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Daily Chat >> General Posts >> Long time sufferer... http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1284262285 Message started by Adam D. on Sep 11th, 2010 at 11:31pm |
Title: Long time sufferer... Post by Adam D. on Sep 11th, 2010 at 11:31pm
I have been dealing with cluster headaches since age 19. It has been nearly 20 years of dealing with relapsing/remitting episodic cluster headaches with a couple stretches of chronic(longest of 2 years).
In looking at symptoms listed on the Mayo Clinics website I have self diagnosed myself. Drooping eye(and occasional involuntary facial contortion), swelling around eye, deep redness of the eye, pressure on the eye(occasionally the ear as well), nasal congestion and dripping... all this without mentioning the debilitating pain we all have come to fear. I have regularly said, "It is like something is trying to push my eye out from the inside." Recently, I have gone to comparing the acuteness of pain to that of a "brain freeze"... that doesn't go away in a few seconds. My headaches have generally been on my left side. Recently after an unorthodox treatment I had a "side switch". Initially I didn't make the connection between the treatment and the side switch. But, six days ago I remembered that the side switch coincided with the treatment. So, in the midst of a right side head splitter I repeated the treatment... I used saline solution used for contact lenses to lightly irrigate my left sinus cavity. The next time(two days later) I had a headache it had switched sides. Two weeks later, hoping the switch wasn't merely anecdotal evidence, I tried the same thing with my right sinus cavity... since that treatment I have had 5 PFDAN. Of course I have no idea if the saline treatment was the cause of the cessation of my headaches as I have suffered episodic cluster headaches and know full well it could be a simple coincidence. I do however know nothing in my near 20 year experience has had as dramatic an affect as this saline wash has. Perhaps my clusters are symptoms of low grade sinus infections and the saline wash has done away with the infection. At any rate, it seems to have worked for me. |
Title: Re: Long time sufferer... Post by Callico on Sep 12th, 2010 at 12:35am
I'm glad you got relief, but I'm also glad you didn't tout it as a cure! You may get some flack for that, but don't let it bother you.
Unfortunately you have had the same experience many here have had of having to find the diagnosis for themselves. I do strongly suggest you have a knowledgeable HA specialist confirm your diagnosis, but from here it looks like CH to me. Sorry! The first thing I would direct your attention to is the oxygen info button to the left of your screen in yellow. Read it, print off the pertinent info to take with you to the Dr, and if possible get a script for a higher flow rate than 15 lpm. There is a lot for you to read here. Please feel free to ask questions as they come up. Many of them have been answered before, but many had been answered before I asked them several years ago too. There is to much here to get it all, so while doing your homework ask away. Welcome to the family you wish you never knew! Jerry |
Title: Re: Long time sufferer... Post by Linda_Howell on Sep 12th, 2010 at 9:30am I also diagnosed myself 23 yrs. ago...but after that I immediately went to a well-known Dr. who treats CH and got a formal diagnosis. I really believe you should also to rule out anythng more sinister as well as to start you on a abortive and preventative treament plan. The contact lens solution in your nose most probably didn't cause the HA to switch sides. Many of us have them swtich sides for no apparent reason at all. It means nothing, according to Dr. Goadsby |
Title: Re: Long time sufferer... Post by Adam D. on Sep 12th, 2010 at 4:39pm Thanks for the responses Callico and Linda. Callico, as excited as I am about being pain free(my last episode was getting pretty close to the chronic threshold which I understand to be 1 year) I fully expect to have a new episode start tomorrow. At this point, sick as it may sound, I am actually looking forward to my next so I can test the saline wash again. By some weird fluke I am a masochist(weird I know, but nonetheless true) who ended up with a condition I have read is considered by women to be more painful than childbirth. Interesting that I don't enjoy the pain from CH, but then again it is an other worldly pain. As for seeing a Dr., I simply can not afford it/do not have insurance. Heck, I had never heard of cluster headaches until Saturday night watching the "House" marathon on Bravo. A quick google search and in about 10 minutes I had diagnosed myself as having nearly all the symptoms - including alcohol as a trigger. As many times as I had tried to figure out what was going on I had never run across the term Cluster Headache, but then, of course, I was looking for migraine or sinus headache. At any rate, I will be dealing with CH sans traditional treatment/pain management for the rest of my life. 6 PFDAN and hoping everyone suffering can find at least one. |
Title: Re: Long time sufferer... Post by Brew on Sep 12th, 2010 at 4:49pm Quote:
Best of luck with that then. |
Title: Re: Long time sufferer... Post by Linda_Howell on Sep 12th, 2010 at 8:17pm Quote:
I've given birth 7 times and that is correct..it's worse. Quote:
Why in the world would you settle??? especially when there are treatments like 02 that is cheap, safe and works? Look into welders 02 please. No prescription needed. |
Title: Re: Long time sufferer... Post by Charlie on Sep 13th, 2010 at 8:51am
One thing to know is that a neurology exam is about the most boring thing in medicine. Nothing invasive nor very interesting. Helpful sometimes, though.
