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Shot down(again)...ranting/rambling.UPDATE!


John
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John; I think the consensus is that your doctor is an unfeeling idiot. I will only weigh in on one thing:

I have no experience of using seeds with licorice root. I have to admit to not being crazy about seeds in the first place. (I am a big fan of the psylocin indoles, though). I think there are probably too many variables in extraction methods, and a bunch of other things that are not pertinent here.

I merely wished to confirm this: If you take the tincture you will know whether its working for you in very short order. If you still wish to bust, I would advise, just to be prudent, to lay off the tincture to do so, as I have no idea how they would react synergistically. The tincture will show definite results within twenty minutes or so.

Good luck and fire your fool of a GP.

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John; I think the consensus is that your doctor is an unfeeling idiot. I will only weigh in on one thing:

I have no experience of using seeds with licorice root. I have to admit to not being crazy about seeds in the first place. (I am a big fan of the psylocin indoles, though). I think there are probably too many variables in extraction methods, and a bunch of other things that are not pertinent here.

I merely wished to confirm this: If you take the tincture you will know whether its working for you in very short order. If you still wish to bust, I would advise, just to be prudent, to lay off the tincture to do so, as I have no idea how they would react synergistically. The tincture will show definite results within twenty minutes or so.

Good luck and fire your fool of a GP.

I am still awaiting the arrival of the licorice root. Early next week, I think? I did get a skullcap mixture from the local homeopath that I've used before. I'm not entirely sure what all is in it though. On the label, he wrote-

Fever/skull/col nut

He also gave me NAG(N-Acetyl Glucosamine) for the pain from the Trex.

As of yesterday @ 10:30'ish, I've been off all meds(except for Omeprazole for acid reflux/GERD.Last one of those I took was last night @ 6:30.

I've taken 5 doses of the skullcap mixture total. 2 of which were today. When I woke up, my 2 heavy shadows were down to just a light shadow on the left side. My right has been clear all day long(so far). And I've only gotten a few pokes on the left but they were only for a few seconds.

Monday @ the GP's, my BP was 143/80, up from 132/80 on Sunday night, but it always goes up in cycle and during a hit.

I called the GP to push her on the o2 script. Talked to her nurse twice, and never got a call back before I left work@ 5. 1st time, she said the rebound HAs and coma feeling was from a script that I never got. She mentioned it at the appt, but never called it in(phenal-something or other) to the pharmacy. I told the nurse that I didn't get that, and she said a neuro would call me for an app't(same neuro that misdiagnosed a cyst on my mom's brain(which I've already had an MRI to check for)few years ago. 2nd time I talked to her she said the doc wanted me on a pred taper to bust the cycle. I told her that pred didn't work the other 3 times she tried it, and that my stomach wouldn't handle it(since it's all screwed up from the trex still, and energy drinks from yesterday). I told her that I need a way to ABORT. Soonest I could get in to see a HA spec is Apr 28th, so an abortive was imperative. I told the nurse to ask about the o2, since we discussed it at the appt.

The nurse tells me Uh, I don't know about that. She's never rx'd it since I've been here.

So I say I don't think she treats anyone else with CH.

Oh yea, we have alot of patients with that. Well, with headaches, and none of them needed oxygen.

So I reminded her that I do NOT suffer from Migraine, but CH.

Well, I'll have to go ask her about that again then. Hopefully I can get back to you sooner. I first called @ 9:30, got the first call back @ 1:00, and the second callback @4:00.

So, yeah, she's fired. Looking for new GP tomorrow, whether she comes through with o2 script or not. I don't have to deal with retards in order to get the right treatment.

So, when I called Neuro Care in Canton, OH, I ask if they treat patients with CH.

Yes, we treat a lot of HA's.

But do you treat for CH?

Uh, sure. We can treat you.

Now, I understand the people who make the app't aren't dr's, but I think they should sound a bit more encouraging than that.

Kicker is, I don't NEED a specialist, or a neuro. Just a doc that will listen and help out-not withhold from me.

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It's amazing - and very, very sad - how common your experience is. Even more, how many people put up with it. 

I think people put up with it because we feel we have to. But everyone has that line. I never pushed for the o2, because the trex worked for me, with no real adverse side effects. Until now. If you have something that works without ruining your day, you don't push for anything else.

At least, that is true for me. But as soon as something stops working, or causes me problems, it's time to push for something else. I'm tired of taking scripted meds, so I'm going the busting route. I want to be in control again.

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I want to be in control again. 

