Laura Ann

The same thing is happening to me! My 5th dose was Tues night and last night had HA for 2 hours at K6-7 and still sore. Last week was good, no post dose hits the next day, but a few days later I got a pretty weak one, about k-3. My cycle will be 5 weeks long as of Friday.

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.

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.

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.

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.

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.

That's awesome! So glad everything went well. Thank for your well wishes to me and my dad.

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!!!

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?

Thanks Sandy! So glad you've been PF for four years!!! Do you maintenance dose? If so, how often and how many seeds?

Oh, no! Sorry to hear. I'm new hear too (ECH) and the people here are WONDERFUL. So supportive, knowledgable and have great advice. Drank my first "rc uncola" last Thursday and today has been a good day. I'd give you some advice, but I'm far from an expert on it. Read the threads and post as many questions as you need. They will be answered.

Thanks to all of you for your kind words and support. So far so good with the CH's. Usually wake up to one but not this morning and all my day time shadows are gone. Still getting hit during the night and will continue with seeds, 50 this time. You guys are the best!!!! Kaboom: Praying for your dad to have a speedy and healthy recovery!!

Thank you for your concern, it's really appreciated! Regulator goes up to 15, i've noticed if i just let the shadows and k3-4's hang around and only use red bull, it will subside. Not sure if the stress of Friday was any factor. I have been taking care of my dad who finished radiation and chemo for esphogeal cancer. Took him to surgeon yesterday to schedule surgery when BAM, my poor dad got hit. Looks like cancer spread to his liver. That's why it is so important to me to stop this cycle, I need to take care of him, get him in for tests and appointments, etc. Hopefully tonight will be better, trying to be positive. Tuesday will be the 5th day and next does. Should I increase the amount of seeds? (tried 30). How do I know when to stop dosing, cuz i'm wondering if I should order more seeds, only ordered 100. Any advice would be appreciated.

Have the mask ordered and took 30 seeds Thursday. Clusters are starting a pattern of 9:15 p.m. and 11:30 p.m. and in the mornings when I wake up. Thursday night I drank the seed mixture and when 9:15 rolled around i had some shadowing and then tingling in the areas of the head with shadows. Slep til 11:30 and woke up with no pain. 5:30 a.m. woke with K5, fell asleep after it subsided and 7:00 woke up with K7-8 for half hour. Last night (friday) was bad. 9:15 p.m., 11:30 p.m., 1:45 a.m., 3:00 a.m., 5:20 a.m. (no oxgyen needed), 7:30 (no oxgyen needed, stayed in bed). Wondering what's going on. Hoping I'd have some relief the day afer seeds. REALLY don't have time for these darn clusters now.

Have the mask ordered and took 30 seeds Thursday. Clusters are starting a pattern of 9:15 p.m. and 11:30 p.m. and in the mornings when I wake up. Thursday night I drank the seed mixture and when 9:15 rolled around i had some shadowing and then tingling in the areas of the head with shadows. Slep til 11:30 and woke up with no pain. 5:30 a.m. woke with K5, fell asleep after it subsided and 7:00 woke up with K7-8 for half hour. Last night (friday) was bad. 9:15 p.m., 11:30 p.m., 1:45 a.m., 3:00 a.m., 5:20 a.m. (no oxgyen needed), 7:30 (no oxgyen needed, stayed in bed). Wondering what's going on. Hoping I'd have some relief the day afer seeds. REALLY don't have time for these darn clusters now.

Will get that ordered asap! Thanks

Thanks everyone for your responses and support. I'm using a rebreather now but will definitely need to check into the optimask and get it ordered. Red Bull after Red Bull (2 and a half) was chugged and sipped, actually took 10 mg melatonin and 2-25 mg benadryl and 15-20 minutes later, while awake, I was hit. It used to be if I breathed slowly and deeply, it was gone in 3 mins. Got to the point I just started crying just to relieve stress and anxiety building in me. Side note, seeds will be in my anxious little hands today.

Thanks Dan! I don't know if I should even bother. Had a horrible night last night and O2 didn't do a thing. K8-K9 from 9:00 p.m.-ish to 3:30 a.m.-ish. Pain would subside and come back stronger and then the lovely muscle spasms that would not let me go to sleep. At work now hoping my seeds come today and hoping my body will be too exhausted to give me any pain today.

Awesome, thanks. It seems like welders O2 is A LOT cheaper than what I will pay for O2 with insurance.

Thanks, but I live in the midwest and the temperature (with wind chill) is -13 today and for the next couple days. Not sure they would believe that story LOL!

I'm new here and have read many posts already and ordered RC seeds. Hopefully they will work! I have about 1/4 of an H tank left of O2, and think it will only last another week, if I'm lucky. I have insurance, however, it's new health insurance and having trouble getting my O2 covered (I'm told it could take up to 2 weeks to get it ok'd, ordered and delivered) In the meantime, I was hoping to get welder's oxygen, but not sure how to go about ordering a tank without being questioned by the supplier as to why I am ordering it. Any suggestions would be greatly appreciated.