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Digital Scream (Read 3413 times)

NeurologicHarpoon

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Digital Scream
Mar 1^st, 2011 at 2:42pm

....is all I can manage. I'm trying to be good and not log off the phones and hide in my call center's bathroom but I might have too.

I've been taking 1x/day 120mg Verap since Feb 25th. Since that day, I have noticed a reduction in the intensity and duration of my attacks. i don't want to attribute that to the Verap seeing as it takes a while to build up in my system. I have a feeling maybe my cycle was coming to a close conveniently at the same time I saw my doctor finally.

Fast forward to today. I've been keeping my regiment of Verap as my doc asked, and keeping my pain journal but I haven't been touching my Suma. Cause I don't want those damn pills. F*** them. I was only perscribed 9 and took 2 on my first day and like I noted in a prior post, it didn't work.

Well as I'm typing this the headache just freaking left. Like it was never there. Now I'm getting really agitated.

I was half tempted to call my doc up and say I think we misdiagnosed and I don't have CH, but lets try Indomethacin because I might have CPH. The reason I was on this train of thought is because since my February 25th visit, I felt the reduction in intensity and frequency. I keep getting them now at the same times of day and they are all kip7-8 but they only last for 30 seconds up through roughly 10 mins.

So that's why I think CPH but then today I had a CH kip 7 that lasted over 45 mins. I'm so lost now as to what to do. I know I have no past headache history except for 1 month. So I can't say if I'm episodic or chronic. What if i'm in a "low" cycle and I'm chronic and I just don't know yet. Or what if I am episodic and this cycle is almost over, then is the Verapamil pointless?

I'm just ranting cause i'm in a lot of pain right now. now. now.; no. reffinf now!@!!

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NeurologicHarpoon

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Re: Digital Scream
Reply #1 - Mar 1^st, 2011 at 2:47pm

thanks for listening to my annoying rant. I don't wanna be a grip for anyone, but I feel this board is the closest home I have right now. Noone around me understands; I had a cooworker come by, cause she noticed I was ramming my palm into my left eye and shaking my leg super fast and grtting my teeth while I was on a phone call with a customer, and asked if I was alright after the phone call. Told her I was having a CH and she just said "Ahh, a migraine? I've got some excedrin if you want some. It'll knock it right out *smile smile*"........

I wanted to tear that smile off her face. I'm going to go hide now and calling my doctor tomorrow and talk to him more and try to get a referral to a Headache Specialist. Hopefully I can get one in OHSU; that would rock immensely. I understand this is just the beginning of diagnosis of wether or not this is CH; but diagnosis or misdiagnosis, head pain in general is not acceptable and I should be allowed to have treatment just as much as the next guy and it should be effective treatment.

RAWR RAWR RAWR! Angry

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Brew CH.com Sponsor CH.com Alumnus Offline Posts: 14163	Re: Digital Scream Reply #2 - Mar 1^st, 2011 at 2:50pm Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to or Print 5 or 10 copies. Keep them with you. Give one to anyone who is interested.
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Batty CH.com Veteran Offline I thought it was CH...but my helmet is too tight! Posts: 210 E'Port Cheshire UK Gender:	Re: Digital Scream Reply #3 - Mar 1^st, 2011 at 3:14pm HI NH, Quote: the closest home I have right now Come and sit down in my/our house, we will listen and do our best for you... The Calvary will be round soon! Milk and sugar? Respect Gary
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NeurologicHarpoon CH.com Newbie Offline I Love CH.com! Posts: 16 Salem, OR Gender:	Re: Digital Scream Reply #4 - Mar 1^st, 2011 at 3:20pm "I haven't had sugar in my tea since 1982" : quote the movie and I'll give you a cookie. Just want an ear and your collective ear is wonderous, so I thank you Well Batty, I'll pull up a chair and stay a while. Since work won't let me go home, or else they'll fire me. This is some B.S. I tell you what.
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Jeannie

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Re: Digital Scream
Reply #5 - Mar 1^st, 2011 at 3:42pm

Hey there,

Sorry you're having a rough time of it. Your Verap is at a very low dose. Has your doc told you to eventually increase it? Have you asked about o2 yet? You can get a set up to keep in your car or even in the office..... Used correctly you could be pain free in a very short time.

There is no point in worrying if you are chronic or episodic. Just worry about finding a way to manage your pain so that you can live your life. Sounds like part of that may be to either force your doctor to listen to what you have and will learn here or, find a new doctor.

Always remember..... It WILL get better.

PF wishes,

Jeannie

edited for spelling

« Last Edit: Mar 1^st, 2011 at 4:13pm by Jeannie »

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

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NeurologicHarpoon

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Re: Digital Scream
Reply #6 - Mar 1^st, 2011 at 4:05pm

He hasn't said. he said we're gonna meet again on 03/31/2011 to do a follow up and see how the meds are working. He didn't say anything about increasing the amount.

I should stop being stupid and just make a sooner appointment and let him know it's not working, I guess. I mean I know I have to let it build up but at the same point; Jeannie you are the third person who has told me (maybe the 4th) that the Verap dose is too low.

