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        New Message Board Archives >> 2004 Cluster Headache Specific Posts >> WILL THESE GET WORSE?
        
(Message started by: LIVING4JESUS on Sep 16^th, 2004, 2:25pm)

Title: WILL THESE GET WORSE?
Post by LIVING4JESUS on Sep 16^th, 2004, 2:25pm

[smiley=huh.gif] [smiley=huh.gif]
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

Title: Re: WILL THESE GET WORSE?
Post by vig on Sep 16^th, 2004, 2:44pm

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....

Title: Re: WILL THESE GET WORSE?
Post by JJA on Sep 16^th, 2004, 3:14pm

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

Title: Re: WILL THESE GET WORSE?
Post by floridian on Sep 16^th, 2004, 3:55pm

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.

Title: Re: WILL THESE GET WORSE?
Post by don on Sep 16^th, 2004, 4:42pm

What are your symptoms?

Title: Re: WILL THESE GET WORSE?
Post by Bob_Johnson on Sep 16^th, 2004, 4:50pm

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!

Title: Re: WILL THESE GET WORSE?
Post by Margi on Sep 16^th, 2004, 5:00pm

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?

Title: Re: WILL THESE GET WORSE?
Post by nani on Sep 16^th, 2004, 7:48pm

Sorry but - if these headaches are not altering your life - I'd go out on a limb and say you may have been misdiagnosed. - Margi
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" [smiley=mellow.gif]. 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. :-/

Title: Re: WILL THESE GET WORSE?
Post by don on Sep 16^th, 2004, 9:01pm

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.

Title: Re: WILL THESE GET WORSE?
Post by nani on Sep 16^th, 2004, 9:42pm

OK :) Good point Don. Bad advice doesn't help anything.

Title: Re: WILL THESE GET WORSE?
Post by eyes_afire on Sep 16^th, 2004, 10:14pm

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

Title: Re: WILL THESE GET WORSE?
Post by LIVING4JESUS on Sep 18^th, 2004, 12:26am

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.

Title: Re: WILL THESE GET WORSE?
Post by LIVING4JESUS on Sep 18^th, 2004, 12:28am

on 09/16/04 at 22:14:50, eyes_afire wrote:

Hey Steve, I agree with you. Vanity will not be an option if pain increases.

Title: Re: WILL THESE GET WORSE?
Post by Jonny on Sep 18^th, 2004, 12:52am

symptoms?

..............................jonny

Title: Re: WILL THESE GET WORSE?
Post by LIVING4JESUS on Sep 18^th, 2004, 11:57am

on 09/18/04 at 00:52:04, Jonny wrote:

symptoms?

..............................jonny

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.

Title: Re: WILL THESE GET WORSE?
Post by Jonny on Sep 18^th, 2004, 12:15pm

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

Title: Re: WILL THESE GET WORSE?
Post by kissmyglass on Sep 18^th, 2004, 12:17pm

Sounds like CPH to me....hope so, it's easily treated with Indocin which is cheap and near 100% effective.

Good Luck

Kev

Title: Re: WILL THESE GET WORSE?
Post by LIVING4JESUS on Sep 18^th, 2004, 4:21pm

on 09/18/04 at 12:17:39, 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

Thanks, but help me out here... ?CPH? stands for????

Title: Re: WILL THESE GET WORSE?
Post by vig on Sep 18^th, 2004, 4:24pm

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.

Title: Re: WILL THESE GET WORSE?
Post by LIVING4JESUS on Sep 19^th, 2004, 12:06am

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