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Title: New here and relieved to find others Post by mikey_fromtheblock on Jul 2nd, 2003, 12:46pm Hi, everyone. Wanted to introduce myself. I see there's already a Mikey round these parts, and I'm not connected with him in any way. I'm Michael, 29 and from Norwich, England. Right now, I feel like sticking a fork into my right temple to let what feels like unbearable pressure escape from my head. I remember reading about an old operation called Trephinning once at school, and that sounds pretty appealing right now. Basically, I think (can I be sure?) I suffer from cluster headaches. My first attack was in 1995 while at University, and I nearly dropped out as a result. I stuck at it, though I had to give up a number of things because, you know how it is, I didn't feel like going outside or being around anybody, never mind having to be sociable. After around two months of on-off splitting headaches (always the right side of the head), they vanished. How odd, I thought, but I was relieved to have my life back. Then, 1998, the same happened. By this time, I was in my first full-time job and, despite reasonable sympathy from the management, I had a lot of time off and took pretty much every painkiller I could lay my grubby hands on. I was prescribed Tylex, which didn't touch the pain, and then acupuncture, which seemed to work briefly but the right side of my head would still pound, my eye would water and it would feel like my teeth were going to fall out. I guess some, if not all, of this sounds familiar. Now it's a yearly occurence, but this time it's worse than ever. The current headache is a really sharp stabbing sensation in my right temple. I'm squinting as I type this (Excuse any typo's, please!), and what's really worrying me is that it came on around midnight and has been with me ever since - that's about 19 hours for now. It dies down for a bit (though I can still just about feel it) and then flares up again and all I can do is sit still with my hand to my head. Oh, and I keep blowing my nose too; though nothing seems to come out, I feel like I have to. So, what am I doing about it? That's a good question. I'm seeing the doctor tomorrow morning at 9.30am... which means it'll be 10.30am, but I don't mind as long as there's something he can recommend me. Over the last year or so, I've tried the following with no success: aspirin, paracetamol, co-codamol, Tylex, olbas oil, antihistamines, allergy tablets (limited success, but short-lived), soluble painkillers, early nights, lots of water, lots of food, acupuncture, accupressure massage, decongenstant tablets, and, um, a generally known, almost-decriminalised recreational drug (I don't know if I am allowed to name it) - nothing seems to shift the b*st*rd pain. So I'm fed up. But I'm happy to have found some fellow travellers, and I look forward to, well, I don't know really - offering support, I guess. Outside this battle against pain, I'm a computer system designer for a large faceless corporation. I also write, both short story fiction and music reviews and the occasional editorial for a magazine (shameless plug: www.uk-fusion.com). I like playing guitar, indian food, cricket, and books & cinema. Most of all, I like feeling pain-free! But anyway, that's probably enough from me for now. Looking forward to some conversations and learning more about the condition. Michael |
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Title: Re: New here and relieved to find others Post by Miklos on Jul 2nd, 2003, 12:55pm This is a good place to be if you are in misery. Read all the other newcomer posts and cut-and-paste the temporary suggestions which may help until you see a doctor for more specific suggestions. After that, your fellow UK sufferers will land on you. Definitely a good thing. |
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Title: Re: New here and relieved to find others Post by Mark C on Jul 2nd, 2003, 12:59pm Welcome Aboard Michael, Grab an oar and start rowing. I am sorry to say at first glance you seem to qualify for membership...bummer...however there is a bright side and you have already found it, HERE! In preperation for you Doctor visit tomorrow start printing stuff from this site and the OUCH (http://www.clusterheadaches.org/) site. Be prepared, in this battle knowledge is power. I will attach a favorite link here (http://www.mhni.com/faqs_cluster.html) to assist in your crash course. A good HA diary can be found here. (http://www.headaches.org/professional/educationresources/PDF/headache_diary.pdf) It can aid in identifying triggers. Good Luck! PFDAN's Mark |
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Title: Re: New here and relieved to find others Post by mikey_fromtheblock on Jul 2nd, 2003, 1:16pm Thank you both for the welcome, and the useful links. My case notes should show a history of headaches, but yes, some printouts would be useful (I have a set I took from the internet at work today, but these extra links also look valuable.) :) |
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Title: Re: New here and relieved to find others Post by Live4Fun on Jul 2nd, 2003, 2:02pm Welcome aboard Mikey # 2 ;D Glad you found us, but sorry you had too. Good luck with the doc tomorrow. In the mean time keep kickin' the beast's a$$. Oh, and keep us posted as to what happened at the doctors. PFDANs to ya, Bryan |