Control comes from being pro-active and advocating for yourself, versus blindly following a doctor's orders, no matter how educated or well-meaning he or she may or may not be.

Just keep that attitude and you'll be fine John!

bobb

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It is sad but true, confirmed by this week's Time magazine: Doctors are uncomfortable dealing with pain, they are not really very good at it, and chronic pain is the worst of all. We are not alone, friends: people everywhere live with an astonishing variety of heinous shit.

Anyway, John..I will issue the exceptionally rare piece of medical advice: Your blood pressure in your post above seems marginally high, and licorice root can in some people raise blood pressure, so I would advise you to arrange to monitor your blood pressure levels if you wish to use the tincture. I'm not saying don't do it, just be mindful.

And bravo; every one of us should feel in control of our own bodies and our own health care. It is a birthright.

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Doc called in the order for the o2. Gotta pay out of pocket til my deductible is met, but a small price to pay for relief.

I also got my seeds in the mail, but I caved and took a trex at work today...so back to detoxing.

Order was for 2 M tanks,regulator, and mask!  ;D

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John,

If your medical supply company is like the two I've used, you can get as much O2 as you want.  They just need the paper from the doctor saying "O2".

Glad to hear you have some relief coming!

Jeff

They brought a machine instead of tanks?  :-?

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From the CH.com oxygen page (accessed from the "Menu" button on the left hand side of this screen):

[highlight]Oxygen concentrator:  It is also called a "machine" or "Oxygen generator"  ... Whatever it is called; it does not work for most of us.

The concentrator takes normal room air, and then purifies it so that it is mostly oxygen that it generates.  You do not have to refill any tanks, or any of those "hassles" ...  Sounds great, huh?  It would be if it worked. 

The key words to what I described are "mostly oxygen".  It starts out at producing about 75 to 80% oxygen, and then after it warms up, it could get as high as 95% oxygen.  Most machines can only produce about 7 LPM of "mostly oxygen".

There are two important reasons that the concentrator is not for us.  We need 100% oxygen and we need it at a minimum of 15 LPM.

Now, I WILL admit, there are a few, who can sometimes get results from this, but not fast enough, and nowhere near as regularly as with the bottled oxygen.  If your doctor or supplier tries to tell you it is just as good, don't believe them.  Get the bottled oxygen.      

[/highlight]

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John, first of all, congratulations on persevering.  You are close.  Second, I'm really angry at myself for not urging you to be careful about getting a concentrator (a sadly typical idiot-doctor move), and to call your supplier before they came to make sure of what you were getting.  Third, I recommend that you do try the concentrator, but recognize that it probably won't work, as the others have said.  It should go up to 8 lpm, and in some rare cases that is enough to help (if the noise doesn't just make things worse).

But they gave you an actual regulator . . . or was the regulator prescription met (in their view) by the regulator in the concentrator?  If you have a separate regulator, does it go up to 15 lpm (the knob on the end)?  If you have a regulator and a mask, then you should be set to get tanks and be set up.  But of course if you don't have a proper regulator, you'll need to be sure that gets brought to you, too.  Since this whole thing has been a very, very unfunny comedy of errors, when they bring you the right stuff, please have them set it up for you and show you how to use it. 

Here's another thing I'm worried about.  There are two kinds of valves on tanks, and therefore two different kinds of regulators.  So, even though (if) you have a regulator, it might not work with the tanks they bring.  You should insist that they bring a regulator that will work with the tank(s), or at the very least that they guarantee you that the one you have will work with the tank(s).

My daughter went through all the same crazy crap you're going through, and it was very hard on her (and me).  But when she finally got the right stuff and we got it set up right (no thanks to the supplier), it was like a miracle.  So hang in there, John, hang in there.  And again, my apologies for not "being there" for you as I should have been.

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John, first of all, congratulations on persevering.  You are close.  Second, I'm really angry at myself for not urging you to be careful about getting a concentrator (a sadly typical idiot-doctor move), and to call your supplier before they came to make sure of what you were getting.  Third, I recommend that you do try the concentrator, but recognize that it probably won't work, as the others have said.  It should go up to 8 lpm, and in some rare cases that is enough to help (if the noise doesn't just make things worse).

But they gave you an actual regulator . . . or was the regulator prescription met (in their view) by the regulator in the concentrator?  If you have a separate regulator, does it go up to 15 lpm (the knob on the end)?  If you have a regulator and a mask, then you should be set to get tanks and be set up.  But of course if you don't have a proper regulator, you'll need to be sure that gets brought to you, too.  Since this whole thing has been a very, very unfunny comedy of errors, when they bring you the right stuff, please have them set it up for you and show you how to use it. 

