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Title: Must Vent (Long, Sorry) Post by uugghh on Apr 10th, 2006, 2:18pm Hello all! I first must say that I am glad you are all here. I need to vent with people who will understand. I also must apologize for the length of this post in advance. Gotta get it out though. My hubby suffers from CH. Has for some time now. I think it has been for about 4 years but it could be longer. He has sought medical help in the past but mostly no help. (personally I think he has convinced himself that doctors are of no help since we are on medicaid) I have to vent about things from my point of view though so...I dont know if a history is needed. Since he has started having these headaches, he is not the same person that I married. He doesnt enjoy life, his kids, me...anything really. I live in fear of when and where he might get an attack. I try to be supportive but I have to admit, I am losing my patience. We only recently discovered that CH actually exists. Before that, we were both under the assumption that these were caused by stress and pyschosymatic (sp?). Only after reading a book by a neurologist about different kinds of headaches, we found the symptoms and discription matched perfectly. Freaky. Anyway, I just am not sure how much more I can take. I have to do everything from taking care of the kids, cleaning the house, making phone calls for him, making appointments for him....on and on. He is no longer employed and now we have no income at all. I have been a stay at home mom for over a year and a half. Now I am being forced to look for employment (not that I mind) while he stays at home with the kids. I have a problem with that. I am afriad (rightfully so in my opinion) that he will be home alone with our small children and get a headache. This is agonizing for me. I know that he wouldnt hurt them or put them in any kind of danger. I am afraid for him. Would being alone with them make his head explode??? He cannot expect them to play quietly in their room while he lays in bed for 2+ hours trying to get through the attack. I dont blame him...and I am not angry at him...I am irritated with the condition. I love him dearly and want to help in anyway that I can but at the same time, I need help too. Kids need their dad. I need my husband. I am soooooo sooooo sick of taking care of everything myself. I am tired of having to tiptoe around in case he gets a headache. Does anyone know if there are support groups?? God, that would help. Now that I am rambling, I will get off the soapbox and quit whining about how things suck. Thanks for "listening". uugghh |
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Title: Re: Must Vent (Long, Sorry) Post by Richr8 on Apr 10th, 2006, 2:35pm Having stress in my life makes no diference in the number or intensity of my attacks. However, in my depleted state (post event exhaustion), I am far less capable of dealing appropriately with stressful situations, like small childeren, and it is likely that, they might run amuck left in my charge. When I had small children, my wife was always there to tend to them when I was in cycle. Of course, I'm divorced now and the children are grown, and everyone just keeps the hell away while I am in cycle, exept for an occasional call to see if I'm still alive. Probably the ideal situation for a CH sufferer. No sense in having supporters suffer through this as well. Rich |
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Title: Re: Must Vent (Long, Sorry) Post by Charlotte on Apr 10th, 2006, 2:44pm Dear Ugh, Hang in there. I'm a mom of 5 now grown or nearly grown children and a ch person. Next month, I will have been married to Joe for 30 years. A lot of people on-line here have suggested that anyone dealing with children have a special set of toys and activities which your husband could bring out while he's dealing with himself. I also found this helpful. If there was an emergency, he would be able to deal with it. It just might take him more effort than normal. Your husband is lucky to have you. He is the same person you married. It's just that now he has to deal with something that makes him unavailable to you. I hope you hang in there. I appreciate what you're going through, just as I appreciate what my husband goes through. Charlotte ps I also feel that dr.s are little help. |
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Title: Re: Must Vent (Long, Sorry) Post by Margi on Apr 10th, 2006, 4:34pm I, too, have been married to a clusterhead for a long time and yes, we successfully raised a family through cluster cycles. Sure, there are difficult times and eggshell walking times, but the good far outweigh the bad. Yes, there were times when I was having a pity party and thought it totally sucked to be me. Yes, I've had to shoulder more than 50% of the load at times. But there are times, too, when I've been incapacitated and Mike was in there like a dirty shirt doing more than his fair share. I'm a migrainer, so there were times when I had no choice but to become a vampire for up to 48 hours at a time. So, Mike took the reins and drove for awhile. It's what worked for us. You asked if there is a support group? Yes. Right here. You found it. Look no further. Almost instant gratification and answers, this place is open 24/7/365. There are others who walk in your shoes and, contrary to what Rich says here in this thread - there ARE supporters who "suffer through this" and, no, being alone is NOT the ideal situation for a clusterhead. Sorry, Rich. Of course your husband isn't the same now that he has these headaches. Would you be if you were going through this hideous pain? Wouldn't you need HIM to step in for you? You say he goes to bed with a headache. Has he been accurately