Status migrainosus

[mle134]

I have been diagnosed with status migrainosus with cluster headache.  I am female, 49 yo, and have had migraines from 17 until I had medical menopause at 45.  I was migraine free for a couple of years, but then this headache hit in December of last year.

My own neurologist doesn't know how to treat this and admits this is out of her area of expertise.  I was diagnosed while inpatient at a major medical center in a large town in this state, but they would not follow me afterwards because they felt I was too "acute" for the distance they are away. MRI & CT scans are normal...

I have tried topamax, verapamil, lisonopril, inderal, depacon and dhe infusions, and lithium.  None has been able to work for me.  I do get some partial relief from Relpax (taken 1x per week max per md instruction) and indomethacin and steroids helped when I was on them.  Now my neurologist will not represribe the indomethacin because she feels it is too dangerous to take daily for months as I have, but she has nothing to replace it.  I have tried pain management (which said they could only treat if they could inject - I have tried both an occipital nerve block, and trigger point injections with no result) and don't know what to do next...  I also get partial release from toradol in the ER, but narcotics don't seem to do anything but put me to sleep to wake up where I went to sleep at.  The pain at best goes down a couple of notches on the pain scale

My question is would it benefit me to seek help at a larger nationwide type facility such as the Cleveland Clinic?  After my disapppointing followup situation at the large teaching hospital I am kinda gunshy....but the pain is already increasing rapidly as this is my first day without indomethacin.

Thanks for your advice...

[Lama Chahine, MD]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

Without the ability to take a history and examine you, I can not comment on the diagnoses that you have received nor on what treatment would most benefit you. However, I will go over some possible treatment options and some possible other diagnoses.

As you know, the treatment for headaches can be divided into prophylactic and acute. This list is by no means all inclusive. The commonly used prophylactic medications include beta-blockers (such as propranolol), calcium channel blockers (such as verapamil), anti-epileptics which also have anti-headache properties including valproic acid (depakote), topamax, antidepressants such as elavil, and others. The acute headache treatments include as non-steroidals like advil, and triptans like relpax. Indomethacin is useful for particular kind of headaches such as "hemi-crania continua". For cluster headaches, oxygen therapy and calcium channel blockers are useful. Steroids have a role in the treatment of headaches but this is only in specific cases. Infusion therapy, including steroids, DHE, valproic acid, and others can be administered in well-equiped and experienced centers and can provide benefit to patients.

It sounds like you have been treated with several medications, but there are other options. However, when someone has used several medications for a period of time, they can develop a new type of headache called medication-rebound or medication-overuse headache, whereby the frequent doses of medication start perpetuating your headache instead of treating it. There is therapy for this type of headache: medications should not all be stopped abruptly but rather one should slowly be replaced by another for a brief period by an experienced specialist.

While most neurologists are able to manage uncomplicated headache disorders, sometimes a headache specialist would be helpful to provide input to the neurologist when the case is more complicated. You may benefit evaluation at a specialized headache center; if it is too far for you to comute frequently, perhaps recommendations could be made to your primary neurologist.

Thank you for the opportunity to answer your questions, I hope you find the information I have provided useful, good luck.

[sheba968]

I was wondering if you have ever consulted a Rheumatologist.  It may have already been ruled out, but sometimes people with Antiphospholipid syndrome can suffer from severe migraines.  The reason you caught my eye is because the one medication that seems to give you any relief is a blood thinner, and the treatment for those with APS is blood thinners.  It may be worth looking into if you have never been tested.  A blood  test is all that is needed to diagnose APS.  I Hope you find some relief soon, I know how lousy it is to deal with migraines.

[mle134]

Sheba968:  I thank you for your comment.  No I have not been tested for this that I know of, nor have I seen a Rheumatologist.  

I will mention this to my primary care physician and have him look at my records from the large teaching hospital to make sure they did not test for this - they ran so many tests I'm not sure what they tested for!!!

This headache is so unlike the migraines I had for almost 30 years.  Those had familiar triggers and the pain always ran the same path, so I knew what to expect and how long.  I at least knew there would be an end to the pain even when it was at its worst - now all I know is if the pain gets out of hand (as it did yesterday) there is the inevitable trip to the brightly lit migraine-sufferer torture chamber that is a modern ER waiting room...

[mle134]

After all the medications I have been on in a short period of time, I could certainly understand medication overuse!!!  That was what the teaching hospital thought I had at first, but decided against it, but that doesn't mean that by now months later I haven't got it!

Since I haven't been taking indomethacin, I've been trying to tough out the headache but without a lot of success.  I do find that there is more lasting benefit from the toradol injection I had last weekend, so maybe the indomethacin calmed things down a little!

Thank you for your detailed answer. I will speak with my neurologist to see if she wants to try yet another approach to the issue.  If not, I may ask for a referral....I had not thought about the remote specialists coordinating with my local specialist - that is a reasurring idea...

[mle134]

Dr. Chahine:

Just another thank you for your informative answer and the encouragement to seek more specialized care.

After many days of struggling with varying levels of pain, and some ER visits and weekly injections of toradol, I was able to get an appointment with a headache specialist at a major research hospital in a neighboring state.  After reviewing my case, and all the different treatments tried and failed and the few that tried and succeeded, a diagnosis of hemicrania continua (one of the diagnosis you suggested above) was made, and the indomethacin was reinstated with increased dosage, as it was felt I was actually undermedicated instead of overmedicated.

I hope this will do the trick!!  Thanks again for the advice when I wasn't sure which way to turn...