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Title: Hello Supporters.... Post by Jayne S. on Mar 26th, 2002, 3:35am Hi, everyone. I'm new to this sight but not new to the CH. My husband has been suffering for 13yrs. We've been together 10yrs. I've seen it all. The pacing, the crying, the torture, that the cluster is doing to him. We have three beautiful children. The last which was born just in Nov. He absolutely adores them but during the cycle can hardly care for them. I'm so tired. I sit back helplessly , knowing theres not a damn thing I can do. I try and help though as much as I can. Sometimes its a hug or a neck rub, or sometimes its just staying away. It's a fight he has to do alone. I feel helpless wishing I could do more. I just pray for the end of the cycle. For life to be back to normal. Normal whats normal. I hate these headaches. Thank you for this sight. It helps to vent a little... Jayne.S :( |
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Title: Re: Hello Supporters.... Post by Donna on Mar 26th, 2002, 4:56pm Hi and Welcome Jayne: We supporters all know that what we can do to help is so very limited, and how frustrating playing second fiddle to the Beast can be when we want to fight so badly for our loved one. Venting really does help. We need this relief valve. That's why we are so thankful for this site. There's so much info and so much research has been done by our members compared to what was available before this site. Read as much as you can of the material available via the buttons in the upper left margin. Visit OUCH and check out the Family Services Team. It's all about support and you can reach the members of the team there thru clusterbuds@hotmail.com. |
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Title: Re: Hello Supporters.... Post by Jayne S. on Mar 26th, 2002, 5:03pm Hey Donna, thanx so much for your support. It's so hard seeing him go through this again and again and again. But knowing all you guys are out there sufferers and supporters makes him and I feel so much better. This site has sooooo much info what a godsent. thanx again.... Jayne S. :) |
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Title: Re: Hello Supporters.... Post by Donna on Mar 26th, 2002, 5:30pm Jayne--------- Why don't you tell us a little about what's going on right now? Is he in cycle? What does he use for prevention and to abort headaches? Anything else you care to include? How are you coping? Wish there was something we could do to help, but we are almost always here with a shoulder............. |
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Title: Re: Hello Supporters.... Post by TimandLaurie on Mar 26th, 2002, 7:59pm Hi Jayne, Please do not feel alone because you are not. My husband starting having clusters in Oct. 2000 and our two children have gone through it right with him. We spent Christmas eve in the ER in 2000 and had to hurry home to put presents under the tree. We went through 4 doctors before finding just a headache doctor here in St. Louis. Tim is finally feeling better and the headaches are much more controlled now than they have ever been. But it has been a long road getting to this point. A lot of money wasted on meds that are sitting in a shoe box and we are finding that some of them he tried over a year ago are reappearing and working with the combination of other meds. I can tell you that being honest with each other and the children is very important. We make sure that we take our pills and shots wherever we go because you never know when it might strike. I have become quite educated in meds, shots, note taking, etc. We should be paid great wages to stay home and manage all of these things because its important to understand how this med effects him and whether or not its working. We hound the nurse at the doctors office until we get results and will continue to do so to maintain control of our lives. A good cry every now and then we are all entitled to and it helps you regroup your thoughts and focus on what most important - your family! Keep your chin up and write to us if would like to talk more. I would be glad to share the ups and downs with someone like me. God bless, Laurie |
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Title: Re: Hello Supporters.... Post by Jayne S. on Mar 26th, 2002, 10:08pm Hi Donna, well to start off Tim is a newbie too. He goes by Timo. He use to pop aspirin like 6 or 7 at a time. til he went to the neurologist. He was put on Verapamil, Stadol, and Prednisone. I'm not sure exactly the doses. It seemed to work but every cycle seems to be getting worse. His meds now are Prednisone and Stadol nasal spray. He has now just weaned himself off the Prednisone, and his doctor finally gave him the Imitrex inj. His dose only alows him to take it twice in 24 hrs. So he uses the Stadol nasal spray in between. I think he's overusing. I'm scared. He was on Depakote but stopped taking it. Now he's back on Verapamil. He's having a bad CH right now. Thank God the kids are in bed . He's getting them so frequently. It's horrible. I want to take him to the ER. He won't go. Seems to begetting worse i better go . Thanks Donna for your concern...Jayne S. |
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Title: Re: Hello Supporters.... Post by Jayne S. on Mar 26th, 2002, 10:48pm Hi Laurie. Thanks so much for writing me. My husband is also Tim. He just had a real bad CH. He seems to be doing a little better. He took a Stadol hit. Seems to have calmed him down. I met my husband in1992 he started getting them in 88. He's had it twice where they went away for a year or two. Then other times once or twice a year . For periods from one month upto three or four months. He's seems to do alot of seaching . Trying to find the trigger. He stopped drinking, smoking, no sodium nitrate, no animals, weather?, barometer?, to no avail. It's so hard. We are all so tired. Waiting patiently for this to pass. I hope real soon for his sake. He is a 6 ft. 2 in., 250lb. man but during a CH he is redused to a helpless child. Well anyway thanks for your response. I'll be praying for your Tim and mine. Hoping for a cure. Maybe that sounds crazy but you never know. Talk to you soon. Jayne S. :) |
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Title: Re: Hello Supporters.... Post by Donna on Mar 27th, 2002, 9:38am Jayne..........You should both be sure to read what we have to offer in info on oxygen. Also the mushroom therapy. Just go to the "search" button. Then post questions. You'll get a lot of answers. By the way, find out what dosage the Verap. was. Seems most docs prescribe way too little. Also seems that 480mg is the popular dosage for ch. Some even go a lot higher. |
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Title: Re: Hello Supporters.... Post by TimandLaurie on Mar 27th, 2002, 6:52pm Hi Jayne, Tim has oxygen here at home to use as needed. He has Imitrex injections to use as needed but no more than 3 shots per day. He also takes 480mg of verapamil at breakfast and dinner, 300mg of lithium at bedtime, and 1 bellergal-s tab at bedtime on a daily basis. This combination has been the best yet. They tried Tim on Lithium about 45 days ago for 30 days then took him off because of the blood work required for staying on it more then 30 days at a time. We quickly discovered that this combination was working because the clusters came back in a matter of days. So before they got out of control we called the doctor and told him to put Tim back on it. It works!!! I would consider asking the doctor about the other two meds in combination with the Verapamil and give it about 10 days to get into his system before he really starts noticing a change in his headaches. Keep in touch. Our prayers are with you all. Tim advises Tim to get away from the Stadol - nasty stuff. Talk to you soon. Tim and Laurie |
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Title: Re: Hello Supporters.... Post by penijim on Mar 27th, 2002, 8:54pm Hi Laurie,I have been almost exactly where you are now, How I started was I printed everything I could find on this site and made a folder to take to the Doctor,even other members recommendations on dosage of meds,Our Doctor new very little about cluster headaches and was willing to learn all he could.It seems as though Doctors need to read print .They can validate it if its on paper.I know how hard it is for you, and how lonely you can get.The people on this website have saved our lives,Really!Stay with us.Peni |
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Title: Re: Hello Supporters.... Post by penijim on Mar 27th, 2002, 8:57pm Sorry I posted your name wrong, I can't get my screen bigh enough to read every line at the same time ,peni |
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