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Title: CH's are killing my husband! Post by Chelle on Jan 27th, 2003, 7:01am I am the wife of a CH sufferer. My husband was diagnosed w/ CH in 1999, but has suffered from them for as long as he can remember. He has possibly suffered for as long as 8 yrs now. Maybe longer. ??? Our hope of finding relief during an attack is rapidly withering to no hope at all. When he gets hit with a CH he will do anything to end it. There is no limit as to what he would do. The measures that he has, done, does and will take is not only insane, but some are unspeakable. He has had numerous over doses, one of, could have cost him his life. There was a time about 4 yrs ago , before he was diagnosed, that I walked into the kitchen just in time to see him pour a full brand new bottle of Excederine Migraine (30 count) extra strength down his throat as if it were water. I had an orange in my hand and what he was doing upset me so much that I threw it at him and it hit him in the back of the head. Naturally he started choking....turns out that it wasn't the orange that caused him to start choking...... he didn't take out the plastic capsule that keeps the pills fresh (WARNING! DO NOT EAT!) You get the picture? It was no bigger than the pills. His state of mind was so gone that he didn't have the sense to remove it. I called the hospital and spoke with a nurse on what to do about the pills and poison he swallowed. She asked me why he would take so many, and I told her of his headache. He was rushed to the hospital not only for the pills but the fact he fit the profile of an aneurism. They monitored him for awhile and did a head CT w/ the fluid injection. That was when he was diagnosed w/ CH. He was given 2 scripts, I cannot at this moment recall what they were but they triggered another overdose that hospitalized him a second time. There have been worse times of tragedy as it related to Jason's methods of treatment. He is killing his body by doing the things he does when he has a CH. His body has been through so much and his liver and other internal organs..........well 8 yrs of abuse from large amounts of OTC drugs like caffiene pills, slepping pills, ibprofen, tylenol, asprin, the list goes on forever. He has had numerous prescriptions and natural herbs(i.e fever few, st. johns wort) as well. Jason does not follow reccomended dosages of medicines. His usual is to take double of what ever the directions were. Now he is up to triple amounts, sometimes more. His body is building a tolorance due to his prolonged mis-use of medicine. And I have been told by his neurologist could be a large contributor to his more frequent and severe HC attacks. If anybody has any relief remedies or ideas that do not use medicines ............well , you know what to do. Tell me your secrets! ;) Chelle |
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Title: Re: CH's are killing my husband! Post by Opus on Jan 27th, 2003, 7:17am Chelle, Here is a link for nonmed treatments http://www.clusterheadaches.org/resources/non_script_treat.htm Also good is sleeping propped up or in a recliner to stop the wake up calls. There is a lot of info on this site and ouch. There is a place to post to talk to other supporters. Opus :P |
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Title: Re: CH's are killing my husband! Post by woobie on Jan 27th, 2003, 8:09am OXYGEN!!!! tina :-* |
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Title: Re: CH's are killing my husband! Post by Mark C on Jan 27th, 2003, 8:33am Welcome Chelle, I am sorry about the pain you two are suffering. Clusterhead supporters are tormented almost as much as the Clusterheads themselves. Ask my Wife, she has been my supporter for 23 years now, all with CH. You may die with CH, but you do not have to die from it. Rebound headaches from excessive doses of many medicines are a real concern. However, having also suffered from some other problems also, including, but not limited to an over use of both prescription and other drugs, I would suggest a much more intensive treatment, not just for CH but for a possible chemical dependancy problem. It took in-patient treatment for me to survive. I know it sounds drastic, but so does.. on 01/27/03 at 07:01:37, Chelle wrote:
I have been the cause of the desperation I hear in your post. I know what it feels like. Sounds like you two have suffered enough. One more thing..... on 01/27/03 at 08:09:25, woobie wrote:
Good Luck, Mark |
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Title: Re: CH's are killing my husband! Post by Stampertje on Jan 27th, 2003, 8:51am O2 RULES!!! Sorry hear your story. My advice would be to start using Oxygen. It gives no rebounds and it's not addictive. And Jason should really stop using the OTC drugs. As Mark said, they will give extra headaches when you get addicted... It will be hard for him, but the pills you mentiond won't stop an attack. PFDAN Rik |
