SandyC Posted February 14, 2011 Share Posted February 14, 2011 Kara Ann, my sympathies also. As to rc seed, when you first begin to bust you may (I most certainly did) experience some pretty nasty hits, which I aborted only with Red Bull and welder's 02. That first cycle trying the busting method with seeds wasn't nice, but it was extremely SHORT! My cycle completely stopped/ended in less than two weeks - unheard of before. I rent my tank from a welder supply co, bought my regulator from e-bay (only goes to 15 lpm, and my mask through CH.com (wasn't the Opti-mask back in those days). My tank rents for $56 per year, with about $17 fill up. Not a real problem right now with the low lpm reg and no Opti-mask, but I haven't needed either one in over four years. Total PF (jeez, where's my piece of wood to knock on??) Sandy Quote Link to comment Share on other sites More sharing options...
Laura Ann Posted February 14, 2011 Author Share Posted February 14, 2011 Thanks Sandy! So glad you've been PF for four years!!! Do you maintenance dose? If so, how often and how many seeds? Quote Link to comment Share on other sites More sharing options...
Laura Ann Posted February 18, 2011 Author Share Posted February 18, 2011 Tried 50 seeds Tuesday night, slept like a baby. Wednesday night, however, was a night from hell. Hit at 10:15 until, well, still sore now. Oxygen didn't work for this hours-on-end K9. Now I feel like someone beat my head with a bat, my eye hurts just to see. Is this really normal to get hit that bad the day after seeds? Not sure if i should stop or if i'm just at a peak with my CH? Next does to be Sunday, but I'm scared! Any advice? Quote Link to comment Share on other sites More sharing options...
Dallas Denny Posted February 18, 2011 Share Posted February 18, 2011 Hi Laura Ann, Unfortunately, I'm afraid its not uncommon for folks to suffer post dose hits from HELL.......the good news is that after 2 or 3 doses it generally gets better!!! Sending PF thoughts and wishes and good luck!! Dallas Denny Quote Link to comment Share on other sites More sharing options...
Laura Ann Posted February 18, 2011 Author Share Posted February 18, 2011 Thanks Dallas Denny! That's what I'm hoping. The day is getting better. Thinking the weather has something to do with it too. Whenever the weather goes from 30's to freezing to 60's, i get hit hard too. 3rd dose Sunday!!! Quote Link to comment Share on other sites More sharing options...
kaboom Posted February 19, 2011 Share Posted February 19, 2011 Keep at it, Laura Ann. CH's tend to get ticked when you rattle their cage. It can be very difficult to tough it out, but hopefully you'll see some improvement soon. Drastic changes in the weather seem to increase CH activity for me, too. Keep us posted! Quote Link to comment Share on other sites More sharing options...
kaboom Posted February 19, 2011 Share Posted February 19, 2011 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.    Quote Link to comment Share on other sites More sharing options...
Laura Ann Posted February 22, 2011 Author Share Posted February 22, 2011 That's awesome! So glad everything went well. Thank for your well wishes to me and my dad. Quote Link to comment Share on other sites More sharing options...
Laura Ann Posted February 23, 2011 Author Share Posted February 23, 2011 I think I did a stupid thing. Busted with 50 seeds Saturday and did pretty good through the weekend, a few daytime hits that went away with Red Bull. Been so scared the pain would come back twice as bad (like when I get off a pred tapper) I ate 2 Hawaiian seeds. Took after my co-worker who accidently ate 2 seeds last week. (Brought them into work to try a staple remover to remove the shell). They were sitting next to my trail mix and she accidently took those seeds when she reached for trail mix. Let's just say she had a great day at work. Anyhow, last night was a nightmare and out of oxygen. Have been calling insurance company about my script for oxygen, new company so they wanted to review my file from HA dr. Still haven't been approved for the oxygen tanks, someone is to call me today. They approved me for a concentrator, but when I told them to read the script it's for tanks, they said they would review everything again and call me back. Next step, welding oxygen. Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted February 23, 2011 Share Posted February 23, 2011 Laura Ann, Firstly I almost laughed out loud when I read your coworker ate two seeds by accident. I can't imagine that chewing them up is pleasant. I can barely get the stuff down when ground and water soaked. yuckkkkk... (but hey, seeds work!) O2 is simply put, a life saver! You definitely want the tanks, they're cheaper and better. (I tried a concentrator and was big $, and didn't put out enough oxygen). Good luck with your O2 script. It hurts me to see over and over doctors and insurance companies balking at the #1 easiest, safest, simplest, least side effects etc. etc. treatment. If you were near me I'd be happy to drop a tank off for ya. Best wishes, Jeff Quote Link to comment Share on other sites More sharing options...
Laura Ann Posted February 23, 2011 Author Share Posted February 23, 2011 Yea, she was feeling pretty good and said they weren't too bad. This is the second battle I've had with an insurance company to get the correct oxygen script filled. Last year was terrible too. Told the lady on the phone that I was going to come to her house 5 times a night while she was sleeping and stab her in the head and try to pull her eyeball out of her head because that's how I feel and her lolly-gagging was not helping me. Bottom line, I'm sick of doctors who "can't do anything more" and insurance companies who don't know a damn thing about anything. Sorry just need to vent. Quote Link to comment Share on other sites More sharing options...
