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Title: I can't do this anymore Post by naka425 on Nov 8th, 2007, 10:53am Hello, I’m 25 years old and have head cluster headaches since I was 8. (I know that I don't need to describe the pain as you all know what I'm talking about) As a child I thought it was my teeth causing this overbearing pain on the right side of my face. So I would go to the dentist and guess what tooth I thought it was. Calling them my "toothache headaches". I have had a root canal and a tooth pulled.. for nothing of course. It wasn’t until I was 18 that my mom really started to understand the pain I was in and took me to the emergency room where they of course said. "Looks to me like she is suffering from a migraine". So off to my regular doctor I went seeking treatment for a "migraine". I went though so many different pills and even ended up getting a heart palpitation from a blood thinner I was put on. It wasn't until I was 22 that I went back to my doctor and was set up with a "new doctor" who listened to my story and said the best and worst words of my life. "what you have is cluster headaches". I went home and looked up what she had said and was relieved to see that I wasn’t crazy. Others had banged their heads on the wall, screamed, cried, paced ect. So I started taking Imitrex shots. Those have gotten me through the years until recently. My clusters have changed seasons. Evan changed times. They are lasting for a longer stretch of time. And are killing me. Last night I had 3 separate headaches. I only took one shot, because well... that’s all I have left. I've spent over 400$ in the past week on shots and the friggin pharmacy lady is giving me a hard time on how much I’m buying. I'm at my wits end. I truly feel like I cannot take much more of this. So, I was hoping joining a support group would help. Thanks for listening er reading my story |
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Title: Re: I can't do this anymore Post by nani on Nov 8th, 2007, 11:06am on 11/08/07 at 10:53:56, naka425 wrote:
It most definitely will help. :) Welcome naka and sorry you have to be here. There is a lot of info here, so start reading. First, have you tried oxygen as an abortive? Much cheaper and safer than Imitrex. Read about it here: http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm and here: http://www.chhelp.org/mhni.html Here's a list of common medications to look over and discuss with your dr: http://www.ouch-us.org/medications/medications.htm In the meantime, many people get relief from energy drinks that contain taurine and caffeine. Drink it quickly at the beginning of an attack. Finally, ask lots of questions. We're here to help. :) pain free wishes, nani |
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Title: Re: I can't do this anymore Post by naka425 on Nov 8th, 2007, 11:12am My doctor had said most insurance companies won't cover oxygen. I've been on so many diffrent things I'm not sure if I have tried an abortive medication. The only thing that seem to work was Imitrex. So I stuck with it. I did just call my doctor. Crying in pain and frustration for help. Of course I can't get in till next week. But I begged for something else to ease the pain so I can make it through the weekend. He is suppose to be calling me back. I will try the energy drinks. In fact I'd try drano if someone said it worked!!! |
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Title: Re: I can't do this anymore Post by cash5542 on Nov 8th, 2007, 11:16am I was also by a doctor that o2 wasn't covered. Callyour insurance company and see what they say. Also I was very pleased with the oxygen supply centers. They seem to know how to work the system. Don't take no for an answer the first time. it took me awhile to figure it out but we did! Good luck! It's worth the effort. Charlotte |
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Title: Re: I can't do this anymore Post by nani on Nov 8th, 2007, 11:19am Even if your insurance doesn't cover oxygen (most will if you have a letter from your dr), it's pretty cheap. Especially compared to Imitrex. A good preventative (or two) will really help cut down on the attacks. If I were you, I'd make a list of what you have tried in the past, and see what else is available. |
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Title: Re: I can't do this anymore Post by Guiseppi on Nov 8th, 2007, 12:27pm Good morning child!!! You're where I was 25 years ago, trying to find something to make it stop hurting. I've sent an e-mail to one of our New York girls who'll be pm'ing you shortly to help you get thru the red tape. You need to understand the 2 pronged approach you have to take to manage these things. You need to find a preventative medication. That's something you take while on cycle that reduces frequency and intensity of the headaches. I use lithium, other common prevents are verapamil and topomax. If you just keep trying to use abortives like imitrex you'll go broke fast! Most of the prevents are far cheaper. The second prong is the abortives, #1 abortive should be oxygen. I don't understand why doctors are so hesitatnt to prescribe oxygen, but are more then happy to stuff you full of highly addictive narcotics, which as I'm sure you realize by now, do not help at all. Hang in there, we are all here to help you and you CAN handle this. Guiseppi |
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Title: Re: I can't do this anymore Post by naka425 on Nov 8th, 2007, 1:40pm You have no idea how much this converstion alone gives me hope... Well maybe you do. I do have a ? for everyone. Do many of you have your clusters change cycles and intesity? Mine have been a basic Kip 9 -10 my whole life with a few Kip 6. But the first 2 months I was just having shadows nothing full blown But the last 3 weeks they have been 9-10s. Just very irregular for me. Im ususally prepared for my cycle. But this has got me all sorts of confused. |
