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Colonel_Cluster
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I think I screwed up
« on: Sep 11th, 2004, 11:37pm » |
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1st time here..did alot of reading and empathizing. I was/am convinced I had chronic sinus problems until I came here. Every symptom, every story, every painful memory has happened to me over the last 5 years at one time or another. MY headaches are seasonal July-Aug and Feb-March like clock work. I only get them on my left side around my eye, temple and top of my cheek bone with fading pain in the bride of my nose and left part of my upper scull. I know it's about to end when a tiny discharge of "snot" drips down my left nostril. The pain is horrific, I to start to cry sometimes, and it turns me into a hermit for weeks on end. My wife is numb to it, seen it too many times I guess..I think it is wearing on her. I can't go for walks with her and the kids and if the temp if over 80 I won't even go outside (which is why the winter episodes puzzle me). I am schedule to have a very extensive nasal surgery next week. I had numerous CAT scans and MRI's over the years and one doctor pointed out I have a deviated septum that is impaling my sinus cavity along with a condition I can't recall the name of, but it is basically a hollow bone growth in my upper sinus area that expands and contracts with allergies or wheather pressure changes..which can cause severe sinus pain...sounds like the answer right? Well all that stuff is on the RIGHT side and I never ever have pain there..but I am desperate and scheduled the surgery anyway convinced it had to be the answer....now I am not so sure..my eye is starting to hurt..I will be back...anyone have any thoughts? Lonwinded post I know..but as you all know there is therapy in speaking to someone WHO UNDERSTANDS
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They say pain is all in your head...I agree...the left side of my head.
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IndianaJohn
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Re: I think I screwed up
« Reply #1 on: Sep 11th, 2004, 11:45pm » |
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Hi Colonel,
So sorry you have to be here, but glad you are. It sounds like you're in the right place though. I must admit the sinus surgery sounds quite drastic.
So sorry too that you're getting hit. The pain will pass.
Hang in there.
Read as much as you can. There are many great links to the left along with a cluster quiz. This may help you in confirming a diagnosis.
I get mine usually March/April and Sept/Oct. But I've had my cycle move around quite a bit too. I started my last one in May and it's just ending. I've had them right in the middle of winter too. The cold air kind of helps when I'm getting hit.
Again, hang in there. It will pass.
John
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Did my brains fall out or is this headache over?
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nani
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Re: I think I screwed up
« Reply #2 on: Sep 12th, 2004, 12:10am » |
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Colonel - is there any way to delay the surgery long enough to look into this? I would hate to see you have major invasive surgery and still be tortured by this beast. When I started getting these I was convinced I had a serious sinus infection. Read, learn and hang in there. 
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Colonel_Cluster
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Re: I think I screwed up
« Reply #3 on: Sep 12th, 2004, 12:51am » |
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I don't know....I have a box..not a small box but a box of discarded meds...allergy pills, nasal sprays, steroids, over the counter crap, etc...My life is slipping away..I now get the episodes at work..last week I had to lie inder my desk with the lights off and ice on my head..my coworkers still look at me funny..but what was I supposed to do? I work 40 miles from home and tried driving once..once..never again. I have taken thousands of miligrams of Ibuprofin in the last MONTH alone..I now have Fioricett (Tylenol, caffine, codeine and a small sedative all mixed together) along with a tray of ice cubes with cold water in a ice bag seem to take the edge off -if I have it available from the onset (I have a bag type cooler I take with me everywhere)but I have to keep the stuff in my system all day to be effective...which means thousands of milligrams of this crap in me which keeps me in a "mellow" mood all the time..I never want to do anything...the only good thing right now is I have not had a "10" in a few weeks..I think this stuff is dulling it but it is also dulling me...surgery seems...I don't know I have to digest all this..thanks for the help and concern...
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They say pain is all in your head...I agree...the left side of my head.
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synergy
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Re: I think I screwed up
« Reply #4 on: Sep 12th, 2004, 4:29am » |
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Sorry to hear you are having a rough time hun - hang in there and look into information about CH before you go and the surgery.
Keep us posted
luv sarah xx
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Giovanni
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Re: I think I screwed up
« Reply #5 on: Sep 12th, 2004, 5:15am » |
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You really do need a proper diagnosis from a neuroligist who specializes in "headaches" in order to receive the right meds. What you're taking now will not help and only cause rebounds. Once the diagnosis is given, you can get the right abortives that will terminate that headache like imitrex stat dose injection. In a work situation, it used to abort a single headache with me in less than 5 minutes. Verapamil will lessen the pain somewhat and perhaps make your cycle shorter. Other over-the-counter things like melatonin has worked on many of us.
