iPain

It better have worked because that was surprisingly awful. Thirty minutes of nothing, one hour of slightly drunk feeling, then couldn't keep my eyes open and fell asleep. Weird dreams, up every couple hours. Several CH in the middle of the night of mild-moderate intensity, but I felt almost paralyzed and could not get up to go to my oxygen. Very late to work as a result. Regular headache and feeling very weak at the moment. If it worked, I'll throw away a day anytime. But, if it didn't, that was pretty uncomfortable. No CH since around 4 a.m., but that's pretty typical for me. They don't start up until the afternoon, and the biggies usuallly don't occur until late night/early morning.

Interesting. There's no question the hits are bad enough and are causing problems at work. It's time. But I used peppermint tea, not lemon juice. Didn't see your post in time. It's sitting in the refrigerator now. Also, since I've never had anything that in any way even remotely resembling a trip, the thought of a 12 hour long one kinda scares the crap out of me. Wouldn't mind an escape from this current life though I'll tell you that much. This is no way to live.

HBWR arrived today. It's day 4 of detox. I'm dealing with some fairly intense shadows at the moment, but I made it into the office. Do I wait one more day? How hard and fast is this 5 day rule? I'm really anxious to bust this cycle, and I'm praying it's bustable.

Thank you CHfather. I think I'm going to move to 50,000 IU and stay with the same fish oil and magnesium only for now and see where it goes. Right now, I don't know how I would be maintaining my detox without the ice pack. Wow, what a difference-maker for me. I know everyone has their thing, and I finally found mine. I love my ice pack. I highly recommend trying it to anyone out there suffering. The pressure of pressing it against your face along with the cold really seems to help me.

Looks like I fell out of the loop on the exact D3 regimen during my time away from the board. I am not sure what you mean by the daily lemonade/limeade thing. Would someone mind sending me to a post giving the exact regimen? I did a search and see plenty of discussion, but I don't see the exact regimen listed. I've just been taking D3, fish oil, and magnesium nightly. Will do the 50,000 today. Meaning no disrespect to my chronic brothers and sisters whose lives I can't possibly understand, but at what point do I start worrying that my episodics have turned chronic? My history is episodic once or twice a year for 1-3 weeks from the time I was 17 until I was 28 (misdiagnosed as migraines). At 28 had my first kip 10 during a 3 month cycle during which I almost lost hope for my life, and then I found this board. I'm now 30 and my episodes are occurring several times a year lasting up to 2 months. Now I've been in "cycle" for about 4 weeks. 3 busts have had no effect. Oxygen has lost its miracle effect and only sometimes helps. Same with red bull. I know it has been only 4 weeks and chronics would call that nothing, but the fact that nothing seems to be working right has me worried that my condition is taking a turn for the worse.

Clusterman, thank you so much for the advice. I've been on the vitamin d regimen for a little over a year. I've just been doing it daily, same goes for the fish oil and magnesium. I figure it can't hurt and might help, but honestly, I can't say the regimen has definitely helped me. I actually realized I haven't been taking the calcium anyway, so no need to drop it. You are correct that I am taking 10,000 IU daily. 50,000 honestly sounds a little scary to me, but given I'm currently wired after a double red bull/oxygen and still near hour long kip 7-8, I'd try just about anything. My last d3 blood test, which I had done in March had me at only 45.1, so I have some room to move. Also, I'm sure this is far from novel, but my wife brought me an ice pack to hold on my face during this latest episode. It cut the pain almost in half. Given my current desperation, it's always interesting to find relief in something so simple.

Night 2 of detox was my worst ever in terms of number, but severity has been somewhat tempered. Nothing above a kip 7, but I am having constant shadows and kip 4-7s lasting 20-90 minutes. I haven't had more than maybe 4 hours go by since yesterday at 2 a.m. without a kip 4-7. Last night, I was awakened at 12, kip 7, two red bulls and oxygen, couldn't fall asleep until 3, woke up again at 4, kip 6-7, tried oxygen only and it worked, back asleep around 5-5:30, up again at 6:30 kip 5-6, oxygen only, back asleep at 7:30, up again at 8:30 kip 5-6, oxygen and one red bull. Holding out ok so far since, but shadows remain. Oddly, my left eye will not recover. Usually within 30 minutes to an hour, it looks normal. It has been somewhat swollen, red, and tearing for at least a week now. Plus, I'm constantly sniffing and blowing my nose because my left nostril is constantly running. Everyone at work just thinks I'm sick. I just keep my door closed all day and am averaging 4-8 red bulls a day. I don't expect any responses, and I'm sorry to clog the board. But, like I said, what I'm mostly feeling is a loss of control due things just not working as well as they used to (or at all), and somehow writing about it makes me feel better. Praying I'm one of the few for whom HBWR works when RC didn't. Tuesday early evening will be bust night.....Monday evening if I lose my will, but NOT before.

