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Title: Like to learn more about beginning of this illness Post by sevim on Mar 29th, 2006, 9:34pm Hi everyone I don’t have cluster headaches but my husband has been suffering for more than a year every day without any break. I am just upset with medical research about this illness I don’t think so they take people seriously. What I like to learn is how you end up with this illness. The life style for example my husband before he end up with this illness he use to drink a lot of coco 3lt per day, he was taking sleeping tablet also lots of cold and flu medication because of his sinus problem, and he never eat any health food, also he stress over small things. All I want to learn what trigger this illness it must be something there affecting the body. Is anyone able to email me how they got it and how was their life style before this illness. It just killing me in this century they have no medical answer for this illness. Good luck with all of you I know it is hard I have been staying 3 to 4 hours sleep for year and just suffering as much as you because I cant do anything watching someone who is suffering a lot is horrible. Love Sevim Anyone from Australia? |
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Title: Re: Like to learn more about beginning of this ill Post by thebbz on Mar 29th, 2006, 9:53pm Hello , First CH will not kill ya. There is no known cause or cure. Only treatment. http://www.brightok.net/~mnjday/chtherapy.pdf Read the links on the left and that should get you started. jb |
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Title: Re: Like to learn more about beginning of this ill Post by AussieBrian on Mar 29th, 2006, 10:20pm Thanks, jb. Hey Sev, check your emails. |
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Title: Re: Like to learn more about beginning of this ill Post by Richr8 on Mar 29th, 2006, 10:21pm jb is right, no known cause or cure, only treatmenrs. Read all that you can on this site. Oxygen seems to help many so please read all the info on Oxygen and get him some ASAP. If it works, you are halfway there. If he does not have a good Neurologist that understands CH, then you need to find one. It is a horrible affliction, but with the right doctor and appropriate meds, it can be much better. I personally use Prednisone tapers and Verapamil as a preventive. Oxygen is my main abortive and will stop 70% of my attacks within 10 to 15 minutes with little or no side effects. pf wishes, rich |
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Title: Re: Like to learn more about beginning of this ill Post by thebbz on Mar 29th, 2006, 10:58pm Quote:
Brian as much as you make me laugh I would come down there and tell them myself. Keep the laughs comin mate jb |
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Title: Re: Like to learn more about beginning of this ill Post by sevim on Mar 30th, 2006, 12:05am My partner just came from his GP and his very upset. We have no luck with neurologist at all. Beginning of his illness they thought he got sinus problem and he was taking lots of sinus tablet to stop his pain but then his doctor blame him to become addicted to cold and flu medications anyway once they diagnose him (which he stop those medication quickly which show he wasn’t addictive he needed) his neurologist prescribe Zomig for his pain which is only 4 tablet and 5 repeat but you have to get authorised from government because my partner getting pain 3 times a day he was taking 2 to 3 zomig now his blaming him to abuse the Zomig and he send letter to his GP to not prescribe any Zomig and this is not the end he also mentioned that if he quit Marijuana he wont get any headache he will be headache free by the way the reason he start smoking because they didn’t give any help for his pain and he need to relaxes little bit so he smoke before the bed. I told him to not to mention to his neurologist but he was too hones now I am thinking who the hell I am gone go get his medication is this people real doctors or bunch of morons. I have to find some good doctors this is ridicules. |
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Title: Re: Like to learn more about beginning of this ill Post by Richr8 on Mar 30th, 2006, 12:08am Pot may numb the mind, but it is a fairly common belief that it will trigger an attack. Not recommended. No booze, no pot while in cycle seems to be the rule. PF wishes, Rich |
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Title: Re: Like to learn more about beginning of this ill Post by sevim on Mar 30th, 2006, 12:15am didn’t know that he reduce the cigarette but use the pot for relaxation that might be reason that his cycle never been broke down. They prescribe endep which is more for depression but they said relaxing muscle help the pain to go away because amount of the medication he was taking he refuse to take endep and start to pot thanks Rich |
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Title: Re: Like to learn more about beginning of this ill Post by AussieBrian on Mar 30th, 2006, 12:20am We know only just how frustrating it can be, Sev. Talk about rocks and hard places but are you in the position where you can 'doctor shop' to find one who at least knows something about the condition? Did you know that pharmacists can be a helluva help and a good one is better than gold? Firstly, if your mate is going to kick all medications it should be under the control of a doctor. Sometimes it can be a bad thing to just go cold turkey but equally a lot of pain-killers actually cause more problems than they solve. Secondly, are you aware of 'triggers'? These are things that are guaranteed to bring on a hit and they vary for everybody. For many it's alcohol, for others it's just beer or red wine. A lot of people have also commented adversely about pot. It can be a certain food and for some poor bastages it's sex! (I find that helps but it seems to give her a headache so perhaps I'm contagious after all.) Thirdly, a good neuro can help a lot so it's worth persevering in that direction. Keep pushing, darlin'. Only good can come from this. Brian up north. |