Nani gave good advice for you to perhaps delay this surgery until you have a chance to check this thing out. Many people here have been down your path with wrong diagnosis, surgery for years.
Keep us advised on your progress.
Good luck,
John
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don
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Quote:| ..last week I had to lie inder my desk with the lights off and ice on my head. |
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Not a classic response to a cluster attack.
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karma
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Re: I think I screwed up
« Reply #7 on: Sep 12th, 2004, 9:19am » |
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First of all try and get your wife to cruise through this site. It may help her to understand what you are going through.
I think a majority of people here have at one time or another been told they have a sinus or other problem. I've been down that road and have had teeth pulled because of this thing.(at my request) The sinus surgery will not help alleviate a CH problem and from what I've read has minimul success in solving the sinus problem. At one point I had convinced myself I had sinusitus.
If you have CH the OTC meds. will make probably make it worse. At the very least it usually doesn't help with the CH pain. Been there done that!
Find a good Neuro, gather as much info as possible and then get a definate diagnosis. There is help and there are medicinal and nonmedicinal methods of dealing with the pain. Don't let the pain run your life.
Good Luck
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Colonel_Cluster
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Re: I think I screwed up
« Reply #8 on: Sep 12th, 2004, 10:27pm » |
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on Sep 12th, 2004, 9:12am, don wrote:
Not a classic response to a cluster attack. |
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It is a classic response for my attakcs..I find I need to calm my self ASAP and have tried dozens of methods and ice is the best so far. Try to imagine having one of these in the middle of a bank where you work...where would you go? The bathroom? and risk peoplr coming in and heraing you moan and whine? No..I have my own office and I lock the door and lay down...one for comfort and two to stay out of sight.
I have had a few trips to the ER and I found that the O2 calmed me quickly and in hand helped my attack...I asked my Doc and he literally laughed and said no way, you need to have blue lips, lung cancer or similar because it is too expensive and insurance will not cover it inless it is a feasible option-which it is not for this-yet-maybe someday. Everybody deals with this pain in their own way, mine may not be "classic" but it works for me.
[b][/b]
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They say pain is all in your head...I agree...the left side of my head.
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alleyoop
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Re: I think I screwed up
« Reply #9 on: Sep 13th, 2004, 12:56am » |
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Hey Colonel,
Everybody deals with these hits in their own way. Ice packs are used by many, including me. I think what Don was alluding to was you lying down in the middle of an attack. Although I've heard people here say that they do something similar (yoga, controlled breathing, etc.), for me and most others this is almost impossible, especially if it's a bad hit. Rocking back and forth is about as still as I can get. No way I could lie still. That's not to say that it's impossible with CH, especially if you've been practicing it for some time. The only way to be sure of what you've got is like someone else said, find a neuro who specializes in head pain and get a proper diagnosis.
That being said I'll briefly tell you what happened to me. Five years ago I started getting these excruciating HAs, always on the left side just behind my left eye. My nose would run and my eye would water. Even though I had two younger brothers who had been diagnosed years earlier with ECH(episodic cluster headaches), it did not even occur to me that I might have the same thing. When an ENT told me that they were sinus related and that he wanted to do sinus surgery, I concured wholeheartedly and agreed readily. Anyway, he did the surgery and it was no picnic. I had a lot of "unexpected bleeding." It would have been worth it if it had "cured" my headaches. It did not! As soon as I informed my ENT that I was still having them, he did more X-rays and said he wanted to go back in and "clean up a little I missed."
I told him no way and that I insisted on seeing someone else. He finally agreed to refer me to a neurologist, but said, "All he'll do is give you a bunch of drugs." I got lucky- he sent me to a good one. I also had a MRI done in the meantime to rule out anything "really bad." Thank God, that came up negative. When I told the neuro about the surgery and that the ENT wanted to do another one, he told me "You can have ten sinus surgeries and it won't help your headaches. You've got chronic cluster headaches!"
I finally understood. From that point on things started to get better for me. They really got better a year or so later when I found this site. I started educating myself and got pro-active in fighting this pain.
Colonel, take it from someone who's been down the road you're on. Put off the surgery and get in to see a neurologist as soon as possible. Like others have said, there are a lot of drugs and treatments out there that you need to try before you take the surgery route. I can't believe he would rather do surgery than give you oxygen. On second thought, sure I can- more money for him! O2 works for about 80% of CH sufferers and is a whole lot less invasive, not to mention expensive!
