|
||
|
Title: Please help Post by sadwife on Sep 28th, 2004, 3:09am :-[ Please someone help me, my husband has just been diagnosed after 3 years of suffering. Only now it has gotten so bad he is actually asking me to "kill him". I can't imagine anything so crazy nor can I figure out what to do to help him. Tonite we for the first time tried zomig, one hour later it still wasn't working. so now what, what can we do? Someone please help, my house is small and I know my girls can hear him crying, screaming and pounding his head on the floor. Does anyone have a miracle, (don't worry contrary to his popular belief I'm still praying God will work a miracle. Thanks for listening and please WB with some new suggestions... Thanks, Sadwife |
||
|
Title: Re: Please help Post by Callico_Kid on Sep 28th, 2004, 3:36am Dear Sadwife, I'm sorry that I don't have any magic solution for you. I understand your feelings of helplessness, and I can relate to his asking you to "kill" him. Unfortunately he is partly serious. The pain he is undergoing is extreme. However, there is hope. It will probably take a while before you are able to find a solution that will make a big difference, but stay with it and don't give up hope. Read, read, read the material available here. Particularly I would suggest O2. It works well for me when I get to it early enough in an attack. You have not mentioned other meds than Zomig. Imitrex is usually the abortive of choice for most. Have you started him on any preventatives? Verapamil and Lithium have been lifesavers for me also. for the short term, ice packs on the affected side ofthe head is helpful to some, while heat packs work better for others. Sometimes for me a hot shower is helpful. I also use a lot of coffee as early on in an attack as I can. That is just a few ideas. You will find more on here as you look. Keep us in touch, and feel free to PM or email me if I can help. If you would like to talk I'll be happy to give you my phone number in a PM. Praying for you both. Jerry |
||
|
Title: Re: Please help Post by K-9 on Sep 28th, 2004, 3:48am Sorry you're here, but glad you found us. I don't have much more to add than what Callico said, I'd say that O2 is prolly the best for short term relief. Try different things like he said and if things work, and then they all of a sudden don't work, try something different. For me, my HA "mutates" and I have to be quick to change, or sense a change and try to be ahead of it. If you can, get him on here too, he needs to know he's not the only one who feels the way he feels right now. I know I've been there, sometimes still am. I'll be thinking of you guys......welcome!!! |
||
|
Title: Re: Please help Post by Gator on Sep 28th, 2004, 3:51am on 09/28/04 at 03:09:45, sadwife wrote:
I'm very sorry to read of your husband's suffering and of your family's pain as well. First off, don't think him crazy and certainly don't suggest to him that he might be. Extreme pain will do this to a person. Trust me, from his end the request is not crazy. Some, if not most, of us have been there. I'm not saying you should even consider his request, just giving you a small window into the mindset. Just be there for him. Hold his hand and tell him everything will be alright. Kick him in the ass and remind him of what he has to live for. Do whatever it takes, but also be patient with him. I'm sorry to say there are no miracles here, except the miracle of the love and support you will find. Where cluster headaches are concerned, you will have to make your own miracle. Information is the key and there is tons of it in the links to the left and in the personal experiences of the people here. Read, Read, Read everything here and on the OUCH website. Print stuff off that applies to your situation adn take it to your doc. Most docs are unfamiliar to say the least with treating CH. From your post, I gather he does not have oxygen? About 80% of sufferers find that 100% oxygen at 10 - 15 liters per minute through a non-rebreathing mask for 10 - 20 minutes will abort most of the attacks. Go the the doc and very forcefully request he prescribe the O2. Is he using the Zomig pills or Nasal Spray? Pills take too long to be really effective. I used the Nasal Spray with about 95% effectiveness in 10 minutes or less. If he is using the Nasal Spray, make sure he is using it right. If he's getting a lot down the back of his throat, he's breathing in too deep. Don't snort it up into the sinuses - spray it into the nostril and let the blood vessels there absorb it. It could be that Zomig just won't work for him. It does not work for everyone. Imitrex injections is the most widely used treatment. I had to switch from Zomig NS to Imitrex injections due to insurance crap, but I have found the Imitrex works as well, if not better than the Zomig NS. If he or you are sqeemish about shots, you're not alone. I hate needles, but I hate the pain worse. There is also an Imitrex Nasal Spray that some people around here use. Welcome to the website. I am sorry you had a reason to look for us, but there's no better place for a sufferer or supporter to be. Don't forget to take care of yourself in all this. Supporters need support, too. Mike aka Gator |
