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Title: Anyone have ideas? Post by worfsmom on Feb 14th, 2004, 5:42pm Hi, my mom just got me this computer to force me out of bed more often. I've only visited this site a few times when I've been on her's or my sister's, but it's felt like coming home. I've been in my current cycle since October 1995. Overall I've had CHs for nearly 24 years. This one's the hardest tho! Since I moved back to NY from Florida I've been seeing a pain specialist who's been very helpful and understanding, prescription-wise. Lately tho he's been pressuring me to try drugs that have previously made me very sick, or to try new treatments that my insurance company would never pay for, like Botox injections. Last week he suggested Electric Shock Therapy, and was very upset when I said ABSOLUTELY NO!!! He claims ECT has been very effective in the journals for treating chronic headaches, except he couldn't say if those "headaches" were cluster or not. Have any of you heard of this? And how about intravenous magnesium or lidocaine? He suggested that back in March of last year, and claims that he's still waiting for my insurance company to approve it. I'd appreciate any info anyone can give me. Right now it's back to bed with some pills after walking the dog. This winter has been horrible - I got the flu vaccine for the first time in my life, and i keep relapsing with the flu. I'm sure you all know (as my dear therapist doesn't!) that any extra discomfort also makes the CHs that much worse. And all this time in bed means my metabolism has slowed to nothing, so even tho I don't eat much I'm overweight for the first time in my life. I tried a low carb diet, but between not being able to shop and cook as needed, I wind up eating fast things that are mostly carbs. And I find if I cut out too many carbs the pain gets worse and I tend to have seizures. But this is so depressing! I've been trying to the gym or use my Winsor Pilates tapes, but the damn CHs always interfere. And my fiance (who I've been separated from for almost 2 years) is coming back soon. I don't want him to see me like this. I know he loves me and he understands about the headaches (even tho they nearly destroyed us), but I'm so sick of being an invalid. I used to be beautiful. I used to be vibrant. I used to have an important job that I did well. But now I'm a 43 year old woman who lives in bed, survives on disability and what money my 68 year old mother can spare, and I'm ashamed to even look at my own body in the shower, much less show it to the man I love. How do you get your libido back when you're in pain all the time and you're on all these drugs? I never thought I'd be asking this, but this is my life now. I've got to go. I didn't think writing this would upset me so much, but I've got tears pouring down my face and my head is going ballistic. Thanks for any answers. |
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Title: Re: Anyone have ideas? Post by floridian on Feb 14th, 2004, 6:45pm Quote:
My first response was "your kidding, right?" But then I thought about some of the nitwits I have encountered when seeking medical care, and I feel for you. Find a doctor that knows what he or she is talking about. Magnesium has been shown to help some people with clusters. The IV is quicker acting but has to be done at a hospital or clinic. You can start taking magnesium supplements and see if it helps - 400 to 600 milligrams per day, divided in doses over the day, in a chelated form if you can get it (oxide might cause some diarrhea, sulfate would if taken orally). The $4 magnesium treatment that takes a few weeks to help is better than the 'quick' magnesium therapy that the insurance company won't approve for several months. Also search the board for melatonin info - some of us have been helped by that. Do you use oxygen? Triptans? Lithium, topomax, or anything else? Oxygen is effective for most people for turning off the pain - temporarily. Other drugs can help prevent. The other drugs can have side effects but can be useful. Nothing works for everybody. Just have to try things with a good doc and see what works. Clusters will drag any one down. I hope you can find some answers and support here. |
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Title: Re: Anyone have ideas? Post by pubgirl on Feb 14th, 2004, 7:04pm Hi there Good for your Mum giving you the chance to come to the site to talk to us! I'm so sorry you are suffering so badly. I'm not sure you can call pain since 1995 a cycle, I'd call that hell! I would like to echo Floridian, I have NEVER heard of ECT being used for CH, and would certainly use every other route possible before letting someone shock my poor brain, which is addled enough as it is! As Floridian says, tell us a bit more about what you have already tried as this cycle sure as hell needs breaking. Wendy |
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Title: Re: Anyone have ideas? Post by bobkip on Feb 14th, 2004, 7:21pm ELECTRIC SHOCK THERAPY??? My god, are we back in the dark ages. It's time for a new doc. Kip |
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Title: Re: Anyone have ideas? Post by denisebyrd on Feb 14th, 2004, 11:46pm HI, aaaai'm very interested in the botox therapy. My husband said he had seen something newsworthy on it and it was worth looking into. Also, I would like to know if anyone out there has tried to quit smoking and what resutls they had. I quit for three plus months and probably would have done very well, however this precipitated a cycle of headaches that nearly did me in. I caved~!!!! The worst part is I felt betterNow I am back in a cycle again that will never end. Prednisone, Oxygen, and Imitrex. I would love to have some input from others who have tried. Thanks Dbyrd |
