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Title: Available for adoption Post by mcashes on Mar 4th, 2008, 12:03pm Hi, I'm so greatful to have found this site, where fellow sufferers have gathered, I feared I was alone in this thing. This is my story: I'm a father of 3 sons (21, 16, & 13) married to a wonderful & supportive women (25 yrs in May), and 6 days short of 48 years of age. I first began experiencing CH 8 or 9 years ago, and simply could not believe that suddenly, at about the age of 40, I had developed an allergy to beer! What a curse, about 90 min after consuming my favorite post work beverage I was struck by a headache that was one-sided (left-side) and required me to march about the neighborhood! The only good thing about it was that after a BC powder and a 30 to 60 min march the awful thing was gone and I was back to normal. At other times, I wouldn't get the headaches, strange I thought. Well, time passes and I would have PF seasons (6 to 18 months in duration) followed by periods of CH although I could deal with them (asprin and what I called a "battle march" ). The PF seasons got progressively shorter and for the last two years or so, I get maybe 3 or 4 PF months between clusters. Likewise, the intensity of headaches have increased to the point of being unbearable. I worked with my GP seeking some kind of relief, at first he thought it was some kind of migraine. Also about 2 yrs. ago my wife found an article about cluster headaches and brought it to my attention and I thought "this sounds exactly like what I'm experiencing". I suggested CH to my GP but he said that those were really rare and de doubted that I really could be suffering from it (you know, being a simple southern boy and all... we don't get those fancy medical problems ya know). Anyway, after a few feeble attempts by my GP, which were useless, he told me that if I wanted to take it to the next level I needed to see a neurologist, I asked for a referral. I first saw a neurologist last October, she put me on a steriod to break the cycle in was in (the 7, 6, 5, 4, 3, 2, 1 thing). It worked! She also cut me off of all over-the-counter headache pills and put me on MaxAlt (10 mg tabs) for abortative. Topomax (25 mg) two at bedtime for preventative. Things went fairly well between then (October 07) and late January 08, so long as I avoided known triggers (beer, fudge, mixed salted nuts, & MSG's, there are others on the "suspected list" but I haven't been able to confirm them). The current cycle started 30 Jan on a buisness trip (I didn't have my MaxAlt with me) and I'm on day 45 now (with no sign of relief). On day 16 I saw the neuro again, did the steroid pack, it didn't break the cycle, she also made a firm diagnosis at that visit, and increased my topomax to three a day (75 mg total, one at daybreak & 2 at bedtime). I also learned that she was leaving the area and that I would have to find another neurologist. On day 21 I was hit with a CH that sent me to the ER (I thought I would die) and was introduced to pure O2 and Lidocaine nasial spray. I intend to ask my new neuro for a perscription for both of these at my next appointment (10 March). I've been traveling a lot with my job lately (I'm a Coastal Engineer that performs research for the US Government) and it seems to make my CH worse. In particular, I traveled to the middle east (Dubai) 21-29 Feb, and something happened during this trip that has caused my CH to explode geometrically. Insted of my typical one CH occuring about 90 min after I settle down for the day, I am now getting hit approximately every 6 hours. It's killing me and I'm having a very difficult time coping with it. While in Dubai I had two more that were of the same intensity of the one that sent me to the ER but of course could not do that (go to the ER) there, just pounded the floor of the finest hotel room I've ever been in for hours, cried, moaned, and prayed to my maker for one of two things (stop the pain or stop my heartbeat, I didn't care which). Though painful I've made it back home now and am happy to report that one can, in fact, survive a CH (in fact two hits) while on a transatlantic flight. Not pleasant, and some observant passengers were less than comfortable after detecting the anguish on my face and in my eyes. Now my questions. Is there something about flying & and CH I need to know about? What is known about the influence of Jet-Lag and CH? Traveling 10 time zones away for 8 days has really changed things for the worse, by a factor of at least 4? Is there an end to the weight loss associated with taking Topomax? Starting at 185 lb in Oct, I'm standing today at 152 lb. This has those that love me very concerned (cancer runs in the family, lost my baby brother to it in 2001 at the young age of 39) and they all think there is "another" unidentified problem. I'm not convinced. Did I do this to myself (mis-spent youth and young adult life)? I've got a million other questions but this note is too long already and I'll ask those later. In closing, I just want to say that if it weren't for my faith and family I would not be here to find this site and I am so very thankful to have found you. Don't panic, I'm over all that now, there was a time that I was suicidal but I've come to terms with it and I WILL NOT take myself out of the game. At the same time, I have no problem with the headcoach calling me to the bench anytime he wants, there's someone there I want to talk with anyway. You describe yourselves as a family which is great because I'm feeling like an orphan right now. I'm available for adoption if anyone out there is interested in caring for someone that is little more that a small pile of ashes, breath lightly, I'm easily scattered. Mark |