I've done it with some success. Really hot or really cold shower has given me some success in the past as well. But those are only good for mid-day mid-level CH. I can't see myself being able to stay put enough to give any of those a shot when I'm awakened at 2 a.m. with a kip 8-10. Right now, best option is a much larger red bull than normal and oxygen. Detox begins now. Wish me luck all.

CHfather, thank you for the thoughtful reply. I re-read the oxygen materials to make sure I'm doing things correctly. I successfully killed a good sized CH last night by chugging 2 red bulls. Seems a bit on the ridiculous side, but it's better than the pain. I've tried the peppermint tea and also tried lemon juice before. Didn't notice a difference personally, but putting it in water with some lemon juice helped it go down smoother just by masking the taste. Seems HBWR may be more trouble than they are worth if their effectiveness should be no different than rc. Bottom line, seems I either got a poor batch of rc, or they just lost their effectiveness on me. I have to hope I have a different result with the HBWR. I know there are other options out there, but none of those are available to me at the moment, and it's my understanding that it would be at least a couple months if I tried cultivating.

Couple things: have people found that even oxygen, red bull, and trex injections lose their effectiveness at times? I did all 3 and was in kip 10 for 10-15 minutes and kip 8-9 for the remaining 30-40 minutes. I did everything right to abort. This is truly a mutant cycle. What I am suffering from now (beyond the pain) is a feeling of total loss of control. All the right answers aren't necessarily right anymore. HBWR is my next available option to try. I'm tapering down on the shockingly worthless pred so that I will be done after tomorrow. 5 days of detox has me busting next Wednesday. The seeds arrive on Friday. I've read the archives, but I feel like most people either go for the strongest busters or do RC. HBWR has seemingly been largely abandoned. I understand you must remove the entire outer shell with pliars or something similar, then take out the mushy inside and grind it and put it in water for 2 hours, then drink. I just want to make sure I'm not missing something. If anyone has successfully busted with HBWR and has some additional advice, I'm all ears. Thanks again to all.

pm i just sent to bobb that i figured i'd share with the group in case anyone disagrees with my plans and has a better idea: It happened. kip 10. 40-60 minutes of screaming, crying, pacing, eyelid swollen shut tearing, nose running, terrified wife. trex injection, oxygen, and after 15 minutes chewed up 2 percocets. would have swallowed a bullet if i had it and my wife wasn't there. i'm done with prednisone. this is the mutant cycle from hell. i'm tapering down to 2 tomorrow, then 1 the next day, then that's it. 5 days and i'm hitting the hbwr i ordered today.

Work in miami, live north of the city.

Decided not to give same batch of RC a 4th shot and considering your advice and the likelihood I'm more than half done with my cycle, I started the pred/verapamil late yesterday. Had a very rough night again, but feel pretty decent so far today. One day, I do think I need to try the other busting methods so I know what works best for me. Finally, it is true that I didn't really use RC as preventative. I didn't feel there was a real consensus on how often to use them. Basically. I have a kip 1-2 almost every day of my life regardless, they are usually short lived. The second I feel anything stronger, I bust. If others out there can suggest a better alternative to that strategy, I'm all ears. I personally hate the pred side effects and am not looking forward to the next two weeks, but it beats the beast any day.

To follow-up, I know this group is extremely skeptical of pred/verap, but based on past experience, I will have roughly 5 days pain free. It may hit very hard once I start to taper down, but the thought of 5 pain free days is pretty appealing right now. Besides, my cycles usually last about 4-6 weeks, and I'm approaching week 4. Plus, so far, no effect whatsoever from 3 busts. Granted, every other time I did RC, complete bust like it was a miracle. Nobody can tell me exactly what is right for me, but these are my only two options as I see it right now, and I would like to hear from those who have been there. Also, if I haven't said it enough before, I believe this message board saves lives. I can't say I would have ever actually killed myself, but until I found this board, I didn't know it was even possible to control the beast. I'm usually a very happy person. I just wanted to thank everyone again. You may not have techanically taken the bullet from a gun (I don't even own one), but you have metaphorically talked me off the ledge more than once.