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Title: Re: I can't do this anymore Post by Guiseppi on Nov 8th, 2007, 1:46pm Well it's more bad news but the only really predictable thing about these is how quickly they can morph on you. You'll go pain free for 2 years for no reason, then get hit with an 8 month cycle. You can't cure them but with the right attitude, and a doctor who'll work with you, you can certainly manage them. Guiseppi |
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Title: Re: I can't do this anymore Post by Maffumatt on Nov 8th, 2007, 1:50pm The nature of the beast is change. HE changes all the time, what works this go around may not work next cycle, and what didn't work last time may work this time. He's a tricky bastard to be sure. For a lot of us each cycle is different and there is some evidence that some of the drugs we take may actually prolong a cycle. |
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Title: Re: I can't do this anymore Post by artonio7 on Nov 8th, 2007, 2:04pm Here's a video posted on youtube which shows the non-rebreather clustermax the regulator and the use of o2 while aborting an attack http://www.youtube.com/watch?v=_X_XCBcY17A I hope it helps. with warm regards, Tony |
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Title: Re: I can't do this anymore Post by Brewcrew on Nov 8th, 2007, 2:17pm Quote:
No more talk like that. You CAN do this, you have been doing it, and you will continue to do it. You've started reading things here. Keep reading. You've reached out and many of us are reaching back. You can do this. You are a clusterhead, and you are one of the toughest mother f*ckers on the face of the earth. Welcome aboard. We all do what we can to help each other. At the very same time I HATE like hell that you're here, and I'm so relieved that you are. Bill |
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Title: Re: I can't do this anymore Post by naka425 on Nov 8th, 2007, 2:32pm The part thats frustrating is...( and I'm sure you know). I'm afraid to go to sleep. When I do go to sleep HE arrives. And I go throught another sleepless night. Ive been showing up late to work several times a week. I cant afford the medicines Im on... You know the same old story. I guess I just need to grow some Kahunas and call my Insurance company and confront my Doc. How long does it take for oxegen to relieve the pain? |
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Title: Re: I can't do this anymore Post by artonio7 on Nov 8th, 2007, 2:52pm If used properly and if you start at the slightest twinge (in my case) it can abort in as little as 5 minutes. But remember it is very important that you speak to your neurologist or doctor before starting o2 therapy or any medication. with warm regards, Tony |
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Title: Re: I can't do this anymore Post by Guiseppi on Nov 8th, 2007, 2:56pm Since you're getting creamed right after you go to sleep, read the link on Melatonin. It is an over the counter med you can purchase at vitamin and health food stores. Many people find they can avoid the night time hits by using it. I've never tried it but many on the board say it's worked for them. I'm with Tony, I can get completely pain free in as little as 6 minutes using 02. Guiseppi |
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Title: Re: I can't do this anymore Post by Brewcrew on Nov 8th, 2007, 3:27pm I, too, am in the 5-10 minute range for O2 (when I get to it as soon as I start to feel it). As far as sleeping through the night, Guiseppi is right on the money. You need to get on a preventative. Many of them are dirt cheap - much cheaper than abortives (i.e., triptans like Imitrex). It may be awhile before you find one that works for you, so try to be patient. Talk to your doc about:
I know I'm leaving some out, but you should know that you haven't even scratched the surface yet. There are many alternatives and you need to have (or find) a doc who will help you figure out which one is best for you. And keep reading (links to the left) and keep asking questions. Bill |
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Title: Re: I can't do this anymore Post by naka425 on Nov 8th, 2007, 3:30pm I do know that I have Tried Melotonin before. Unfortunitly It didnt help. It just made me more "out of it" as I danced around and searched for a cold washcloth. My good friend sent me a link on you tube of a guy having a cluster headache. I watched and cried and cried. Part in relief that he did EVERYTHING I do.. and part in sadness bc I know I will be facing that again tonight. You are all amazing in all of the suggestions and how welcoming you are. |
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Title: Re: I can't do this anymore Post by Rosybabe on Nov 8th, 2007, 3:34pm Hi Naka!! Welcome aboard! PLease take this article to your Doc on your next visit: http://www.plainboard.com/ch/chtherapy.pdf Hope you find relief soon !! Wishing you lots of pain free time!! Rosy. |
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Title: Re: I can't do this anymore Post by Brewcrew on Nov 8th, 2007, 4:22pm on 11/08/07 at 15:30:32, naka425 wrote:
Was it Chuck (long hair) or Tony (no hair)? |
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Title: Re: I can't do this anymore Post by naka425 on Nov 8th, 2007, 4:37pm Actually I watched both of them. |
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Title: Re: I can't do this anymore Post by Brewcrew on Nov 8th, 2007, 5:06pm It's some pretty powerful stuff. My hat is off to both of those guys for allowing themselves to be filmed while in that state. I think the biggest challenge for you right now, naka, is getting a good neurologist who knows about treating CH. Have you checked out the list of doctors on the OUCH website yet? Check out the links at the bottom of the following page: http://www.ouch-us.org/chinfo1.htm This is one of the links on that page. It's called Sufferer Recommended Doctors: http://www.ouch-us.org/chgeneral/doctors.htm |
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Title: Re: I can't do this anymore Post by naka425 on Nov 8th, 2007, 5:12pm Thank you so much. One last ? to end my day. Does anyone know of any over the counter meds I could take to get me through the weekend? Bc I cant speak to my doc untill next week. Anything....?? |
