Jump to content

AnitaJ

Advanced Members
  • Content Count

    32
  • Joined

  • Last visited

Community Reputation

4 Neutral

About AnitaJ

  • Rank
    Advanced Member

Recent Profile Visitors

1,021 profile views
  1. Hi Anita, just wanted to let you that I am sending you my prayers so that you never experience a headache again in your life. I see that you are improving. Was it the shrooms?

    1. AnitaJ

      AnitaJ

      Thank you, Jimmy! It's actually my husband who's the clusterhead.

      He had a ketamine infusion on July 10 and since then, he has been symptom free. (Not pain free, but he hasn't had any attacks since then.) We are crossing our fingers that this particular cycle is broken. We're also looking at starting to grown our own shrooms and get some seeds and be prepared for the next attack, whenever that might be. I hope it's not soon.

      Thank you for asking. Are you also a clusterhead?

  2. 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
  3. 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.
  4. 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
  5. 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.
  6. 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.
  7. 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!
  8. 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
  9. 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
  10. 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.
  11. 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.
  12. 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.
  13. 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
  14. 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.)
  15. 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
×
×
  • Create New...