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Title: Blissfull sleep Post by ^Mark on May 24th, 2003, 9:26pm I have a need to write off some stuff. I think I will just do a "this is me", in any order my brain allows me to. I am one of the lucky ones, who get both migraines and clusters. The migraines I got from my mom (my sister has those too). Fortunately for me, the migraines aren't all that bad. There's no nausea or vomitting, no over-sensitivity to light, or any of the bad stuff. Just the urgent need to keep real quiet and still, no exertion, and a 3 day overpowering feeling of 2 metric tons of cotton wool being stuffed into my head with a sledge hammer. These I've had all my life, about 3 to 5 times a year. These I don't treat with anything but rest. These I can live with. The clusters started in august 95 when I was 28 (a quick calculation makes me 36 now). Since then I've enjoyed the hospitality of the Hell-hotel 5 times on an 18-20 month cycle. I will have an episode of anywhere between 4 and 17 weeks, having 3 to 6 bouts per day. This is usually followed by period of almost 18 months, during which I may only very occasionally have an attack (maybe as few as 1 bout per 2 or 3 months). These are harder to deal with. These I have to treat with medication. Luckily my doctor referred me to a neurologist about 3-4 weeks into the episode, after having tried several medications (Ergot, Cafergot, etc) which helped for a few bouts, then stopped. Within 10 minutes of visiting the neurologist, he told me that I had almost quoted him the book on Cluster Headaches, and that he could help me. He gave me Imigran injections (European or maybe just Dutch name for Imitrex). The first episode lasted in total 14 weeks, with 2-3 bouts a day. I thank him and God (in that order) for Imitrex. It's the only thing I use, coz it's the only thing that works for me. I may still try out the oxygen therapy though. I wrote a homepage about clusters in 96, but to be honest, that's mostly become a cobweb now, seriously in need of revision. (URL on demand) The second episode was early 98 and lasted for about 5-6 weeks. Still only 2-3 bouts a day. Then the really bad one in 2000. I was on a round-the-world, 8 week holiday. 3 weeks into the holiday I was in Hawaii staying with friends when they hit in force. The intensity and frequency were both turned up to maximum. Anywhere between 4 and 7 attacks per day, each of which would literally bring me to my knees and reduce me to a pathetic, shivering heap of human flesh. Unfortunately, I couldn't get myself off the island and back home as my airline couldn't transfer me to any other earlier flight then the one I had booked. In just under 3 weeks in Hawaii I spent about $4000 dollars just on doctor's visits and Imitrex alone. Why didn't I just book a flight home, you say? The medical cost was covered on my worldwide health insurance. The extra flight would not have been. And believe it or not, I did enjoy the few, but very precious hours in between the attacks. Needless to say I cut my holiday short after the Hawaii stay and went home 3 weeks early. This episode lasted 17 weeks with 4-7 bouts per day. I'm on an 18-20 month cycle. I will have an episode of anywhere between 4 and 17 weeks, having 3 to 6 bouts per day. This is usually followed by period of almost 18 months, during which I may only very occasionally have an attack (maybe as few as 1 bout per 2 or 3 months). I exclusively use Imigran (the Dutch name for Imitrex). Since I was declared otherwise completely physically healthy, my neurologist lets me use as many shots per day as I need, although I do try to keep it at a maximum of 4 per day. I have no side-effects whatsoever from using more then 2 per day. No rebound headaches, no dependancy, no increased bloodpressure, just a light-headedness or floatiness for a few minutes after the pain dies down. I am just now on the up-curve of a new episode. It started about 2 weeks ago with just 1 headache a day. But that changed after a few days, steadily increasing to 4 to 5 a day at this time. The last 4 days I can pretty much time them; 3am, 7:30am, noon'ish, 4:30pm, 10pm. I hope this won't be a full-fledged 17 weeks again, although however long it lasts, it'll feel like a lifetime. It's 4am now, I woke up an hour ago because it felt like my eye was slowly being pushed out of its socket by the red-hot nail slowly being pushed in through my left temple. My body is seriously demanding more sleep, but my brain is adamantly rejecting the idea, because it knows what might happen when I go to sleep. Anyways, this is me. This is my rant. This I had an urgent need to tell someone right now. Even if it's 'just' to a bulletin board. You know how it is. What I wouldn't give to just lay down, and drift off into a blissfull, un-interrupted, 3 day sleep....... |
