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luvin2pac
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Do I have clusters?
« on: Dec 27th, 2004, 12:03am »
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My name is Maggie. I am 22 years old and have had these headaches since I was 11 years old. Since then, my headaches have increased in intensity and frequency. At least every two weeks lasting a maximum of 5 days, headache  off and on. The pain is similar to a "brain freeze", an intense burining on one side of my face. Primarily beginning up my nostril, behind my eye, down to my temple and sometimes to the bottom of my skull where my neck meets my head. The pain is constant not pulsating. The side of the headache nostril and eye are sensitive to both cold air and too much sunlight. Warm water (hot shower) is the closest thing to relief. It often makes my teeth on the headache side sensitive. I usually cover them with my tongue, because I have to breathe through my mouth, because the one  Embarassednostril is sensitive to the air and often runny. A warning sign of the headache often consists of a red and hot ear. I've tried drugs such as: Maxalt, Imitrex, Relpax, Elavil, and now I'm on a new one called propanol. I have been using Vicodin and Ibprofin together to better help me "tolerate" the pain. It can NEVER stop the pain. I am a full time college student and a mother of a 5 year old. My attendance and grades suffering. They are a complete interference in my life.  I feel guilty having to waste time with my family because i feel so awful. I often argue with my husband because I turn into an awfully mean person when in pain. I always have to end up apologizing afterwards and just hope he understands. I couldn't ask for a better support system, but sometimes I feel he just doesn't understand enough for me. You have to experiece one to fully understand. They are NOT just headaches. I would'nt wish one on my worst enemy! I'd rather go through labor again! I experience no vomiting, sensitivity to light or sound. For now I just try to be the best wife, mother, and student, all while dealing with these annoyances. Please let me know if you think I may be a cluster headache suffer. I have done research and Cluster headaches are the closests symptoms I could find. So far my doctor agrees. I just got an MRI last month and it showed nothing. I have also been going to a Chiropractor and have seen no improvement. I'm usually told it is almost impossible  for a female my age to get cluster headaches. However, when I'm crying or tugging on my hair, pushing around my eye until I'm sore and my hand hurts, I seem to think not.
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Re: Do I have clusters?
« Reply #1 on: Dec 27th, 2004, 12:18am »
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Hi Maggie,
 
Sorry you have a need to be here.
 
Quote:
I'm usually told it is almost impossible  for a female my age to get cluster headaches.

 
Females at your age do get cluster headaches.  
 
It's gonna be hard for everyone to give you an opinion about whether you have cluster headaches based on your description.
 
Check out the following article, it is my favorite description of cluster headaches:
 
http://www.hospital-doctor.co.uk/hd_news/hd_news_article.asp?ID=2498& ;Section=Feature
 
It is kinda important to confirm whether you have cluster headaches or not.  You don't want to be taking cluster headache meds if you don't have to... some of them are rough.
 
Best wishes to you,
 
--- Steve
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Re: Do I have clusters?
« Reply #2 on: Dec 27th, 2004, 12:48am »
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Welcome Maggie, and I'm sorry you're here. Women do get CH. Have you seen a neurologist? I see that you have tried some of the typical CH meds, have they helped? Vicodin and Ibuprofen will not abort a CH. Did the Imitrex stop working? None of us can say you have CH or not, we're not drs. Some of what you describe sounds consistent with it. Give us more info and maybe we can help you sort this out. Pain free wishes to you.
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luvin2pac
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Re: Do I have clusters?
« Reply #3 on: Dec 27th, 2004, 2:42am »
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Hey, it's Maggie again. Thanks for your thoughts. I did see a nueroligist, however, it was when I was 13 years old and I was told it was just childhood mirgrains and that I would grow out of it. Well here I am. I do have an appointment next month. All of the meds I've tried so far have had no effect. The best one however that worked okay was  Maxalt. I don't know what other details to give about the headaches. Maybe I could answer some questions.  I do find myself restless, tossing and turning trying to find a position that could relieve some of the pain. I always lay on the side that hurts to try to put some pressure on it. Other times I just don't know what to do. What I wanted to know is, is every single part of the headache excurciateing for you all? I can still function with the headache most the time but other times it tears me down. I can't even think. My mom asked me one time "how do you function on vicodin?" and I said, "I can function better on vicodin than I can with an excruciating headache."  But, please ask any question that come to mind just to give me an idea of what I'm dealing with.  
Thank You
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135447360 135447360   mondocharlie   mondocharlie
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Re: Do I have clusters?
« Reply #4 on: Dec 27th, 2004, 3:13am »
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Welcome to the madhouse.  
 