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Title: Re: Like to learn more about beginning of this ill Post by sevim on Mar 30th, 2006, 12:28am Yes but what can you do when you got pain that is even making you think to kill yourself. They prescribe this medication for his pain and there is no other things to stop his pain wouldn’t you take prescribed medication 2 or 3 or maybe 4 times if you have pain every 2 hours. Sometimes he will hit his head sometimes he will scream I mean this is unbelievable I am really amazed by your courage still sting and joking. Brain How many times do you get pain. (u guys are funny should of check this page before) |
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Title: Re: Like to learn more about beginning of this ill Post by AussieBrian on Mar 30th, 2006, 12:38am That's the thing, Sev. We do know and you can't believe how much we feel for him. We also know only too well how difficult it can be for someone trying to support him through all this. Up in the top right of your screen it says "Messages". Click on that and then "Subject". You'll be right, mate. We'll see to that. Go the Maroons, Brian. |
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Title: Does any of you got these symptoms Post by sevim on Mar 30th, 2006, 2:09am Does any of you got these symptoms; During the pain sweeting The body temperature drops down most of the times even after pain attack feeling of cold Of course other thing the stomach pain my partner suffering too much pain in the stomach How about food intolerance did you guys become allergic to many foods we just had allergy test and my partner allergic to all foods he usually eats and the food he hates he is not allergic which is vegetables ;;D |
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Title: Re: Like to learn more about beginning of this ill Post by Tracii on Apr 1st, 2006, 2:53am Hi Sevim Like you i am also a supporter to my husband and feel absolutely useless when he is in a cycle, just being there with/for him and getting as much information as you possibly can on this site is a fantastic start, all the people you will chat with here are either a sufferer or supporter and know first hand what you and your husband are going through and have heard the same ol' stories from various Dr's and so called specialist's. You need to keep pushing and pushing until you find something that works for your husband at aborting an attack ,oxygen seems to be a big winner for majority of sufferers but can be hard to get (there are links to the left of the screen check em out). The most recent prescribed medication my husband is on is DESERIL and it seems to be working for now. I hope this has been of some help to you, just remember you do have options find another Dr if you have to ,and another if need be until you find one who has a good knowledge of CH and can help get the right medication for him. |
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Title: Re: Like to learn more about beginning of this ill Post by Sandy_C on Apr 2nd, 2006, 4:11pm Hi Sev. First of all, thank you for being the wonderful supporter that you are. You are reading, asking questions, learning so that you can help your man cope with the pain he is experiencing. Above all, we need our supporters. I would suggest, if he has not already done it, get him to come on these boards himself. Together, you and he can learn so much from the people here. You asked about sweating. Yes, when I am getting a hit, my body temperature will rise dramatically to the point where I sweat terribly. When the hit had ended, I will be chilled as though I were buried in a snowbank. I can't speak to any stomach pain other than possibly just the tension experienced during a hit, or the medications he took during the hit, could cause him to have stomach pain. I have not experienced this, but maybe someone else here can give you some more information on that. As far as food intolerance is concerned, many people have headache "triggers", that when in a cycle they avoid at all costs. For me, it's alcohol (of any sort), chocolate :'(, and during my last cycle, once in a while, red meat (beef) seemed to start a hit. It's not an allergy to these foods, they just seem to trigger a headache. You, and your guy, need to try to keep a log of what he's eating and drinking (or smoking), and try to find those things that seem to bring on an attack. Then, avoid those things like the plague. Hope some of this is helpful to you. Above all, read all you can about CH, and never, ever be afraid to ask questions here. Sandy |
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Title: Re: Like to learn more about beginning of this ill Post by sevim on Apr 3rd, 2006, 1:51am hi sandy thank for reply how often do you get in the cycle and how long it takes. How many pain do you have each day. We just stayed up all night he had terible pain took 1 hour he was using oxygen plus he took 1 zomig but it didnt stop. now he had red mark all over his forehead because he was hitting his head last night and crying with pain. cheers |