||
|
Title: Re: Please help Post by Dave_Emond on Sep 28th, 2004, 4:13am Dear Sadwife, Coming here was the first step in helping your husband (yourself and family too). While he's under attack, there's probably not much you can do ... need to talk to him in-between attacks. Go ahead with the next Zomig spray allowed since you'll have to wait to try something else as soon as possible. Or, if he'll agree, if it's a long attack you might consider the ER and ask for oxygen. Don't let him lie down on his back to try to sleep. In between attacks tell him ahead of time you're going to hand him a very hot water bag (wrapped in a pillow case) ... he may bury his head against it to the floor or even wall, but is a diversion somewhat and can also help protect his head. Like Jerry said, some people prefer ice, you can try both as you wait to get another different prescription. (Suggest Imitrex Nasal or injection first.) We can send prayers for now and offer small hints, wish we could give you a miracle instead. Try to get him to come here in-between attacks, not going to find more help anywhere than here ... or understanding. God Bless and keep in touch, a lot of information and care in this group. Dave |
||
|
Title: Re: Please help Post by OneEyeBlind on Sep 28th, 2004, 7:52am Either a very hot rag or a very cold rag (depends on the sufferer) sometimes provides some comfort. I used to hold mine right over my eye, but others hold it to their neck. Coffee also seems to help some. I also did jumping jacks to get through an attack with no meds. Cold air, like the vents in your car pumping from the air conditioner, sometimes help. If you can get meds, I used O2 (please read the link to the left to make sure hubby uses it correctly), and Imitrex injections. The injections come in an epipen (pre-loaded and easy to use). I love my Imitrex, it aborted an attack in less than 5 minutes ! Good luck, and I'm glad you found us ! |
||
|
Title: Re: Please help Post by Jeepgun on Sep 28th, 2004, 8:48am Dear Sadwife, I'm glad you found us, though I'm sorry that you had reason to seek us out. Check out the medical links to the left. When I first arrived here, I printed out the medical study, and then went through with a hi-lighter and highlighted my specific symptoms, and then the medications that were listed as being effective for CH. I took that to my doctor and she read it, and then said, "Okay... I'm willing to work with you on this." She gave me a script for injectable imitrex and verapamil, and my last cycle, though not entirely free from pain, was considerably more bearable. Hang in there.. Sometimes, I think supporters have the most difficult role of all... -Frank |
||
|
Title: Re: Please help Post by StueyStu on Sep 28th, 2004, 9:14am Sadwife, I am sad for you. My neuro put me on 960 mg a day of verapamil SR and that finally broke my cycle. I've been pain free for over a year now. Some people consider that a high dose but it worked and I had no side effects from it. I've never tried the 02 or lithium but do use the imitrex injections which have been lifesavers during those roughest times. I wish you both the best and he definitely needs to get something that will work faster than an hour (imitrex injections or perhaps Relpax). I wish you well. Stuey |
||
|
Title: Re: Please help Post by nani on Sep 28th, 2004, 9:24am Sadwife - I pray for death often, but have not yet asked my husband to kill me. Verapamil, oxygen, Imitrex and Neurontin work for me. So do ice packs and pressure on the temple. Both of you hang in there. You are not alone. [smiley=hug.gif] |
||
|
Title: Re: Please help Post by TomM on Sep 28th, 2004, 1:36pm SadWife-- The best thing you can do is be supportive for him and read, read, read. Digest this site to get a better understanding of the guilt, pain, and suffering your husband is enduring. I also know, that you suffer too. It is not easy to watch some one you love beat their head against the wall and ask for the gun. I'm not going to give you my tails of woe because this thread is about you and your husband. O2, Imitrex (nasal or injection), Maxalt, Verapamil, and Prednisone are a few drugs you need to research. Good Luck and keep the faith! :) TomM |
||
|
Title: Re: Please help Post by minnie on Sep 28th, 2004, 1:50pm Dear sadwife, I'm sorry your family is going through this but also happy you found us.My husband Billy J. is the ch'er of our family so I know what your going through as a supporter.we have 3 daughters 6,7 and 12 and yes they know sometimes whats happening (we live in a trailer).you've been given good advice here oxygen and verapamil have helped my husband but everyone's different. when my husband gets hit while our daughters are home I try to distract them.Billy wants (needs) to be alone.I don't know your daughters ages but here's some ideas.get a box with special toys that make them concentrate bring it out when he's getting it .switch it every once in a while so they are not associated with the headaches.depending on the age a cd player or cassette tape player with head phones.the girls get Billy a icepack and