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Title: Needing help for Jill Post by Linda_Howell on Oct 5th, 2002, 8:09pm Right now I am at a loss to help Jill (20 yr. old college student) who has been asking for my help via e-mail. Her parents and a neurologis think she's over-acting and the Dr. wanted to put her in a hpspital for observation. She's tried many drug treatments which have not worked. After deciding to not see this Neurologist any more she knows she will have to wait weeks to see anyone else. I have told her to drink lots of water, try ice/heat packs, sit in front of an AC unit or fan, drink strong coffee.....everything I can think of. And still her HA's keep getting worse and more frequent. Anyone have any suggestions that may help her deal with them until she can see a competant Dr. Linda H |
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Title: Re: Needing help for Jill Post by Night_Owl on Oct 6th, 2002, 12:02pm Tried breathing in a paper bag? I had one taped to my face last night. Night_Owl |
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Title: Re: Needing help for Jill Post by Mastifflvr28 on Oct 6th, 2002, 1:05pm Linda, As you know, I've been trying to help Jill too. Very discouraging, her last docs appointment :( Only other thing I can suggest is trying to get set up with some oxygen! Mast |
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Title: Re: Needing help for Jill Post by Charlie on Oct 7th, 2002, 8:59pm All I can say is, try violent exercise, my thing, or stand barefoot on a cold floor. It sounds nuts but it may have the same circulatory effect as my technique. I really hate this thing. Charlie |
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Title: Re: Needing help for Jill Post by paul_b on Oct 8th, 2002, 12:35am During my worst cycle when nothing worked, I focused on surviving by addressing the anxiety of on coming attacks. I did this by knowing that each attack had an ending, endured the pain and blessed its passing. Regrouped with all the remedies you suggested but also minimized my goals. Conserved my energy for the battle with the Beast. Wish I could offer more. |
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Title: Re: Needing help for Jill Post by Chronic on Oct 8th, 2002, 9:19am I've heard that before all the newer medications, people used to dunk there heads in freezing cold water. Actually, it sounds like it might work....at least moderately anyway. Try that or jumping in a cold pool. Just a suggetsion. |
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Title: Re: Needing help for Jill Post by Riccardo on Oct 8th, 2002, 9:38am The main problem for Jill (I too have assisted her for a couple of hours in the chat) is not to cope with the pain, but with the relatives, the doctors and the college environment. All we Fu##ing CHers cope with pain (someone better, someone worse). We have to help her in coping with the: 1st) relatives/parents= ask her the E-mails, and "sink" them with E-mails regarding CH 2nd) doctors= any good Doctor in (It seems me) Maryland? Any way to explain to this Doc how HUGE is the Jill problem? 3rd) College= the Simon Bower's letter to CH colleagues/relatives.... good also for the 1st point Ciao to all you |
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Title: Re: Needing help for Jill Post by Elaine on Oct 8th, 2002, 11:12am Jill was in the hospital a few months back d had that thing some of you have had done the dhe, (I am having a brain fart here) anyway when I called her she said that was not working either. I am with Riccardio we need to find ways to help her cope. The meds I have told her about don't work for her. |
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Title: Re: Needing help for Jill Post by jmorgan52 on Oct 8th, 2002, 1:31pm when I was young many many moons ago docs said I was lead swinging to miss school or later on work. They don't understand the pain. Imigran inj is the only drug that works for me. The waterx3 and my detox may work to break the cycle. Drinking "lots of water" is not explicit enough, you have to drink HUGE amounts (a large glass every 30 mins) and then it may work. |
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Title: Re: Needing help for Jill Post by SFChris on Oct 8th, 2002, 3:02pm Linda, I too have tried to help Jill in the past - she is a very sweet young woman. Since she is in school in Baltimore, she should find a doctor at Johns Hopkins - one of the very best medical centers in the world... Chris |
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Title: Re: Needing help for Jill Post by Starfire3 on Oct 8th, 2002, 5:22pm Lots of water is a minimum gallon a day unless you are sweating or breathing hard - then you need more. Personal trainers are currently being taught that we should drink 1 oz per body pound daily - minimum. That's a lot of water for some folks. They are also taught that for optimal cellular absorption while we're rebuilding our body's water reserves, we should drink about 1/4 cup every 15 minutes. (having repeated faithfully what I was taught, I'll add that I have never worried about drinking only 1/4 cup at a time but that I do try to drink at least a gallon a day) We lose about a quart of water a day through normal exhalation. Any caffein is a minus = gotta drink more water. It's not that bad once you get used to it. You are only peeing every 10 minutes for the first few days. After that your body seems to adjust and absorb instead of flushing toxins or