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Title: Re: CH's are killing my husband! Post by cootie on Jan 27th, 2003, 11:34am Hi Chelle, I am also a supporter of close to 20 yrs now. I don't recall any over the counter meds that ever worked for Brad....sum made it worse....when attacks hit it was sheer panic time cuz nothin worked till he got sum help from a nero years back and now our regular doc stays purdy informed on treatments so he can help and let Brad have what works for him. He uses verapimil and imitrex....we'll be gettin oxygen next bout..have heard all good about it !!! Good luck....ya need ta get him started on meds that may work or help and fergit the stuff that don't.....good luck........Pam |
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Title: Re: CH's are killing my husband! Post by catlind on Jan 27th, 2003, 11:47am Chelle, Sounds like you guys are really riding this out the rough way. I'm sorry for your situation, but glad you found us. First and foremost, get OXYGEN YESTERDAY. Non-rebreather mask, at min. 8lpm If you can't get it through your insurance, use the local firestation until you can get a tank of welders O2 and have a regulator made (they are about $75 to have a regulator adapted to a welding tank). I truly can't emphasize this enough Second, ICE. Tell him to tie a bag of frozen vegetables over his CH side as soon as he feels it start. Believe me, the ice is nothing compared to the pain. Third, if you are in a cold climate, get out in the cold air and breathe deeply as much cold air as he can handle. If you are in a warm climate, or anywhere really, get in front of an air conditioner and breathe breathe breathe, even if it means in your car. I've gone to my car in the middle of winter (in Upstate NY) and turned my A/C on full blast while huddled in a blanket. Fourth, NARCOTICS AND OTC'S WILL NOT ABORT A CH Check out the medications sections for preventatives and abortives. Most folks have great luck with verapamil and immitrex or another form of triptan. READ READ READ. These pages have saved many a lost soul Fifth, get thee self over to the supporters board and get YOURSELF some support too. You guys have a very difficult job to say the least. Cat |
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Title: Re: CH's are killing my husband! Post by Roxy on Jan 27th, 2003, 11:49am I'm repeating the above advice. OXYGEN Also sounds like he could use some good counseling. I'm really sorry he's having such a hard time (you too...it' s not just the sufferer). Get him off the OTC stuff. Won't help him a bit. Have him sit down at this site and start reading. Good Luck, Tracey |
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Title: Re: CH's are killing my husband! Post by JDH on Jan 27th, 2003, 12:12pm I agree with the others, oxygen is the safest way to go...no ill side effects. Using the OTC stuff for CH is a waste of time and money, not to mention what it's doing to his body. |
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Title: Re: CH's are killing my husband! Post by Margi on Jan 27th, 2003, 12:35pm Hi Chelle - welcome to our nightmare. I wish we did have some secrets to tell you. Please know that there is a Supporters' Group here for YOU as well. We're over at Supporters Forums, and also at the Family Services Team in the OUCH Website button to the left. Lots of us out here who go through what you do, watching your loved one get hit with this beast and being powerless to help. It sucks to be us sometimes, doesn't it? If you need to vent, scream, yell, that's what we're here for - you can email directly into the Family Support Team or mail me directly if you need a shoulder. I'm at moxie_miss@hotmail.com. Is your hubby chronic? (meaning that he doesn't have more than 2 weeks of unmedicated pain freedom in a year) There ARE cluster drugs out there, but there isn't a cure yet. Read all these messages you've gotten here - especially Catlind's - you're getting some great advice. The biggest thing that has helped my husband is knowing that he's not alone with this, that there ARE others out here who understand his pain. And we supporters understand YOURS, Chelle - neither one of you are alone with this anymore. Welcome to the family. p.s. I smiled when I read that you threw an orange at his head. I've never thought of doing THAT before. hmm.... p.p.s. oxygen is the best |
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Title: Re: CH's are killing my husband! Post by cbolony on Jan 27th, 2003, 12:55pm I did a lot of otc to stop the pain did shit does not work. Imitrex injection are great stops the pain in 5-10 mins but you can not abuse them and they are a lot of money.I am going to start using oxygen myself and save the imitrex just in case the 02 does not work on some ch.Tell your husband he is not alone we all feel the pain |
