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Hal
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Misery Loves Company
« on: Mar 9th, 2008, 12:54pm » |
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I am episodic sufferer for maybe 12 years now. Misdiagnosed with sinus infections and deviated septum. I paid for the surgery even.
I've been in remission for years, and re-entered hell this week.
I had never heard of "cluster headaches" until yesterday researching pain treatments. I read the article on wikipedia, and said "I could have written the whole steenkin thing from personal experience". I literally cried when I found that I was not alone in my own personal hell. Grown men don't cry well, but I am working on it.
"And miles to go before I sleep ..."
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DennisM1045
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Re: Misery Loves Company
« Reply #1 on: Mar 9th, 2008, 1:18pm » |
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Hi Hal,
Welcome! I'm sorry you had to find this place but damn glad you did. You won't find another place on earth where there are more people know what you are going through and want to lend a hand getting you through it.
Have you taken the quiz on the left? It'll give you a pretty good idea if your symptoms are a match for CH.
Next thing is to find a Neurologist that knows something about headache. If he or she knows about CH that's a bonus but isn't required. It's more important that it be someone that you can work with.
Tell us something about what you are doing now to cope. We should be able to offer you some options to help improve things.
I came to these message boards last June after suffering alone for 12 years. Since then I've learned a lot from the knowledgeble folks around here. They've changed my life. Hopefully we can change yours for the better too.
-Dennis-
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Dancing the dance since 1995 ... Family member since 2007 ... No longer alone
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kevmd
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Re: Misery Loves Company
« Reply #2 on: Mar 9th, 2008, 2:10pm » |
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Hal
I too am 12 years episodic (still, I hope). I almost had the surgery years ago as well by some quack looking for my money. I may have needed surgery with a deviated deptum and chronic sinusitis. But I just knew this pain was something else. Also, coming off years of remission (4). Grown men do cry when it comes to CH. You'll find a ton of us here on the board. Let us know what meds your taking. I just started using Oxygen this cycle and it has been a life saver. Talk to your doctor about it right away. Welcome and I wish you good luck getting this shit under control
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Hal
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Re: Misery Loves Company
« Reply #3 on: Mar 9th, 2008, 2:56pm » |
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Hey guys, thanks for the response and encouragement! You probably know what a HUGE relief it is to find out that you are not alone in a private hell.
I will take the quiz, but haven't yet.
Now I've just been in this episode a few days. I have had two nights of hell. My last episode was two years ago and only lasted a few days. Then I was still attributing the pain to sinus conditions, and started an over the counter nasal spray. That episode lasted less than a week. Luck? Probably.
Something I noticed on my very first episode which lasted months, was that when I woke up in the middle of the night burning with pain, and I couldn't sit still, I'd take a small handful of aspirin and go on a bike ride. Yes, 2:00Am and riding the streets. This really seemed to help. Often I could go right back to sleep after a 10-15 minute ride.
Last night, after reading about oxygen, etc, and with 12+ inches of snow on the ground, I tried going up and down the stairs to elevate my respiration. Amazing, but the headache was 100% gone in maybe 5 minutes. Sadly, it returned after maybe 20 minutes, so I spent a good part of the night up and down the stairs. And today my knees are killing me ;-)
I am also starting the water therapy. And I am doing over the counter sinus stuff to minimize incidental swelling that might exacerbate things (I do have chronic sinus problems on the same side of my head as the headaches).
I am a little disillusioned with the medical community. I spent a ton of money and don't recall "Cluster headache" ever even being mentioned.
Thanks again.
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Hal
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Re: Misery Loves Company
« Reply #4 on: Mar 9th, 2008, 3:03pm » |
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I hit 14 out of 16 on the quiz. I answered no to droopy eyelid because I don't really know. I've never looked in the mirror. I am usually too busy rubbing my head, pacing, etc. I do prefer to be upright, away from bright lights and noises. But I probably tend to shy away from those even w/o headaches when I want to be comfortable.
