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        New Message Board Archives >> 2006 General Board Posts >> News...With Nobody To Tell
        
(Message started by: Asia on Nov 7^th, 2006, 12:23am)

Title: News...With Nobody To Tell
Post by Asia on Nov 7^th, 2006, 12:23am

I have some really good friends and a great soul mate who all try to be supportive and understanding...but sometimes I feel like all that ever comes out of my mouth is, "And another thing about my head..."

I want to tell myself to shut up because I feel like I'm driving those around me nuts. Usually, HA free, I'm an interesting person, I think. I love to talk and debate, I'm a writer, I'm creative...but yeah, all that goes out the window when my eye starts to droop.

So I find this site called ClusterHeadaches.com, and I wanna tell everybody that hey, there are people like me! I'm not the only one who goes to the ER and feels like everybody thinks I'm a crackhead. I'm not the only one who has everything to live for, but in those hours, death would be being able to finally rest. I'm not the only person who's life can get interrupted - and for me, stopped - when it's Headache Time.

Now, when I disappear and friends and family ask where I've been, I say "My headaches are back" and I get this "Ooohh," that makes me want to shake them and say, "Yes, they're real. No, I'm not just sitting at home with an aspirin watching Oprah with a cold compress." I'm afraid to leave my house because I don't want to be someplace where it will be hard to deal with them. I don't want people to see me and judge me. I quit jobs that I know can only be so understanding about absences. I get very broke. I think it's not fair. But I keep going.

So I guess I just wanted to tell somebody that I found a place that understands. Even if I don't get to see a doctor soon, and I have to just pray that what I do have and what I've found here to try works, I at least have a place to go. A place in which I don't feel like I HAVE to explain myself. Somebody knows it's real.

Yeah, I'm just venting while the "shadow" lurks over my eye, but I don't care. This feels GOOD.

Asia

Title: Re: News...With Nobody To Tell
Post by jon019 on Nov 7^th, 2006, 1:17am

on 11/07/06 at 00:23:40, Asia wrote:

I have some really good friends and a great soul mate who all try to be supportive and understanding...but sometimes I feel like all that ever comes out of my mouth is, "And another thing about my head..."

It's a tough tightrope to walk. Myself, I say nothing about my head unless its brought up by someone else and I feel like they are sincerely concerned and interested. Have found it better than enduring the "yeah, I know exactly how you feel", or "I had one of those once", or 'yeah, but it's just a headache". The support of friends and a soulmate can be critical. Don't make them mind read, be honest, but take your cues from them about how much info they are able to process. Show them the friends and colleagues letter and see how it goes from there.

http://www.ouch-us.org/chgeneral/colleagueletter.htm

So I find this site called ClusterHeadaches.com, and I wanna tell everybody that hey, there are people like me! I'm not the only one who goes to the ER and feels like everybody thinks I'm a crackhead. I'm not the only one who has everything to live for, but in those hours, death would be being able to finally rest. I'm not the only person who's life can get interrupted - and for me, stopped - when it's Headache Time.

Been there, been WAY there. You will find lots of us who have written, or felt EXACTLY what you said above. That's why we are here and now that is why you are here.

Now, when I disappear and friends and family ask where I've been, I say "My headaches are back" and I get this "Ooohh," that makes me want to shake them and say, "Yes, they're real. No, I'm not just sitting at home with an aspirin watching Oprah with a cold compress." I'm afraid to leave my house because I don't want to be someplace where it will be hard to deal with them. I don't want people to see me and judge me.

You have said this better than I ever have been able to, and I've lived exactly what you said.

I think it's not fair. But I keep going.

Now THAT'S what is going to get you somewhere. That and being here.

So I guess I just wanted to tell somebody that I found a place that understands. Even if I don't get to see a doctor soon, and I have to just pray that what I do have and what I've found here to try works, I at least have a place to go. A place in which I don't feel like I HAVE to explain myself. Somebody knows it's real.

You betcha we do. Now, read EVERYTHING in the links on the left, follow the threads, ask when you don't know, support the other folks here. Welcome aboard, you're home!

Yeah, I'm just venting while the "shadow" lurks over my eye, but I don't care. This feels GOOD.

Don't it though! Vent when you need to, it does feel good.

Regards

Jon

Asia

Title: Re: News...With Nobody To Tell
Post by georgej on Nov 7^th, 2006, 1:23am

Welcome Asia,

You're right--you've come to a place where the people really do understand what you're talking about, and what's more, are more than happy to talk about it. ;)

So--if you're concerned that you're boring those close to you, be assured that we're NEVER bored by the topic here, and there's always someone to talk to and--yes--vent to about your headaches. 24/7.