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Title: Re: Like to learn more about beginning of this ill Post by AussieBrian on Apr 3rd, 2006, 2:56am G'day Sev, and those questions are so easy to answer and at the same time impossible. For some people every cycle is the same and they can set the alarm clock by it. For others, every cycle is totally different in strength, frequency and duration. Then just to complicate things further today's wonder-drug and miracle cure is worthless next time round. It's mainly a matter of working out what's helping each time and what's either not helping or making things worse and then coping as best you can. So long as you both know we're all in this together and, difficult as it is to believe sometimes, there really does come an end to all this. Just keep your chin up until then. Good days ahead, Brian. |
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Title: Re: Like to learn more about beginning of this ill Post by sevim on Apr 3rd, 2006, 4:15am This is sucks, you are saying even if I sat down right all the causes for example I have found out that he can’t have nap he will end up with pain or he can’t have milk tissle for get rid of toxin because it gave him worse headache ever. At the same time melatonin, fewer few and juicing seems helping him to reduce the pain. Also I have daily diary what he is eating what time pain started, what was the duration, what medication he took. So all those can be worthless in next time. This is really annoying. By the way if you guys like to try this is recepi for juicing and its working 2 apple (red delicious), 2 carrots, 2 celery and juiced 2 times a day specially before bed. All good vitamin C it helps to rebuild your immune system Apologies for any grammar problem cant speak English perfectly ;;D |
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Title: Re: Like to learn more about beginning of this ill Post by AussieBrian on Apr 3rd, 2006, 4:25am I'll give that recipe a rip first thing tomorrow with just a couple of drops of Tabasco. Staying healthy during a cycle is very important and for many of us it's difficult to do on account of interrupted sleep and the like. Good onya for seeing he gets his tucker. Another thing worth a look at is stenuous exercise at the first hint of a hit. A lot of folk get great relief from going for a jog or the like. Me, I'm a pacer, but to each his own. Real footy not AFL, Brian. |
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Title: Re: Like to learn more about beginning of this ill Post by sevim on Apr 6th, 2006, 8:38pm Hi all again I am just tired last too days had too little sleep. Do you all refuse to go to bed when you have teasing? I finish work early last night so my partner can go to bed earlier. But when we came home he had teasing and for hours I told him to go to bed try to sleep but didn’t happen. Sometimes I get upset so I have to ask all of you do you keep yourself wake a lot. My partner gets 4 to 5 hours sleep and he cant have nap because it makes pain worse but if you don’t have sleep wouldn’t you end up with more pain. cheers |
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Title: Re: Like to learn more about beginning of this ill Post by AussieBrian on Apr 6th, 2006, 9:43pm "Too scared to sleep, too weak to weep...." Yes, Sev, we know all about that and then some. He could try sleeping either with lots of pillows or even sitting up in a comfortable chair. Sounds silly, I know, but it's remarkably effective for many CHeads. Another trick is setting the alarm to allow only an hour and a half sleep at a time. Takes some getting used to but, hey, any port in a storm. Stay strong and remember to think about yourself a little bit, too. He needs you. |
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Title: Re: Like to learn more about beginning of this ill Post by Jasmyn on Apr 7th, 2006, 12:28pm Hi Sevim and welcome. I am glad you found us. This is the place where people understand what you and your partner are going through. This condition is very frustrating but we do not give up hope that someone will find a solution to this problem someday soon. Sleeping can be very difficult as you know when you just fell nicely asleep, you are going to be woken up with this terrible pain. When you do not get enough sleep, then this pain just gets worse. So what can you do? Like Brian said, some of us sit and sleep, instead of laying down. I put an icepack or a bag of frozen peas under that side of my head with a fan blowing at the top of my head. It helps sometimes. Also drink a lot of water. I really can say that pot starts of a headache, so it is not a good idea for me to use it. You must get in some sleep yourself and look after yourself as well, it is the best way to help him in the end when you are not so tired too. We are all here to support both of you. Hang in there. Jas |
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Title: Re: Like to learn more about beginning of this ill Post by sevim on Apr 10th, 2006, 7:36am thank for all help last night he didnt wake up with pain because we used many pilow ;) |
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Title: Re: Like to learn more about beginning of this ill Post by Icey on Apr 10th, 2006, 8:58am Well done Sevim ! .. I must stock up on many pillows ;) |
