I started having the headaches a few weeks ago... about 9-12am... 9-12pm and 4am...

Up until last night, I just thought it was a sinus thing, because I could feel the pain move from behind my right eye, towards my ear, and eventually down my neck, kinda like tube. And that side seemed stuffed up until it was over.

I have noticed it would hit when I went out drinking... Last night I had one in the club... I just kept walking and drinking water (It seems to help a bit.)... but aside from a little residual ache, I was ok after about a half hour.

When I went to bed it hit bad again... I don't know how long I slept... I don't look at the clocks... but it was back with a vengance... I jumped in the shower... (that seems to help too) ran it out of hot water and rocked on the couch like an autistic child until it passed.

I don't know what's happening. And I'm afraid to get diagnosed with something an insurance company might try to use against me. Even this site/forum... But I can't work and live like this.

If there isn't a real treatment... can I just handle this myself and avoid a label in my chart? I have to pay out of pocket anyway.

Edit: This hasn't been happening every day... sometimes twice or three times a day... then nothing for a day... then it hits again. It's not predictable.

Any advice would be appreciated, but I'm really hoping someone can give me an easy "out". Not that you aren't great people, but I can't take this as a way of life.

Hi Gundude.    First things first... get a diagnosis. You can't treat what doesn't yet have a name. Make an appt with a neurologist. A label on a chart is nothing compared to having to deal with this shit w/no help to fight it.

If it is clusters, then you'll get tools to help you control it. Yes you CAN live with this, you learn to live your life normally and function with ch.

One of the best "treatments" for ch is oxygen. Please read the posts on it to your left. Even paying out of pocket was far cheaper than traditional meds, and for most of us, o2 is far more effective in stopping an attack in its tracks.

Please see your doctor before you try to treat  yourself!

Welcome to the site :)

What Jenn said!
Get a diagnosis cause it might be something "severe" as well.

Oliver

I can get O2 and a regulator myself.

It isn't a matter of what you can get but a matter of what (condition/problem) you have.

So do yourself a favor and go to a neuro asap!

Oliver

Gundude wrote on Jan 1^st, 2009 at 4:57pm:

I can get O2 and a regulator myself.

yeah you can.   You can also go to the doctor and find out first what's wrong with you.  If I may be so bold, ss there some reason you can't?

1 I hate Dr.s who think you're making it up, and between "events" I'm fine.

2 No insurance.

3 I'm afraid with a diagnosis like this, I won't be able to get any later.

I thought I was fine after being ok for two days in a row. Last night/this morning was as bad as it has ever been.

I've broken bones....
...this is worse.

Welcome GunDude...

You've been given the best advice there is. See a doc and find out for sure what's going on. There are other conditions that CAN mimick Clusters and you should have a doc rule out anything else. In your first post you said you thought the pain was from sinuses, so a self diagnosis isn't the way to go.

If indeed you do have clusters, there are many weapons available that will help in the fight against them. It doesn't have to be a "way of life" and it's certainly not scarlet letter in your medical files.

Bill

Gundude wrote on Jan 1^st, 2009 at 5:18pm:

1 I hate Dr.s who think you're making it up, and between "events" I'm fine.

 Neurologists deal with this all the time. Some suck, some don't. go here: START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE  Its a list of Dr's who are well-informed on ch.


Gundude wrote on Jan 1^st, 2009 at 5:18pm:

2 No insurance.

I've had many cycles with no insurance.  


Gundude wrote on Jan 1^st, 2009 at 5:18pm:

3 I'm afraid with a diagnosis like this, I won't be able to get any later.

You can get it later. ch doesn't make you uninsurable. It may make you have a "pre-existing condition" that you have to wait to get coverage FOR THE CH, but won't stop the rest of the insurance.


Gundude wrote on Jan 1^st, 2009 at 5:18pm:

I thought I was fine after being ok for two days in a row. Last night/this morning was as bad as it has ever been. I've broken bones.... ...this is worse.

  yep it is.  Its best to find out WHAT it is first.

