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ClusterBusters

AnitaJ

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Posts 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 we're in this war zone.

    Thanks for the support.


  2. 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 bought one of the Cluster O2 kits and am urging him to continue to try the oxygen. Hard to convince him when he feels a cluster coming on and can't think about anything but pain...but I'm trying.

    We're flying this weekend and are hoping that the injections don't get stopped by TSA--but everything you've told me here makes me optimistic!

    Your hope keeps me going. :) Thank you!


  3. Thanks everyone! Jon019, salmon, really? :P

    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.

    • Like 1

  4. 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.


  5. 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!


  6. 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 this particular cluster. He may be on other meds, I'm not sure--he works closely with his doctor to monitor them as we're both aware that taking a large amount of pharmaceuticals can be harmful in the long run. It is not the way we want to go, but right now we are truly trying as much as we can.

    Despite my continued pushing to use O2, he is convinced that it does not work for him. We have two tanks and a nonrebreather mask, and we have tried before, but he will no longer use it. It's extraordinarily frustrating to me, as I think he could learn a lot about the proper use and technique of O2 to potentially get relief, but he won't try it. I wish I could have another CH meet up with him to discuss the benefits. Understandably, he doesn't want to get his hopes up trying something that may not work; but it's very difficult for me to sit here while he stubbornly refuses to try it again.

    However...it's his pain, and I'm here for support--not criticism. He is doing his best to live through this agony, and I admire him and love him. My heart breaks to watch him go through this, but whatever I can do to help him, I'll do. I'll gather as much information as I can but in the end, all I can do is love him and lift him up however I can.

    I appreciate this site and your support. It's really helping at this particular low time.

     

    • Like 3

  7. 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 talking about moving someplace with less barometric pressure shifts...anything to help, basically. He has preventative meds, abortive meds, and a great neurologist who's willing to work with him and try new things, but it seems like nothing works lately. He's convinced that he's going to spend the rest of his life with a headache every day. I wish I had more to offer him in terms of reassurance.

    Thanks for your insight, everyone. It's very helpful.


  8. 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.

     

    Thanks for any advice. We're knee-deep in the logistics and treatments, but right now what we need is a little cheering up.


  9. 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.


  10. 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 partner.


  11. 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.)


  12. 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 to speak with or meet up with someone who has more information on the O2, because I have a feeling hearing it from someone who's familiar with it would help. But again--I will just be here to support him, gather as much information as I can, and stay out of the way as needed.


  13. 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.


  14. 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.


  15. 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)


  16. 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; holes on the side and a bag attached. Th =e bag did stay inflated the entire time, which I thought was the correct way to do it but maybe it's not?

     

    I really do think that we are just not doing it all correctly and that we need to keep going and get the best equipment and try again. I'm not giving up on oxygen and I hope I can convince my husband to keep going with it.

     

    (Funny story, yesterday at the hospital I asked if I could hook my mask up to the o2 while we waited for the doctor. The nurse said "sure, what's the flow rate?" I responded "15." And she just pauses and says "Wow....that's...really high!" I just kind of laughed and said "Oh yes. I know." I think we've been educating this hospital about cluster headaches for the past few years!)


  17. 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 too late? 

     

    I was just so certain that this would work, and I'm so worried that it won't. This cluster seems particularly bad; they're very close together and the shadow is always there. I guess I'm just a little discouraged.


  18. 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; unfortunately I wasn't able to be there with him at the store). They DID attempt to give him a converter and send him on his way, but due to a lot of the materials on this website, I was able to let him know that he did NOT want to leave with that and not the tanks. He politely and firmly stressed to the store that a converter would not be sufficient, but somehow they ended up giving it to him anyway along with the tanks. So, not sure what we should do with that. He says it's pretty unwieldy. I guess I'll know more when I get home and see for myself.

     

    Some more good news is that he was able to obtain some relief last night with only 8 lpm of oxygen, so we are very hopeful that a stronger flow will abort his next hit.

     

    I don't know what I would do without all of you. Your help and support is amazing. I feel so much hope just corresponding with all of you. Thank you for providing me with your experience, knowledge, and kindness.


  19. 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 attitudes).


  20. 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 him; he's the one who finally diagnosed my husband as opposed to dismissing his pain.


  21. 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 this forum! Just having support and knowing we are not alone is so helpful.

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