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Title: * Irritating * Post by UnsolvedEquation on Sep 11th, 2003, 11:34pm How many of you have met someone and after they find out you have CH, they reply with "Oh yea, I got that too". And you know damn well these people have no idea what they're talking about. I have this cousin who is a hypocondriac. The witch has everything ! And she called me tonight to say she now has clusters " Like I do"....YEAH RIGHT !! >:( Makes me wanna slap her ! ( but i'm just too damn nice ) What do you think ? Have you heard this kinna stuff before ? How does it make you feel ? Angry ? |
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Title: Re: * Irritating * Post by tsayswhy on Sep 11th, 2003, 11:45pm i no the feeling my mother-in-law just said to me today "yes i no how you are feeling when i get a migraine i have lay down" i love her dearly but i wanted to scream THERE NOT MIGRAINES she told me i should try and lay down with a cold cloth. i walked away and could feel myself starting to shake but because of this site you guys have made me realize THEY DONT KNOW OR UNDERSTAND. |
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Title: Re: * Irritating * Post by surfshi on Sep 12th, 2003, 2:38am even in general convo the sub comes up about ha, I found myself the other day listening to very nice person about her ha. I found myself asking her a few questions about the charecteristics to see maybe the info here could help anyway they sounded like a headache.I asked do you get them when you drink alcohol, Yup she did , always. hmm must not be that bad or else she wouldn't drink alcohol. I dropped it and we continued on our convo. "TO KNOW WHAT IS RIGHT AND NOT DO IT IS LACK OF COURAGE" . |
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Title: Re: * Irritating * Post by Jewel on Sep 12th, 2003, 8:59am People who don't get CHs, have no clue what they're like. I sometimes get irritated with some of my friends who complain of headaches/migraines. I'm extremely unsympathetic (which I know is wrong). To myself I think: You don't even KNOW what a headache is. I can relate with your frustration. |
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Title: Re: * Irritating * Post by jminmilwaukee on Sep 12th, 2003, 9:11am I gave up trying to explain to people what a CH is. For the most part people are self centric and YES they always launch into, "this one time, at band camp....I had a migrain". Only those who are close enough to you, care enough to research or read the data and actually see you go through one understand. Now, what I cannot grasp is how hard it must be to be the supporter of a clusterhead. How helpless would that make you feel? I believe this is also something you could not understand unless you've been there. just my 2c |
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Title: Re: * Irritating * Post by kbbogo1 on Sep 12th, 2003, 9:30am I bet all of us can vent on this subject!! I, too, gave up trying to explain the pain and symptoms. My husband has seen me during an attack and knows that even he cannot even fathom the pain. Luckily, he comes to my defense when people comment that they have "migraines" too. Since I really do have migraines also, I tell hypocondriacs that a severe migraine compared to a cluster headache is like comparing a paper cut on your finger to chopping your finger off. There simply is no comparison. Kim B |
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Title: Re: * Irritating * Post by UnsolvedEquation on Sep 12th, 2003, 9:55am I'm kinna glad that I'm not alone in my 'frustration' with other people. They really have NO CLUE ! Here ...I feel like you all understand exactly what I mean and exactly what i'm going through ! Thanks ppl and I'm glad that this site is here. Thanks DJ :) UnsolvedEquation |
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Title: Re: * Irritating * Post by stuey on Sep 12th, 2003, 10:19am My sister gets migraine with aura and sometimes they last three days. I get migraines at times, see spots, smell bleach, etc. but the pain is not as severe as CH. I was talking to this woman at work about CH and she said it sounded like her migraines and I wanted to jump on her and so I just shut my mouth. It seems many people want to out suffer the next person, thinking their pain has to be the most severe. Saying you have cluster headaches seems to be almost romantic and many want to say nowadays they have them to feel they are part of a special suffering group or something. It doesn't make me feel special but that's my take on it. |
