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Topic: 2 weeks into new cycle, after 2 years off (Read 656 times) |
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jld
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2 weeks into new cycle, after 2 years off
« on: Nov 5th, 2007, 5:54pm » |
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Hi all,
What a great find. I remember the relief of just being diagnosed with CH around 15 years ago, after 1 or 2 episodes per year for maybe 5 years. Just knowing others had the same experience, and I wasn't going crazy was helpful in some small way. I searched for this type of forum then, and found nothing. I'm hoping to compare notes with some of you folks, as this current cycle seems to be different than the past few.
My pain is always on the left side with the classic symptoms (droopy and swollen left eye, stuffy/runny left nostril, etc). I currently use no medication/02, but head to the shower at the first sign. I have read that people try to relieve the pain with movement. I learned long ago, that any movement, while it provided immediate relief, would result in more intense pain within a few minutes. I have found that if I get into the shower with very warm/hot water, I can get some of the relief without getting over say a 7/8 on the kip scale... I try to stay as relaxed and still as possible, although some movement of my head is just uncontrollable. It's much better than beating your head with the phone (which I did early on)... Hopefully no one is using movement/pressure/blunt force as a form of temporary relief anymore.
Until now, I would only get 1 or 2 attacks per night during a cycle. The last few nights have the attacks reoccur every two hours. I took 4 showers last night, 5 the night before. I can usually get back to bed within 45 minutes, but will be up and in the shower in about an hour. If I try to just sit up on the side of the bed, it will continue to intensify. Clearly the stimulation provided by the shower is necessary. From the time the water hits my head to the peak intensity is only about 5 minutes, then about another 30 to 40 to finally dissipate.
Of course, now with the recurrence every two hours, this technique is no longer practical. I'm hoping for some advice on dealing with this new twist.
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vietvet2tours
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Re: 2 weeks into new cycle, after 2 years off
« Reply #1 on: Nov 5th, 2007, 6:09pm » |
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oxygen at 15lpm.
Potter
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artonio7
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Re: 2 weeks into new cycle, after 2 years off
« Reply #2 on: Nov 5th, 2007, 6:28pm » |
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Hello jid,
Sorry the beast found you once again. I would recommend going to your neurologist if you haven't been there for a while. After your neuro has assessed you ask for a RX for o2. There is some great info in this site regarding o2 as well as on the ouch site in the o2 users section. Potter hit the nail on the head.
I'm sure some others well join along shortly to lend some input.
with warm regards,
Tony
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Guiseppi
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Re: 2 weeks into new cycle, after 2 years off
« Reply #3 on: Nov 5th, 2007, 7:00pm » |
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The best plan is a 2 pronged approach.
1: A decent preventative. That's a medication you take to reduce the frequency and intensity of the attacks. I'm episodic like you, generally 2 cycles a year, spring and fall, 8-12 weeks. I use lithium at 1200 mg a day as my prevent. I'm in law enforcement so I'm limited as to what I can have on board and still work. Lithium has been my silver bullet! For dosage comparisons I'm 47, male, weigh about 190 pounds. Other common prevents are verapamil and topomax.
2: an abortive. You start getting a headache what now? Your first line abortive should be oxygen. I can abort a headache in under 10 minutes, often times less then 6. I keep an e-tank against the bed in cycle and don't even have to wake up all the way to abort a night time hit.
It MUST be used correctly or it's worthless. You need a high flow regulator, in the 15 LPM range, a NON RE BREATHER mask, nasal canulas are worthless. You must breathe only pure 02, no outside air no re breathing of your own air.
I also keep imitrex injectables on hand but only use those for the killers cuz they're expensive and I hate how they make me feel.
Get back to a neuro, we've come a long way on the treatment of these things. No cure yet but far easier to manage then in the dark ages!!! Print out some of the treatment info on the board and start working with your neuro.
For now try keeping some energy drinks on hand. Any containing both caffeine and taurine, monster, rock star, many can get relief by slamming one of those down at the first sign of a hit.
Welcome to the board, it's so awesome to interact with people who don't need a long detailed explanation of your proble! You're among friends now. 
Guiseppi
A side note, if you keep the tank by the bed, cut the strap off your mask. That way if you fall asleep and the tank runs dry the mask falls away and you don't suffocate yourself. Important for those of us who get nite time hits.
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DennisM1045
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Re: 2 weeks into new cycle, after 2 years off
« Reply #4 on: Nov 5th, 2007, 7:28pm » |
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Hi and welcome! I agree with the folks that have chimed in so far. O2 is an awesome weapon. Works for most hits when combined with an energy drink. Of course if you use an energy drink in the middle of the night you can forget about getting back to sleep They're best used during the day.
I too use Imitrex injections for the hits that just won't go away. I also use 9mg of Melatonin at night a half hour before bed. This wards off almost all of my night hits. Of course now I get them during the day but I keep O2 next to the bed, an e-tank in the car and one at work.
Anyway, you have a lot of reading to do. There are a lot more options now than in the past. Here are some useful links to get you started.