whatever it was doing for the first few days. I see a marked difference in my ha when I have been slack about water intake. The ha are far more powerful and hit more often when I get lazy about it. I have found that keeping up with water, calcium, magnesium, and potassium (multivitamin or oranges and bananas) can help reduce the muscle cramping that pain tension causes when I have a ha. I'm talking about the shoulder/neck scrunch thing that makes my head feel like a 10 pound bowling ball being poorly balanced on a pencil - with my neck, of course, feeling like the pencil about to break. Keeping my shoulders relaxed is a big part of my pain control. I'm truly sorry that I can't advise her about getting support from her people. I am grateful that I've never had to worry about that since I come from a family that understands ha. Too bad she can't generously share one of her ha with the folks who won't believe. They'd change their tunes quickly enough then, I bet. - Starfire |
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Title: Re: Needing help for Jill Post by pjbgravely on Oct 8th, 2002, 5:38pm The only thing I can add is the Hot pepper sauce under the tongue for 5 min. I actually haven't been able to this but eating hot sauce can get rid of one of my shadows. Eating hot sauce will also encourage drinking lots of water. PJB |
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Title: Re: Needing help for Jill Post by Jill on Oct 8th, 2002, 7:05pm Hey guys.....I hope that it is okay that I am posting....I feel bad for doing it. Am not sure why exactly... :-/ Linda had told me that she did this for me but I was not able to check it all.....I can not believe the help is so great. It means alot to me and I take everything that is said to heart...really I do. I made the decision that I do need a new doctor when mine told me that I need psychological help (I hit my head when hit) and was accused of doing drugs. I am in the process of getting a new doctor but it is going to take a few weeks.....it is such a mess. Right now I am getting hit so very many times aday and am getting so tired (physically and emotionally) from them, not to sound dreary or anything. I drink water all the time....I mean that is all that I drink and during a hit I take in ten times that amount....if that makes sense. I keep hoping that if I take in more than it will work, but nothing yet. I have also tried cold cold water, hot water, ice, my head in the freezer, walked outside, breathed very deeply, focused my energy on the blood flow leaving my head, worked on the biofeedback tapes (I cannot focus like that or sit to try), drank very very strong coffee (I really do not like coffee) and more. I am trying to fight this enemy within but it is hard. I really want to try Oxygen and the injections but without a doctor, I have no way of getting them. I am afraid of how much more I will have to take of the pain and am not sure how much I can take. I have only slept an average of an hour to an hour and a half a night for the last week or so and some nights, nothing at all. I can not eat much because the pain is so bad that I get sick....sorry for the details! I guess this is long enough now....I am trying and really want to beat this thing in my head. I will continue to try the ideas that you gave me and if anything else comes to mind, I am willing to try just about anything at all. I can not tell you how much this help means to me.....I am so very grateful. I try to explain it to my parents and they just do not get it. My mom does not ever want to talk about it and my dad is just there. Him and my grandma told me to take two aspirin and call it a day. I wish it were that easy. I have given up hope that they will understand even if that means I am without their support.....so is life... :-[ I have to run......another hit is pending....I can feel it comming. Thanks for the help, Jill PS I hope it was okay that I wrote! |
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Title: Re: Needing help for Jill Post by Ted on Oct 8th, 2002, 7:22pm You hope it's OK you wrote? It's great that you wrote. This is probably the most important post and thread on this board in a while. Where in MD are you? I'm in MA and if we're close enough and you're willing to drive, I'll meet you halfway and give you one of my e-tanks til you get your own. You won't be able to refill it without a scrip but you'll have something to help for a little bit of time with an abortive that hopefully will help. |
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Title: Re: Needing help for Jill Post by Jill on Oct 8th, 2002, 7:38pm You guys are so very awesome.... :) and I mean that! I always feel bad for asking for help...somewhat....I hate to drag others down with me...if that even makes sense. I live in Towson Maryland, near Baltimore. I am in utter surprise that this kind of help is offered and am not if I can accept it .....I feel kind of....guilty I think. I am not sure. Anyways, I thank you all for the help and can not tell yuo what it means to me....I really can't Thanks a million Jill |
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Title: Re: Needing help for Jill Post by Ted on Oct 8th, 2002, 7:50pm I just checked Mapquest. We're 6 hours and 11 minutes away. But the way I drive that's more like 6 hours 10 minutes and 30 seconds :-) . So if we meet 1/2 way it'll just be 6 hours roundtrip. Let me know here or at Jayacat2@aol.com |