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Title: Re: Anyone have ideas? Post by jonny on Feb 15th, 2004, 12:56am on 02/14/04 at 18:45:22, floridian wrote:
First thing is to stop going to bed with pills.....then get the fuck out of bed and fucking live.....Christ!! Take control of your fucking life....I sit here 29 years chronic and im not sucking off the system or my mother. Someone needs to put a boot in your ass!!!!....pronto!! Dont fucking whine.....do something about it...Damn it! You dont need a Doc that knows, you need to stop with the selfpity....Wake up! YOU are the only one that will change anything....when you realise that shit will get better.....Quick Even the 14 years chronic with no meds I never put my head in the sand.....Its time to live....get out of bed for christ sakes!!! .................................Not pretty jonny |
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Title: Re: Anyone have ideas? Post by toader on Feb 15th, 2004, 1:15am Good thing ya got yerself a computer. Now here's what ya should do... 1) Read up on Cluster Headaches on this site 2) Read up on Garfield on this site: http://www.garfield.com/comics/classics/ga970708.html We've all been drug through the ditch in our own way. Don't beat yourself up for it. Tears are natural, but so is laughter. She who laughs, lasts. |
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Title: Re: Anyone have ideas? Post by t_h_b on Feb 15th, 2004, 8:24am Sounds like you're getting some good advice all the way around. A couple of things I'd like to add: YOU NEED A NEUROLOGIST SPECIALIZING IN HEADACHES NOT A PAIN SPECIALIST!!!!! The pain is a symptom of your underlying problem. Treating the pain doesn't work well with CH, you have to stop what's causing the pain. Where are you living in New York? There are plenty of good neurologists in NYC specializing in headaches. The OUCH site has a list. ECT isn't even used much for severe depression anymore. In school I saw it administered to a fairly young woman by a lazy sadistic SOB MD whose patients never got any better. He said it was "just like having an orgasm". (Yes, he said that.) To me, it just looked like the particularly nasty seizure that it is. The idea is that it wipes out your memory so that you can't remember why you're depressed. If you're still depressed afterwards, you obviously need more ECT. Since the type of depression that is usually treated with ECT is biochemical and not a reaction to something experienced, the ECT doesn't work too well! It would also seem that losing lots of your memory could actually cause depression. If your doctor is recommending that for clusters, he's the one that needs the ECT. Or a good malpractice suit. Or both. And I must say I have no idea how having clusters keeps you in the bed unless it's between attacks because you're depressed. A neurologist can also help treat your depression with medications. Treating the depression would likely help your libido, too. Once you start feeling better then maybe you can get some pschotherapy. Psychotherapy alone won't help if you have a biochemical imbalance in your brain. Your first two steps to getting a life are 1) dump the pain specialist nut and 2) get a decent neurologist. In that order. Your general practicioner could do a better job with your clusters while you're inbetween. Any medical student probably could. Good luck. |
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Title: Re: Anyone have ideas? Post by ave on Feb 15th, 2004, 11:00am I quite agree - suggesting Botox that helped only very few sufferers, magnesium IV (copy what floridian says) and the bleeding ECT!!! Try and find yourself a better and cluster-inmformed doc right here http://www.clusterheadaches.org/doctors.htm Check out the whole of that site, very good info there. Oh and I agree with Jonny. Get out of bed. There are more chronics here - not people in episodes, people with several cluster attacks just every day of the godgiven week, year in, year out. And they function and do their jobs and have even time for a social life. Get back to living. Clusters don't kill one, after all. They just hurt. Have a good read and good luck. |
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Title: Re: Anyone have ideas? Post by Cerberus on Feb 16th, 2004, 11:55am ECT???? --------NO! FORGET IT ALTOGETHER! OXYGEN!!!!try that first. Quote:
Quote:
Jonny's words although HARSH and now edited LOL! (he doesn't hold back for anyone) are very valid and good advice. Get Proactive not re-active, Ramon |
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Title: Re: Anyone have ideas? Post by Edski_1 on Feb 16th, 2004, 12:33pm My sister is about your age, and just settled a 6 year workers comp case...claims chronic pain, etc etc... At points in her 6 year oddyssey she make strides and got out, joined the gym and went swimming, did what she could on a stationary bike (she suffered a knee and back injury)...when she did those things her mental and physical outlook were IMPROVED IMMEASUREABLELY. The moment she stopped, she started slipping back into her hell. It's tough to watch, especially since she has a 19 year old son who is basically being dragged into hell with her. I can't doubt the headach pain, and pain can lead to depression...but electro-shock-therapy has never seemed to be legit science to me. Floridian is one of the most well read people on this board, take his advice strongly. You need to talk to a neuro that understands headaches, not a pain specialist... If indeed you are suffering from cluster headaches there are many different treatment options...and there are a lot of ears here to listen to your concerns. Some may be a littel more gruff than others :) but the most important thing to realize is that you can't let the beast win! It's too easy for the bastard to take you down, so you have