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Title: clusterhead in cleveand.. Post by coach_bill on Jan 20th, 2008, 11:00pm hello, in new to the board and im so glad i found someone eles who knows what this like. my wife feels bad and tries to help (god bless) but i didnt think anyone could understand this. but i found this site and im glad i did. ive been on the preds for 5 days now, got oxygen at home, just got imitrex shots (scary) but helpful. ive been thourgh the pills, never really helped it from going full killer, but the oxygen has seemed to help. anyway im looking to talk or chat or whatever, just wanted to see if there were any groups or anyone near cleveland. so let me know. coach bill |
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Title: Re: clusterhead in cleveand.. Post by chewy on Jan 20th, 2008, 11:03pm Using prednisoane without a preventative rarely produces the desired effect. |
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Title: Re: clusterhead in cleveand.. Post by brewcrew on Jan 20th, 2008, 11:07pm If you were to lay out a list of everything you take for this, some of us might be able to look at it and tell you if it looks like the right approach (i.e., transitional, preventative, abortive). |
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Title: Re: clusterhead in cleveand.. Post by Redd on Jan 20th, 2008, 11:10pm Welcome Bill, It sounds like you at least have a doc that knows something about Ch. That's gift in itself. Someone should be along soon to post the link to the current CH treatments. I haven't updated my links so the one I have is out-dated. But Knowing you have gotten O2 is reassuring that you have a doc who's in the know, and probably willing to learn more. |
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Title: Re: clusterhead in cleveand.. Post by brewcrew on Jan 20th, 2008, 11:10pm on 01/20/08 at 23:09:04, coach_bill wrote:
Not good at pill taking? What does that mean? Are you taking anything for this right now? Yes, I've been suffering from CH since 1989. Have you been diagnosed by a neurologist? |
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Title: Re: clusterhead in cleveand.. Post by chewy on Jan 20th, 2008, 11:12pm What type of O2 mask are you using and what flow rate? |
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Title: Re: clusterhead in cleveand.. Post by Redd on Jan 20th, 2008, 11:13pm on 01/20/08 at 23:09:04, coach_bill wrote:
The vast majority of us are sufferers, and then we also have our resident supporters who are a blessing to all of us. If you read the intro page this site is dedicated to CH sufferers and supporters exclusively. |
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Title: Re: clusterhead in cleveand.. Post by chewy on Jan 20th, 2008, 11:24pm First off it takes approx. 7-10 days for verapamil to become theraputic. Secondly, predisone is normally prescribed as a taper beginning with high doses. Thirdly, most use the O2 at a rate of 12-15, not 6. Jelly? You dont know the name of it or its purpose? |
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Title: Re: clusterhead in cleveand.. Post by Redd on Jan 20th, 2008, 11:26pm on 01/20/08 at 23:18:04, coach_bill wrote:
Verapamil takes about 2 weeks in the system to become effective, and then it's a case by case basis how much is needed. It's not a BP thing, but the fact that the med is usefull for many to slow down the hits or lesen the kip levels. There is no magic pill to stop this beast. It's about finding the right meds to halp YOU. No cure, but ways to keep the beast at bay as much as possible. Then the people here keep the emotional aspect in check that it can be dealt with and still live a good life with the right additude. Everyone has "something"...this is our "something" and we can let it rule us, or we rule it. The choice is ours. |
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Title: Re: clusterhead in cleveand.. Post by Melissa on Jan 20th, 2008, 11:27pm Hello coach bill, First of all, the verapamil takes at least a couple weeks to work. With the oxygen, a regulator with at least a 15lpm flow rate with a nonrebreather mask is what is needed. It sounds good that you can get some relief at 8lpm, but could do better with that setup. Please check out this link: http://www.ouch-us.org/chinfo1.htm Read as much as you can with the links on that page. I'm sorry for your pain, but you have found the right place to arm yourself with the tools you need to fight it. hugs, mel |