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Title: Re: Available for adoption Post by DennisM1045 on Mar 4th, 2008, 12:26pm Welcome home brother Mark! I'm glad you finally found your way here. It's horrible that you had to. Your story is very familiar. Too familiar. I turn 48 too in September 8) 1st, you didn't bring this on yourself. You're not suffering in pergatory here on earth for some past transgretion. The beast doesn't care who you are or how good you've been. I get hit when traveling too. Typically within an hour of landing. I use Frovatriptan, a long lasting triptan to prevent those. You need to take it about 3 hours before you land. Also, you can't mix this triptan with any other triptan within 24 hours. Fortunately it lasts at least 12 hours. Sleep disruption is a major trigger for me too. If I'm up all night for a few nights with sick kids I'm guaranteed to get slammed. However I haven't done any significant time zone travel when in cycle though so I don't have much to offer on that front. Others will be along on the Topomax front. Though that amount of weight loss should be checked out with a Doctor. Unless you were only 4' tall and obese. In that case you could still stand to loose a few ;;D So now that you are here you will hear a lot about Oxygen. It's been a savior for me. Between O2 and Imitrex injections I don't suffer major hits for more than a half hour at the worst. Most times I can abort a hit in 15 minutes or less. Here is some great O2 info at OUCH-US: http://www.ouch-us.org/medications/oxygen/o2info.shtml Here are two documents that lay out the latest in treatment: http://www.plainboard.com/ch/chtherapy.pdf http://www.efns.org/files/guideline_49.pdf This should give you enough to chew on. In the mean time, fire away with your questions. We're here to answer them. You've got shoulders to cry on and boots to kick you in the ass as needed. -Dennis- |
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Title: Re: Available for adoption Post by Guiseppi on Mar 4th, 2008, 12:45pm Welcome home brudder, can't adopt you we're too close in age. I turn 48 in 25 days! But I'll talk to pops about adopting you so we can be brothers! Our stories are painfully similar, I got lucky and was diagnosed early on. Beer and sleep cycle disruptions are MAJOR triggers for me too. Talk to your neuro about imitrex injectables. I take them on the airplane with me. TSA guys have checked them a couple of times and have no problem letting me fly with them. They are expensive, and I hate the "snakes up the back" feeling they give me, but as close to instant relief as there is when my oxygen isn't handy. Yeah, oxygen. You'll hear that alot on the board. Pure oxygen, through a non re breather mask, at a high flow rate, at least 15 LPM, should be your first line abortive strategy. You have much reading to do my friend.....I mean brudder!!!...the good news is you will never be alone again! ;) Guiseppi |
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Title: Re: Available for adoption Post by Linda_Howell on Mar 4th, 2008, 12:56pm Quote:
ABSOLUTELY NOT. As near as the scientists can tell, these headaches are caused by a wacked Hypothalmus and not something that you can "DO" to yourself. I already have 7 children so I'm not really in the market to adopt anymore...but I''ll be your friend? :-* Welcome to your OTHER home. Linda |
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Title: Re: Available for adoption Post by Grandma_Sweet_Boy on Mar 4th, 2008, 1:27pm Well, I'm old enought to adopt you but smart enough to know that I've already got enough kids! ;;D Welcome to this crazy, dysfunctional, loving family of ours. You will find an ear to listen, a shoulder to lean on, many words of wisdom and compassion, and a ton of helpful information. Carol |
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Title: Re: Available for adoption Post by Superdave on Mar 4th, 2008, 1:56pm Welcome Mark, I will adopt you if you have enough money to support me in my old age, or better yet now, other wise I guess we'll have to be brudders in pain 8) Take your shoes off and get comfortable, all you ever wanted to know about your headache is right here. Feel free to tell us your stories trials, failures and victories in the battle against the beast. You'll be able to teach your neuro everthing he needs to know about ch in no time flat. I'm 45 and have had chronic ch since I was 40 took me 5 yrs. to get diagnosed. I found this site about a month ago and these people really know how to help :) Its a great place to be in a bad time 8) Superdave |
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Title: Re: Available for adoption Post by thebbz on Mar 4th, 2008, 2:09pm Peace Brother. all the best thebb 8) |
