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Title: freaked out Post by lexi919 on Oct 18th, 2007, 4:54am i just freaked out. it is 4:48 a.m. and i have been in this cluster for about a month now. i could not deal w/ the pain anymore i went and started crying on my wifes shoulder while she was sleeping. good gosh i said to myself what did i do to deserve this beast. i am sitting here with a cold compress on my left temple typing w/ my right hand. i am just venting. thank you for listening. here comes a double. it is starting back up again. |
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Title: Re: freaked out Post by aloneuk on Oct 18th, 2007, 5:09am hang in there buddy we hear ya! it WILL pass can i ask what meds you have tried ? tell us a little about yourself we can and will help you ! ike |
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Title: Re: freaked out Post by lexi919 on Oct 18th, 2007, 5:15am forgot to reintro myself i forgot my pass i am horrible with those the doc has me on prednisone and imitrex inject. this is only my second cluster episode the last one was 2 years ago same time of year at the weather change. sorry if i am random right now i cannot really see out of my left eye and i am trying to keep it together for round 2. i will be back need to pace for a while. |
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Title: Re: freaked out Post by ski2k on Oct 18th, 2007, 5:17am Hang in there!!! :( Sending lots of vibes your way!!! We all feel like that from time to time: "what did I do to deserve this?"... There is no reason to feel alone!! Like Ike said... When you're feeling up to it, Tell us a little about yourself, and what meds you have tried. Chances are, one or more of us can offer suggestions you may not have tried. Be well! This WILL pass, and you WILL feel better soon! [smiley=hug.gif] Adam |
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Title: Re: freaked out Post by Wayne on Oct 18th, 2007, 5:35am Hey Lexi, we know here you're at, I know words aren't going to take the pain away but at least you know you're not alone. I guess you're new on the Prednisone so it'll take a while to kick in. The only help I can offer is get hold of a couple of cans of Redbull and swallow them, it may help you. Hang in there mate, this too will pass! |
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Title: Re: freaked out Post by Smurfysmurff on Oct 18th, 2007, 5:41am hey lexi, Have you tried taking a shower? Either hot or cold. A cold shower sometimes helps for me, but others have said a hot one works for them. Hope you find something to help you. [smiley=hug.gif] Rane |
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Title: Re: freaked out Post by BarbaraD on Oct 18th, 2007, 6:32am If you don't have any Red BUll handy, put on the coffee pot and brew some stong black coffee -- down a couple of cups and see if that helps some. Get some caffeine in you fast. Are you on O2 -- if not CALL your doc and get some (15 liters with a non rebreater mask). First defense. About 10-15 minutes of this (get a LONG hose so you can pace with it). We all know where you're coming from cause we've been in the same spot (and some of us are there now). Hang in there - it WILL get better. Hugs BD |
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Title: Re: freaked out Post by chewy on Oct 18th, 2007, 6:37am Quote:
Without a preventative? |
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Title: Re: freaked out Post by sldrswyfe on Oct 18th, 2007, 9:08am So sorry Lex... :'( and don't feel bad with crying,etc..we all do it. Great advice above...and 0xygen...YES...a must. Hang in there. We know exactly how you're feeling. |
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Title: Re: freaked out Post by sandie99 on Oct 18th, 2007, 10:22am Lots of PF wishes coming your way! [smiley=hug.gif] Sanna |
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Title: Re: freaked out Post by Guiseppi on Oct 18th, 2007, 10:51am Another vote for oxygen guy. You can't believe how much power you feel looking at the green E-Tank knowing more times then not you can kick the beasts ass with it. What Chewy means is the pred and trex should only be a part of your plan. You need to be on a good prevent, lithium, verapamil, topomax, something to cut down on frequency and intensity. For now stock up on Red Bull and slam those, might buy you some relief, hang in there, we are all with you. Guiseppi |
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Title: Re: freaked out Post by Paul98 on Oct 18th, 2007, 10:54am Hang in there. Educate yourself as to the different meds available and go to a competent Dr. and plan a course of treatment. You need abortives and preventitaves. O2 is high on the list of abortives. The next thing to do is UNDERSTAND CH. After you understand CH you need to learn to live a normal life with it. I went through the same thing 22 years ago as you are going through now. If you can do the above and get a good treatment plan you will be in control of the beast and not the other way around. In the mean time hang in there...you are in good company. -P. |
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Title: Re: freaked out Post by Gator on Oct 18th, 2007, 11:02am Sorry you're hurting. I hope you can get it under control soon. Maybe these will help... Read this and then print it and give it to your doctor: http://www.plainboard.com/ch/chtherapy.pdf There's also a lot of good info on O2 on these pages: http://www.ouch-us.org/medications/oxygen/o2links.htm http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm http://www.headaches.org/consumer/topicsheets/oxygen.html http://www.chhelp.org/mhni.html You are your own best advocate. Do some research and demand proper treatment. Good luck, Mike |
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Title: Re: freaked out Post by sldrswyfe on Oct 18th, 2007, 11:27am More great advice and great resources provided by Gator... And yes "Power"...while looking at that tank...great example Sarg. Also helps with the panic aspect...knowing you have an effective weapon. |
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Title: Re: freaked out Post by Rosybabe on Oct 18th, 2007, 11:46am Lexi , I am so sorry the beast is holding tight right now :'( praying for your cycle to be the shortest ever.... Try to get the O2, and try some melatonin.... Don't feel bad about about crying, sometimes is the only way to let the frustration out, you are not a less man for doing it, you are just a human being who is suffering... May God send you relief soon... Hugs Rosy. |
