Jump to content


  • Posts

  • Joined

  • Last visited

Everything posted by Paula1025

  1. This really hits home for me!!! Couldn’t have been put any better than this. Thank you MOx!!!
  2. I did wean myself off all stills meds. Next cycle I will try with the meds to bust. Just was so unsure and at the moment the beast is way worse than my messed up body so all I can focus on was stopping the cycle at any cost. Today bust #2. And tomorrow I’m going back on the stills disease med regimen. I keep asking why me this week. Just got To keep swimming!!
  3. Hello, I’ve been suffering unilateral headaches since high school, never knowing what was really going on except it hurt like hell. I graduated in 2004 and In 2009 I finally got a diagnosis of CH. way to long if you ask me but not one neurologist knew what was wrong. I decided to reach out further and find a headache specialist not just a neurologist. Dr. McGeeney actually found me in a exam room explaining all my symptoms and took on my case. It was the very first time I felt I was believed. And ever since then I have tried everything possible to get through this disease. In 2015 I had a bad cycle and found Clusterbusters. I thank each and everyone of you for keeping me alive and to better understand this evil disease. I don’t post often but I read a lot.  Thank you 

  4. Yes I have O2 and sumatriptan injections. But the best way for me to beat the beast is through busting. But yes this makes some sense that the meds for stills would block effects of mm. Yes time to see the Dr. I think I will just need to taper off the prednisone over the next few days and try to dose next week again and until then I’ll fight like hell to win!!!!! Thanks , paula
  5. Hello, I have a question? I have CH and I also have AOSD ( adult onset stills disease) I take 10 mg prednisone daily, vit d2 50,000iu weekly, folic acid for 6 days because I take methotrexate once weekly. My question is I am a episodic CHer I have been in remission for 2 1/2 years thanks to DR. McGeeney for rescuing me back in 2009. I went to Boston neurology because it was my final hope to know what was wrong with me and as I was telling a young woman my symptoms he over heard me and walked right into my room and saw my droopy eye and and runny nose and said he would like to take my case and we talked for like a hour and since then I have been able to manage my attacks and cycles. Now that I have been diagnosed with this new disease on top of CH I don’t know if my medications will counter act the benefits from dosing to stop this cycle. I’ve have 9 attacks in 3 days and I just got my dose delivery but I’m afraid to take them and not know if my medication will affect me. Please if anyone knows about this I could use advice I tried to google it and there isn’t to much as mm are illegal and there are no studies of it mixed with methotrexate. Thanks Paula.
  • Create New...