Excuse me?  You want an "easy way out"?!?  What, like everybody here is choosing to do this the hard way??!?

Boy, you have some balls coming on here and saying something like that.

UnderTheRadar wrote on Jan 1^st, 2009 at 6:21pm:

Excuse me?  You want an "easy way out"?!?  What, like everybody here is choosing to do this the hard way??!? Boy, you have some balls coming on here and saying something like that.

"Balls?" I don't get where I insulted you.

But if there is a relatively common way to get this to stop once it starts, and there is no real cure or prevention beyond the o2 or heavy drugs I can't afford anyway.  Yeah, I'm going to do it. And I'll call that "An easy way out" considering the options.

Yeah, it could be something else. I'm not a hypochondriac. I don't want drugs. But, I could go broke paying one weeks worth of blood tests and MRIs I'm certain they will want to run to be 100% certain what this is.

How much is a Neurologist and lab fees? $250? $500? $1000? Just an MRI costs $2500.

I might be out of a job soon enough. So yeah, as bad as this hurts, I don't have the luxury of doing this "The right way".

Frankly, I'm desperate for options. I'm trying to spend my dollar in the most effective way. If its something else... more information on CH will help me find that out. If o2 from the welding set works, I'll try it. I have found out for myself that drinking water and scalding hot shower massagers do a little, and trying to shove my eyeball into the back of my head with my fist doesn't change a damn thing. (I think it's just a hobby really.)

Any other fast acting vasal constrictors that work?

Shouldn't epinephrine or another synthetic adrenalin work as well?  Like an epi-pen for bee stings, for instance.

Gundude wrote on Jan 1^st, 2009 at 7:23pm:

UnderTheRadar wrote on Jan 1st, 2009 at 6:21pm: Excuse me?  You want an "easy way out"?!?  What, like everybody here is choosing to do this the hard way??!? Boy, you have some balls coming on here and saying something like that. "Balls?" I don't get where I insulted you. But if there is a relatively common way to get this to stop once it starts, and there is no real cure or prevention beyond the o2 or heavy drugs I can't afford anyway.  Yeah, I'm going to do it. And I'll call that "An easy way out" considering the options. Yeah, it could be something else. I'm not a hypochondriac. I don't want drugs. But, I could go broke paying one weeks worth of blood tests and MRIs I'm certain they will want to run to be 100% certain what this is. How much is a Neurologist and lab fees? $250? $500? $1000? Just an MRI costs $2500. I might be out of a job soon enough. So yeah, as bad as this hurts, I don't have the luxury of doing this "The right way". Frankly, I'm desperate for options. I'm trying to spend my dollar in the most effective way. If its something else... more information on CH will help me find that out. If o2 from the welding set works, I'll try it. I have found out for myself that drinking water and scalding hot shower massagers do a little, and trying to shove my eyeball into the back of my head with my fist doesn't change a damn thing. (I think it's just a hobby really.) Any other fast acting vasal constrictors that work? Shouldn't epinephrine or another synthetic adrenalin work as well?  Like an epi-pen for bee stings, for instance.

      Just give the oxygen a whack.  

       Kinder gentler Potter

"Any advice would be appreciated, but I'm really hoping someone can give me an easy "out". Not that you aren't great people, but I can't take this as a way of life."

The insult, my dear, comes from the insinuation that there IS an easy way out; if there was, do you think any of us would be here?

"But if there is a relatively common way to get this to stop once it starts, and there is no real cure or prevention beyond the o2 or heavy drugs I can't afford anyway.  Yeah, I'm going to do it."


Oxygen and drugs ARE the relatively common way.  Just what other option are you looking for?  

"I could go broke paying one weeks worth of blood tests and MRIs I'm certain they will want to run to be 100% certain what this is."

Yes, and there's a damn good reason they will want to run tests.  Cluster headaches won't kill you.  But there are many other things that mimic CH that CAN kill you.  Can you afford that?  


"Any other fast acting vasal constrictors that work?
Shouldn't epinephrine or another synthetic adrenalin work as well?  Like an epi-pen for bee stings, for instance."