to try REAL HARD to understand that this is not a fatal condition. I went nearly 2 years with this disease thinking it was "sinus headaches"...and ineffectively popping sudafeds and ibuprofens, not knowing that such things as imitrex, oxygen, and zomig existed. Now I know that there are meds that can dull the pain, and after 6 weeks on topamax I haven't needed an abortive. I still get some shadows...and wonder how long I'll need to be on this dope. I've lost my job, and this med is expensive, so it's not all easy... But I'm not going to cry and give the beast a chance to win. FUCK THE BEAST! I PISS IN YOUR GENERAL DIRECTION! We clusterheads are the toughest people on the planet, and you'll have to drag me kicking and screaming before I give up... Let us know what you've tried. There's LOTS of experience with different meds here. I'm willing to bet we (as a group) can sugest a few things that you "pain specialist" might not be aware of...'cos I'm betting that he/she know's squat about the true nature of Cluster Headaches. PF Vibes, and BE WELL!!!! :) |
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Title: Re: Anyone have ideas? Post by worfsmom on Feb 16th, 2004, 4:34pm I keep trying to answer all of your kind (but one) responses, but I keep getting thrown out of the system. Anyway, what I didn't say before was that I'm an RN, and there's not much I don't know about this disease. As far as doctors go, I've been to most of the NYC ones, but now I'm limited to the ones who participate with my HMO, and the other ones besides my current one are ex-doctors of mine (they dumped me when they couldn't "cure" me years ago). This one really is a good guy. He cares at least, and unlike most of the others (and this I know from actual experience), he's willing to write pain meds. Since I'm unable to take most other meds for various reasons (e.g. other medical conditions, severe adverse reactions, financial considerations) that's important to me. I'm no junkie and I don't like taking this crap, but without it I couldn't function even the little bit I do now. I don't spend so much time in bed because I'm depressed. Actually, I'm not clinically depressed. I recently consulted a psycopharmacologist and he confirmed this, telling me I would be "crazy" if I weren't somewhat depressed over my condition, and that given my past history, I'm gonna have to wait out this cycle like all the rest. My CHs are atypical: in addition to the acute attacks you all get, I have a constant level of pain that varies in intensity. This is extremely exhausting. Over the years I've learned, like most of you, how to manage the pain. I've become expert at relaxation techniques, biofeedback, etc. But mostly it's a matter of recognizing what I'm capable of at any given moment and not overdoing it, or I'll really end up in pain or start having seizures. Knowing this, knowing I 'm supposed to look at what I do, little as it is, as accomplishments instead of focusing on all the things I haven't done, is important, but when you're brutally honest with yourself it doesn't really help. And just to answer the guy who blasted me without an iota of compassion, the money my mother gives me pays for my therapist, and considering that she stood by and did nothing to stop my father from beating the shit out of me for the first 17 years of my life, including the blows to the head that probably triggered the gene for CHs he passed onto me, I think she owes me for that. Why don't you try living your life with those memories, having the PTSD destroy every relationship, and thinking you deserved to be treated that way because that's what your mother told you before you dare to judge!!! You sound like a hateful little man, and if you think your negativity is inspiring, think again. To the rest of you, I am very grateful for your responses. I need to learn how to really use this thing, but when I do I'd like to be able to get to know you better, maybe in the chat room (which I've never done before). I'd also like to figure out how to change my logon name and use my real name, which is Leigh. Bye for now, and Blessed Be! |
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Title: Re: Anyone have ideas? Post by jonny on Feb 16th, 2004, 4:52pm on 02/16/04 at 16:34:03, worfsmom wrote:
Nuff said BTW: Head trauma does not turn CH on and off (If it did "Headbanging" would really do something) ............................jonny |
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Title: Re: Anyone have ideas? Post by Prense on Feb 16th, 2004, 5:02pm on 02/15/04 at 00:56:19, jonny wrote:
Leigh, Jonny's post is anything but negative. After reading your post again, I would have thought the same thing as Jonny, but I wouldn't have had the guts to say it. Really, your original post sounded as if you are drowning in pity and wanted us to dump a few more gallons on you. BTW, being a RN doesn't necessarily qualify you as a subject matter expert on CH...hell, neither does being a doctor. That said, every single one of us is here to help! ...including the "hateful" little man. ;;D You gotta want to help yourself as well. Best wishes for you! Chris |
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Title: Re: Anyone have ideas? Post by thomas on Feb 16th, 2004, 5:09pm I would suggest a melatonin and prozac regimin....... I'm no doc, but that's what I would try. That hateful little man posted every word with love and support in mind. |
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Title: Re: Anyone have ideas? Post by t_h_b on Feb 16th, 2004, 7:40pm on 02/16/04 at 17:09:27, thomas wrote:
Leigh, Jonny must have the right tactic because he is the only person you paid any attention to! Part of being an adult is not blaming your parents for all the nasty sh*t they did to you, intentionally or not, when you were young. That stuff happened over 25 years ago. I'm sure there are several people here who were abused even worse than you were and have gotten over it--maybe they can give you some tips. At some point you have to take responsibility for your own life and your own feelings and thoughts, PTSD or not. I never heard of someone as young as you are "taking to the bed". Usually only rich old widows do that. It usually means you've given up on life. You need to get out of bed while you're still physically able to do so no matter how crappy you feel, how much it hurts, or how tired it makes you. You'll end up like that fat guy who went to have bypass surgery and they had to cut a hole in the wall to get him out of his room. The injectable flu vaccine contains killed virus only. They're DEAD and can't replicate and you can't get the flu from them, much less relapses. I would hope someone didn't give you the intranasal attenuated virus vaccine as it is for healthy people only. Your doctor sucks and you need to get a decent neurologist. That's total BS that he's been waiting almost a year for your insurance company to approve IV mag or lidocaine. If it's not approved within a few days and there is no further action on the part of the MD or patient to get it approved, it gets stuck in a folder, trashed, or if you're lucky, you get a denial letter. He's lying to you. You seem quite happy with him because he writes for pain meds even though they don't seem to be helping you a bit. Never heard of a doctor "dumping" someone because they couldn't cure them. Most of them will go right on treating you as long as somebody pays the bill; either that or refer you to a more specialized specialist. Some of them will even treat you if nobody pays the bill. Usually when a doctor dumps a patient it's because they are totally absolutely uncooperative with their treatment and there is no point in further treatment. Is Alexander Mauskop one of the doctors you've been through yet? Perhaps he is on your HMO's panel. If not, maybe you can come up with the $300 for an initial consult somehow. He's knowledgeable about clusters and takes into account other problems that you have when proposing treatment. Also, Leigh, there are so many jobs for nurses in New York right now, full-time, part-time, in the hospital, in your home, in the field, that you could probably find SOME kind of work. Lately I have had recruiters calling me even after I hang up on them. Why don't you at least get out and take a class to keep your BLS current? [smiley=nopity.gif] |
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Title: Re: Anyone have ideas? Post by cathy on Feb 17th, 2004, 4:48pm Quote:
:o....how dare you judge someone who has took the time to respond to you, whether it be in a good or bad way...in my honest opinion like's been said, Jonny may post stuff you don't like, but have you considered that maybe you don't like it because the truth hurts.. [smiley=huh.gif] Anyway if I were to say you're a self pitying bitch you wouldn't like it so I won't, I'll just say get a life RN or no RN you're maybe not as educated in this condition as you think you are.... PF vibes to you... Cathy... |
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Title: Re: Anyone have ideas? Post by BlueMeanie on Feb 17th, 2004, 6:29pm You say you've been in cycle for 9 years ? I find that hard to believe that you cannot get relief. You say your an RN and there is not much you don't know about clusters ? It sounds like you don't no much at all about clusters if that's what you have. As others have said, if you are chronic and are an expert on clusters, you should know there are many things to take to stop the Beast. Or at least something to control the Beast to give you a life back. Not many clusterheads lay around in bed & do nothing. Most of us work, shop, dine, etc. during attacks and still manage to keep things in relative order. It's not easy, but it is possible. There are lots of abortives and preventives that it sounds like you may not have tried. Hope you can get your life back soon. |
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Title: Re: Anyone have ideas? Post by worfsmom on Feb 19th, 2004, 4:10pm I'm sure you all mean well, and maybe you've been so insular for so long you stick up for each other right or wrong. However, let me tell you Jonny's approach is wrong. I don't need to be spoken to like that by anyone, fellow cluster-sufferer or not, nor do I need the hypocrisy of someone else calling me judgmental and a bitch because I voiced my opinion. I'm sorry, is that something only your tight little clique is allowed to do? You don't know me, and you don't have the right to call me names. I don't know or care what your cutesy little abbreviations stand for, but the person who did that knows what s/he can do with them. I came here looking for support. I'm not drowning in self pity, but like anyone in pain that most people don't really understand, I do feel sorry for myself sometimes and I have a right to. If I gave the impression that I spend my life in bed, and I must have, it was an exaggeration, born of pain and discouragement. When I first found this website, my first thought was: These are my people! They understand! But after reading your replies to me, as well as some of your other posts, I was wrong. Since you claim to respect brutal honesty, here goes: I have read information on this site, to me and to others, that is dead wrong. Examples? For one, head injuries are most certainly known to trigger the onset of cluster headaches. It's in the literature, and I also know from experience, since this 8-1/2 year long cycle was caused by a blow to the head. For another, someone told a Britishwoman who was newly diagnosed that it probably wasn't clusters if she didn't want to die, or words to that effect. People do have