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

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.

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I've given birth 7 times and that is correct..it's worse.

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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.

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

Adam D. wrote on Sep 15^th, 2010 at 9:42am:

If tea works for you maybe you just have a headache.

         Potter

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.   

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:

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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.

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".

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

Damn. Careful. Linda is pretty tough 

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

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.

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:

Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or

The section entitled "Building Wisdom and Gaining Respect" would have gone a very long way in diffusing this situation.

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