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Everything posted by kaboom

  1. Thanks for starting this thread, Jeebs! I started this yesterday and will keep you posted:
  2. Definitely happier and more laid back. Happiness. I'm able to enjoy life again, rather than barely exist. Purpose. I'm able to work. I'm able to do what I love the very most -be a mom. Healing. Treatments have helped me to work through, accept, and move on from past traumatic events. I'd love to find a counselor who incorporates hallucinogens with their sessions. Reduced anxiety. If I can cope with CHs and have some control over them, I can cope with anything life brings my way. Bring it. BTW - Great post, Ricardo!  ;D
  3. When I read your post I actually had to walk away from my computer for a few minutes just to compose myself. My heart also shares feeling of overwhelming gratitude for the person that guided me here, Bob W.. Thank you so much for sharing your story with us.
  4. Both of my girls will be coming with me. Only my older daughter will be attending the conference. The youngest will be doing what she loves - hanging out in the room watching tv and ordering room service - while we attend. It will be fun!
  5. Any suggestions on items to donate? What's been popular in the past?
  6. This family understands the feelings of desperation and hopelessness that are caused by CH's. Please never feel like you are complaining. Sometimes we just need a place to vent and gather ideas.  When the CHs are relentless and it seems like there is no end in sight, it's important to know that it's possible for things to get better. Like many others on this site, I have had a drastic improvement in my CCH by using alternative treatments. I'm able to live life again rather than barely exist. We're all here to help each other cope - to offer encouragement and support. Should you decide to try an alternative, this site contains a wealth of written information.  Feel free to ask questions. Â
  7. kaboom

    "The Beast"