soda then leave.he doesn't want the soda but it makes them feel like thy are helping.Talk with your husband when he's NOT getting hit.Ask "what do you want/need me and the girls to do?" He may want you there he may want to be left alone.Please don't take to heart what he says especially if its leave me alone.He needs to deal with the pain his way it is nothing against you or the comfort you want to give him. join ouch and please visit the supporters section here on ch.com you are not alone. Ask him to get on here read and get to know people we are a big family here and he is not alone.education is the key finding a doctor who knows how to really treat clusters is not always easy.You and your husband will have to be very pro=active in his treatment.check out the various preventatives and abortive on this sight and ouch.print out the info if you have to and make sure that follow up tests are taken if needed.some medication side affects need to be monitored and tapers must be followed. IM me if you need to talk .Please remember you both need to take it one attack at a time .He will make it through the attack the pain will end.enjoy any pain free time with the family.there is also a chat at headache supportgroup.com.usually about 10pm eastern time people start showing up.It's there 24/7 so If no oneis there sign in and someone should be there soon.also come here and make a post like "chat anyone" and usually someone will show up. http://headachesupportgroups.com/echat45/public/index.html keep checking in and let us know how you guys are doing.lots of support here. Minnie edited for spelling and clarification |
||
|
Title: Re: Please help Post by Ree on Sep 28th, 2004, 1:56pm This was a hard post to read... wow. When I have seen Dave this bad he has said he doesnt care and that to die in the midst of an attack would be sweet relief. This would scare the Hell out of me. That is why I don't let him go it alone. You truly need to talk to his health care professional. Send them to this site or find a Neuro that is familiar with CH. If he is acting like he would hurt himself please don't be further than a closed door away from him... get him on a preventative, and abortive and 02 Believe that it will go away for a remission period so you can regroup. Don't let this kill your spouse your family and your marriage. Fight back... God bless you and don't feel alone we are here for you. |
||
|
Title: Re: Please help Post by aprilbee on Sep 28th, 2004, 2:03pm Sadwife... I just want to *bump* what all have said here and send some PF vibes to your husband...I've had CH since I was 12 years old and I am now 30 my entire family has been effected by these things, and I couldn't make it without their support...you are doing the best thing for your hubby... some tips that work for me are: a hot/cold shower...I go from extremely hot to shockingly cold sitting in a fetal position in the shower...it helps quite a bit...I use Relpax and O2... I hope you have found some comfort here, I know you have found excellent advise as you are a supporter, bring your hubby here and he will see that he is NOT alone... Much love to you hunny!! Hang in there.... ;) |
||
|
Title: Re: Please help Post by cathy on Sep 28th, 2004, 4:58pm This is why I still come here...there's so much love and support going on! It's always sad to have to welcome new people to the board but welcome you are, Im sending you some vibes to help you keep strong and to let you know that you are not alone... PF vibes from across the pond for your hubby too.... Cathy |
||
|
Title: Re: Please help Post by TomM on Sep 28th, 2004, 6:10pm Like many on this board, they are not the sufferer. Cathy's husband, Wes, has CH and she is a supporter. Head to thier advice. I, too, have asked for the gun. It's scary to think that someone could be in that much pain. You have taken the first important step in asking for help here. This is a great place. TomM |
||
|
Title: Re: Please help Post by Ree on Sep 28th, 2004, 6:39pm Cathy me too this is why I am still here too. Tom M and all imagine how this cluster family would be hurt if any of you sufferers did yourselves in. We would all feel to blame... We all need one another, til we find a cure... Thanks Sadwife... for bringing yourself to our attention and for asking for help. Tell your hubby if he ever gets that close to despiration to think to himself, tomorrow could be the day when someone comes up with the cure for these dreadful attacks. Love to you and love to my wonderful loving cluster family........ wow ree |
||
|
Title: Re: Please help Post by BlueMeanie on Sep 28th, 2004, 6:44pm Hello SadWife, Welcome to the only place in the world where there are people who understand. Being a supporter is a very tought job having to witness such an extreme condition. I suggest just letting him know you're there for him if he needs you. If your hubby doesn't want your company during an attack please leave him be and understand it is humiliating to have to suffer the pain and have someone standing by. I suggest you can get ice packs and Imitrex shots ready for him when he needs it and just be there if he needs anything. Please try to get him to come here. He can vent away all he wants. Sometimes it just makes things a little easier knowing someone else out there that knows what he is going through that will listen. here is a link to a chat line: http://headachesupportgroups.com/echat45/public/index.html There is usually someone always there anytime after 8PM and most times someone is there all night long if he ever just wants to talk. You need to set up an appointment with a neurologist as soon as possible for a prevent & abortive plan of attack. Take care. Thinking of you and your hubby. |
