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Margi
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Post from a New Guy
« on: May 20th, 2003, 11:35am » |
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Here is Dr2Ford's post from the Supporter Section, folks. I figured he'd get better response here...
Hi folks,
I found this site er rather my mom sent me the link to it and I've some questions that I'd appreciate some in sights on. Forgive me if this is in the wrong section. I'm 27 and had migrains years ago when I was very young and they all tappered off then over the last couple of years I've been getting violent head aches that I thought were just stress or something. Well after lossing a fight with my wife she finally dragged me to the doctor where this guy says I'm suffering from these cluster headaches. Well that's all fine and dandy but my problem is I'm not real sure that it actually is. All the research that I've done only fits half of my problems and I'm curious, for example: Everyone seems to have attacks at night, thus far I cain't recall ever having one at night, and folks seem to agree that the pain is always only on one side of the head, mine tends to jump from one side to the other at various times. I'm not sure what triggers things, though I know aggravtion, frustration, and anger really sends it off badly. I also noticed that folks during an attack can't sit still. I've only mildly had that problem, though usually I like to bury my head in something and just die. I've also never noticed either of my eyes tearing during one of the stabbing pains, and quiet honestly I'm not real sure I was able to describe the pain to the doc properly. I'm not sure I understand it from what I've read either.
For instance, this 'attack' started Thursday with what I thought was a migrain, lasted til Friday at that level of pain without the shooting pains, then Saturday morning the shooting pains started and have been jumping back and forth on my head til now, which is Tuesday. The best example I can give is like my head is burnt out coals that are just embers, and when I have a shooting pain it's like someone throwing gas on those coals and it flares into flame, then it ease's back down to the coals and there's only a little flame. Does that make any sense? It seems to me from what I gather with cluster headaches that the onset of the sharp pain is instant and fades quickly, and that's that. There's not any dull ache left over? I'm just bout to lose my self control with this though, feel very anxious like I need to do something.
I'd appreciate any input any of ya folks could give.
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nancyann
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Re: Post from a New Guy
« Reply #1 on: May 20th, 2003, 11:46am » |
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Wow, That 's pretty good. The only difference is mine is always on the left. Instead of a burning and flame I describe mine to the Dr. sort of like someone tapping on you slowly non stop just with one finger kind of like a poking then increasing in tempo until it becomes fast and furious until it slows down again. This is associated with pressure and burning. The burning pain is in the facial eye temple area ( What I will refer to as My cluster headache) and the tapping is what I will refer to as my migraine pain.
The migraine is all day the cluster pain hits me about 3-4 times a day on average. Meds have mostly stopped it from waking me at night although I wake up most mornings with it which is not so bad because I get up at 5:30 anyway. I am also getting seizures supposidely associated with the migraines) I am slowly learning to deal with it. However the last few days. I have been feeling like I am at my wits end. This place really helps a lot.
I guess my point is at this point in my life anway Nothing is out of the ordinary.
I wish you luck PFDAN's
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Linda_Howell
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Re: Post from a New Guy
« Reply #2 on: May 20th, 2003, 12:38pm » |
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Please note that none of us here are Dr.s and with that disclaimer:
The thing that popped out to me about your post is that you say say you only mildly "can't sit still" One of the symptoms of a cluster HA that we all share is that we CANNOT sit still. We can't just lie down and hope for it to go away. It ain't possible. The other thing is the length of time. Thursday til Friday? I suppose that's possible, but it isn't likely to have a cluster for that long.
I realize this doesn't help you much. It was just my immediate thoughts. Do you have a good Neurologist?
There are tests (MRI) that he can give you to rule out other things. Good luck to you and keep us all informed. We want to help, even if it's just to let you blow off steam. LindaH
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Kindness, is gladdening the hearts of those who are traveling the dark journey with us.
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ave
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You are something else, new guy!
To correct any false impressions:
Many of us have atacks in the day time too. I myself changed from nighttime to day time.
Some people have their headache side change from episode to episode, from attack to attack and sometimes even during an attack.
Some of us who get migraines too find that they mix with cluster headaches and "may "fill up the spaces" between cluster attacks. I myzelf have had these back to back attacks on occasion.
Then there is CPH which can mix with migraines etc. etc.
As Linda said, start with getting a knowledgeable neuro.
Try the Ouch site: http://www.clusterheadaches.org/doctors.htm
And great good luck with all of that going on.
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cathy
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Re: Post from a New Guy
« Reply #4 on: May 20th, 2003, 1:51pm » |
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Sorry your having such a bad time, hope you get a break from it all soon....welcome aboard!
Cathy 
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Charlie
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Re: Post from a New Guy
« Reply #5 on: May 20th, 2003, 9:45pm » |
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Welcome and sorry this thing is making your life miserablee. It sounds like CH to me. Stick around. You'll find good information here and ways to cope with this horror.
Charlie
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OneEyeBlind
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Re: Post from a New Guy
« Reply #6 on: May 20th, 2003, 10:02pm » |
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Well, my guess would be it can't just be clusters. The attacks are too long, and the pain not excrutiating enough to depict just clusters. Also, you don't have the fire engine nail pick in your eye. Take a look at the link provided above, and good luck ........ any pain is a pain. Oh, by the way ... I ain't no doc ... so get yourself to a neuro to really decide what you have !!!!
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Snappy
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Re: Post from a New Guy
« Reply #7 on: May 20th, 2003, 11:08pm » |
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I am a new guy here myself. In fact this is my first post, but I have had CH for over 20 years. My friend this does not sound like clusters to me. Could be CH plus something extra. Get a MRI and of course a good Nuro. I read many posts here before I ventured in and was surprised to see so many people who suffer like I do. Mostly we all have very classic symptoms, and yours sound very different from the norm. Not that there is anything normal about these horrible things. However, after I have a couple of CH's my head does get tender to the touch, like I really was hit hard on the head and it stays until the cycle is over. Not a shadow, but a real physical sensitivity. Weird. Good luck to you, but look into it deeper.
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