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nccluster
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Let Me Introduce Myself
« on: Apr 4th, 2008, 1:45pm » |
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Hi! I'm new to the site...I've been wanting to join an online support group for a while, but my head usually hurts too badly to sit here and read the computer. But I'm a lot better now! Here's my story (extra short version):
I'm a 33 yr. old female in NC (looking at the members in NC, I was actually very surprised at the number of members in my town). I quit my job as a teacher at the end of the 2007 school year partly due to my cluster headaches. I couldn't work, take care of my children/family, and deal with the pain. I don't have to go into detail there...you all know how that is.
About 7 or 8 years ago, I was diagnosed with migraines. I've been taking Imitrex since then. At that time I was also diagnosed with TMJ and took Vioxx. About 2 years ago, I noticed a change in my headaches. And they got progressively worse. I started taking Topamax around March 2007, but I was allergic to it. I really thought that it was constant sinus infections....then in the late summer/early fall of 2007 it got to the point where my headaches were every day for what seemed like all day. My headaches are on the left side of my face, around my eye; my left eye waters; my left nostril runs; they keep me up at night when they occur; Usually they are worse from about 10 am until 1 pm. The pain is excruciating, but I don't need to tell you guys that. It hurts to put on makeup, so I don't wear it unless I have to.
In Jan. 2008, I went to an ENT, who referred me to another ENT at UNC-Chapel Hill. According to a Sinus CT, I have a collapsed nasal valve and a deviated septum on the same side that I experience the pain. I've already had nasal surgery in 1992, and I don't want to go through with it again, but the ENT at UNC wanted to do surgery. He said the pain could be coming from that problem (pressure). No guarantees though. Curious to know if anyone else has had nasal issues too.
I did some research online and came across info. on Cluster Headaches....the description was exactly what I had been telling doctors. I saw a neurologist in Feb. 2008, and he diagnosed me with CH. After 2 rounds of Prednisone (which always helped when I was being treated for what we thought were allergies/sinus), Lidocaine drops in the left nostril, and working my way up to 1000 mg of Depakote ER, I have been Cluster Free. The doctor also prescribed Oxygen, but I was honestly scared to try it....now I see it probably would have helped.
The last 2 days though, I have had a relapse and the CH have come back. I've tried Maxalt, because I don't like the side effects of Imitrex; but Maxalt doesn't really help. I'm wondering if the weather has an affect on them....it's crazy here...cold one day, hot the next, a lot of rain.
I've gained weight with the Depakote ER, but it has given me back my life.
So much for keeping it short! 
Looking forward to meeting you all!
Heather
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| « Last Edit: Apr 4th, 2008, 1:47pm by nccluster » |
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seasonalboomer
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If I think hard enough maybe it'll go away.....
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Re: Let Me Introduce Myself
« Reply #1 on: Apr 4th, 2008, 1:58pm » |
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Heather,
I'm sorry you are having to look for answers to the pain caused by your headaches.
Some of what you describe doesn't fit the classic description of cluster headaches, particularly with regard to the length of experienced pain. You describe feeling pain "all day". And I'm not saying you don't have CH, I'm just saying that some of what you describe might point toward other answers.
Have you taken the cluster quiz here on the site?
This is not a "club" that any of us want to members of, and also not one we try to exclude others from but we hate to see someone trying to solve the wrong problem.
What is the length of an actual Cluster headache for you? When you say you've been taking imitrex "since then" -- have you been taking imitrex just when you get a headache? Pills? Injections?
There's a lot of info here. I hope that you can continue to find some answers that may help you. There's nothing worse than when the treatment ends up being worse than the condition it is treating.
Scott
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seasonal boomer
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Guiseppi
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Re: Let Me Introduce Myself
« Reply #2 on: Apr 4th, 2008, 3:16pm » |
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Welcome to the asylum! You should definitely give the oxygen a try. Cheap, no side effects, and an incredibly effective abortive medication for many of us. I can stop the beast in his tracks in as little as 6 minutes using only oxygen. 30 years of doing the dance and it' still my first line of defense. Be sure and read the oxygen link on the left as used incorrectly it's worthless. The key points:
1: Pure oxygen at a high flow rate, at least 15 LPM
2:A NON RE BREAHER MASK very important, re breathers and nasal canulas do not work.
3: Started at the first sign of an attack. Waiting 2-3 minutes too long will substantially extend the amount of time it takes me to kill the headache.
There are many other preventative and abortive medications for you to read up on here and discuss with your doctor. We'll start to sound like a broken record but please do try the oxygen, it's an amazing tool for many.
Guiseppi
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nccluster
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Re: Let Me Introduce Myself
« Reply #3 on: Apr 4th, 2008, 3:50pm » |
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Hi Scott,
It's funny that you ask about the "all day" thing. I say "all day," but the headache probably lasts 2-4 hours, then my eye and cheek area is sore for most of the day afterwards. The Imitrex also makes my muscles weak feeling and burn a little. Thus I use the word "all day," but I guess that's kind of using it loosely.
Up until the Depakote started working, I was taking Imitrex every day, up to 6 Excedrin, and around 4 Ibuprofen. Still not getting any relief.
I did take the quiz, as a matter of fact my neurologist asked me pretty much the same questions at the first visit. My answers pointed right to CH. The pinpointing factor at my visit w/ the neurologist was the restlessness associated with my headache.
And Guiseppe....thank you so much for the info. on the Oxygen.
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Superdave
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Re: Let Me Introduce Myself
« Reply #4 on: Apr 4th, 2008, 3:56pm » |
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HI Heather, Welcome to the cluster club.
