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Questions for indomethacin and sumitriptan patients

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While I don't have an official diagnosis yet it seems very clear clusters have hit me - starting about 10 days ago.  I'm so far lucky in that I have an appt with a neurologist tomorrow, today I saw a primary care (had to do that first).  She was more helpful that expected, and while she wouldn't give me oxygen (wanted the neurologist to do that, oh goodie another night in terror/pain) but she did give me indomethacin 50mg.  It says to take twice a day - but as I've never had this nor read much about it yet I wanted to see if others had thoughts on it.

She also gave me 100mg sumitriptan (oral) that I only take as needed, then another 2 hours apart.  I've see triptans in many posts but also don't know enough about them, side effects, etc.  I tell ya, it's really frustrating, hell infuriating, that they'll give me drugs but I have to fight to get oxygen.  I generally don't agree with conspiracy theories about docs wanting to prescribe this or that to help themselves but I gotta admit, this is definitely a WTF moment.

Oh, and I fully realize that no one can give me "medical advice" online, I'm simply hoping others will share their experiences.

Thanks,Insert other media

-Ross

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My doctor also prescribed indomethacin just to rule out Hemicrania continua; I wasn’t able to tell if it really did much for the headaches because I am also on the d3 regimen. So it was hard to tell which was doing the heavy lifting. I will say this about indomethacin, I’m not sure if I am the only one who experienced horrendous side effects. I would instantly get super dizzy and nauseous after taking it. Also the next day I would wake up with a headache so bad I’d have to cancel all of my plans. I couldn’t even move my head. Not sure which one felt worse honestly. I called my doctor and they advised me to take it right after eating (a meal not just something small) and take it with an entire bottle of water. I wish you the best of luck! 

Kat 

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You need to get a solid diagnosis.  You provider is just throwing stuff against the wall to see what sticks.  Indomethicin is used to support the diagnosis of hemicranium continum as it does not help clusters as a general rule.  O2 is very helpful for folks with classic episodic cluster headaches.  A provider reluctant to prescribe in the face of a cluster diagnosis has no clue what they are treating or how to manage cluster headaches. Oral triptans are useless to address cluster headaches.  Subq or nasal triptans can be very helpful to alleviate acute pain but you run a risk of rebound headaches.  Once you have an accurate diagnosis you can develop a treatment strategy.   

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It is hard on your guts. Many take a something for that.

The symptoms you are experiencing are rather common. If it is giving you a headache, why take it at all? It is used for Hemacrania's, not clusters. Sometimes they give it to rule out hemicrania. Since you are having such a rough go of it and do not feel that it is helping, you might stop taking it and wait till you see the Neuro. Tell him about your experience! It is a very powerful NSAID and not to be used lightly. Especially if you will not benefit from it.

And Pebbles is correct about it not helping Clusters - at all. 

Hang in there. Tomorrow is coming soon! 

 

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Once again your input is invaluable - but let me clarify, I haven't taken the indomethacin or sumitriptan yet - I just got the scripts a few hours ago.  From what I just read it sounds like I do NOT want to take them anyway, gives me a headache???  WTF!  That's WHY I would be taking them!  I also don't have a weak gut at all, pretty strong actually, but (before this) would rather feel anything other than nausea!!

I think at this point I'll try to sumitriptan if I have an attack - you say oral doesn't work for clusters at all - again WTF?  Is that one persons opinion of consensus?

I've said it before and I'll say it again, I think the scariest thing a doctor can tell you (in the face of something serious) is "I dunno".  I was straight up disappointed when they couldn't find anything on the CT or MRI.  Just give me something to fight, not a mystery condition!

23 hours to the neurologist.  I just keep counting that time.  

~Ross

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Oral sumatriptan's onset of action is too slow to be helpful in cluster attacks.  I would say there is universal agreement about this in the cluster community.  It has been used to help prevent an attack and help get a night's sleep but that is "off label" as it is technically not indicated for prevention of headaches.  Indomethacin is a very potent NSAID and very hard on the tummy.  It can also cause some dysphoria.  It is a difficult medication to use long term for those and other reasons.  In this context it is used to help establish a diagnosis.

 

You would rather a doctor be honest and say I dunno than pretend to know and prescribe a bunch of useless therapies.  Its best to find a physician partner to work with you to try interventions known to work.  You really want someone humble, not dogmatic and willing to listen.  It may seem like a tall order but remember most folks who go to medical school want to help and relieve suffering.  Its only later in their career when  crushed by rules, administrators and lawyers that they get jaded and unhelpful.

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There's a lot of crazy, lazy doctoring in here, and plenty of excellent comments and advice from your CB friends.  

As others have said (and I said at a different post of yours from today), sumatriptan pills are useless.  

Indomethacin, just to repeat, is used to treat the CH "lookalike," hemicrania (continua/paroxysmal).  For all practical purposes, your doctor doesn't know which you have, CH or a hemicrania, so it's not theoretically unwise to prescribe indomethacin, which is a strong nonsteroidal anti-inflammatory.  Beyond the advice that kat' got, it should be taken with something that protects the stomach lining, typically a proton pump inhibitor such as Prevacid or Prilosec.  I haven't heard of headache as a common side effect of Indo, but it's a potent medicine so it's entirely possible that it afflicted kat' in that way.  Have only read of a few people who didn't find it hard to tolerate for the gut issues.  100mg/day of Indo is a pretty big initial dose, particularly in 50mg increments.  https://americanheadachesociety.org/wp-content/uploads/2018/05/Hemicrania_Continue_June_2015.pdf  

I can't say what I would do if I were in your situation, but I'm pretty sure I'd hold off on the Indo since you have that neuro appointment tomorrow..  If you get O2 fairly quickly, maybe you want to see how that helps, but I'd imagine Monday might be the soonest you'll get it if the neuro prescribes it.  Pray that the neuro knows what s/he is doing and gives a s**t, and ask for at least a triptan nasal spray in addition to the O2. If you get injections, you can split them from the 6mg injector to 2 or 3 mg doses (just ask and we'll tell you how). That's a lot less toxic and a lot less likely to cause significant rebounds.  Maybe you can get a prednisone taper (I don't fully remember your current status) to possibly hold off the pain for at least a few days until you get the O2.

Have you read the suggestions in here for dealing with CH without the proper pharma prescriptions?  https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/  Caffeine/energy shots usually help.  Ice water to the palate sometimes helps.  In one study, inhaling cold air from an air conditioning vent (home or car) was as effective as using a rudimentary O2 system. 

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