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Title: Re: CH's are killing my husband! Post by ZAIRA on Jan 27th, 2003, 3:35pm Hi Chelle, welcome back! I can understand the dispair of your hausband :'(, because the pain make you do several things. Me too when I have hard attacks, keep several meds, and I go to hospital... When I have shadows I suddenly do or O2 and if it doesn’t work I have imitrex/imigran, so that the attack is not so violent... this is my experience and it works for me. Good Luck for your hausband and also to you, because to be supporter it is very difficult. :-/ :-X Love from Italy, Zaira :-* |
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Title: Re: CH's are killing my husband! Post by cathy on Jan 27th, 2003, 5:09pm Hi Chelle...sorry your having such a bad time.. :'( I too support a husband who has suffered he was only recently diagnosed ...up until then like your husband took OTC meds...useless.. >:( if not suffereing with CH would constantly have rebound headaches from the amount of otc meds he was taking.... There is hope, Wes has now been on Imigran (Imitrex) since October and has just been prescribe O2 as well. These are the ONLY meds he now takes and fingers crossed this is the first time in 3 years he has been completely pain free... I hope you can get some help... Cathy |
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Title: Re: CH's are killing my husband! Post by Svenn on Jan 27th, 2003, 5:22pm I just wont to add my medications for breaking out of cycle.But remember that i`m not a doc,just another clusterhead from Norway Verapamil Retard 120mgX5-7/daily during cycle Oxygene alone at 10ltm for 15 minutes or combined with imitrex-shots does miracles.The shots should start working in 6-9minutes.a few secons after that you are almost painfree Prednisolone in high doze for 10 days 80mg then over a 3 weeks periode step down like 60-40-30-20-10-5mg /daily This is the miraclecure for me,but i`m not a doc.just another clusterhead from Norway |
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Title: Re: CH's are killing my husband! Post by Charlie on Jan 27th, 2003, 8:12pm They're all right and here is one that isn't listed. This thing has worked for several clusterheads: Dr. Wright's Circulatory Technique This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many. When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand. This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate. I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended. This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience. When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance. I wish you the best of luck - Charlie Strand |
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Title: Re: CH's are killing my husband! Post by Groove on Jan 27th, 2003, 10:16pm Hi Chelle Your post reminded me all too vividly of the number of years I spent not knowing what the hell these things were. I saw just about every specialist, from ear, nose and throat doctors to urologists. Each had a different diagnosis and prescribed various meds and voodoo treatments that after so many years of still not knowing what was wrong with me, I became practically immune to most OTC pain relievers - and remain that way to this very day! I can't give any better advice than any of the other people who posted replies to you. Verapamil, Imitrex, and Oxygen... yes, yes, yes!! And stay strong. Even though your husband may not appear to be needing you during an attack, he does. Believe me. Groove |
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Title: Re: CH's are killing my husband! Post by Jarvis on Jan 27th, 2003, 10:27pm Chelle Hi.- Sorry to hear that husband cant take what he wants. ;) ..I think its important to note that few here are doctors but they are 'definately' experienced at being sufferers and supporters.... Many recomendations will not work for everyone...... It may help some to help you if we knew the frequency of his attacks, how often, how long they last, would he be considered chronic or episodic etc... I personally dont think it's uncommon at all to exceed recomended doses for many a clusterhead but there is a limit. There are many ways to deal with pain with and without meds. That requires some pretty strong discipline. Charlie mentions one way. Oxygen certainly is another that works for some. What does he do now when hit, is there a routine he follows, ie; pacing, bangs head, dances, gulps strong coffee. Anything that helps at all besides downing pills.. Put him on here we'll straighten him out, or I should say these guys will. .......mj... |