Quote:
Don't do that. Don't do that for much of anything. Charlie |
Title: Re: Long time sufferer... Post by Guiseppi on Sep 13th, 2010 at 11:15am
Look at the oxygen info link on the left, specifically welders 02, cheap, no prescription needed and abort times run less then 10 minutes,
clusterbusters.com alternative therapies outside of the legal/medical circles which have proved suprisingly effective for our more serious CH'ers. Joe |
Title: Re: Long time sufferer... Post by Adam D. on Sep 15th, 2010 at 9:42am
My abort times using hot tea aren't much longer(generally 20 minutes) than what I have read people using O2 see. Feel one coming? Water in the microwave 1 min 48 seconds. Steep tea 1 min. Leave bag in while drinking the tea. HA gone - regularly before it gets a good hold.
When I wake up with a HA, which is rare, it can be a bit of a problem as I didn't catch it early, and from what I have read on the O2 page that is a problem for O2 users as well. Apart from that, while O2 may seem cheap to those of you who have been spending tons of money on Rx drugs over the years the fact remains that financially I am in no position to spend money on O2, particularly at the usage rates I have been reading. 15lpm for 20 minutes = 300l I have seen an M tank mentioned as having about 3400l. Unless there is something I don't understand about volume of pressurized gas in a cylinder that works out to 11 attacks which could easily be burnt in 3 days(or less). That is not something I could afford 8 or 10 times per month - that's where I am financially. This doesn't even take into consideration the start up costs I have read about - tank lease, suitable regulator, and suitable mask(intake device). While I appreciate the suggestion(s) and am ecstatic it works for you, the tone of some of the subsequent posts leave quite a bit to be desired for a support group. Perhaps it is a misunderstanding, but comments like "Yeah, well good luck with that." and "Why would you settle?" really don't sit well considering I have mentioned, albeit only loosely for decorum sake, my finances... "I can't afford to see a Dr". |
Title: Re: Long time sufferer... Post by vietvet2tours on Sep 15th, 2010 at 9:49am Adam D. wrote on Sep 15th, 2010 at 9:42am:
If tea works for you maybe you just have a headache. Potter |
Title: Re: Long time sufferer... Post by Brew on Sep 15th, 2010 at 9:59am Adam D. wrote on Sep 15th, 2010 at 9:42am:
You did not ask for any help - therefore, take all subsequent advice for what it's worth. It's all free. I'm not sure if you came here for support or just wanted to strut a bit with a chip on your shoulder. Good luck with your tea. |
Title: Re: Long time sufferer... Post by Linda_Howell on Sep 15th, 2010 at 10:18am
Charlie and I said why would you settle, because none of us here want to see anyone in unnecessary pain when a lot of it can be avoided so easily. If you call that unsupportive...so be it. ::)
|
Title: Re: Long time sufferer... Post by Charlie on Sep 15th, 2010 at 5:44pm
I've had a lot of experience with neurologists and most of those I met have been interested in CH and sometimes helpful. I'm also very much into letting science-based medicine work its best before exploring what may be iffy therapies. Now..........