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kevmd
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Re: Misery Loves Company
« Reply #5 on: Mar 9th, 2008, 3:17pm » |
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hal
you can't shy away from getting into see a good neurologist. You need to find one to diagnose you correctly. They may want you to get an MRI to rule anything else out. Then you can get started on some preventatives. Ask about prednisone, verapamil, and lithium. You'll need abortive meds like imitrex and oxygen. Imitrex if you are in good helth, outside of the knee problems.
Cluster headaches may not have been mentioned because it is rare and even alot of doctors have either never heard of them or do not know how to diagnose it. You are now your best doctor You need to educate yourself so you can educate a doctor if needed. Tomorrow is monday, most doctors are open. Not to sound like an a-hole, but if you don't start making phone calls tomorrow, then you are a gluton for punishment. How do I know that? My own procrastination has caused me to suffer more than I needed to. Good luck!
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Superdave
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Re: Misery Loves Company
« Reply #6 on: Mar 9th, 2008, 3:25pm » |
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Welcome Hal,
Your not alone any more, so glad you made it here.
Run out and get your self some red bull right now, it works great for so many of us. I keep them around the house, truck, pocket, every where I go. I prefer them room temputure that way I can down them faster. Actually any energy drinks containing Tauren and caffine, may really buy you some relief today.
Now that you've found us you'll be crying alot less 
A great place to be in a bad time 
Superdave
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Wow! you mean it's just in my head?
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Hal
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Re: Misery Loves Company
« Reply #7 on: Mar 9th, 2008, 6:50pm » |
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kevmd -
Here is where my head is at, at the moment. I'd love a knowledgeable professional opinion. Does health insurance typically cover whacko diseases like this?
But ... I have had long remissions, and my last couple of episodes were very short. Knock on wood. I am really hoping to find some kind of home relief. a) I feel like health care is morass to wade through for the wierd stuff like this and b) I have financial problems right now. Including a large IRS donation looming, $2000 worth of dental work very soon (give or take $1000), and I am in debt as a result of being out of work for a year.
That being said, my sanity does have a price and if there is more than a few days of this, I am going to get some kind of help.
I am glad to know the neurologist angle though. Before I was deciding whether to see a alergist or an ENT guy. I actually had an MRI with the ENT guy way back when. He was totally focused on sinus cavities and not nerves.
Superdave -
Right now my problems are occurring after I fall asleep at night. Is Red Bull going to make it harder to get back to sleep after an attack? Can you do that as a preventive, say ... before you go to bed? Any port in a storm, I know, but potential sleep deprevation is one of my big concerns right now. I need my brain functional at work 
Thanks guys.
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Annette
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Re: Misery Loves Company
« Reply #8 on: Mar 9th, 2008, 7:20pm » |
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Hello and welcome
Have a read of this and take it to your GP, it will help.
http://www.aafp.org/afp/20050215/717.html
Unfortunately CH is very rare and most doctors wont see even 1 patient with it in their whole working life.
Its our job to spread the words and to educate as much as possible.
Painfree wishes to you.
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Superdave
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Re: Misery Loves Company
« Reply #9 on: Mar 9th, 2008, 7:52pm » |
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Hey Hal,
Damn dood that's rough. My insurance company has chosen to omit any claims having anything to with headache. My neuro cut me a lot of slack on the bill when I became “a cash customer”. I went for three visits on just my co-pay. I think it was 2 or 3 months later until I got a bill from him.
I have had a great deal of luck taking melatonin. I’m using 9mg at night, It has really helped me sleep.
My condition is chronic and I get a lot of time for experimentation, I recently put together an o2 rig but haven’t had to use much. You can build an o2 rig for not much more than a couple imetrex nasal sprays if you have a script for medical oxygen. If not there are options. check the left side of the page for help with the o2. You can email some of the guys there for more details on this.
