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  1. J

    IV antibiotics and Migraines

    Thanks for the tips guys! Haven't had any migraine symptoms yet today, so I'm not sure it's directly correlated to the higher concentrations of Ceftazidime (or maybe all the water I've been drinking has helped ;))
  2. J

    IV antibiotics and Migraines

    Dehydration is also my main cause of head aches, so I've been trying my best to stay hydrated, but it that doesn't seem to be alleviating the symptoms. Thank you for the input though! I've also heard that one of the best ways to prevent a migraine from getting bad is to drink coffee? Apparently...
  3. J

    IV antibiotics and Migraines

    I have only ever had one other migraine in my life - it was back in August, and it came seemingly out of nowhere, but I had the "warning signs" of a migraine aura, tingling/ numbness in my hand and face, before the actual headache started. I went to the ER and they gave me reglan and ibuprofen...
  4. J

    anxious about not feeling good despite good numbers?

    Just wanted to say thanks everyone for helping me out w/ this!!! I've since started IVs, b/c although my FEV1 is still very good, when we looked back over the past year it's gone down about 10%. My last culture came back positive for MAC (I knew it) and pseudomonas (wasn't expecting this one)...
  5. J

    Aquagenetic wrinkling that doesn't go away?

    Hello! This does happen to me sometimes, and sometimes it doesn't... I can't seem to figure out a pattern, except maybe it's worse during exacerbations, or if it has something to do with the weather drying out my hands or something? Sometimes it will happen consistently for a while, and then...
  6. J

    Mild Cyanosis of Fingernails

    Just curious if anyone else experiences this and if it's a cause for any concern? I've been noticing lately that my fingernails tend to be blue/purple-ish (starting near the cuticle and extending outwards). I've always had very very mild clubbing. O2 is good, although I've been getting bouts of...
  7. J

    anxious about not feeling good despite good numbers?

    Thanks for the information, 4hats! I'm glad you're feeling better on the treatment. I have a clinic appointment tomorrow, and I think I'll ask if they think a bronch would be a good idea to find out if I definitely got rid of the MAC or not. Probably wouldn't hurt.
  8. J

    anxious about not feeling good despite good numbers?

    Hello 4hats, thanks for your comment. Yes, I did treat the MAC with a combination of rifampin, ethambutol, and clarithromycin for a little over six months. The follow up bronch came back negative for MAC, and that was about a year and a half ago. Do you know if MAC has a tendency to show up...
  9. J

    anxious about not feeling good despite good numbers?

    lsveburg, thank you for the information, that's something to keep in mind! I'm pretty sure my Hgb was normal on my last test (I get petechial rashes sometimes so they checked out my blood cell counts and everything came back normal... still not sure what causes them, but no one seems too...
  10. J

    anxious about not feeling good despite good numbers?

    Hello nmw0615, thanks for your comment! Hmm, maybe I will ask at my next clinic appt. about a sleep study... do you think it's possible to be at 98%-100% during the day and drop low enough at night to need oxygen? From what I understand it would have to drop below 90% to require supplemental...
  11. J

    anxious about not feeling good despite good numbers?

    Hi, thank you so much for your comment! I think that my enzyme dosage is good. I adjusted it less than a year ago, actually started taking less (probably b/c I lost weight) and it helped some stomach issues I was having a lot...So I'm sort of hesitant to mess with the dosage again, but maybe I...
  12. J

    anxious about not feeling good despite good numbers?

    Hello all. I don't come on these forums too often, but lately I've been struggling a bit and could really use some advice. I'm 21 w/ CF and have always been considered pretty healthy. My FEV1 is rarely below 100%, and I think the lowest it's ever been was around 90%. My resting O2 is never below...
  13. J

    Minocycline Side Effects?

    Hello, thank you for your response! I don't remember the dosage at the moment and I don't have the bottle on me. But I did (eventually) call my doctor and he ended up prescribing Zofran to take an hour before each dose of the Minocycline. Thankfully it's been helping, I was just trying to find...
  14. J

    Minocycline Side Effects?

    So lately I've had this particularly nasty cough, and I usually take Levaquin to treat the bacteria I have, but it hasn't been helping, so I've been trying new antibiotics to treat it. I've been taking Minocycline 5 days now and the good news is my cough has calmed down loads, but the bad news...
  15. J

    Paid Surveys for Cf Patients?

    Hello, I hope everyone is doing well! So I just wanted to share that I found this website called RarePatientVoice (I think I may have heard about it from some one on here?) which allows people with diseases considered "rare" to take surveys and occasionally get rewards in the form of gift...
  16. J

    Sleep Issues - Is This Common with CF?

    vbs420: I have no idea what caused the migraine, but I had slept in pretty late and hadn't really had anything to eat but eggs and coffee that day. I started feeling super dehydrated though and downed a couple bottles of water which was weird. And yeah, I always have the munchies yet I've lost...
  17. J

    Sleep Issues - Is This Common with CF?

    Sorry I've been a while, thanks everyone for your advice! I'm thinking about trying out melatonin if I'm still having a lot of trouble once school starts again. I'm waiting on blood work so I should find out soon if I might have low iron levels or if some other deficiency could be the culprit...
  18. J

    Sleep Issues - Is This Common with CF?

    Thanks everyone! I'm sorry you guys all have sleep troubles too, but it is a bit comforting to know I'm not the only one - you both pretty much described exactly what I'm experiencing. I've tried turning off all tv/computer screens too, but for some reason i seem more likely to fall asleep if I...
  19. J

    Sleep Issues - Is This Common with CF?

    Thanks for the response! No I haven't had my night oxygen levels tested but I've wondered if I should ask about it. During the day I'm usually at 100%, and I rarely dip to 98%...only lower on one occasion. I do have a very deviated septum though, and I've wondered if it could be causing problems...
  20. J

    Sleep Issues - Is This Common with CF?

    Does anyone else feel that the amount of sleep their body demands of them is just... way too much? I understand that getting plenty of sleep is especially important with CF, and I have been on antibiotics lately (the infection seems minor), but it just seems like way too much sleep for anyone to...
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