||
|
Title: Re: Please help Post by stevegeebe on Sep 28th, 2004, 7:41pm Like you said Ree, it's hard to read. It hurts because it is so personal and yet it's so familiar to many here. Goodwife, you've landed in the best possible place. You've gotten some sound advice from the gang. Keep us posted and we'll pull you through. o2. Steve G |
||
|
Title: Re: Please help Post by alleyoop on Sep 28th, 2004, 7:43pm A lot of people are pouring their hearts out to you Sadwife. Hope all is well and you check in soon. .....................alley :-/ |
||
|
Title: Re: Please help Post by BobG on Sep 28th, 2004, 8:56pm Ditto to all the advice above. Now, about your daughters...... I take it they are young but it doesn't really matter. If they can hear the crying and screaming then they are probably very scared. You must talk to them about the clusters. Please explain in language they can understand what clusters are, where they come from and why the crying and screaming. Young children often blame themselves for pain that parents feel. The kids somehow believe they have done something wrong and it caused the parent's pain. Please let them know the facts and they are not responsible for dad's pain. The kids are a hellava lot smarter than most adults give them credit for. But first they must know the facts. |
||
|
Title: Re: Please help Post by Jayne on Sep 28th, 2004, 9:11pm Hello sadwife. If you look in your private message box, top right hand corner, my telephone number is in there for you. I am so sorry that you have to be here. |
||
|
Title: Re: Please help Post by Kris_in_SJ on Sep 28th, 2004, 9:31pm So sorry you have to be here, but am so glad you are. There's no better place for info and support (as you've already seen). You've already been given the best advice possible - read, read, read! We all respond differently to treatment, and maybe Zomig isn't the best abortive for your husband. And many thanks to BobG for addressing the subject of explaining it all to the children - so important. Here's a link to a great article on medical treatment of clusters. I found this particular link last cycle when I was just about where your husband is now. Took it to my GP - a very empathetic man and a good listener. Verapamil, Prednisone and Imitrex injections turned out to be my own personal salvation (plus the support of my significant other). Maybe it will help. http://www.future-drugs.com/admin/articlefile/ERN020304.PDF Many hugs and good vibes being sent your way! Kris |
||
|
Title: Re: Please help Post by sadwife on Sep 28th, 2004, 10:13pm Wow, I have just gotten home from what seemed to be an endless day after my fourth night of no sleep, and to what to my wondering eyes do appear, but tons of messages filled with love and cheer:) I can't thank you all enough for the love and encouragement you have sent my way. To give an update, after reading about has helped so many of you, I called and got my husband a presciption for O2, to be given at any emergency or urgent care facility. Even better I called my husbands father in the wee hours of the morning (he works for a medical supply company) and by noon he had taken the presciption and delivered my husband a portable tank. what helped even more is after reading I realized that my mother (who lives W/us) takes veraparimil...yes I was bad and at 4am I borrowed one, needless to say my husband went back to work at 2PM, (he has been out since Friday) and I am at this very minute happily typing away. (He doesn't have a CH, so far) I also printed out alot of information and your kind messages, so that he could see how many wonderful people are in the world. (my husband is very pessimistic, and thinks I look too much for the good in others when I should be looking over my shoulder ;) Anyway being that he isn't much of a talker and definitely not a computer geek, he did ask me to speak on his behalf. For the first time in weeks he feels hope, love, and I think a touch of what he has not understood about me. He is actually smiling and telling his family about the wonderful web-site I have found. May God richly bless you all and your families, I couldn't in ten lifetimes tell you what the last 18 hours you have given me has meant. In all the bad that goes on in this crazy world, you have shown me I am not crazy, there are good people you simply have to reach out and receive them. Kindly, Not so sadwife tonite:) |
||
|