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Title: Re: * Irritating * Post by 9erfan on Sep 12th, 2003, 10:28am One of my girlfriends recently had a baby and I went to visit her in the hospital. While I was there Allie's mother and her mother's boyfriend also came to visit. This woman has known me since I was 17. I 've had several conversations with her over the years about my headaches. She suffers (or she did before menapause) from migraines and I have told her the differences between her headaches & mine on many occasions. While I"m visiting I start to get hit and I say "I better go, I'm starting to get a headache". Allie's mom says to her boyfriend "V gets migraines like I do". What the hell?? Why do I bother?? Of course, I was too concerned with my exploding head at that point to try to correct her. |
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Title: Re: * Irritating * Post by sadsue on Sep 12th, 2003, 11:15am I KEEP SAYING IT - AND I BELIEVE IT'S TRUE... IT'S THE NAME..... CLUSTER HEADACHE.....HEADACHE. EVERYONE GETS HEADACHES, RIGHT? IT NEEDS A MEDICAL NAME THEN THEY MIGHT PAY ATTENTION! SUE PF I WEEK ;D ;D ;D |
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Title: Re: * Irritating * Post by ClusterChuck on Sep 12th, 2003, 12:15pm I deserve a metal! (or a chest to pin it on) I did not kill the tech that was administering the test at the hospital today. His comment was, "I don't see why you are going through all these tests. It is just a headache." It is a good thing he was not taking my BP at the time. It would have gone through the roof! Sign me: "Just a headache" Chuck |
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Title: Re: * Irritating * Post by Big_Dan on Sep 12th, 2003, 12:30pm .... yup. ... my good friend (a Marine... so he's damn stubborn anyway), had his face broken when someone stepped on it during a soccer game when he was younger... ... anyway.. I get the lines about how he knows what my headaches are like... bullshit line after bullshit line, until I tell him to shut his hole or I'll bust it with my foot... .... argumentative not a very nice person.... -Big Dan |
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Title: Re: * Irritating * Post by aprilbee on Sep 12th, 2003, 12:42pm I don't really get it a lot, I make sure an explain that CH is a migraine x's 1000 and let everyone know its also known as a suicide headache, that usually gets the point across, people around me who have migraines, are always glad they have migraines and not CH, HOWEVER, I've had people tell me like when they have a toothache that "this must be what it feels like to have a CH" HA, I would take a toothache in each of my teeth over a CH, geez, I agree with Sadsue, they should come up with a better name for it, I can't even think of a good name to describe the pain...can anyone? |
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Title: Re: * Irritating * Post by Jewel on Sep 12th, 2003, 12:44pm I think a new name should be given to cluster headaches. Any ideas? Headbombs Exploding skull syndrome |
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Title: Re: * Irritating * Post by Jewel on Sep 12th, 2003, 12:50pm Perhaps a new thread should be started on that? Re-naming cluster headaches? :) |
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Title: Re: * Irritating * Post by 9erfan on Sep 12th, 2003, 12:51pm I like exploding skull syndrome! Can you imagine the looks we would get if we told people we suffered from EXPLODING SKULL SYNDROME?? :o |
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Title: Re: * Irritating * Post by Jewel on Sep 12th, 2003, 12:52pm Okay, I'm starting a new thread.... |
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Title: Re: * Irritating * Post by stuey on Sep 12th, 2003, 1:26pm There already is something called Exploding Head Syndrome which was talked about a week or two ago. People with serious headaches (like us) get this, they wake us from sleep within an hour or two of falling asleep or while falling asleep and the body jumps because there is a huge explosion that goes off in the head but it is not painful. |
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Title: Re: * Irritating * Post by Jewel on Sep 12th, 2003, 1:28pm I did not know that. Hm. |
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Title: Re: * Irritating * Post by stuey on Sep 12th, 2003, 1:39pm Yeah. I started it on August 23rd I think. It's on page 13. I found out from my headache specialist cause i described what had been happening for years to me. Others of his patients had the same thing happen and it happens to people with vascular headaches. i thought it happened to everybody so i had never mentioned it to a doctor, but i guess not. sometimes i am awakened similarly by loud sounds like huge flies or mosquitoes buzzing in my head and my body jumps me awake the same way also. They are painless though and probably due to misfire of electrical impulses in my brain. I am epileptic and seize during my sleep. |
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Title: Re: * Irritating * Post by Jewel on Sep 12th, 2003, 1:47pm Oh geez. That's not good. :( |
