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Title: I need advice and don't know where else to turn Post by Garys_Girl on Nov 2nd, 2007, 7:39pm Gary has been chronic basically since March of last year. I know this is very little time compared to some, but apart from some relief through busting last October, I can't remember a time when he wasn't in pain. He went into the hospital in June for a DHE drip. It set him vomiting and did nothing to bust the cycle. He lost 30 pounds in 6 weeks. The vomiting started to calm down - but then he started getting hit 8 - 10 times a day with K7 - K10s. And there's no pain free time between hits. A K3 is his baseline these days. He's tried everything. Seeds, shrooms, verapamil, lyrica, depakote, topomax, elavil - you know the list. The vomiting started to slow down, but then the narcotics came because he was so desperate for some - any - relief. Now he's doped to the gills. At first he was happy to be living with just a K1 or K2 (through the use of a 75mcg per hour duragesic patch) and to bring those K8s and K9s down to 5s or 6s with Opana IR. But you know the beast. His tolerances went through the roof, the pain doesn't stop because narcotics aren't effective. They helped a little - then he was just happy to have them so he wouldn't care quite so much that he was in so much pain - and now he's just addicted and pissed off at himself about it. But the vomiting is back. He threw up 42 times yesterday. It seems as if his body is trying to throw up his foot. He's going insane, and his spirit is breaking. The "I can't take this anymore" has become a mantra. We can't stop the vomiting. He won't go to a psychiatrist. He won't go for biofeedback. He won't go for acupuncture. He won't go to yoga. He won't go to Tai Chi. He won't go for hypnotherapy. Any suggestions? I just sit here and wait for him to either get his senses back and decide to quit the narcotics - or kill himself, whichever comes first? I cannot tell you the gallons of tears I've been crying. He doesn't usually see me cry because he spends so much time in the bathroom. And when he comes out, he probably sees six eyes when he looks at me anyway. Gary's always been a fighter, and he has an amazing threshold for pain. Even now he does try to keep "up" - but I can tell he's losing the battle. When he's vomiting for the 30th time and weeping on the toilet, choking, what can one feel but that I understand he can't take it any more? And imagine - we're partners in work, and he's still managing to work 3 - 4 hours a day through this, sound fairly intelligent and normal to most people. And he still gets into NYC to market one day every other week! (But then they see he's not OK! You can't help but notice someone grabbing a garbage can and running out of your office every 10 minutes). I remember when I first found this place Marge said something like - you can only stock the arsenal - he has to chose the weapon. Well, he chose. And kept choosing. And got to the end of the line. And none of it worked. And now the weapon owns him. And it doesn't work. His spirit is breaking because of the vomiting. I'm convinced it's stress induced because nothing works for it other than not moving and my unplugging the phones and turning off the cells on Friday night without telling him. He'll only vomit like 10 - 15 times on Saturday, and Sunday will be a great day, vomiting only 3 - 4 times. But then Monday comes again.... If anyone has any suggestions that may help, I'm listening. Thank you, Laurie |
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Title: Re: I need advice and don't know where else to tur Post by aloneuk on Nov 2nd, 2007, 7:55pm shit.... This has to be one of the hardest post i've ever tried to reply to.. I really don't know where to start i'm trying so hard to think of something to help ease your pain .... All i can offer is an ear to listen and to say we're here, im sending all the good vibes and prayers i can muster right now :'( [smiley=hug.gif] hang in there sweetie i'm rooting for ya someone wise will be along shortly to offer some advice thinking of you ike [smiley=hug.gif] |
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Title: Re: I need advice and don't know where else to tur Post by rolo65 on Nov 2nd, 2007, 8:19pm Laurie, has Gary tried lithium? I went through 2 years straight of the same deal before I tried the lithium. It is the only thing that has worked for me. Then always having the oxygen close at hand is important as well. PFW to Gary, and it’s great that you are soo there for him. Roland. |
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Title: Re: I need advice and don't know where else to tur Post by JenniferD on Nov 2nd, 2007, 8:34pm Laurie hon. First, when you need to, you come here and let it out. We'll be here to hold your hand and give you the support and strength you need as we can. I don't have much to offer other than my support for you and Gary and I promise my prayers for some pf time, relief in the stress, and peace to your spirits. I didn't see o2 listed as an abortive, but it has been a godsend to me. If he hasnt tried it, please please look into it. Administered properly it is highly effective in stopping a hit in its tracks and 0 side effects. Please keep posting and letting us know how you both are. We're here for you whenever you need us. all that I have, Jen |
