialist.  Even though your neuro is sympathetic and does listen to you, he may not be as up on treatment options as he needs to be. 

Quite frankly, him saying, "'migraines with chronic cluster symptoms" tells me that he may not be as knowledgeable about cluster headaches as he needs to be.  There are people who have migraines, people who have clusters and people who have both, but I've never heard of *migraines with chronic cluster symptoms*.

Btw, my husband is the clusterhead and I'm the supporter who has migraines  ;D.

Several years ago we had recurring fusses over this question. Just a memory...........

Curr Pain Headache Rep. 2007 Apr;11(2):154-7. 


Cluster-migraine: does it exist?

Applebee AM, Shapiro RE.

Given C219B, Department of Neurology, University of Vermont College of Medicine, 89 Beaumont Avenue, Burlington, VT 05405, USA. robert.shapiro@uvm.edu.

The nosological boundaries between cluster headache and migraine are sometimes ill-defined. Although the two disorders are distinct clinical entities, patients sometimes present with clinical scenarios having characteristics of both headache types, but either do not fully meet International Classification of Headache Disorders, Second Edition diagnostic criteria for either disorder or have sufficient symptoms and signs to allow both diagnoses to be present. These occasions provide diagnostic challenges and include what is variously described as migraine-cluster, cyclical migraine, clustering episodes of migraine, cluster with aura, or atypical cluster without autonomic symptoms or severe pain. Patients with symptoms overlapping cluster headache and migraine likely reflect the inherent clinical variability in each of these two disorders, rather than distinct diagnostic entities in their own right.

PMID: 17367596

I am new here and having a hard time getting my MD to refer me to a neurologist or pain management specialist for these darned CH. Without a referral I can not see a specialist bc my insurance will not pay for the appointment. Any recommendations for physicians resistant to referring.

kellybell73 wrote on Dec 17^th, 2009 at 5:13pm:

........................Any recommendations for physicians resistant to referring.

Show him/her first hand what a full blown attack looks like.

All of my doctors over the years have seen me in the grips of CH agony and their attitude changed dramatically after seeing what I go through. I'm a big ugly guy, so it adds contrast to see me in such a weak and helpless condition.

Marc

My headaches definitely don't fall into the standard CH definition.  There are characteristics - location, nasal/eye symptoms, duration.  But these aren't attacks with periods of remission, this is a constant pain behind the eye for almost 3 months now.  And while not pleasant, it is rarely above a 5 thank goodness, it just NEVER ENDS.

They don't fall into the migraine classification either - no aura, nausea, etc.  Occasional light / sound sensitivity but normally moving or keeping myself occupied is better than locking myself in a dark room.  Definitely a blend of symptoms.  Can migraines develop into cluster headaches over time?  It seems like the headaches I started having 10 years ago have merged from one set of symptoms to another...

Ephyk,

I don't envy you. I am lucky (sic!) to be fairly vanilla clusterhead.

The word "seizure" is bound to light up red lights on any neurologist's panel like a Christmas tree. Couple that with atypical symptoms and you have a real enigma. It is good that you are comfortable with your neuro and that he is actually listening to you. In cases like yours it really never hurts to get a second opinion. You don't need to fire your current doc. What you DO need is to be examined by someone who is specialized in headaches. As I said, the very mention of seizures and low thyroid levels will alert ANY neurologist. I don't think that a headache specialist will disregard it.