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ClusterBusters

jackieblue

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About jackieblue

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  1. jackieblue

    How did it all start for you ?

    21 years old in 1986. Thought I had a toothache. Was diagnosed quickly but was prescribed nothing. There was no medicine and little knowledge. There is more knowledge and still no medicine to really make these things disappear. I am episodic, every 1 1/2 to 2 years for 8-12 weeks. Since busting, lasted 3 years. Would have been longer but got lazy and comfortable, forgetting to bust. Thank goodness for this website and the wonderful people who live here. What I dreaded in the past is now a completely manageable illness. There are a few rough patches, but a totally different life than years ago with traditional meds.
  2. jackieblue

    Here I go again!!!

    Still PF here. Birdman and I are on the same circadian planet. Hope all others are finding relief. Hugs!!
  3. jackieblue

    This is hell!

    I just read your post and am so happy for Jan and you! Tell him that I know things are going to continue to get better for him because he has an angel by his side.
  4. jackieblue

    a potential new option

    I just spent the morning reading this entire thread. Although I currently busted out of an eight week cycle with the help of seeds, M, 02, and the great people here, I am still so intrigued by new information. Les described our condition so clearly, like no doctor I have ever seen. His writing style is a gift and his insight is so inspirational. He is honest, especially when it comes to the cigarette connection. If nothing else, the pain is much less severe when smoking is avoided. I am taking the vitamin reg and will not be smoking anymore. I was casual and inconsistent with smoking anyway. On and off for years with no real addiction. Just did it to relieve stress, when having drinks, or when others were indulging. I would love to know Les' suggestion with licorice root when it comes to maintenance.
  5. jackieblue

    Someone Help Me

    Hi Michael Tell us more about yourself. You have reached the most supportive and resourceful place on Earth. Jackie
  6. jackieblue

    Here I go again!!!

    Thank you for all of your support. This cycle is officially over. Short one in retrospect...8 week of hits. I promise to stick with a maintenance schedule this time. I got comfortable with my 3 year remission. I also promise to check in here more often to help those who have been here for me. My first charitable donation for 2013 is being made here... may a cure be in our sights! Happy New Year, Friends!
  7. jackieblue

    Here I go again!!!

    I also think I am nearing the end since I am sleeping through the night with a little activity upon waking. Busted with M 11 days ago and have not had sleep hits. Sipped on some Coffee Patron on Christmas Eve with no headaches. Had a mild headache yesterday. Took 85 seeds last night. Slept well and feel pretty good this morning. Neck and shoulders are really sore. Perhaps a massage today? I have my fingers crossed. Happy 2013 to All! May this year bring miracles to our cause.
  8. jackieblue

    This is hell!

    Great news for you both! Things seem so much better than a few weeks ago. I also am improving but not out of the woods. I slept all night and woke pain free. I was so happy getting ready to open presents and then I was visited by the "buzz killer". It was mild and knocked down with O2 quickly, but a clear reminder that things are still not normal. Tell Jan that he has a friend in the States who has faith that the new year will bring many more pain free times. You are his rock. Merry Christmas! Jackie
  9. jackieblue

    This is hell!

    I'm praying and pulling for you!
  10. jackieblue

    Gaba

    Do you mean Gabapentin, the prescribed medication?
  11. jackieblue

    Here I go again!!!

    This is really great news! Since you are feeling some minor activity, you may want to bust one more time. I busted Thanksgiving and had 2 glorious pain free weeks. I was convinced I was done with only minor activity. Then out of nowhere, it returned with a vengeance. I don't want that to happen to you, even though you belong to the evil empire ;D Seriously, when my cycle ends, it is gone like it was never there. No shadows, nothing. Just an idea. If you feel confident, then go with your instincts. I am cheering for you!
  12. jackieblue

    For all supporters of sufferers

    I also feel that this is the only sane place during cycle. Everything I have learned has been from here and our sister site. The medical field has been a waste of time. We are all learning as we go and eventually it will all be figured out...leaving the docs and insurance companies in the dust. I did come to Chicago a few years back, but only attended the conference for one day. I met a few people who were really nice, including Dr. Andrew and Bob. I really want to attend, but September is tough being that it is the beginning of the school year. I'm sure I can do Friday to Sunday if I plan early enough. I am so tired and have to work at 8:30 am but don't want to close my eyes. It is 1:20 am and I am actually contemplating staying up. That can't be good either. Hugs to all!
  13. jackieblue

    For all supporters of sufferers

    I am so frustrated with my family and friends right now. I feel that, although they all want me to feel better, they are inconvenienced once again. Yes, my husband goes for my 02 refills and my mother calls every morning to ask how my night was, but no one is actually trying to do what I ask. Knowing for 20 years that sleep is the enemy for me, my husband still harps on me to go to bed earlier, brought me a $150 pillow home the other night so I can sleep even deeper, and told me to put on really comfortable pajamas. He them proceeds to rub my back and tells me to stop thinking about them and they will go away. Last night, he said that I should read a book at night instead of being on this website because all I do is live and breathe these headaches. He has been to the doctors and watched cycle after cycle, but he is a "know it all type" and always has a new suggestion. "Wear my CPAP, take seeds every night since they make you sleep, stay home from work and relax/nap, etc". I asked him, as well as my whole family, to be very patient with me. I know I am being short with them because of the lack of sleep and pain at night. While they sleep, I am in hell. I asked if they could please not offer any suggestions, but rather be a sounding board for me so I can let off a little steam. I cannot take this out on my prek children at school or co-workers and I try not to lose my temper at home, but this is impossible at times. So I apologize before hand and tell them I love and appreciate them, but I only need them to try to be understanding. I still go to work, take care of the house, provide some meals, get them everything they need, and am preparing for Christmas. They still snap at me, gang up, and make me feel like I am a crazy person. I am not perfect, but I am doing remarkably well for what I am going through. I have not inconvenienced them in any way, I don't bother them in the middle of the night, and I try to live as normally as possible. I don't need for them to do anything for me except be patient and understanding. My best friend just called and I told her how badly I am feeling. She said everyone is only trying to help and I need to be more understanding. She said that I need to be more patient because I am putting them through a lot. When I mentioned the fear of sleeping and my husband with the early to bed comments and pillow thing, she told me that I am not thinking rationally because of the lack of sleep and there are a lot of worse things going on the world. I am sorry, but I expect my husband and life long friends to know my disease by now. I certainly would not cook him up a beautiful dinner of steak, shrimp, and ale while he is suffering from his gout. I get that they all want to help but I am crying out for specific help and they are all unable to do this. Although I appreciate you all here at our second home, I am feeling really all alone right now. :'( :-[ :'(
  14. jackieblue

    Do you/should I tell my doctor about busting?

    Thank you so much! The Edison neuro is right around the corner. Will give him a try.
  15. jackieblue

    Do you/should I tell my doctor about busting?

    She was both of those. She was so condescending, treating me like a child fibbing about a " tummy ache" so I could miss school. When she tested my knee reflexes and had me walk two feet while she watched and told me what a good job I was doing, I almost walked out. I needed the 02 so I played along. Don't go to St. Luke's if you live near NYC. There are better places. I need to find one in Jersey.
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