different levels of pain tolerance, and sometimes clusters start off relatively mild and worsen with time. Alex Mauskop was my doctor when he first began his private practice. I was his first cluster patient, and he was so overwhelmed by my history at that point that he told me to tell him what to do and he'd write the prescriptions. Since then he's written a few articles and done a few studies, making a name for himself. I went back to him in the early 90s, and he tried me on Prozac when it was new. After a few doses I was seeing Martians, freaking out. I liked him enough to send my sister to him a few years after that, but he nearly killed her by ignoring our similar reactions to drugs and prescribing one that made her extremely ill, then disappearing when we tried to reach him. So no, I don't have too much respect for Alex. Being a nurse doesn't make me an expert. What does is the fact that I make it my business to research thoroughly, and my medical background helps in that regard, as does my IQ. Nor do I subscribe to the belief that there's a magic cure out there, you just have to keep trying everything till you find it. That doesn't mean I'm drowning in self-pity, just that I'm realistic. This cycle will end when it does, just like all the others did. All I have to do is wait it out. I thought the people on this site would help me do that by giving me moral support, but I guess I was wrong. As far as the very private and painful feelings I shared about my childhood, and which, not surprisingly, were rubbed in my face, whoever said that is so very wrong as well. Would you tell a rape victim to forget about that violation because it happened 25 years ago? If trauma hasn't been dealt with, you feel it when you feel it, fresh and new as the day it happened. In fact, that's part of the therapy, to relive it in order to desensitize yourself. If you haven't had the misfortune to suffer through something like that personally, don't have the hubris to preach to someone who has, and who is trying to deal with it. That, of all the inappropriate things that were said pissed me off the most. Being supportive doesn't mean being the authority on the subject and instructing what, how, when and why to do. It simply means listening and perhaps suggesting, not the crap I got from the majority of you (or maybe it just felt like a majority - being ganged up on gives that impression). To those who don't fit this profile, I apologize. But I don't think I'll be visiting this site again. |
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Title: Re: Anyone have ideas? Post by Tiannia on Feb 19th, 2004, 4:38pm Jonny, you would be a great councelor / supporter in a 12 step program. I worked with them for years and your approach is exactly what they teach and preach. "Get off the fucking pitty pot and do somethign about your situation." The problem is that most people are taken back by that and will not fight back. And it s that fight that makes them change. Makes them take responsiblility for thier actions and change their behaviors. Many of you are very right and like I have said many times, pain meds do no, can not, and will not help CH. All they do is not make you care for fucking much that you hurt, but you still hurt. If a person wants to live int hat type of stuppor then that is what they choose to do. We are all responsible for our choices. I have hocen to come here and fightr back when people have attacked me because in looking at what I wrote I needed to get kicked in the ass to stop. If this lady truely cam ehere for support then she needs to realize that support comes in all shapes and sizes. And that sometime attacking the way that you think is the best way to help you. I truely hope that she does come back and reads this. As I believe that we can assist her in getting her treatment going in a possitive way rather then the slow spiral down that she is headed and maybe get her life back on a positive path as well. Tiannia |
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Title: Re: Anyone have ideas? Post by jonny on Feb 19th, 2004, 5:28pm Yawn! |
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Title: Re: Anyone have ideas? Post by t_h_b on Feb 19th, 2004, 6:10pm on 02/19/04 at 16:10:28, worfsmom wrote:
Yes, I would tell ANY kind of victim to stop blaming the perpetrator 25 years later, to deal with it, get over it; to stop blaming the spouse of the abuser (their mother) for not stopping it and to stop feeling like she owes them MONEY of all things; and finally, to take responsibility for their own future instead of living in the distant past. And yes, I do know first hand what I'm talking about. |
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Title: Re: Anyone have ideas? Post by Tiannia on Feb 19th, 2004, 7:20pm on 02/16/04 at 16:34:03, worfsmom wrote:
First off - There is no research that has been done to show that there is any gene that is passed down. Also there are no research that shows that head trama of any kind triggers CH. That being said. There is no one who owes you anything. While the issues that you deal with on a daily basis are tragic and the situation that you faced for the first 17 years of your life where tragic. To sit at this time reliving it to desesitize yourself is total BS. You really need to find a shrink that does not deal with psychotherapy and look for a doc that is more Gastalt-esk. Psycho thereapy deals with the belief that only with years and years of discussing over and over the situations that you will gradually get better. Rather what happens is you get stuck in the same patterns (thus destroying your own relationships) because you do not learn to think and act a different way. Other types of therapy allows you to learn that what happened has made you into the person that you are today. That if you want to be a