Even if you do have a legitimate reason for the surgery (deviated septum, etc.), You can always have that done down the road. In the meantime- research! Follow every link on this site. Google 'cluster headaches.' Every time you see something you want to show your doctor, print it out. The next time you go to a doctor-any doctor- go prepared. I will help you as will many others here. If you click on my name(Alleyoop), it will take you to my profile page. Scroll down to the bottom of the page and click on "Send this member a personal message." I'll be more than glad to help in any way I can.
Pain Free Nights And Days,
BobB
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thebbz
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Re: I think I screwed up
« Reply #10 on: Sep 13th, 2004, 10:58pm » |
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More than once I had to hit the fetal position and rock ,knock my head on the wall and moan. Keeps ya from fallin down. Sorry for your pain .... Don't forget to breathe. All the best, and when it gets really tough, always someone here to dump on.
BB
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TxBasslady
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Re: I think I screwed up
« Reply #11 on: Sep 14th, 2004, 2:58am » |
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Just a thought.....
Some of the things you take may cause rebound headaches. Be careful what you take.
I agree w/John (Giovanni), you really do need a correct diagnosis.
There are meds that will help with CH, and I would certainly try that before I had surgery. Melatonin works good for the nightime hits. Also, some take Magnesium in conjunction w/the melatonin.
Hope you can get a good diagnosis.....good luck to you, and keep us posted as to how you're doing.
PF vibes,
Jean
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Woobie
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Re: I think I screwed up
« Reply #12 on: Sep 15th, 2004, 3:21pm » |
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They were gonna do sinus surgery on Ramon too ---- and I'm glad we couldn't afford for him to be off work that long... it wasn't his sinuses.
dont do it until you know for sure.....
just my 2 cents........
tina
oh yeah - and welcome 
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Charlie
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Re: I think I screwed up
« Reply #13 on: Sep 16th, 2004, 5:42pm » |
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Welcome Colonel and sorry you have to deal with this horror.
Please do lots of thinking before this kind of surgery. I for one do not like the diagnosis as a cause. Doctors are frustrated by CH. Too many people go through unnecessary surgery that has no effect on CH. The best thing you can do is read everything here. You'll find a lot of good stuff and maybe you can make your doctors think twice. They need our info too. It's like epilepsy, surgery is the last option and not always effective.
Here is a techinque that worked well for me:
Dr. Wright’s Circulatory Technique
What follows is a technique learned from a neurologist:
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.
I hope this technique is helpful and I wish you the best of luck
Charlie
This link is to a letter from a friend that does the best job I know in describing for others just what CH is aboutl. It may help your family and friends understand.
http://www.clusterheadaches.org.uk/home/index.cfm?address=../clusters/no te_colleagues.cfm&added=04/01/04&code=CB
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lionsound
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Re: I think I screwed up
« Reply #14 on: Sep 16th, 2004, 5:43pm » |
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Welcome!
Have you been to see a neurologist yet?
IF the doc knows his stuff , an O2 script shouldn't be that hard to get . If not it might be worth your $$$ to get some yourself if you know it diminishes your pain. Read read read...lots of threads on here about that.
Ask ???? if you need to!
-Lionsound
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| « Last Edit: Sep 16th, 2004, 5:43pm by lionsound » |
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Superpain
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Re: I think I screwed up
« Reply #15 on: Sep 16th, 2004, 6:22pm » |
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 There is no classic response.
Don't have the surgery.
Get to a neuro!
O2!
Imitrex!
Prednisone!
Verapamil!
Not ibuprofen and hydrocodone!
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Chris
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Kris_in_SJ
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Re: I think I screwed up
« Reply #16 on: Sep 16th, 2004, 8:18pm » |
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Ditto to all the above, Colonel!
Chances are, almost all of us have been down the "sinus" road. Chris probably said it in fewer words, but the advice is the same.
Please .... get a proper diagnosis from a HA specialist. And please ... encourage your wife to come here and visit the supporter's board (or just read). This horrible syndrome is alot more bearable when our significant others stand by and support us.
BTW - I also prefer the dark and an icepack when the beast is upon me. Though I can't sit or lie still, I rock gently, do Lamaze breathing and pull my hair. Hey - whatever gets you through it is OK.
Many hugs and wishes for PFDAN!
Kris
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Kirk
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Re: I think I screwed up
« Reply #17 on: Sep 28th, 2004, 11:31am » |
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Howdy:
Been down your road. Get yourself to a decent neuro as soon as you can. Print out the O2 stuff from the site and show it to him. My cocktail is 480 mg. of Verapamil a day and Imitrex stat dose injections for when they get through. Your milage will probably differ. Everyone seems to respond to different regimes.
At any rate that neuro is really important.
TTFN
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