That said, there is an odd-sounding technique that I've had some success with. I call it that because it is not a cure, and probably not scientifically demonstrable. That it can work is what matters. However, if you can afford professional care, I definitely suggest going there first. If not, maybe this technique is worth a shot. Here is what worked for me so many years ago and the price is right. Dr. Wright’s Circulatory Technique I am not sure what mechanism is triggered by this but whatever it is, at least indirectly helps kill the pain. This technique has nothing to do with meditation, relaxation, or psychic ability. It is entirely physical and takes some work. It involves concentrating on trying to redirect a little circulation to the arms, hands, or legs. Increased circulation will result in a reddening and warming of the hands. As silly as it sounds, try to think of it as filling your hand with redirected circulation. The important part is that it has to be done without interruption until it works. Do not give up in frustration. It may not work on the first try. Sometimes it can work quicky but it almost always worked after a time. Try experimenting between attacks. You will find that it gets easier with practice. I was given less than five minutes instruction in the use of this method. The doctor, while placing his arm on his desk, showed me that he could slightly increase his arm and hand circulation. After several attempts, I was able to repeat this procedure and use it successfully. I had about a 75% success rate shortening these attacks. My 20 minute hits were often reduced to 10 minutes or less. Once proven that I had a chance to deal with this horror, I always gave it a try as I had nothing to lose but pain. I used to try to imagine I was pushing blood away from my head into my arm. Use your imagination. There is one man who wrote that his standing barefoot on a concrete floor shortened his attacks. I believe this draws some circulation away from the head and it sounds good to me. Cold water, exercise, or anything affecting circulation, seems to be worth a try. My suggestion is to not let up immediately when the pain goes. Waiting a minute is probably a good idea. This technique is very useful while waiting for medication to take effect or when none is available. It costs nothing, is non-invasive, and can be used just about anywhere. It is not a miracle but it helped me deal with this horror. It can be a bit exhausting but the success rate was good enough for me and a cluster headache sufferer will do just about anything to end the pain. I hope this technique is helpful and I wish you the best of luck. Charlie |
Title: Re: Long time sufferer... Post by Adam D. on Sep 17th, 2010 at 1:59am
Charlie, (apologies for being "longwinded")
It would seem I have been unknowingly using that technique since I was a kid. At age 8, I was on the playground at school playing some touch football(asphalt playground so tackle was not an option). While playing as hard as we could and still respecting the touch rule of the game there were inevitable occasions where people got knocked down or fell down. It happened to me and I broke the main incisor on the top left side(that big tooth right up front) in half. At the dentist later that day after some discussion about course of treatment(temporary cap until adolescence) the novocaine shot right into my gums and the drilling. At some point, the dentist asked if I still felt the drilling he was doing, and unfortunately I was and said so. Back to the novocaine needle - it was at this point that I realized that the sharp pain of a needle to the gums was worse than the pain of the drill. So on future trips to the dentist for cavities and later extraction of a wisdom tooth I informed the dentists/dental surgeons that I didn't need novocaine or gas. Of course this was regularly met with disbelief. I assured the dentists I would be fine with the pain. But, what I didn't say was, "I likely won't feel a thing." I didn't say it, but it was how it had been since I was 8. The last time I had a cavity drilled and filled(age 18) it was with a new dentist. The lady was adamant that she was going to have to drill pretty deep into a molar, and said I would be jumping around. Fact was she was the one who was jumpy. I actually had to tell her to relax and do her job as if she had given me a shot. She was amazed that I never made a peep or even flinched. All that said, I don't know why my body hasn't done this on its own during CH attacks. Heck, maybe it does, and that is why hot tea seems to be effective. I will definitely work on trying to develop the skill. I was aware it was possible to consciously redirect blood flow(lol watching shows on sniper training) I never thought of it being a possible pain relief mechanism. Thanks for opening my eyes to another possible weapon for fighting the beast. Looking a little closer at your post I noticed: Quote:
The act of elevating the legs above the heart, like when in a dentists chair, automatically increases circulation to the legs so maybe that is why I have had little trouble dealing with the pain of dentistry. Between concentration and elevating my legs during an attack I may very well have an additional tool in my bag. Thanks again for the insightful and potentially very helpful post. |
Title: Re: Long time sufferer... Post by Adam D. on Sep 17th, 2010 at 4:29am
Against the advice of my girlfriend and my better demons...