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Title: Re: Blissfull sleep Post by Charlie on May 24th, 2003, 10:05pm Yikes. We've all been there one way or another but it's clear that we're defectively assembled. Thanks for the story and I hope things straighten out. Here is a thing that I used very successfull: Dr. Wright's Circulatory Technique This is not transcendental meditation, imagery, relaxation, or anything psychic. It's entirely physical and takes a lot of work and concentration. Give this method a good workout. It’s not a miracle, but it’s been helpful to many. When I was diagnosed, my neurologist said to treat this as a vascular problem. I was told to concentrate on “redirecting” blood circulation in order to retard flow to the head. This is done by trying to “send” blood into the arms and hands or other extremities. When properly done, your hands will become warm and redder with increased circulation. I also found it easier to concentrate on one hand. This relieves just slightly, the pressure on the affected vessel, which indirectly causes our pain. We all have this ability but it can be exhausting. I was often able shorten my attacks from about half an hour to no more than a few minutes. Sometimes, when awake, I could entirely abort the attack IF I KEPT AT IT. Often, I would suffer only minor discomfort instead of excruciating pain. Do not stop just because your hands are warm or redder. Keep this up until you are sure it's subsided. If you let up or lose concentration, it’s very hard to restart this process. It may take some time but when this works, the relief is almost immediate. I learned this from the doctor in a few minutes. He simply told me to try to keep blood away from the head. He thought it easiest to concentrate on the arms and hands but any place that works for you is fine. He said to think of it as "filling your hands" with redirected blood. It’s important to keep at it THROUGH the pain. This will be difficult, but it’s the only way this technique will work. Don’t let up until you are sure the attack has ended. This will not always work, but I think it will always have at least some effect on the severity and duration of the attacks. It can be useful between medications or while waiting for some other drug to take effect. All it takes is a little practice. It was fairly easy to learn and what I'm writing here is more than I got from the doctor, as I've drawn from my own experience. When awakened in horrible pain, it’s very hard to focus, but I think it’s always worth a try. This costs nothing but hard work, is harmless, non-invasive, and it gives us a fighting chance. I wish you the best of luck - Charlie Strand |
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Title: Re: Blissfull sleep Post by KingOfPain on May 24th, 2003, 11:35pm Sleep? ??? ??? ??? ??? ??? ??? What the heck is that? KingOfPain |
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Title: Re: Blissfull sleep Post by cbolony on May 25th, 2003, 5:30am Mark sorry to hear about all the pain you are having.I also get 3-5 CH aday in cycle make sure you use the imitrex tip on the left side of the board it well make the imitrex last longer.If you don't like using the imitrex tip you can also get the imitrex in vials and load the needles yourself. |
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Title: Re: Blissfull sleep Post by jonny on May 25th, 2003, 8:12am Cootie, Grab the oar and smash the new guy in the head so he sits down, now hand him the oar...new dude, start rowing and shaaadup! Ok, where were we.....oh ya!! STROKE...STROKE...STROKE and so on. ..............................................jonny |
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Title: Re: Blissfull sleep Post by ^Mark on May 25th, 2003, 8:16am on 05/25/03 at 08:12:45, jonny wrote:
??? |