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Title: Re: clusterhead in cleveand.. Post by chewy on Jan 20th, 2008, 11:34pm Theres a button over there <------ that says "oxygen info" Click it. I'm guessing the jelly might have been lidocaine? |
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Title: Re: clusterhead in cleveand.. Post by chewy on Jan 20th, 2008, 11:42pm Your Doc sounds like he only knows the basics but is not yet fully educated on effective treatments. So now its up to you to bring him the neccesary info. Everything you need to know is somewhere on this site. Start reading. Heres a good start: http://www.plainboard.com/ch/chtherapy.pdf |
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Title: Re: clusterhead in cleveand.. Post by chewy on Jan 20th, 2008, 11:58pm Read the link I gave you. Heres how I treat my cycles. 1) Start a predisone taper beginning with 80 Mg per day and taper down. 2) Simultaneously begin a preventative regimen of 480 Mg. of verapamil per day. 3) Imitrex injections of 3 Mg to abort breakthroughs. I use half of a vial with an insulin syringe. 4) 9mg of melatonin at night If your going to use O2 you need a regulator that will admister up to 15 lpm through a non rebreather mask. (The one with the bag on it) Nothing is carved in stone. You need to find treatment methods that are tailored to your needs. P.S You need to educate your Doc. |
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Title: Re: clusterhead in cleveand.. Post by artonio7 on Jan 21st, 2008, 4:13am Howdy Coach Bill... nice to meet you. We are almost neighbors I live 1 hour and 45 minutes away in New Castle, pa. Let me know if you're ever out this way. with warm regards, Tony |
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Title: Re: clusterhead in cleveand.. Post by BarbaraD on Jan 21st, 2008, 8:17am You said something about topamax. How much of that are you taking? It's been my miracle drug. I take 100mg at night and it usually keeps me pretty much in remission (nothing is perfect). Red Bull energy drink (chug-a-lugged) at the onset of a hit works for a lot of us as an abort, but has to be done at the very onset. O2 at a high rate of flow (15 liters at least with a NON -REBREATHER mask) is great for a LOT of us. Imitrex injections are the drug of choice for aborts around here - Personally I take cafergot (ergotomine) and swear by it, but that's a personal choice. Everyone has to find his/her own magic cocktail that works for them BUT don't give up after two days -- some of these meds take a couple of weeks to get in your system. Melatonin at night (for the night hits) takes a couple of weeks to get in your system - I know I gave up twice before I figured that one out - now I swear by it. It seems to be in our nature to want something that works NOW, but there's just not anything available right now, so we've all had to learn a little patience (easier said than done when you're hurting). Most of us have used the pred taper while the other meds have gotten in our system and it's worked great (not for all but for a big part of us). Take a deep breath -- there's nothing that's gonna "cure" you (yet). Read what's on this site -- that's important. Take this stuff to your doc and discuss treatments with him. O2 should be your first line of defense with a vaso-constrictor as an abort (imitrex or ergotomine). Coffee or Red Bull at the first sign is a good first step and melatonin at bedtime. Let us know what you're doing and how it's going. We're here to help. Hugs BD |
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Title: Re: clusterhead in cleveand.. Post by chewy on Jan 21st, 2008, 1:04pm on 01/21/08 at 08:17:42, BarbaraD wrote:
Can someone show me where that is documented. I find Melatonin to have an immediate effect. Maybe its because I want it to. I dont know. |
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Title: Re: clusterhead in cleveand.. Post by E-Double on Jan 21st, 2008, 1:07pm Immediate effect! Not the one I was looking for as I was extremely groggy at first then got used to it and it became the ultimate preventative for nocturnal attacks. My magic # was 9mg |
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Title: Re: clusterhead in cleveand.. Post by chewy on Jan 21st, 2008, 1:32pm I have heard the "build up in your system" a few times in relationship to Melatoninbut have never found that to be the case and have never seen any medical documentation of it. I use it when out of cycle and 9mg is my magic bullet as well and it is immediate. |