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Title: Re: CH's are killing my husband! Post by Chelle on Jan 30th, 2003, 2:04am :) WOW, are the first words that come to mind......Thank you all that replied with suggestions for Jas , and a few words of hope for me. I would have given thanks sooner to all of you but was preoccupied with Jason and another over dose from a severe attack. From what I could tell, maybe the worste one ever. He took 10 of tylenol pm and 4 sominex. One a sleeping aide and the other a pain reliever with the same sleep aide in it as the sominex, both boxes state under the warning label not to take any other medicine containing that same drug in it. And to top it all off because he had a stuffy nose he also took sudafed. He woke up out a dead sleep shaking and feeling nervous and paranoid. Come to find out that the sudafed and the sleep aide fight each other and in turn speed up the heart , and because of increased blood flow his head was going to explode. I was relieved when I counted the pills and found out that he didnt take as many as i thought, he has done worse. But it is another episode passed and I await the next, hopefully more prepared with the suggestions from all of you. Again thank you all so much, it feels good to have people to tell about this that understand and dont think that Jason is a total nut and that I am too for being with him. They just do not get it and probly never will. They all have tried to compare miagraines, but it is not even close to the same. Thank you all !!! Chelle |
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Title: Re: CH's are killing my husband! Post by Chelle on Jan 30th, 2003, 8:10am I was looking over the journal that I keep for Jason's dance routines w\ the demon. I noticed that this particular session was 4 days (less than normal) but his pain scale as he told it was off the chart. He also said that although the pain would lesson drastically during the 4 days, that it never fully went away. I haven't had the chance to talk to the doc yet but I was wondering if this has happened to anyone else? Thnx Chelle |
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Title: Re: CH's are killing my husband! Post by domm on Jan 30th, 2003, 6:35pm Chelle - welcome to clusterville. Our hell includes bouts of craziness where we'll do anything to stop the pain. Good advise above - oxygen, Imitrex and Verapamil were my keys to the PF world. The constant pain between bouts sounds like a rebound headache from the fist fulls of OTC stuff he's taking. Get him on O2 as quickly as possible. Good luck domm |
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Title: Re: CH's are killing my husband! Post by Laurie on Jan 30th, 2003, 9:54pm Chelle, It sounds like the two of you (yes, the supporters suffer too!) are having a really rough time. I am so sorry things are so difficult for you right now. I do have a few general comments: Please don't give up on meds because of your past experiences. You mention a lot of meds in your e-mail, but all of them are OTC drugs (aspirin, sudafed, etc) which are NOT effective to treat an acute cluster attack. It's like trying to hunt a tiger with a flyswatter. You can swat as hard as you like, but you aren't likely to hurt the tiger. Most clusterheads here use Imitrex (and similar meds) or O2 as abortants, but there are several other options available. Discuss with your neurologist. Your e-mail does not mention any prophylatic (preventative) medications your husband is taking. There are lots of options, none of them anywhere close to 100% effective, but, with the right combo, you folks may be able to reduce the number of attacks your husband suffers. The fewer attacks he has, the fewer abortives he'll take, and the fewer "rebound headaches" he'll get. Prophylatic meds are tricky, as everybody responds a little differently. It's VITAL!!! that you have a good neurologist you can work with. If you aren't 100% happy with your neurologist, get a new one (this site is a good place to start looks for MDs in your home area). Finally, welcome to this site! This is a great place for you to get started getting familiar with the med (and non-med) options for helping your husband get through his episodes. Best wishes to you both, Laurie |
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Title: Re: CH's are killing my husband! Post by das on Feb 2nd, 2003, 9:48am Mushrooms, Oxygen and regular excercise. |
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Title: Re: CH's are killing my husband! Post by bazman on Feb 2nd, 2003, 11:02am hi chelle i would agree with the above OXYGEN also give the imigran a try(injectable)or even verapmill good luck in finding something bazman ;D |
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