diagnosed? What meds is he on? Has he tried oxygen? Have YOU explored the alternative treatments that are being tried now. I know it's hard to walk in your shoes but there certainly are ways of being productive in that walk. Read everything you can, learn, learn, learn. And get your hubby on the computer to meet others like himself. THAT is huge in survival, trust me. The feeling of being the only one in the world with this kind of pain is devastating (his pain AND your pain, ok? we ALL need to find others like ourselves!). Now, again...has he tried oxygen? Oxygen is an amazing abortive. Have you looked into it at all? There are things that are helping people that are 'out of the box' thinking and won't cost an arm and a leg. Seriously, read read read!! Hugs to you - I'm not trying to come down on you - just giving you seasoned advice of not letting yourself go down the 'poor me' road. It's a dead end street. Life is what it is - time to seize the opportunity and make a battle plan! Keep us posted, and please do tell us his symptoms and what he's doing to find relief. p.s. and for what it's worth? most clusterheads don't get hit during stressful times (such as taking care of children) because there is usually a higher level of adrenaline in their systems. It's when they relax that the hits start. If he knows he's solely in charge of the little ones, I'm betting he'll be fine until you get home. |
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Title: Re: Must Vent (Long, Sorry) Post by seasonalboomer on Apr 10th, 2006, 4:47pm Hey Uggghh, You've indicated your hubby has had these for some 4 years. How often does he get the headaches and does he have periods where does not get them (Or, if you will, is he episodic or chronic, if you know?). You need to get him to this website. There are ways to manage these things so that life can be lived. Albeit it different, but many people have enjoyed their children's growing up, lived full lives and managed their CH to the best of their ability. There are good number of people who know what hell looks like and found the exit ramp. Maybe some of us can offer directions to both of you. Also, listen to Margi -- she'll point you the right way! Scott |
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Title: Re: Must Vent (Long, Sorry) Post by Garys_Girl on Apr 10th, 2006, 7:25pm Dear Ugh: Long answer, sorry! My husband as well was misdiagnosed for years. We just found this website about... a week ago? I read through EVERYTHING on this site, I went to the links, I went to www.clusterbusters.com, and not only will you find support here, but if your husband hasn't totally given up trying, there are - well - not solutions here, but things that sure do help. A LOT. OXYGEN. Hubby had accidentally discovered that 02 helps abort the pain attacks. BUT he wasn't using a high enough flow rate, we didn't have the correct mask, and he never used enough because he was afraid of running out of oxygen. When you have the proper equipment, a high enough flow rate, etc. OXYGEN WORKS. It doesn't stop them from coming, but it frequently - I'd go so far as to say - almost always - aborts them once they start. Studies have shown that 02 works for 80.6% of people - that's a very high number for this problem. KUDZU ROOT. We don't currently have insurance, so we had to go with OTC options. (In the US you need a prescription for 02, which we already had in place for something else, and the med supply store is being super-duper nice to us). Two days after we found this site we took a couple of hours to track down a local store with Kudzu Root (an herbal supplement). It can be purchased online, but hubby didn't want to wait. After the first day of taking it, the Kudzu Root (NOT KUZU STARCH!!!!) reduced the frequency of attacks, the length of attacks, and most importantly, the severity of attacks. He still has shadows all day, and he is still having 2 - 3 attacks per day, but they are VERY manageable K5 - K7 in strength vs. the K9s and K10s he was having. AND they last for 10 - 20 minutes, not hours. (And sometimes they're just a K3 for like 10 minutes - he doesn't even break out the 02). He is almost in heaven. He started taking 10mg of Melatonin every night. He's an insomniac to begin with, and it takes some time for the melatonin to work its way into your system, but because of the reduced attacks, he's actually been getting about 4 hours of sleep a night (4 hours all in a row). I don't know about your hubby, but for us this is a first in a long, long time. He's gone from completely and insanely exhausted to just exhausted. It's a HUGE difference. Is hubby already taking Verapamil or Imitrex? If you can see a doc, I understand Imitrex (injectible) is generally very helpful for aborting attacks. And though it's not legal, Psilocybin appears to be a very, very effective treatment for both episodic AND chronic sufferers of cluster attacks. (I don't like to call them "headaches" because they are so much more!) It is illegal to purchase, grow, or distribute "magic" mushrooms. But unless you live in GA or CA, it is legal to receive those spores by mail. The rest would be up to anyone who decides to explore psilocybin as an option. But for desperate people suffering so much pain, the results of psilocybin as a PREVENTATIVE are quite amazing (surveys have shown success in excess of 70% of those who have tried it). In fact, a Harvard study was just recently concluded, and results were presented at the National Headache Association's annual Headache Research Summit (in February), and the study has been accepted for publication in Neurology magazine! There's a thread about it in this site: it's the first "stickied" thread in General Posts, called "The Pending Psilocybin Study