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Title: Re: clusterhead in cleveand.. Post by chewy on Jan 21st, 2008, 4:37pm Melatonin is an over the counter (OTC) supplement that can be gotten at any US pharmacy or your local Walmart. http://health.yahoo.com/other-other/melatonin/healthwise--d04058a1.html Heres another link to look up info on prescription drugs. http://www.rxlist.com/script/main/hp.asp |
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Title: Re: clusterhead in cleveand.. Post by DonnaH_again on Jan 21st, 2008, 7:54pm Hi Bill and welcome to the family. You take Melatonin about 1/2 hour before bedtime and to the best of my knowlege just during cycle when you need it. I will be corrected if wrong! ;;D I'm from the Cleveland area too......moved to southwest Florida in 1984. Raised in Brooklyn Height Village ( near Schaaf Road and Brookpark.......the green house area), got married and moved to Parma, bought the first house in Aurora and built the the second in Richfield. Went to Cuyahoga Height Schools. How about you? |
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Title: Re: clusterhead in cleveand.. Post by chewy on Jan 21st, 2008, 7:57pm I use the melatonin when out of cycle when I know I'll need a little help with a good nights sleep. I take it just as Donna said, about 1/2 hour before bed. |
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Title: Re: clusterhead in cleveand.. Post by George_J on Jan 21st, 2008, 8:15pm Welcome, Bill. I too take melatonin during cycles, also 9 mg nightly, taken 1/2 hour to 1 hour before bedtime. Although I don't consider it a magic bullet, it has been effective at reducing the number of nighttime hits that I get. I occasionally take it when I am out of cycle as well. By the way, my wife's older sister lives in Cleveland Heights. :) Best wishes, George |
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Title: Re: clusterhead in cleveand.. Post by Charlie on Jan 21st, 2008, 9:39pm Welcome Bill but I'm sorry you have to deal with this horror. These characters know what they are doing so pay some attention. I can add this technique that worked so well for me: Dr. Wright’s Circulatory Technique: I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments. I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain. I used to try to imagine I was pushing blood away from my neck into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working. This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance. Charlie |
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Title: Re: clusterhead in cleveand.. Post by nani on Jan 22nd, 2008, 12:29am on 01/21/08 at 13:04:07, chewy wrote:
Immediate effect. I believe that info came from posting about one person's experience with it. When I'm getting hammered at night, it makes a difference starting the first night I take it. Hi coach bill. You've got some great info here. Good luck and pain free wishes to you, nani |
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Title: Re: clusterhead in cleveand.. Post by coach_bill on Jan 22nd, 2008, 4:53pm wow, im going to practice that,i dont know but maybe it could work. its just so hard to think of anything in that split moment but waking my wife to run to get that imitrex shot. right now im tapered down to 40mg of preds a day for 2 more, and topamax still.. so when im down to 20mg taper and topamax increace to 100mg then im gonna start going with the melatonin, because im scared to death of this shit coming back again. also, im working on getting the proper mask, i had to call my doctor and ask for him to call the medical supply place that sent me my tanks because it may need a perscription?? so now they have to check my INSURANCE. im getting pissed, and you people are helping me. im not laying down for this any more. but someone tell me this. even when i do beat his beast down into remmission, and i got all the tools ready, how can i keep from giving up that 1 attack that starts this whole fricken nightmare again!!!! |
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Title: Re: clusterhead in cleveand.. Post by brewcrew on Jan 22nd, 2008, 5:09pm on 01/22/08 at 16:53:05, coach_bill wrote:
You probably can't, unless you want to stay on preventatives 24/7/365. You should go into it knowing that a) it's not going to kill you, and b) you will know what to do when it hits. Just knowing what to do is often comfort enough. It means you still win. |
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Title: Re: clusterhead in cleveand.. Post by Jonny on Jan 22nd, 2008, 6:22pm on 01/22/08 at 17:09:02, brewcrew wrote:
I did that for nearly 14 years, by no means did it stopped them all, but was much better than the alternative. |
