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Title: The shock of finding you are not alone Post by Dragnlance on Feb 5th, 2006, 12:58pm Hello! I have had headaches all my life. I just read Simon's Letter, and was amazed at my reaction. I am at work, and not noted for being emotional. Yet, I was all I could do not to break down in public, because, here, was evidence that I am not alone. It wasn't until 5 years ago that I was officially diagnosed with chronic CH. At 42, I grew up with the public's attitude of "grow up and be a man, it is just a headache". I remember my 4th grade art teacher telling me, (in an effort to curb what he thought was asprin abuse) that for every asprin I consumed, I would lose a year of my life. I have seen countless doctors, and the rule of thumb always has been, take some pain killers and give me your money, and go away. Often I would be perscribed items such as hydrocodone or Motrin 800 or 1200. Seven years ago was a turning point in my life, as I accidently found a Doctor that knew something of headaches! A little over a month later, when my wife took me to the emergency room for a CH bout, I found a second Doctor! It was these two that were able to refer me to a Nerologist that is known to deal with chonic headaches. I am tired of the drugs. Three years ago I quit the treatments because I was taking 4 different pills a couple times a day, which did help keep the CH away, but also fogged my brain so bad that thinking my way thru any problem at all was a chore. The worst part is that I can positivley identify 3 kinds of headaches that I typically get. I get clusters, migraines and tension. A cluster always brings on a tension headache. Everyone around me knows when I get one of my headaches. My left eye gets very bloodshot, I turn quite pale, and a sheen of sweat appears on my forehead. Many times they know I am getting one before I do. The migraines are rare, but I have had several over the last few months. I had gone for years without a migraine, and had forgotten what they are like. (I will trade a CH for a migraine any day of the week!!) **that comment will make people step away from you in a hurry!!** I explained my symptoms to a co-worker who told me that is a classic migraine. Really wierd, compaired to what I normally get, and not near as miserable! My younger brother also gets clusters, but he has been diagnosed with Beschett's (spelling) Syndrome, which is known to have issues with CH. I don't have the other symptoms that he has, so I don't believe that I also have Beschett's. I have found, that for very small amounts of relief, standing in a very hot shower, atomic fireballs (a hot, hard candy) and an herb tea called ThinkO2, help, just a little. I have very few pain free days. I am now at the point where I dread a pain free day. While they are glorious days, to feel so wonderfully good, it never fails that within 24 to 30 hours I will have one Monster of a headache. At least when in pain all the time, more pain is just another day in the life. A day without pain brings home the fact that a bad CH is a thing to be feared. I have found that durning my really bad bouts, that I have seriously cut myself and brused myself, and had no recollection of it at all. Anyone else notice that a boxing match is also called a "bout"? I am rambling now, and if you got to this point, thank you for reading! |
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Title: Re: The shock of finding you are not alone Post by Dragnlance on Feb 5th, 2006, 1:03pm I was just reminded that Red Bull will help too! |
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Title: , firoriRe: The shock of finding you are not alone Post by Guiseppi on Feb 5th, 2006, 1:41pm Have you tried oxygen yet? Read the link to the left on how to use it correctly. I too went thru the hydrocordone, (think that's spelled right), codeine, midrin firoinal etc. path. I found this website and it radically changed my life. I'm a year younger then you, had these since about age 17 or 18. The oxygen is a great tool cuz side effects are almost nil and it stops the beast in its tracks for many. I have to back my oxygen up with cafergot or the head ache returns, most use just oxygen. Read, read, read everything on this board, educate your doctor. Good luck in finding relief and welcome to the most eclectic, interesting, loving bunch of people on the planet. Guiseppi |
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Title: Re: The shock of finding you are not alone Post by Dragnlance on Feb 5th, 2006, 2:02pm Hi, I have used O2 with great results. Money is the problem there. My insurance has a 750 deduct, and I pretty much get to foot the whole bill. We simply cannot afford it. Typical of the medical insurance, they get the money but will not spend it. As you have guessed, I am on the hunt for some cheap alternative that might help, since I know I cannot count on insurance to do anything except take my money. |
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Title: Re: The shock of finding you are not alone Post by Jonny on Feb 5th, 2006, 2:08pm Rent a tank of welding 02 and I will send you a regulator and a mask that will fit the tank. Free of charge! |
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Title: Re: The shock of finding you are not alone Post by LeLimey on Feb 5th, 2006, 2:20pm O2 is about the best stuff I have found for aborting hits. What other meds are you using/ have you used? The more we know about what you have tried and what has or hasn't worked the more we can help. None of us are doctors but we have a great deal of experience and can share that with you at least. If nothing else we're all in this boat together! Welcome to the family :) Helen |