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Title: Re: Needing help for Jill Post by Linda_Howell on Oct 9th, 2002, 12:51am See Jill? I told you that you could rely on this family of ours to help in any way they can...Thank you all for your suggestions (love the hat Riccardo) Someone told you that you need phycological help because you bang your head??????????? OMG!!!!!!!well then they're about to take ME away aren't they? Bull-shit!!!!!!!!to that ....we''re called head-bangers for a reason Jill. Hope you printed out Simons letter to show to family and Dr's and school personell. Write me any ol time Jill. Thanks family. Linda Howell |
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Title: Re: Needing help for Jill Post by Jill on Oct 9th, 2002, 1:19am I am enthralled, amazed and delighted with all of the help that I have received...I really am! I know that I have said this....but it is so true. :) I have printed all of the information for my professors for tomorrow (today.....it is so late). I have given up hope on my parents and as much as I am disappointed and upset that they can not understand nor do they try to....I can move on (I think). Yes, Linda, it was my "old" doctor that told me that I needed psychological help....part of the reason why I dumped him. I am still confused over that statement and am a little lost and a lot upset that he said that.....maybe I do...who knows.::) The pain is one thing, unbearable at that, but how do you guys cope emotionally? This may sound like a strange question but I am having a hard time. I am afraid to go anywhere or do anything because of getting hit.....I even have begun to avoid people because it is easier to avoid them than to explain it to them. I am not sure if this makes sense or not but to me it does. The pain makes me doubt my existence in a way and I am not sure why I have to deal with this or what I did to bring it on.....I am not even sure...well....I am not sure how much longer I want to fight....sorry! This is a long post and very sad.....I apologize for that....it is hard enough to deal with the pain but emotionally, I am a wreck too. I hate the looks when I have bruises, the comments from doctors and others, and I hate knowing and waiting for the hit..... I will end this mad charade now and I am sorry it is so bad.....but just my thought to put out there. Thanks Jill |
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Title: Re: Needing help for Jill Post by Riccardo on Oct 9th, 2002, 1:30am you said: The pain is one thing, unbearable at that, but how do you guys cope emotionally?...... hmmmm....years and years of experience.... ;D You are younger than the average CHer, so it's more difficult, anyway. And, if you'll find a man that claims that he loves you (may be you have done that, already) tell him about CH. If he doesn't understand, leave him. It's hard to cope with CH, but it's harder to cope with the beloved ones that don't understand. You can't leave your family, but you can CHOOSE YOUR OWN family. Love and kisses |
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Title: Re: Needing help for Jill Post by LTBullitt on Oct 9th, 2002, 1:49am Emotionally I don't cope, not well anyways. It rather shocks me how well some people do with clusters but I think they are just that much stronger than me. I know having the wrong doctors doesn't help and I'm really sorry about that and have my sympathy. I've seen every incompetent MD out there including specialists and shrinks. I had to see a shrink b/c I suffered anxiety due to the clusters which is pretty normal. But this moron put me on a pill form of thorazine! Stick with the people who understand, find a few and hold them tight. They do seem rare. You probably will fall apart emotionally and/or attempt to murder someone if you keep trying to explain Chs to impossible people. Life is too short and the pain is too intense to add that aggravtion to your life. As I said, I go to pieces everytime a cycle starts so I won't be of much help. It sounds a little cliche but try to look ahead to pain free days. I try to focus on and promise myself all the things I will do when this cycle ends. Leaving my bedroom after months will be my first step. :) yea, small things going to a movie again, being able to read, kitty rescue missions, carmel flavoured mocha :) i asked a question in a post just a while ago about mental health and the best reply I got was along the lines of who isn't menatally messed up with CHs that helps alot, being here and knowing you aren't the only one who feels they are going insane you just have to seriously reward yourself for going through this and look forward to that "We're In This Together Now" is a good lyric :) i'm not so good with words I know, just trying to help I could buy you a present or something? :) Presents always help me! sorry about the spelling, clusters do that too lol ...Andrew |
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Title: Re: Needing help for Jill Post by Linda_Howell on Oct 9th, 2002, 12:07pm Sounds to me like you're pretty good with words Andrew. Hope you get out of that bedroom soon and can go see a movie. Go see the Banger Sisters, if you need a few laughs. Linda |