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Title: Re: clusterhead in cleveand.. Post by chewy on Jan 22nd, 2008, 6:27pm Remember. This isn't about curing your CH but about managing the affects of your CH. |
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Title: Re: clusterhead in cleveand.. Post by chewy on Jan 22nd, 2008, 6:52pm Edging ever closer to the wonderful world of drama. |
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Title: Re: clusterhead in cleveand.. Post by chewy on Jan 22nd, 2008, 7:17pm on 01/22/08 at 18:35:47, coach_bill wrote:
This will work for ya. Forget all the other "its going to kill me" bullshit. You've gotten a ton of info off this site. Use it to prepare for battle and be ready. Its that simple. |
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Title: Re: clusterhead in cleveand.. Post by BlueMeanie on Jan 22nd, 2008, 7:29pm Hey Coach. Assuming you have had ALL other symptoms checked out (tumor etc.), it is NOT going to kill you. If you got the correct 02 setup along with Trex you will do just fine. Work on some prevents and it'll even get easier to deal with. |
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Title: Re: clusterhead in cleveand.. Post by coach_bill on Jan 22nd, 2008, 7:39pm your both right. im working on the mask, its not as easy as i thought it would be to get the mask. they must cost alot do u need the percripton for it?? i should know tommorow. and also im interested in how to break down those imitrex shots, my insurance wont give me more than 2 a month, thats not going to work, i had my doc call about prior authuration, but its like im starting to hassle him, but i dont care, and i got the explain from the insurance that i dont understand, i just got to figure how to work the imitrex tip. |
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Title: Re: clusterhead in cleveand.. Post by Jonny on Jan 22nd, 2008, 7:44pm on 01/22/08 at 19:39:45, coach_bill wrote:
Click the button on the left that says "Imitrex tip".....Duh! |
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Title: Re: clusterhead in cleveand.. Post by chewy on Jan 22nd, 2008, 7:46pm Want the easy way to work the imitrex tip? Ask your Doc to prescribe vials instead of the auto-inject. |
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Title: Re: clusterhead in cleveand.. Post by George_J on Jan 22nd, 2008, 10:29pm on 01/22/08 at 18:35:47, coach_bill wrote:
Well, it won't. Feels like it ought to, though. If it did kill us, I would have been dead a long time ago. Best wishes, George |
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Title: Re: clusterhead in cleveand.. Post by brewcrew on Jan 22nd, 2008, 10:33pm on 01/22/08 at 18:22:47, Jonny wrote:
True - you were chronic. But if Bill's episodic, he should be able to get off the meds for decent chunks of time. |
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Title: Re: clusterhead in cleveand.. Post by Gator on Jan 22nd, 2008, 10:34pm on 01/22/08 at 19:46:53, chewy wrote:
Absolutely. I like to use the vials and a 31 gauge, .5cc, short needle insulin syringe. I keep a hardside eyeglass case with several loaded syringes close by at all times. Works great! When I get the statdose kits, I use a syringe to draw out air and then open the injector and use a qtip to push the trex into the vial. You have to remember to pull as much air out as trex you put in or you could make a real mess. Modified to add the quote from chewy. |
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Title: Re: clusterhead in cleveand.. Post by coach_bill on Jan 23rd, 2008, 9:05pm im hoping to god i dont go chronic its always been in the late fall, couple years apart, starts at night after the time change, this time it came back slowly after the preds 4 days off. so im back on the preds, and topamax too. last time i only took the preds and it went away, so im hoping i will get off the topamax lets say by spring?? im a coach of tournament girls fastpitch baseball. 90 games a season. all in the sun. i need this to go away, the 02 and imitrex will always be close by now. and i will have a script of preds ready for when i cant fight any more, but i cant just agree to just live on this stuff. i gotta find a way. |
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Title: Re: clusterhead in cleveand.. Post by Jonny on Jan 23rd, 2008, 9:35pm on 01/22/08 at 22:33:44, brewcrew wrote:
Big time agreed!, Brew on 01/23/08 at 21:05:23, coach_bill wrote:
Sorry Bill, but I will blast you if I ever see you post shit like that again! We dont give up or give in....We fight!...got it? |
