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Topic: WILL THESE GET WORSE? (Read 441 times) |
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LIVING4JESUS
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WILL THESE GET WORSE?
« on: Sep 16th, 2004, 2:25pm » |
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[color=Blue][/color] 
Hey, I have just been diagnosed with cluster headaches 2 weeks ago. I may have been experiencing these mildly for a couple of years, but always disregarded it as a "have to deal with it" sinus problem. After reviewing the "kip scale", I am only at a 3- life is not altered for me. After reading different info here, I know that I am very minor to most, but was wandering is this only the beginning or did most of yours start off small and get worse? My doctor started me off on a small dose of prednisone. Sorry to be vain, but I hate taking it. It makes me want to eat like a horse and if I do so I am sure I will look like a horse shortly. The prednisone did help last cycle- I only took 2 and this week, I took one because the next day the CH was not hard to cope with, so I skipped that day. Now, today it is coming again. I am very blessed with not much pain according to most of what I have read with what you all deal with, but will I be posting like that shortly? "Pray without ceasing" 1 Thes 5:17
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1 Sam 12:24 "Only fear the Lord and serve HIM in truth with all your heart: for consider how great things HE hath done for you." Think on the good and you can't help but thank HIM!!!!! Jesus Saves!
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vig
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Re: WILL THESE GET WORSE?
« Reply #1 on: Sep 16th, 2004, 2:44pm » |
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for many, it is progressive, I started out small and after a couple of years, it was...not small.
read up, study, BEWARE of prednisone. It DOES help many but at great expense to other parts of you.
welcome....
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JJA
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Re: WILL THESE GET WORSE?
« Reply #2 on: Sep 16th, 2004, 3:14pm » |
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My CH started slow and got worse, but more in a frequency way than a pain level way. At first I only got headaches on Saturday morning when I tried to sleep in. They became more and more frequent over the first few years, but they were always above a kip 3.
It is not written in stone that you will get worse. Try not to worry about it. I lost a good month of my life obsessing over that. Hopefully you will never see a kip 4.
I'm not sure if I understood your post correctly, but if you are skipping doses of prednisone you might want to check with your doctor. Pred is a taper off type of drug where stopping suddenly and skipping doses is not advised. Sorry to be "preachy".
-Jesse
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floridian
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Re: WILL THESE GET WORSE?
« Reply #3 on: Sep 16th, 2004, 3:55pm » |
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No way of telling what the cluster future holds for an individual. My patterns have been pretty steady, and I sometime skip a year.
They are right about the prednisone - effective, but side effects, and dangerous if you don't follow a prescribed taper.
If most of your headaches start at night, consider melatonin.
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don
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Re: WILL THESE GET WORSE?
« Reply #4 on: Sep 16th, 2004, 4:42pm » |
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What are your symptoms?
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Bob_Johnson
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Re: WILL THESE GET WORSE?
« Reply #5 on: Sep 16th, 2004, 4:50pm » |
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Floridian is on target: these are safe meds if you use them correctly. Every med can cause problems when abused and misused.
Honestly, your question is a waste of energy. Predicting the future is impossible: apply the same question to your religious faith and what do you get?
Put your energy and time into learning about cluster, exploring the info here and on OUCH re. treatments and you will see some progress. Promise!
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Bob Johnson
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Margi
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Re: WILL THESE GET WORSE?
« Reply #6 on: Sep 16th, 2004, 5:00pm » |
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Please don't interpret my comment to be rude - certainly not my intention, ok?
Sorry but - if these headaches are not altering your life - I'd go out on a limb and say you may have been misdiagnosed.
Pred certainly isn't usually the first drug to be tried, either - I would think an abortive such as imitrex or oxygen would be a better first line of defense. Sounds like your doc may not be up to speed on clusters?
And I echo the warning - do NOT skip Pred doses if you have to be on it at all. It's not a med to mess with - trust me, it will mess with YOU if you do. Please be careful.
Take the cluster quiz and, I agree with Don - what ARE your symptoms?
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nani
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Re: WILL THESE GET WORSE?
« Reply #7 on: Sep 16th, 2004, 7:48pm » |
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I would have to disagree Margi - my first clusters were episodic and kip 7 or 8, I've been chronic for about 4 years now and I can say that most are kip 3-5. I am pretty much able to function normally - except for what I call the Neurontin "glaze"  . I still have to use Imitrex now and then, for the "big" ones but all in all this level of pain is something you kinda learn to live with. 
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don
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Re: WILL THESE GET WORSE?
« Reply #8 on: Sep 16th, 2004, 9:01pm » |
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Thats not the point nani.
If Living has been misdiagnosed, and it sure sounds it to me, then he or she is seeking help in the wrong place and could easily be given bad advice with good intentions.
Still waiting on the symptoms though.
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nani
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Re: WILL THESE GET WORSE?
« Reply #9 on: Sep 16th, 2004, 9:42pm » |
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OK  Good point Don. Bad advice doesn't help anything.
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eyes_afire
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Re: WILL THESE GET WORSE?
« Reply #10 on: Sep 16th, 2004, 10:14pm » |
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If you really do have CH, get ready for a nasty ride. You will lose your 'prednisone vanity' in short order. CH has a way of humbling me in a hurry. Typical Clusterhead: Crying on the floor, banging head, begging for anything to get rid of the pain.... and I mean anything.