different person that you are the one that has to make the choices to change YOUR behavior and stop blaming everyone else around you. You are the one who choses to react to the situation that happened back then in a certain way and until you chose to react a different way you will always be dealing with it. Now if you want to get into a pissing match of "You dont know or undersand what I had to go through" we can, because my dear lady I would probably blow your socks off with my life story. But I will be damn if I am going to let that history destroy me. Same way I'll be damned if the beast of a CH is going to beat me either. One last thing, my dear. You are the one who asked for ideas. You asked us for comments, you opened your self up for responses. If all you wanted was to vent then as you can see in other people posts that is what they ask for. If you had truly read this site prior to posting anything here, then you would see how people talk here and would not have been surprised by the reaction that you got. Ok I will get off my damn soap box and take off my counselor hat. PF (that is a cutsy way of saying Pain Free which is in the intro that you should have read when you first logged into this site) wishes to you, Tiannia |
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Title: Re: Anyone have ideas? Post by Prense on Feb 19th, 2004, 8:42pm on 02/19/04 at 16:10:28, worfsmom wrote:
...CH fucking hurts and needs no exageration. Hell, the words do not even exist to describe this pain! You are acting like a wealthy person going into a homeless shelter asking for a fucking dollar! Tiannia, your typing sucks, but I love your attitude! ;;D Chris |
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Title: Re: Anyone have ideas? Post by BobG on Feb 19th, 2004, 8:57pm on 02/19/04 at 20:42:35, Prense wrote:
LMAO............you're right Chris. That attitude is a Nevada (Southern part) thing. We all suffer from it. Actually her Reply #19 could use a spell check but she was much improved with Reply #22. ;) |
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Title: Re: Anyone have ideas? Post by broomhilda on Feb 19th, 2004, 9:05pm I have to say I agree with everyone here who responded. :D We each have a story to tell, life is about challenges, bumps and glitches along the way but its what makes us who we are as people. The word Survivor here is key, you can either choose to be a survivor or continue to live as a victim and be victimized by your lifes challenges. No one has to pay you back but yourself for not taking responsibilty for your experiences and continuing to live the cycle of victimization. It will only continue to devastate your life and keep you remaining a victim of your own volition.... sorry my two cents Andrea |
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Title: Re: Anyone have ideas? Post by Woobie on Feb 19th, 2004, 9:28pm [smiley=referee.gif] [smiley=argue.gif] [smiley=referee.gif] You SHOULD separate your CH and other medical problems from your mental trauma... they are NOT the same. Deal with them separately. Treat them separately. I think you've gotten some wrong information about CH in the past - and I also think that you REALLY believe this information. Maybe ALL the people HERE are wrong.. hmmmmmmmmmm As a wise person told me once - you cant help someone who doesn't want to be helped. and that's all i have to say about that...... Tina |
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Title: Re: Anyone have ideas? Post by JDH on Feb 19th, 2004, 10:35pm Bottom line Leigh is that you've only got x amount of days in this life so you'd better make the most of them while you can. And besides, pity parties are boring. my [smiley=twocents.gif] Jim |
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Title: Re: Anyone have ideas? Post by Kirk on Feb 19th, 2004, 11:14pm Get up and get out and about and do something. Anything. Go to a professional and have your egg candled. Get some real treatment for your CH. Ever thought of going fishing? I know some great places. Salmon longer then you are tall. Halibut that out wiegh you and your mom both and crabs with longer legs. Beats what yer doin kiddoo. Trust me. Besides a couple days at sea will cure that little libido problem. TTFN http://gererstorfer.net/content/tux/TN_penguin-bigpsycho-trans.JPG |
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Title: Re: Anyone have ideas? Post by Lizzie2 on Feb 20th, 2004, 12:23am Hey there, just remember the words of Eleanor Roosevelt. "No one can make you feel inferior without your consent." If you dislike what someone says...agree to disagree and leave it at that. Fighting isn't going to solve anything. I do believe that calmly discussing things can solve many an issue, and if that doesn't work...then you just need to walk away. On having clusters and a constant chronic headache, I can relate. I have not had the clusters for long, but I've had chronic daily migraine for over 3 years, and migraines since I was 8. I would have to say that the chronic daily headache has been extremely debilitating for me and also, at times, rather depressing. I've tried over 18 preventives and 15 abortives, and not one has worked. I've had 7 hospitalizations for headache...most of which lasting 2 weeks. However...that being said, I really do think that what is most important is to keep on keepin' on. I'm 23 and a college student, and I feel that if this headache is going to be with me for the long haul, then I want to live. I'm not saying you have to go all out and be an overdriven college student or anything like that, but maybe just find one thing you like to do. A hobby or something. Something to fill your days and bring you some enjoyment. And always get out of bed. Even on the worst days, try to get out of bed. And try to make it. If the only thing