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Title: Re: I can't do this anymore Post by Brewcrew on Nov 8th, 2007, 5:24pm Ibuprofen, energy drinks, ice packs. And, over the short term, you can take twice as much ibuprofen as they recommend. In the past, I've taken as much as 800mg every 4-6 hours. Don't do that too long, though. Through the weekend should be fine. Understand going in that this stuff is only going to take a bit of the edge off, if that. |
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Title: Re: I can't do this anymore Post by naka425 on Nov 8th, 2007, 5:43pm Thanks.... I live off showers and Ice packs during a CH. And chew Ibuprofin like skittles. ( not to good I know) But I will def try the energy drink. What I find funny.. Well maybe not funny but amazing is that when reading some of the things people do to ease the pain. Its not like that was directed by a doctor. Its more like Human nature and when your getting a CH its instinct to get a cold wash cloth or jump into a shower. I guess im just overwhelmed with information and exstatic to have it at my fingertips!! |
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Title: Re: I can't do this anymore Post by nani on Nov 8th, 2007, 6:05pm on 11/08/07 at 17:12:53, naka425 wrote:
Besides ice, energy drinks and melatonin? Well, you could try kudzu. Lots of people find it helpful. Read all the links contained in this link: http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1110584362 Then read this: http://www.kudzubusters.com/KudzuFAQs.doc A local herb or health food store should carry it. And try the melatonin again. You can take between 3-12 mgs a while before bedtime. |
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Title: Re: I can't do this anymore Post by Brewcrew on Nov 8th, 2007, 9:35pm See? I knew more folks would jump in here with tips. Even more will - you watch. I didn't even think of kudzu because I've never tried it. Nani, you're the best! |
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Title: Re: I can't do this anymore Post by txbeck on Nov 9th, 2007, 2:21am Naka, remember too that what you DON'T take can be equally as important! Avoid anything with alcohol. Alcohol is a CH trigger, even in small amounts, for most Clusterheads in cycle. I saw that someone mentioned Nyquil, but that contains alcohol and probably exacerbates CH. Avoid codeine in particular, and probably any narcotic pain reliever. Even those that don't make it worse don't help either. That really sucks, doesn't it? Aspirin and ibupropen did nothing good for my CH and created so many digestive problems that now I can't take them even for ailments they could help. Tylenol doesn't help, but it seems to do less harm anyway. CHers have enough pain without cultivating a garden of ulcers. I keep 5 gel packs in my freezer at all times, but I also have heat packs handy. I take Melatonin every night, in cycle or not. Energy drinks seem to work, though they taste awful, but effective medicine is supposed to taste awful I suppose. Then, when you can, get a supply of O2 and a preventative that works for you and tame that beast! |
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Title: Re: I can't do this anymore Post by ski2k on Nov 9th, 2007, 10:24am Can you believe the amount of help you've found here already?!?! The people here are amazing, for sure!!! Just had to say welcome to the madhouse, and keep us posted as to how things are going. As far as your doc telling you most insurances won't cover O2... He's dead wrong! A lot of them will require some persuading, but will cover it. And even on the RARE chance yours won't, you can get the script and pay out of pocket for it. You mentioned you've spent $400 on imitrex shots in a week, and lemme tell ya.... O2 will cost you a fraction of that for a MONTH!! Call around to medical supply companies, and compare prices. I found one that told me I could get on a program that would let me have as many tanks as I wanted each month for... get this... $50 per month!! Bring in the empty tanks, and they'd give me full ones. I'd usually exchange 4-5 at a time (sometimes twice a week, when my cycle was at it's peak), and they were VERY willing to help me out! As to your cycle changing... I used to get my cycle every year, like clockwork, from mid-November to mid-January. A few years back, they changed.. I skipped a cycle and thought it was over! Was sooo happy! But then..... I got hit in about May, and it lasted longer than before. Now my cycle runs about every 18 months or so, I'll get hit with a 6-9 MONTH cycle. At most, I go 12 months pain free (from the end of one, 'til the beginning of the next.) So you are definitely NOT ALONE in this!! Energy drinks!!! BIG help there!!!! I was almost "impossible" to treat. Never found a prevent that worked for me (until now, but that's another story), and imitrex didn't work either, so I had to rely entirely on O2. And O2 only worked about 60-70% of the time. Nice... But when you get 10 headaches a day, that means 3-4 of them were untreatable. Then I found the energy drink trick here. It's STILL amazes me how well and quickly it works. And you don't need a script for them! How cool is that?!?! Man this turned into a LOOONG post! Sorry... Best wishes, and glad you found us! Keep us posted! Adam |
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Title: Re: I can't do this anymore Post by Brewcrew on Nov 9th, 2007, 12:31pm on 11/09/07 at 02:21:38, txbeck wrote:
Try NOS. Major amounts of caffeine and taurine, and it tastes like passionfruit. I kid you not. |
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Title: Re: I can't do this anymore Post by Linda_Howell on Nov 9th, 2007, 4:36pm Naka, Here is another tip to use until you can get your 02 and get set up. Sit in front an air conditioner and breath deeply and rapidly. Almost like you're hyperventilating. At one point many years ago... I was out of 02 and it was a Friday night at about 2 am...I had my supporter drive me around the block in the dead of winter with me sticking my head out the window. I don't recommend this but it DID work. I also never again let myself run out of 02 on a week-end. |