And I discussed briefly o2 with my doc, but he didn't seem to really go for it. Kept bringing up the fact that a lot of insurance companies don't recognize CH so they won't give o2. so that right there dashed my hopes so I decided to give up. Maybe I don't deserve to attempt to use o2
since I'm not getting kip9s and 10s every day, right? I'm only a minor sufferer huh? Shouldn't matter. suffering is suffering and I should be allowed pain managment. Who knows, maybe my treatment is o2 regardless that my head isn't a smoking crater by now. Won't know till I can try but I can't afford to try out of my own pocket. I don't have 2-3K for a setup. I'm very angry right now, just getting it all out.

But overall, I agree Jeannie. I would love a way to manage the pain better than slamming my face into the desk and ducking out every couple hours.

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Batty

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Re: Digital Scream
Reply #7 - Mar 1^st, 2011 at 4:14pm

Bullshitsville
Capital of Bullshits City (have the city map tattooed on the back of my left eye!)

Agree with Jeannie NH,
The advice you will get from these Peeps on here is more than you could get from a 1000 GP's!

And WE excel at listening mate!

Always remember this, there are 2 things you and the 'demon' knows

#1 It wont kill yer...
#2 It will go away...

You will be left in tatters (we are all Vets in this feeling)

One of mine "Pain, is just weakness, leaving the body!..."

If you are ever in a K10,bottom lip trembling,tears flowing down your cheeks, sobbing like a child..
(STBXW stepping over you in the hall..)

Just grit your teeth and say "COME ON, IS THAT THE BEST YOU'VE GOT?"

Respect and gritted teeth mate

Gary

"An old Wolf may lose his teeth, but never his nature.."

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NeurologicHarpoon

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Re: Digital Scream
Reply #8 - Mar 1^st, 2011 at 4:22pm

(STBXW stepping over you in the hall..) (i feel I missed this reference Sad

)

Gary, that is the best addage I've heard to use at work. I will challenge the Demon every time.

I also chant this in my head at times "Just because you're coming at me, doesn't mean I'm backing down." And most the time I can bolster myself to get through it, but then there are "THOSE" times, and well......you can finish the rest.....

Many a gritted teeth and thanks Gary.

-Chris

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Jeannie

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Re: Digital Scream
Reply #9 - Mar 1^st, 2011 at 4:25pm

Unfortunately, with this condition, it is up to us to be in charge of our treatment. We learn what we can and we present it to our doctors in hopes that they are willing to give us what we need to live with CH. If they are not willing, it is time to find one who is. It's up to you to be your own advocate.... Call him and tell him you need to find a way to manage your CH.....now.

Jeannie

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

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Batty CH.com Veteran Offline I thought it was CH...but my helmet is too tight! Posts: 210 E'Port Cheshire UK Gender:	Re: Digital Scream Reply #10 - Mar 1^st, 2011 at 4:41pm Chris Salute and 'Man hug' And, your'e talkin too much ! Quote: Just because you're Then punch,HARD!.... With you mate Strength in numbers (always wins!) Respect Gary
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Batty CH.com Veteran Offline I thought it was CH...but my helmet is too tight! Posts: 210 E'Port Cheshire UK Gender:	Re: Digital Scream Reply #11 - Mar 1^st, 2011 at 4:56pm NeurologicHarpoon wrote on Mar 1^st, 2011 at 3:20pm: "I haven't had sugar in my tea since 1982" : quote the movie and I'll give you a cookie. Shaun of the Dead (2004) Who said "I have seen things you people wouldn't believe..." Is there Choc chips in that cookie? Respect (Now we're smiling!) Bonus! Gary
Back to top	« Last Edit: Mar 1^st, 2011 at 4:59pm by Batty » "An old Wolf may lose his teeth, but never his nature.." IP Logged

NeurologicHarpoon CH.com Newbie Offline I Love CH.com! Posts: 16 Salem, OR Gender:	Re: Digital Scream Reply #12 - Mar 1^st, 2011 at 4:57pm was able to get scheduled to get off work in 2 hours. Thank god. Jeannie - calling doctor when I get off work. Thanks for the kick in the ass I needed. Gary - I am a motor mouth it seems Will post later after I talk to the quack.
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Batty CH.com Veteran Offline I thought it was CH...but my helmet is too tight! Posts: 210 E'Port Cheshire UK Gender:	Re: Digital Scream Reply #13 - Mar 1^st, 2011 at 5:00pm Your success in being PF is all we are here for mate! Strength in #'s Gary
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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Digital Scream Reply #14 - Mar 1^st, 2011 at 5:01pm Had a friend do the same for me when I first joined. Jeannie
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Glassman

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Re: Digital Scream
Reply #15 - Mar 1^st, 2011 at 6:39pm

Who said "I have seen things you people wouldn't believe..."

Oh Oh... Me! Me!
That was Rutger Howard in Blade Runner. On of me favorite movies!! Smiley

Chris, I agree with Jeannie, if your Doc won't take your suggestions it may be time to find a new one. I work with two doctors. One is a native Chinese acupuncturist who is also a D.O. and I usually ask him for medications when I'm in an emergency because he's easier to reach and quicker to respond.
My other doc is a D.O. who acts more like an M.D. I see him when I really want feedback on new medications that I learn about from searching this message board. He also is ready and willing to listen to me (very important and VERY rare) and is more up on various medications than the other doc.