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Title: Re: I need advice and don't know Post by vietvet2tours on Nov 2nd, 2007, 8:43pm Oxygen |
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Title: Re: I need advice and don't know where else to tur Post by Ree on Nov 2nd, 2007, 8:52pm Hey Laurie I know it isnt easy but you have to get him off the narcotics. The beast feeds off the narcotics by making the attack repeat and repeat. Those are called rebounds... What he needs to do it get rid of one Cluster completely to break the cycle. The K1's are probably shadows and if you treat a shadow and at least get him possibly pain free for a couple of hours hopefully the cycle will break up a little and give him some relief. This is what my husband is trying this cycle and its finally working. First he panicked and took imatrex over and over. We took jonnys advice because he told us that imatrex can also cause rebounds... My hubby was having the worse cycle I had seen in a long time... Now he has upped his Neurontin... that is his prevent he is taking 3600 mgs of Neurontin... and for the attcks that do happen he is now taking Zomig nasal spray. The doc also told him you shouldn't stay on the same abortive for longer than 3 days at a time... We also just got a suplement and that only cost me 12 bucks. its called Kudzu... Dave takes one 650mgs of the Kudzu about an hour before the attacks usually happen and it has made the attacks less. He slept through the night last night and the ones that he did get were wimpier he says like a K5 or 6... compared to a 10 and it was abort way faster. WE also swear by this Celestial Seasonings Cinamon Apple tea that I swear makes him relax or melts the pill or something... like a diversion. Then usually if he aborts the attack and he then falls asleep, exhausted of course. What a night mare this has all been for you... I hear ya totally, I understand your helplessness... I thought my hubby was on his way to suicide this time, then I looked up all the information about KUDZU... its worth it... only thing is he has to stop the Verap. it sounds as if it isn't working for him anyhow... Be well and safe and remember none of this is your fault... You can only do so much. He is the Captain of his own ship... The Kudzu is much safer too. I'm still learning about it too. There are many links on our message board about it also.http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=meds;action=display;num=1110584362 Ironically that thread was started by me... hahaha and its been hit over 14,000 times.... I think its a great thing to try... he has nothing to lose... http://www.amazon.com/gp/browse/?node=3766141&lposid=u7-9784821-2,C,1649 love to you and prayers that this night will be peaceful... if you need to call me pm me... ree |
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Title: Re: I need advice and don't know where else to tur Post by Jonny on Nov 2nd, 2007, 9:02pm on 11/02/07 at 19:39:09, Garys_Girl wrote:
Does he drink alot of hard booze? |
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Title: Re: I need advice and don't know where else to tur Post by nani on Nov 3rd, 2007, 1:31am Sorry, Laurie. I have no advice, :-/ but I do have hugs for both of you. Gary's got nothing to lose by trying the kudzu. Hang in there, girl. hugs, nani |
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Title: Re: I need advice and don't know where else to tur Post by Annette on Nov 3rd, 2007, 6:45am on 11/02/07 at 19:39:09, Garys_Girl wrote:
Dear Laurie My heart goes out to you, I am so sorry to hear you are going through this. Its very very hard for you now but Gary needs you to steer him in the right direction. I dont think this is the time to randomly try anything else on your own. Tai chi, hypnotherapy, biofeedback ... even Kudzu wont do anything for him now. His whole system has been too messed up for anything to work properly. He needs professional help and he really needs multidisciplinary treatment. My suggestions are: 1- He needs to detox off the narcotics. Its mandatory that he gets off the stuff. However, he wont be able to do it on his own. he wont be able to even make the decision to stop. He should be inpatient and get detoxed under a specialist in a clinic. He needs to detox because narcotics have a certain effect on the hypothalamus through dopamine and noradrenaline channels. It reduces testosterone levels which again makes CH worse. It can cause rebound as well as drug induced headaches. It can also increase the vomiting by affecting the mesenteric nerves supplying the stomach and the intestines. Most importantly though, it increases anxiety and depression therefore undermining his ability to cope. 2- While undergoing detox as an inpatient, he can be lightly sedated so that he wont fully experience the pain of neither detoxing nor cluster. This can be done under the supervision of an anaesthetist. 3- Once he is completely detoxed, he should start with just oxygen as abortive for a few days. This is critical then that he would now be under the care of a multidisciplinary team including a headache specialist, a pain specialist and a psychiatrist. They should work together to control all of his symptoms all at once. 4- He can start trying the medication again one by one. He will find that once his body has been properly detoxed, and that he has only been using oxygen as abortive, medications that he had tried before but didnt work will have a chance to work better the second time around. You should talk to his GP, he or she should be able to organise this. PM or email me anytime if you have other question. Hugs and painfree wishes to you both. |