If you will, tell us a little more about your headaches and how they present--could be that some of us may be able to steer you in some directions that you haven't explored in order to control them a bit better. What medications, if any, have you been taking?

Again, welcome--and pull up a chair.

Best,

George

Title: Re: News...With Nobody To Tell
Post by Charlie on Nov 7^th, 2006, 1:37am

Welcome aboard and you are definitely not alone. We're delighted to meet you but sorry the reason for it is because you have to deal with this horror.

You'll find lots of people that know exactly how this thing affects everything you do. You'll also find a lot of good ideas on how to handle the beast and support. We welcome rants on most any topic as well

Here is one technique that worked for me:

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. I do know that 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. It can described as a conscious circulatory flexing. Increased circulation will result in a reddening and warming of the hands. Try to think of it as filling your hands with redirected blood. The important and difficult part is that it has to be done without interruption through the pain. Do not give up in frustration. It may not work on the first try. Every now and then it will work almost immediately. I lived for those moments. 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 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 have had about a 75% success rate shortening these attacks. My 20 minute attacks were often reduced to 10 minutes or less. Once proven that I had a chance to effectively deal with this horror, I always gave it a try as I had nothing to lose but pain.

Perhaps it will help if you think of it as trying to fill the arm as if it is were an empty vessel. 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. This may be similar as it draws some circulation away from the head. 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. So long as you do not slack off, this has a chance of working.

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. It gives us a fighting chance.

Charlie

Title: Re: News...With Nobody To Tell
Post by AussieBrian on Nov 7^th, 2006, 3:00am

G'day, Asia, and welcome home.

Title: Re: News...With Nobody To Tell
Post by Asia on Nov 7^th, 2006, 7:17am

Thank you a million times over...

About My Broken Head:

I stated in another post that they started when I was about 12 (33 now). I'm female, and otherwise healthy.

This cycle, the headaches switched to the right side. I usually know when they're starting from pain above my eye, and that first teardrop says it's the real thing and no longer a maybe. I feel it around my eye, temple, cheek, and feels like I have a toothache (which is also very possible in conjunction with the HA). They take about 5-10 min to hit hard, so I spend that time "gearing up"...ice and water in a zip lock, or a pre-refrigerated bottle of water to roll around my face.

In a 10, I have to sit somewhere that I can extend my leg (corresponding side) because I feel the pressure in my head if I place my arm or leg wrong. It also hurts if someone touches that arm. I can't always use that arm to hold anything for the same reason.

While my eye waters, my nose runs constantly - hurts to blow - and it's hard to talk easily only because the mouth movement agitates the HA. I don't get nauseous...mucus drains into my throat, however, which is uncomfortable.

Depending on meds and the stage within that cycle, they can last 1 hour to 6 at the longest...I will rarely get more than one a day. It seems when I take a lot of meds, after a week or two, I start to get a HA after the HA that lasts all the time - feels like a muted CH, more aggravating than excrutiating. When it gets like that, however, it's hard to function because I feel like I can't get that break.

Depending, again, where I am in the cycle. CH may come on waking, full blown. Seems like this is always only in episodes, for about a week. Normally, it is every 20 hours...hard to explain...I may get them in the mornings, and it slowly shifts to an evening time.

I was only diagnosed correctly by a specialist in New Orleans about 4-5 years ago. Unfortunately, I don't know where she is now after the storm. I've taken Imitrex, Propanolol, Maxalt, Hydrocodone, Demorol, Oxycodone, Prednisone (but I think the cycle stopped before I got to see if it worked), Naproxen (a joke, when they thought it was my sinuses), Topomax, Percocet, Fioricet, Toradol, Midrin and Relpax. The only meds that seem to abort consistently (90%) were Maxalt and Zomig.

Unfortunately, I have no insurance right now, so Maxalt and Zomig get out of my reach when I can't get samples and get broke *smile*. I've had oxygen in ERs, but I can't say how well it worked because it was usually accompanied by Morphine, Demoral, Toradol, etc. I'd like to try to get the tank.

I'm working on Medicaid, then to get to a doc that will give me a regimen of preventatives rather than the painkillers...I can't stand taking all of that crap. Now that I think I'm at the end of the cycle, I get more shadows and only a couple of 9-10s a week, and I am just fighting thru with whatever I have. Also in a previous post, I pleaded with an ER doc for Prednisone...he didn't know jack about CH, so he didn't even give me instructions. So I have those, 20mg per tab, 2x daily, hoping that's correct and will help to break this cycle. Hate self diagnosing, but I have to do something.

Think that's it...if you have any questions, comments, or suggestions, PLEASE feel free. I am on here and reading as long as my eye stays open!