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Title: Noobie... Post by Neko on Sep 17th, 2003, 11:12am Hi my name is Joey i am a 21 y/o male that has just been told by my family dr that i suffer from cluster headaches.... until i was told that i knew nothing about this crazy pain until i got here.... well after going thru MANY bottles of Asprin and all the other over the counter junk i am still hurting. It almose makes me feel like i would be better off dead, not contomplating taking my own life.... But my CH's are so damn intense that i wake up at 3 am and am forced to go take a shower.... steam is the only thing that helps. the hot water is always turned full blast while the cold isnt even on. first my hand starts to twitch, then my temple aches then i get sensitive to light then the real deal starts, amazing pain on the left side of my head for what seems like a week. but in all reality is a couple hours. so my question to you guys/gals is what do you do when u get a headache? what works? is there something majorly wrong with me? I dont mean to sound scared as hell but i am. thanks in advance, Joey |
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Title: Re: Noobie... Post by aprilbee on Sep 17th, 2003, 11:20am I take my meds and then, like you, get into the shower, but I go from very hot to very cold in intervals, like two minutes of cold then two minutes of hot, its an old homeopathic remedy....it seems to help a little, Oh, by the way, welcome to the site, lots of understanding, and support here. Hope you find some relief soon sweetie!! |
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Title: Re: Noobie... Post by Hirvimaki on Sep 17th, 2003, 11:36am Welcome, Neko. I'm sorry you have to be here, but happy you found us! This board has incalculable value to those of us with CH. I hit my O2 as soon as I feel the evil clown start chewing on my brain. 80% of the time it either stops it or turns down the KIP to a more manageble level. When the O2 doesn't work (or I'm not able to get to the O2) I have Imitrex handy. Good luck to you. And, again, welcome. Read, read, read. You'll find a lot of helpful stuff here. |
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Title: Re: Noobie... Post by Neko on Sep 17th, 2003, 11:36am what meds? do any of my symptoms sound about right? these things remind me of that movie PI where sound and light are the worst things u can have. i cant tell u how many showers i have taken in the total darkness.... but it seems asthough i can still see light??? that sounds crazy but brigth white lights in the corner of my left eye. but not before my hand twitches then the side of my head hurts. Then comes the pain but by that time im either hauling ass home to get into the shower or im already in. my water bills is gonna be crazy high but im sure i would give my right arm to get rid of these suicide headaches. I also am a DJ so that means that most nights i have lots of loud sound flashing lights and fog. i always leave with a headache. This shit sucks. :-X |
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Title: Re: Noobie... Post by Neko on Sep 17th, 2003, 11:37am I am also a smoker..... :-[ it seems asthough Imitrex made my heart race. i guess i need to get some 02 then... |
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Title: Re: Noobie... Post by Donna on Sep 17th, 2003, 11:53am Glad you found us, and if you will read the information that we have compiled in the left margin, you will find something that helps you. 1st you need to find a doc (preferably a neurologist) who understandss cluster headaches. Yours obviously does not! It's a sad thing, but a great many docs do not and many of us go years without the right treatment. Take the cluster survey......read up on the meds both here and on the OUCH site.......make copies to take to your doc. It is very important that you educate yourself and speak up for yourself when being treated. Over the counter meds and pain meds have little or no effect on clusterheadaches. Let us know how you are.......we'll be pulling for you. |
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Title: Re: Noobie... Post by ClusterChuck on Sep 17th, 2003, 12:05pm Neko, sorry you had to come here, but welcome aboard. One of the first things you need to do, right now, is to go to the button on the left side of your screen called "cluster quiz" and take that quiz. It is not a definative diagnosis, but can help you see where you stand. The next thing you need to do is go to a compitent neurologist and get a full set of tests to verify that nothing else is causing this pain. It helps if you find one that has experience in dealing with Cluster Headaches. Cluster Headaches do not kill, but other things, that can cause like symptoms, can. After a CAT scan and MRI and full evaluation with your neuro, you can then go from there. Unfortunately, it sometimes takes time before the correct drugs, or combination of drugs, can be found to work for you. One of the most effective and safest is plain old oxygen, but it must be used in the right manner. Any other way will not work. Go to the "oxygen info" button on the left, print this out, and then bring it with you and see if you can get your doctor to prescribe it for you. Many of us have had this for many years. You need to get fully informed by reading all you can here, and on the O.U.C.H. web site. While you are at the O.U.C.H. web site, why not join? There is mucho information there and here. Good luck, and keep us informed. we care. Chuck |