viet, "If tea works maybe you just have a head ache." Was this your response when people first touted the efficacy of energy drinks in assisting aborts as well? After reading as much as I have been able to read around here I am as surprised as anyone that hot tea works for me, and I am even more surprised that the happy accident of finding it ever happened. If I have learned only a single maxim since I have been submersed in learning here and at CB it is: the beast is different for everyone. Doubt that it(hot tea) works for me, but please don't doubt my pain - had enough of that ignorance throughout the years from people who have no idea what it is like... people who presumably love/care about me and actually see how it affects me. Heck, I don't know why it works for me; placebo(though the 15 years or so that it has helped seems to discount placebo), caffeine and anti-oxidants commonly found in tea, the heat? I don't care; all I care about is it seems to work for me. 98%(370 of 378) of the time(only 10 calender months of HA journal - 396 HAs over 277 days) it works faster than the most common length of my untreated/unsuccessfully aborted HAs(45 to 60 mins). Of my 396 HAs, I treated 378 with hot tea. Of those 378 HAs, 370 were aborted in 20 to 23 minutes from the first sip of tea. The 8 that didn't abort with tea all lasted between 45 and 60 minutes. Of the 18 untreated HAs 16 lasted between 45 and 60 minutes, 1 lasted 90 minutes, and one was just over 2 hours. Thanks for pushing me to a more thorough statistical analysis, pretty interesting stuff. It is possible you are onto something. Maybe 93%(370 of 396) of my HAs only last about 20 minutes, and the tea does nothing at all. Though, from memory, this doesn't fit with the length of HAs(45 to 60mins) during the 4 or so years prior to finding and using tea as an abortive. Certainly something I will try to look more closely at during my next cycle, but it isn't likely, for obvious reasons, that I will choose to just suffer through a bunch of HAs in the interest of science. Brew, No chip on my shoulder. I am pleased as punch with my life and the people and things in it. I may face some fairly extreme financial realities, but I am, if nothing else, happy in my destitution. I didn't insult you or anyone else here. I was giving some constructive criticism because if a newbie is treated like this regularly around here you won't have many staying. I'd say that pretty much defeats the purpose of this place. No I didn't ask for help, but then a support group isn't always about asking for and receiving help. Quite often it is simply having people to listen, share experiences, and ask questions in an attempt to better understand a shared problem. I shared a small portion of my experience, and sarcasm was one of the responses... if sarcasm is considered supportive I must have misunderstood the definition of both support and sarcasm. I notice you, nor anyone else, asked what I would do "without traditional treatment/pain relief" or, for that matter, what I have been doing all these years "without traditional treatment/pain relief", but you were quick to post, and were obviously comfortable posting, a completely dismissive sarcastic reply(twice) that helps no one. That being the case, one wonders why you even bothered to post at all. As far as strutting... I am not here looking to impress anyone. I was excited about being pain free for more than a day (rarely two) for the first time in nearly 300 days, finally finding a name for what I have been dealing with all these years, and finding a place with people who understand the pain and fear involved. If that or my reaction to some, frankly, questionable behavior for this environment is what you want to call strutting then I guess I am guilty. To cast aspersions as you have: I don't know whether you are just a sarcastic, insensitive person by nature, or if you are merely projecting/transferring your bitterness onto me. This is fun... I can see why you resorted to it in your defense. That pointing out your insensitivity lead you to making this personal, by resorting to insult, says quite a bit about you. That your response to constructive criticism is to become defensive is another issue altogether, but, then, I guess it takes all kinds. Linda, Going from "At any rate I will be dealing with CH without traditional treatment/pain relief." to "in unnecessary pain" is quite a stretch. It makes the assumption that, in nearly 20 years, I haven't found some non-traditional thing(s) that work for me. The other alternative is you think your way is the only way. In either case, it is obvious you responded to what you think my statement means as opposed to what I actually said. Yes, when finances had already been mentioned as an issue and followed with the quote you decided