It's not that simple, babe.  This is not just about blood vessel constriction. Feel free to read all of the posts and soak up the information on this board and learn as much as you can...

"as bad as this hurts, I don't have the luxury of doing this "The right way"."

No one here is going to diagnose you or give you permission to not see a doctor and just "treat yourself" to save money.  But it sounds like you have already made your mind up, so good luck to you. 

Hi Gundude & Welcome

 First, you ARE going to have to see a doc at some point.  Really serious conditions need to be ruled out.  

 Take the cluster quiz (link on left) and tell us how you do.

 Read the "cluster traits" and "the kip scale" (links also on left) and tell us if it sounds like you.

 STOP all alcohol . . . a major trigger for most Clusterheads in cycle.  I quit 2/02 . . . a real beer or shot of brandy will trigger an attack in minutes for me.  Also, for me, exhaust fumes, certain chemicals like carb cleaner will get me.

 The water is good.  I've used it as my preventative for four years now . . .NOT easy to do (see "water X 3" . .  link on left).

 I agree with Potter . . . if you've got 02 available . . . use it at the first sign of attack . . . if you have successful results, that will be something you can TELL YOUR DOCTOR about when you see him, armed with the 02 info off this board.

 You also need to read the many links available re CH symptoms/treatments and copy the ones you find pertinent to take to your doc.  I had been under a doctors care for 13 months with these damn things; scans, tests, non-working meds . . . they just got worse.  When I got here 2/02, was having 6-8 attacks daily and sometimes 3-5 at night . . . . was a basket-case.  This place gave me a name-for-the-pain and the (recognized) info to take to my doc and get a diagnosis.

 Start a headache journal today . . . it will help your doc help you.  Note the time, duration and intensity (use the Kip scale and take a copy of same to the doc) of each attack.

 Be Safe,   PFDANs

   Richard

No on all of 1-8 with some nausia (once)... but only if I had a really full stomach before it hit.

Yes on all the rest, except time of year. I've never been through this before... I don't know if the time of year.

With the exceptions of 10 & 16, I don't have to be asleep for it to hit, and they do vary in intensity. I don't always totally lose it.

Last night I was at a new friends house, and I was able to disconnect enough to keep responding to her when she wouldn't shut up and leave me alone. (I felt it start a bit about 3:45, hell from 4-4:40 and it fully subsided by 5am.) I was even able to get "frisky" before 5, but felt perfectly fine and looked at the clock at 5 exactly. I drank several cups of water, some Coke for caffine/sugar, and just walked and rocked it out. No drinks at all. No drinks since the new years adventure in hell, actually.

I am/was a regular social drinker, and I am an ASE parts tech and mechanic. Between cores, shops I walk into, and the occasional defective fuel pump... I work surrounded by fumes.

It doesn't matter. I've been such a wreck lately from the long nights, and going home early a couple times, I'm quite certain my job is soon to be a thing of the past. So I suppose I won't have to worry about that for long.

Oh yeah...the "kip scale" New years day one little one at the bar was a 6-7 I definately wouldn't have been able to sleep, but I could fake polite hellos. (I was drinking a lot of energy drinks at the time, I wonder if that had a moderating effect?) The one after I went to bed was a head banging love fest of me trying to shove my eye back into my skull and trying not to yell and wake people up. 8-9-10

But about 50% of my functional time, I may not be exactly in pain, but I can feel something... like a dull ache... like a weak hangover, still fully functional, but you know you drank... does that make sense? It changes before it gets bad.

Side question. Any of you guys know if this would prevent me from passing my FAA flight physical?