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Title: New here and relieved to find others Post by Bob_Johnson on Jul 2nd, 2003, 2:37pm Couple of UK sites you may wish to explore: www.clusterheadaches.org.uk, and WWW.MELDRUM.DEMON.CO.UK/migraine. At bottom of home page, look for FAQ on clusters: four sections of extensive material; strong on treatment options. |
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Title: Re: New here and relieved to find others Post by jminmilwaukee on Jul 2nd, 2003, 2:51pm Welcome! You are home now. Jmin |
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Title: Re: New here and relieved to find others Post by Karla on Jul 2nd, 2003, 3:07pm Make sure you ask your dr. for a perscription for imigran, vepramil and oxygen. The oxygen should be in a full face mask not the little nose cannules. At a flow rate of 10-12 littlers per min. for 15 min. The vepramil should be started at a low dose and slowely raised to a high dose until it takes effect. You can go up to 960 pretty safely. This is the most common popular drug that works to prevent clusters and is a good medicine to start on. Imigran/imitrix is good in shot form or in nasal spray. Skip the pills they take to long to kick in. Look over the list of medicines on the tab to the left of the screen. They will have other meds you can try if the verapamil fails. good luck! |
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Title: Re: New here and relieved to find others Post by echo on Jul 2nd, 2003, 4:03pm Welcome to the MB. Sorry you needed to search us out, glad you found us. Lots of information and member support available here. |
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Title: Re: New here and relieved to find others Post by don on Jul 2nd, 2003, 4:23pm Heres another OUCH site that will be helpful....... http://www.clusterheadaches.org.uk/ |
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Title: Re: New here and relieved to find others Post by cathy on Jul 2nd, 2003, 4:38pm Well Mickey how you diddling...?? Your not far from me, im just the other side of Kings Lynn...I'd love to say great to welcome you, but it's not cos that means your suffering....but welcome to the board, thank god someone who will understand my sick british sense of humour.... ;D Catch you later. Cathy :) |
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Title: Re: New here and relieved to find others Post by CathiP on Jul 2nd, 2003, 4:59pm S'Okay.....we got Wendy the Brit....now we got Mikey the Brit!!! Welcome Mikey!! Please don't confuse me with Cathy.....she's from the UK....but.....well, can you keep a secret? She's a real trubblemaker.......and she says and does positively scandalous things! I'd be remiss if I didn't warn you.....actually, some around here call her TRUBBLE!! ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D ;D Now that I've gotten that important tidbit out......welcome, Mikey....as above, put your feet up, get comfy.....and read.......learn everything you can about Clusters, ask questions-there is a ton of information here, and a lot of support as well. It is sad you must deal with CH, but I'm glad you found your way here. Wishing you PFDAN, Cathi(not to be confused with Cathy) ;) |
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Title: Re: New here and relieved to find others Post by sargeslope on Jul 2nd, 2003, 5:03pm Hey Mr. Mike, I am new to the board, but not to CH. I had a 4 year remission until a couple of weeks ago. This thing can really be hard to predict. So, I just wanted to offer my solution. Like most things, you have to try it for yourself and treat people's opinions like a$$holes. Everyone has one and most of them stink. First off, Meds do not help me. I don't want to suggest that you not try different things, including meds, and by all means, do what your doc says. But, the ONLY thing that has ever worked for me is exercise. I used to use a Nordic Trac ski machine (anything non-impact should work), but now I don't have one. In my most recent episode, I have been using weights. It sounds silly and "homeopathic", but it works. I have lifted weights at the early stages to prevent an attack and I have used them during a night time attack. In all cases, the pain subsides astonishingly quickly (10-15 minutes). And and added bonus is that the pain drops off instead of slowly subsiding. I believe it has something to do with redirecting the blood flow and oxygen to those muscles being worked out. Also, a colleague of mine suggested that it may be due to the lowering of blood pressure during exercise. I ain't no fizishun, but I don't care about the "whys" as long I am PF. :D Anyway, it costs nothing to exercise, there's nothing to add to your bloodstream and it's worth a shot!! |
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Title: Re: New here and relieved to find others Post by cathy on Jul 2nd, 2003, 6:42pm Excussssssssseeeeeee me...Mickey as a fellow Brit, I feel it is only fair to tell you that Cathi aka as Double Gussett is the TRUBBLE MAKER.... Cathy :) |