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Title: Re: * Irritating * Post by stuey on Sep 12th, 2003, 1:50pm The seizures suck and we're working on meds for that. currently trying topamax. been seizing for years. but the exploding head thing that happens at least that's not painful. hope you're doing okay. know you've been really going through it. are you pain free? |
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Title: Re: * Irritating * Post by UnsolvedEquation on Sep 12th, 2003, 2:15pm EXPLODING SOUNDS ! I did write about that in the previous post. For about a week straight I sould be sleeping good and KKAAAABBBOOOMMM ! The loudess explosion I ever heard would wake me up and it was a FULL BLOWN CLUSTER ! A KIP 10 ! thought I wouldn't make it another day without committing suicide. I called my doc in tears and said "Please do something...NOW". So I was admitted again for DHE. After that, they went away and I haven't had one yet. (The exploding part) It really sucked ! |
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Title: Re: * Irritating * Post by stuey on Sep 12th, 2003, 2:25pm Then that's different then what I'm describing and different than Exploding Head Syndrome. Exploding Head Syndrome is painless. I was always awoken by my CH as is everybody else but never with the exploding sound you described, you're the first I hear that is awakened with exploding noise with the CH and pain. The exploding head syndrome is a distinct separate thing than my attacks own and is not painful at all, just startling. People with migraines also get it. My sister gets these, and she experiences them more frequently than me after I described them to her. |
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Title: Re: * Irritating * Post by UnsolvedEquation on Sep 12th, 2003, 2:54pm It may be different....but still terrifying. I couldn't have handled it much longer |
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Title: Re: * Irritating * Post by stuey on Sep 12th, 2003, 2:57pm So you are in remission of the headaches or the exploding noises stopped? |
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Title: Re: * Irritating * Post by Callico_Kid on Sep 13th, 2003, 1:39am I used to let it bother me when people tried to tell me what to do with the HAs or compare them with what they have, but I realized after a while that there are two types: those who have to have something worse than you and those who are honestly trying to relate it to something they can fathom. I personally, being a male cannot fathom childbirth although I was there as a coach for my wife five times w/o pain meds. Neither can anyone who has not had a cluster comprehend them. jc |
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Title: Re: * Irritating * Post by UnsolvedEquation on Sep 13th, 2003, 1:58am I am STILL chronic but the explosions have 'ceased fire' |
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Title: Re: * Irritating * Post by Prense on Sep 13th, 2003, 9:58am I think it is in human nature for people to sympathize in anyway they know how. I have heard the "yeah, I get HAs too" or, "my sister gets nasty meegraines"...the list goes on. There is really no reason for a retort as these people just really have no idea. It is frustrating for the clusterhead, but often times it is MORE frustrating to attempt to make them understand. I just chuckle and move along. Chris |
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Title: Re: * Irritating * Post by Miss_Deleny on Sep 13th, 2003, 10:09am I have a co-worker that I talk to about Christopher's HA's and I think I have her somewhat to the point of where she can understand a little about what he is going through. Christopher once told me that a KIP 5 to him was about what a non-stop brain freeze felt like. So, I told her exactly that and the change in the way she thought about it was obvious. She no longer thinks along the lines of a migraine. But is alot more concerned on what they are trying to do for him to stop this horrible pain. ~APril~ |
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Title: Re: * Irritating * Post by nancyc on Sep 13th, 2003, 5:36pm Yep, know how you feel exactly...was in my neuro's office two months ago and got hit..the nurse would not let me in the back for about fourty five minutes...I was ready to kill the witch..when i got back there, she says...Yeah, i had a ch last week.......I started to strangle her when my neuro walked in LMAO...i told him what she did and he chewed her out bigtime...It breaks my heart to hear she had ONE ch last week...what a miracle LMAO...smiles,nancyc |
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Title: Re: * Irritating * Post by Ree on Sep 13th, 2003, 5:44pm Here is an example of a thread that I don't like so I am not going to give my opinion on it... Take what you need and leave the rest............. no offense taken... peace and love everyone.............. going to bed |
