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Everything posted by AnitaJ

  1. Well, flying with meds was not a problem--surprisingly! And his 5 day steroid infusion gave us 5 great low-pain days. But now it's back and worse than ever. Not entirely sure what to do. We're at the hospital right now. Not to mention, the nurse is snotty with a bad attitude and of course, doesn't believe what we're telling her. ("He uses a nonrebreather mask? ..REALLY?" Do you think I am lying to you?!?!?!) I will get into all the info about busting as soon as I can, since that seems to be where we're headed. It's just so hard to get anything done other than the minimum of survival when
  2. Thanks so much, everyone! Today's the big day--flying with meds and CH. Will let you know how it goes. I appreciate all the support.
  3. Hi, all--just wanted to say thanks and give an update. Husband has had 2 sphenopalatine ganglion nerve blocks, which gave him some relief for a couple of days. Last time the doc coupled it with (I think?) something like the gammaCore treatment, but I'm really not certain about that. He did say that it may get a little worse before it gets better, and that appears to be the case this week. Frequency of headaches has decreased but intensity of pain has increased. We are still scheduled for the ketamine infusion in two weeks, and in the meantime we have triptan shots and pills. I also b
  4. Thanks everyone! Jon019, salmon, really? Things are progressing. My husband had a sphenopalatine ganglion nerve block on Friday, and he's only had one minor CH instance since then. He's also gone on Depakote and upped his Vitamin D intake. Seeing his neurologist at least once a week, and scheduled for a ketamine infusion in July. It's a really low time for him, and I'm doing my best to keep our hopes up. We have to figure this out and learn how to keep going.
  5. Thanks for the info, everyone! I'm looking into RC seeds as we speak. CHFather, I'd love to look into the conference but that brings up more questions I have. Can't flying trigger an attack? (The pressure change, etc.) And has anyone ever flown with their sumatriptan injections? We have a trip planned next month and I'm scared that TSA will just take away his shots for no good reason.
  6. Wow, thanks everyone! This is all great stuff. I did have questions about suicide specifically...while I don't think my husband is suicidal, I can't imagine that it hasn't crossed his mind. How do you cope with those thoughts? MoxieGirl, I'm so very glad you're OK and you're here. And in case anyone else is wondering, you guys are an inspiration! Seriously. Your strength and your support is amazing. I think it's time to give busting a try. I guess the place to start is...where would we get them!
  7. CHFather, thank you--I always appreciate reading your responses on these boards. I'm sending him the D3 regimen info now--he's probably not yet able to read it through, since he's in a bad cluster, but I'll scan it and see if I can provide him with the highlights. He's open to busting, and if I can get him to read the files I'd consider that a huge win. I don't know the exact levels of his meds, but he's on Verapamil with the Sumatriptan injections (which we've learned to split, thanks to this site, and that's been very helpful), and currently on Prednisone to try and taper thi
  8. Thanks, all, for your responses. Jon, love your attitude. Spiny & Bejeeber, your comments made me think that perhaps this is just a longer-than-normal cycle. They're usually 4-6 months and this one is going on a year. So maybe it's just that they're getting longer, not that he's going episodic? He's getting headaches more frequently over the past few weeks, and this cycle started last August. He had almost two months PF until last week, and now we are back to square one. It seems very hopeless and I'm doing my best to keep his spirits up and keep everything together. We're even t
  9. HI all-- Any advice for hope when it seems hopeless? My husband thinks he's going from episodic to chronic and he's really low. Additionally, does anyone have experience with episodic-to-chronic? How do you handle it? Thanks.
  10. Happy Holidays! Well, kind of... Wondering if anyone has tips on how to beat the grief that comes with CH. Right now is a particularly low point of the year as we struggle through the holiday season stressing about whether or not we'll be able to make it to family events, wondering if relief will ever last, etc. I try and stay as positive as possible for my husband while still acknowledging that yes, CH is real and affects our lives. I'd never want to try and Pollyanna his concerns away. But I love him very much, and if I can shine a small light of happiness and hope around us, I will.
  11. I'm interested in this as well! My husband has been having an extremely rough time with all of the weather changes here in DC. We've toyed around with the idea of finding someplace with a more stable climate, but haven't really thought seriously about it. Would love any insight.
  12. LeanOnMe, CHFather is amazing and his advice is fantastic, so I encourage you to enthusiastically pursue his suggestions. I'm also the wife of a Clusterhead, and would be happy to talk with you about the experience and the steps that can be taken. This community is wonderful, and their knowledge is invaluable. I will say that Excedrin Migraine is most likely not going to help, and that Imitrex will. Also, you can definitely press hard to get an oxygen Rx--I've found that the more information we have, the more inclined the doctors are to listen to us. Regardless, best of luck to you and your
  13. You are all so very kind, thank you for the offers. I do think I will take you up on it one day! His doc administered lidocaine last week, I just found out...is that standard? (While I hate that I have to learn about this, I'm happy that I can keep on asking you questions. Thank you for that.)