you do that day is make your bed, it is still an accomplishment. It will make you feel better about yourself. Some days you may feel like you can get a lot done, and other days you may feel like you can get nothing done. You have to learn to adjust your lifestyle so that it is workable with your level of pain...but you can't just lay down. I was just told by a new doc that the medication I'm about to start will make me not want to get out of bed in the morning. He said, however, that I must get up. He said I could sleep for 6 more hours, but it won't make me feel any better. And this is really true! I will feel better getting up, no matter how hard it is. You DO need to find a specialist who will work with you. Taking pain meds is not the answer for CH or a chronic daily headache type. They can cause a horrible and vicious rebound which will just add to your problems. I just find it a little bit hard to believe that out of the 100s of preventives out there, there is not one you could take successfully. I have had a lot of bad reactions to meds, including anaphalactic shock from one med I was put on, but I keep trying out different ones and seeing how far we can get. There are specialists who treat primarily clusters. Dr. Mueller in Moorestown, NJ specializes in clusters and that's only a couple hours maybe from NYC. Well worth the drive to find some relief in my opinion! I think you need to find some way to come to peace with all you are going through. To some extent, we must accept what has happened and also our headaches and other illnesses. Then with this acceptance there is much less anger and you can have the ability to move on with your life and take positive steps to get better. But try not to harp so heavily on the past, even though it is hard. You just need to know that it happened, and it IS horrible, but you have to move on with your life and handle things in the best way you can. Just some thoughts from the peanut gallery. Lizzie |
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Title: Re: Anyone have ideas? Post by jmorgan52 on Feb 20th, 2004, 2:50am Firstly Leigh: PAIN MEDICATION IS TOTALLY USELESS FOR CLUSTER HEADACHES. (if that's what you have). I would suggest that you discuss getting your Dr (or yourself) to try injecting you with Imitrex during an attack, as this stops CH pain in its tracks for many here. Secondly: What Jonny originally said, but in a much nicer way. ;;D Do try and get a nice life for yourself! Thirdly: Most of us are also sick of suffering with this bastard afflicition, also known as "suicide headaches"! Don't let it beat you down. Fourthly: Stick around. Many here got badly flamed and abused when they first started posting. Suck it in and listen to the advice. Jonny is a sick twisted bastard (and proud of it) [smiley=laugh.gif] , but you too will learn to love him soon if you stick around! John |
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Title: Re: Anyone have ideas? Post by ave on Feb 20th, 2004, 6:41am You are probably wrong, John. This mother's son is so much in love with his trauma and his bed that he certainly won't have any attention (let alone love) to spare for anybody else. One word to you worfsmom: you are blaming your mother for something that happened when you were a child. You are boaming for mistakes she made when she was as young as, or younger than you. Shouldn't you come out of fairyland and face the fact that nobody is perfect, not even moms? At the moment you are effectively blackmailing your mother for mistakes made years and years ago. Also you harshly judge people who may have suffered even worse than you and still can find it in them to help others. I hardly if ever publicly dump on somebody here, but I am going to do so now. You are an egocentric selfserving person metaphorically speaking conceived out of wedlock. It is possible that you have clusters as well. Clusterheads are not saints; they can be anal openings too. |
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Title: Re: Anyone have ideas? Post by AlienSpaceBabe on Feb 20th, 2004, 9:46am Worfsmom, I'm sorry you're hurting, both physically and mentally.... but.... we ALL have our own baggage... we ALL have things that are getting us down.... and sometimes we don't want to get out of bed, but we do it anyway.... my (recent) example: Dec 3 - son in car accident, ended up in hospital overnight, car completely gone. Jan 5 - father starts radiation therapy for internal cancer Jan 20 - house burns down, lost cat (Lisa), very lucky to be alive Jan 21 - son in another car accident, he's fine, car's gone Jan 23 - get sick (still sick Feb 20) Feb 5 - move into rented townhouse, electrical fire in furnace that night, filling the place with smoke Feb 18 - father has more skin cancer removed from his head Do I want to stay in bed? hell yeah! Do I want to stay home from work? hell yeah! So what do I do? Get up every morning. Go to work. Take a walk, short or long, fast or slow. Make dinner and sit at the table to eat it. Read a book. Come here and support at least one other person. Take a hot shower. Fall into bed thankful for yet another day I was alive. If you're still reading: The best advice I can give is to eat as healthy as you can, take a walk, and visualize a huge stop sign popping up in your head whenever you start a pity-party (we ALL have them....). Medically, try to find a new doctor (a neurologist) who can treat many/all of your afflictions - you mentioned seizures: antiseizure meds are effective for many people in preventing CH attacks. |
