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        New Message Board Archives >> 2006-2007 Getting to Know Ya Posts >> Hello, new FROM Florida
        
(Message started by: ElizabethFL on Jun 29^th, 2006, 4:06pm)

Title: Hello, new FROM Florida
Post by ElizabethFL on Jun 29^th, 2006, 4:06pm

Hey everyone.

I have lurked here for quite some time, and over the past few weeks been dealing with another round of CH.

Went to my doc a few weeks ago and was a disaster. The dumba** prescribed me Effexor! Thought that my headaches were a result of anxiety. ::) Not to mention, didn't even warn me of all the horrible side effects of the drug. Needless to say I took it for one day and realized it wasn't for me.

I have a new appointment with a new doc tomorrow, hopefully one that undertsands my condition and can prescribe something that works, like Imitrex or something.

I would say I am about a 7 on the kip right now. Today was bad, I have had 5 episodes since about 3 AM. Had to call into work it was so bad. Normally I don't get them during the day, usually the times are 7pm, 3 or 4 am. I hope this is just the devil acting up for one day and not going to be the new schedule. :-/

Anyway, glad to be here and hopefully I can meet some people close to me and share experiences and help as well. :)

Title: Re: Hello, new FROM Florida
Post by marlinsfan on Jun 29^th, 2006, 4:09pm

Hi Julie, where are you? I'm in Hollywood. This document has all treatments for you to read, print, and bring to your new DOC. Demand Oxygen! Hi-flow regulator and non-rebreather mask is great for aborting a hit! Melatonin works great for me for controlling the night-time hits.

PF Wishes.
Jose

http://www.brightok.net/~mnjday/chtherapy.pdf

Title: Re: Hello, new FROM Florida
Post by Guiseppi on Jun 29^th, 2006, 5:21pm

Well hello from the west coast, california! The bad news is your new doctor may not know any more then your first doctor. There are sadly very few doctors with much CH experience.

It'syour job to read all the links on the left, print out that link that the poor misguided Marlins fan sent you, (that coming from a Padres fan!) It's an awesome compilation of some of the best treatments. Bring that to your doctor and use it to pick a treatment option for you. As Marlin man said, you need oxygen, it's been the "miracle" treatment for me to stop these things on a dime. I can abort in less then 10 minutes. I hope you find some relief, these things hurt like hell! Again, welcome.

Guiseppi

Title: Re: Hello, new FROM Florida
Post by dissident on Jun 29^th, 2006, 5:35pm

ElizabethFL,
Nice to meet you [smiley=wave.gif]. Marlinsfan is right. Demand oxygen! Anxiety headaches...LOL! If I were a mean spirit, I would wish a CH on every doctor that has given me or my cluster family the "get over it" song and dance (but I'm not).
Like the others have said, print out as much pertinent information as possible because chances are your doc won't have a good understanding of CH.
Oh yeah...where in Florida are you? I'm just outside of Orlando (about 6 mikes from Disney).

BJ

Title: Re: Hello, new FROM Florida
Post by maffumatt on Jun 29^th, 2006, 7:09pm

I only get the daytime hits when i start to peak, at least you know your on the downhill side of the cycle then. Hope your new doc is more helpfull than your last one.
Matt

Title: Re: Hello, new FROM Florida
Post by Weatherman on Jun 29^th, 2006, 9:23pm

Hello fellow Floridian!

Sorry to here we have more in common than the State we live in. We also have the problem of the state we live in. The CH state that is.

Anyway, I'm new here too but I can tell you this...take the advice of the people above. If the next doctor sucks, get another and another until you find the "one".

Get O-2. try melatonin, try kudzu, try anything!! :)

Good luck and WELCOME!

Doug

Title: Re: Hello, new FROM Florida
Post by ElizabethFL on Jun 29^th, 2006, 11:50pm

Thanks for all the replies. I am right outside of Orlando, Longwood to be exact.

Should I be asking for Imitrex? I don't see that anyone has mentioned it yet on this thread. [smiley=huh.gif]

And for the people in central FL, maybe you could refer me to a good doc around here?

I am almost glad I had these terrible bouts for the past few days, because as stated, hopefully this is the beginning of the end for awhile.

This started about 2 months ago, but before that I had been CH free for about 2 years.