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Title: Re: freaked out Post by DennisM1045 on Oct 18th, 2007, 12:39pm You are not alone Lexi. However you do need a more complete set of weapons. People here have given you some great advice. I hope you get a break soon. -Dennis- |
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Title: Re: freaked out Post by Callico on Oct 18th, 2007, 5:16pm The only thing I could add would be to try Kudzu. For me it works better than Verap, and without the side effects. Red Bull slammed at the first sign of attack helps me also. O2 is definately something for you to try. Jerry |
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Title: Re: freaked out Post by aceserve on Oct 18th, 2007, 6:38pm Oxygen is obviously effective. I was about to try it but my episode dissolved early this last time before I got a mask/regulator and gave it a whirl. At night before you go to bed, reboot your body clock by taking a bunch of melatonin. I think i was doing about 8mg. If you wake up with a cluster brewing, down a red Bull real quick with another couple mgs of melatonin, and have the 02 and Imitrex handy. Peace. |
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Title: Re: freaked out Post by barry_sword on Oct 18th, 2007, 6:51pm Hang in there, the pain will stop. I started a Prednisone taper at the start of this cycle and asked for 480mg Verapamil daily with a o2 script with a 15LPM regulator and a non-rebreather mask from my Neuro and got all three requests. My Neuro is the best!! I am sitting here typing still in cycle but PF for the most part. I have found my cocktail! You will too. Take care, you are not alone. |
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Title: Re: freaked out Post by Charlie on Oct 18th, 2007, 9:58pm Very sorry you have to deal with this horror. You'll find a lot of good ideas here as well as friends that like to listen. Although you may have seen it, here is the technique that worked 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: freaked out Post by ClusterChuck on Oct 18th, 2007, 11:36pm Lexi, SO sorry you are getting nailed! But what you did is nothing new to any of us. Go ahead and do it. Most of us have cried, and many still do during a hit. Nothing to be ashamed of. But as others have said, you need to build up your arsenal to fight the beast. Oxygen is a GREAT start! But do your reading and research. If your doctor is like most of our's is, YOU need to educate him/her on what to do. If your doctor fights you, and refuses to take suggestions, or read the things you print out for him/her, get another doctor! Doctors are NOT Gods, and if yours thinks he/she is, dump him/her! One of the most powerful tools, is your own head and mind! Learn all you can. NEVER let the beast win! These things can't kill you on their own. You can survive them, and live a fairly normal life. Three enormously important weapons are as follows, by order of importance: Attitude Attitude and finally, Attitude ... You are new to dealing with the beast, ask any questions you want. If you need or want to talk to someone, I can send you my phone number, and I would be happy to talk to you any time, day or night. Interacting with fellow sufferers or supporters is what has kept me sane (sorta ... LOL) ... Use us. We want to help. I, myself, have been battling the beast for 28 years. Many on this site have more years dealing with the beast. Any one of us want nothing more, but to help someone who is having a hard time, to help deal with it. But don't expect us to be all sweet and nicey nicey to your complaining and whining, all the time. We all do it, and we all deserve to do it. But if it gets to be too much, one of us will smack you up the side of the head, and tell you to stand up, and fight. We do it with love and consideration, but there are times, when you may need that smack up the side of the head! I know I have gotten it many times, and 99.999% of the time I deserved it! Cry, whine, bitch, scream, holler, yell ... Get it out. Then buckle down and DEAL with this. None of us asked for, nor deserve this hell. But this is the hand that was dealt to us. Now play the hand out. Get on with your life. (Pushes soap box back into the corner ... ) Welcome to the site, learn and enjoy! The secret handshake will be sent to you soon, sealed in a plain brown wrapper ... Chuck |
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Title: Re: freaked out Post by lexi919 on Oct 19th, 2007, 1:13am you all rock and thank you for the light reading gator. last night i dealt with round 2 and collapsed in the bed and did not wake up until 9:30 so i could get to work. so here i go i am 29yrs old married 1 kid just turned one and between her and my wife they are my life. i am a gun nut, love to hunt,fish,work on anything that needs to be fixed,build just about anything out of wood. oh yeah i like bourbon but i learned last time about 2 yrs ago that i cannot drink anything when i am i a cluster. smoke cigs that too i cut back on alot when i am in a cluster. my name is matt, lexi came from my daughter alexandra kennedy. i have been on prednisone a couple of times no preventatives, imitrex nasal zomig nasal, imitrex injectable, in the beginning the doc gave me fiorcet and relpax and they did nothing for me.i think i covered it all any questions just ask. and thank you all again. |
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Title: Re: freaked out Post by Tara Ann on Oct 19th, 2007, 3:07am Hi Matt and welcome aboard aka the nut house ;) . What great support you had last night! I hope you are getting some better rest tonight! Why aren't you on a preventative? I've tried just about everything myself, currently I'm giving topamax and keppra a try. Well I hope your episode is short and stick around this is a great place to make your second home/family. Truly these ppl are the best of the best. Cream of the crop 8) |
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Title: Re: freaked out Post by lexi919 on Oct 19th, 2007, 3:16am i will be on the phone in the a.m. with my neurologist to get started on something i am going to take " the light reading material" that gator provided for me to my doc and get put on a preventative. thank you so much again. good times so far tonight. |
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Title: Re: freaked out Post by George_J on Oct 19th, 2007, 3:21am Can't add much to the good information you've received so far, Matt, but just wanted to welcome you to the nuthouse. Best wishes, George |
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