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Title: Re: I can't do this anymore Post by jld on Nov 9th, 2007, 5:15pm Naka, I'm new to the board. Just wanted to tell you that you came to the right place. Do whatever it takes to try the O2, but make sure you do it right. I really think I lucked out here, being a fairly skeptical person, I was reluctant to try something new that might not work when I had my proven way of getting by (45 minute hot shower). I've only used it for one night, but I was 4 for 4 with O2 last night in knocking back the beast. I keep energy drinks on hand now as well, and would say they are effective. I would have known about neither of these if not for this board and the people on it willing to help out those like us. My best advice: stay natural, stay relaxed, and don't dance... God Bless, John |
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Title: Re: I can't do this anymore Post by naka425 on Nov 13th, 2007, 10:04am Sorry I haven't been on all weekend. On top of the stress of my headaches, I bought my first house and have been trying to move in. Anyways. I tried the energy drink thing and I think I drank too much... I was doing my dance and thought the energy drink was gunna come back out. Eesh... My doc called me back on friday and gave me some samples of the shot and a script for Midrin... Unfortunitly I used all the shots by sunday and the Midrin did nothing to help the pain. It just made me feel like I couldnt cry. Trapped inside myself with the pain. An aweful feeling. So with 4 headaches a night I finally lost it and called the doc monday morning, he got me in while I was still having a headache. So my mom drove me ;;D To make a long story short. They didnt have anymore shots to give me But they did give me some imitrex pills. And a script for Cartia..? AND I'm headed to the nuerologist on the 27th. Dent nuerology. So being that I get my headaches at 12:30 on the dot every night. I decieded to take a imitrex pill at 12:00 hoping it would get into my system by the time the devil knocked on my door. I also took a cartia around 8. I woke up this morning pain free!!!! No headaches.. AHHHH what a relief to have a whole nights sleep. I just hope its not a fluke. Some of you have suggested sitting infront of an air conditioner. That has also been one of the things I swear by, (plus it keeps the washcloth cold) I just bought some ice packs.. and Im keeping my apt with the nuerologist evan if the cartia seems to help my headaches. LOL.. my post is all over the place here. I cant keep on one subject... My excitement overwhelms me That being said.. I have also read somewhere on here that people can not "have had one of those once" (cluster headache) No joke someone said that to me this weekend at my moms resturant. He 100% said "yea, I've had one of those once. Worse pain ever. I know what your feeling" I wanted to laugh.. Also does it tick anyone else off when someones says you have migraines? I love this place!!! |
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Title: Re: I can't do this anymore Post by E-Double on Nov 13th, 2007, 10:19am You've been given some kind and good advice. I am with Brew on this one........YES YOU CAN! None of that talk!!! With regards to melatonin, many find that it makes them groggy at first and I like you felt so fuzzy that doing my dance was that much more of a pain. However, I increased to recommended doses for CHer's which is much higher than for sleep= 9-12mg in fact they are now suggesting upwards of 18mg. This helped knock out my night time attacks for over a year. As far as Oxygen goes, if you can get a script regardless of what insurance or doctor says YOU NEED TO THEN CONTACT A MED SUPPLIER like APRIA!!!! They make things happen! They did it for my O2 and for something for my daughter when insurance wouldn't budge. Good luck and welcome from a fellow NYer albeit downstate ;) Oh yeah, by the map it look slike you are not far from our CHARLIE. Eric edit to add.........try to not be ticked of by migraine remarks. Pain is pain and though ours is documented as the most awful known to man....if someone has only ever stubbed a toe then to them THAT is the worst pain of all. It is important that you educate yourself on our condition but also others so that you do not make the same mistakes. Congrats on the new house. Now go kick a$$ with life 8) |
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Title: Re: I can't do this anymore Post by Guiseppi on Nov 13th, 2007, 10:54am I was givin Midrin in the early 80's when my doc was still in the "we'll throw everything against the wall and see what sticks" mode. It did nothing for me either. I know it sounds like a broken record, but really push hard for the 02. It's made me as close to "normal" as a spaz like me is capable of getting!!! Guiseppi |
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Title: Re: I can't do this anymore Post by StrangeBrew on Nov 13th, 2007, 11:58am on 11/13/07 at 10:04:15, naka425 wrote:
If this worked for you, you might want to ask for another triptan to take before bed which is actually effective longer. It's called Amerge. When I'm in a bad way, I will take one of those before bed and it's almost a guarantee I'll sleep through the night. |
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Title: Re: I can't do this anymore Post by naka425 on Nov 13th, 2007, 12:04pm I hope thats what worked... I will try it again tonight. If I have another headache free night I will call the doc and see if they can gimme some of that!! Looking at my medacine cabinet I feel like a friggin druggie!! LOL |
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Title: Re: I can't do this anymore Post by ski2k on Nov 13th, 2007, 12:30pm Glad to hear you got a good night of sleep! Just PLEASE keep in mind, that even if the trex or amerge are working for you, you should really have something else ready to go, too. I know it's been mentioned several times in this thread, BUT.... OXYGEN!! It's probably the number one abortive we clusterheads have at our disposal, and if you don't at least give it a try, you're only hurting yourself! When you get a breakthrough headache it's good to have it on hand! Sorry to bring it up again, but (unless I missed it), I haven't seen you post anything about asking your doc to get you a prescription for some. And yes... It's really that important! Ok.. I'm done nagging now. ;) Please understand I'm just trying to help! Take care!! Adam |