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Title: Re: Anyone have ideas? Post by Little Deb on Feb 20th, 2004, 10:42am WOW! Love this thread! And love all of you clusterheads that responded! All are great responses....full of love, support and compassion. Leigh...you don't even begin to know the compassion and caring that went into jonny's post. That is the most he has typed in weeks! And with passion that only jonny can muster!! He is one of our best supporters and fellow clusterheads. He would give you his undies if you needed them! I too am an RN. I have done some research, and diagnosed myself many years ago. Had CH for 25 years now. Thank God episodic. But I know very little in comparison to all of the wonderful people here. I will not give you much advice, except this..... don't go away thinking you were wrong for coming here, stick around and get to know everyone, keep reading, but don't post if you don't want to, take as much of the advice here as you can handle, it is all good advice, throw away the pain meds, and FIGHT! We have all been there, and we know that you can do it! Be thankful for what you can, and forget the rest.....take each day one at a time. Now get your butt outta bed and get on some site and buy a plane ticket to Nashville for the convention in July. If you can't do anything else.....go to Nashville. It will no doubt change your life forever. You can find info about the convention on the OUCH site...www.clusterheadaches.org We are all here for support. And EVERY response is full of it! Hope you find peace soon, and start to live again. Big Hugs....Little Deb |
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Title: Re: Anyone have ideas? Post by Tiannia on Feb 20th, 2004, 12:23pm on 02/19/04 at 20:42:35, Prense wrote:
Yes I am a spell check addict. I type as fast as I think but my fingers dont go that fast. ::) I went back and fixed at least some of the typ-o's ;;D |
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Title: Re: Anyone have ideas? Post by jonny on Feb 22nd, 2004, 12:58pm http://im1.shutterfly.com/procserv/47b4dc03b3127cceb95770e3fd130000001610 |
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Title: Re: Anyone have ideas? Post by KarynG on Feb 23rd, 2004, 10:03am Continually re-living the past will not desensitize your pain, but continually LIVING TODAY will. Hoping things are better for you soon. Karyn |
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Title: Re: Anyone have ideas? Post by Belle on Feb 25th, 2004, 3:47pm LMFAO!!!!!!!!!!!!!-----JONNY Belle ::) P.S. Anyone think that worfsmom is still around? |
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Title: Re: Anyone have ideas? Post by chris on Feb 26th, 2004, 12:16am prozac anyone! I wonder if this lady knows Jill from a few months back! |
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Title: Re: Anyone have ideas? Post by wobbie64 on Feb 26th, 2004, 7:22am Hey everyone, Been here awhile, first time publicly responding...Usually do it verbally to my computer screen... Worfsmom, if you came here, you must have had a reason more then getting the proverbial pity party for yourself... We all have skeletons in the closet, either by the actions of others or ourselves. There also is a few of us who have other medical speedbumps that we deal with along with the BEAST.. Mine is Muscular Dystrophy.. Other then that, I'm healthy as a horse. .lol You are the only one who controls how you handle yourself..Bottomline..I average 40+ attacks a month,(no, thats not a typo) been a chronic CH sufferer since 9/89... combined with the fun activities of trying to walk on my own, getting dressed without the help of my 7 yr old daughter (Single Dad), and the simple little things like eating, taking showers, and all of the other everyday tasks that most people take for granted. But there is one thing that anyone who ever has met me, will tell you, I dont complain..IT DOES NO GOOD....You have to do your own laundry when it comes to finding a doctor that will actually understand the beast. If thats truely what you have...Pain meds dont do anything to help it..Maybe you should go to a headache center where you live...If thats Cleveland, there is one at the Cleveland Clinic, also one at University Hospital...Dr Robt Kunkel at the Clinic, is very good, but as of yesterday, The new Doc in town is Dr Guyuron . He is doing research on an actual CURE, for migrianes...Go to www.newsnet5.com for the story...We might actually all have a chance at the minimum, 50% decreased, versus what we have been dealing with..As far as your attitude of thinking all of us here are insensitive, PLEASE, i have read nothing but replies from people that understand and are willing to give advice that can help you..No response equates to not caring...Dont You Think??????? Hope you find what your looking for.... Robb[b][/b] |
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Title: Re: Anyone have ideas? Post by Woobie on Feb 26th, 2004, 8:05am Welcome Wobbie64.... Wobbie64 - NOT to be confusdicated with the WOOBIE.... woobies wobble but they dont fall down... Woobie female - wobbie MALE... woobie not new = wobbie new..... woobie supporter - wobbie sufferer........ woobie = 2 o's -- wobbie - 2 b's.. hoping to clear up ANY confusion...... ;;D WOOBIE tina :-* oh yeah... and i think we lost worfsmom.........(BIG suprise.......) |
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Title: Re: Anyone have ideas? Post by ave on Feb 26th, 2004, 9:21am Add to that Wobby does not seem to have lost his weeny...? |
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Title: Re: Anyone have ideas? Post by Woobie on Feb 26th, 2004, 12:48pm on 02/26/04 at 09:21:06, ave wrote:
LMAO!!!! You are absolutely right...... [smiley=laugh.gif] I miss my weeny TERRIBLY! :'( tina :-* |
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Title: Re: Anyone have ideas? Post by t_h_b on Feb 26th, 2004, 7:19pm on 02/25/04 at 15:47:34, Belle wrote:
Nah, she's long gone--or lurking-- but this thread doesn't seem to want to die! |
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