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Title: Re: Needing help for Jill Post by Drk^Angel on Oct 9th, 2002, 12:39pm Jill... I think emotionally, we all have problems dealing with it. Different ppl do different things to cope. Some ppl try to ignore the emotions, others prolly lash out, some may put on a mask during the day, and cry it out at night. Myself... I've spent a good deal of my life learning to shelter myself from my emotions, and now use that ability when needed, i.e. in cycle. An idea I'm working on giving a try is to like twice a day, let myself get really upset, and clobber the Hell our of a punching bag. You'll find your method of dealing. It may just take a bit of time. PFDAN............................... Drk^Angel |
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Title: Re: Needing help for Jill Post by karen j on Oct 9th, 2002, 2:57pm Jill I am not sure what your insurance situation is however I have a GP in Arnold MD (just outside Annapolis) that is caring enough to have attended a conference on cluster headaches since I am a patient of hers. She is with MD Primary Care and they are pretty good about getting patients in quickly. If nothing else, she could get you the oxygen. Her name is Dr Bailey and her number is 410-757-7600. I know she is about an hour away but just wanted to let you know. If you need someone close to talk with, please e-mail me - karen6468a@aol.com Karen |
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Title: Re: Needing help for Jill Post by Jill on Oct 9th, 2002, 3:31pm Nothing seems to want to go right right now and I am so lost in what I need to do.... I have spent the last hour and a half calling doctors and my insurance, trying to get some help. However, my insurance will not cover anything except Andrews Airforce Base...I am trying to get away from the naval doctors because they are of no help. The other doctors are either all booked or they are too expensive for me. I even tried Dr. Baily and I can get an appointment for her but I can not afford to. I am a full time student and am alone in doind all of this. I can not afford to pay one hundred to four hundred dollars a visit.....there is no way. I am crying now out of frusteration and anger because all I ask is that I get away from this. I just want it to end and it is not. I have missed so many classes, gotten no sleep and can not do this too much longer....no matter how much I want to fight. Thanks for the help and I will have to figure something out eventually...am not sure what though. I was so happy because I had my referral and now look.... Thanks guys, pain free to you all Jill |
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Title: Re: Needing help for Jill Post by karen j on Oct 9th, 2002, 5:03pm I am so sorry you are having such a rough time. My heart just hurts for you :'(. Please remember that I am not that far from you and if you want someone to talk to I can give you my number or maybe make arrangements to meet just so you know you don't have to suffer alone-of course how can you be alone when you have this home to come to :D???? Just stick around here and take in all the advice-these are a good group of people who really care. Please do not hesitate to e-mail me anytime. Karen |
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Title: Re: Needing help for Jill Post by Slammy on Oct 9th, 2002, 5:15pm Karen, Maybe you can print out Jill's last posts and give it to Dr. Bailey and see what she suggests? Slammy 8) |
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Title: Re: Needing help for Jill Post by Edna on Oct 9th, 2002, 5:42pm Jill, gee what good support you have here!!!!!!!!!!!! Use it baby, some great stuff here for you. AND TED, what a sweetheart you are. Sure hoping you and Jill can make those arrangements so that she can at least have some kind of temporary solution that'll help. And Jill, of course we're not expecting you to up and meet Ted, a stranger, all alone (No offense meant Ted) So dear, pack one of those room mates up with you and trek those hours. Know you're in no shape for the drive but it'll be worth it if someone drives you. Remember we all care here and want to help. If you need more help you got my number and my email. EDNA |
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Title: Re: Needing help for Jill Post by karen j on Oct 9th, 2002, 6:25pm Thanks Slammy- I will do just that! Keep your fingers crossed! Karen |
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Title: Re: Needing help for Jill Post by Ted on Oct 9th, 2002, 7:34pm Psssst. Karen. While you talk to the doctor maybe get an extra tank of O2 out of her for Jill? If you can't, my offer still stands. |
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Title: Re: Needing help for Jill Post by Linda_Howell on Oct 9th, 2002, 7:38pm Jill, I have known Ted for a while now and I can tell you with 99.999% assurance that he will be a perfect gentleman and will help you in any way he can with the 02...have no fear. Karen, what a great person for offering to help Jill also...This is what I love about all of you guys....sheesh, now I'm gonna go cry or something. Linda Howell |
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Title: Re: Needing help for Jill Post by Jill on Oct 9th, 2002, 7:46pm I have come to realize how great this place is...I mean I knew it before....but now..I can not even think of the words. It seems just when I could not take anymore, you guys came to my rescue. And if I can ever, ever, ever return the favor let me know...I would do it in a hear beat! I trust everyone and if I could drive to meet you, Ted, I would! I may stil end up doing that!! I am still learning to cope with this monster but you guys are truly my saviors and I am forever grateful! Linda ( you are the best.....just like everyone) and you maybe near tears, but I am bawling :'( .....it was from the pain and anguish and now it is from....I am not sure of the word...the grateness I feel and sense of relief...the word is not comming to me! Anyways, THANK YOU THANK YOU THANK YOU THANK YOU...get the idea!!!! Thanks Jill ;D |