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Title: Re: I can't do this anymore Post by naka425 on Nov 13th, 2007, 12:33pm Hey Adam, Actually when I went to the doc on monday I did mention 02 but he said that the nuero will hafta prescribe that and that the insurance will be more apt to pay if it comes from the nuero. I will be there on the 27th and again ask for 02. And thank you for naggin. It only helps. :) |
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Title: Re: I can't do this anymore Post by StrangeBrew on Nov 13th, 2007, 1:16pm on 11/13/07 at 12:30:03, ski2k wrote:
Oxygen is my "drug" of choice - when I'm awake. But when I need to sleep, I need to sleep. I'm sure many here can relate. It's more than silly to me to be hitting the O2 every 90 minutes while trying to get a good night's sleep. |
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Title: Re: I can't do this anymore Post by naka425 on Nov 13th, 2007, 4:58pm I agree... I would give anything to ensure a 100% good nights sleep. Its hard to function everyday with CH alone but when you arnt getting any sleep either really messes up the day. I feel so refreshed today from not having a CH last night. Although I fear tonight. I fear everynight. I struggle to stay awake. So that it wont come. I've come to believe the anger I get when I wake up with a CH makes em worse. I can't help but to get ANGRY and curse the world. I've read the Kip scale and I swear most of my headaches are 9-10's. Rarely do I ever have less pain than that. (execpt for the first 2 months of my last cycle). But when I have my CH I scream and cry Everytime. I do the dance. I sweat, tear up, runny nose. Rock shake, Stand up, sit down, Lay down. Jump in the shower. stomp my feet. Punch my head in a hammer like fashion. Smack my neck. Kick. Throw a tanrum like a child. and again scream and cry Wander around the house like one of the diffrent rooms I enter may relieve the pain. Or a diffrent seated postion my relieve it. The soreness afterwards last the whole day. I am exhausted... metally, Physically, emotionally, I apologise to my boyfriend daily bc he can't get a good nights sleep either. I hate 'bothering" him with it. But I have to wake him up. I'm afraid to be alone. He asked me what I want him to do. I tell him just listen to me cry... Its wierd I know. But I dont want him to touch me. Or talk I just want him there. Luck for me he is a great support. I feel aweful, I feel selfish. My new neighbors must think Im a nut... I hope they dont hear my screams at night. Sorry I had to vent a bit. I've come here looking for help and never felt the need to explain the pain. But no one understands quite like you all..... |
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Title: Re: I can't do this anymore Post by sldrswyfe on Nov 14th, 2007, 9:06am Welcome Naka. Just last week I was screaming the title of this thread..."I cant do this anymore!!"...and Im still doing it, and have been for fourteen yrs, and chronic. I try not to scream that to family or friends because it scares the hell out of them....they worry I may do something drastic, it only took them over thirteen years to take me seriously, thanks to this site...and the info. I printed out from it. I also printed out responses from other clusterheads....I cannot begin to express my gratitude for ch.com...and to DJ for starting it. You are in a good place now...to arm yourself. You will be ok. Just hang in there, and do what you have to. Best wishes to you. Sherri |
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Title: Re: I can't do this anymore Post by ski2k on Nov 14th, 2007, 2:58pm Have you tried Melatonin yet for the night time hits? try about 6-10mg about 1/2 an hour before you go to bed... it stops or lessens the frequency of night time hits for a lot of us (myself included). Also, some are finding that Taurine tablets taken before bed seem to help too. Best wishes, Adam |
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Title: Re: I can't do this anymore Post by naka425 on Nov 14th, 2007, 3:39pm Meletonin didnt work much for me before. Just made everything Fuzzy.. BUT my doc did give me something called Cartia and imitrex pills. I take the Cartia daily and the Imitrex pills half an hour before i normally get a headache and I have been headache free for 2 nights!!! I hope its really working!!! And not just a fluke.. Tricky lil suckers will prob surprise me with a visit tonight. But I shall cross my fingers and pray... |
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Title: Re: I can't do this anymore Post by ski2k on Nov 14th, 2007, 3:42pm Sounds like the Trex might be workin for ya! Hope it keeps working! Best, Adam |
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Title: Re: I can't do this anymore Post by ski2k on Nov 15th, 2007, 11:40pm I was just wondering if the Trex pills are still helping you get through the night... Keep us posted. Adam |
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Title: Re: I can't do this anymore Post by naka425 on Nov 16th, 2007, 10:41am So far no headaches.. Yesterday was wierd though. I kept getting electric shock like pain on the right side of my face every min or so for about half an hour. No other pain. Nothing Lingering.. Just the "shock". Then later that night. My eye started to hurt and my check bone. But I took a Trex pill right away. And I didnt have a CH. Soo.. I guess so far so good. I was skeptical on the pill bc I didnt think It would get into my system fast enough. Thats Why ive depended on the shots the past 4 years. But Cross my fingers and we will trug on!! Thanks for caring! |
