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  1. Today
  2. This is something I've been kicking around for years while in cycle trying to tame the beast. Whenever a cycle would start these words would pop into my mind "time to dance with death" as each experience truly felt like a tango with my mortality. Can I get through this? Can I take the pain? Can I make people understand this craziness that is my life? Do I even want to go on? Wrapped in the deep embrace of unimaginable pain, I'd waltz through the agony. With every searing neuronal shock, I'd spin. My screams where the music as the tears flowed. I'd dance with death to the drumming of my racing heart and the explosive pain in my brain. Stuck in this box step 123-123-123 repeating to myself "release me....release me". Just as the ordeal felt like it would swoop me away leaving a lifeless body, setting me free from this curse forevermore with the extinguishing of my heart...the dance was done. Left as a shell of who I was, battered beyond repair, a scared quivering woman who's life was run by fear and the anticipation of the next attack. Death had released me from our waltz but not for long as we all well know, it will be back to consume us again. It's that time of year folks, my cycle has started and with it, has brought my life to a screeching hault. The thought of losing everything and the constant rebuilding is daunting to say the least. It's been a week since the beast has arrived, leaving me homebound and struggling to explain my condition to my new employer and loved ones. I feel a creative outlet would help so I've thought of writing about my experiences (the good, the bad and the downright ugly) to help release some of the emotional burden this condition causes. I wish you all a beautiful pain-free day.
  3. Yesterday
  4. Forgot to answer the stopping verapamil question. It won't hurt to stay on it while doing the reg but if you feel the verap is not working you could slowly ween of it (maybe consult your Dr. First). I'm on 480 mg of verap and do the D3 at the same time. The D3 has by far given me more relief. GL!
  5. Last week
  6. Hi Shaun, When I first started the D3 regimen Batch had suggested 100,000 IU a day for 12 days and then drop back to a maintenance dose of 15,000 IU/day with the oil-based liquid soft gel vitamin D3 formulations or 100,000 IU/week with the Bio-Tech D3 50 50,000 IU water soluble vitamin D3. Additionally you will need to take all the co-factors see below. Here is a copy and paste from some of his protocol overview and the link if you want to sift through it as well: https://vitamindwiki.com/Cluster+Headaches+treated+by+high-dose+Vitamin+D%2C+etc.+(interview+and+transcript)+-+Feb+2022 Hope this helps get you started!
  7. Could someone please point me in the direction of Batch's @xxx vitamin D3protocol for managing clusters? Specifically the loading and maintenance dosing. I'm about to start the regimen for the first time and want to make sure I'm doing it correctly. I've been dealing with this for 13 years and kind of at my last resort and hope this will help. Also should I stop taking verapamil while doing this? All help will be appreciated. Thanks Shaun
  8. Her dog friends come by to visit her at her deluxe mobile accommodations! It'll be great day when she decides she's ready to exit the vehicle and do some park roamin'. She's a beauty, nice gray muzzle and all.
  9. Nope it sure can't! We take her to 3 or 4 parks a day so she gets some out and about time even if she isn't willing to get out of the car yet. We have the back of the rover set up just for her. She is an old gal but deserves her last few years to be happy ones.
  10. Earlier
  11. A lil' boot can't hold Abby back! Congrats on somehow making it through to the real bed promised land! I'm familiar with the bed-ramp-for-dog routine, and it's nice when you can occasionally decommission the contraption, "raise the drawbridge" style, at times when no dawgs are welcome. That sure can peeve them off though.
  12. Hey @Bejeeber, She is finally out of the cast as of last week and into the boot! She is getting around on it pretty darn well. She will have to stay in the boot for at least six months but it is so much better than a cast. She now uses a ramp to get on our bed. Yes.... a REAL bed! We are big timing it now days
  13. Amazing. I’ll get in touch. Thank you. ❤️
  14. Here is the info for Air liquide in NS Canada Not sure how close you will be to that but I just did a google maps search of oxygen supply companies. Air Liquide Address: 1030 Barker Lane, Westville, NS B0K 2A0, Canada Hours: Closed ⋅ Opens 8 AM Phone: (833) 935-3252 Province: Nova Scotia
  15. Hi funtimes, thanks for this. I’d welcome any advice to be honest. We are travelling to Nova Scotia in Canada.
  16. I have called travel agencies and asked them to recommend a medical supply company they use for travel to areas. They supply wheelchairs walkers and oxygen needs to travelers all the time and can maybe hook you up with a company.