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Title: Re: I need advice and don't know where else to tur Post by phil_h on Nov 3rd, 2007, 7:37am Laurie , I will pray for you both . I know when I throw up more than 3x's a day, that triggers and retriggers harder hits . He is truly chronic . Is he seeing a good nuero ? Narcotics trigger hits and makes them worse. I know it's a short term payoff with no gain at all . When I was the hospital last year they had put a patch on me ; I had constant rebound hits until it was removed . The Headache Institute in NYC might offer some help . I saw them for awhile . They tried everthing and really didn't give up hope . I just didn't respond to rx's. O2 is my constant companion. He must get the vomiting under control . Wish I had more to offer , but I don't respond to Rx's either . phil h :( :( :( |
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Title: Re: I need advice and don't know where else to tur Post by Linda_Howell on Nov 3rd, 2007, 1:04pm Laurie, My heart just breaks for you and for him. As a supporter you are right up there with the best and don't you forget that. o.k.? As others have said he first needs to detox off the narcotics he's been on. Not an easy thing to do but you can really be a help there. Get him off that Duragesic patch ASAP. There have been many deaths related to that patch. My sister-in-law is a lawyer working on case after case for just this exact thing. ( I swear, I am going to start compiling these horror stories about Narcs. for the next idiot who tells me Narcs. work) Sorry...my own personal rant... He truly needs to somehow get hooked up with a doctor who knows and understands CH better. Tell us what your Ins. situation is and where about do you live and maybe someone can help you get him in to a Dr. who can actually help him more. Linda |
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Title: Re: I need advice and don't know where else to tur Post by deltadarlin on Nov 3rd, 2007, 3:05pm Have you tried ginger for the nausea? You can buy it at a health food store, Wal Mart or any number of places. Or, you can get empty capsules and buy the ginger in the baking section and load the capsules. Okay, you can't get him to try any of those things, but have you tried them? *You* need to take care of yourself in this situation too. An exhausted supporter with frayed nerves isn't too good either. And I'm with Linda on this one, what is your insurance situation (or lacking that, money situation). And I'll ask what others have asked, has he tried O2? Carolyn |
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Title: Re: I need advice and don't know where else to tur Post by Garys_Girl on Nov 4th, 2007, 3:22pm Thank you so much for your thoughts, suggestions and ideas. We have the "M" size tank up next to the bed, and countless "travel" bottles around the house and in the car. I guess, right now, what I really want suggestions for is how to help him get to the point that he wants to stop taking the narcotics. He's at the point where he knows they're making him insane and not helping, but any ideas how to push him to that point where he wants to take the steps to stop taking them? He's GOT to detox and start all over. He knows it, but just isn't quite there yet....... Thanks, Laurie |
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Title: Re: I need advice and don't know where else to tur Post by Jonny on Nov 4th, 2007, 3:35pm Try punching him in the face and telling him he is going into rehab......If he knows it whats the big deal? |
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Title: Re: I need advice and don't know where else to tur Post by Linda_Howell on Nov 4th, 2007, 5:00pm Try to convince him that narcotics are giving him rebound headaches and he might not suffer so much if he'd get off of them. Tell him you heard it here...and NOT just from me, from others who have tried to go this route and found themselves having needless pain because of it. If he is doing as much as you say he is and he has that patch, he needs help detoxing from a professional, as well as support from you in the process. Tell him to come here and Jonny and I will set him straight. ;;D Linda |