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Title: Re: Like to learn more about beginning of this ill Post by Garys_Girl on Apr 10th, 2006, 8:16pm The attacks do hit most often at night or at the start of REM sleep (thus waking up from a nap with one). Yes - hubby sweats like the dickens during an attack. He RADIATES heat. And because he's all sweaty, after an attack he's freezing. Glad we have both an air conditioner and a heater! He puts a very cold compress over his eye, nose and cheek during an attack. Ice pack is too cold for him. If it's during the day, he'll use 02 and the equivalent of 2 or 3 cups of espresso (for the caffeine). If it's at night, he'll use just the 02. He's using Melatonin (10mg) at night combined with 1200mg of calcium (taken with the Melatonin) and 500mg of magnesium in the morning. Being reclined, unfortunately, doesn't help Gary sleep any better or worse than lying down. During an attack he'll get up and pace, or stand up against the wall banging his head against it. If he's just eaten, he will often throw up. If he swallows anything but coffee or ice-water during an attack, he will immediately throw it up. (He tried various narcotics before we knew it was clusters). I suspect he has developed some food allergies, but he hasn't been tested yet. If your partner is forced off all of his meds, TRY KUDZU ROOT. I don't know where you can purchase it there - online? Kudzu Root has significantly reduced the severity, frequency and length of his attacks. There are warnings about using Kudzu Root with the triptan drugs. My hubby, like your partner, was misdiagnosed for years. Yes, he did have sinus infections - but as those got treated and we still had the problem, in the end we had to look for answers ourselves. And... we found this site! There is so much info here. One of the most frustrating things about CH is that there is NOT one thing that works for everyone or even all the time. But there are things that work for quite a few people a lot of the time. And oxygen is one of those. So... read, read, read, and then read some more. There is so much info here, and there are so many things that can be tried. And without any doctor at all, we've already made HUGE steps in at least reducing the pain he has to deal with. Good luck, and keep us posted! Laurie |
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Title: Re: Like to learn more about beginning of this ill Post by D_Robinson on Apr 12th, 2006, 7:00pm One thing I can tell you about zomig is you can really screw yourself up by taking too many of them. Been there done that, have the tatto and t-shirt, twice infact, I am that stupid. It is very hard to deterimine the difference at least for me between the inset of a cluster and the inset of a rebound headache due to taking to many zomigs. I had it happen in the summer of 2003 and my doctors nurse really cautioned me about this, and even tho I was really careful I fell into the same trap this time (I refuse to have more the 10mg in my system in any 24 hour period tho no matter what). Luckily you guys reminded me about caffiene and it worked to a point where today I was able to use it to help with the rebound headache and not take a zomig today. Again after discussing the use of caffiene in this manner with my doctors nurse, she warned me that I would still have to wean myself off the caffiene, but it might be easier to do this since it would be easier to measure a cup of coffee. I will say you are a tropper if you are sleeping in you same room with your mate. I will not put my wife through that. My wife needs to get a good nights sleep and when I get a cluster at night I am crawling the walls, I may end up in the shower(somtimes a hot shower would feel good on my head and would make me not want to walk all over the place), I may pace the room, and well I just did not feel it was fair to keep her up all night too. Also I found if I was alone I would not complain out loud, I would try to calm myself for some odd reason, and then she would be able to get a good nights sleep in another room. This site is very good, just one thing I took from it has helped me immensely, right off the bat. David |
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Title: Re: Like to learn more about beginning of this ill Post by sevim on Apr 13th, 2006, 1:45am Before I met with my husband I took care of my dad who suffered and died from cancer, pretty much I am use to situation and I don’t find right to left my husband by him self while he suffer I can wake up with any small noise I mean I am not big help during his pain but I know sometimes give him clean hankie or make him cup of tea or massage his neck will help and sometimes after the pain we will sit down and talk for while and then go to bed again. He will beg me to go to bed but I cant I have to make sure that he is ok. For Zomig this morning he took 1 (2.5mg) because he wake up with pain but I know about rebound headaches many other medication even caffeine can cause those type of headaches. By the way we are planing to move in QLD in 6 months too much pollution in the area we are leaving now. I thought if we have small apartment with beach view clean air might little bit help. At the moment he is able to manege most of small pains with oxygen. Any advice for QLD BRIAN? |
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Title: Re: Like to learn more about beginning of this ill Post by AussieBrian on Apr 13th, 2006, 1:57am There's few places prettier than Cardwell but depending on the work you do I doubt there's room in one post to list the rest. It's a wonderful state, Queensland, and beats the pants off living in Australia. |
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Title: Re: Like to learn more about beginning of this ill Post by sevim on Apr 13th, 2006, 2:15am I am IT trainer also I am looking for full time Employment consultancy as well. I think I will have more opportunity in Brisbane but same time I like Gold coast as well [smiley=huh.gif]I am not sure I have to search for real estate and it is expensive. Might be worth it for his mental stage and the pain and for chance even if doesn’t work we can say we had long holiday now time to go back in Melbourne >:( |
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