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Title: Re: I can't do this anymore Post by naka425 on Nov 19th, 2007, 9:27am IT WAS A FLUKE :'( I had a AWEFUL headache Friday night. I didn't have anything to abort it. Soo I suffered through for about 2 and half hours. Then Saturday night.... It was a 10 and aweful 10.. A 12 if it could be... I think I told my boyfriend to get a gun and shoot me.. At that point he thought he should take me to the ER. (which was probably a wise idea) After what seemed like FOREVER. We arrived at the ER. Where my bestfriend joined me. She has been dealing with my headaches for years and was able to tell the doc things I couldnt. Because I WAS SCREAMING out in pain!!! Grabbing my head, kicking... I must've looked like a child throwin a temper tantrum.. The doc actually knew about cluster headaches and gave me my first expirence with O2. My headache went away in minutes. What a relief. With my sanity intact.. I was embarrassed to see. I was still in my pjs.. donned with slippers. Matted hair from the shower, and a droopy eye. Was I ever a pitiful sight. We went to the store on sunday and bought 2 imitrex shots... BUT i used them both last night. I dont go to the Nuero untill the 27th... I dont know what im gunna do untill then. I cant afford the shots anymore... I think I'm gunna call my doc today and beg agian for something to hold me over.... I heart O2. I do NOT heart.. nights.. I hope all is well with the rest of you!! Naka |
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Title: Re: I can't do this anymore Post by Guiseppi on Nov 19th, 2007, 10:57am If the doctor saw the 02 work for you, will he prescribe it so you can have it at your home????? It's such an awesome feeling to have those little green tanks around your house just begging th beast to bring it on. Sorry about the weekend, sounds like it sucked. :-[ Guiseppi |
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Title: Re: I can't do this anymore Post by naka425 on Nov 19th, 2007, 11:11am I just called the doc and explained my weekend.. And told em how O2 worked. They are gunna call me back.. I did find Kudzu... What do you suggest for the recomended dosage and when sHould i take it? |
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Title: Re: I can't do this anymore Post by nani on Nov 19th, 2007, 11:19am on 11/19/07 at 11:11:15, naka425 wrote:
Read this: http://www.mushys.com/kudzu/KudzuFAQs.pdf |
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Title: Re: I can't do this anymore Post by ski2k on Nov 20th, 2007, 9:26pm Just a suggestion... If your doc still doesn't wanna budge on the O2, maybe get ahold of the E.R. doc that gave it to you, and have HIM get ahold of your doc. He can tell your doc that he witnessed the attack and the results first hand. That might just help. If he STILL won't budge, see if you can have the E.R. doc write you out a prescription for it. I'd also call around and see if any of the O2 suppliers in your area have any programs for you, if you need to pay out of pocket. I've found they can vary in their prices by quite a lot, so call as many as you can. You may get lucky, and find one like the one I did. They let me have as many tanks as I needed for only $50 per month. Since my insurance had a $2,000 deductable, I ended up having to pay for it anyway. :-/ Just something to consider. Hope you find relief soon!! Adam |
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Title: Re: I can't do this anymore Post by thomas on Nov 21st, 2007, 9:15am If you're afraid of going to sleep, try melatonin again, you might want to mix in some "time-release" melatonin with the regular type, take it about 2 hours BEFORE you want to go to sleep, and take a nice hot steamy shower before bed as well. I would try and get off the trex as soon as possible, if you are having more CH attacks, it is quite possible you are getting rebounds from the imitrex. I spent 8 years taking imitrex and those were the hardest of my 15 years dealing with this. Get some O2 and fast. |
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Title: Re: I can't do this anymore Post by brewcrew on Nov 21st, 2007, 10:41am on 11/21/07 at 09:15:28, thomas wrote:
Or try mixing in 25-50mg of Benadryl (get the generic stuff - much cheaper, same ingredient). |
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Title: Re: I can't do this anymore Post by naka425 on Nov 21st, 2007, 10:55am Well after my ER expirence I called the Doc and she sent me some free shots untill i get to the Nuero. She aslo told me to take 800 mg of I buprofin every 8 hours.. Ith i bu doenst seem to help. BUT my aunt suggested I go to this doc who deals in Natural medicine. He said he has treated cluster headaches. So I am headed to see him today at 6. Wondering if anyone else has gone this route? |
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Title: Re: I can't do this anymore Post by thomas on Nov 21st, 2007, 11:22am Well, I am trying a "natural" route right now, and I suppose the last three years I've been pretty natural - preventives were melatonin and magnesium. |
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Title: Re: I can't do this anymore Post by naka425 on Nov 21st, 2007, 11:26am I have tried Meletonin before.. It just didnt work.. Are you still having Pain with the "natural route"? I guess at this point I dont care if its natural or not... I just want something that works. I guess this doc does alot in chinese medicine. |
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Title: Re: I can't do this anymore Post by thomas on Nov 21st, 2007, 11:34am Yes I am still getting attacks, but today seems to be better, I am doing the RC seeds method. How much melatonin were you taking, and when were you taking it? |
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Title: Re: I can't do this anymore Post by naka425 on Nov 21st, 2007, 11:54am I took whatever was suggested on the bottle. I took it before bed. I think.. It was a few years back that I had tried this. Amoung many other things. If your still having attacks... what do u do? Just suck it up and live through the whole attack? Nothing to abort it? In 3 years?!?!? |
