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Title: PLEASE HELP HE'S DRIVING ME INSANE Post by Redd715 on Apr 12th, 2004, 11:32pm This is the basic crap I'm dealing with from my boyfriend. No he's not a doctor, in fact he's a mechanic, but he likes to get baseline infomation off websites, then take that and form his own conclusions. I'm new to all this and I really need some advice on how to either get him to stop trying to diagnose me and understand that CH isn't a seratonin dump or histamine dump. Read what he writes..... doc's know headaches have the same effect on the bodies chemicals....however caused...the human body reacts...doc's just don't know why some "cluster" and some last all day...and some...poof condition gone... headaches in any form can be relative to the body tissue releasing histamine or seratonin.....medical fact here.ok...if your nose isn't running or your eyes tearing...I would gather your body is dumping seratonin for some reason...during the headaches I am talking. not important...please...doc's label everything.....cluster, migrane, horners, all are headaches.....what's wrong with learing what causes a headache and the go from there...? so ask for it from the doc or online and look for similarities in the drugs he prescribes....you will see what is going on..and what he isn't telling you. espically anti-depressants....what they do to your brain then you would understand where I am going with this....so you got some reading to do now...just look for similarities in the drugs....you will see.... study Seratonin...find out what it is...how the level is important....and why a blood test can be inconclusive as to the levels because there is so many factors that change it daily.... I hate to say this but your prob is most likely not nerological. you won't listen anyway and discredit it from internet jibbrish....I am talking about you specifically and you are reading in too far to benefit...so forget it I will never voice an opinion on this subject again.....closed...right? I can't seem to get support from this man. He's doubletalking me, and trying to claim he knows what is wrong with me but won't say it. PLEASE SOMEBODY!!!!!!! i'D BE HAPPY TO EMAIL AND CUT AND PASTE THE WHOLE DISCUSSION IF IT WOULD HELP. i NEED HIS SUPPORT...NOT HIS DIAGNOSIS. |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by Superpain on Apr 12th, 2004, 11:57pm Bring him here and hope that he can becomne educated... Or... Clusters hurt and will most likely last for the rest of your life... If boyfriends hurt, you just re[;ace them. [smiley=laugh.gif] |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by thomas on Apr 13th, 2004, 8:30am Tell him first of all that they are not headaches, to compare ch to any other type of headaches is moronic. And they are caused by the hypothalumus releasing substance P, affecting the trigeminal nerve. |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by thomas on Apr 13th, 2004, 8:35am on 04/12/04 at 23:32:59, Redd715 wrote:
And you probably wont, ever. He obviously knows more about our condition than we or the neurologists that treat all of us,(wonder how many thousands of years of medical experience they all have ;)) So, that's it I'm gonna go up to Stevens Point and get treated by this guy, since this internet gibberish here has gotten me nowhere. ;;D ;;D. Don't worry peeps, as soon as I talk to the Dahli Lama of headaches, I'll share all of this wonderful info with you all. Provided you send me your credit card numbers first. ;;D |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by Magman on Apr 13th, 2004, 8:49am Hi Redd715, Welcome aboard. Gee, I moved away from home too early. Maybe if I had stayed in SP, WI., I too could be cured by allowing a mechanic take wrench to my brain?!?!?! As one 'Pointer' to another, tell your boyfiend I would be happy to let him in on the a.k.a 'suicide' name of clusters. Let's see if he can find any baseline info to explain why a totaly sane 50-something could be driven to take such actions if these are simply 'headaches'. Peace, -dan...a.k.a. 357Mag |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by notseinfeld on Apr 13th, 2004, 9:33am Sorry to hear of your pain and then the salt being applied. Armchair neuro-physicians by night/ grease monkey by day can be a deadly combination! Actually, I think it's terrific he takes an interest in the medicine/pathogenesis of what's happening but it sounds more like interest in science than in Redd. There's a supporter's page here though I think he'd be better off reading some posts that you can cut and paste that'll bring home the severity of the condition. Hang tough! nots |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by HypnoticFreddy on Apr 13th, 2004, 10:23am Redd, Honestly, I don't understand what you possibly see in a person who says things like this to you about CHs. I say drop this ass-hat, move on and tell him to go on and fix cars and stop trying to give information about fixing heads. It saddens me that so many women can't leave their men even though they sound like they are brain-dead. -Scott |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by thomas on Apr 13th, 2004, 10:34am on 04/13/04 at 10:23:05, HypnoticFreddy wrote:
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by Rock_Lobster on Apr 13th, 2004, 11:00am Heh heh heh... indeed... a little bit rough on the lad. That said, it is good to learn of an armchair neuro who has a plan laid out to rid the world of epilepsy, cluster suffering & every other ailment related to some imbalance in the brain. Sounds like the cure should be here in the next week or two, well in advance of my next episode. Agreed that he should read some of the supporters pages, but based on what has been pasted he may already know too much to learn any more. Wrokx |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by Bob_Johnson on Apr 13th, 2004, 11:12am Let's find a middle ground between continuing to lose the argument and dumping him. Accept that you will not be able to change him; stop trying because it will only keep your frustration and anger at a boil. Try, "Thanks for caring about me." Then silence. For your benefit, get either the second or third book. HANDBOOK OF HEADACHE MANAGEMENT, 2nd ed., Au. Joel Saper, MD, 1999, Lippincott Williams & Wilkins. A highly condensed volume for doctors but good for "advanced" clusterheads who have a grasp of medical terminology and medications. Covers all types of headache with the section on cluster being brief. Sections on general considerations in treatment and on medications are important. MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. This volume is better organized and easier to read for nonprofessionals compared to Saper's book. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....") HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended. |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by Redd715 on Apr 13th, 2004, 11:41am as a matter of fact he has many redeeming qualities. He not the typical grease monkey either, he is very intelligent, articualte..I think this is comming from a place of mis-information. Granted, to become informed and educated on CH as apposed to other headache disorders would be the key here. Part of this too for him I feel anyway, is taht we don't live in the same area. He's not here to see me in the full throws of an attack. The one time he was here, he left just as the shadows were setting in, so the brunt of the attack was yet to come, and he had arrived after the last one of the daylight hours was long over. We've actually only been together in the same place twice since these set in 5-6 weeks ago. I do believe he was comming from a place of concern, but just too stubborn to hear me when I said I needed support, not a diagnosis. It's finding the right words to impress upon him that it's not that I "don't trust him" but that this is not like anything else he's known. He claims that he knows a few people that changing their diet eneded their cycles. Or quitting drinking did. or quitting smoking did. Then it wasn't true cluster headaches I say. I quit smoking a month before these hit me, and the stress from it all had me start again. There was no trigger when I had that first smoke. The bast came at the usual time. Funny how we become clock watchers awful fast.... |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by thomas on Apr 13th, 2004, 11:44am Redd, check your messages. |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by Redd715 on Apr 13th, 2004, 11:56am Did dear....and replyed.... ;;D |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by Margi on Apr 13th, 2004, 12:15pm Hi Redd, this may be a very unpopular thing for me to say, but...it won't be the first time I've done that here! ;;D I gotta tell ya, being a supporter is pretty hard work. I've been a supporter for 18 years now and I definitely have tried to help Mike (my hubby) learn about clusters. The only way I could do that was by educating myself first. In fact, it's because of this website of DJ's that I WAS able to point Mike towards a correct diagnosis and get him into a neuro for confirmation! So, my hat's off to your man for even trying to understand what's going on for you. Good for him for doing ANY research at all - he could take the alternate route and just not believe that what you're going through is worth worrying about! Considering the fact that you live apart, I find this commendable that he's spending time looking stuff up. And you know, he's not wrong on every point he raises here. There IS seratonin involvement, we do know that - we're just not sure if it's a surplus or a deficiency. Yes, he does make some mistakes in what he says but...he's learning, Redd. At least give him that credit. Another good point he raises is about anti-depressants - there are a few clusterheads here who can NOT tolerate anti-d's because they do affect the seratonin levels. So, don't shoot him down for that. It's often frustrating for a supporter to see their sufferer taking something that they perceive will make things worse. As supporters, we often feel helpless that we