I hope you don't have this.
--- Steve
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LIVING4JESUS
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Re: WILL THESE GET WORSE?
« Reply #11 on: Sep 18th, 2004, 12:26am » |
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thanks for response, yes I am aware that pred is not always the best regarding side affects... did studies on it. But I've only 4 1/2 pills left with no refills... so we'll see what's next.
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1 Sam 12:24 "Only fear the Lord and serve HIM in truth with all your heart: for consider how great things HE hath done for you." Think on the good and you can't help but thank HIM!!!!! Jesus Saves!
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LIVING4JESUS
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Re: WILL THESE GET WORSE?
« Reply #12 on: Sep 18th, 2004, 12:28am » |
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on Sep 16th, 2004, 10:14pm, eyes_afire wrote:If you really do have CH, get ready for a nasty ride. You will lose your 'prednisone vanity' in short order. CH has a way of humbling me in a hurry. Typical Clusterhead: Crying on the floor, banging head, begging for anything to get rid of the pain.... and I mean anything.
I hope you don't have this.
--- Steve |
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Hey Steve, I agree with you. Vanity will not be an option if pain increases.
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1 Sam 12:24 "Only fear the Lord and serve HIM in truth with all your heart: for consider how great things HE hath done for you." Think on the good and you can't help but thank HIM!!!!! Jesus Saves!
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Jonny
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Re: WILL THESE GET WORSE?
« Reply #13 on: Sep 18th, 2004, 12:52am » |
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symptoms?
..............................jonny
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LIVING4JESUS
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Re: WILL THESE GET WORSE?
« Reply #14 on: Sep 18th, 2004, 11:57am » |
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on Sep 18th, 2004, 12:52am, Jonny wrote:symptoms?
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Sorry, I had emailed symptoms to other CHer.... first epi- sharp pains that makes you wanna hold your head or press the area, above left eye on forehead that lasted approximately 15 seconds or so, then would go away. happened about every 2 hours or so. lasted about a week, then stopped. I wrote it off as sinus problem due to the extreme fluid build up in my left ear (by the way, this fluid is like swimmer's ear, but is not seen my doctor-but I know it's there~~ just tilting my head can make my ear fill up) My family was concerned about if truly sinus or not, so I went to MD, hoping maybe it wouldn't happen again. Then couple days later after MD visit (about 6 days), it started again. So I took pred for 2 days. pain ceased to a tolerable level, so I didn't take pred anymore. til few days later, had started again.
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1 Sam 12:24 "Only fear the Lord and serve HIM in truth with all your heart: for consider how great things HE hath done for you." Think on the good and you can't help but thank HIM!!!!! Jesus Saves!
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Jonny
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Re: WILL THESE GET WORSE?
« Reply #15 on: Sep 18th, 2004, 12:15pm » |
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If you are saying that the pain only lasts 15 seconds you should be looking into CPH, It in no way sounds like CH to me....but im no doctor
..................................jonny
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kissmyglass
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Re: WILL THESE GET WORSE?
« Reply #16 on: Sep 18th, 2004, 12:17pm » |
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Sounds like CPH to me....hope so, it's easily treated with Indocin which is cheap and near 100% effective.
Good Luck
Kev
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LIVING4JESUS
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Re: WILL THESE GET WORSE?
« Reply #17 on: Sep 18th, 2004, 4:21pm » |
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on Sep 18th, 2004, 12:17pm, kissmyglass wrote:Sounds like CPH to me....hope so, it's easily treated with Indocin which is cheap and near 100% effective.
Good Luck
Kev |
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Thanks, but help me out here... ?CPH? stands for????
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1 Sam 12:24 "Only fear the Lord and serve HIM in truth with all your heart: for consider how great things HE hath done for you." Think on the good and you can't help but thank HIM!!!!! Jesus Saves!
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vig
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Re: WILL THESE GET WORSE?
« Reply #18 on: Sep 18th, 2004, 4:24pm » |
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Chronic Paroxysmal Hemicrania Headache.
Cluster headaches are closer to an hour.
The 15 seconds symptom was a dead give away.
http://www.emedicine.com/neuro/byname/chronic-paroxysmal-hemicrania.htm
indomethacin is the drug of choice and a good indicator for diagnosis.
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| « Last Edit: Sep 18th, 2004, 4:26pm by vig » |
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LIVING4JESUS
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Re: WILL THESE GET WORSE?
« Reply #19 on: Sep 19th, 2004, 12:06am » |
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Thanks, Vig,
Interesting information on site regarding CPH. Just today, one of the symptoms I had not mentioned was a muscle jumping, just in past few days, not all the time but some, around my left eye. Same side of pain. Jesus knows my every need and HE never fails. HE IS TOO WISE TO MAKE A MISTAKE AND TOO GOOD TO DO ME WRONG!!! I am glad I got saved and accepted Jesus as my personal Saviour. HE's all I need. And He will make a way for me. I love the Lord!
Thanks again and we'll see what the future holds,
LIVING4HIM
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1 Sam 12:24 "Only fear the Lord and serve HIM in truth with all your heart: for consider how great things HE hath done for you." Think on the good and you can't help but thank HIM!!!!! Jesus Saves!
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