at Harvard). Page 5 of the thread has the summary scanned in. Again, that can be looked into further at www.clusterbusters.com. So.... that's something that is extreme. But if you've already explored all of the medications, herbs, &etc. described in this site, maybe it's time to consider the extreme. If you haven't tried some of the meds and herbal options, you need to explore these. I've used the "pain level index" as described in the FAQs at www.clusterbusters.com to track hubby's pain. On the first day of taking Kudzu Root and Melatonin, he's gone from what was an average pain measurement of 6,000 - 8,000/day to 1,684 that first day. It's ranged from 600 - 1000 since then - but we're only on day 5 1/2 of his taking Kudzu Root. Obviously because of what it's done for Gary, I'm a HUGE fan!!!!!!!!!!!!! (As is he!) But if hubby's willing to explore these options with you, you may see some of the guy you fell in love with again within just a few days! ....and don't think we don't know what you're talking about. When Mr. Nasty was the only one around, this was not a happy place. I did my darndest to just ignore the really unpleasant way in which communication was presented (when NOT having an attack). Like Ree said in one of her posts - she wanted to flush hubby down the toilet. And haven't we all felt that at some point? But that person we love is still there - just insanely exhausted by dealing with so much pain. And we're doing everything we can to lose the pain so he can be that person he WANTS to be again. Don't stop trying. There are lots of options. And amazingly terrific people here. Hoping for pain free days for your hubby, Laurie |
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Title: Re: Must Vent (Long, Sorry) Post by uugghh on Apr 12th, 2006, 2:49pm ;;D You guys are great. I really appreciate all of the advice. There are things that I (as well as he) are learning everyday. He is a member of this board as well. My post actually stimulated a conversation between us about how ch affects all of us in different ways. I think we are now on the road to "bettersville". I have been looking up every bit of info I can and educating myself so I can assist in his treatment. I am treating it as I treated my learning to breastfeed for the first time. Looking back, I would not have nursed our daughter if I had not educated myself (I would have stopped nursing at the first sign of trouble, ya know?). Thanks again and I will be more active on the boards soon. April |
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Title: Re: Must Vent (Long, Sorry) Post by Dave_Emond on Apr 18th, 2006, 3:30pm April. This is not personally directed at you, but more to all supporters and sufferers: As I write this, I am in extreme pain and hope that does not make anything I say misunderstood. But, I feel compelled to address this issue. I am a Chronic Clusterhead, I also suffer from Lou Gehrig's, Suppressed Immune System, Anxitety Disorder and many other problems that come along with these disorders which means I do not have much longer to live. I will try to focus mainly though on the CH and the roles of sufferer and supporter. For years my wife was as great a supporter as anyone could hope for. But, over time, support turned into trying to control the CH and other problems. This only led to stress, extreme frustration and even anger. This was not good for her health or her emotional strength, she was trying to beat something no one in the world has yet to do. After my brother killed himself and my father died from Lou Gehrig's last year, she worried herself sick that I too would commit suicide, no matter how often I tried to assure that I wouldn't and didn't even believe in it. The control issue got so far out of hand she even had me committed against my will to a Physce Ward! The doctors and psychiatrists had me released the next morning finding no grounds for me being there. Still trying to control instead of support she then took all my medications and would only give them to me as she saw fit and decided she would make a daily routine list for me to live by. I loved (and still do) my wife, but I had to leave her ... the stress caused by all this over the years took its toll and defeated us. So I write this to all supporters, CH will affect everyone in the family, with friends and work. We sufferers love not only our personal family supporters but those here as well and are deeply appreciative of all the support. Just to throw out some caution though, please try to remain a supporter, none of us can control CH, we can merely try to understand what everybody involved is going through both physically and emotionally. It is a sad thing that our marriage was broken up over this, I know of others that have as well. It takes both the sufferer and supporter to work together to cope with this cruel invader in our lives. There is no controlling, only coping. Although it's been several months since we split up, when we communicate lately, I can see the differences in her and she is living a much better life as the stress wears off. From our experience, I hope our story can help save others marriages. During a CH attack is not the time to question the sufferer. But on the same grounds, the sufferer should tell the supporter how they wish the supporter to react so they know ahead of time. Stress and frustration only lead to anger, not only at the Beast, but at each other over time. I can only pray for all to understand that trying to control CH instead of learning to cope will tear people apart, no matter how much love they share. I hope this makes sense and possibly helps someone, Endless thanks to all our supporters out there and God Bless you all, Dave |
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