CHfather Posted February 23, 2011 Share Posted February 23, 2011 Laura Ann, you just have to keep after the insurance people (is there someone who could help you with that -- it's just so hard fighting these battles yourself while you're suffering). I might have already said this to you, but I would immediately send them these two articles (fax; send the links; whatever). They're from top journals. The first one proves that high-flow O2 is an essential CH treatment; the second shows how often O2 is not provided or provided wrong. They both make it clear that a lot of suffering results from wrong O2 prescriptions. “High-Flow Oxygen for Treatment of Cluster Headache” Journal of the American Medical Association http://jama.ama-assn.org/content/302/22/2451.full “Inhaled Oxygen and Cluster Headache Sufferers in the United States: Use, Efficacy and Economics: Results from the United States Cluster Headache Survey” http://www.docstoc.com/docs/62904898/US-Cluster-Headache-Oxygen-Survey-Early-View-Online-Publication-HEADACHE If you want to be more of a nuisance about this, you could google a phrase like [high flow oxygen for cluster headache] and just send them a reputable article (WebMD; ScienceDaily; etc.) every hour or so. A concentrator is definitely next-to-useless, if not completely useless. It can't get to a high-enough flow (the regulator is internal); it's not pure O2; it's noisy and bulky. Could you (or someone on your behalf) also go back to your doctor and try to have him/her intervene? Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted February 23, 2011 Share Posted February 23, 2011 Laura Ann, I'm completely right there with you on your feelings for the Dr's and Insurance Companies. Venting here is fine, you're in good company! I've no doubt that many on the site have been in your shoes as well. Your best bet might be to print out the following two articles and fax or send them to your oppressors. “High-Flow Oxygen for Treatment of Cluster Headache” Journal of the American Medical Association http://jama.ama-assn.org/content/302/22/2451.full “Inhaled Oxygen and Cluster Headache Sufferers in the United States: Use, Efficacy and Economics: Results from the United States Cluster Headache Survey” http://www.docstoc.com/docs/62904898/US-Cluster-Headache-Oxygen-Survey-Early-Vie... Good luck and wishing you PF times ahead! Jeff Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted February 23, 2011 Share Posted February 23, 2011 CHFather, you're a good man! You beat me to the post. Always glad to read your posts! Jeff Quote Link to comment Share on other sites More sharing options...
CHfather Posted February 23, 2011 Share Posted February 23, 2011 : Same here, Jeff. Quote Link to comment Share on other sites More sharing options...
Laura Ann Posted February 23, 2011 Author Share Posted February 23, 2011 Thanks guys! I've already put calls into the doctor's office. They are doing what they can on their end. From what I just learned, based on my plan, they will not cover oxygen tanks until I meet my deductible ($500.00) for the year. Guess I got to find another solution, welder's oxygen I guess. Maybe just buy my own and find a place to fill/refill? I'll be hitting the 4th week of this cycle on Friday. If this cycle is anything like last year's, it will be over by the weekend. The seeds were (are) working good, but afraid I over did it Monday with the Hawaiian seeds. Supposed to dose on Thursday with RC seeds. Not sure if I should. My mom had CH, although back then she was diagnosed with migraine. She would walk around the house at all hours of the night in pain. My dad said that she had horrible ones for about a week and then they were gone, never to return. I think it was menopause that stopped them, he said after menopause she never had a migraine, or cluster, again. Quote Link to comment Share on other sites More sharing options...
ThatHurtsMyHead Posted February 23, 2011 Share Posted February 23, 2011 Laura Ann, Nothing says you have to use your insurance. If you can get the script for O2 call your local medical supply company and see what the 'E' tanks cost. Then call a welding supply company and compare rates. (Make sure you compare like cubic foot tanks, as each use a different type of tank) Jeff Quote Link to comment Share on other sites More sharing options...
Laura Ann Posted February 23, 2011 Author Share Posted February 23, 2011 That's a great idea! Can't afford the $500 deductible and the $417.00 per month I pay for health insurance in one month, gotta find a different health insurance company. Had BCBS four years ago then the firm changed to a different company, and now we all have individual plans, no group coverage. Quote Link to comment Share on other sites More sharing options...
Laura Ann Posted February 25, 2011 Author Share Posted February 25, 2011 So, had 60 RC seeds last night, slept good. Tuesday was a nigtmare and Wednesday I had a K9-10 for about an hour. No oxygen. Went to sleep after and slept until 5 a.m. with a k3-4 for about an hour. This is my 3rd bust and hoping it will be my last, but today I have tingling in my head on the same side i get clusters. I've read many threads here, and just wondering if it is a good sign to have the tingling and no HA. (last week I was getting hit at work at a K2-3 for a couple hours and since Tuesday none). I'll bust again regardless of HA's or not next Thursday. I'm hoping my cycle is ending its peak (four weeks today since it started). They last 4-6 weeks. Quote Link to comment Share on other sites More sharing options...
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