I’m sure by now you have found there is a lot of information here that may be able to help you .
Read ...read...read... read and ask as many question you can think of
o2 is the greatest thing since sliced bread and red bull or any energy drinks containing taurine works wonders for me to abort an attack
I had a bad case of TMJ from sleeping on my non ch side for several years. Then not long ago I had a wisdom tooth pulled, well really more like chiseled out of my jaw. It was a stubborn little sucker, he yanked and pulled on that thing for close to an hour. Finally he got it out, all of the stress that was put on my jaw during the extraction cleared up the TMJ immediately and I haven’t had that issue since.
Superdave
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Wow! you mean it's just in my head?
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seasonalboomer
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Re: Let Me Introduce Myself
« Reply #5 on: Apr 4th, 2008, 4:06pm » |
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It sounds as though you possibly had enough meds and otc's going in that you were getting rebound headaches to complement your CH attacks. Just a theory of course.
As you see many others, like myself, choose to ride with the Cluster Headaches cycle and only treat a CH "hit" when it occurs, relying only on abortive strategies - avoiding the meds that come with preventative efforts.
- Oxygen is my #1
- Red Bull
- Imitrex injections if the first two don't work (these work within 5 minutes or less)
For those with really frequent hits, and daytime hits with jobs that don't allow this is not as viable a strategy. But it works for many.
Scott
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coach_bill
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gimmie my imitrex!!
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Re: Let Me Introduce Myself
« Reply #6 on: Apr 4th, 2008, 4:31pm » |
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Welcome Heather, your part of the team now, your on the cluster headaches roster. If you see something that you can do to help a teammate do it, share your info,or your experince because thats what your new teammates will do for you now. Feel better.. Coach Bill
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boy i cant wait till it's my turn to give him a headache. paybacks a bitch
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mezza
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Re: Let Me Introduce Myself
« Reply #7 on: Apr 4th, 2008, 7:40pm » |
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welcome heather- I am a female and live in NC too. I have finally found a great neurologist who knows what they are doing and would be glad to share that information with you if you need a doctor.
feel free to email me 
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CostaRicaKris
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Re: Let Me Introduce Myself
« Reply #8 on: Apr 4th, 2008, 9:30pm » |
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Hi Heather,
Sorry you need to be here, but welcome.
1. Regarding the "all day pain" Between, shadows, attacks and the after-attack soreness, I feel all-day pain sometimes as well (but I know what you meant Scott  )
2. Heather, there have been several threads on this board about people who have sinus issues before developing CH. Nothing scientific that I'm aware of but several discussions about it. I had sinus infections between the ages of 3 - 14. When I was 13, I had my left sinus flushed out. They went into the cavity through my mouth to do it. BTW, my CH is on the left side (50/50 chance) I later developed CH when I was 29. Is there a conection... who knows.
~Kris
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Visit my website: http://www.active.com/donate/amnhealthcare/KristinaMorris to learn more about Girls on the Run, a non-profit prevention program that encourages preteen girls to develop self-respect and healthy lifestyles through running
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Hal
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Re: Let Me Introduce Myself
« Reply #9 on: Apr 5th, 2008, 7:13am » |
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Re: "nasal issues" ... this all sounds familiar. My initial encounter with the beast was 10 or 12 years ago. I eventually wound up with an ENT who wanted to do surgery for a deviated septum. Which was done. The problem was despite several months of sheer hell, the CH cycle had ended by the time surgery was done. And then I didn't have a CH for several years, but they did come back. But I have not had a cycle nearly as bad as the first one. At least they don't last nearly as long. So was all this co-incidence? Bad luck/Good luck? I don't honestly know.
I do have chronic sinus problems on the same side that I have CH (the left) still. It is congested, stuffy, runny, whatever 365 days a year. Often while the right side is clear as a bell. Its been that way as long as I can remember (I'm 57 M). I have a history of sinus infections on that side as well. So is there a connection to CH? I think so, but I have no idea just what/how.
One thing I try to do, and it might help explain long remissions and short cycles for me, is I pay close attention to that bad sinus. I take generic Claritin at any sign of stuffiness, and use saline solution mister thingie to keep it clear and draining. The lack of drainage I think is definitely a cause of problems for me (not sure how this correlates with CH though).
In any case, I'm new here and have found scads of good advice and help. I just ended a cycle but still on Melatonin (when in cycle I get killler headaches every night after falling asleep), and still have plenty of Red Bull on hand in case of relapse.
Best of luck.
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RichardN
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Re: Let Me Introduce Myself
« Reply #10 on: Apr 6th, 2008, 1:03am » |
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Hi Heather & Welcome
First thing tomorrow morning, call up your doc and tell him you've been in contact with other CH sufferers and you want to take him up on his 02 script offer. He needs to specify 12-15 lpm with a non-rebreather mask (the one with the bag).
I can't take Imitrex (some artery blockage and high cholesterol) . . . so 02 is my only abortive. I too can kill the beast in minutes if used early-on in the attack . . . works for 70% of us and should be your first-line abortive.
Don't discount water therapy (see "water X 3" . . . link on left). I'm convinced this has helped me reduce the frequency/intensity of hits. You need to take a multivitamin and start using sea salt to replenish essential minerals if you try this . . . . it's not easy drinking that much water . . . but the price is right. . . and the results may be pleasantly surprising.
Read, read, read . . . and ask any questions you might have. I was a basket-case when I got here six years ago . . . this place gave me my life back. One of my favorite motto's on this board is, "nothing works for everyone, but SOMETHING works for everyone" . . . and here you have a very good chance of finding the "something" that works for you.
Be Safe, PFDANs
Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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