Hemicrania Continua

[Captain Deb]

OK, Y'al
l--I just got back from seeing my neurologist today.  He's finally--after three years given a name (maybe) to these flippin' headaches.   "Hemicrania Continua"--means just what it says--one side of your head hurts all the time.  Says they probably are part the migraines I get fairly frequently.
 I've been having to control the daily ones with fairly regular use of hydrocodone, especially since I've increased my activity level. He's trying me on Indocin 3x daily for a while as a diagnostic tool--apparently these suckers are totally responsive to Indomethacin--at least as long as my stomach holds out!  I had some nasty tummy problems last year which I have been controlling with Aciphex and never taking any meds on an empty stomach.

Anybody elso been diagnosed with this?  I think it's the last resort label they give to folks who have non-stop headaches with no apparant physical reason (like a CSF leak or hydrocephalus)

I looked it up in my headache book and it says they are related to migraines.They kick in real bad with exertion--like right after my work-out I usually feel like there's an elephant sitting on my head. I gotta go right home and lay down afterward.

I have a good deal of the symptoms which I have attributed to facial nerve surgery--runny nose, eye tearing and redness, sand-in-the-eye-feeling, headaches that worsen with exertion. Severe episodes mimic migraines for symptoms.

Well, lets hope this stuff works! I'd like to get off the narcotics for good! I want to go hiking!  I want better balance! I want to windsurf again!

Laz--have you talked to your doc about this one? You and me be in the same boat and I ain't talkin' about the PBW!

Capt Deb

[HeadCase2]

Capt,
  If I remember correctly, indomethicine is a powerful anti-inflamatory.  I was prescribed with it once, for lower back problems, but couldn't tolerate it.  It gave me odd nightmares with heart palpatations.
  I hope you're able to tolerate it, and that it helps.  I know headaches can be debilitating.
Regards,
 Rob

[Gennysmom]

Ah, Vicodin, my friend.  Never leave home without it.  I swear that stuff could cure anything.  But not something to take regularly. 

Is there a causal relationship with the AN and surgery?  Or could this have been a preexisting condition? 

My aunt has been plagued with debilitating headaches for most of her adult life.  She once went on a 2+ week migraine bender and was within inches of commiting suicide.  I commend all of you who deal with that, I have first hand experience with how horrible it is...she's been on another one and we were worried that she might not make it on our trip. 

[Captain Deb]

I had a few bad headaches pre-diagnosis, but not a non-stop headache.  When I sought help for my "stuffy ear" I said , "by the way, I think I'm having migraines" which lead to the MRI.
Capt Deb

[Road Trip Dale]

Deb, lets hope that since they have a name for it, albeit a "last resort" name, that they can follow some regimen and get you back functioning properly again.  I feel so bad sometimes when I see the struggle you and others are having, and I'm already feeling so good.  Of course, being a manly man, I just want to fix everything, unfortunately I don't have a medical degree.

By the way...I finished two pastel paintings since I talked with you and they are fairly well aligned:-)  Nothing leaning that I didn't want to lean.  Now if only I was a real artist like you<grin>

Road Trip D

[Janet]

Hemicrania continua is a very specific type of headache rather than a general catch all category. To diagnosis it you give an Indomethacin trial. It works on this type of headache but not on others. I have taken it for the last year and it really works. Google, "Goadsby and hemicrania continua" and you should find some research papers.  I have previously posted some info on hemicrania continua because that is what my neurologist told me I had and she was right about the Indomethacin.  I wondered why no one else on this site seemed to be familiar with it since so many were seeking treatment for headaches. Indomethacin can be hard on you stomach but I take it with food and I am not bothered by it. It isn't addictive and it doesn't zap your energy. I am also in a Botox study where I get injections in the muscles that tighten up. (neck, shoulders, back and sides of head).  The goal is to reduce the need for the Indomethacin. I am down to 2 Indomethacin a day. (25mgs each).   

[Raydean]

Thanks Deb and Janet

I've been following this thread in hopes of discovering something new for my daughter who has headaches and hasn't responed to the topamax and all of the others drugs. I'm forwarding the name of the drug to her.  It'd be so great if it work for her.