Title: Re: Please help Post by alleyoop on Sep 28th, 2004, 10:26pm Dear Not So Sad Wife Tonight, This is going to be brief as I am afraid that I may ruin my keyboard due to my eyes 'watering' so bad. I'm sorry to say, one verapamil isn't going to do much, if anything at all. It takes a few days for it to get in your system. Still, the placebo effect? Glad ya'll have got the o2 going. Make sure it's a high-flow regulator. Wonderful post! Gotta go now. .......................alley :) |
||
|
Title: Re: Please help Post by BobG on Sep 28th, 2004, 10:34pm on 09/28/04 at 22:13:04, sadwife wrote:
And that's what it's all about folks. Job well done. Thanks to DJ for starting this and all the good folks contributing. |
||
|
Title: Re: Please help Post by Sean_C on Sep 28th, 2004, 10:38pm Your a good person Sad, welcome aboard. Glad to hear things are getting a little better. ;;D Just so you know, I say bad things too when I get a kip 10, he really has no control at that point. I think the 02 and maybe Imitrex will go a long way with him. Keep us posted, Sean................. |
||
|
Title: Re: Please help Post by Charlie on Sep 29th, 2004, 12:23am I'm very glad you've learned that this isn't something unique and that you're not alone. Believe me, clusterheads come out of the woodwork to help. We've all been there. I encourage you to look over the technique I'm about to post. It was very effective for me. I wish you the best of luck and let us know how you're doing. Dr. Wright’s Circulatory Technique What follows is a technique learned from a neurologist: I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. I do know that this technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. Try experimenting between attacks. You will find that it gets easier with practice. I was given less than five minutes instruction in the use of method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain. Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. This may be similar as it draws some circulation away from the head. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. So long as you do not slack off, this has a chance of working. This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. It gives us a fighting chance. I hope this technique is helpful and I wish you the best of luck Charlie |
||
|
Title: Re: Please help Post by sadwife on Sep 29th, 2004, 12:39am Charlie, wow, I really think you are on to something. I have been celebrating in a sense because up until about 30 minutes ago my husband was fine. Remembering what I did for our daughter, and him the other night I tried something new. Massage therapy, but it actually starts in the foot. All of our pressure points are linked directly to a point in the foot, this holds for anything from vomitting to head pain. Our feet hold all of these pressure points, while I haven't mastered the knowledge of their specific whereabouts, I have mastered the art of massage, and guess what? Tonite my husbands CH set in and on I went on my quest to provide relief. He started at a 10 according to Kips chart:), I gave him O2 for 10 minutes along w/ a sample of replax, then with the lights out I massaged his feet hitting all spots, (if you do it right you will feel the toxins being released) for about 15 minutes. I don't know if it will hold all night, but I do know it hasn't progressed as it normally does. Thanks for your confirmation and if you like I can send you some info on Massotherapy. I think you are so totally on track, thanks again! sadwife |
||
|
Title: Re: Please help Post by Gator on Sep 29th, 2004, 3:09am I'm very happy that things are looking up. Yes, the pain is real, but a most of surviving it is mental. If your husband needs to talk to someone who has "been there" he is encouraged to drop in any time 24/7. There is usually someone hanging around. Same goes for you. We are here for you both. As was said, Verapamil is a great drug for a lot of people, but one pill won't do it. It takes a week or two to get into the system. Usually a doctor will start a prednisone taper (like a medrol dose pack) and the Verapamil at the same time. The pred keeps the pain at bay until the Verap has time to kick in and then is slowly tapered off. As far as the foot massage, it is known as Reflexology. The sides of the big toes on both feet are the spots that control headache pain. I'm not saying it will not work, but most people that have tried it find that even if it does help with regular headaches, it doesn't help much if at all for cluster attacks. My wife tried it on me - notta. Keep reading and don't forsake the volumes of information here for some miracle cure - there is not one. There are many who would take advantage of your desire for your husband to be pain free. Their schemes run the gammet from harmless pranks for a laugh at your expense to expensive and/or dangerous "medications and non-medicinal alternatives." I would suggest if someone approaches you with any such, "cure" you come here and ask about it in one of the forums available. We take care of our own around here. Again, welcome. You are off to a good start. Gator |
||
|
Title: Re: Please help Post by Svenn on Sep 29th, 2004, 4:33am Check your IM sadwife Svenn |
||
|
Clusterheadaches.com Message Board » Powered by YaBB 1 Gold - SP 1.3.1! YaBB © 2000-2003. All Rights Reserved. |