Much of what you say sounds like clusters. One of the better tests I like is that do your headaches wake you out of a sound sleep? If they do, it's a very strong sign. Also, no one can sit still or lie down while having a cluster. When your headaches end, do they seem to "drain" away quickly? This too would be strong evidence of cluster attacks.  
 
Here's hoping you don't have this horror but let us know in any case.
 
Charlie
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luvin2pac
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Re: Do I have clusters?
« Reply #5 on: Dec 27th, 2004, 5:24am »
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To Charlie, thanks for the response. The answer to the first question. Yes. Without a doubt, they wake me up right out of deep sleep. In fact in the first couple of years with the headaches, they would come at about 3 to 4 in the morning like clockwork. I even had a routine. Get hurry up and eat some cereal or drink milk the fastest way to get something in my stomach, take someting, like up to 5 tylenol at a time, before I began taking vicodin, then sit in the shower and rub my head until I could go to bed. It's funny because even when barely manage to get away by falling asleep after it has calmed down, I even dream about the headache. I have a headache in my dream! Theres no escaping. The buring sensation is so intense. When they first started I really was convinced I was going to die of a brain tumor. I was scared to death something was really wrong. I had never experienced pain like that in my life. About them draining, it's hard to tell because the vicodin does alter them either in a good way or bad. Actually, one time while sitting in the emergency room in agony, all of the sudden it was gone. Like it had never been there in the first place. A trip. But I was to scared to leave in fear it would come back. And it did. And when it hits, I can feel it coming on, but it goes from a 1 to 10 in like less than 10 min. I'm rambling on because I have never talked to anyone who might understand what I'm going through. Even to explain it to anyone is not the same. You know?
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Re: Do I have clusters?
« Reply #6 on: Dec 27th, 2004, 9:08am »
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Hello Maggie,
     Sounds very similiar to what I often experience.  You should get to a neurologist as soon as you can.   In the meantime, you may wish to try using oxygen if you can get to it.  There is no way I could tell if you have CH or something else, but oxygen will not hurt you to try.  My first experiments with oxygen came by reading about it, then using the oxygen from a cutting toarch.  I was pleased that it aborted an attack.  Since then, I have not been without oxygen.  Your Dr. may perscribe O2 for you, or perhaps your Neruo can do that.  Untill then, you may wish to contact your local EMT or firestation and explain your desire to try O2.  If all else fails, you may be able to find someone with some welding tanks you could borrow.  If oxygen helps relieve the pain behind your eye, it may be another indication of CH.
    Good luck.    I hope you dont have to be here long.
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Re: Do I have clusters?
« Reply #7 on: Dec 27th, 2004, 9:59am »
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Maggie, welcome to the board... Imitrex injections work for me, don't know if you have tried them yet. If your going to a neuro... I would at least try it.  
 
Do you love tu-pac or do you love to pack?  Grin
 
 
wishing you pain free days--
Beth
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Re: Do I have clusters?
« Reply #8 on: Dec 27th, 2004, 2:10pm »
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The best thing that you can do for yourself is read as much as you can before your appointment and even copy some of the info and show it to your doc.
 
What you describe really does sound like cluster headaches.  Have your tried oxygen?  That's one of the most often used and successful abortives, along with Imitex, but the O2 must be used with a non-rebreather mask which you will read about, as well as the correct amount such as, I believe,  9 plus liters per minute.  
 
