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Title: I just want the doc to listen- Post by headoftheclass05 on Jan 6th, 2005, 5:50pm wow im glad i came on-line today. ch.ocm may have saved my life. im 22 years old and have had almost a steady headache b]since dec 7[/b]. i went to the hosiptal and thay dicharged me told me to go home then i went back again and treated me like i was some kind of drug addict and i hate medicine, i hate needles and now i hated doctors when before i could barely tolerate the good ones trust me. i was in so much pain i cried talking on the phone with my mom where the tv in the living room was on which at my mothers house four rooms away in the kitchen(she said she couldn't even here it) i honestly thought i was going to die and i think this is worst than death some days. i have been the strongest person i know since i was a kid. and now i feel so weak. i stay awake at night because im so scared to have headache that i cant sleep. and they still come. i thought i was going to have to be commited because i was in so much "invisable" pain and knowing now that i could be in pain the rest of my life isn't a picinic but what is. i told the both doctors and nurses when i was at the hospital that it wasn't a just headache ... especailly when every breath was/is killing me. It dosen't surprise me that this is sopmething that supposedly effects overachivers and professionals. Because this stopped me dead in my tracks im scared to leave my house now becuase i don't want to go crazy in the store or at the gas station. so how do i get people to listen to me especailly the doctor going to the hospital is too expensive and no agency will help me i need to find some type of solution to this pain to this agony which is tearing my mind literally in half. where do i begin ................ allergy test, more blood work, the doctor says im not disabled just temporarily out of whack if that make sense i guess im pissed at my body and just want the pain to stop. when did doctors helping people stop being part of their job?[/color] |
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Title: Re: I just want the doc to listen- Post by guesst on Jan 6th, 2005, 5:51pm Try some O2. |
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Title: Re: I just want the doc to listen- Post by headoftheclass05 on Jan 6th, 2005, 5:55pm oxygen right where and how do i get it |
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Title: Re: I just want the doc to listen- Post by guesst on Jan 6th, 2005, 6:10pm click on "oxygen info" on the left. And try some melatonin before bed, it can stop the night time attacks. |
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Title: Re: I just want the doc to listen- Post by headoftheclass05 on Jan 6th, 2005, 6:33pm thanks i read alot of the info and think i may look more on the open net. |
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Title: Re: I just want the doc to listen- Post by headoftheclass05 on Jan 6th, 2005, 6:40pm thank you for listening or rather reading my sad and angry illustratrion of happiness knowing im not by myself and distraught feelings at the pain. i hope i haven't affended anyone in the process. |
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Title: Re: I just want the doc to listen- Post by LeLimey on Jan 6th, 2005, 6:41pm hello hotc! I'm sorry you are suffering. Unfortunately sometimes you get a doctor who has no empathy whatsoever and you do wonder why they go into the profession! Anyway there is loads of info here that should help. First of all I would strongly recommend you take the cluster quiz on the left. There is a link to another quiz which is very good too as it lists all types of possible HA's. Some otheres resemble CH closely and are also very debilitating but can be treated successfully with very different meds to those that work for CH so its very important that you get diagnosed with the right thing. You have already said you hate meds and needles etc ( right with you there!!) so I'm sure you don't want to take something that isn't ultimately the best treatment for you. What symptoms do you have? How long do the HA's last and how often do they come? I know I'm a nosey old bag but the more info you give us the more we can help. I'm sorry you are here.. I hope we can help! Let us know how you get on with both the quizzes, I hope they help you find some answers Take care for now Helen |
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Title: Re: I just want the doc to listen- Post by RichardN on Jan 6th, 2005, 9:09pm What Helen said . . . Take the quiz . . . and let us know. Look at the "kip scale" (6th button down on the left) How many per day/night, duration, intensity (KIP 7-8, etc). Have you identified any triggers - for many, me included, alchohol is one, chemical fumes, cigars smoke . . . .can be anything. If you indeed have CH, this the place to be. I went through over a year of mis-diagnosis, tests, non-working meds before finding this site. There's help here. PFDANs Richard |
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Title: Re: I just want the doc to listen- Post by Langa on Jan 7th, 2005, 9:18am Hi and Welcome! I know how you feel regarding doctors. After 26 years of suffering with these cluster headaches I just this week found an understanding and well informed Neurologist. Yes, this pain if left unmanaged can make anybody crazy, but it doesn't have to be like that. Oxygen, again, has been a life saver to many of us. Melatonin, which you can buy at any GNC combined with Benadryl has helped reduce or stop night-time hits in many of us, Magnesium and water, water, water. Just some things that help. Don't give up until you find what works for you. Langa |
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Title: Re: I just want the doc to listen- Post by Bill-G on Jan 7th, 2005, 12:23pm Howdy HOTH05 Sounds like a visit to a new doctor may not be a bad idea. A neurologist, not a gp. If you look in the yellow pages of your phone book there will probably be listings for 'Headache Centers' to. Personaly I think of a doctor like any other service for which I pay a fee. I don't go back to bad restuants, mechanics or movies...or doctors that either wont listen or cant make progress or at least inspire confidence. The more information you can provide to the neurologist the better the chance of a correct diagnosis. Start keeping a headache diary. Times, triggers (if known) duration of attack and intensity. Describe the attack from onset to its end to. Hope you find relief soon :) Take care Bill |
