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Title: Clusters but I can sleep? Post by 3dogmom on Oct 31st, 2004, 11:18am Hi, folks: Just been tentatively diagnosed with CH and found your site by searching. The MD and I are sort of searching through this together, seems to think I have the "ice pick" variant. Question for you guys - I am not woken up at night by these headaches, in fact, I sleep fine. But the minute I wake up in the morning, there they are. Does this happen to anybody else? I seem to fit all the other factors for diagnosing CH. Thanks for being there. |
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Title: Re: Clusters but I can sleep? Post by Kevin_M on Oct 31st, 2004, 11:32am I've experienced at the beginning of a cycle, the only one's that breakthrough are the one's when I wake up. Thereafter, about two to three weeks later, the night attacks start and then later in time they start breaking through while I am up during the day until they begin filling in the 24 hour clock. This is a slow progression perhaps but I have long episodes. Don't know how others may progress but I hope any nights one's don't start for you. Good that you have a doc that is following along with you on this. Keep watch, read about stuff here, this place will help with questions and support but your attentive doctor will be a good friend. All are valuable. Welcome, and hope your tentative assessment takes a u-turn away from this affliction. :) Kevin M |
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Title: Re: Clusters but I can sleep? Post by E-Double on Oct 31st, 2004, 11:42am on 10/31/04 at 11:18:40, 3dogmom wrote:
To my knowledge (and there are plenty of people with more ;)) "ice pick" head-aches are very responsive to indometacin. Ontop of the CH I started developing these "zaps" that would last for seconds or a minute at most.... Called the doc and tells me "not to worry about an additional diagnosis(couyld be icepicks, sunct or whatever) let's just get you relief" Point is I did a trial of Indo. and it got rid of those "zaps" I described them as mini-CH's yet for seconds. The indomethacin helped those but not the CH.... I guess you might want to describe the duration of your attacks to the doc and us for that matter b/c the different headaches respond (or don't) to different meds. If they are lasting for a relatively short time seconds or a few minutes then you might not have CH and be very thankful despite your current pain b/c it will be easier to treat. I hope you get relief!!!! Pain free wishes Eric |
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Title: Re: Clusters but I can sleep? Post by Tetris-addict on Oct 31st, 2004, 12:14pm YEP, I am lucky too Only get hit during the day/evening.... 7am, 9am, 11am, 2:30pm, 4:30pm, 7:00, 9:00 then I get to sleep like Rip Van Winkle until 7 the next morning, to fight all over again. I am sorry you have the pains, but glad you found the site. Mine last about 40 - 70 minutes.... always changes from one set of attacks to another. Are you writing in a Headache Journal? (Time, pain level, medicine, effects....?) Have you gotten your "clean MRI" yet? Everyone of us has something unique, Look at BLue Meanie's mini survey.... there are only 10 questions, but there have been more than 50 different answers so far..... Some of us smoke, some never did.... Some drink, some used to drink.... I have had these for 6 years, and was just diagnosed In August. There isn't a rhyme or reason to this, but with the support you'll find on here... we can all survive and thrive!!!!! TJ |
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Title: Re: Clusters but I can sleep? Post by don on Oct 31st, 2004, 12:19pm Quote:
Thats the ticket. Almost 100 % effective with ice picks. |
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Title: Re: Clusters but I can sleep? Post by nani on Oct 31st, 2004, 12:42pm Welcome and I'm sorry you're here. I almost never get hit at night. I'm a chronic and always wake up with a HA, but when I'm having a severe cycle the first hit will always be at the same time each morning. Keep researching and kudos to your dr for admitting he needs to search... :) |
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Title: Re: Clusters but I can sleep? Post by 3dogmom on Oct 31st, 2004, 6:45pm Thanks everybody for your kind word and advice. I was put on indocin and verapamil (since I have a hypertension piece as well) and today, knock wood, have had some pain-free time. The MRI is scheduled for two weeks from now. I've waited two weeks already, it's a good thing I'm not bleeding to death. Do all of you see a neurologist, or is it okay that I'm seeing my regular guy as long as he stays on top of thing? I had not thought of keeping a headache journal. That is a really great idea as I I wouldn't be able to tell patterns otherwise. Thanks for the welcome and good wishes to all of you. |
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Title: Re: Clusters but I can sleep? Post by BobG on Oct 31st, 2004, 7:39pm 3dogmom, welcome. You say you have taken Indomethacin and now have some pain free time. IMHO that would indicate that you probably have Chronic Paroxysmal Hemicrania, aka CPH. Here’s a link to a comparison table of headache types. http://www.clusterheadaches.org/comparison_table.htm I don’t know for sure but I’d say about half of us see a neurologist and half don’t. If your regular guy is knowledgable, or willing to learn and not play God, about cluster and/or CPH and be open to suggestions on your treatment then I’d say stay with him. If you have good insurance then a trip to a neurologist might be a good idea. What the heck, a $10 co-pay might be well worth it. Hey Tetris-addict/TJ Just out of curiosity I checked out your Rutherford web site. It gave me a big giggle. ;;D Quote:
Not giggling at you, just that description made me smile and giggle. I’ve never thought of someone actually making jig shoes. But, I guess someone has to do it. I’ve seen River Dance and Lord of the Dance and was amazed at the talent it takes for so many people to move in synch like that. |
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Title: Re: Clusters but I can sleep? Post by don on Oct 31st, 2004, 10:03pm NEHC has produced one of the best headache diaries I have come across. Its easy for the sufferer to use and provides a lot of info for a Doc to work with. Im my opinion if you have a Doc that is willing to work with you, is aggresive and flexible, then there is no need for a neuro. The diary can be found here: http://www.headachenech.com/patients/NECH_Calendar.doc |
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Title: Re: Clusters but I can sleep? Post by thebbz on Nov 1st, 2004, 8:05pm Hello and welcome, I have had the beast show up at night many times. Then I have had episodes where I didn't. My own obsevations indicate anytime anywhere with or without cause. The beast will get ya whenever, no matter what . We all are a bit different, the ones that nail ya at night seem to always be on the top of the kip scale though. Stay tough. BB |
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Title: Re: Clusters but I can sleep? Post by sandie99 on Nov 3rd, 2004, 1:10am Hmm... I usually sleep my nights nicely although I am a chronic. But tell you what, CH does bother me before I go to sleep and it's the first thing to greet me in the morning very often! I am sorry to hear that you have to suffer from CH but I am glad that you found CH.com. Welcome! :) Best wishes & PFdays, sandie99 |
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Title: Re: Clusters but I can sleep? Post by angel-ache on Nov 3rd, 2004, 6:58pm Hello, and welcome to a world of support. I too only suffer every morning and about everyother evening. I have had 4 days pain free in a row and I thank verapamil. I also am thinking that I might be finishing my cycle. Ask away, Angela |
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Title: Re: Clusters but I can sleep? Post by kcorrigan on Nov 3rd, 2004, 9:23pm I am another that doesn't get disturbed at night. I do get them every morning within 2 hours of waking up. They last around 45 minutes to an hour and are up to about 3 hours now (on day 33!). Angela, glad to hear that you're toward the end of your cycle. Be careful, I thought that I was too and here I sit getting ready to have the DR fill out paperwork for the FMLA so that I can get a leave of absence from work. I have an MRI and an EEG scheduled, but am hoping that the Depakote and anti-histamine that he put me on yesterday has some effect. At any rate.... No, you are not alone. The one thing that is for sure with CH is that everyone suffers something slightly different, but all the same pain. Good luck to you. Many PF days/nights to you in the future. ~K |
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