to focus on, asking "Why would you settle?" is quite unsupportive and bordering on obtuse. Not being able to somehow scratch together the money for a Dr., in all the years before I self-diagnosed or after I self-diagnosed, while dealing with the "most painful condition known to man" makes it fairly obvious my finances are extremely tight. At which point asking "Why would you settle?" feels more like a jab at my economic situation than constructive support. Assuming that which is cheap to you is a viable resource for someone else is quite presumptuous. Your "eye roll" aside, I accept I may have been overly sensitive in this regard. Do you accept you may not have been sensitive enough? I am bugetted very nearly down to the last dollar. I have been looking at "busting" because it offers the closest thing to a "cure"/long term cessation of CH, thereby being worth sacrifices(more rice and beans, less meat) in my day to day life. While I can get the 15 or so dollars for a spore syringe with a little effort/budget adjusting over the span of a couple weeks I am wondering where I will get the the additional money for the set up - cake jars, vermiculite, perlite, fruiting chamber, etc. Saving over the short term would seem to be the answer; the only problem with that is there is "always something" - for example: get a little bit ahead(emphasis on little) and the serpentine belt on my truck breaks(happened 3 weeks ago). Thankfully I can replace something that simple myself, but it was still close to $40 I could ill-afford to spend. Not playing a poor me/pity party thing here. Trust me discussing my finances, to any extent with my family let alone strangers, isn't something I enjoy or think is appropriate. Simply illustrating that my financial limitations are that acute on a month to month basis. FWIW, that, and the fact that I have found some very simple things that work pretty well for me, is why I would "settle". |
Title: Re: Long time sufferer... Post by Adam D. on Sep 17th, 2010 at 4:32am Mike NZ wrote on Sep 17th, 2010 at 3:06am:
Strange, in cases of poor circulation in the legs, diabetes for example, the common recommendation is to elevate the feet to improve circulation... at least that is my understanding. Edit to add: I guess the difference between elevated and elevated above the heart may be the issue. Thanks for correcting my misconception. Though, now I am back to wondering how I went pain free while getting my teeth drilled. lol |
Title: Re: Long time sufferer... Post by Guiseppi on Sep 17th, 2010 at 9:25am
Adam.....the difference between the "first aid" use of elevation and diabetes elevation! When we have a leg bleeder, we elevate it to reduce the blood pressure in the leg, then, combined with direct pressure and usually a pressure point we can slow the bleeding.
The diabetics are having trouble pumping the blood down to the legs, thru the legs...then the tough part....all the way back up to the heart. They elevate the legs just to get the blood back OUT of the legs. Your cardiologist will tell you that's why walking is so good for your heart. Incidentally...that WAS a long winded post you wrote! ;)...but I admire the way you responded to so many wihtout getting your "dander" up. The ability to civilly disagree is a trait I admire. Joe |
Title: Re: Long time sufferer... Post by LadyLuv on Sep 17th, 2010 at 11:13am Adam D. wrote on Sep 15th, 2010 at 9:42am:
Now you've gone and done it >:(... Don't you dare put the members of this group down (leave quite a bit to be desired for a support group.. )... Many of lives have been saved by this group (including mine).. And rather or not you have CH's or some other type of headaches... We are happy for you if tea work... we're happy for you if walking backwards work... Any information you receive from sufferers or supports on this sight is to help you, not to hurt you. We are a family here... and although we welcome all to our family... we're not about to let anyone cast a bad shadow on it... Peace & Blessings Ruthie... |
Title: Re: Long time sufferer... Post by Charlie on Sep 17th, 2010 at 7:56pm
Damn. Careful. Linda is pretty tough :o
Adam...these guys are on your side. Even though they treat me like dirt, they put up with me because I'm the sweetest old bashtard around here. Okay. The rants are done. Your move Adam. Charie |
Title: Re: Long time sufferer... Post by Brew on Sep 17th, 2010 at 9:57pm Charlie wrote on Sep 17th, 2010 at 7:56pm:
We love you, Charlie. You're just on the wrong side of the aisle. ;D And yes, you happen to be one of the sweetest old bashtards I know. |
Title: Re: Long time sufferer... Post by Brew on Sep 17th, 2010 at 10:04pm
Adam - Do as you wish. You're a big boy, and you've been around the block a time or two. I'll take your free advice the same as you should take mine.