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Title: Re: I just want the doc to listen- Post by Gator on Jan 7th, 2005, 1:17pm HOTC, Welcome to the website. Sorry to read of your troubles. You mention having a near constant headache since Dec 7. Is this a series of one terrible headache after another or is it literally one headache that lasts for hours/days/weeks. Describe your condition in terms of each individual headache. If it is a series of shorter headaches, how long does each headache last? Where is the pain located/centered? How severe is the pain? Are you sensitive to light and/or sound? Are you having nausea? Also, what do you mean "every breath was/is killing me." I'm not trying to say or convince you that you don't have CH. Just trying to get a feel for what you are going through. As has been said, it is very important to get a proper diagnosis. Many headaches, while very painful, can be easily treated. The medications for some types headaches do nothing for others. As far as future steps and tests - your next step, should be to find a doctor that is well versed or even specializes in headaches. Sometimes this is the hardest part. S/he should know what tests need to be done. I have had blood tests, dental examinations and x-rays, eye examinations, pulmonary function test, sleep study and an MRI. The only problem found was that I apparently do have sleep apnea. Lots of questions and lots of reading ahead for you. I wish you good luck and pain free days ahead. Gator |
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Title: Re: I just want the doc to listen- Post by guesst on Jan 7th, 2005, 1:18pm If you notice though, he's afraid to go out, because he will look like he's going crazy. And he talks about being woken up right after sleeping, I think our man does in fact have ch. |
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Title: Re: I just want the doc to listen- Post by headoftheclass05 on Jan 11th, 2005, 4:13pm thank you all of you :-* so heres the clarifications i have a series of headaches that last from 2 days to just hours. they start mostly when or after i transitioning into sleep. i also have them after long periods of interaction with talking, laughing, or reading. sometimes i do get them after eating and those last longer. i have intermitten smaller battles as i call them before big headaches and then i might have a great day when i only have aches. i had a couple a sips champaign on new years to celebrate but my headache was just constant during the day didn't get any worse. i have several different types of pain before the headaches. one is the feeling of pressure in my brain. two is clogged ear and extremely dry nose or running nose that dosen't stop. three is a burning sensation in nerves in my face head and around my eye are on are being traced with a simmering needdle i can almost pinpoint the nerve. i also feel beaten up after and during the head aches. i think i have insomnia because no matter what i v tried i cant seem to go to bed before 3 in the mornin now i have a relative amazing week less battles than usual and only one big HA this week it lasted about 2 days to 2 and half. i started driving again yeah and my vission is better[/color]. I' m CURRENTLY LOOKING for agood [color=Yellow]nuerologist but i don't have insurance so im going to be looking for a while. i also took the quiz and hit the link to the HA website and also took thoose quiz's. both suggested cluster and that i see a nuero and a Gp i answer almost all the question "right" on 9-16 on the quiz here and the other site told me to se a nuero and a Gp i hope this is more specific so i can get some more feed back [/color] |
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Title: Re: I just want the doc to listen- Post by headoftheclass05 on Jan 11th, 2005, 4:19pm my kip scale has been from 2-4 daily when i have HAbattles and the 10-11 when i have a big HA WITH MEDS. my great days are 1s i had only in a month maybe two- three 0 days now im a about a 1and a half |
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Title: Re: I just want the doc to listen- Post by vig on Jan 11th, 2005, 4:41pm on 01/06/05 at 17:50:15, headoftheclass05 wrote:
a long time ago. :'( |
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Title: Re: I just want the doc to listen- Post by don on Jan 11th, 2005, 8:06pm Your posts would be a little easier to follow if you'de stop posting in technicolor. |
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Title: Re: I just want the doc to listen- Post by nani on Jan 11th, 2005, 8:21pm Hi sweetie...I'm so sorry you're suffering. I assume since you are the head of the class, that you are in college. If that is so, is there a student health center there? At the university here, one can be referred form Student Health to the University hospital which has some of the best drs in the state. And students are charged very little because they often have little or no income. There may be another program for low income folks where you are, also. It's not always the best care but it's something. You must learn all you can before you go. You will hopefully get a definitive diagnosis and some help. Good luck and pain free wishes to you....nani |
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Title: Re: I just want the doc to listen- Post by Kris_in_SJ on Jan 11th, 2005, 8:22pm Sorry, HOTC05, Don's right. Reading your posts is giving me a HA - but not of the cluster variety. My advice: 1. Keep a headache diary starting right now. Note the time, duration, intensity (BYW, there is no kip11- that would be death), and what does or doesn't help. 2. Read all you can and print out stuff for the brand new doctor you're going to find. 3. Once you find that doc, get a proper diagnosis. There are meds and treatments to help shorten a cluster cycle and make it more bearable, but you need to know ABSOLUTELY what you have. On another note (and I seem to be on a roll, now), Cluster Syndrome is not restricted to overachievers. On this board, you will find factory workers, firemen, police, computer geeks, nurses, bartenders and truck drivers, to name just a few. Some of us are self-employed and prefer to work as little as possible! However, we all have one thing in common - CH's and a desire to help others who have the same thing. Best Wishes for PFDAN Kris |
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