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Title: Re: Needing help for Jill Post by karen j on Oct 9th, 2002, 7:56pm Ted I am working with Jill to get her my extra oxygen tank-duh-my brain is fried I think! Can't believe I did not think of that right off the bat! Just need to get her a regulator-have put out a call to Jonny to find out how to get one. I have an extra mask so once we get the regulator, we should be good to go. Karen |
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Title: Re: Needing help for Jill Post by Ted on Oct 9th, 2002, 8:04pm For a regular e-tank or welding tank? I have one I can loan till she can get a permanent one. It's for an e-tank though. If that's good, give me a mailing address and I'll send it tomorrow. Very cool, karen. |
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Title: Re: Needing help for Jill Post by karen j on Oct 9th, 2002, 8:26pm Ted It is a regular E tank. If Jill cannot locate a regulator, I can give her mine and try and get myself another one. If I can't, then I might take you up on the offer. My Dr has me on predinsone for another three weeks and it seems to be keeping my headaches at bay so I should be good for a bit. I will let you know-Thanks Karen |
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Title: Re: Needing help for Jill Post by Edna on Oct 9th, 2002, 8:39pm Wow Za Wow Za Woo Woo What a great bunch here, ask for help and you shall receive! NOW THAT MY FRIENDS.........is human kindness. Who the hell believes we are crazy??????????????? Love you guys, EDNA |
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Title: Re: Needing help for Jill Post by Mastifflvr28 on Oct 9th, 2002, 8:56pm and THIS is why we are all family :) I love you all, Jill, I'm so glad you are getting some help. Love you too, babe, Mast |
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Title: Re: Needing help for Jill Post by Lapsi_Harmaahapsi on Oct 10th, 2002, 2:41am I don't know if my smartass-approach would help in this.. I'd just love to think that if you printed maybe 20 pages of those stories how people suffered for 10 years and had a hundred doctors appointments before gettíng the diagnose and showed that to a doc (or your parents) it would make them stop and think *draws a deep breath*. |
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Title: Re: Needing help for Jill Post by SFChris on Oct 10th, 2002, 12:22pm Jill, I'll be glad to donate $100.00 toward you seeing a doctor outside of Andrews Air Force Base, so you can get another opinion. Please e-mail me at "cduncanSF@aol.com" and provide me your full name and address. We are all pulling for you. Chris |
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Title: Re: Needing help for Jill Post by Starfire3 on Oct 10th, 2002, 12:27pm Jill - Maybe your navy docs (and parents) will respect stuff from the NIH site. http://www.nlm.nih.gov/medlineplus/ency/article/000786.htm Or the JAMA site http://www.ama-assn.org/special/migraine/support/educate/cluster.htm They mention O2 therapy but I have no idea if the meds mentioned here are any good, meds are not my area of expertise. Maybe somebody else can comment on them before you go handing these to your doc. Please don't be too hard on your parents. Their support can make a big difference to your outlook so do make it an important thing to keep working on them gently. Folks who don't have headaches simply can't comprehend the largeness and helplessness of it all. Keep giving your parents things to read that are from sources they are likely to respect. Leave printouts around the house. Tuck them between the pages of the TV guide. Use a highlighter on points you want to make sure they see. Be gently persistent but try to avoid the kind of arguments which shut down communication. Help them understand that their support is important to you while you fight for your future and that the things they worry about (alcohol and pain pills) are contrary to the treatment you seek. If they are religious folk, talk to your family chaplain and give him/her stuff to read so you can build yourself an ally that your parents are likely to listen to. Maybe your folks will listen to somebody their age. I'm in MD, an hour away from you. More than happy to come speak to your parents or chaplain with you if you think it can help. I can bring along my grown sons (both are most likely older than you) who simply accept the fact that some nites are very bad for mom. They have always hated waking up in the middle of the night and having to lie helplessly in the other room listening to me cry. Maybe their viewpoint and acceptance will help your folks develop a healthy viewpoint of their own. Keep being strong. You are, you know, or you wouldn't be here looking for ways to fight. - Starfire |
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Title: Re: Needing help for Jill Post by Edna on Oct 10th, 2002, 12:32pm Thank you starfire, and all the rest of you here helping jill..........it is truly wonderful JILL........I TOLD YOU we're all here for you dearie........an end to your constant battles are within reach. Talk to you soon, email or call if you need EDNA |