Treatment info: http://www.plainboard.com/ch/chtherapy.pdf
Oxygen info: http://www.ouch-us.org/medications/oxygen/o2links.htm
I hope your search brings you many pain free days and night (PFDAN)!
-Dennis-
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jld
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Re: 2 weeks into new cycle, after 2 years off
« Reply #5 on: Nov 6th, 2007, 10:26am » |
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MANY thanks to each of you! A site like this is so useful. I think there are too few of us to get enough attention to the problem in terms of funding research. It will be up to all of us to compare notes and spread the word to try and find a way to cope.
After reading this site yesterday I stopped by the store for a few red bulls (I had never heard of this as an abortive). My intense CHs occur only at night. My wife was concerned I wouldn't be able to sleep if I drank it  Anyway, 12:26AM came my first opportunity to try it. I wanted to try it solo, but couldn't hold out, and headed to the shower. I think overall, it cut the duration in about half (maybe only 20+ min). The intensity was a little worse, but I think that may have been from attempting to wait before heading to the shower.
Unfortunately, I had 2 more during the night. I decided that maybe multiple red bulls would be a problem, and just stuck to the shower alone.
Just curious if anyone has tried the shower, and if so, how it compares to other abortives. I find that if I am disciplined, and get in as soon as possible (which required training myself to wake up at the first sign, and not try to talk myself into thinking it might not be too bad this time), I can almost always avoid the kip 9/10 rides. I use a handheld shower head and while remaining as motionless and relaxed as possible, wave the water across my eyes and head. It seems to provide some of the same relief I get from moving/shaking, but without the incredible rebound in intensity.
I plan to try oxygen as many have suggested as well. I wonder if it can be used in the shower... God bless you all, and thanks again for the interaction...
- John
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black
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Re: 2 weeks into new cycle, after 2 years off
« Reply #6 on: Nov 6th, 2007, 11:00am » |
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hi john
i am using hot showers myself.usually only my head with hot water for about 2 min and then i sweep my head with a towel intensely(i find it lot better than rockin)i repeat this lot of times.next step is counterpain cream on back of the neck and on face with attention not to go inside the eyes and stare on a fan heater directly on face.of course all these are poor solutions the best is to get a good abortive.imigran is surely better and for o2 i am not the one to say as i ve only been on one use tank with poor results.does heat or cold makes u feel better?including weather on question.pf wishes
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Guiseppi
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Re: 2 weeks into new cycle, after 2 years off
« Reply #7 on: Nov 6th, 2007, 11:27am » |
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While I've never tried it, I don't see any reason why 02 couldn't be used in the shower!!!!
The good news is, if it proves as effective for you as it has for me, you can roll over on your pillow, fire up the 02, knock the beast out in less then 10 minutes, shut the tank down and be back asleep. As unbelieveable as it may sound it is that miraculous an abortive for many of us.
I'd still strongly suggest you get to a neuro and try out some of the preventatives, sounds like you're getting slammed pretty hard. Good luck!
Guiseppi
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jld
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Re: 2 weeks into new cycle, after 2 years off
« Reply #8 on: Nov 6th, 2007, 11:47am » |
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Hi Black,
As for the shower, it has to be hot. Cold seems to make it worse. Weather-wise, for me, the cycles almost always seem to start at an abrupt weather change. We had a cold snap two weeks ago, which coincides with this episode.
I'm pretty jaded when it comes to prescription abortives. About 8 or 9 years ago, I was prescribed a nasal spray that came in a one shot container. I was given two of them. This was back when I would get only one per night. It worked OK the first and second night (somewhat better than a shower). I was unable, however, to get a refill since it was the weekend. The next night was the worst of my life. The shower didn't work, and the intensity and duration were unprecedented. I could have filled the prescription the next day, but decided I didn't want to be dependent on it. Gradually, over the next few nights, the relief from the shower returned, and I have been living with that since...
Thanks for your input. PF wishes to you as well...
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jld
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Re: 2 weeks into new cycle, after 2 years off
« Reply #9 on: Nov 6th, 2007, 12:09pm » |
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Guiseppi,
That does sound miraculous. I like the idea of 02 also, since it seems more of a 'natural' solution. I have a Dr.'s appointment for Thursday, but I'm hoping I can move that up.
BTW, Do you get multiple hits per night, and does the O2 noticeably alter the time or frequency of them? Thanks again for your thoughts and insights...
- John
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Guiseppi
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Re: 2 weeks into new cycle, after 2 years off
« Reply #10 on: Nov 6th, 2007, 1:39pm » |
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I never got night time hits the first 20 or so years, it's only in the past 10 that's started. Never more then one per night, with a small caveat.
I'm in a minority of people in that oxygen alone won't always keep them away. I have to take an oral medication, cafergot, then breathe the oxygen. The oxygen almost always beats them down. Without the cafergot, they return about 20 mnutes later. By taking the oral cafergot, then starting the oxygen, usually buys me about 12 hours.
