dehabel Posted June 18, 2020 Share Posted June 18, 2020 (edited) Today I went to a new neurologist and as I already knew the guy I hated did everything wrong. Thenew guy gave me twelve days of steroids, the correct mg of verapamil, oxygen, and Indocin...anyone used the Indocin? My oxygen should be delivered tomorrow. I had two completely pain free nights and then last night a glimmer of the pain came back. Head feels wonky today. My husband is picking up my prescriptions on his way home from work, so I am counting on the steroids to do the trick. Edited June 18, 2020 by dehabel Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted June 19, 2020 Share Posted June 19, 2020 Indocin and indomethacin are the same drug.....it's usually prescribed (and works well, usually in just a few days) for a hemicrania continua diagnosis and is also used as a diagnostic drug since it doesn't usually work for clusters....odd that they would prescribe it along with frontline cluster medications! Dallas Denny 1 Quote Link to comment Share on other sites More sharing options...
dehabel Posted June 19, 2020 Author Share Posted June 19, 2020 He said to use it with the oxygen if needed instead of Imitrex. Quote Link to comment Share on other sites More sharing options...
kat_92 Posted June 19, 2020 Share Posted June 19, 2020 6 hours ago, dehabel said: Today I went to a new neurologist and as I already knew the guy I hated did everything wrong. Thenew guy gave me twelve days of steroids, the correct mg of verapamil, oxygen, and Indocin...anyone used the Indocin? My oxygen should be delivered tomorrow. I had two completely pain free nights and then last night a glimmer of the pain came back. Head feels wonky today. My husband is picking up my prescriptions on his way home from work, so I am counting on the steroids to do the trick. Glad you found a decent doc! I’ve been to 5 already lol. What new mg of verapamil are you on? And glad to hear about the O2. You’re gonna want a regulator that is minimum 15 lpm. Wtfarley is a good website to shop for regulators. You’re also going to want the cluster O2 mask. A link can be found for that on the website. More experienced members can answer set up questions if you have any. Happy for you! Kat Quote Link to comment Share on other sites More sharing options...
kat_92 Posted June 19, 2020 Share Posted June 19, 2020 Also, a few words of caution with the indomethacin. It is used to treat Hemicrania continua, it most likely won’t work for clusters. I was on it for a week just to see if it would help my headaches because I don’t officially have a Ch diagnosis. I think I do most likely have Ch at this point though. You MUST take it with food. An actual meal. Not just a snack. And drink a lot of water with it. Taking it like that, should only make you a bit nauseous. If you take it on an empty stomach you will feel DRUNK. it is awful. The headaches it gives me the next day aren’t worth the medication in my opinion. Quote Link to comment Share on other sites More sharing options...
dehabel Posted June 19, 2020 Author Share Posted June 19, 2020 (edited) Thanks, then I won’t bother with it. You all have helped me so much! 240 mg of verapamil which is what I was previously on. Edited June 19, 2020 by dehabel 1 Quote Link to comment Share on other sites More sharing options...
kat_92 Posted June 19, 2020 Share Posted June 19, 2020 @dehabel I wouldn’t say don’t bother with it. But it’s a harsh drug on the stomach long term. Unless you think you might have one of the other TACs and not clusters, it might not work for you 1 Quote Link to comment Share on other sites More sharing options...
FunTimes Posted June 19, 2020 Share Posted June 19, 2020 Depending on what size oxygen tanks you get delivered you will need one of 2 size regulators. I will attach links for the M and M60 and E size tanks. M size tanks are larger and great to keep at the house, E tanks are good to keep in your car for work and travel. The mask makes a huge difference in the treatment so dont give up on it with the small one you will get from the oxygen place you have, Order the one below. This regulator will work on E tanks https://www.amazon.com/EverOne-Oxygen-Regulator-Liters-Connection/dp/B07L9P7V55/ref=sr_1_fkmrnull_1_sspa?keywords=25plm+oxygen+regulator&qid=1554376658&s=gateway&sr=8-1-fkmrnull-spons&psc=1 This one will work on the M and M60 tanks https://www.amazon.com/Oxygen-Regulator-Standard-Body-CGA540-protector/dp/B00BXRBJG8/ref=sr_1_fkmrnull_3_sspa?keywords=540+CGA+oxygen+regulator+0-25lpm&qid=1554376819&s=gateway&sr=8-3-fkmrnull-spons&psc=1 The mask can be found here http://www.clusterheadaches.com/ccp8/index.php?app=ecom&ns=prodshow&ref=clustero2kit 1 Quote Link to comment Share on other sites More sharing options...
dehabel Posted June 19, 2020 Author Share Posted June 19, 2020 Thank you! By the way, I have had Four!!!!! Pain free nights! Quote Link to comment Share on other sites More sharing options...
Rod H Posted June 19, 2020 Share Posted June 19, 2020 Great news on the pf nights and new dr. I wouldn't rule out taking the indo if it works it maybe you have a smart Dr. trying to rule out hc. Figure out your o2 it is a life changer. Because when the prednisone stops you may need it if this course doesn't stop your cycle. Quote Link to comment Share on other sites More sharing options...
dehabel Posted June 19, 2020 Author Share Posted June 19, 2020 Let me ask you this. When you have taken the prednisone in the past did it make you feel completely normal, like the cycle had ended? I don't remember it doing that before when I took it like 10 years ago. This time, it is like it never happened. Totally normal. Quote Link to comment Share on other sites More sharing options...
Rod H Posted June 19, 2020 Share Posted June 19, 2020 No not on the 1st day but I've had pred stop cycles before. Quote Link to comment Share on other sites More sharing options...
dehabel Posted June 19, 2020 Author Share Posted June 19, 2020 Thanks! Hoping with my blood dosorder diagnosis they are gone forever. Apparently polycythemia vera can aggravate CH and the phlebotomy can relieve it according to my oncologist and neurologist. So at this point I am a bit thankful for my head l, it probably saved my life. 2 Quote Link to comment Share on other sites More sharing options...
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