Here's another thing I'm worried about.  There are two kinds of valves on tanks, and therefore two different kinds of regulators.  So, even though (if) you have a regulator, it might not work with the tanks they bring.  You should insist that they bring a regulator that will work with the tank(s), or at the very least that they guarantee you that the one you have will work with the tank(s).

My daughter went through all the same crazy crap you're going through, and it was very hard on her (and me).  But when she finally got the right stuff and we got it set up right (no thanks to the supplier), it was like a miracle.  So hang in there, John, hang in there.  And again, my apologies for not "being there" for you as I should have been.

GP wrote the order for 7-10LPM o2 as needed. The built in regulator goes up to 10LPM.

When the supplier called me @ work and set up the delivery, I was told I was getting 2 M tanks, Regulator and a mask(which is what the lady told me they usually do for CH patients). So you can imagine my surprise when he pulled the machine out and brought it in.

"It's more convenient."

The mask they sent is just a plain mouth/nose mask.

My heart sank a little. But I have an app't 4/4 with a neuro. Hoping he can change the order to higher flow @100% if this doesn't work.

Seeds showed up today, and licorice tincture shipped out today.   :)

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John,

Glad you're getting closer, we'll help you the rest of the way, but you need to be FIRM with both the Dr and Med supply company. 

Here's an EASY fix for you.  Call the medical supply company back.  Tell them the concentrator won't work as it's too bulky to move with you to your various work locations.  Tell them you need tanks that you can have at work and at home, and an 'E' for your car!!

oh, and I don't know what you're planning on paying, but the concentrator they delivered for me (incorrectly as well) cost around $250 per month just for the rental.  My 'E' tanks are only $8 EACH!!!

You have several motivations to get tanks instead of the concentrator 1) Almost unanimously works better and 2) cheaper, particularly if you're paying for them.

I'll PM you my number.  Feel free to call if you want.

Jeff

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Hi John,

One other thing:  You need to take control of your health and life vs. letting others control either.  I have no idea how old you are or how you present  yourself, but both, and especially the image you project, can play a major role in how others react to you.

I grew up in the sixties and seventies when most young men grew their hair long.  I remember a senior member of management in a company that I worked for, trying to make a point about presentation.  One of the younger employees (with long hair) had gotten a speeding ticket.  He had complained that the officer had pulled him over and told him that although he was in the posted speed limit, that he had been going too fast for conditions.  Our boss said that this would never happen to him.  He was trying to make the point that if this guy had a shorter haircut, that he probably never would have been ticketed.

I'm not saying that you need to do anything about your appearance.  All I'm saying is that first impressions go a long way.  If you exude the appearance of someone who knows what he wants and knows what he is talking about, then you will be taken much more seriously. 

I know you are hurting, and I know how overwhelming all of the information on this board can be, but please try to wade through it.  As I have said many times, knowledge is power.  Advocate for yourself and you will be in control of your health.

I sure hope all this makes sense, and I hope you don't think that I am talking down to you, or criticizing you in any way.  As Jeff says, "you need to be FIRM with both the doc and oxygen supplier."

I will also PM you my phone number if you want to talk.

All the best,

bobb

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John,

Glad you're getting closer, we'll help you the rest of the way, but you need to be FIRM with both the Dr and Med supply company. 

Here's an EASY fix for you.  Call the medical supply company back.  Tell them the concentrator won't work as it's too bulky to move with you to your various work locations.  Tell them you need tanks that you can have at work and at home, and an 'E' for your car!!

oh, and I don't know what you're planning on paying, but the concentrator they delivered for me (incorrectly as well) cost around $250 per month just for the rental.  My 'E' tanks are only $8 EACH!!!

You have several motivations to get tanks instead of the concentrator 1) Almost unanimously works better and 2) cheaper, particularly if you're paying for them.

I'll PM you my number.  Feel free to call if you want.

Jeff

The price I was quoted for the 2 M tanks and reg was $126/month. The guy that dropped the concentrator off said that it was the same price to lease. I have to pay out of pocket until my $1000 deductible is met. Then it's covered 100% by ins. Until I hit that deductible, they aren't paying anything.

I understand where you all are coming from, and appreciate the advice.

In the long run, I think it might still be worthwhile to see how much I can lease a tank from a weld supply co for.