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Title: Re: I can't do this anymore Post by naka425 on Nov 21st, 2007, 12:03pm Also I read in your who is who amoung newcomers that you felt like an imtrex junkie.. Thats where I am at.. I swear the pharmacy has some sorta conspiracy against me. They give me a hard time when i get shots every 2 days. And.. Sometimes I call to see if they have shots.. they ask my name then tell me no... I seriously am a imitrex adict. :-/ |
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Title: Re: I can't do this anymore Post by thomas on Nov 21st, 2007, 12:16pm on 11/21/07 at 11:54:13, naka425 wrote:
No, I've been using zomig. It gives you longer pf times between attacks than imitrex, BUT it can still cause rebounds. Also O2, but I've not done any zomig this cycle and haven't done O2 since Thursday (tank's empty), so yeah, I've been sucking it up this week. As far as the melatonin goes, you want to take from 9-18 mgs 2 hours before bed, that should get you through the night. you have to play with the dosages, it has helped a LOT of people here. Don't pass it off, because it didn't work one time a long time ago. It can literally change your life. |
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Title: Re: I can't do this anymore Post by thomas on Nov 21st, 2007, 12:18pm on 11/21/07 at 12:03:17, naka425 wrote:
That's probably why this cycle is so bad too. I will never, EVER take that poison again. |
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Title: Re: I can't do this anymore Post by brewcrew on Nov 21st, 2007, 5:14pm on 11/21/07 at 12:18:09, thomas wrote:
It's not poison, my friend. It helps a LOT of people. You may have an opinion about it, but there are many people around here who don't share that opinion. And for the record, I've never taken it, so my opinion is based only on my observation of others. |
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Title: Re: I can't do this anymore Post by thomas on Nov 21st, 2007, 5:23pm on 11/21/07 at 17:14:31, brewcrew wrote:
Trust me there are MANY people here who share my opinion. |
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Title: Re: I can't do this anymore Post by brewcrew on Nov 21st, 2007, 5:44pm on 11/21/07 at 17:23:59, thomas wrote:
That may be true, but poison, by definition, helps nobody and hurts all it touches. That cannot be said for trex. |
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Title: Re: I can't do this anymore Post by thomas on Nov 21st, 2007, 5:52pm on 11/21/07 at 17:44:26, brewcrew wrote:
Well it's poison for me. All it does is give me more hits with greater intensity and longer cycles. Sound like a miracle to you? |
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Title: Re: I can't do this anymore Post by brewcrew on Nov 21st, 2007, 5:57pm on 11/21/07 at 17:52:08, thomas wrote:
Look, I don't want to argue with you over what boils down to the definition of the word "poison." I get it that you hate the stuff. I get it that there are others who do as well. The definition of a word isn't just about your experience, however. There are others whose lives have literally been saved by it. That's all I'm saying. |
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Title: Re: I can't do this anymore Post by Kevin_M on Nov 21st, 2007, 7:58pm on 11/21/07 at 17:57:02, brewcrew wrote:
Yes, my days before any preventative saw a lot of daily Imitrex use when it was all I had, but needed. While still episodic, more frequent, all high intensity coupled with the longer abortive time of the nasal spray was a tough time. Now with a preventive med and oxygen, sparing use of Imitrex has been strictly very helpful. Quote:
naka425: Sometimes with also a higher frequency, that could be because of using Imitrex very often. It's very important to add a preventative and oxygen. Ice packs were my only respite having just Imitrex. Those higher doses of melatonin Thomas mentioned could be helpful until the neuro appointment. |
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Title: Re: I can't do this anymore Post by LukeAlberts on Nov 21st, 2007, 11:43pm I'm sorry you're suffering as you are, naka. My name is Luke Alberts and I too have suffered cluster headaches for a long time, always localized to the same side of my face, head, and neck, and usually during the same season (autumn). I'm convinced that they in part result from changes in barometric pressure. I've tried several medications including Ergotomine (too toxic!), Butabital (effective but addictive. It is a barbituate.), pure oxygen (somewhat effective). I'm afraid of Imitrex because it is so habit forming and expensive. Someone recently suggested what's known as Gamma Knife surgery. Has anyone tried this? Does it work? It's basically gamma rays fired into ones head. Terrifying! Didn't anyone read The Incredible Hulk comic book growing up? I'm back to taking Butabital -- SPARINGLY --and far too much caffeine.: 4 to 5 cups of coffee per day. The coffee helps regardless of what stage in the Kip cycle I am. If I can somehow yield all of my insane deliberations of drawing blood out of my temple with a syringe at the height of the cycle and somehow get some coffee in me I have a fighting chance of overcoming the cluster.. I really want to change this pattern and "treatment" as, I'm sure, do we all. I'm so grateful I found this site. |
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Title: Re: I can't do this anymore Post by LukeAlberts on Nov 22nd, 2007, 12:03am I meant to add that the other night I suffered a c.h. without any kind of medicine or access to it. I was on the subway here in New York. I ended getting off the train early and walking home almost 3 miles. Usually I can't get out of bed once in the throws of a c.h. but somehow I held it together to get home. I've lived with these monsters for almost 20 years and maybe now I'm just starting to defeat them. |