If you choose to buy some melatonin look for capsules your body will absorb them a lot more thourgholy than tablets. Now that I have become a Redbull junkie it doesn't really make me fly any more so you might give it a try, It will sure abort an attack for me. I’ve even started to drink coffee an hour or so before I go to bed.
These are the cheapest vasoconstrictors that I know to recomend.
Don't worry you'll be able to get this under control just read everthing you can on this website the answers are hear. PM me if you have more questions for me.
Superdave
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Wow! you mean it's just in my head?
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kevmd
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Re: Misery Loves Company
« Reply #10 on: Mar 9th, 2008, 8:08pm » |
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hal....ceratinly sympathize for your situation. Take a look at www.clusterbusters.com
Thats the route I am headed and certainly not very expensive. I am no expert by any stretch. PM if you would like to discuss further
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CostaRicaKris
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Re: Misery Loves Company
« Reply #11 on: Mar 16th, 2008, 11:04pm » |
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Hi Hal,
I've read all sorts of different stories on this board about insurance. I'm very fortunate mine covers everything I need, but I know that not everyone is so lucky. But, you'll never know till you go to the neurologist and find out. Wouldn't it be tragic to suffer all alone when there may be something within your reach that can help?
I prefer Rockstar to Redbull and it's funny, I never drank an energy drinks for anything but clusters. They don't keep me up at all, but they do ease the pain. I have no problem drinking them in the middle of the night and going back to sleep.
Kris
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Perediablo
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Re: Misery Loves Company
« Reply #12 on: Mar 17th, 2008, 3:15am » |
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Hello Hal,
Just found this the other day. Newbie here as well. There is a LOT of information here. I'm still reading it all. Everyone here is more helpful than I thought possible. They all have some really good info, listen to em.
Sorry you had to be here, but glad to meet ya!
Eric
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KaiB
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Re: Misery Loves Company
« Reply #13 on: Mar 17th, 2008, 10:00am » |
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Hi Hal, like you, I was alone till I found this site...its like coming home. Sorry for your pain.
Here's a bit of what I've learned this time through (with the help of the board)...your cycle will indeed end; look forward to that.
there is no underlying pathology-CH is unique. For me this means its not dental-as much as my jaw and teeth hurt during a hit. this is not easy to believe, as we all want to think that something is causing this B.S.
Stock up on toilet paper-I'm still amazed at the amount I go through as my noes runs out of control.
Going without sleep, in my mind, is worse that the actual hits after a week or so. Sounds like you are a night hitter...I finally got to the point where I took the hit in anticipation of the relief when it went away, and that beautiful pain free hour and a half of sleep.
Many on this board have mentioned "living for the PF periods"...this is a biggie. I deal with the pain knowing that it will go away...I deal with the cluster period knowing it will go away.
I also have never looked at my eye during a hit, don't want to; hard to peek in the mirror when you're doing your dance.
If you can, read every page in all three major sections of this forum...wealth of information, great people who understand and a source of comfort (knowledge is power).
This sumabiatch will not get you down!
p.s...This time through I went absolutely med free. I honestly believe this is the best approach for me. Next cycle I will Clusterbust and keep notes.
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Hal
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Re: Misery Loves Company
« Reply #14 on: Mar 17th, 2008, 1:10pm » |
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Well friends ... I have good news. I have been reading and absorbing and trying things out. I have done the water treatment for almost a week. And Melatonin. I also beleive that somewhere, at least for me, there is a connection between my lifelong chronic sinus problems and CH. My first encounter with the beast was in the midst of a sinus infection on the same side as my CH's (confirmed by xrays). So another part of my 'physician heal thyself' routine is to always make sure my sinuses are draining. For that I go to Claritin and plain saline solution inhaler stuff. I always go to this at the first shadow.