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Title: Re: The shock of finding you are not alone Post by Bob_Johnson on Feb 5th, 2006, 2:20pm MANAGEMENT OF HEADACHE AND HEADACHE MEDICATIONS, 2nd ed. Lawrence D. Robbins, M.D.; pub. by Springer. $49 at Amazon.Com. It covers all types of headache and is primarily focused on medications. While the two chapters on CH total 42-pages, the actual relevant material is longer because of multiple references to material in chapters on migraine, reflecting the overlap in drugs used to treat. I'd suggest reading the chapters on migraine for three reasons: he makes references to CH & medications which are not in the index; there are "clinical pearls" about how to approach the treatment of headache; and, you gain better perspective on the nature of headache, in general, and the complexities of treatment (which need to be considered when we create expectations about what is possible). Finally, women will appreciate & benefit from his running information on hormones/menstrual cycles as they affect headache. Chapter on headache following head trauma, also. Obviously, I'm impressed with Robbins' work (even if the book needs the touch of a good editor!) (Somewhat longer review/content statement at 3/22/00, "Good book....") HEADACHE HELP, Revised edition, 2000; Lawrence Robbins, M.D., Houghton Mifflin, $15. Written for a nonprofessional audience, it contains almost all the material in the preceding volume but it's much easier reading. Highly recommended. http://www.headachedrugs.com/pdf/HA2005.pdf Read all the material, even sections on migraine. Material which important to cluster folks is sometimes also common to migraine. Explore the site for other materials. ---------------- Here is a link to read and print and take to your doctor. It describes preventive, transitional, abortive and surgical treatments for CH. (2002) http://www.brightok.net/~mnjday/chtherapy.pdf |
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Title: Re: The shock of finding you are not alone Post by Dragnlance on Feb 5th, 2006, 4:00pm Jonny, you would do this??? I can quite honestly state that I am speachless. Partly due, I suppose to the monster clawing my brains out, but mostly due to utter surprise. I never expected anyone to offer anything except support and advice, especially to a new comer, and a stranger. Thank you. what an emotional mess. I hurt, am frustrated and depresses and at the same time, overwhelmed with your generosity and joy (?) at finding people who know what this thing in my head is. I think I mentioned that I dropped the meds that I was on about 3 years ago. I remeber being on Amitriptelene, and 2 others that I dont remember what they were, although the name of one I think started with a "C", and also was on Allegra D, as my doc stated that antihistimins often helped. At that time I was also on O2. I have tried the devices that emit electical pulses, aromatherapy, massage, and some others that my brain just can't bring to the surface at this time. Has anyone heard if Salt intake has any bearing? |
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Title: Re: The shock of finding you are not alone Post by Guiseppi on Feb 5th, 2006, 5:10pm Now you know why Jonny is the king. Guiseppi |
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Title: Dragnlance- Welcome Post by Richr8 on Feb 5th, 2006, 5:45pm Sorry to hear you are having such a tough time. It is great discovering you are not alone as I recently did also. Just spend a lot of time reading here and you will pick up a lot of tips. a few freinds, and have a chance to interact with a community that totally gets it. It looks like you have received some great tips and offers already, so I would just suggest that you spend some time here researching the latest treatments, the OUCH website (Link on left), and sharing your experiences wtih others. I don't know where you would find more inofrmation on this topic anywhere, or a more knowledgeable or helpful bunch of folks. And the lights are always on, |
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Title: Re: The shock of finding you are not alone Post by BobG on Feb 5th, 2006, 5:53pm on 02/05/06 at 12:58:30, Dragnlance wrote:
Amazing isn't it? Welcome to the board Lance. |
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Title: Re: The shock of finding you are not alone Post by Dragnlance on Feb 6th, 2006, 11:06pm Now that I can think better. I was on Varapimil, Topomax, Amitriptilene, Allegra, and one other that I still cannot remember.. I quit all cold turkey. I remeber the 3rd after I quit, suddenly the world was bright and clear, and I could think again!! I had no idea I was THAT fogged out. I am reading that Topomax does that to a lot of people At this point, I take nothing, not even O2, except for the stuff I mentioned in my other posts. I am quite tired of meds. I wish, I would be like a friend of mine, who states he might get a single headache a year and 2 asprin kill the pain in 15 minutes. He has no idea how I envy that. |
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Title: Re: The shock of finding you are not alone Post by E-Double on Feb 6th, 2006, 11:17pm Welcome aboard new friend. An amazing feeling huh!? I'm almost off all of my meds for no other reason but being tired of it. I still have daily attacks but figured after 2 yrs on these meds, I had enough. I actually feel a hell of a lot healthier despite the hits and lack of sleep. Be well and here 4 ya day and night! Eric |
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Title: Re: The shock of finding you are not alone Post by MJ on Feb 7th, 2006, 12:42pm on 02/06/06 at 23:17:27, E-Double wrote:
Good for you EE. and Dragn. Sometimes the best meds are a break from the meds. 10 or so years ago I too stopped the meds, makes a huge difference. I am not advocating med free for anyone, but it leads to a clearer vision and mental grasp of pain. |
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Title: Re: The shock of finding you are not alone Post by dacluster on Feb 10th, 2006, 8:15pm Hello, My name is Dave. I have read a lot about cluster headaches, written by a lot of different people, but still do not understand all of the different ways people use to stave them off. I have these headaches in seasons, like most everybody else, and am in one of those seasons right now. I have been having cluster headaches for about 17 years (15 years longer than the people at the Veterans Admin. Hospital said I should) and still don't know how to deal with them. I am hoping for some kind of advice that I have not tried yet, but the amount of things I have tried could only be counted with a good scientific calculator. All I have is the idiotes at the VAMC, and their all (no) knowing medical prowess to fall back on! |
