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Title: Signs of a cycle beginning ... need help Post by TIM_IN_TEXAS on Jan 2nd, 2003, 10:10am This is my first post and it is unfortunate to know there are so many us out there but great to know i can communicate with people on the same level. I have been through a very stressful time in my life. After 20 years in the same location I lost my lease on my very established retail business and had to rebuild in a new location. The normal construction time to build this business is about 4 months but in order to maintain my clientel it was essential that there was minimal downtime. I worked dillegently and the project was compleated in 22 days with only 7days of down time. Unfortunately at a very substancial financial cost to me. Opened new location Dec. 7. Quite an overachievement even in our small world of overachievers. Things quickly returned to normal on the business standpointe but the home situation had taken its toll on everyone with such a high level of anxiety , a wife who works 12 hour night shifts and a household that includes 4 children ages 15(from my first marriage) and our children together ages 6,4, and 2. Christmas Day my wife dropped the bomb on me that she was moving out and taking the kids with her. She claims I am to hard to live with and that i am always stressed, angry and on edge. (NO SNIKEY) . My history of ch was finally diagnosed 10 years ago. The regularity of episodes is about every 2 years, the duration of the cycle lasts 6 weeks, the frequency of the attachs reaches a high pointe of 8 a day . Just like clockwork, first one at the same time everyday and progressing to the 8 a day and then back down the roller coaster until they finally go back to where they came from. Here is my situation, I get what I call precursors that indicate to me that I am going to begin a cycle, my left eye pupil begins to pinpointe before any pain begins about a week before the actual cycle I pay attention to this because if I get my second precursor, severe pain in my left upper gum which I gain some strange relief of by piercing with a round toothpick or cutting into my gums in the same spot with dental floss , it means all hell is about to break out. My last cycle began last January 3rd, 2002 and lasted until Feb. 11,2002.It seems that the cycle was broken with adose of migranal nasal spray spaced apart at 8 hours x 3 doses in addition I took reglan for the nausea associated with the migranal. I have over the years been on a series of medications to try to break the cycle these include but are not limited to( you kinda start forgetting after a couple weeks of sleep deprivation) immiprimine, verapamil deltasone lithium, welbutrin, immitrex, and so on andso on and so on. Since my last cycle a year ago I was also pescribed paxil for anxiety (my wife says it was for anger) but ook myself off of it because I was tired of being tired all the time. I started taking it again 2 days ago as I felt that in some way this may be adding to the triggering of this cycle. Now with some long-winded background I will gt to the point I have 2 doses of migranal remaining from the last series do I take them? Do any of you out there have precursors that let you know the beaste is coming? If so , can you stop him before he gets there. I sure would appriciate any insight, personal experiences, and prayers. Sincerly, TIM IN TEXAS |
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Title: Re: Signs of a cycle beginning ... need help Post by catlind on Jan 2nd, 2003, 10:25am Tim, Welcome aboard, sorry you had to find us, but at least you've found the best group of people around to help support you through your cycles. I noticed in your list of medications the absence of O2. Get yourself some O2 ASAP at 8-12lpm min. with a non-rebreather mask. Then click the buttons on the left, and read, read, read and read some more. You will find more information on this site, and more helpful hints than you will anywhere else, including your neuro's office. (Which if you haven't seen one you may want to find one). Sorry to hear about the rest of your life being in a bad way, but try to stay positive and remember that CH doesn't make one's life go bad, we have to be vigilant against letting this beast make us feel sorry for ourselves and have a pity party. That doesn't mean we aren't sympathetic to your situation, just that it's best if you don't let it become your focus. AGain, welcome aboard, grab an oar and start rowin. Cat |
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Title: Re: Signs of a cycle beginning ... need help Post by KingOfPain on Jan 2nd, 2003, 10:26am Have you tried oxygen? Good luck. KOP |
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Title: Re: Signs of a cycle beginning ... need help Post by fubar on Jan 2nd, 2003, 10:35am Speaking as a former skeptic.... If you haven't tried Oxygen, get thee to a doctor who will prescribe it for you. I was not ready to believe that something as simple as Oxygen could give me relief when hardcore narcotics couldn't even begin to touch this pain. It is stranger than fiction, but it does help and it does drastically reduce/shorten the pain level/duration. It's a life saver, and certainly helps reduce the anxiety that comes with knowing your going to have an attack. There isn't much of anything as stressful as the waiting for the attack, knowing what intense pain you are going to have to endure. Knowing that you have Oxygen at the ready helps a lot. -Fu -Fu |
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Title: Re: Signs of a cycle beginning ... need help Post by Roxy on Jan 2nd, 2003, 1:31pm Welcome! :) Nice to see another face from Texas, but hate that you had to find us. I agree with everyone else...get thee to the O2 tank...quickly. It will help. I got my first shot of it two day ago...and it was amazing. Family said I hadn't had a grin on my face like that for a long time. Sorry everything in your life is screwed up right now, but maybe if you can get some O2 to help you, everything might look a little brighter. When you can even partially control these things, it really helps your outlook on life. Anything I can help you with...just let me know. Roxy |
