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Newbie13

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  1. Newbie13

    New - Looking for Support

    I third that- and makes me have more grace for people moving slowing in front of me, taking an extra second to respond, or seeming distracted... Man, I am judgemental! This has been a reality check for sure.
  2. Newbie13

    Question about fatigue

    Scouts honor! Thank you for the advice!
  3. Newbie13

    Question about fatigue

    I have good BP normally, and sticking around 107/65 on the verap. I was hoping the new meds might help with the fatigue (been dealing with that since the onset 7 weeks ago). Thank you for sharing your experience!
  4. Newbie13

    Question about fatigue

    I'm not sure if the fatigue is from the meds or the cycle - that's definitely something I can try. Do you normally have fatigue like that during/after a cycle?
  5. Newbie13

    Question about fatigue

    Hi all, I mentioned before that I'm experiencing my first cluster cycle, pain free for 6 days thanks to pred, ramping up on verap. I feel horribly drained- both physically and cognitively. It takes everything I've got to do a normal work day. Is this normal during pain free periods? Assuming that this cycle ends, how long does it take to feel normal again? I haven't been able to do anything more physical than a walk for almost 2 months. Also, I changed my SSRI from celexa to Prozac 3 months ago. Has anyone heard of this leading to a first cluster cycle?
  6. Newbie13

    Thank you

    Hi @MoxieGirl - thank you for the welcome! I appreciate you sharing your experience, I completely relate to the sun/moon analogy and will try it out! I typically drink 5-6 drinks a week (usually weekends) but stopped once I read about it on this forum. Interesting that it can be used to gauge whether the cycle has ended - I'll try that out once I get further along. Right now I'm scared to touch the stuff at the moment, as I'm sure others can relate... I'm so encouraged by this forum, and happy to know that there is a community that gets it... Though I hate that we have to 'get it' at all.
  7. Newbie13

    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. Newbie13

    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.
  9. Newbie13

    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.
  10. Newbie13

    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!
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