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TheVerbalArchitect

Re: V.A. Update!

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You guys are pretty self-righteous. The guy didn't say anything nasty or evil, just a little naive. How do you think he's going to feel about you when he reads your post, Potter. I know, I know - you don't care, just trying to be funny and cool. You're not.

-T

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You guys are pretty self-righteous. The guy didn't say anything nasty or evil, just a little naive. How do you think he's going to feel about you when he reads your post, Potter. I know, I know - you don't care, just trying to be funny and cool. You're not.

-T

Piss up a rope Chris.

      Potter

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we are all human here, and after the same goal, its frustrating sometimes, im sure we all agree. and i apologize for my comment it was unnecessary and out of line

text can be precieved many ways and sometimes in ways we did not intend or expect, though we are still responsible

AO

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Someone in my area is providing me with a mask (Paramedic Friend) and I have found a supplier of O2 who is cool with me buying. Starting O2 on Friday.

Glad to see you're getting the O2 - hey if that's a demand valve sort of contraption that your paramedic friend is getting you, that could really be an excellent thing! (I'm just saying this because I know Joe/Giussepi got one from a paramedic. If it's just a regular old mask though and you have to get your own high flow regulator, oh well you'll be in the same minor league with most of the rest of us, including me.  :D)

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I'm so glad to see you back, VA. Hate to lose a contributing member.

Make sure you get at least a 15 LPM regulator...you need a high flow and as close to 100% O2 as you can get, which is where a good mask comes in. You don't want ambient air seeping in, reducing the O2 purity. It's a great abort for many. You'll have to try different durations to see what works for you, but there's no risk staying on for 30 mins or more at a time if you need to (other than using up all your O2).

Most of us avoid alcohol when in cycle (or always for us chronics) because it's a known trigger.

-T

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Dude!

Glad you are back. 

Don't pay attention to the idiot behind the curtain!  You need to be here, and don't let ANYONE chase you off!

I completely understand about trying to get the most out of your PF time.  That is how the sufferers I know get through.  You have to forget the pain, and soak up all the good you can.  It'll get you through the next bad time.  Might be a good idea, however, to find less destructive ways to build up your emotional "bank account".  In the end, you pay the price :).  A little "mom" advice. 

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    Very glad to be back,you guys make me feel right at home ;) STILL have not got my RCs,should get them today,detoxing with coffee,Red Bulls,Vitamin water (LOTS). Shadows are constant. No beast last night,thank god.But the two nights before I awoke with beasts in the night. AO suggested I lay cluster side up when I feel pressure, I slept like that last night (maybe prevented the beast,not sure). As far as O2 goes I know excactly what I need thanks to you guys,like I said should be getting my 02 stuff on friday but not 100% positive. My girlfreinds aunts (twins) are both paramedics they have both also been a great help with getting me set up and being there for me.

Hope everyone is is doing ok this morning

The V.A.

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Anudda ting, sometimes when im not getting attacks I get what some have called a silent attack A.K.A. constant floaters on my cluster side. Anyone else have this? back when my clusters started when I wasn't yet diagnosed (Recently diagnosed by neuro 3 months ago but I have had them for 4 years miss-diagnosed ) I had my eyes checked but they were fine.

Just wondering

The V.A.

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Interesting article Bob... kind of changes the way to look at the autonomic symptoms. I always thought they were reactions to the pain.

VA, assume you get the floaters more intensely when sleepy or in dim light. That's pretty normal. If the eye doc didn't see a retinal tear, it's probably more related to rubbing your eye too much. I've had floaters for years after getting kicked in the head sparring in karate. I had a partial tear.

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Hmmm,I have some in the bathroom, I just don't use it all the time.Didnt know it worked for that kinda thing. Tonight I will try the melatonin.

melatonin is strange, through my short time here i have heard mixed reviews, some have wonderful success, some partial, some none at all and it makes things worse

ive also read, some melatonin supplements are better than others, on the bottle i have says to use for at least 2 weeks before its really gonna make a difference but not to use longer than 8 weeks at a time, it should be taken every night at the same exact time, 

heres a little info from a sleep disorder site  http://www.talkaboutsleep.com/circadian-rhythm-disorders/circadian-rhythm-sleep-disorders/10-how-to-use-melatonin-correctly.htm

on this page is says not to use for more than 2 weeks at a time, i dont know, theres mixed reviews but definately worth a try

AO

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     Interesting article, I get floaters most times if I use an abortive. Almost like it puts on cap on the pain but you know its still there.Still all other symptoms occur but with a lot less pain. Ill get the floaters for like a strait week, very intense floaters though and i get them all day,not just when I'm tired or sleepy. Any of my pain free days usually contain floaters.I know its nothing to worry about but its and interesting topic and VERY annoying .

The V.A.

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3 attacks yesterday,took my first dose of R.C. seeds (25) yesterday evening,soaked them in water/lemon juice for four hours after mortar and pestle.Spent all day yesterday talking to nurses,got a call back from my primary saying they want me to do o2 "trails" drive 20 mins to their office when I feel one coming.They said they are not sure if o2 will work for me so they want me to do these "trails".Im confused and frustrated at this point,why cant they just prescribe me o2?

The V.A.

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Howdy new here .I got Rc Seeds for Joanna and they dont seem to be doin any good. I hate bein helpless and wish I could help more.  The neuro wont supply o2 and it doesnt seem to help much at all.  Tried the mush rooms and still Kip 10 attacks

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Howdy new here .I got Rc Seeds for Joanna and they dont seem to be doin any good. I hate bein helpless and wish I could help more.  The neuro wont supply o2 and it doesnt seem to help much at all.  Tried the mush rooms and still Kip 10 attacks 

Busting can be a long process. Every 5-7 days. For some it can take months to achieve. It's not a "one and done" proposition. If you were under that impression, you need to do more reading at this site.

If your doc won't prescribe O2, get it yourself from a welding supply house. If you're uncomfortable telling them it's for welding, then tell them you use it to keep live bait alive longer.

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VA, another compelling article to take/fax/email to your doc would be http://jama.ama-assn.org/content/302/22/2451.full.  It seemed to help with my daughter's doctor when we shoved both articles in the doctor's face (politely, but insistently).  I don't know why they won't give it to you. One thing it says in this article is >>>The great advantage of oxygen is that it has no established adverse effects<<<

Are your hopes for getting O2 from other sources fading (I was thinking today was gonna be the day)?

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Another cheap way to process the seeds is to go to your local Goodwill or Salvation Army store and buy a used pepper mill. Got mine for $2.99. Beats the shit out of grinding manually.

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