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Title: Re: Blissfull sleep Post by catlind on May 25th, 2003, 8:21am Mark, I'm sorry to hear that you are suffering so badly right now, but I'm delighted that you've found us here in clusterville. You have found the most caring, supportive, understanding group of people on the planet when it comes to CH. Here you will find a group of people that know and understand your pain, you have found a home. Pull up a chair, and as jonny says, an oar, and help us row the boat to a cure. Read read and read some more. The black squiggles in these pages will give you much information to help you battle the beast. Welcome home. Cat |
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Title: Re: Blissfull sleep Post by catlind on May 25th, 2003, 8:23am Mark, that's jonny's way of saying welcome to the board :) Don't fret he means nothing negative, you will get used to his way with words as you read through the posts and get to know us all :) Part of suffering CH means having a warped and twisted sense of humo(u)r hehe. Cat |
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Title: Re: Blissfull sleep Post by jonny on May 25th, 2003, 8:28am Welcome aboard, Mark To me this is one big boat and we are rowing towards a cure. Every new guy gets it up side the head.....LOL Now sit down and shaaaduup ;D ..............................................jonny Oh ya.......FU Cat!!!!! ;D Don, answer my IM you marbled mouth prick!!! |
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Title: Re: Blissfull sleep Post by don on May 25th, 2003, 8:32am mark why aren't you on a preventative (i.e verapimil) ? Prednisone will give you some well earned relief during a cycle also. |
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Title: Re: Blissfull sleep Post by ^Mark on May 25th, 2003, 8:37am on 05/25/03 at 08:23:33, catlind wrote:
Well, okay .. at least then I won't stand out in the crowd. Quote:
Oh crap .. now I have to deal with a rowboat as well? I detest rowing ;D Would you know that I almost feel like it was .. uhm (dumb Dutchie looking for right word) .. providence, to have written that piece early this morning? After getting that frusty rant out of my system, I went to bed .. and slept ... ... ... for a fine, totally awesome, un-interrupted, blissful .. read them and weep .. 10, yes TEN, hours !!! |
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Title: Re: Blissfull sleep Post by catlind on May 25th, 2003, 8:38am FU? I'm not FU, I'm cat :) Luv ya bro Mark, congrats on the sleep!! A little sleep goes a loooooooooong way with this affliction. Cat |
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Title: Re: Blissfull sleep Post by jonny on May 25th, 2003, 8:43am Ahhhh, sleep I know it well, CH has given up on me and I rest well. ......................................jonny FU Cat ;D |
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Title: Re: Blissfull sleep Post by ^Mark on May 25th, 2003, 8:46am on 05/25/03 at 08:32:30, don wrote:
During my 2000 cycle, my neurologist put me on 5mg of Verapamil. After 2 weeks of no single reaction or change, I was put on 10mg. That certainly did something. It made my fingers tingle and it cranked up the frequency of the attacks. I'm getting by on the Imitrex shots. Sure, my inner left thigh feels like a pincushion, but that'll mend. Both me and my neurologist are a bit hesitant about taking any kind of corticosteroids. I'm not sure why, perhaps because I've read some pretty gruesome stories about corticosteroid side effects and addictions ... |
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Title: Re: Blissfull sleep Post by catlind on May 25th, 2003, 8:47am Mark, The average dosage of verap as a prev. for CH is in the starting range of 240mg. Some folks take up to 960mg. As for the prednisone, I took it once, and it did break the cycle. The side effects were horrendous and I will never take them again. CH can't kill you, pred can. That's just my opinion :) Cat |
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Title: Re: Blissfull sleep Post by jonny on May 25th, 2003, 8:51am LMMFAO!!! Shoot it up to 480 a day, 10 mgs will do nothing for nobody. Man!!!!, find a new Doc. ..........................................jonny |
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Title: Re: Blissfull sleep Post by ^Mark on May 25th, 2003, 8:51am on 05/25/03 at 08:47:56, catlind wrote:
I don't remember correctly, it was a while ago and I wasn't all that lucid at the time. All I remember was that I jumped from 4 to 7 attacks per day on the higher dose, and when I stopped, dropped back to 4. -M |
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Title: Re: Blissfull sleep Post by cathy on May 25th, 2003, 8:52am Mark Welcome to the crew! If Cat's around you need to watch out for the 'Flying Ducks' ;) Glad to see you got some sleep, bright eyed and bushy tailed. Cathy :) |