You may even want to consider getting a welding O2 set up for which you don't need a prescription and will be cheaper. Just don't tell the supplier what you want to use it for.

Maine Coon Cat Crazy

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Batty

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I thought it was CH...but
my helmet is too tight!

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Re: Digital Scream
Reply #16 - Mar 1^st, 2011 at 6:41pm

Glassman wrote on Mar 1^st, 2011 at 6:39pm:

Who said "I have seen things you people wouldn't believe..."

Oh Oh... Me! Me!
That was Rutger Howard in Blade Runner. On of me favorite movies!! Smiley

Glassman, what was Rutger Hauer's name in the film?

How many in your party?
Do you like Thai?
Please bring your own O2

Hands (and heads) over the sea mate!

You make my f____g day!

Gary

« Last Edit: Mar 1^st, 2011 at 6:45pm by Batty »

"An old Wolf may lose his teeth, but never his nature.."

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NeurologicHarpoon CH.com Newbie Offline I Love CH.com! Posts: 16 Salem, OR Gender:	Re: Digital Scream Reply #17 - Mar 1^st, 2011 at 6:53pm Damn phone calls today and a Kip 7 that just lasted 1hr. God I'm drained. Good thing I get outta here in 10 mins. I totally was gonna post Blade Runner but Glassman beat me to it Gary - As many chocolate chips as you want. Heck I kinda want some cookies now.
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Batty

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I thought it was CH...but
my helmet is too tight!

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Re: Digital Scream
Reply #18 - Mar 1^st, 2011 at 7:28pm

NeurologicHarpoon wrote on Mar 1^st, 2011 at 6:53pm:

Kip 7 that just lasted 1hr

I really, really dont know HOW ON EARTH we get through through this shit?

The worst was three hours,it doesn't matter the scale..I would rather have k10 for 10 mins than k3 for 3 hours....I think after an hour,I flatlined..would have sold my soul to the devil
(maybe I did,cant find the receipt!)

Unless you are on the right meds.O2 etc...

All I can say in your defence, is to sleep WHENEVER you can!
You need to re-charge for the next time...

Bro

Gary

"An old Wolf may lose his teeth, but never his nature.."

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Skyhawk5

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Re: Digital Scream
Reply #19 - Mar 1^st, 2011 at 7:39pm

Neuro-Harpoon, Just in case you need this. My Neuro and life saver for 20 yrs, is now located at the Corvallis Clinic, Corvallis, Or. Ph#541-764-1274. He's not a titled headache specialist but knows his stuff, O2 etc. About 30mi SW of Salem.

Tell him Don Stierle (Sterly) sent you and hug him for me.

Good luck, Don

edited to correct..

« Last Edit: Mar 1^st, 2011 at 7:45pm by Skyhawk5 »

Though I walk through the valley of the shadow of the Beast , I have O2 so I fear him not.

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Batty CH.com Veteran Offline I thought it was CH...but my helmet is too tight! Posts: 210 E'Port Cheshire UK Gender:	Re: Digital Scream Reply #20 - Mar 1^st, 2011 at 7:54pm Skyhawk Communication... We are getting there! Gary
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Glassman CH.com Veteran Offline I Love CH.com! Posts: 203 Ohio Gender:	Re: Digital Scream Reply #21 - Mar 1^st, 2011 at 8:24pm Good on ya Skyhawk! Neuro-harpoon, I hope you get some good help now! Batty, his name was Roy!
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Batty CH.com Veteran Offline I thought it was CH...but my helmet is too tight! Posts: 210 E'Port Cheshire UK Gender:	Re: Digital Scream Reply #22 - Mar 1^st, 2011 at 8:50pm Skyhawk5 wrote on Mar 1^st, 2011 at 7:39pm: Tell him Don Stierle (Sterly) sent you and hug him for me. 'man hugs eh? Listen up Chaps/Guys/Blokes.... Just remember this.. "A man does not fail unless he fails on the inside" Domo, arigato Sensei. Shane.... Respect Gary
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Batch

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Control The Beast With
O2 & D3 You Must

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Re: Digital Scream
Reply #23 - Mar 2^nd, 2011 at 7:07am

Hey Don,

Good on you... I didn't realize you lived in Corvallis, OR. I was born there... and lived at the family homestead in Corvallis called Point Lookout until I was 5.

NH... Slow down and take a few deep breaths of oxygen... then you might want to ask your doc about bumping your vitamin D3 intake up to 10,000I.U./day along with some Omega 3 Fish Oil.

It's done wonders for me and there are several others giving this same regimen a try with similar results.

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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Bob P CH.com Hall of Famer Offline Shut up Bob! Posts: 4573 Clio,California Gender:	Re: Digital Scream Reply #24 - Mar 2^nd, 2011 at 8:13am There are people who take verap 1200 mg/day before it works. I don't think I've ever heard of anyone who had success at 120 mg/day.
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