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   Author  Topic: Do you think its CH??  (Read 1123 times)
violingirl
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Do you think its CH??
« on: Dec 6th, 2007, 4:41pm »
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Shocked  Hi there.  So I'm a migraine sufferer who had a very different headache starting a few days ago.  I've never had this happen before.  
 
I'm out with my 4 kids about to get pictures taken, when I look in a mirror, and my left eye is all blood-shot and tearing and my head feels like one of my worst migraines, all in an instant.  It left  within 15 min.
 
4 hrs later, at 8pm, same thing.
 
11:30 pm, same thing, only twice as painful.  I try to lay down (like I do for my migraines) but end up sitting on my bed rocking back and forth.  My left eye is crying, my left nose is dripping.  It totally disappears within 45 min.
 
2 minor episodes next day in morning and afternoon, then 8pm and 11pm minor.  
 
Wake up at 4am with killer episode.  Sit up and rock back and forth, holding my palm to my left eye.  When its mild enough to lay back down, I fall asleep until 8am when it happens again, just the same as at 4am.  
 
I looked up cluster headaches as I had heard of them but never knew much about them.  I thought, 'If ever there was a cluster of headaches, this must be it!'  Sure enough, I was amazed to see all the EXACT symptoms felt by thousands of people.  If I hadn't found this website, I would have gone to the ER.  This is so weird.  I can hardly believe its real.  
 
For those of you who have had this for a while, what was your first episode like?  How long did it last? Days?  Weeks?   I know I probably won't get answers for everything, but I'd like to know a general idea of how long to expect this to last.  
 
Thanks,
Karmyn
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Re: Do you think its CH??
« Reply #1 on: Dec 6th, 2007, 5:06pm »
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Karmyn, sorry to hear you are in pain. Nobody here will diagnose you, even if what you have sure sounds like it..... Did you take the cluster quiz on the left? THat's a good indication of whether you have CH or not, but a proper diagnosis should come from a Neuro.
 
Some of us get hit at night exclusively, and only get hit during the day if we eat/drink something that will trigger it, or take a nap.
 
Write down what you eat all day long, and be specific. For instance, aspartame (equal) is a trigger for me, so don't just write down Coffee or Soda (diet soda for me is a no-no while in cycle, but regular is OK). Also citric acid for me is a trigger, so some soda's trigger while others don't. If it is CH that you have, at least you'll start to learn what triggers your headaches and learn to avoid those things. Alcohol is a sure trigger for many of us.
 
Good luck and PF wishes.
Jose
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Re: Do you think its CH??
« Reply #2 on: Dec 6th, 2007, 5:21pm »
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Hi Karmyn
 
I agree with Marlin, you should go see a doctor who has experience in headaches, preferably a neurologist, to get a proper diagnosis.
 
Since this is new and seemed to have developed suddenly you should have a few tests like blood tests and MRI to rule out other nasties. Some other conditions can mimic CH.  
 
If you do indeed have CH, you will soon learn that there isnt any hard and fast rule that this condition plays by. Each person is different and each cycle is different again. So many factors seem to play a role in CH that although there are similarities, no one has yet found a common trait or characteristic that can be applied to all CHers.  
 
I really hope that you dont really have CH. I have migraines and my husband has CH and I have to say, its much much harder to deal with CH.
 
Painfree wishes to you.
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Re: Do you think its CH??
« Reply #3 on: Dec 6th, 2007, 8:05pm »
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Hi Karmyn & Welcome
 
  First off, . . . very glad you found us so quickly . . . many go (and have gone) years without correct diagnosis/treatment.
 
  I am a "head-trauma" CHer.  My attacks started after I nailed my noggin 1/01.  Of course I saw my doctor (CH pain is so intense you know it has to be life-threatening . . . tumor, blood clot, aneurism, something not to be ignored), who ordered CTs, MRI, blood work, etc., which of course all showed "normal" . . .  which IS normal for CHers.  I wasn't able to get a correct diagnosis til my wife found this site (2/02), and I finally had a "name-for-the-pain" and a course of action to battle the beast.
 
  Tomorrow, call for a neuro appt. . . . and make sure you tell them your symtoms and research lead you to believe you may have CH (and if they tell you only men get CH, hang up and call someone else).   Neuros who are CH savvy know how painful these bastards are . . . and they might put you first in line if there's a cancellation.  If you can't get a quick neuro appt.,  call your GP and he can order the CT & MRI  NOW, so you can eliminate the obvious ,potentially dangerous scenarios, and have those reports ready for the neuro.
 
  Read, read, read.  There's loads of info on this site and folks with multiple headache types, plus CH . . . which does sound like you . . . but you really need to get that confirmed.
 
  ANYBODY OUT THERE KNOW A GOOD NEURO in Karmyn's area of the country?
 
  Keep reading, keep asking!
 