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Title: Re: I need advice and don't know where else to tur Post by Annette on Nov 4th, 2007, 6:10pm Ask him why he doesnt want to detox even when he knows that he must. Most likely its because he is already addicted to the stuff and its affecting his thinking. Then you will realise how much he needs professional help now and that you and him will not be able to do this on your own. My husband got to that stage very quickly even with just a few days on morphine while in hospital on DHE drips ! He knew he needed to get off the stuff but the addicted part of it didnt want to give it up. Give him an ultimatum, drag him to the GP and inform the GP that he has an addiction and the addiction problem is now bigger than CH itself. Tell whoever it was prescribed him those patches that if they dont help getting him into detox they will get sued. Understand that he WONT GO wilingly ! You typed that 2 words many times and I highlighted them for you because you need to see where he is now with his mind. If all fails and he simply wont take responsibility then you should walk out of there. Its his condition and he needs to take at least SOME responsibility. You are only a SUPPORTER, you are NOT his FIXER ! You are killing yourself with worry and stress and if he can see that and still refuses to take his responsibility then he doesnt deserve a great supporter like you. You are not his mother, you are not responsible for him ultimately. Sometimes as hard as it is, you might have to walk away. Help him by all means but at some point you will have to dump it back on his lap. Its his life after all. I am very worried about you. Its hard enough to be a supporter. Its hell when you are trying to support someone who doesnt take responsibility for themselves. Please take care of yourself. Please put yourself first. PM me if you need a shoulder to cry on or to vent. I am here anytime for you. Take care, God bless and painfree wishes. |
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Title: Re: I need advice and don't know where else to tur Post by Linda_Howell on Nov 4th, 2007, 9:39pm Laurie, I am worried about you too. Please re-read this: Quote:
If you continue with this kind of thinking, then you are enabeling him. I guess this is the time where we, who try to help others here....also need to give some-one a swift kick in the pants. In a very loving and caring way of course. Hope you are hearing all the good advice from everyone here. Linda |
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Title: Re: I need advice and don't know where else to tur Post by Kevin_M on Nov 5th, 2007, 7:09pm on 11/03/07 at 06:45:19, Annette wrote:
This is all correct. Compounded by CH, (and probably fear now) it seems he should have oxygen arranged to be administered. on 11/04/07 at 15:22:49, Garys_Girl wrote:
He's not there yet because no one's taken him. It sounds like he knows enough and feels bad enough, yet it ain't happening. See Annette's #1 above and keep rereading it to yourself. |
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Title: Re: I need advice and don't know where else to tur Post by Garys_Girl on Nov 6th, 2007, 11:16am Thank you all for your thoughts, input, and words of support. I'm not quite sure how to respond or where to begin. When I found this site (August 2006), my first reaction was to try to force Gary to "do the right thing." I received some very wise advice from Margi: I can stock the arsenal, but I can't choose the weapon. The very first thing Gary tried in fighting the CH was Kudzu, thanks to this site. I posted quite a bit to the thread. It definitely helped reduce the frequency and intensity of the attacks. This is why we thought busting would work. He also immediately obtained oxygen, which he's been using all along. Now, IF it stops the pain at all, it simply comes back with a BANG as soon as he stops using it. We've tried different rates, different times, slowing down the rate before stopping, etc. So the busting with shrooms seemed to help - at first. October through January/February we tried, to less and less avail. He did stop drinking altogether. Gary is my love and my soulmate, and threatening to leave him is a threat he knows I would never carry out. I may be an enabler, but I didn't begrudge the man a shot at trying to spend some painfree time - albeit in oblivion. He'd been in almost constant misery since March of 2006, and it was August of 2007. As a herion addict at 13, he knew what he was getting into. You may look down on my decision as an enabler. And though sometimes I need support as I begin to lose faith in Gary's decisions, I always believe he will, at some point, make the decision to "do the right thing." He is a person of extraordinary intelligence and passion, and a "punch in the face," though something I may feel like doing every once in a while, is not the way I choose to handle things, and not something I think would be productive in achieving the goal. Although I did not choose to follow the career path, I was trained in teaching mentally retarded children. Those skills may not be directly applicable here, but what some may view as "enabling," I guess I view as patience. Gary and I adopted a homeless heroin addict who was 17 years old. You could consider it "enabling" that we allowed her to live in our home as an