    Very disturbing - you did an excellent job. I've missed you, AO. Â
  8. You must deny your feelings, Dan... Ron would be heartbroken.Â
  9. Welcome Richard! The CH - support you will find here is nothing short of amazing. I've had CH's for close to 20 years - the last 8 chronic. Out of hope and out of options, last summer I desperately resorted to psychedelics. My only regret is that I didn't try them sooner. I still have CH's, but doing a "treatment" a few times a month has drastically decreased their intensity and frequency - to the point where I'm now able to work full time and enjoy life again. I even have some PF days! We're here to help - let us know if you have an questions.
  10. I like the part when you freaked them out and had to peel them off the ceiling.  ;D Thank you Dan, Lee Ann and Danielle!Â
  11. Welcome, Arcan! So sorry to hear you were diagnosed with CH's - but glad to hear you were able to get some 02 and found this site. CH's can be very frustrating because there are no clear cut answers to predict if/when they may get worse or if they will turn chronic. My CH's began as episodic when I was around 20, then about 8 years ago they turned chronic (I'm 39 now). But, this certainly doesn't happen to everyone. I'm very happy to hear you are getting some relief. I had used Verapamil and Imitrex injections for 11 years. Verapamil worked great at first, but I had to keep upping the dose because the CH's would break through. Eventually, I got to the point where I couldn't increase the dosage, I was very sick from the side effects, and was still getting sometimes 12 or more hard attacks per day. Imitrex worked, but it did cause re-bound CH's plus lot of nasty side effects. 02 is the best abortive for me. A non re-breather mask and a high flow regulator is essential. CH Father has done a fantastic job putting together the details in the link he posted above. Have you considered trying alternative treatments such as RC seeds? Some have found that these will reduce or eliminate a cycle for them. There are lots of amazing supporters here that truly understand the pain of CH's and will help answer any questions you may have.  Â
  12. The anticipation is killing me! Not only about "Dan, Dan our CH man!", but what did our fashionable supporter, LeeAnn, wear?!? Hmm...
  13. There is no right time to start busting when your chronic - you just have to go ahead and take the plunge. You will be so glad you did! I've been chronic for about 8 years and have had great success using these alternative treatments. This wasn't an instant cure for me - it's more of a process (I do a treatment every 5 - 10 days) Things have improved dramatically for me. The pain and frequency of the CH's is much less. Some weeks I'll even get a couple of completely PF days! THAT is amazing! The only things I use for my CH's now are these treatments and 02 - no more injections or fistfuls of prescription medications.  I'm excited for you to start busting - I feel positive you will see an improvement! There is HOPE! Â
  14. Imagine a horse having a CH?!? Funny story, Pix! My ex-mother in law always insisted that my "migraine" would be cured if I used coffee/garlic enemas. ???
  15. So sorry your going through such pain and frustration. I really hope you're able to get an appt with a nuero soon. It worries me that you have concerns over how different this cycle is from what you've experienced during past CH cycles: both sides, pulsing, explosion from left to right, nausea.  "Now, this year it's back on my left side, but it starts differently. Instead of starting inside of my head behind my eye and temple, it is starting in the skin above my temple and then radiating in on the ENTIRE left side of my head. Usually if I put pressure on my head it numbs the top of my skull and 'seems' to alleviate the pain enough to make it bearable. This time, I can't touch the left side of my head at all. It feels like I just got hit with a hammer and bruised instantly." Since insurance coverage seems to be your GP's concern, have you considered telling her that you've decided to just pay out of pocket? (that way she doesn't have to fret over dealing with the insurance) You can always fight with the insurance later. Honestly, I've never had insurance coverage for 02 during the 12 years I've been using it. If you can get the prescription (I've had Dr.'s admit to not knowing what to write for the prescription - "02 therapy as needed for treatment of cluster headache 15LPM)", just take it to the medical supply place and tell them you don't have insurance coverage. The regulator and mask you buy and keep - the tanks you exchange (may have to lease) when empty for a full one (small charge).  I've specifically asked a doctor about welders 02 when he suggested I go this route (no medical 02 supplier in the town I recently moved to). He said there is no danger using welders 02 as it is just as pure as medical 02.  Agh, I don't blame you about never wanting to take another Topamax. This was one of the worst meds I ever tried for CH. Couldn't keep my balance/think/remember/talk.  Good luck with the seeds. You've got lots of supporters here to help you along the way. Â
  16. So sorry about the bad day. Knock downs suck! You're right though, they make us feel grateful for the good days that we are so fortunate to have. Sending you PF vibes!
  17. One regret I have is that I didn't try alternative treatments sooner. Who knows, if I had tried this back when I was episodic, maybe I never would have turned chronic. ? I certainly would have saved myself a lot of pain and $ that was spent on countless meds + doctors. Another thing to take into consideration would be detox. It would be easier to go ahead and give the alternatives a try before getting on several CH meds. Were you able to get the 02 script filled? Since I've had 02, it's very rare that I have to resort to an Imitrex shot. (last one was close to a year ago ) Wishing you the best!
  18. I was in a bad spot and messaged Bob W on CH.com. At the time, I had no idea who he was. Now I do. I'm so very thankful for his empathy, guidance and encouragement. It's infectious. The Clusterbuster family is truly amazing. Â
  19. Are you also prone to "regular" headaches and migraines? I see streaks/falling stars (mine are usually silver in color) prior to the onset of a migraine. Dizziness, delayed speech and brain fog also occur and sometimes continue last long after the migraine ends. Since beginning these treatments, I rarely have the pain of a migraine, but occasionally still experience the same above symptoms. Silent migraine? I've never actually turned green - although once during a strong treatment I felt like I was purple and green. You know the CH's are bad when you start turning into the Hulk.Â
  20. Hmm...now I'm starting to rethink my offer to him. ;D Just out of curiosity, did Hipshot prefer the petite M-6 , the lean E, or the full figured MM cylinder?
  21. Wonderful news! So glad your enjoying yourself. Everything does seem to come together when our head gets on track. I want chocolate cake!
  22. kaboom


    Welcome! Wow, 12 years of misdiagnoses? You have me topped! 02 is my #1 abortive. Prior to getting 02, I was an Imitrex injection junkie. They were effective for the most part, but the side effects and rebounds were horrible.  You'll find lots of compassion and support from this amazing group. I'm so glad you found your way here!
  23. Sorry things are so rough for you right now, Frustrated. Were you able to find the info you were looking for regarding detox and seeds? Detox is difficult, but it's a crucial step if you want to give these treatments a fair chance to work for you. Hang in there and let us know if you have any questions.
  24. Thanks for the well wishes for my Dad. He was released from the hospital last night.    The surgery was extensive (removed a large portion of his esophagus and some of his stomach), but the doctors said that they now consider him to be cancer free.  I'm so happy! The hospital sent him home with enough medical supplies to fill a warehouse, but what's funny is they forgot to have his 02 set up. Guess where my tanks are? I wonder if I'll get to be the favorite daughter now?  My thoughts and best wishes are with your family.   Â
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