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Title: Re: I can't do this anymore Post by naka425 on Nov 26th, 2007, 2:40pm I couldnt "quote" everything that was said about Imitrex. Bc my post would be forever long. BUT I'm on both sides here. Imitrex is the ONLY abortive I have at the moment. In the torture of a CH I will take it. It does work. BUT I do believe I am having rebound headaches from it. Knowing this does not stop me from grabbing my pen and injecting myself during a headache. Why? Because I KNOW it will go away with the shot. I also KNOW I will get another headache. But the relief I get seems worth it rather than sucking it up. After months of CH I dont think I could suck up another one without any abortive treatment. Also I read alot about acupuncutre on here. Unfortunitly when I went to the 'natural doc' he happened to be a acupuncurist and talked me into acupuncture. I WOULD NOT let him put them in my face. Which may or may not have defeated the purpose. Anyways I didnt notice a huge change in my headaches. Negative or Positive. I am going to try it one more time. I am also headed to the Nuero tom!!! I feel like I'm Goin to Disney Land!! I cant contain my excitement! Wierd huh! Last but not least. I have had 2 CH free nights.. |
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Title: Re: I can't do this anymore Post by naka425 on Nov 26th, 2007, 2:47pm on 11/22/07 at 00:03:40, LukeAlberts wrote:
I feel for you on that. I was in Hawaii about 3 years ago with my friends. We decieded to walk the strip and go bar hopping. ( I was unware that drinking was a trigger at that time). Our Hotel was about 1 mile or so away. out of no where a CH came on. ( I also didnt have any abortive meds at that time) Being that we were in Hawaii and all I didnt want to ruin everyones night. Somehow I managed to walk back to the hotel without getting arrested as a drunkin crazy lunitic. I maintained composure untill I made it to the room. After that I lost it. I also dont know how I kept it together. It must just be a mental thing. Not wanting the world to see you pain. So you suck it up? Idk.. But I hope all is well with you. |
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Title: Re: I can't do this anymore Post by Sean_C on Nov 26th, 2007, 4:25pm on 11/21/07 at 17:14:31, brewcrew wrote:
When I first used trex, I called my doc in disbelief. I went 10 years in agony with literally THOUSANDS of clusters under my belt, and I took one shot of trex and my cluster was gone 5 minutes later, it was an unbelievable feeling, I remember it like it was yesterday. Back to the original trex question, why don't you use syringes naka. I can get maybe 4 attacks out of one vial of trex. It takes a little longer to work, but you can abort more attacks with the prescribed amount per day. I also use my clustermasx with my 100% o2, and lots of ice bags. I also wait while using just my o2 and ice until my cluster is at a kip 3 and building before I take my trex. Sometime I can get lucky and the o2 works perfectly, other times it needs a little help. Just for the record, I have no problems with anyones belief in any CH abortive or preventative. My only issue with any medication is when someone takes more than the prescribed dosage given by the doctor because someone here thinks its not enough. Good luck with your choices naka, lots of experienced clusterheads here, but I honestly think you should discuss all options and changes with your doc. If you want to discuss an medication option, you both should decide, ultimately, he's in charge of your well being. Cheers, Sean...................................... |
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Title: Re: I can't do this anymore Post by naka425 on Nov 28th, 2007, 3:51pm UPDATE!!! I just went to the Neuro yesterday, and I loved him! He upped my dose of Cartia. Wrote a script for O2, wrote a script for trex and I have a follow up in 2 weeks. At last I have some real weapons to use against the beast. My only fear is I am becoming Chronic. My headaches have been going on since August. With only 3 or 4 pfn. That would be hell. Well I hope the rest of you are all having pfd and pfn. I think about you all on a daily basis. With love, Naka |
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Title: Re: I can't do this anymore Post by Jonny on Nov 28th, 2007, 4:17pm on 11/28/07 at 15:51:57, naka425 wrote:
The good news is...is that you wont know if you are until August 08. Hell?.....at first, managable?.....YES! I did chronic for more than 30 years and im still here. I woke up one day two years ago and they were gone. Will they come back?, I dont know....but I never tell the doc I am PF and I just keep stockpiling the meds for the day it does. I had no fear when I was chronic because I always knew they would be there, and I was always ready for them. Now, I fear everyday that they will come back! |
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Title: Re: I can't do this anymore Post by Rosybabe on Nov 28th, 2007, 4:24pm maybe your cycle is getting longer because you are having rebound headaches. Once you start the O2 you will need less and less trex and you will be able to see if this breaks the cycle. Good luck to you and pain free wishes! Rosy. |
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Title: Re: I can't do this anymore Post by naka425 on Nov 28th, 2007, 5:54pm on 11/28/07 at 16:17:55, Jonny wrote:
How Aweful... I dont think I could live with them everyday.... I get so mad now when I get them.. which only makes the pain worse.. I hope you never have to go through that again!! Being prepared or not.. its just an aweful feeling to fear sleep.. |
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Title: Re: I can't do this anymore Post by jillemain on Nov 29th, 2007, 10:09am ~ Just letting you know that it's time for the liquid gold to come out of the closet. Check my post on "exta imitrex" - Jill |
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Title: Re: I can't do this anymore Post by naka425 on Dec 10th, 2007, 3:33pm Just an update. Since I went to the Neuro.. I seemed to have stopped my cycle. So the bad news is IDK if the O2 and other meds my doc gave me will help the next time around. Good news is... I've been pain free for 2 weeks :)!! wishing you all PFDAN Naka |
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Title: Re: I can't do this anymore Post by DennisM1045 on Dec 11th, 2007, 1:19pm That's awesome news Naka! I hope your break is a long one. At least you have some tools if he does come back. PFDAN to you. -Dennis- |
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