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Title: Unpredictable pain... Post by Drained on Mar 2nd, 2006, 9:25pm I have been having clusters for appox. 3 weeks now. The last occurence was 5+ years ago. My first bout lasted a week, I thought I was going to die. Wished I would at 1 point. I have a history of migraines, tension headaches, etc... so I am no stranger to pain. But this was definately different! When I had suffered through two nights, I finally went to the hospital where the doctor prescribed me some nasal spray that was supposed to eliminate the pain. It worked for 5 minutes and never again. Of course I went on the internet to see the traits and determined that they were clusters, but they were not normally common in women. Naturally I also now thought I was a freak as I am female. After reading more recent literature I realize I am not alone and feel much better knowing that. These clusters are bad, no nightmarish. They mostly occur at random hours throughout the night lasting about a half hour to start, now lasting up to two and a half hours. Trigger unknown (This morning was the worst yet) I finally went to the hospital as it is now affecting my work (Lack of sleep I thought I could handle, having attacks at work...not a chance). The doctor gave me three steroid pills while I was there and said if they didn't help to come tomorrow as he had some other pills to try. He also prescribed amitryptilene to help me sleep and some heavy painkillers. So far so good. However sleeptime will come soon, and I am dreading it. I have read several stories on this site this evening and have wept for all of you. I can relate :-[ to the pain and suffering and it is no joke. It is impossible to explain to anyone the torment unless they have experienced it for themselves. I am praying that they will end soon, but I feel they will not. I start to cry every time I feel the right side of my head start to heat up, my right nostril start to leak and my eye starting to swell as I know what is coming in the next couple minutes (Hell). I feel sorry for my husband...he trys to help but knows it is impossible. I am grateful for finding this webite to share my story as I know everyone here understands. Thank-you,[img][/img] Drained[/color] |
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Title: Re: Unpredictable pain... Post by Richr8 on Mar 2nd, 2006, 9:34pm My standard intro: Sorry you had to find us, but glad that you did. It looks like you have much reading to do with all of the tips and links provided although no one has reported any universal miracle cures, maybe one of the newer regimens will work for you. Despite the health risks associated with it, Prednisone tapers have reduced my cycles to several weeks from 12 weeks. I use O2 as an abortive and Verapamil as a preventive with 6mg of Melatonin to help with the sleeplessness brought on by the beast and the Prednisone. Anyway, dig in, start reading and ask all the questions you want. There are lots of great folks here who know exactly what you are going through and will help in any way they can. Rich |
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Title: Re: Unpredictable pain... Post by Drained on Mar 2nd, 2006, 10:54pm Hi Rich- Do you find when you use 02 it actually gets rid of the symptoms temporarily? Thanks, Erika |
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Title: Re: Unpredictable pain... Post by Guiseppi on Mar 2nd, 2006, 11:30pm 02 works only at full concentration. Many use the clustermax, I use a demand regulator, similar to a divers set up. Read up on the oxygen link because used incorrectly it can be almost useless. Many people have had good luck using it as a first string abortive. You start the oxygen at the first sign of the headche. For me it aborts 80 percent of them. I have to take cafergot when I start the oxygen or the headache comes back in about 20-30 minutes. Many don't have that problem. You'll probably get some short term relief from the steroid but long term usage can cause you some problems. I use 1200 mg lithium daily when I'm on cycle, then oxygen and the cafergot when one breaks through. Reading your first post broke my heart, really hoping you find something that helps you. Guiseppi |
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Title: Re: Unpredictable pain... Post by Drained on Mar 2nd, 2006, 11:44pm Thanks so much for your reply Guiseppi. I think I will try the 02 next if these new alternatives don't do the trick. I know I can't deal with these for much longer. I can't imagine having only a 14 day break between cycles like other sufferers, that's insane! I guess when you don't have a choice, you do what you can. I'm so glad you have found something to work for you as it is a terrible thing to suffer through. I really appreciate your advice and support. Thank-you, Erika ;) |
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Title: Re: Unpredictable pain... Post by Bob_Johnson on Mar 3rd, 2006, 10:19am Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002) http://www.brightok.net/~mnjday/chtherapy.pdf |
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Title: Re: Unpredictable pain... Post by Dragnlance on Mar 3rd, 2006, 10:34am Hello Drained, and Welcome home. I use an herb called Kudzu with great success. Used as a preventive, it helps reduce the number, intensity and duration of the hits. Like everything, it does not work so well with every one. Sometimes if you slam a can of RedBull, it can abort a hit. Universally O2 is considered the best abortive, if used correctly. Hope this helps, and again welcome, and sorry you are hurting!! Just know, you are no longer alone!!! Dragnlance |
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Title: Re: Unpredictable pain... Post by Drained on Mar 5th, 2006, 10:28pm Just wanted to say thank-you to everyone for the advice. Had a rough last few days, so I have not been on the computer much. I am printing off the suggestions for the doctor. Maybe something will help. Never tried Redbull, but I'm up for anything right now. I am also going to look into Kudzu tomorrow and see what I can find. Back to work tomorrow, hope I can sleep. Sleep well everyone, and thanks again. Erika |
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Title: Re: Unpredictable pain... Post by marlinsfan on Mar 6th, 2006, 8:47am Hi Erika, Read bob's doc, it has great info. Guiseppi's advice is good too. Lots of good info here, so read on. O2 does work great for me. I use a hi-flow regulator and a non-rebreather mask. You can buy the best mask here: http://www.clustermasx.com One more thing you need to do is watch what you eat. Many of us here have found that certain foods and drinks will trigger a headache. Alcohol is a certain trigger for the majority of us, but many have other. Some of mine are:nuts, chocolate, equal (aspartame), tomatoes, Orange juice, and of course, sleep! Stick around. |
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Title: Re: Unpredictable pain... Post by Drained on Mar 12th, 2006, 10:19pm :D Marlinsfan- I think I will be looking into O2 this week as I have been doing a lot of reading up on medications this past week. I have been in and out of the hospital and clinic alot this past week, not to mention missing work. They have prescribed me Cafergot this time which I took at the beginning of my third attack last night. (Was afraid to try it before) It seems to have worked. Not sure how long that will last for. I am hoping it will work tonight as well...if needed. Thanks for the trigger info, I drink a diet Pepsi everyday at work so I will quit that and see if it helps. Sleep well, Erika |
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