     Be Safe,   PFDANs
 
   Richard
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Re: Do you think its CH??
« Reply #4 on: Dec 6th, 2007, 10:04pm »
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Is Salem in OR??  If so, there is one doc listed on OUCH that is sufferer recommended.  He is John Watkins in Newport.
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Re: Do you think its CH??
« Reply #5 on: Dec 6th, 2007, 10:51pm »
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Get your hands on some O2 if you can and try it per the O2 info on the left menu bar. I think the results of that test kind of speak for themselves.  
 
Try to get a appointment with a Nero at a headache clinic.
 
Read, Read, and Read because the guys and gals on this site have been through the mill so to say.
 
BW on PF time!
 
Rolo.
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Re: Do you think its CH??
« Reply #6 on: Dec 6th, 2007, 11:59pm »
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Roll Eyes ****SIGH***** This is sounding complicated.  I don't do doctors!  We don't have insurance.  Hubby is self-employed.  We currently have over 50k in bills from my emergency C-section in June.  Do you think I want to pay thru the nose for a Neuro?  Eek! NO!  
 
I haven' had any headaches since 8am.  I'm getting my hopes up that it was just a freak occurance.  We'll see what tonight brings.  Thank you all for your concern and ideas.  You're making me think I should be more concerned.  I've suffered from migraines for so long that I just figured its something I've got to live with.  
 
Thank you all--It is very reassuring to know that there are tons of people out there who know exactly what I'm talking about.  God bless you all.
 
Karmyn
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Re: Do you think its CH??
« Reply #7 on: Dec 7th, 2007, 1:04am »
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Quote:
I've suffered from migraines for so long that I just figured its something I've got to live with.

 
   hmm. and I have sufferered cluster headaches for 21 yrs. that it is something that I have learned to deal with.
 
    I also play the violin Karmyn.   Wink  We'll try to help you hon.  Get thee to a good Dr. and get diagnosed properly, ask for 02.
 
Linda
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Re: Do you think its CH??
« Reply #8 on: Dec 7th, 2007, 2:50pm »
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Karmyn,
 
CH is complicated.  There are not two clusterheads who experience the exact same symptoms.  There are not two who respond successfully to the same treatments.
 
So, you don't "do" doctors.  Your husband is self employed.
 
So is my husband.  We pay through the nose for extremely limited health coverage, none of which covers my CH.  When my CH began, I did not initially go to a doc, because, just like you, I felt we couldn't afford the bills.  But I researched online, and found this site, also, just like you.  
 
The next cycle, I knew I needed help, and did go and get a proper diagnosis.  We bit the financial bullet and paid out of pocket to do this, and it was not cheap. But, at least I now know what it is that I have, and we're combating it, under doctor's care, with some success.
 
 You cannot diagnose this yourself, because there are other major problems that can mimic CH, and could be life threatening.  
 
I don't want to scare you.  CH will not kill you.  But, not knowing whether it IS CH or if it's something else, might.
 
It's your choice.  
 
Sandy
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Re: Do you think its CH??
« Reply #9 on: Dec 9th, 2007, 9:12pm »
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Hi Karmyn:
 
It sounds like CH to me but you do need to be sure.  
 
You asked what our first hits were like: I was sitting in front of Johnny Carson and got hit with the worse pain ever. I paced and it repeated off and on for days and weeks. I was lucky to know a neurologist well and I was quickly diagnosed.  
 
Specialists are expensive but maybe you can get some help somewhere. Meanwhile, here is something that worked for me, costs nothing and you can't hurt yourself in any event. Give it a shot:
 
    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. Think of feeling your pulse in your hand. Increased circulation will result in a reddening and warming of the hands. 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. Try experimenting between attacks. You will find that it gets easier with practice. Every now and then it will work almost immediately. I lived for those moments.  
 
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.
 
I used to try to imagine I was pushing blood away from my neck 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  
 
 
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Re: Do you think its CH??
« Reply #10 on: Dec 12th, 2007, 2:34pm »
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on Dec 6th, 2007, 4:41pm, violingirl wrote:
 
If I hadn't found this website, I would have gone to the ER.  This is so weird.  I can hardly believe its real.
 
Karmyn,  
I hope that you have gone with your first instinct and seen a doctor by now. the internet is no place to get a diagnosis. If you have any kind of head pain that is NEW FOR YOU then you really need to get yourself checked out by someone right away.
 
Keep a diary of what  is going on and get yourself to a doctor.....please.
 
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Re: Do you think its CH??
« Reply #11 on: Dec 15th, 2007, 2:47pm »
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Since you don't have insurance, are you near any medical schools?  If you are, almost all medical schools have clinics for each specialty.  If you are in Oregon, there is OREGON HEALTH & SCIENCE UNIVERSITY in Portland.
 
If you're in Salem MA, there are four universities with MD programs, BOSTON UNIVERSITY, Tufts University, Harvard University and UNIVERSITY OF MASSACHUSETTS MEDICAL SCH WORCESTER.
 
'darlin
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