  14. Thanks to all, again, and apologies for my radio silence for a bit. His doctor has him now on magnesium and something else, vitamin B maybe? I can't quite recall. The shadow is still there, but we're having longer stretches between the hits, which is at least something. We also received the DosePro sumatriptan injections, which use compressed air and not a needle, so we can't split those, which is disappointing--when we had one of the needle kinds, splitting the dose really helped. I'm going to give it a little bit of time before I push on the O2 again. I wish I could encourage him
  15. Thank you for your kind words. I'm going to keep doing research but as of right now he seems dead set on thinking that "it doesn't help and we should look for other options". I think we just need to make sure we have all the right materials and learn how best to use it, but in the end I can't force him to try it again. I'm very disappointed. I was truly hoping this would help.
  16. Thanks, CHfather. I also don't know why he's using the concentrator, but I'm doing the best I can to give him as much info as I can. In the end he needs to be the one to really put it into action, and I don't think I'm being helpful for him right now, which stinks.
  17. Thank you, all. ThatHurtsMyHead, we do have a mask with a gasket (the disc) on one side and holes on the other. Should I tape over both the holes and the gasket, or just the holes? We had a good 48 hour run with no attacks, but it's creeping back up today. Currently it appears he's hooked up to the concentrator and he says that the pain is at least not increasing, so that's good, I suppose. (I'm not with him at the moment)
  18. Thank you all so much again. I really appreciate it. CHfather, what GREAT info. THANK YOU so much. I've sent it along to my husband, and he is seeing his doc on Friday, so we can hopefully get those blood tests and whatnot. (I'm hoping maybe I can be there for that. I've been doing a lot of the research and I would love to tag along if possible.) And yes, actually, the link I posted was techniques and tips from a user named Batch--must be the same! But honestly, I don't know if we were doing it right. It all happened very fast. Bill, that's exactly the mask we have from the store; hole
  19. Thanks for the responses. I wish I had more info, but by the time I knew he needed help I was rushing home to him, so not sure of the specifics...I think he probably started when the pain started and not before. It's hard for me to understand, because since he's in a cluster, the shadow is always there, and it's been coming and going...last peak hit was at midnight, and he took a sumatriptan shot then which helped, but the shadow was there all the way until noon when his next peak hit. I know he drank a Red Bull right before he grabbed the o2. Perhaps it's just that he got to the oxygen to
  20. Well, bad news. I don't know what went wrong, but we tried the o2 abort today and it didn't work. We have a nonrebreather mask from the oxygen store and were trying 15 lpm (with breathing techniques from here http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1313766756)and it kept getting worse. We are now back at the hospital. I'm so disappointed. What did I do wrong?
  21. Bob--thank you so much for responding! Your support and information is much appreciated. I am honored that you took the time to answer my question. CHfather, we have some good news on the oxygen front. My husband is just now returning home with two tanks and a 15 lpm regulator (I've already ordered him a 25 lpm online, but they gave him the 15 with the tank, so we just took it). I also ordered a nonrebreather mask online that should be arriving shortly. I cannot thank you enough for all of your advice. We did ask for a larger tank, but they were unable to give it to us (why? I'm unsure
  22. Typo-- I meant to say in our area. I would also like to reiterate my thanks for taking the time to read and respond to my messages. I truly, truly appreciate it.
  23. Thanks, all! CHfather, there are various medical supply stores in our are that supply oxygen tanks for home use as well as other equipment. I do have a question, just curious. When we went to the ER this past time, the doctors and nurses were (unsurprisingly) not very knowledgable about CH. They gave him Benadryl and Valium at first. Neither brought relief, but I'm wondering--are those things that may have helped others with CH before? I'm stumped as to why they prescribed those. I assume it's because they were not terribly concerned and just threw some drugs at us (didn't have the best atti
  24. CHFather--unfortunately, I wasn't at the appointment with my husband, and from what I understand, he didn't really ask about the oxygen. (I hate being this pushy, but I'm the one who really wants to get all of the supplies together because I know it could help him. He's just a little skeptical since in his mind he's already "tried it" and it didn't work.) So he has plans to go to the store next week and I'm encouraging him to ask about regulators and masks, and if I can go with him I will. His neurologist is Dr. Pedro Macedo at Washington Medical Group in Dupont Circle. I highly recommend
  25. Thank you all again! I'm very interested in learning more about busting, and I hope my husband will as well. Once this cluster subsides I'll be diving into that option. CHfather, THANK YOU for the tip about splitting the injections. We did that last night and it was so helpful. I will also definitely check out the vitamin D regimen. And yes, for anyone in the DC area, we have a truly wonderful neurologist and I'm happy to share his information. My husband is lucky to have found someone who knows about clusters and is always willing to listen and assist. And I feel lucky to have found thi
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