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Title: Re: New here and relieved to find others Post by kellya408 on Jul 2nd, 2003, 7:19pm Hi Mikey - I'm new to the board as well (although not to CH - just finally received the correct diagnosis). I've made the time (head willing) to try and log on for at least a few minutes when I get home. Everyone here has been wonderful - and it is a great relief to know there are other people who understand these headaches. I've had people at work snicker/giggle when I describe the pain and the measures I would contemplate to get the pain to stop. But I just have to remember they have no idea. Good luck at the doctors! Kelly |
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Title: Re: New here and relieved to find others Post by BlackDog on Jul 2nd, 2003, 11:03pm Mikey, I just wanted to say HI and WELCOME. Sorry you have a reason to be here, but you have struck gold by finding this place. Best of luck to you tomorrow...let us know what happens. Hope you are PF soon. Darren :) (episodic - 2 years) |
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Title: Re: New here and relieved to find others Post by Charlie on Jul 2nd, 2003, 11:14pm Welcome aboard Michael. Sorry you are experiencing this horror but stick around and feel free to rant. It's what we're here for. Here is Simon's letter from the UK site. You may have seen it but if not, take a look. It's helped many explain that this is not a "headache." http://www.ouch-uk.org/ch/note_colleagues.cfm Here is a technique that helped me retain my sanity when getting hit: 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: New here and relieved to find others Post by katethecelt on Jul 2nd, 2003, 11:18pm Mikey, Welcome to the family. Good luck at your doctor's appointment. Please check the Medications Board and look for Svenn's "cocktail" - it's a combination of Prednisone (tapering down from 80mg to start) and Verapamil. I think the dosage of Verap is 120mg 5-7 times a day. Some CHer's have had success with either the sustained release or regular release Verapamil - I had to try both. I hope you kick the Beast out the door soon - now would be good. Oh, give Charlie's method a try. It works for me if I catch the CH soon enough, but it does take real concentration and some practice. Don't give up on it. I can email it to you if he doesn't post it. Let me know. Wishing you Pain Free Days and Nights, Kate |
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Title: Re: New here and relieved to find others Post by mikey_fromtheblock on Jul 9th, 2003, 12:23pm Hello again :) Just want to thank you all for the warm welcome once again. I'm back at the doc's tomorrow, and, having researched this pretty thoroughly, I shall ask for - no, I shall DEMAND - Verapamil. Sounds like the best bet from what I've read up on. I'll let you know if they have any effect too. |
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Title: Re: New here and relieved to find others Post by mikey_fromtheblock on Jul 9th, 2003, 12:42pm Oh yeah - has anyone found that exercise helps? I felt one coming on today but luckily I was at home and remembered reading something about exercise on the site, so I lifted weights (only little ones, about 6kg on each dumbell) for about 10 minutes and it seemed to send the little bastard away for the time being... just thought I'd mention it. |
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Title: Re: New here and relieved to find others Post by BobG on Jul 9th, 2003, 12:57pm You are not the first to use excerise to abort an attack. I have no idea why it helps. Getting the heart rate up? Breathing harder = more oxygen? As long as it works go for it. |
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Title: Re: New here and relieved to find others Post by CJohnson on Jul 9th, 2003, 12:59pm Running works for me in much the same way. Exercise increases brain serotonin levels which may, for some, cause the 5HT1d receptors to become occupied, thus inhibiting the release of pain and inflammation generating neuropeptides. PFDANs -Curtis |
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Title: Re: New here and relieved to find others Post by pablo on Jul 9th, 2003, 1:39pm FWIW, exercise triggers The Beast for me and several others... we have a thread going here: http://www.clusterheadaches.com/cgi-bin/yabb/YaBB.cgi?board=general;action=display;num=1057256741 YMMV! Oh, where are my manner's? Welcome! |
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Title: Re: New here and relieved to find others Post by Charlie on Jul 10th, 2003, 3:03am Hi Mikey and sorry this horror is lingering. I have little experience with drugs other than a form of Propranohol, called Inderal here. It was one thing that was around back in the 70s. I used it only after the attacks began. Although there aren't many success stories, it worked well in a week or so after taking the stuff. Not 100% but it definitely made things a bit more bearable. There are many posts about exercise and mostly positive. My theory is that it may be like my technique in that it may force a lessening of pressure in the head as muscles need O2 and blood is the mechanism. My favorite story was of a man who said standing barefoot on a concrete floor would usually shorten the attack. It would be nice to have some confirmation though. Sorry for the chatty post but I'm worse in person. Tell us how you make out. Charlie |
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