  17. Hello everyone. I’m writing on behalf of my husband who is currently next to me in bed battling through another headache. We live in the uk and are travelling to Canada on Thursday. We’d hoped the clusters were on their way out but I’m nervous about arriving in Canada with no oxygen. My cousin who we are visiting works for the fire brigade and has kindly sourced us 2 small cans. Which would potentially do 1 or 2 headaches. Can anyone advise us on how to get oxygen overseas? Apparently it’s easy to source in Europe but we might have to pay for it privately in Canada. Air liquide currently supply us in the uk. My next thought was to call them directly in Canada? Any advice greatly received. xxx
  18. Please. Tell us Abby has recovered from all the tendon drama and has gotten back to a normal level of hogging the bed all night.
  19. Most of 'the wall' has that same key through a lot of it, only noticed because this was mentioned. Also the album in the post had me thinking of floyd right off the bat, specifically the wall with the interspersed conversations and phone calls that show up in parts of the wall. I do feel it captures some of the nerve jangling 'waiting' feeling and the dread, listened to the clusterhead full album a couple times now and it does really evoke a lot of the same feelings I get. So, very well done.
  20. Thank you Michael for sharing your amazing experience! It gives people so much hope. To your continued excellent health, Jimmy
  21. We will kick off on Thursday evening with a cocktail reception and registration. Following will be two full days of presentations, workshops, and sessions, (Friday and Saturday), and there will be a half day of presentations and discussion on Sunday. We will finish at around noon on Sunday.
  22. Everything that @CHfather said... I have had my CCH switch primary sides on several occasions with the first being after sinus surgery. I wouldn't say it's a good thing, just a change. Currently I am primarily right sided but there have been events that include the left side. I wish you all the best for finding PF days and nights.
  23. Is there a rough agenda regarding timing? I thought I had seen one previously - starting Thursday evening and finishing Sunday at noon. I am working on travel arrangements for this conference and trying be be a cost conscientious. Thank you!
  24. For some people, side-switching might indicate a change in the cycle. For others, it's just another thing that happens. It's not common, but not super-rare. What jon said -- you want oxygen for stopping your attacks. The more you use the injectable sumatriptan, the worse things are likely to get -- more, longer attacks, longer cycles .... And prednisone should be limited to once a year (a taper of two or three weeks). And the amitriptyline is, indeed, probably useless. Get oxygen (Read about that and other things here: https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/) For now, split the injections when you use them: https://clusterbusters.org/forums/topic/2446-extending-imitrex/ Start the vitamin D regimen, which has helped many hundreds, if not thousands, of people with CH: https://clusterbusters.org/forums/topic/1308-d3-regimen/ Consider busting: Read about it at the end of this file -- https://clusterbusters.org/forums/topic/6213-basic-non-busting-information/ -- or by cliclking on "New Users -- Please read here first" at the top of any page (in the blue banner).
  25. ...OXYGEN!!?....dump the amitriptyline, worthless
  26. Hi folks, I was diagnosed with Episode Cluster Headaches about 6 years ago. I’m currently in the middle of a cluster and are taking verapamil, prediscone, injectable sumatriptan amd amitriptyline. My headaches this cluster have been on the left side of my head. Today, they moved to the right side. Is this a good sign?
  27. Devonrex, Yes, I hear it there. In the beginning. Time is bad for that frequency. The guitar hits it a lot! Vibrates in my head in a bad way!
  28. Goodbye blue sky immediately came to mind, the sound of the 'plane' at the beginning and throughout that recording
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