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Title: Re: Needing help for Jill Post by Jill on Oct 10th, 2002, 4:47pm Oh my! I am forever amazed at all the help that I am receiving words can not explain how I feel. For the first time, I can finally see that there may be an end to all of this madness and it feels great! :) I knew that you guys were great, but now you are just awesome....I can not think of a better word! Chris, I love the offer but I would feel much to bad to accept it....if that even makes sense! I feel bad enough getting Oxygen from someone, though I would it do it for anyone of you in a heart beat!!!! As for my parents, I am going to update them to a certain point and hope for the best. I have gotten them to read information that I sent via the email, mail and from books that I have read. I know that they care..I think...it is just that there way of showing it is strange. They avoid the subject at all costs and I am not sure that I can change that. I will keep working on them and hope that they come to my side. I have realized how great people can be, not only here, but also at school. I talked to the head of the science department today and she is trying help me...deal with it and find a doctor (she says that I need an advocate). My chem professor's husband is also looking and I believe that he has found on but I will find out later. I have not figured the paying part out, but I will...thanks! I am in tears because I am so happy with everyone....I am trying not to get too excited over the prospect of having a release from the pain because they are still there and it seems when I think that it will end soon, it wakes up and says I am still here! Thank you so very much for all of the help, I can never tell you how much this means to me and my words can not even express it. I would do this for any one of you....just so that you know! You were right Edna and I thank you for keeping me going....all of you! I love you guys! ;D Jill |
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Title: Re: Needing help for Jill Post by Jill on Oct 10th, 2002, 7:40pm Hey...I know that I just posted on this but somehow I need to get out all of this frusteration and...whatever...that has just brewedl I hope that that is okay. I just got off the phone with my parents and tried to explain the doctor situation to them. My mom said two words to me after I told her what I was doing (trying to find a doc....) and my dad asked me why I was bothering with it...he said that they could not help me. I have tried to include them, gave them hundreds of pages of information and nothing. I thought...I guess hoping...that if they knew how badly I needed a new doc, then they would help pay for it. My dad told me to consider getting my own insurance....how the heck am I going to pay for that???? ??? I guess I let wishful thinking get ahold of me tonight and thought that they would have to come around....so much for that. Now I am mad (sort of) and more scared than ever. I know that there is help on the way but I still need a doc... Sorry for venting but I am so upset with them right now.. :'( and had no where to turn.... SHIT....shit..shit.....the beast...gotta run., Jill |
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Title: Re: Needing help for Jill Post by marty on Oct 11th, 2002, 2:54am This really sucks... 1. You have another $100.00 from me if you need it to see a new Dr (martin.hedgren@sdti.sdmts.com) let me know. Together with SF Chris that should make $200.00 - halfway there... 2. Since I am new, both on this board and as a member of OUCH, let me ask some of you that know a bit more: The membership fee for OUCH is no more, what if it was to be re-instated and used to supplement and manage some kind of medical insurance specifically for CH sufferers that, like Jill, have nowhere to turn??? This probably a "sticky" issue and it would take some real committment to manage and set up - maybe it could be done through Blue Shield or other nationwide insurance carrier. Marty |
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Title: Re: Needing help for Jill Post by sonyjack on Oct 11th, 2002, 9:56pm Jill, please send me your address. I wil be happy to contribute another $100.00 for a good doctor for you. I have been lucky to have had insuraqnce for the last 20 years, but I know how expensive this stuff gets. (sonnyjack@rcn.com) Sonny |
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Title: Re: Needing help for Jill Post by chris on Oct 12th, 2002, 1:43am Dear Jill, I have been suffering with chronic clusters for 5 years now It has changed my whole life!! Ive been on every medication there is. I would do good for a while then I would build up a immunity to the med. Finally my neurologist put me on a combination of lithium and verapamil and it has proven quite effective. I don't really know your history,but this is a suggestion. Usually they will put you on one or the other before they combine the two. Imitrex Injections usually work better than the pill form or the nose spray.Lot quicker!! Good luck and stay strong!! Christopher :)Ps Ihave a few imitrex shots if you need them. Since I am a chronic sufferer I am not limited by my insurance company!! |
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Title: Re: Needing help for Jill Post by marty on Oct 12th, 2002, 4:25am Jill, where are you? I checked with my calculator and re-checked by using an old computer... Guess what?? There's $300.00 for you :). Now, don't be Proud and tell us that you won't take it. As for me, I am now very old, and along the way I have needed help every now and then. So my point is, that by helping you, I am mentally repaying those great individuals that have helped me get through my hard times... So do me a favor, accept the money, get your Doctors appointment - let us know how it went and then we'll take it from there... OK? Marty |