|
Title: Re: Long time sufferer... Post by Linda_Howell on Sep 17th, 2010 at 10:40pm
Charlie, you crack me up. I'm not as tough as I pretend to be. Ask Joe. ;D
No one here treats you like dirt and you know it! You are among our most favorite people here and everyone loves you. Thank you Ladyluv...you hit the nail right on the head. :-* How anyone could miscontru this... Quote:
Adam one of reasons energy drinks work above plain tea is the caffeine content as well as the Taurine in it. They seems to work in tandem with very good results. I understand not being able to afford Dr.s visits etc. MANY here do not have Insurance and cannot afford their meds. 02 is cheap. One e-tank with no insurance costs me a lousy $10 As far as Imitrex etc. yes it is expensive as hell. I've been known to help people out with that. Even though you've had this for a long time you are new to this family and this site. How about we start all over and maybe we'll all have a better attitude???? Waddaya think? Linda |
Title: Re: Long time sufferer... Post by Adam D. on Sep 18th, 2010 at 3:39am
For those who have trouble responding to criticism without becoming defensive and would like to improve on this area in their lives, I found this link:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!! You need to ![]() ![]() The section entitled "Building Wisdom and Gaining Respect" would have gone a very long way in diffusing this situation. Quote:
|
Title: Re: Long time sufferer... Post by Kevin_M on Sep 18th, 2010 at 9:07am
Your signing on and off all morning, expecting a response? Well, due to your last post alone...
If thinking building wisdom in others or ways of gaining respect has been inherent in your posts, it can seem amusing while digging yourself a hole. Good luck with that. :) |
Title: Re: Long time sufferer... Post by Adam D. on Sep 18th, 2010 at 12:53pm Guiseppi wrote on Sep 17th, 2010 at 9:25am:
Thanks for clearing up my misconception(s). It's nice being wrong and learning from it. Assuming I am not mistaking sarcasm for a compliment(which begs the question, is blue font used to denote sarcasm in this forum?)... Thanks, I try to be as rational as possible. |
Title: Re: Long time sufferer... Post by Adam D. on Sep 18th, 2010 at 12:56pm Kevin_M wrote on Sep 18th, 2010 at 9:07am:
Nope, just working on a coherent and cogent response to Linda in my free time away from my "work desk" - so nice to be able to work from home. |
Title: Re: Long time sufferer... Post by his wife on Sep 18th, 2010 at 1:51pm Linda_Howell wrote on Sep 17th, 2010 at 10:40pm:
Linda, You are one classy lady [smiley=engel017.gif] |
Title: Re: Long time sufferer... Post by jon019 on Sep 18th, 2010 at 3:42pm
Damn good idea....
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Title: Re: Long time sufferer... Post by Charlie on Sep 18th, 2010 at 4:04pm |
Title: Re: Long time sufferer... Post by Agostino Leyre on Sep 19th, 2010 at 11:01am
I just wanted to add a side-note. Don't knock hot tea. It can help, just like hot coffee.
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Title: Re: Long time sufferer... Post by Callico on Sep 19th, 2010 at 4:01pm
Hot tea helps because of the caffeine content. Not as high as coffee, but particularly if you are one that caffeine affects more than some the caffeine in a cup of tea would be sufficient to do as much as a pot of coffee will do me. The difference energy drinks have is the taurene content that somehow supercharges the caffeine. Energy drinks normally only contain as much caffeine as a good cup of coffee, but the 1000 mg of Taurene makes it work much faster and more powerfully.
As to oxygen usage and times of abort: at 25 lpm I can abort a hit within 5 mins if I get to it before it hits a K6. Above that takes about 8. That is what I consider suffering needlessly. I went without medication for a number of years, several of them chronic. I learned all of the non-med routes. Three or more pots of coffee a day along with hot tea when the stomach wouldn't take any more coffee, but the $28 a month I'm paying to have O2 tanks in my living room allow me to work so much more effectively that they have paid for themselves many times over. You of course are free to do with our suggestions as you will. No one is trying to force you to do anything you don't want to do. Frankly the tone I'm hearing is that you don't want help. No one wants to force it on you, but you have just P.O.'ed some of the most knowledgeable and caring people I have ever had the opportunity to get to know. In fact, they saved my life. Were it not for them I would be dead. I was at the point of ending it when I found this place. You may do as you will, but don't mess with my family. Respectfully, Jerry |
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