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Title: Re: clusterhead in cleveand.. Post by brewcrew on Jan 23rd, 2008, 9:38pm on 01/23/08 at 21:35:25, Jonny wrote:
Bill, Jonny's right. You are quickly becoming a member of this family, like it or not. And family members are not allowed to talk this way. We shall never speak of this again. ;) |
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Title: Re: clusterhead in cleveand.. Post by coach_bill on Jan 24th, 2008, 9:30pm i got!! and i wont anymore. its just thats its been 8 days days since my last dance, and it was a knock down drag out, what i ment by "cant fight anymore" is i went for for 8 weeks since early november wakinging up 2 times a night full blown 9 kipers with nothing, no preds no imitrex no nothing, all i had advil migriane and a hand full of 4year expired 2.5mg zomig from my last attacks. i fought hard. and i will fight again. im just a little freaked out and nervous they came back after the 1st dose of preds, dont give up on me.. i need this family |
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Title: Re: clusterhead in cleveand.. Post by chewy on Jan 24th, 2008, 9:37pm Its all a matter of acceptance Bud. You got, we got it, so deal with it. You dont have to fear the beast but you do have to respect him. He's a powerful son of a bitch but he can be tamed. |
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Title: Re: clusterhead in cleveand.. Post by Callico on Jan 24th, 2008, 10:22pm Coach Bill, Jonny's right. We don't ever want to hear stuff about not being able to fight it anymore. It will NOT kill you if you don't help it. There are many of us who do not have insurance who do the dance with the beast without Trex or some of the other more powerful drugs. Personally I haven't used anything other than Kudzu and coffee and Red Bull for about three years. I'm not saying I'm better, stronger, smarter, or anything else than you, but one does what one has to do. Your mental attitude toward it is more important than all of the meds you can take. It is exactly the same as attitude in sports. It is all in the heart and mind. Jerry |
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Title: Re: clusterhead in cleveand.. Post by DonnaH_again on Jan 24th, 2008, 10:23pm I know that I know how Bill feels. Charley does too, I'm quite sure. We were without meds, without docs who knew what a ch was and just had to accept what came along. It was frightening. Panic time when you felt the beast approaching and you knew that he had all the power and you just had to submit until he was done toying with you. Bill, you will probably find the right combination that will work for you. Keep working at it and know that in all probability you will find it. With all of the experience on this board, you'll find what works. |
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Title: Re: clusterhead in cleveand.. Post by BarbaraD on Jan 25th, 2008, 8:09am About the melatonin -- with ME it took a while to start working and I just thought it took a while to get in your system - no one ever corrected that "assumption" before - sorry about that one guys... Maybe I didn't take enough or somethin', but it works now with 12-15mg. And I swear by it and recommend it highly. Just don't give up on it if it doesn't work the FIRST time you try it. Hugs BD |
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Title: Re: clusterhead in cleveand.. Post by coach_bill on Jan 25th, 2008, 8:13pm thanks, i coach my kids to play with your heart and soul and never give up, no matter what the score. you people are stong, you would all be great coach's. |
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Title: Re: clusterhead in cleveand.. Post by chewy on Jan 25th, 2008, 8:16pm on 01/25/08 at 20:13:00, coach_bill wrote:
So are you. You just have to find it sometimes. |
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Title: Re: clusterhead in cleveand.. Post by Kevin_M on Jan 25th, 2008, 9:21pm on 01/22/08 at 19:39:45, coach_bill wrote:
If it returns after the pred, you have oxygen too, but a regulator and mask should have been delivered with it. Your doc can simply alter your prescription to include a non-rebreather if it was not on there, it's not a request he should deny. The oxygen company will then deliver. This will help conserve the Imitrex also. We can offer a lot of help working with the oxygen with you. A link to a medical supply company that sells non-rebreather masks is here: http://www1.mooremedical.com/index.cfm?PG=CTL&CS=HOM&FN=ProductDetail&PID=11274 Preventatives may take an adjustment period to get right, but stress the importance of abortives to your doctor during this time. Usually they have samples, ask, but he should have offered by now. |