Gundude, there are lots of "doc-free" and "insurance -free" methods you can try. like Red-bull, Ice, and lots of it, oxygen, melatonin, exercise,,,, Folks here have posted lots of little tricks and weapons they keep in their arsenal to fight this shit that doesnt require a script from the doc. Try it. My advice,,,, read, read and read some more, AND,,,, save , save and save$$$$$$ and get your ass to a good doc.!!!!   Good luck dude, we all understand!!!        Tuck

There is no easy way with clusterheadaches. Best get a diagnosis so you know what your up against...then get 02.
the bb
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I hate it for you

GunDude,

I was off work under doctors orders and subsequently lost my job and unable to collect unemployment at the time I was Dx.  My employer also didn't offer insurance, so I had no coverage.  The man I was dating at the time insisted I see the doctor and I did.  Whole round of tests.  Yes I went into medical debt.  But at least I know what it was I was dealing with.  Was able to get medication assistance for most of my meds.  

I went through my tax refund on living expences in 3 months while I was out of work.  I was lucky, I was hired back once the doctor gave me the green light.

I still have outstanding medical from all that.  But I'm alive.  I didn't have a death sentance of a brain tumor or anything else sinister.  

Insurance will cover anything but a pre-existing condition, most of the time it will cover the pre-existing if you haven't been treated for it in a year's time.

Having medical debt isn't the worst thing in the world. And you NEED to know that this isn't something far more serious and possibly deadly.

Please take our advice and get in to see a neurologisy that specializes in headache conditions.  

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Although the *look back* period is bogus (they went back a year on my daughter).  They key is, if you are treated for the condition, they can only exclude the condition for up to a max of 12 months, many companies have a 6 month exclusion.

Lack of insurance?  Not the best bet, but if you have a university medical center near you, try that.

Last night was a mixed bag. My every-once-in-a-while 10:00pm was one of the worst yet... but nothing at 4am. I slept straight through.

I tried to set an appointment with a neuro... they won't even talk to me without a referral. I have a week and a half to wait to see a family physician. They could only tell me $58-$250...whatever the Dr felt like charging.

Gotta love it... >:(

Gundude wrote on Jan 6^th, 2009 at 1:53pm:

I tried to set an appointment with a neuro... they won't even talk to me without a referral. I have a week and a half to wait to see a family physician. They could only tell me $58-$250...whatever the Dr felt like charging. Gotta love it... >:(

For what its worth, I am DAMN PROUD OF YOU for making that call! When you get your referral, call the neuro's office BEFORE  you go, tell them you don't have insurance and that you're paying out of pocket. #1, they'll usually give a discount, and #2, you can make payment arrangements IF you discuss it in advance.

You should also call your GP's office and ask them to call you if there are any cancellations; that you are willing to reschedule to get in sooner. You'd be surprised how many earlier cancellations they have that they want to fill.

You keep strong, ok?

All the best,
Jen

listen to Jen
all the best
the bb

I'm also going to call the GP monday and have him bone up on CH. If he thinks he can do it himself, I might be able to get out without paying the neuro.

I can hope right?

Oh yeah, my 10pm came at 11:45, nothing overnight again, and I'm having my first afternoon round in a week right now. (about a 5, as you guys rate them)

Do you notice the weaker ones last a whole lot longer?

A lot of people refer to the "weaker" ones a shadows. And yeah, those can linger for hours, just feels like the beast is digging his claws in, but not quite attacking. Strong coffee with an excederin, or even an energy drink with caffeine and taurine, can sometimes knock those down for me.

Hoping you luck with the GP!

Joe

"Delayed by weather" Required supplies are being held up... it might be tonight, or maybe tomarrow. My friends are doing their best to help me, so I can't be angry. But it's all I can think about.

It doesn't matter, I guess. I'm on my way out of my "cycle" ... it's been over 4 weeks and the frequency and intensity of the attacks are starting to subside.

I'm actually afraid of that too. Not that I'll miss the pain... I'll never get nostalgic for that... but if the treatment I've worked out isn't administered during the cycle, I won't be certain that I've taken control of it. I need to know I can stop this when it happens again.

I'm actually calm. My car got stuck in my complex driveway when I came home this morning... but I didn't yell. I didn't freek out and fly into a rage, like I normally would. I just dug it out with silent efficiency and quipped about the mainenance service we get for our rental dollar.

