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05/30/2007 04:02 PM

Hemicrania Continua and Indomethicin

elisemarcel
elisemarcelPosts: 26
New Member

I feel kind of silly asking this question, since I know we've all gone through so many tests, medications, etc. But has everyone here taken the indomethicin 'test' for hemicrania continua? While I have only read the clinical characteristics in various studies and gotten a brief description from my doctor, it basically seems as if hemicrania continua and NDPH look a lot alike, and the way to identify the former is to take indomethicin, which will rapidly reduce your headache to basically nothing if you have H.C.

Have people talked about this on the forum before?

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05/31/2007 05:38 PM
andwoo
Posts: 101
Member

I don't think it's been talked about. I haven't taken indomethicin, but the distinguishing factor between the two types of headaches are that HC is only on one side of the head. Since my headaches started out bilateral, I assume the doctors did not consider me to be a candidate for it. Also, it works quick, if it's going to work, so I suppose it's worth a try. You won't have to wait a month or two, more like a week or so, at least from what I've read.

05/31/2007 06:02 PM
joanna524
joanna524  
Posts: 79
Member

Hey andrew Smile I saw (long ago in my "headache adventures"Wink a TMJ/myofacial pain specialist, because my dentist believed that I had TMJ and that it was the cause of my headaches. This TMJ/myofacial pain specialist believed that I had an Indomethacin-responsive headache -- I believe this was probably because my headache had started out just on one side of my head, which is along the lines of what you are talking about. Of course, my headache was then changing to be "global" as I call it, my whole head... the Indocin didn't help me, needless to say. I can't even remember if it helped even a little bit, it was so long ago.

Who knows, it could end up helping you! Smile


06/08/2007 10:44 AM
Aly
Posts: 9
Member

I am currently taking Indomethacin, as a way to rule out HC. I also had a MRI to rule out blood clots, and as long as that comes back negative, my doctor will begin treatment for NDPH.

It has not helped my headaches, although it has helped ease my joint pain a little. In fact, the second day of taking Indomethicin, I had the worst headache of my life and had to be taken to the ER. My doctor insisted that I be on it for two weeks though, so for the past week I've taken half the dosage, and today I go back onto the full dosage. Unless some drastic change happens, in a week HC will be ruled out. My doctor says this is standard procedure for him.

I don't know if any of this helps - hope it does!


07/09/2009 11:58 AM
connybunn
Posts: 29
Member

Hi Everyone. I have been diagnosed with H.C. Although the very good response to Indomethicin was a factor, HC also has a few other tell tale signs. One is "pink eye". I can't tell you how many times I went to my GP and was told it was pink eye. It is actually a symptom of HC. It is often on the opposite side that the headache is on.

Other symptoms include flu or allergy type symptoms...scratchy, watery eyes, nasal congestion, sore throat...but you don't have a cold, or flu...no temperature, coughing, sneezing, body pain...

HC is a constant, often debilitating pain. I have had a few weeks were the pain was managable, but for the most part I'm close to tears most of the time.

Unfortunately, although Indomethicin works for HC, it does not get rid of the headaches completely (for me) and during a bad spell, it only works enough to prevent me from killing myself. (sorry for that but it is very true).

I'm new to the site because I need to learn how to cope with this headache that I have had for 2 years. During my bad spells which last about 3 to 5 weeks...I'm currently on week 4, I need your help to tell me what I can do, what worked for you.

I know I don't have the same disorder as you, but I'm sure the pain and frustration is the same.

Any help you can provide me will be so greatly appreciated.

thanks!

Conny


07/10/2009 08:02 AM
WendyLou
WendyLou  
Posts: 380
Member

Hi Conny,

The HC diagnosis has been mentioned to me too. Do they think you have that b/c it's a one-sided headache (vs bilateral) and you have the eye symptoms? My headache is almost always on the right (although in the last year sometimes my left will also hurt) and my right pupil is also constricted sometimes. For this reason they've mentioned HC but also NDPH. My eye does not water or get exteremely red though. I have the Indomethicin but have not gone through with the trial b/c ond day I'll feel really bad but then the next day is better so I stop. My pain can also be present one minute and then gone the next so I tend to not be good about taking the meds. I probably really should commit to trying it though b/c if it would take the daily headache away it would be a blessing.

I'm sorry you're in so much pain but you're right, whether it's HC or NDPH this forum has many people who can provide you insight and advice and support.

Welcome and I look forward to chatting with you further.

Take Care


07/10/2009 08:40 AM
connybunn
Posts: 29
Member

I was told that HC does not mean the pain is exclusively on one side but 90 to 95 % of the time is is. Mine is weird...it is a band across the top of my head, in line with my ears...actually about an inch back from that line. If feels like there is a brick on the top of my head. The left side is the dominant side.

Indo doesn't always work for me either...I think I may be building up a tolerance for the drug as the longer I take it the less it works...I have to get an incease in the dose every 3 to 4 months. the problem is that I'm at the max now so I can't take anymore. I take Tylenol 3 when my headaches are a 10 but have to be careful of the rebound affect. My headaches have been at 7 to 10 for the last 3.5 weeks. I'm at my wits end! Just quit my job cause I can't do it with these headaches anymore. I'm hoping to take some time off to try to get the headaches under control before I start a new job.

Sorry for the compaints...just in a lot of pain today (9 to 10!).

Thanks for being there for me! It makes me feel better to know I'm not alone...what do they say? Misery loves company!Sad


07/10/2009 10:29 AM
MaryR
MaryR  
Posts: 4121
Group Leader

Sorry to hear your pain is so bad today Connybunn. It makes everything really hard to deal with for me when it is like that.

07/10/2009 06:39 PM
Enbee
EnbeePosts: 1556
Senior Member

Hi Connybun, sorry you are having a crap day! I'm currently having a run of over 2 weeks of 8/10+ pain, and yes it extra sucks when it is like that. Before I had to stop working I had 8 weeks straight of at least 9/10 pain, 24/7. It makes it virtually impossible to work, or be functional in any capacity (at work or home). A couple of months after I stopped working, I got a bit more relief regarding pain levels, and I now tend to only have shorter runs of really bad pain. Hopefully the reduction in stress and the ability to rest more will help you. I hope tomorrow is a better day....

07/10/2009 07:39 PM
connybunn
Posts: 29
Member

Thanks for your compassion! It helps me get through it. I hope tomorrow is better too!

Talk to you all later!

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