I take an Allegra every day for allergies. That's the only medication I've been taking, and I've taken it for every other bust without issue. It's decision time. My new RC didn't get here yesterday, which means I won't see them until Tuesday with the holiday. So, in the past I have done between 40-80 RC. 60 seemed to be my sweet spot. I've done 60, 60, 80 so far. It's a 500 pack, so I still have enough. Any advice on what to do? I have nothing but RC or I have an unused pred script and Verapamil script. Those are the only two options before me at this moment. Thoughts?

Very interesting. Not an option at the moment because I managed to let my passport expire a couple months ago. Could be an option in the future, but it would take a while to renew. Thanks for the thoughts and well-wishes all. Right now my wife is asleep on the couch, exhausted from dealing with my not-so-subtle nightly sessions. I'm actually afraid to go to sleep. Red bull seems to no longer be a viable option for the current cycle. Oxygen is still available, and I'm now keeping an Immitrex injection at my side 24/7 in case of a kip 9-10. I know it goes against detox, but kip 9-10 means death is preferable.

Kip 8 in the middle of the day in public. Got a red bull. No help. Found a corner to pace and punch my eye for a half hour. Someone help me. I'm on the edge.

2 days until I can bust again. Ordered new seeds. Just had a kip 8, aborted with oxygen and red bull. I refuse to call it kip 10. I only had one of those. For 20 minutes, I wanted death. All I knew was pain. Didn't matter I have a wife that loves me and a steady job. I live in fear of another kip 10. Now exhausted from nights of pain and wired from red bull. My wife has that hopeless feeling in her eyes. Need to vent to those that get it. When you're in cycle, it runs (or should I say ruins) your life

I have not gotten any personal messages, so I assume nobody is in the South Florida area and able to help. I will order new RC now and hope that works. However, I've never tried any other busting techniques and am a bit soured on RC due to recent failures. If anyone has the ability to help me with new techniques in the short-term for me to try and determine its efficacy for me (regardless of where you are located), please let me know. I am reaching that desperation point.... My thoughts are with all presently dealing with this devil. I want my life back, I want to feel like me again....

All of my RC have come from the same vendor. It has always worked in the past. This latest batch is about 3 months old. Perhaps ordering again from a different vendor is worth trying. Pretty miserable at the moment. Barely any sleep for weeks. Work suffering, marriage suffering, you know the drill. Really starts messing with you when the things that used to work stop working.

Been a long time since I posted. I've mostly felt a good level of control over the beast since I last posted (thanks to all of you). Forgive me, but when I don't have the pain, I want to avoid even thinking about it, so I avoid this message board. I have a possibly irrational fear that if I think about it too much, I'll actually cause a new cycle. I have oxygen, Immitrex injections, Red Bull, and RC. I also do the Vitamin D regimen and Melatonin nightly. RC busted me in February 2012, April 2012, November 2012, and February 2013. I am just entering week 3 of my current cycle. Severe kip 7-9 pain nightly at midnight-2 a.m., 1-2 additional per day (kip 3-4) with shadows consistently remaining throughout the day. So far, 3 courses of RC have not busted me (I've only needed more than 1 dose once). Considering pred taper and Verapamil even though I had only limited success with it in the past unless there is someone in the South Florida area that can help get me out of this cycle. Please send me a message if you think you can help. My best to all.

Just got a call that my oxygen will be delivered tonight! I never thought I could be so excited for OXYGEN. That seems to be the one consensus for CH sufferes though - get O2. I've actually managed to esacpe any major CH all day so far, but have had fairly significant, annoying, and draining shadows all day long. Has anyone had success in aborting day-long shadows with O2 or that really more for CH attacks? Thanks!

Also, kind of interesting. He gave me a sample of Sumavel DosePro, which is a needle-free injection of sumatriptan. I always thought needle-free and injection were contradictory, but appanently not. Just nice to know what is out there.

Pretty comfortable with the new neuro. Prescribed oxygen and overall seemed pretty knowledgable about CH. Working on getting my O2 ASAP. There is one aspect I'd like some opinions on, however. I know how much of this group feels about pharmacuticals, but I'm still interested. Right now, the only thing I'm on is 240 mg of Verapamil once a day extended release. He wants to double the dosage to 480 (1 240 mg ER tablet twice a day) and he wants to put me on Depakote. I don't know anything about Depakote really. He wants to do bloodwork to check my liver function with blood work before I start taking Depakote, so I have some time to figure it out. Also doing an MRA (previously had MRI which was normal) just to rule out aneurism....though he said I'm "textbook" for CH. Anyway, anybody have any thoughts on Depakote? Thanks!

Thanks guys! Glad you enjoy the name. I'm about to head out to a visit with a new neuro I got off the ouch list. Wish me luck!