Cafergot is an old school CH med that fell out of favor because it takes too long to get into your system, you're already at an 8 by the time it hits your bloodstream. But I stress that I'm in a minority, most people don't require the cafergot back up.
I have heard of several of the abortive medications causing rebound headaches and even lengthening cycles. To date I have never heard either complaint about oxygen. Print out the oxygen info from the board and bring it to your doctor. For some reason doctors are far more willing to prescribe highly addictive narcotic medications then something as safe as oxygen.
Guiseppi
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barnythebear
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Re: 2 weeks into new cycle, after 2 years off
« Reply #11 on: Nov 6th, 2007, 5:03pm » |
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Melatonin helped with mine as well as the Red Bull. Try taking about 9mgs and see what happens. At least you can get these in the US at places like Vitamin World. Good luck.
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jld
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Re: 2 weeks into new cycle, after 2 years off
« Reply #12 on: Nov 9th, 2007, 4:31pm » |
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O2 Does the trick!! Thanks to all of you (Potter, Tony, Guissepi, Dennis, et. al), I requested 02 at my Dr's appt yesterday. He prescribed 2 lpm with the nasal applicator. I told him (per all of your rec's/links) that I would need 15 lpm with a non-rebreather mask. He said 2 is what they start with, yada, yada... I figured I still had my shower, so I just left expecting I would not even fill the prescription. The O2 supply company called that afternoon asking to verify that the prescription for 15 lpm was correct!! I guess I musta looked pretty pathetic in the Dr's office... I got it set up last night and was amazed at how it knocked out the beast. I could get back to sleep within 10 minutes of it starting. I still had 4 hits, but I got over 1 1/2 hrs of sleep in between each. I still need to get a better mask. I plugged up the holes on the one I have, but I think I'm wasting O2 without the non-rebreather mask... I would NEVER have known without this site and you folks.
THANK YOU!
- John
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vietvet2tours
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Re: 2 weeks into new cycle, after 2 years off
« Reply #13 on: Nov 9th, 2007, 6:58pm » |
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Fuckneh 
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ski2k
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Re: 2 weeks into new cycle, after 2 years off
« Reply #14 on: Nov 10th, 2007, 2:19am » |
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Absolutely incredible!!! I'm sooo happy for you!! Just love hearing about someone beating the beast down!! WOOO HOOO!!!!!!!
Next step is to possibly get on a preventative, and see if you can avoid getting them alltogether.
As far as your hot shower goes, a lot of people here have done that. Others here swear by cold. For me, neither helps. It just depends on the individual.
A lot of us use Melatonin, an over the counter supplement, to avoid night hits. Simply take 6-12 mg about an hour before bed, and that helps prevent them. I'd recommend starting at 6mg for a few nights, and if it doesn't help, going up from there. Of course, talk to your doc before starting any medication.
Glad to hear the O2 works! Keep us posted as to how things are going!!
Best wishes,
Adam
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DennisM1045
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Re: 2 weeks into new cycle, after 2 years off
« Reply #15 on: Nov 10th, 2007, 8:12am » |
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I couldn't be happier for you. Awesome job negotiating with the Dr too. Now get on the phone to the office and get a non-rebreather added to your perscription. If that doesn't work you can order them on-line for a few bucks. Hell, you'll save that much in your hot water bill alone 
Melatonin keeps the beast away at night for me. Like Adam said, start with 6mg and up it to as much as 12mg if that doesn't help after 1 week. It does take some time to build up in your system.
I love outcomes like this. The difference O2 makes when it works is amazing. Helping folks come from where I was to where I am is the reason I post! FuckenA! This makes my day!
-Dennis-
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jld
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Re: 2 weeks into new cycle, after 2 years off
« Reply #16 on: Nov 12th, 2007, 11:10am » |
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Hi all,
I had my first PF night last night. Not too unusual, since my cycles last anywhere from 2 to 4 weeks or so. What makes it very unusual, though, is the presence (shadow/background pain/whatever you wanna call it) was there when I went to sleep. I fully expected to get hit. The only thing missing was the fear/dread of it. Thanks again to all of you (and the O2) for that. I wanted to document here a couple of things I hadn't mentioned yet. I went to a family friend and doctor (chiropractor) who treated me with a neck adjustment and acupuncture the same day ( Thurs 11/8 ) I saw my regular Dr. It was the first time I had done either of these (definitely not my style). I can't recommend either. The one positive thing I took from that visit is the diet/vitamin recommendations. I started taking 3000mg/day of Vitamin C, and about 1000mg/day of magnesium. BTW, my regular Dr. also recommended the Magnesium... I'm curious if anyone is taking C or magnesium. I'm not sure what kept the beast away last night. I'm thankful for that, but I also want to know. I think it is a combination of the peace of mind the O2 provides, and possibly the vitamins/magnesium; or maybe this cycle is ending... I will report to my Dr. the effect of O2. Hopefully, we will get the cause and cure better understood soon. It seems to the worst cases almost always involve misdiagnoses and/or mistreatment. That needs to end...
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