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Title: Re: Needing help for Jill Post by Jill on Oct 12th, 2002, 4:40pm Hey! Did I say how awesome you guys are?? ;D I am sorry that I did answer you guys sooner. I went home this weekend (am still there) and things are not going well. My mom saw me on this site and yelled at me so I have to sneak on while she is out. What a pain....For the first time in my life, I can say that I kind of wish that I did not come home....how sad...I have never felt that way before. I keep getting yelled at and am not sure what I did to deserve this treatment..If only she understood some. You know she compared my clusters to her having a regular, I am in a bad mood headaches >:(...it was nuts! Sorry, I was not writing to complain about my home life...I was writing to thank you all. I can not believe that you all would donate that much money to help me find a doctor, I find that remarkable! I love you all for it (and everything)! I am not too proud to take any money, I have lost that with these monsters, I just feel bad for doing it. That is alot and I am not sure how to take it or.....I do not know. I mean I know I need a doctor and I know that I have no money, but wow! :) I can mail you my address but...man....I feel weird! ::) Does that make any sense to you???? Sorry! I appreciate all of the help....I get the Oxygen tomorrow and am so delighted.....I hope it works like I want. Thanks guys~ Jill |
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Title: Re: Needing help for Jill Post by Riccardo on Oct 13th, 2002, 11:24am Jill, accept that money. Next time, when another jump in this board asking for help, you can do the same favour. ALl the people that offered you this are not here to make "ALMS"..... but do this with the heart and because they suffer from the same beast that attacked you! If you don't want to give your address, you can use Paypal, or other "electronic" ways. But accept this. Please! |
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Title: Re: Needing help for Jill Post by chris on Oct 13th, 2002, 1:57pm Dear Jill, We all know what you are going thru and we all want to help in any way we can. No one understands these things until they have had an attack or witnessed one first hand. Why god puts us thru this I will never understand!! I want you to e-mail me with your add. I will send you a couple imitrex inj. and let you try them. Don't worry they are safety sealed! that way you will know when you go to the doctor if they work or not! There is no pre test for these drugs. the doctor gives em to you and either they work or they don't. But if they do I think you will find they are a god-send. I know all of us here at CH can help you get sraightened out. We all have seen enough doctors , that we pretty much know the routine they go thru. Good Luck Christopher St. Louis ccaldwelloo7@msn.com |
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Title: Re: Needing help for Jill Post by Jill on Oct 13th, 2002, 4:10pm Hey guys! Thanks for all the help....I can not seem to say that enough lately. I got the Oxygen today (Thanks Karen) and I got the regulator and mask in the mail (Thanks Steve). I actually managed to set it up...I was nervous though...but I did it! I did it as soon as I got back to apartment because my last hit was an hour before and I knew another would be there soon...so sad. Lo and behold, an half an hour later...BAM....the monster came. I did just what everyone told me, sucked in the Oxygen right away for fifteen minutes...actually I did it for twenty....nothing. I breathed nice and deeply, praying the whole time that it would work. I know that Karen told me that it may not work the first time but I am so disappointed anyways. It was a nasty hit and I could have used it working.... Anyways, I will try it the next time...and hope that it works. This evil beast is not nice and does not want to go away no how. Sorry for the discouraging news, just needed to vent some....sorry. Cross your fingers..rather I will...that it works soon. Thanks Jill |
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Title: Re: Needing help for Jill Post by Not4Hire on Oct 13th, 2002, 7:20pm hey jill....glad you got the reg and mask....when yer not getting hit....read up on o2 use....make DAMN sure you are doing it right...the mask I sent may not have flat plastic discs over both sides of the EXHAUST holes.....either side of the nose part...this is important.....because if one side has a flat disc and the other side DOESN'T, you won't be getting 100% o2....a fine point but the idea is to get as close to pure as possible.....the bag fills w/ 100%.....the idea is to get that air to your lungs/heart/brain.....o'wise yer ole hypothalmus is sayin' ......MORE BLOOD to the brain... squeeze yer trigeminal nerve= PAIN..... if I'm out-to-lunch.....UELI will whack my peepee...... NO fun! ;D anyways, we're HERE for ya...keep us up-dated......best...Steve N4H |
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Title: Re: Needing help for Jill Post by karen j on Oct 13th, 2002, 7:48pm Jill Just remember to give it time. I really had problems the first couple of times-partly because I felt restricted and I started to panic. Once I calmed down and just took some deep breaths, I was amazed how much it helped. I have you in my thoughts and prayers. Karen PS I have the angel you gave my hanging from my ceiling fan-I love it-thank you so much!!! |
