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  1. Like
    Newbie13 reacted to Dana129 in New - Looking for Support   
    I couldn’t agree more, if there is one thing cluster headaches has taught me, it’s to make the most of every moment you have and to not waste time, life is short enough as it is for people without cluster headaches, it’s damn well even shorter when you’re a ch’r, read a quote that said “life happens between cycles” hit me hard
  2. Like
    Newbie13 reacted to Brain on fire in New - Looking for Support   
    Apologies if I seemed harsh. I just get really pissed when I see no oxygen, a boatload of meds with each of their own added risks & little to no relief. A decent doc doesn't sit & watch ya suffer. No apology necessarily @jon019 your post re caffeine just popped up, good catch.
  3. Like
    Newbie13 reacted to Marcelo_11 in New here and super happy to be here   
    Hello guys I just wanted to say that I’m so very happy to have found this website! Its nice to know that in this very small community of us who share this pain, there is a place for us to chat and help each other. I have been walking hand and hand with the beast for 8 years now, with my first cycle (at age 17) lasting a little over a year. I am 25 years old and am currently in my 3rd cycle and I’m not sure how to say it but this time almost broke me.. the sleeping 2 hours a day with the headaches switching from the right to the left side continuously have if 8 plus headaches a day, the nausea, and the fluctuation of aggression and depression you could say. I don’t mean to bore you all with my post just thought I’d share a bit about myself being as I’m new to the forum. Luckily i found out about cluster busters and I feel relieved to know I’m not alone because no matter how much friends and family try to understand, they will never understand how much it truly hurts us. Thank you all for taking the time to read this. 
  4. Like
    Newbie13 got a reaction from spiny in Question about fatigue   
    Scouts honor! Thank you for the advice!
  5. Thanks
    Newbie13 reacted to ChrisK in Question about fatigue   
    only when I take the additional 240mg"s of the verap.  makes it tough to work out, and mostly drained of energy.  Like I said when the D3 regemine kicks in and I drop the extra verap, my energy levels go back to normal.  Also fatigue is always a problem in a cycle for me due to the stress.  But as soon as I'm pain free,  I'm good to go.
  6. Like
    Newbie13 reacted to MoxieGirl in Thank you   
    Alcohol isn't a trigger for everyone. Doesn't affect my clusters at all, and 9 or so shots of vodka will abort a migraine. So that's handy for when the pills don't work.
    This forum very much saved my life when my clusters were at their worst. I was literally putting a date in my calendar for when I was going to exit planet Earth. Then came here, created an account and it turned my life around. There be good people here.
    xx Mox
  7. Like
    Newbie13 got a reaction from spiny in Thank you   
    40mg 3x per day for the next few days, then up to 80mg 3x for 3 months assuming I can tolerate it. I have low BP generally so keeping a close eye on it.
    I had a painless awakening this morning - it was such a weird feeling. Trying to describe this to loved ones is so strange. My heart goes out to everyone who has dealt with this for years... holy crap it's bizarre. 
  8. Like
    Newbie13 reacted to Brain on fire in Thank you   
    It can be bizarre, there is hope all over this forum. I had Chronic Cluster Headaches (everyday, no cycles & no breaks) until I found this forum, did a bunch of reading & asked a ton of questions.
  9. Thanks
    Newbie13 reacted to CHfather in Thank you   
    Cycles seem to end differently for everyone.  For some, there's an increase in severity/duration before a cycle ends, for others it's a more gradual tapering.  Unfortunately, it is likely that your attacks will return after the pred taper, unless your cycle has actually ended. Sometimes it does seem that the pred will end a cycle, but that seems rare (and there's no way to know in most cases whether it was ending in any event).  I would suggest starting on the D3 regimen as soon as possible. There is about an 80% likelihood that your D is too low just by normal medical standards, and a nearly 100% likelihood that it's too low to treat CH.
    Wonderful that you have such a capable and caring neuro!  
  10. Like
    Newbie13 got a reaction from CHfather in Thank you   
    @spiny - thank you, really appreciate this info. The more I hear/read, the more faith I have in my neuro (which is so encouraging). On Prednisone and pain is gone, beginning to taper down yesterday and noticed some shadow pain .. hoping the verap will do it's job as I decrease the pred. 
    Question - how do I know if a cycle is ending? Because of the sinus diagnosis, I was on Prednisone twice for a few days at a time, and pain came back with a vengeance after the last dose each time. I'm nervous that the same thing will happen with this round.
  11. Like
    Newbie13 got a reaction from CHfather in Thank you   
    Thank you @CHFather, oxygen was the first thing my neurologist recommended, and I've got an order in process. Thankfully she seems to be right in line with what I've seen recommended on here - she even mentioned the vitamin D3 regimine once I get my blood test results. 
  12. Like
    Newbie13 reacted to Brain on fire in Thank you   
    Welcome aboard Newbie13. I see you already appreciate the forum, thank you. The longer you stay the more you will appreciate it.
  13. Like
    Newbie13 got a reaction from spiny in Thank you   
    Hello Cluster world, I'm new here. Currently eperiencing my first cycle (28yo female), misdiagnosed for 4 weeks as sinus headache, getting into a neurologist before December due to a cancellation. I've had migraines for 15 years but wow... This is a whole new level. I thought I was losing my mind, the pain didn't seem real or the patterns logical... Anyways, I wanted to say thank you all for sharing your stories and insights. I've been digging into the forum and I feel so encouraged by this community. I'm terrified and processing this new reality, but it helps to read about everyone's experiences, and know I'm not alone. Thank you all!