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Title: Re: Signs of a cycle beginning ... need help Post by ZAIRA on Jan 2nd, 2003, 1:55pm Hey Tim, Welcome to the Cluster Ville! I am sorry to read the beast is here. Be strong and remember that as long as we keep working through OUCH, we will win this fight. You are not alone, Good luck from Italy Zaira |
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Title: Re: Signs of a cycle beginning ... need help Post by Slammy on Jan 2nd, 2003, 5:13pm on 01/02/03 at 10:10:21, TIM_IN_TEXAS wrote:
Wow! Here's hoping that 2003 is better for you. I get precursors, as you call them, prior to any start of a cycle. But mine is usually a tightness in the base of my skull... I've never taken Migranal, so I can't help you there. I usually start on Verapamil as soon as I feel the tightness from a preventative point, but I don't take any abortives until I feel an attack is iminent...don't want to waste them.... but I strongly recommend the oxygen... it's been a life-saver for me. good luck, Slammy 8) |
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Title: Re: Signs of a cycle beginning ... need help Post by TIM_IN_TEXAS on Jan 2nd, 2003, 8:06pm hey this is TIM IN TEXAS again, thanks for all the input so far. I failed to mention that during my last cycle of headaches I did use O2 but did not use rebreather mask. I will hopefully get a script for the O2 tommorow as i did notice some relief last time maybe i will have even better results with the rebreather mask. I used only a standard mask with the vents in it. My wife said she will bring one home from the hospital for me. :-[ My intentions to give out a deep profile is not to gain sympathy for my personal wrinkles in life but to express that sudden change in routine, changes in sleep patterns, and the like are definitely contributers to this onset of clusters. Also do any of you ch sufferers out there find that prior to an onset of a cycle that your sleep or dreams seem to be even more stressful than your waking hours. and finally I have not seen any reply as of yet as to a preventive measure to stop the cycle before it begins any input would be appreciated., even if the answer is there isnt one. :-[ thanks, TIM IN TEXAS |
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Title: Re: Signs of a cycle beginning ... need help Post by cootie on Jan 2nd, 2003, 8:13pm Hi Tim.....I've heard alot of good with the oxygen deal....hope things start goin better for ya......seems we all have stories of fall'in on hard times....as suffers and supporters both.....sum alot more then others...... and this is a good place for us all to talk thru it and find freinds......Pam |
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Title: Re: Signs of a cycle beginning ... need help Post by jonny on Jan 2nd, 2003, 8:18pm Prevenitive to try is Verapamil. You want a NON- rebreather mask not a rebreather. If the Verap fails mix it with Lithium. .......................jonny |
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Title: Re: Signs of a cycle beginning ... need help Post by cecile on Jan 2nd, 2003, 8:29pm i hope 2003 will be better for you and i am agree with the other : try O2 http://URL cécile |
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Title: Re: Signs of a cycle beginning ... need help Post by RevDeFord on Jan 2nd, 2003, 8:36pm As all have said, O2 is the key. I will add that I will pray for you, your marriage, your business, and your sanity. You have found friends here.....don't be afraid to vent. |
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Title: Re: Signs of a cycle beginning ... need help Post by catlind on Jan 2nd, 2003, 9:19pm Tim, Yup, I notice my dreams and sleep time is seriously affected prior to a cycle starting. I have sleep apnea and actually spend very little time in REM sleep (I'm one of those medical anomalies that Dr's refer to as "interesting"...that's a bad thing in case you're wondering) and I do get precursor indications as you call them. My hubby can tell before I can that I'm about to go into cycle, there are subtle changes in my personality that I'm not aware of, probably as a result of less restful sleep. The oxygen will save you big time during cycle and jonny and Ueli are the two biggest Guru's I know on the board, not much they can't tell you about how to use it, and if they tell you make sure you do as they say. Yes, I find a cycle can be brought on out of normal pattern by unusual or stressful circumstances that are out of the normal stress of my life, but not pressure type stress. i.e. My Dad dying did not trigger a cycle. Having a baby did (but apparently that's normal because of the whole pituitary gland enlarging and pushing CSF (which I have) up against the hypothalamus) as well as the change in sleep and circadian rhythms. If I'm in cycle, a fight with my hubby will trigger a CH, but not a cycle if I'm not in one. My best indicator of an oncoming attack during a cycle is nasal congestion, within 20 min. of nasal congestion on my CH side, I'll usually get hit. So far, I have not been able to abort a cycle starting when I know one is coming. My preventative is fairly effective but I get breakthrough headaches with it. The consensus seems to be for the verapamil as a preventative. Hope that answers some of your questions. Didn't mean to sound harsh about your life situation, I do sympathize with you, I just know it's easy to fall into a bad state that will make your CH worse if you aren't careful. But that's what we are here for, to make sure you don't do that and to help you through this :) Cat |
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Title: Re: Signs of a cycle beginning ... need help Post by Charlie on Jan 2nd, 2003, 11:12pm Welcome Tim and stick around. If you do, you will find things here of value and ways to mitigate this horror. For friends, employers, and family, here is Simon's letter that gives the best description of CH that I've seen. It's worth printing. Good luck, http://www.ouch-uk.org/ch/note_colleagues.cfm Charlie |
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