I've been really quite pleasant lately. The background "Shadows" are still there... about half of the time... so I guess you could say I'm in pain right now. (kip 3) But the scale of what is painful and what isn't has been kinda revamped. It's like finding a zen spot to sit on the edge of  a knife. Don't wiggle, it won't help, and it doesn't change a damn thing anyway. I find it hard to even explain how it feels. Yeah, it hurts, but that's fine, it's not like I can't sit still, I can sleep, I can talk... That means things are pretty good. Good is relative, and bad isn't here... yet.

I understand why this place exists. Nobody else would understand what I'm saying.

Gundude wrote on Jan 10^th, 2009 at 6:56pm:

I understand why this place exists. Nobody else would understand what I'm saying.

It exists for people like you....and a thousand more after you.

Welcome HOME.   :)

A year and almost a half...

I had really hoped it was a one time thing.

Welcome back?  I know none of us wants to come back.

Are you back in your cycle?  Got a plan?

--Shaggy

I'm trying to collect everything I need to break my cycle... I'm pounding the energy drinks/water, and waiting.

I'm hoping what worked last time will work again. Right now I'm just in the early stage. 1 level 4 hit, and 1 7-8 hit with a few dozen good shadows.

I'm on day 5 of the new cycle.

Hi Gundude,

We were hoping it was a one-time thing. Sorry it wasn't.

So, what did you learn from your Dr.(s)? Has anything you've tried been exceptionally helpful? Not to pry, but were you given a definite diagnosis? Were you able to get any kind of health insurance?

Glad to hear from you again, but sorry at the same time.

Good luck,

Ron

Dude... I took the "Pizza Topping" and had 2 of the worst hits this morning.

Have any of you ever had the issue? Wait a few days and try again? Could the energy drinks have interfered?

I have more supplies... but it worked last time, the first time.

Has anyone ever had the issue?

I know I'm early in my cycle, but could that be a factor?

I'm just freeking out a bit here.

Hey Gundude.  I am guessing you dosed last night and got hit this morning??  Not uncommon, usually takes several days to sort itself out.  Some people get painfree days some people get a zinger the next day. 

Go to the cluster buster site for in depth discussions on the topic.  START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to or END PRINTPAGE

Some people there have many years experience.  During my cycle I ended up dosing 3 times (1 week apart) before I thought it was over.  Smaller and smaller Kip's.  If I dose during my shadow time I can end it in 1 smaller dose.  This is typical but no guarantees.

So, hang in there and use the techniques others have perfected.  Redbull should not have interfered, other prescription meds will.  Take doses 5-7 days apart.

Good luck daddy-o! 8-)(sunglass guy for extra luck)

--Shaggy

I too was recently diagnoised, without insurance, had all the labs done, CT's, 3 MRI's, Lumbar Puncture, blood work, a couple of visits to the ER AND I am unemployed and uninsured.  Look, you HAVE to see a doctor.  They have to rule out infections, blood problems, tumors, diabetes, the list goes on.  You go to the doctors, you do the tests, you get your diagnosis, get the meds you need, and when the bill comes deal with them later...pay as you can.  I have so far in the last 2 months racked up 7K in doctor bills, ER bills, lab bills, MRI's and CT scans, and Spinal Tap.  But, now I have a concrete reason as to was happening to me, why, and how to go about treating, preventing and aborting.  I in the little time that I came here have learned so much from the vets on this board.  The wealth they have given you and the advice is priceless.... I was scared too, I was tested for MS, Lupus, tumors, diabetes, I was prepared to get my affairs in order so to speak....but reading these boards from these wonderful people gave me the tools I need to ask the questions I need my doctors, where to go for outside information...don't fight them, don't discount what they tell you...I am not sure what state you are in but each state have programs from the uninsured, they can't deny you medical treatment, nor can they deny you the proper care for whatever condition that is given to you.  Believe me, we ALL have been where you are, how you take their advice is your deal, but if we, they, didn't give a rats ass, they wouldn't have replied, and if you want to be really honest, if you didn't want help you would have never posted..... Just my two cents!  :-X