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Title: Re: clusterhead in cleveand.. Post by billlmack on Jan 26th, 2008, 12:08am welcome Bill you've found the right place the people here are awsome. i'm sure you'll find the right system that works for you just suck up all the knowlege this family offers and apply it to Bill's life. I'm a chronic sufferer and have been far 10 years. I've survived on Imatrex, caffine and push-ups ( no kidding). I've tried other drug treatments none seem to help for long. I've never tried Melatonin yet but I will this weekend. P.S. Push-ups work as an abortive for me. Try it next time your dancing with the devil drop and do as many pushups in a row as you can. Count to ten then repeat till the headache go away. Of course this maynot work for you but even if it doesn't at least you'll benifit from the suffering. |
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Title: Re: clusterhead in cleveand.. Post by coach_bill on Jan 26th, 2008, 2:37pm thanks all, chronic means everyday, non stop for life? even the preds dont help? i feel like a whimp after crying, compared to what some or most of what the others in this family have dealt with on a everyday basis. im lucky to have insurance. and got a doctor who is giving me everything i ask for. just got a call from the med supply company and my mask will be deliverd within 3 days. it did need a persciption. i learned all this from the people in this web site. thank god for that. the meltonin ive taken for 4 nights im up to 9mg now. woke up at 2.30, no pain, but still woke up. got to get that number past the 4am inning to sneak one bye him maybe and try to take the game into my bullpen.. but it is working i usally wake up 3 times before 2.30am just need to get my right mg. i would still alone again without this website right now. and still worried. but i hope its ok if i stand next to you jonny, after all your the 1 with gun lol. coach bill |
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Title: Re: clusterhead in cleveand.. Post by Jonny on Jan 26th, 2008, 6:07pm on 01/26/08 at 14:37:09, coach_bill wrote:
No problem, just stay out of my muzzle blast if a black limo pulls up real fast! (they wont be friends of ours) ;) http://im1.shutterfly.com/procserv/47b6db28b3127cce8916df7c489e00000015108AZM2bNk5bM6 |
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Title: Re: clusterhead in cleveand.. Post by brewcrew on Jan 26th, 2008, 7:44pm on 01/26/08 at 14:37:09, coach_bill wrote:
Nope. Chronic means going for 12 months without a pain-free break of 30 days or more. It's just a definition thing. Sometimes meds just stop working, like they have for me twice. It's called becoming intractable. Both times this happened to me I ended up in the hospital for the 3-day IV DHE treatment. My cycles broke soon thereafter. |
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Title: Re: clusterhead in cleveand.. Post by coach_bill on Jan 27th, 2008, 8:43am god i hope that doesnt happen to me but if it does then thats gods choice for me i guess.. the preds wipe them out so far at 60mg. down to last 2 days of taper so its game time soon, im nervous, but i woke up yesterday and told myself fuck it. if it comes back it comes back, and i will deal with it, i wont live in fear anymore. and jonny im not looking for a free ride anymore, give me gun too brother, and when that limo pulls up, i spray every damn bullet i got with ya man. coach bill. |
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Title: Re: clusterhead in cleveand.. Post by coach_bill on Jan 27th, 2008, 9:02am also i wrote a little poem kinda,( hadda get it out of me sort of thing) i would like to post for others to read but i dont know where would be the right spot to post it. i dont wanna just throw it on general posts, but i would like to share it, so any ideas on where i should post it? like i said its not to whimpy after all i did just enlist in jonnys army. coach bill. |
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Title: Re: clusterhead in cleveand.. Post by brewcrew on Jan 27th, 2008, 9:46am Many folks have posted their poetry right here on the general board. I say go for it. |
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Title: Re: clusterhead in cleveand.. Post by coach_bill on Jan 27th, 2008, 11:06am POSTED. when he comes. thanks to all for your support |
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