Title: Re: Hello, new FROM Florida
Post by Weatherman on Jun 30^th, 2006, 12:33am

on 06/29/06 at 23:50:27, ElizabethFL wrote:

Should I be asking for Imitrex? [smiley=huh.gif]

The answer is ...maybe. I see it works wonders for some in here. It was a nightmare for me. My body couldn't tolerate it and I nearly had a heart attack. But I do have some heart and blood pressure issues so drugs like that often cause me trouble. If you don't have any of those issues, it might be good for you.

For me, I am trying everything I learn about that's not about hard core drugs. I don't like them and they don't like me. During my last episode I had very good results from Varapamil and Prednisone. The problem was the side effects. I gained weight and became very anxious and grumpy....but no pain!...an acceptable trade.

My current episode is in it's 2nd week. I just got the prescriptions for Varapamil and Prednisone but I havn't filled them yet. After reading in this sight I decided to try some other stuff first. I can always get the drugs if I need to. I just finished my 3rd day of Kudzu and tonight will be my 3rd night of Melatonin plus I have Oxygen. Last night I had no CH and slept through the night for the first time since this episode started. And I had no CH today!! It was a wonderful day!!! Tonight, I'll find out if I was just lucky or if I may be on to something. I've also had some luck with the "Taurin" laced energy drinks.

It's just one man's way of fighting this thing but it might give you food for thought. Like I said, I can always go back to the drugs if I need to but if I can do well without them, I'll feel a lot better in the long run and I can function better in my daily schedule.

Bottom line....I know how bad this thing is!! Do whatever it takes to find whatever works for you and go for it.

I wish you all the best!!

God Bless
Doug

Title: Re: Hello, new FROM Florida
Post by ElizabethFL on Jun 30^th, 2006, 9:27am

Thanks so much for all the info. :)

I am hoping as well that I am on my way out of this cycle. Last night was the first time in weeks that I spept a full 8 hours CH free! Woo hoo!

Hopefully it stays that way. :-/

Title: Re: Hello, new FROM Florida
Post by Richr8 on Jun 30^th, 2006, 11:21am

on 06/30/06 at 09:27:30, ElizabethFL wrote:

Last night was the first time in weeks that I spept a full 8 hours CH free! Woo hoo!

Welcome Elizabeth!

That's asure sign for me that I am moving out of cycle. I hope the same holds true for you.

Title: Re: Hello, new FROM Florida
Post by dissident on Jun 30^th, 2006, 6:02pm

I live in Davenport FL just miles from Disney. I have a doc in St.Cloud that I've been going to for a long time but I won't refer him to you (you can do better). He seemed very knowledgeable at first but his answer is always a long term, high dose script of Prednisone which is MUCH harder on my body than the so called "hard drugs". I'm going to try a different cocktail of drugs this time around. Like weatherman, my body can't handle Imitrex so I'll have to experiment. If you find a good doc please post it here! Keep us updated on what he prescribes and how well it works for ya. Hopefully your cycle is about to break and you won't have to worry about finding a doc just yet!
Sorry I'm not more help.

Title: Re: Hello, new FROM Florida
Post by Weatherman on Jun 30^th, 2006, 7:15pm

Well Elizabeth, these things are really something. I wrote you yesterday and said I wasn't taking my drugs but I was trying other methods. I had a CH free night and day yesterday.
Well last night the beast returned with a vengance!!! What a let down. It was so bad that I have thrown patience to the wind and started on the prednisol and varapamil. Looks like 6 more weeks of hell :'( But if the drugs work like they did last time, I should be pain free in a couple days. I'll be a fatter, grouchy, snippy, anxious bastard...but pain free :)
Sure hope your break from the pain is the real thing!!

Good Luck!
Doug

Title: Re: Hello, new FROM Florida
Post by ElizabethFL on Jul 2^nd, 2006, 2:22pm

Wow, I am so happy right now.

First of all, I decided NOT to go to that new doc the other day, only because I had a feeling that this cycle was winding down due to the peak I had the other day.

Since that day, I have had one major attack, and I was actually CH free all day yesterday! ;;D

So just about 15 minutes ago I felt one coming on. :( Ugh, I was expecting 45 minutes of absolute hell....well I stuck my head in the cold freezer for about 5 minutes, drank two ice cold glasses of water and it's gone before it even got really painful!

Keep your fingers crossed for me!

Title: Re: Hello, new FROM Florida
Post by Weatherman on Jul 2^nd, 2006, 7:58pm

They're crossed!!! Toes too!!! Way to go!

Good Luck
Doug