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Title: Re: The shock of finding you are not alone Post by Dragnlance on Feb 10th, 2006, 9:29pm Hi Dave, Sorry you had to come looking for this place, but Welcome. O2 is considered the best abortive, but must be used correctly. (see links to left). I am going to copy a post I made earlier today... I quit all drugs nearly 3 years ago now, because they were ineffective. At no time did I EVER get more than 2 pf days in a row. Really no differnt now. While chronic, this week has been worse than it has been for some time. (no changes in life style ect.) Anyway, I found this site last week. I found a lot of comments on the herb "Kudzu", so I bought some. Since I am drug free, I really am a good test subject. I took the firs pill Tuesday afternoon, about 2:30 pm. (I took off from work because they were so bad tuesday) At 3:30 pm (almost exactly) the current headache snapped. I jerked, and my wife asked what was wrong. I looked at her and told her the monster disappeared. Now, understand, this headache was only an hour and half into the torture, and they ALWAYS last 3+ hours. This is a constant. Never, and I mean NEVER are they less!! Well, the break was only 15 minutes before the monster came back, but what a shock. Since then I get my usual, 4 AM, 10AM and 3PM and 7PM killers, BUT, in the last 2 days, the pressure behind my eye, and the burning in my tell me it is going to kip 9 or 10, and I prepare, and it doesn't go beyond kip 6. Today has been a long one because I have only had 2 breaks from the monster, but I have not gone over 6 again today. The pressure behind my eye right now says I should be trying to crush my own skull, but I can actually sit here and tell you about this. While this is only the 3rd day on this, I am staring at the bottle of Kudzu in wide-eyed wonder, as this could, I hope be part of my salvation. I dont believe for a second that it will stop them all, and I also know that I need to get some O2 as a second defense. I understand there are issues with Kudzu and things like Verapamil, BUT, if you can, you might want to look at this. Wishing you ALL PAIN FREE DAYS and NIGHTS Dragnlance |
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Title: Re: The shock of finding you are not alone Post by dacluster on Feb 11th, 2006, 12:09pm Hey, I do appreciate your advice! I tried O2 about 5 years ago, and it didn't work. It only made them worse. I came to this site because I get no understanding from my only medical providers, the VA, and my wife is losing her ability to cope with the constant headaches. I guess that it is good that there is somebody out there who understands what I go through. I get the migraines, but they don't bother me anywhere near as much as the CH's. I don't even take meds. for them. The only thing I know how to do is roll with the punches and hope that one day, these things will either kill me or go away permanantly. Don't get me wrong, I would rather get rid of them, but I don't see how. Too many times, I have dealt with nurse practitioners and PA's, simply because the VA does not believe in assigning real doctors to thier charges. These NP's and PA's all have different ideas about what a CH is, and even if they really exist, but not a one of them has ever gone out to look for web sites like this one, or thought about consulting with a real neurologist. We have one at the VA, a neuro-surgeon, but he is about 70 years old, and refuses to even believe that there is such a thing as a CH. He is too busy trying to push me into allowing him to perform surgury on my back to admit that I have this issue! By the way, add this to your knowlege base. I don't just get one bloodshot eye. If the CH gets above level 8, capillaries in that eye burst and leave big patches of blood in the white area of that eye and my nose bleeds. Other than that, everything else I have read on this site is exactly the same. Sorry, I have probably complained your eyes off, but I sometimes go overboard when I vent, and I vent to get things off my chest, and I get things off my chest to relieve tension so that there is not anything adding to the pain when I get a CH. |
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Title: Re: The shock of finding you are not alone Post by Dragnlance on Feb 11th, 2006, 8:07pm Dacluster, Vent all you want. That is what this site is for, learning, helping and venting. By venting, we all learn that some of the frustrations we have are felt by others in this boat. Read thru the info on this site. You may run into something that you have not tried or thought of. There is so much info here and more posted every day, it will take a while for your dragnet to find something that may help. PFNAD!! Dragnlance |
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Title: Re: The shock of finding you are not alone Post by dacluster on Feb 14th, 2006, 11:21am DL, You seem to pretty knowlegable about this stuff! I seem to fall into both catagories, Chronic and Sporatic. Have you ever heard of this before? D! |
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Title: Re: The shock of finding you are not alone Post by Dragnlance on Feb 14th, 2006, 10:58pm Dacluster, I know what I have been thru, and have tried so many things that by trial and error, I know what does and does not work for me. Until I got here, I was so alone, and what I know about various headaches comes from reading books. There are a lot of people on the site here with much more knowlege than I Let's put a separate thread out and see what we come up with, because I honestly don't have an answer for you. Dragn |
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Title: Re: The shock of finding you are not alone Post by Dragnlance on Feb 14th, 2006, 11:04pm new thread started under cluster headache specific heading ;;D |
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