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Title: Re: Available for adoption Post by mcashes on Mar 4th, 2008, 6:04pm Okay, thanks for all the warm welcomes and the great links. I've been reading all day and have learned more about this thing and how to beat it back than I have in the past 9 years. You all are the greatest! My wife tells me I need to apologize for my poor spelling and she's probably right (she usually is), also the missing words and such. Sorry about that. Missing words, my brain gets ahead of my fingers and when I re-read my post, it (my brain) inserts the missing words automatically. Spelling, yes, it's Topamax not that other thing I made up. In the future, if you can't figure out some mystery word I've written, just sound it out using a southeastern Louisiana accent. You see, I was taught to read and write under a program called phonics and as a result believe every word should be spelled the way it sounds. The accent makes my spelling even more atrocious. It's good to be among folks that can relate to what I'm dealing with and who are also so willing to help out. By the way, adoption probably wasn't the right word. I'm really looking more for shelter and I'm finding it already. Thanks. Mark |
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Title: Re: Available for adoption Post by Superdave on Mar 4th, 2008, 7:32pm Mark, Southeastern Louisiana is spelled "coon ass" At least thats how we spell it in Texas ;;D Doesn't it feel great to have all of this information and understanding available suddenly after so many years of suffering in the dark about this condition. Since I've joined this board it seems that every day another ch'er walks through the door just delighted to find this place the same way I did. PF vibes to Southeastern Louisiana 8) |
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Title: Re: Available for adoption Post by RichardN on Mar 4th, 2008, 8:15pm Hi Mark & Welcome to Clusterville Are you working on the Dubai "Palm Islands" perhaps? . . . . amazing engineering. If you are working around heavy construction, beware exhaust fumes . . . besides alcohol, major trigger for me. Another vote for 02 here. I can't use triptans (like Imitrex) due to some artery blockage and high cholesterol . . . so 02 is my only abortive . . . can usually kill him in minutes if used early-on in the attack. Should be your FIRST-line abortive . . . works for 70%+ to abort most attacks. Don't discount water therapy (see "water X 3" . . .link on left) . . . I'm convinced this has helped me reduce the frequency/intensity of attacks. Keep reading . . . keep asking. The answers you will get here come from folks who truly know your pain. Be Safe, PFDANs Richard |
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Title: Re: Available for adoption Post by kevmd on Mar 4th, 2008, 8:53pm 02, 02, 02, 02, 02, 02...did I mention 02. Don't delay in getting it. I just started using it recently and it is a frigin life saver. Imitrex works great too! |
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Title: Re: Available for adoption Post by darknight on Mar 5th, 2008, 5:34am Hi and PF wishes to you!! As Kev says 02 02 02 ive just started it and its helped me gain control and by the looks of things Kev to, hope it helps you gain control!! take care ;) |
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Title: Re: Available for adoption Post by LeLimey on Mar 5th, 2008, 5:44am Hi Mark I just wanted to add my welcome to the pot and to say your wife is more than welcome to come along and post too - we value supporters highly here and she will be warmly welcomed. There is as much support for her in dealing with this as for you. As for the adoption thingummydoodah - excellent! I need a big brother. One who can mow lawns and fix car's and dishwashers is a bonus too and I'm really looking forward to you meeting your new nieces and nephews.. I'm just off to work on your babysitting rota now ;) Hang in there, you've found a second home here Helen |
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Title: Re: Available for adoption Post by BarbaraD on Mar 5th, 2008, 7:29am Ok kid, I'm in East Texas (Red Hill to be exact) - I'll take you in - how are you at farm chores? And my late husband was an engineer so I'm familar with the quirks that go with the trade - weird! ;) As to the flying -- Get some imitrex shots and take them on board with you (not a bad idea to take a script along with them). If you get hit SHOOT UP! Don't give a damn what anyone thinks. I've done it more times than I ever want to think about. I always carried a note from my doc saying that I suffered from CH and that I needed certain meds, that I carried syringes and if I got hit I needed O2, etc. It's been handy in foreign countries a lot of times and on airplanes. When you go overseas take enough meds (even if you're NOT in an episode) to get you thru while you're gone - Be a boy scout - go PREPARED! But take a note from your doc to get you thru customs. And the topamax (I've been on it since 99 - I'm chronic) and it's been my miracle drug. I take the whole dose at night and don't experience the side effects that a lot of people complain about. Also Melatonin (12-15mg) at night help a lot of us get thru the REM sleep and avoid the night hits. Red Bull energy drink at the first sign of CH sometimes aborts a hit. And of course O2 has been the best thing since sliced bread for the biggest part of us (doesn't work for everyone, but MOST of us). 15 liters with a non-rebreater mask (the mask is very important). Alcohol is a big trigger for a big part of the people here (doesn't seem to bother SOME of us) so I'd suggest you stay away from that during a hit. MSG has been known to trigger some. Other foods (mostly the migraine triggers) haven't proven out to be a trigger except for a very few. The only thing I've seen that triggers mine is the barometer, but we're all different. You just have to watch and see what triggers you and then don't do it. **Note: What triggers one MIGHT NOT trigger the next one -- this bastard is tricky and doesn't follow any rules. Anyhow welcome to Clusterville and your new family. And know now YOU ARE NOT ALONE. Hugs BD (you can call me Granny) |