can't do anything to stop your pain and I guess we do try to become diagnosticians if we feel you're not getting good information from your doctors. At least it makes us feel as if we're doing something constructive. So, cut him a little slack and help him in his learning curve. We have a Family Services Team in place that might assist you with that - it's at the OUCH site here: http://www.clusterheadaches.org/family/index.htm I chair the Family Services Team, so please tell him to feel free to write to me at that mailbox or at margis@clusterheadaches.ca (O.U.C.H. Canada). I don't mind helping newbie supporters learn the ropes. Forgive me if this is harsh, Redd, but please....don't throw the baby out with the bathwater, ok? (Man, what a horrible expression THAT is!) |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by 9erfan on Apr 13th, 2004, 1:05pm on 04/13/04 at 10:23:05, HypnoticFreddy wrote:
Oh, come on Scott. You know you just want her to dump the man so there will be another available woman on the market for YOU! ;) |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by Redd715 on Apr 13th, 2004, 3:05pm I don't know how to quote from another thread....so Dover wrote... ""I can't help but think we are all being treated for symptoms and not for the underlying cause(s). "" Ok I think that these are the cement boots that my BF has his feet in. But...my point is this...the underlying causes...there are many schools of thought regarding this...are there not? I guess my stance on this at this point is this....it's the symptoms that they know how to treat at this point, or at least try to treat as best as out individual bodies can tolerate or respond to the verious treatment methods. Am I correct in my assumption at this point in the ongoing research process that treating the "underlying cause(s)" is not an option? |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by HypnoticFreddy on Apr 13th, 2004, 3:09pm 9erFan, You must have remembered my CH and Dating post from a few weeks ago!!! Yeah, I guess thats the truth. OK Redd. I am available, and I certainly am quite understanding about cluster headaches (just a joke). -Scott |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by Margi on Apr 13th, 2004, 3:15pm on 04/13/04 at 15:05:32, Redd715 wrote:
Well, Dr. Goadsby and his team (who are pioneers in the research of cluster) have pretty much identified the cause and that (it is believed) is an enlarged hypothalmus, present from birth. Since it is located so deep within the brain, it is not something that is easily snipped. So, yes, we are stuck with treating symptoms. However, if you're getting frustrated with your man because he is trying to blame the cause of your pain on "triggers" let him know that there actually is only one recognized substance that will trigger an attack and that is nitroglycerine. Nitro will set a clusterhead into attack whether they are in or out of cycle. Nothing else will - some folks become more sensitive to different substances (booze, MSG, etc.) while IN cycle, but those same substances are fine if there is no cycle present. I do understand the thinking of trying to identify the cause of this, because normally that is a starting-off place to work towards a cure, but since we kind of already know that the cause is something that is not fixable, we do have to work with the symptom reliefs. Hope this helps. |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by eyes_afire on Apr 13th, 2004, 8:16pm Margi, As usual, your posts totally rock and are very helpful. Don't ever leave. Redd715, There's not much I can add on a personal level to what Margi has said. It is true, we are treating symptoms since there is no known cure for cluster headaches. Since your boyfriend seems interested in information, perhaps he could check out this link... it's one of the most accurate and informative links about cluster headaches that I've ever found: http://www.hospital-doctor.co.uk/hd_news/hd_news_article.asp?ID=2498&Section=Feature --- Steve |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by HypnoticFreddy on Apr 13th, 2004, 9:57pm Steve, Nice website you posted. I consider this more ammo to bring to doctors and neuros. I have moved to 4 states in past 3 years. I have seen 4 different neuros. I feel like it's a gamble whether they'll know what CHs are. I think most neuros do know about CHs. If they don't (I usually want to stab them in the eye), I at least show them some literature. I then politely leave and try to find another doctor. -Scott |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by Thorns on Apr 13th, 2004, 10:36pm Redd, There isn't much that anyone can add to Marji's wonderful post. I believe that we all go through the initial "everyone is an expert on our condition but us and the neuros" with our loved ones and families. We just have to understand that they are simply just trying to help us by doing their own investigative research and to understand it for themselves. I had a similar experience trying to gain support from my girlfriend and loved ones in the beginning. It wasn't until they had witnessed a few attacks that they became true believers and were willing to visit this site and read the info that I have compiled for myself in a notebook. I think that you are lucky to have someone at least willing to look things up info for you. Hang in there, it sounds like he cares enough about you to spend some time researching your condition although he may need a little guidance. Is it possible for him to assist you to your next appt.? Thorns |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by Magman on Apr 14th, 2004, 5:22am on 04/13/04 at 08:49:41, Magman wrote:
Sheesh!! What was I thinking?!?!? Margi...your words of intellect, caring and 'seeing' Redd's supporters qualities humbles me. If/when my next cycle hits, may I send my supporter in your direction….she will certainly need assistance, and I would like her to get the best. Redd…we generally don’t delete our posts here….so like a court room, I withdraw my earlier statements. I can only claim…jumping the gun without all of the facts, and a need to respond to someone from my hometown. I think I do better one-on-one than open-forum when it comes to presenting ideas or assistance. Peace and PF’s, -dan |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by Margi on Apr 14th, 2004, 10:08am on 04/14/04 at 05:22:14, Magman wrote:
Absolutely! That's why our Family Services Team is here. :) |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by Linda_Howell on Apr 14th, 2004, 10:59am Redd, When I just read your original post, the first thing that came to my mind was...."yeah the guy is very mis-informed but he seems to care enough to do all this research and TRY to figure out what is going on in your head, why you hurt, etc" Then after reading all the responses, I have to admit I thought....He might be better off diagnosing what's wrong with my carburetor. It's leaking like a sieve right now. I understand your frustration hon, and all I can add to this right now is to take Margi's advice. She is the GURU of supporters around here and a very knowledgable person when dealing with this kind of thing. Good luck to you. LindaH |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by Bob P on Apr 14th, 2004, 11:13am Hey, good for your boyfriend. Anyone who researches clusters will find that serotonin and histamine are both involved. In fact, cluster are known as histamine headaches and histamine desenitivation is a treatment for clusters. None of us, including the researchers, know wht causes clusters. We do have an abnormality in our hypothalamus but how that causes clusters is still unknown. Read, read, read and you'll find all sorts of info on serotonin and other neurotransmitters that change with cluster. 5HT, CGRP, substance P, melatonin, etc. |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by Margi on Apr 14th, 2004, 11:18am on 04/14/04 at 11:13:03, Bob P wrote:
Is that a Bobism? ;) |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by Bob P on Apr 14th, 2004, 11:33am That's Republican english (ala Bush and Quayl). Desensitivation - the process by which being corrected by anal broads from up north no longer bothers me. Example: I have become desenitivationed to yur correcting my spellin'. |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by Margi on Apr 14th, 2004, 11:44am and I, too, have become desensitized to Californians who can't find the proper route to get to Canada! |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by Bob P on Apr 14th, 2004, 11:58am Two mountain passes in one day! We buy the buffalo burgers, you buy the poutine. |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by Linda_Howell on Apr 14th, 2004, 12:21pm California to Canada.....Interstate-5 all the way. How does someone get lost? ::) LindaH |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by Margi on Apr 14th, 2004, 12:21pm If you're going to try both passes in the same day, we may have to put a lil shot of valium in that poutine. :o |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by Bob P on Apr 14th, 2004, 12:37pm Linda, We're going via Tetons, Yellowstone, Black Hills, Glacier, Banff, Jasper, Humboldt redwoods. Guess you could say it's kind of a big loop through the northwest. I don't even know where the passes are. They all just look like lines on the map to me. I can feel my 5HT levels dumping now. |
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Title: Re: PLEASE HELP HE'S DRIVING ME INSANE Post by Melissa on Apr 14th, 2004, 7:52pm Redd, I posted this to your thread on the general board yesterday, but I'll post it here as well... Redd... First of all, hello! Second of all, what is the name of the neuro you're going to see tomorrow? By the way, I'm from Stevens Point (born and raised), but now live in Galloway (out past Rosholt). My neuro is Dr. Michele Klasinski, who's in the doctors park behind Cooper Motors, and she is a wonderful neuro. Anyhow, if at some point you'd like to talk, or meet, drop me a PM, ok? I'll help you out anyway I can! Take care, mel |
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