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Title: Re: Blissfull sleep Post by catlind on May 25th, 2003, 8:55am Mark, bummer that it didn't work for you :( There are others who have had that same result with verap. There are other preventatives out there to try if you are so inclined. I am seeing many people who are episodic (not chronic) have their best luck with a med free regimen. I hope you continue with at least 18months between cycles, and that soon you go to NO cycles like our resident remission expert Charlie :) Cat |
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Title: Re: Blissfull sleep Post by don on May 25th, 2003, 9:06am Quote:
Any med can kill you, but probably wont if taken under medically supervised conditions. Pred. side affects can be uncomfortable, but for me its worth it to improve the quality of life even if only for a few weeks. |
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Title: Re: Blissfull sleep Post by jonny on May 25th, 2003, 9:18am I guess its whos taking it. Put me in a state of "Cant walk" I need to pace with me CH so I told the Doc to Shove it. ..............................................jonny Answer my IM you marbled mouth prick ;D |
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Title: Re: Blissfull sleep Post by oringkid on May 25th, 2003, 12:40pm Welcome Mark! Love your pic, "The Scream" is one of my favorites! Bet that bashing in the head with the oar doesn't hurt half as much as the CH! Sherry |
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Title: Re: Blissfull sleep Post by paul_b on May 25th, 2003, 2:29pm Get the O2 and keep it by your bed. Good stuff if you use it as soon as you feel the pain coming on. Never really helped me when I awoke with the Big Beast in full force. By the way, some of us prefer canoe travel---no oars. ;D |
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Title: Re: Blissfull sleep Post by AlienSpaceBabe on May 25th, 2003, 3:29pm on 05/25/03 at 09:06:13, don wrote:
does getting your nipple pierced whilst on prednisone count as a side effect? ASB |
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Title: Re: Blissfull sleep Post by don on May 25th, 2003, 4:13pm If skewering yourself improves your quality of life then skewer on! |
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Title: Re: Blissfull sleep Post by Miklos on May 25th, 2003, 7:25pm I had to have my right hip replaced at age 51, 1997, due to avascular necrosis. According to my orthopedic oncologist, 35% of AVN is associated with steroid use, 25% alcohol abuse and the remaining percentage is: "Who the hell knows?" These numbers are substantiated by the National Institute of Health. Since AVN tends to be bilaterally symmetrical, he has recommended that I never take Prednisone for cluster headaches (or other problems) again for any reason unless I am going to die if I do NOT take it. If I must take a steroid prescription, I am to schedule a tomographic x-ray series six months later so he can determine how soon I get to have the left hip replaced. The doctor may be overly dramatic. Since I do not abuse alcohol, a one in three chance for a second hip replacement suggests that Prednisone may not be the prescription of choice for me. |
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Title: Re: Blissfull sleep Post by brain_cramps on May 25th, 2003, 7:31pm on 05/25/03 at 19:25:13, Miklos wrote:
Tell that to Bo Jackson... betcha he'd be confused! ;D |
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Title: Re: Blissfull sleep Post by Miklos on May 25th, 2003, 7:44pm As I recall, Bo Jackson had his hip replacement at age 28. Since these prothestics are typically good only for 12 to 15 years; odds are that, unless he avoids all impact exercise, another replacement will be required. One can rarely have more than a second replacement. This is because they have to cut more of the femur off to stick the barbed prosthetic pin in to re-attach the prosthetic to the bone The socket is easy. One rarely has enough femur left for a third replacement. Since I am short, thirds are highly unlikely for me. I never run when I can walk; I never walk when I can crawl. Don't catch many girls anymore though. |
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Title: Re: Blissfull sleep Post by jonny on May 25th, 2003, 7:48pm on 05/25/03 at 19:44:02, Miklos wrote:
You?......Girls? Im not going there.....LOL ;D ..........................................jonny |
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Title: Re: Blissfull sleep Post by ^Mark on May 25th, 2003, 7:57pm on 05/25/03 at 08:12:45, jonny wrote:
you can go blind doing that, Jon ;D |
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Title: Re: Blissfull sleep Post by jonny on May 25th, 2003, 8:08pm on 05/25/03 at 19:57:27, ^Mark wrote:
I guess no one told you, I am blind....my spotter just told me about this post. Thanks for the warning. ..................................jon ;D |
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Title: Re: Blissfull sleep Post by Miklos on May 25th, 2003, 8:15pm Years ago, an IBM vp asked me why I was so tan in early March. My response was, "Chasing young boys." The veep turned around and walked away while my partner was hollering, "He's a soccer referee! He's a soccer referee!" Never got promoted after that. |
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Title: Re: Blissfull sleep Post by jonny on May 25th, 2003, 8:28pm on 05/25/03 at 20:15:12, Miklos wrote:
um.......Im not touching that, if I did I would have to kill you!! |
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Title: Re: Blissfull sleep Post by Mikey on May 25th, 2003, 8:47pm Welcome aboard Mark! Get yer self an oar and row row row! Please go up on the Verapamil, i use 720 mgs a day. Now that is about as far as you can go on the stuff, but if you want some relief it maybe the only way. There are a lot of other preventives as well, like possibly Depakote, Lithium, sansert, and the list goes on. Talk to yer Doc about them and let us know what happens. Keep in touch, Mikey, ;D |
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Title: Re: Blissfull sleep Post by OneEyeBlind on May 25th, 2003, 9:55pm Sorry you had to come to the board, and really sorry that you have so much pain. Imitrex is a life saver for me. It was the only thing that worked (the shots)... but then when the cycle didn't end, and the doc thought I was doing too much imitrex they ordered O2. Well, that worked for me as long as I caught the headache in time. Think about trying the O2 as a backup. Might work for you as well. PFDAN's to ya bud !!!!!!!!!! |
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Title: Re: Blissfull sleep Post by ^Mark on May 26th, 2003, 2:40pm Call it coincidence, call it providence .. Oh wait, I did that myself a few posts back.. duh I have now gone over 48 hours without as much as a aura or shadow I'm exstatic, I don't know what to do with myself.. I'd go celebrate and get drunk, if I weren't afraid of the alcohol-triggered kickback |
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Title: Re: Blissfull sleep Post by Wendy the Brit on May 26th, 2003, 6:04pm Hello Mark and welcome to the madhouse. There's loads of great advice and help here for clusters as you can see. I also am one of the lucky ones here who gets migraine and cluster. Clusters are elusive beasties and every person's best treatment varies, but (I'm going to get killed here because meegraines are nearly taboo) what are you doing about the migraine? They feel like a small bop on the head with pillow in comparison with cluster but you don't need to suffer any of the symptoms you describe, which although not severe, must interfere with your life. I find Zomig kills them stone dead in about 30 minutes and it seems to prevent the thick headed aftermath as well. I can dry swallow a Zomig while driving on a motorway, keep driving and be in a meeting and functioning semi normally 25 minutes later. Some people even find Zomig helps clusters (doesn't for me, I have Imigran like you for the clusters) Anyway, good luck with dealing with the big beast, just don't forget that the baby beast is much easier to cure and there is no need nowadays for it to affect your life too much. Wendy the Brit |
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Title: Re: Blissfull sleep Post by ^Mark on May 26th, 2003, 6:14pm The migraines aren't bad enough to really interfere in my life. Usually an Ibuprofen 600, or a couple of paracetamols will help me continue to function, to a degree. I mean, concentration level is down, but that's only to be expected. the circulatory technique kinda sounds like something I do to get my attention away from the migraines. To bad it doesn't help me with the bigger beast. |
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