What about this regulator? Up to 40 LPM...

http://www.harborfreight.com/regulator-gauge-94841.html

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Anyone feel free to correct me but in my opinion a person wouldn't necessarily need 2 M tanks for a person that's not chronic.  M tanks are significantly larger than E tanks.  Can't be moved without a dolly etc.  Particularly I wouldn't think you'd need two?  (I keep several E tanks and just rotate having them replaced as needed at $8 each)

Just a suggestion, but if you're getting hit a lot, 1 M for home and maybe three E tanks for the car / work.  (that way you can rotate the E for fresh tanks).  Just call them for a fresh M when it starts running low (instead of paying for 2).  In my opinion that would provide you with O2 anywhere you go (in the car as well) at a reduced cost of having a second M just sitting around.

Good luck,

Jeff

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What about this regulator? Up to 40 LPM...

http://www.harborfreight.com/regulator-gauge-94841.html

John, I'm once again not sure, but I don't think that's a regulator; I think it's a regulator gauge.   The item pictured next to it at that Harbor Freight site is a regulator: http://www.harborfreight.com/catalogsearch/result?category=&q=regulator

Some people have that regulator.  Keith and Ron do, I think.  My recollection is that it works fine but does not have any actual lpm settings, so you have to do it by feel.

Many folks get them (for about the same price) at eBay: http://shop.ebay.com/?_from=R40&_trksid=p5197.m570.l1311&_nkw=oxygen+regulator&_sacat=See-All-Categories,  and I think in a previous message I gave you another website that sells them (for quite a bit more, I think).

Just be sure, as I have said, that you are getting the right kind for your tank(s).

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OK. So I got hit again on Sat, so I fired up the o2 machine, hoping to abort before it ramped up, but it failed, as expected. So, on Monday, I called the med supply girl back and asked what I would have to do to get the machine swapped for tanks. She sounded pi$$ed. She couldn't believe that they brought that instead of the tanks that they were told to bring. So, the soonest they could send someone was today@ 1:30PM. I leave work to be here, and the guy shows up @ 2:00-after I called the med supplier to make sure I didn't get my days mixed up-who then called the driver and told him he was late and to hurry up.

He finally shows up and brings in 2 bases then goes back out to the van for the tanks-only to come in and apologized because the 2 tanks were EMPTY! WTF. So he tells me that he'll bring the tanks tomorrow and leave 2 small tanks for tonight. No way. I've been yanked around enough. He ended bringing the tanks tonight @ 5:30.This is the same guy that when he brought the machine, forgot to grab the fitting that hooked the line to the machine-which took almost 2 hours for him to track one down for me.

I asked him if my 1st month lease was free for all the BS I've gone through, plus leaving work for 2 hours for nothing, and he kinda just blew it off. So I'm gonna call the lady at the med supplier again and ask her about it though. But he did tell me that when I don't need the tanks after my cycle ends, to just call and they will stop billing me, but leave the tanks here-so I might not call and complain about it.

SO, I got my 2 M tanks(1 size down from welder's tank), a 15LPM regulator(max), and a plain mask(for now).

I also have my RC seeds(still detoxing though), licorice root(3 doses so far),skullcap(2 wks so far), and vit D3(2 days@4000iu/day). Had to choke down a trex Monday at work to make it through, but surprisingly, it worked without the recent side effects...so a note-do NOT take treximet for more than 2 consecutive days(if needed at all).

So far, intensity and frequency have decreased. And I started to get the 'goofy' shadows today-the ones that come and go so fast you're not even sure it hurt-that I usually get when I find a med that works. So something is helping, I just need to figure out what it is-if it's any ONE thing.

:D ;D

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John,

Glad to hear your on your way to a more pain free existence!!!!  Pat yourself on the back (I would but arms aren't long enough. :) 

Make sure you hit the O2 as soon as you feel a hit coming on.  Don't delay or that will reduce it's effectiveness. 

Did you get a 'non rebreather mask'?  If you did it'll work for now.  You want to make sure that when you breath out, your exhale doesn't go into the bag, but instead goes out the mask.  Then the bag continues filling with 100% O2 that you then breath in with the next breath.

Did you get smaller tanks for your car / work?  Those are lifesavers.  With them you likely won't have to take the Trex.

O2 for abort and detox for your bust. :)

Good luck and keep us posted!

Jeff

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John,

Yea, that's the wrong one.  It won't work for busting.  That mask won't keep the O2 in and won't keep outside air from coming in.

At a minimum you need one like pictured here (it has a bag that fills with the 100% O2 between each breath.  Best will be to get an on demand or power user mask they sell on the main cluster headache website.

Jeff

post-3211-14384707152974_thumb.jpg

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