Thanks for sharing!!!
raydean

[Captain Deb]

Hemicrania continua is a very specific type of headache rather than a general catch all category. To diagnosis it you give an Indomethacin trial. It works on this type of headache but not on others. I have taken it for the last year and it really works. Google, "Goadsby and hemicrania continua" and you should find some research papers.  I have previously posted some info on hemicrania continua because that is what my neurologist told me I had and she was right about the Indomethacin.  I wondered why no one else on this site seemed to be familiar with it since so many were seeking treatment for headaches. Indomethacin can be hard on you stomach but I take it with food and I am not bothered by it. It isn't addictive and it doesn't zap your energy. I am also in a Botox study where I get injections in the muscles that tighten up. (neck, shoulders, back and sides of head).  The goal is to reduce the need for the Indomethacin. I am down to 2 Indomethacin a day. (25mgs each). 

 

Janet--were you diagnosed with this pre- or post- treatment?

My doc has started me on the Indomethacin trial--150 mg a day, and I'm trying hard to protect my stomach.  I sure hope this works!  I've been researching a bit and I seem to have a lot of the symptoms--exertion headaches and the runny nose thing in particular.  Wonder why he waited for 3 years before giving me this trial? Thanks for the link!

Capt Deb

[Janet]

Capt Deb,

I had occasional migraine-like headaches pre-op behind my eye but nothing compared to the post-op headaches. Two weeks after surgery, I woke up in the middle of the night with severe sharp pain in the back of my head.  Since then, I would get dull pain behind my eye with involuntary neck tension and periodic severe sharp pain in the back of my head, always on one side. This was a daily event. Now, the Indomethacin stops the sharp pain and the Botox stops the muscle tension and dull headache. If I don't take the Indomethacin, I'll start having sharp pains within 12 hours.

[Janet]

Capt Deb,

I guess I didn't really answer your question when as to when I was diagnosed.  I was diagnosised one year after my AN surgery. I finally went to a neurologist associated with a large medical center who gave me a diagnosis within 5 minutes.  I had seen other doctors, including a general neurologist who were of no help.

[Captain Deb]

OMG me, too! two weeks post op! Dr. Friedman said I'd had a migraine.  I also had the same pre-op symptoms! I can't believe I've been going through this crap for 3 1/2 years--I feel really hopeful!  I just read (kind of) that Goadsby article and found myself all over it--particularly the agitation I go through during my "migraines" and the runny nose and eye teringI get in the morning after I eat or brush my teeth.  If there's a way I can get back to being my active athletic self (windsurf, hike, sail, kayak)--well, I'm starting to BAWL!!!!

Capt Deb

[Captain Deb]

Janet,
How long did it take for the Indomethacine to kick in? I'm sitting here with a mild tummy ache--but since this is the only way to diagnose these things I'm willing to put up with it--gonna call my gastroenterwatzis today and see what he can have me do to tolerate the next 2 weeks.  Already taking aciphex, but my gut is already 1/2 shot from 3 1/2 years of pain meds!
I'd love to talk with you one on one--message me and we'll exchange phone numbers if that's OK.
Capt Deb

[Janet]

Capt Deb,

If I remember correctly, it only took a couple of days before I noticed it was working. I started with a total of 150mg a day.  I took 25mg 3 times during the day (with meals) and 75mg extended release at betime. I sent you my phone # via e-mail through the site. I'll resend it to you directly to your email.

[Captain Deb]

I'm so bloody excited about there being light at the end of the tunnel for me I can hardly stand it.  It's weird to think that I really want to have this disease! I'm sitting here with a yucky-feeling tummy, and a little head tightness, but my nose didn't run this morning for QUITE as long as it usually does! YAHOO!
Capt Deb

[Raydean]

Flurbiprofen
In 2001, we heard from a couple of patients troubled by severe and chronic headaches post-surgery. They both came across a medication that helped them very much. The medicine is called Flurbiprofen. One patient reports that the drug was originally an arthritis medication. it's an older drug.
I'n not a doctor but this drug may help also.

Deb  I sure hope it works for you and again thank you for sharing

Raydean