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Title: Re: Available for adoption Post by mcashes on Mar 5th, 2008, 9:17am Wow, the positive feedback just keeps coming! Allow me to respond. Superdave - that's right "coon-ass" wana fight about it? ;) Richard - Nope, not working there was just sent over to share some analysis techniques we've developed here in the US. Nothing short of amazing what they are doing over there. I'm not convinced it's all good, but the coastal engineering community will learn a lot as a result of it anyway. Except this time, if it all goes bad, we don't pay the consequences. Helen - grass cutting & car fixin I can handle. Mama taught me that diswashers were the things at the ends of my arms so, I think you'll need a medical doctor if you're having trouble with those. Granny - farm chores I can deal with too. This buisness about engineers with quirks I don't quite understand though? On the other hand, some say it's kinda quirky that I find participating in community theater enjoyable? My 16 year old and I will open a play called "Southern Discomfort" this friday, here in Vicksburg, MS. Regardless of my condition, I simply could not pass up auditioning for this one. It's a real hoot! As you might tell, ya'all have made me feel so much better in just 24 hours that I can't imagine what tomorrow will be like. Thanks so much. Mark |
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Title: Re: Available for adoption Post by vietvet2tours on Mar 5th, 2008, 9:47am on 03/04/08 at 20:53:25, kevmd wrote:
Yesssssssssssss |
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Title: Re: Available for adoption Post by GrandPotentate on Mar 6th, 2008, 8:31am I found overseas travel during a cycle was intolerable. I marched around a couple towns during evenings, and did laps in my hotel room at night. Coming home got me to the ER with might best be described as overlapping 0-10's. But that was before diagnosis, before oxygen, and I also had a lot of caffiene and nicotiene rushes thrown in. OXYGEN. Did anybody mention to try that? Discuss it with your doc after reading up here and the Ouch site. I'm cyclic and pretty seasonal, so I tend to lead a pretty simple life every spring - don't drink, don't travel (even a car is intolerable during a hit), get myself on a relatively rigid regular daily schedule. Between cycles, I make up for lost time. Been all over, even ate Chinese food in China. Just got got back from drinkin stout in Ireland. I've no experience with imitrex, but intend to discuss. Oh by the way, Oxygen works pretty well fo me. I hope your cycle are short and your hits mild. |
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Title: Re: Available for adoption Post by PollyPocket on Mar 6th, 2008, 5:48pm Brother Mark :) (Nice Dennis, very nice!) Welcome brother. You and your wife will share in one helluva family here, and the info and support y'all will have will be the best thing you can find. I can't help ya much with the "travelling ch" situation, but I will add that as a recent o2 user, I am a forever believer in how fast it can work if used at the immediate onset. Its really the only abortive that has ever worked for me. Your story sounds like so many of us.. feeling alone and isolated with this, and on more than one occasion I think a lot of us have prayed the same prayer.... take IT or ME. Head smashing pain kinda make one do that! Here you'll find a wealth of info to help you manage your CH, and also how to live- really LIVE- between hits. Welcome home! |
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Title: Re: Available for adoption Post by Kaib on Mar 6th, 2008, 6:21pm Howdy Mark, I felt so very alone till I found this group. Its been a lifesaver. I may be nearing the end of this cycle (oh boy!!!), but the two biggest things I have taken away from here are: The support of a raft of fellow CH'ers and the concept of life during the pain free periods, i.e. it'll go away, take advantage of the space between. I no longer dread my hits, but deal with them one at a time. The board has also convinced me to go drug free and try the Clusterbuster method next time. Here's to beers...for all! |
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Title: Re: Available for adoption Post by Emily on Mar 14th, 2008, 6:04am Welcome to the site! I've travelled a few times and it hasn't been too bad, but I've been taking melatonin which helps with the sleep deprivation and adjusting the body clock. Before I found this site, I was depressed, lonely and feeling pretty darn crap (having being diagnosed with some *freak* headaches ;)). However, you'll probably find that this community will be almost as good as any drug you'll find! I did anyway. The support that is available here is excellent and there's always someone around to listen to whatever it is you want to talk about. Check out the general posts for non-CH talk - lots of things there to keep spirits high. Welcome again, Em x |
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Title: Re: Available for adoption Post by Linda_Howell on Mar 14th, 2008, 2:34pm Quote:
Mark, Please take a look at my thread on the General board and the reponses from folks here, regarding Topamax. Just a thought that you may want to check out with your Dr. and maybe switch to another preventative. http://www.clusterheadaches.com/wwwboard/index.html Linda |
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