We have a support corner which would do your husband well to read.  He will learn fro other supporters that while you are suffering, it is best to just let you alone until the intense pain is over.  There are many tips for both you and hubby here.
 
It has taken years to do the surveys and research that you will find in the left margins, but remember, it was all done by US, the sufferers who know what it is really all about.
 
Glad you crossed our path.....welcome to Clusterville and good luck with your new doc.  Go prepared and you'll get more cooperation from the doc.......you might even know more about clusters than he does.
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Re: Do I have clusters?
« Reply #9 on: Dec 27th, 2004, 3:12pm »
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I can't eat during a cluster  Roll Eyes
 
Unsolved
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Re: Do I have clusters?
« Reply #10 on: Dec 27th, 2004, 4:53pm »
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Do you still take the Vicodin?
 
Narcotic meds may cause rebound headaches.   These drugs do not help CH.
 
I cannot lie down at all with a CH, and like Unsolved...food is totally out of the question.  
 
Hope you have good luck at the doc.  Let us know.
 
PF vibes,
 
Jean
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Re: Do I have clusters?
« Reply #11 on: Dec 27th, 2004, 8:18pm »
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Hi.  Welcome, but sorry you have to be here.  
 
Yes - Females get clusters.
Yes- Your symptoms somewhat fit the pattern for many here.
 
Read, read, read!  Print out what's pertinent and take it with you to your doctor's appointment.  
 
Start a headache diary.  This hasn't been mentioned much lately, but can be very important in your diagnosis.  Log the day, time the HA starts, how long it lasts, how intense it is (use the kip scale on the left), and what (if anything) helps.  Take your diary with you to the doctor.
 
If you can, stop taking narcotics and OTC meds - they cause rebound HA's.  Try ice, caffiene, etc. instead.
 
I also highly recommend this link for info regarding drug treatment for clusters.  Aborting HA's is great, but preventing them is even better.
 
http://www.future-drugs.com/admin/articlefile/ERN020304.PDF
 
Most of all, keep posting.  Many hugs.
 
Kris
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Re: Do I have clusters?
« Reply #12 on: Dec 27th, 2004, 9:41pm »
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If you do the O2  -- you need it on 8-12 liters per minute with a nonrebreathable mask (don't even try to use the nose thingys - they won't work at all).  
 
Talk to your neuro and take him all the information you have - go prepared. this site has almost everything known about CH.
 
Take the Cluster quiz on the left side of this page.  
 
Hope you get the help you need. And anyone who tells you women don't get CH are nuttier than a fruitcake. Most of the females on this site will let you know that we've definitely disproved that theory.  
 
PF days to you
 
Hugs BD
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135447360 135447360   mondocharlie   mondocharlie
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Re: Do I have clusters?
« Reply #13 on: Dec 29th, 2004, 1:48am »
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Yup.  
 
Re-reading this thread, it's pretty damn certain you have clusters. They do behave like clockwork for many. One of the most common forms seems to be about 1-1/2 hours after falling asleep. In any case they are usually dependable.  Also, you mentioned them going from a 1 to a 10 almost instantly. The same goes for when they ended for me but not quite as fast. They would go from a 10 to 1 in about a minute. Usually I'd feel cool and sweaty. There might be a slight lingering throb but it was nothing.  
 
You are in the right place. Here you don't have to worry that we won't understand. We know that calling them "headaches" has done us no good. We know that when you say "clusters," that it has no bearing on what others think of when you say "headache." We all thought of strokes, tumors, or hemorrhages  
 
Look around and let us know how you're doing.
 
Charlie
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Re: Do I have clusters?
« Reply #14 on: Dec 29th, 2004, 6:48am »
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Why did she delete herself?
 
If you are still reading Maggie, best of luck with the Neurologist.  Please keep us posted.  This is a great place for info, and support.
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