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Title: Re: Needing help for Jill Post by Mastifflvr28 on Oct 13th, 2002, 7:55pm I agree with Not4, Don't give up Jill. The holes in the mask are very important. Also, make sure the regulator is high enough, around 10? Good luck Mast |
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Title: Re: Needing help for Jill Post by Jill on Oct 13th, 2002, 8:14pm Hey....I have tried the Oxygen twice now and can not get it to do anything.... ??? The mask is great; there are no holes like you mentioned. The tank is not leaking, I checked that so many times and I have it cranked to fifteen....is that too high?? Is it me?? I need it to work so bad! I will keep trying and praying that it does something. Does the severity of the attack have anything to do with it? Both times they have been the worst....could that be why it did not work? Anyways, thanks and I will keep hoping that it works..it has to right? :-/ Thanks Jill PS I am glad that you like the angel...you and everyone else are like my angels! :) |
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Title: Re: Needing help for Jill Post by ladybug on Oct 14th, 2002, 12:46pm Hello all, This is my first post in 2 1/2 years. My fiance is a clusterhead, episodic, obviously. During his last bout, we discovered magnesium, and within a couple of days, the cycle has broken and the beast had gone. Well, I guess it had taken a vacation, albiet a long one, it was his longest remission yet. It has now returned, and while the magnesium has not stopped the attacks, I believe they are less intense than other cycles. Maybe give it a try, it is inexpensive and one does not need a dr to prescribe it. It can't hurt, if nothing else. Anyways, the main reason I am posting here is that I am in utter awe and amazement at the support that has been offered to Jill. In the midst of all of your suffering (I mean all of you), and during the time when most of you would like to remove your head from your body, your hearts remain intact. As I was reading this thread, it struck me as to how the human spirit remains, even through something as intense and painful as CH. You are all a testament to what it means to be human, to love one another and to help when needed. Your selfless offerings to this woman have touched my heart, made me cry and reminded me that even when times are bad, kindness and decency can still prevail. Even though the beast seems sometimes that it can't be beaten, it can sure as hell be defied, and you all have proved that! I hope the best for all of you, my fiance included, the best being PFDAN. Take care, :-* Ladybug |
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Title: Re: Needing help for Jill Post by Linda_Howell on Oct 14th, 2002, 1:35pm I, too, am in awe!!!!! From my one little post about "needing help for Jill" just look what has evolved. You people are just the best in the world and I know that Jill is grateful beyond words. Jill? about the 02???????? You need to get to the bottle at the VERY FIRST TINY LITTLE TWINGE that a HA is coming on. Run, don't walk. If you wait til it's almost full-blown, it won't work as well, or at all. LindaH |
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Title: Re: Needing help for Jill Post by baldy on Oct 14th, 2002, 4:51pm Jill: I'm sure someone has told you about Indomethacin. It is an old arthritis medication from the 60's(as I understand from my doctor). I've used it for 15 years or more. It broke my pain cycle and I began to have relief. I still am a CH but they are not as bad nor as frequent in cycle. I had a 5-6 month break..one of my longest and now they are back. If I take the med as I should 3-6 capsules a 24 hr. when the cycle starts, I usually can break it down. As I get older, it seems as if the med has kinda run it's way and I may look for another soon. Point is..when it first was Rx'd to me..it worked. Good luck. regards, baldy |
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Title: Re: Needing help for Jill Post by Jill on Oct 14th, 2002, 5:26pm Hey everyone! Linda has said it...I am ever so greatful for all of the help! I would never have imagined nor dreamed of all the support...to me you are my angels. That may sound strange but it is true. When I needed you the most, you came to my rescue and continue to help. You all truly demonstrate the kindness of the human spirit and admire each one of you for that. If only my parents could see this maybe their view would change but still I have learned alot from each one of you. Okay, I will end this charade of emotional outpour! I am still trying the Oxygen and am trying to learn that moment before I get hit. I have the tank set up right where I am so all I have to do is crank it on but still....I would have thought that it would have atleast lowered the pain some. I mean it worked for one hit..I was so happy but it did not abort it and only lowered it..I guess that is better than nothing. I will keep trying it and trying it some more! I was so counting on it to work and...well...really counting on it! I am still trying to find that doctor and love you all for the help that you have given! Thanks everyone and one day I WILL repay you for everything that you have done and given to me! Jill |
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