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Title: Re: Noobie... Post by Smurf on Sep 17th, 2003, 12:26pm Donna has given you great information. And the first thing is to call around for a good doctor. When you call, ask the receptionist if the doc. has treated people with CH and how. I've just pulled out of my cycle, but when I'm in it, forget disco balls. I ordered my DJ at my wedding NOT to even bring one. Do not look at flashing lights, like the ones on school buses. Turn your head and do not look into the light! ::) I smoke, too. Typical meds are Verapimil, Lithium and during an attack, O2 and Imitrex (in whatever form, I prefer the pills). The neuro may order a Catscan or MRI, which is good just in case. If you just have CH, they'll turn up normal. Hope you have good insurance! And feel better soon. -Smurf P.S. I think all of us veteran CHr's can agree that having a plan for when you have a CH helps calm you down. Don't worry about your water bill. Whatever it takes to help is all that counts. God will provide and you will be able to pay it. Lay things out ahead of time like your meds with a bottle of water, set up your O2 so the hose doesn't get tangled and you can put it on with ease during an attack. Plug a heating pad in and leave it off until an attack hits. Then you just have to flip the switchy thing. (I'm a cold CHr where I need ice packs, etc.) P.S.S. If your doc. does prescribe the Lithium, watch out about taking hot showers. Let him/her know that you have to take a sauna to get relief. Lithium instructions say to not sweat or get hot! ??? |
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Title: Re: Noobie... Post by Jewel on Sep 17th, 2003, 12:38pm I sent you a private message. |
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Title: Re: Noobie... Post by Neko on Sep 17th, 2003, 4:37pm thank all of u guys for your great support, it really means ALOT to me to know that I am not alone in this. Are CH's passed down from parents? my dad had these for 20 years and i rember him screaming and crying in amazing pain when i was very young.... that image is forever stuck in my head. its now 4:48 after my last post i had another attack right around 12:30 or so. And off to the shower i went, and in a hurry. while i was typing my hand started to twitch then my eyes started to water up. by the time i got into the shower (about 30 secs later) my head was throbing, i guess i got up too fast then i got light headed, next thing i know i wake up to cold water hitting my feet in the dark.... the cold water wasent even on. i had passed out until the hot water ran out. but i wasent awake long enough i guess for my head to start hurting. so thats a good thing i guess but does anyone else pass out? or do i just go to sleep? normally when i get a CH i pace back and forth banging my head against the wall crying, my g/f really gets freaked out. I guess because she dosent understand. but really nither do I. Thats why im here. I have to work 2marro night, 8pm til 4 and im scared as hell that im gonna get a headache. we have tons of lights and massive sound. but we also have an 02 bar in the back, so i guess it could be worse....... maybe i will try it out but i reallyyyyyyyyyyy hope i dont have to. thanks again for everyones support, it means soooooooo much to me. :) |
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Title: Re: Noobie... Post by Prense on Sep 17th, 2003, 6:08pm on 09/17/03 at 16:37:15, Neko wrote:
That is not normal at all... Did you take the quiz on the left yet? IMO, you need to get to a neuro! |
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Title: Re: Noobie... Post by Prense on Sep 17th, 2003, 6:22pm on 09/17/03 at 12:26:33, Smurf wrote:
Really?? Hrmmm...I might have to rethink things. |
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Title: Re: Noobie... Post by Ree on Sep 17th, 2003, 7:21pm hi Joe... sorry you have to go through this at your young age... hang in there if you are eposodic the attacks will stop after a while. You just have to have a good plan of attack back. First you have to get some of the information off this site and bring it to your doctor til you can get to a Neurologist. Then you need to have that doctor get you on a preventative med... some take Verapamil, my husband takes Neurontin. The Neuro will also probably want to give you an abortive medication like Imatrex or Zomig or Amerge... these are very helpful but it would be also good if you tried 02. I know I am probably repeating some of the stuff that others have printed here. but I didnt read allllllllll of the posts on this thread. It is best to KNOW that you arent alone. There are usually people here 24/7 so if you get that idea again about not wanting to live anymore come here and just post. Hang tough. We are all here for you. Take care Love Ree ( a supporter for about 15 years) |