In any case, I have not had a HA in maybe 4 days, and probably not even a shadow for 2-3 days. As always I never know what to attribute this too. Luck? A combination of all the above voodoo? Or just a temporary respite. I am going to wait a few days and try one beer. That will give a clear cut answer. Anyway I don't go anywhere without a can of Red Bull, just in case.
I read everyday. A lot to absorb, but damn I wish I had known about this site way back when!!!
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CostaRicaKris
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Re: Misery Loves Company
« Reply #15 on: Mar 17th, 2008, 11:12pm » |
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You're not the first to suspect a link between sinus problems and CH. I began having sinus problems as an infant and I certainly would not be surprised if my Dr told me there was a link.
That made me smile when you said you never go anywhere without your can of RedBull. This morning I thought about how relieved I get at the sound of my can of Rockstar opening up
Hal, have you been diagnosed by a neurologist yet?
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Hal
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Re: Misery Loves Company
« Reply #16 on: Mar 18th, 2008, 6:38am » |
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CostaRicaKris, I have not done the neurologist yet. Partly because I just discovered what I had, and partly financial issues are rough right now. And I have had long periods of remissions, which I hope to get back into soon.
FWIW, my good streak ended last night when I awoke twice with headaches. Redbull and icepacks to the neck area really seemed to be quite helpful. And, I can't remember for sure if I took the steenkin Melatonin or not.
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CostaRicaKris
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Re: Misery Loves Company
« Reply #17 on: Mar 18th, 2008, 11:39pm » |
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From everything you've written here, it does sound like you're one of us (sorry about that) but nothing can replace the diagnoses of a doctor or the treatments they can provide. I hope that opportunity will present itself to you. For me, energy drinks easy the discomfort of shadows, but that's about it. I depend on Topomax to keep attacks at bay. If they do get through, I have O2 and Imitrex. I know what it's like to go through these attacks with no defense, I did it for years. So, I'm really hoping you are able to see a doctor.
Kris
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LivingBarometer
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Re: Misery Loves Company
« Reply #18 on: Mar 20th, 2008, 5:14pm » |
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I've red a topic before of someone running up and down the stairs for a couple of times and the CH dissapeared as well.
Maybe pressure changes help to abort the attack,we are all sensitive to pressuere changes related to weather so I thought this might be something...on Mar 9th, 2008, 2:56pm, Hal wrote:Hey guys, thanks for the response and encouragement! You probably know what a HUGE relief it is to find out that you are not alone in a private hell.
I will take the quiz, but haven't yet.
Now I've just been in this episode a few days. I have had two nights of hell. My last episode was two years ago and only lasted a few days. Then I was still attributing the pain to sinus conditions, and started an over the counter nasal spray. That episode lasted less than a week. Luck? Probably.
Something I noticed on my very first episode which lasted months, was that when I woke up in the middle of the night burning with pain, and I couldn't sit still, I'd take a small handful of aspirin and go on a bike ride. Yes, 2:00Am and riding the streets. This really seemed to help. Often I could go right back to sleep after a 10-15 minute ride.
Last night, after reading about oxygen, etc, and with 12+ inches of snow on the ground, I tried going up and down the stairs to elevate my respiration. Amazing, but the headache was 100% gone in maybe 5 minutes. Sadly, it returned after maybe 20 minutes, so I spent a good part of the night up and down the stairs. And today my knees are killing me ;-)
I am also starting the water therapy. And I am doing over the counter sinus stuff to minimize incidental swelling that might exacerbate things (I do have chronic sinus problems on the same side of my head as the headaches).
I am a little disillusioned with the medical community. I spent a ton of money and don't recall "Cluster headache" ever even being mentioned.
Thanks again. |
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Hal
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Re: Misery Loves Company
« Reply #19 on: Mar 20th, 2008, 9:26pm » |
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I ran across the same idea somewhere on OUCH. I think it has more to do with oxygenating the blood. So essentially the same thing as O2. At least that makes sense. I've some more oppurtunities to try it, and there is something to it (at least for me).
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