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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › Another newbie with successful treatment results..

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Another newbie with successful treatment results.. (Read 1607 times)

RonE

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Columbia, MO
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Another newbie with successful treatment results..
Aug 19^th, 2008 at 2:48pm

Hello Fellow Clusterheads,

I too am a newbie to the CH site. My name is Ron Edwards from Columbia, Missouri and am a 43 year old male. My first encounter with CH was only around 3 years ago. When I went to the doctor to find out what was wrong with me, they misdiagnosed me with migraines. After 18 months CH free, I received my first CH reality check an went screaming to the emergency room where I was properly diagnosed with CH. It has been 10 months since my last bout and I went through my second tour of CH around 10 days ago.

I have visited here before but am now enclined to be a part of the others in our short listed club. In reading what others go through, I can live vicariously through them and only nod my head as I have experienced the exact same thing.

After my last 2 bouts with the devil, I was given a prescription for short-term Prednisone use. With each of the last 2 episodes of standard 12:00am - 1:00am headache onsets, after the first day of the Prednisone, I did not experience the effects of CH. Obviously different treaments will work differently with each individual, but I thought compelled to share.

My recent experiences with CHs has left me to the point of tears and with each increasing painful eposide. This past Monday morning, I experienced 3 episodes in one evening where I was consumed with dispair. I've (at times) contemplated ending my miserable existence with dibilitating pain threasholds which I was sure would kill me. I resorted to taking Percocet for pain management but do not care for the effects of the drug as the only full-time working parent of our house. My episodes usually last for about 45 - 60 minutes with crawling scamper to the home office so I can be in complete darkness and whimper by myself. I took my Prednisone tablets yeasterday and for the first night in nearly 2 weeks, I slept through the entire evening.

I hope this entry serves to assist for those who experience what I have experienced. YOU ARE NOT ALONE and there are others who go through similar eposides. We are a small group, only 1 in about 15,000 suffer, making our group less than 22,000 for the United States alone. I feel for those who have not saught the assistance of this site and attempt to manage pain by themselves or worse yet, those who have no medical insurance and do not have the ability to seek treatment. I feel blessed for finding this site.

I shall continue to write as I find additional treatment options so others can find the relief they need. Thanks you for listening (reading) my personal plight.

Ron
Columbia, MO

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Potter CH.com Alumnus Offline Team MOOSE DROOL Stinky Stuff on a Hook Prostaff Posts: 3600 Blgs.Mt. Gender:	Re: Another newbie with successful treatment results.. Reply #1 - Aug 19^th, 2008 at 3:27pm Oxygen is my choice. Potter
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Jeannie

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St Louis, Missouri
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Re: Another newbie with successful treatment results..
Reply #2 - Aug 19^th, 2008 at 4:42pm

Hi Ron,

Welcome. Sorry you are having pain. I too find relief from CH while on Pred. However...... as soon as I taper off they come back. Please look into a preventative such as Verapamil. Taking Pred is helpful to remain PF while the Verap. builds up in your system. As Potter said, 02 is highly recommended around here. I have not yet tried it but understand that it is a miracle!

PF wishes,

Jeannie

"It's all a grand illusion when you think you're in control." ~ Kenny Chesney

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Guiseppi

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Re: Another newbie with successful treatment results..
Reply #3 - Aug 19^th, 2008 at 6:55pm

Welcome to the board, sorry you're hurting so much. Prednisone is used 2 ways, either as a short term burst to stop a cycle, (doesn't work that way for me but does for some),or as a transitional drug while slower acting prevents kick up in your system. (That's how I use it.) It is a harsh drug which should not be used long term as it has many many bad side effects.

Most people find the best way to manage these things is a 2 pronged approach.

1: a good preventative. that's a med you take while on cycle to reduce the intensity and the frequency of the attacks. I use lithium, 1200 mg a day, other popular prevents are verapamil and topomax, many others to read about here.

2: then a good abortive med. A headache starts now what? Your first line abortive should be oxygen. It's been the most effective for me with the least amount of side effects. The other effective abort for me is imitrex injectable, also available in a nasal spray.

For now, try slamming energy drinks at the first sign of an attack. Ones containing caffeine and taurine, many can abort or substantially reduce an attack this way. Get yourself on a magnesium supplement, many, myself included, have found they reduce the frequency and intensity of our attacks.

Welcome to the board, let's give you some tools to manage these things.

Guiseppi

"Somebody had to say it" is usually a piss poor excuse to be mean.

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thebbz Ex Member	Re: Another newbie with successful treatment results.. Reply #4 - Aug 26^th, 2008 at 2:04pm Please read. all the best thebbMultimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or
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Batch

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Bremerton, WA
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Re: Another newbie with successful treatment results..
Reply #5 - Aug 26^th, 2008 at 11:21pm

Ron,

Welcome aboard. You're fortunate to get a proper diagnosis in such a short time. I and many others suffered for years before a correct diagnosis brought us to this site.

Prednisone is a double edge sword that cuts both ways... It is a God send when it works as it has for you, but there's a price to pay if you continue using it beyond more than a taper.

Prednisone is most often prescribed as part of an overall treatment strategy for cluster headaches as a transitional therapy that's used for a short period of time while waiting for another preventative therapy to start becoming effective. It appears you've already discovered that we're all wired differently and that different medications have different levels of efficacy in reducing the frequency and intensity of our attacks.

Having said that, when it comes to abortives, the first therapy of choice for many of us is oxygen therapy followed by one of the triptans. If you've not received a prescription for oxygen, you would be wise to ask your PCP or neurologist for one at the first opportunity. Make sure the Rx reads as follows:

"Oxygen therapy with a non-rebreather mask at a flow rate of 15 liters/minute AS NEEDED for cluster headache attacks."

Having said that, many of us who are successful in controlling our cluster headache attacks effectively with oxygen therapy, use a flow rate higher than 15 liters/minute. Your PCP or neurologist can't prescribe flow rates above 15 liters/minute at this time, but we're working on that. In the mean time you can do like many other of us have done on our own and find an oxygen regulator capable of delivering at least 25 liters/minute. If you need help, please shoot me a PM and I'll be glad to provide the needed information on where to find regulators like this.

Take care,

V/R, Batch

You love lots of things if you live around them. But there isn't any woman and there isn't any horse, that’s as lovely as a great airplane. If it's a beautiful fighter, your heart will be ever there

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