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Title: Re: Noobie... Post by Miss_Deleny on Sep 17th, 2003, 8:43pm Welcome Joey! Sorry you had to look for us but glad that you found us. There isn't anything that I can add that the others before me hasnt already said. Wishing you PFDaN's, ~April~ |
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Title: Re: Noobie... Post by Neko on Sep 17th, 2003, 9:22pm 9:31 i have just eaten for the first time in three days and just got my first sound sleep that i didnt wake up with a CH. god it feels great. I really thank you all for your support, theres nothing quite like other people that know what ur going thru. when i have my headaches it feels like somebody is taking a hammer to my head over and over and over and over and..... i read somewhere on this forum about vicks vapor inhaler helping some... so i sent my g/f out to get some and that seemed to help out for a minute but that stuff is addictive isnt it? what else besides that and 02 can i buy over the counter that will help before or during one of these crazy HA"S |
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Title: Re: Noobie... Post by cootie on Sep 17th, 2003, 10:28pm Hi Joey (onea my favorite names there too)...anyhow.....lot of the over the counter pain meds may cause you to hae rebound naggin ha's.....I'm a supporter but I even noticed that when I'd take alot of advil's ect for sinus ha's ect. There's not any meds I know of over the counter that really help ch but am sure others will advice you on that. Hey can you maybe wear sunglasses when DJ'n.....would that maybe help with the lights hurting yer eyes ? It'll help with ha's but not sure with yours but worth a thought.....at least cut down on suma that flashing.......that'll give alot of people an ha that don't normally get em...bothers me ! Good luck to ya and get to a good doc or neuro that an help you find sumthin that works......that'd be a good start. Pam that doesn't disco but is stayin alive |
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Title: Re: Noobie... Post by Melissa on Sep 17th, 2003, 10:35pm Aleve doesn't cause rebounds, I used it for my shadows inbetween attacks. I'd need 4 pills a day for them to work though, 2 mid morning and 2 an hour before bedtime. I know it says on the bottle not to take more than 3 in a 24hr period, but I never listen anyways ::) |
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Title: Re: Noobie... Post by Neko on Sep 17th, 2003, 10:40pm WOW!!!!!!!!! i would have never thought of sunglasses!!! that really is a great idea, im not sure how well it would work but at this point i would go blind folded! ;D (almost) at this point im planning on going in an hour early and hitting up the 02 bar for about 45 minutes before my set. takin a few asprins and sportn my sunglasses. maybe it will work maybe it wont but that really is a great idea.... thank you p.s what is onea |
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Title: Re: Noobie... Post by Neko on Sep 17th, 2003, 10:45pm Mel, I havent ever read the bottles but last week i actually counted 9 that I took for MANY all day CH's and about 20 showers. after they were all over as i got into bed my heart started to race and my body felt like it was "tingaley" the only way i can decribe it is like a very light rain indoors.... or maybe even like goose bumps but for hours.... twas weird indeed.... :o |
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Title: Re: Noobie... Post by BH on Sep 18th, 2003, 3:15am G'day Joey, much like yourself i thought i was strange getting these intence headaches everyday for months at a time, every day no matter what, but don't let the buggers get on top of you dude your not alone, as i found out when i found this site. Theres lots of great tips to be found by listening to what all the people here have to offer, some things you will find will work others wont. From my own experiance oxygen works wonders and has no side effects like most meds, another was accupuncture i found that this often broke my cluster(not every time but some times and again no side effects!) but the 1 thing that never fails to get rid of the present headache is the imigran injections IF YOU CAN AFFORD IT!! But it dosn't brake the cycle. Hope my 2 cents worth can help you to get a few headache free days ;D |
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Title: Re: Noobie... Post by 2late on Sep 18th, 2003, 6:44am welcome aboard joey! 02 works for me ......abort's 95% of all attacks. good luck to ya! ............Jack |
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Title: Re: Noobie... Post by Neko on Sep 18th, 2003, 8:10pm Hey all just wanted to let you all know that i made it to work and started my set after about 30 minutes at the 02 bar..... I never really knew how cool that was without a CH... got all my stuff that will HOPEFULLY prevent an attack.... even my sun glasses.... wish me luck! thanks again for everyone caring so much.... :) |
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