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Title: Re: * Irritating * Post by nancyc on Sep 13th, 2003, 5:54pm Oh, sis, i hope you dont think i was cutting down anyone who has migraines.I was cutting down someone who said they had ONE ch though..that just does not happen....i have had migraines too..and i pity those who suffer from them...to me, chs, migraines and even major tension h/as are pure hell...i have dealt with them all...including TMJ h/as...i would never say one was worse than the other...sleep well , my friend..smiles,nancyc |
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Title: Re: * Irritating * Post by UnsolvedEquation on Sep 13th, 2003, 9:11pm Ree: Gathering from your reply, I guess you're not a sufferer but maybe a supporter? Am I right? Well...I meant no offense to you. As a supporter...someone who has a good friend or family member with CH...you must know alot more than the average joe on the street. It's to those ppl that this thread was meant...not supporters. It's to those who REALLY have no clue...not you. I'm sure that everyone here has family/spouses/friends that DO understand ! Hope you're not mad Unsolved |
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Title: Re: * Irritating * Post by Ree on Sep 13th, 2003, 10:45pm Nooooooooooo problem... love ya Ree |
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Title: Re: * Irritating * Post by UnsolvedEquation on Sep 14th, 2003, 2:27am SHE LOVES ME ! SHE LOVES ME ! YABBA DABBA DOOOOOO !!!! lol |
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Title: Re: * Irritating * Post by ClusterChuck on Sep 14th, 2003, 2:54am Hey, wait a minute ... She had told me loves ME ...??? Chuck |
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Title: Re: * Irritating * Post by Turts on Sep 15th, 2003, 8:16am I used to get irritated, but then i decided that they werent worth the stress and bother. As per Aprilbee- once you tell someone they are commonly known as suicide headaches, it either gets the point across about there intensity--or--- the conversation enters that uncomfortable zone and they chang the topic. I once was taken into the bosses office to be spoken to about my punctuality in the mornings. When I told himabout CH i got the usual - Yeah I got HA too but I still get here in time. UNtil that one fateful day. While in a 6hr meeting- he saw me change from the mild mannered funloving life inbracing champion that I am, into the Hulk with no tolerance for people or light/sound and unable to make a sound other than a grunt. Both eyelids swollen, eyes blood shot and dilated, carrying my head and upper body to one side- constantly wincing the pain. The following day he came into me asking for panadol (over the counter paracetamol)for a headache that he was suffering. When I explained the meds I was on, he finally said "I dont know how you do it" , " three or four of those HA 's a day, I could not get out of bed this morningwith this" This lead into convo about th 1-3am headbanging sessions in the shower. It took a while but this guy is now very supportive. Sometimes the irritation is worthwhile, as they become your biggest supporters. And thats what we need. |
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Title: Re: * Irritating * Post by hopefull on Sep 15th, 2003, 9:28am I just smile and think to myself thank God they don't have it... cause talking about it does no good what so ever....you can't convince them of anything else.... |
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Title: Re: * Irritating * Post by stuey on Sep 15th, 2003, 9:34am I pretty much have to feel the same way because you don't want to wish your malady on someone else. You wish it was understood but you don't want to wish it on someone else. I have sometimes wished though that I could (and I know this is terrible) grab somebody by the arm and somehow link with them sorta like Spock used to do like when he used to do those mind meld things just to give some people a quick 5-10 second sampling of what it was like, then they would know and I wouldn't feel frustrated all the time. |
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Title: Re: * Irritating * Post by 5-string on Sep 15th, 2003, 10:33am When I try an explain what's going on I avoid the term"headache" I will state that the "medical term" for this is cluster headache. But I usually explain what causes the pain and that usually keeps people away from the "headache"idea. And I only go there when asked or when it's nessesary for someone to know.(boss,close friends....) And sometimes I'll tell them it's extremely contageous and that usually ends the coversation right away. ;D You're right, we should come up with a new name. How about " Get the f#ck away from me! :)" ...Mark... |
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