addict. However, it kept her alive and virus-free, and when she was ready to detox, we were there for her. We did receive counseling as a family and we had her under the care of a Doctor (despite the illegal street drugs). In the end, it worked, and despite her young age and numerous set-backs and detoxes, two years later she was drug free and remains so today. Ultimatums have their place and can be useful tools. I was seeking alternatives, as I believed they existed. Everything came to a head yesterday/today. Gary got to the "I can't take it anymore" point on his own. Thankfully, he was referring to the drugs and not life. Obviously if I thought he was at a critical, suicidal point I would have called an ambulance. Well - maybe that's not obvious as you don't know me. But I hadn't/haven't reached a point where I would just give up on him - either to let him kill himself or to leave him. Gary is suffering both from pain and from withdrawal as I write. Of course he should seek counseling, but that's a separate long and different story. Let's just say it's not something I see worth using an ultimatum for on him. We've decided to attack the GI problems first - and maybe the detox and diet changes will improve the CH problems. Given that the chronic vomiting started with the DHE drip, I see his cluster and his GI problems as being somehow linked. So it'll be a rough patch, and I won't be surprised if there are a few setbacks along the way as I'm not taking away the drugs. But there aren't a lot left, so I'm not too worried. Gary is far from perfect - as am I. But in the end the pain pushed him over the edge, and he had the presence of mind to realize he didn't have much of a presence of mind anymore. And he wants to get control of the situation again. Gary has shed a lot of tears with me the past few days - and not just in pain from the beast. I don't know what the future holds, but I do know we'll continue to face it together. Wishing all sufferers pain free days and nights.... ....and thanking this site for being here, and all who responded for being here, too. Laurie |
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Title: Re: I need advice and don't know where else to tur Post by Kevin_M on Nov 6th, 2007, 2:25pm on 11/06/07 at 11:16:03, Garys_Girl wrote:
Yes, I meant to suggest for if in detox. Quote:
The decision is very painful in coming, hoping he has the strength, but remember the strength of support that he can do it. It takes... there is help for him with that. |
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Title: Re: I need advice and don't know where else to tur Post by Guiseppi on Nov 6th, 2007, 7:00pm You've already received a wealth of advice so I'll keep it short. Oxygen does the same thing to me, stops the CH, I stop the 02, the CH comes right back. Now I take 1-2 oral Cafergot, then start the oxygen. The 02 kills it, the cafergot buys me up to 12 hours pain free. Just a thought. Bless your heart for being a supporter, almost cried reading your last post, you've been through fire child, thanks for hanging in there with him. Guiseppi |
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Title: Re: I need advice and don't know where else to tur Post by TXgirlinTN on Nov 21st, 2007, 12:39am Laurie - I too am a supporter. I have dealt with watching my husband fight the beast for 14 years now. He has had CH for 20 plus years. I too love my husband very much and I am there for him no matter what. Narcotics are sometimes the only relief that my husband gets or at least a breather for a few hours. Sometimes they kill the cycle. He does not abuse nor take everyday. My point...everyone is different, no one else walks in your shoes. You cannot make someone stop doing something until they are ready. All you can do is support them. I do not believe your husband is ready for a quick kick in the @$$ as some would suggest. He will get off that patch when he realizes it does not work. You should go to Alanon meetings for YOU as this will teach you how not to be his caretaker if in fact he is or becomes an addict. You do not want to fall in that black hole. So, please do what you feel is best for you family and well being. I will pray for you and your family. I know how hard this disease is to live with and especially to explain to others. It is nice to have somewhere to share thoughts. Good luck and I pray for a pain free night. |
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Title: Re: I need advice and don't know where else to tur Post by Garys_Girl on Nov 21st, 2007, 10:04pm Texas Girl in TN: That was really sweet of you. Thank you so much for sharing. Gary's been going through some wild times - but he's off of everything now except the patch - and he's down to the 50mcg per hour, and starts the 25mcg per hour tomorrow. He now knows from experience that the narcotics cause rebounds - but the "every day" pain with his chronic CH is back pretty much in full force, so the patch may actually have been helping a it. But he's committed to ending this phase and starting all over. Thanks for the suggestion - it's a great idea. Laurie |
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