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Introducing myself to the group (Read 2714 times)
GennaG
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Introducing myself to the group
Aug 22nd, 2011 at 11:20pm
 
Hello Clusterheads,
My name is Genevieve but since that is exceptionally acrobatic to type even for me please call me Genna for short.  I’m so new it’s not funny and believe me none of this has been funny.  I’m 40 years old, a single female, and I work from home as a publication writer and editor.  That’s probably the only reason I am able to cope right now at all.  I live in Asheville, NC and just recently moved here from New Orleans, LA.  I’m considered a disabled veteran but I don’t consider myself disabled.  While in the military I was injured and as a result I experience C-PTSD and complications for a related TBI.  I ended up at the emergency room night before last for the first time with one of these headaches.  While I don’t think they have officially diagnosed me yet, they started saying “cluster headache” when they were talking to each other, so I goggled it the next day and HELLO that’s me.  I’ve had other headaches before but they were nothing like this.  I think it has been building up.  They’ve been gradually increasing in frequency and intensity.  But the clock-like timing was crystal clear from the start as was the unilateral pain.  Don’t know if that is typical, but it’s reached a point where I can’t deal with it on my own. Up until now I have been trying to cope without getting medical attention.  It seemed weak to me somehow to go to the doctor and say “See, I’ve been having these really bad headaches.” Headache doesn’t seem like a big enough word and it comes on so strong and so hard and then leaves just as suddenly after a couple of hours.  That was the other reason for my reluctance to ask for help.  Once it was over, it was almost like it never happened until it happened again.  Most of my healthcare is colored by medical practioners’ idea that I’m not exactly mentally stable and I didn’t want to get told I was having some kind of psychosomatic problem again.  In the beginning I was having one a day.  They started in May and I’d just gone through a stressful relocation moving across a few states to be near family.  I thought it probably was stress.  I thought maybe it was elevation sickness.  But that doesn’t usually last for 3 months and no one else seemed to get what was happening.  I don’t pace or kick or scream but I want to.  I rock back and forth like a “headcase” as my brother described it.  Sometimes I pull my hair or hit my head or smash my left eye. All of that looks “pretty crazy” and I have been called crazy enough in my life to try and avoid being called that again.  Being alone doesn’t help but the worried looks of family don’t either so I prefer to be alone.  In May, I was only having one a day but it was every day about 2pm.  My mother offered up maternal advice saying you probably just need a power nap.  But sleeping isn’t possible with it unless I practically overdose on sleep aids.  I took as many as four 25 mg benedryls and was starting to scare myself afraid if I did go to sleep I wouldn’t wake up.  And besides, I still did not actually sleep I was just too looped to care so much that it still hurts and I stop all the rocking and agitation.  I cry out of my left eye but that’s the side that hurts and sometimes it gets bloodshot.  Nothing over the counter works and at some point the intensity of the headaches reached a level where I didn’t even bother with medication.  Hot showers work in a limited way, but I have to get the water so hot it scalds my body for it to effect the pain.  I’ve also used a heating pad on high on my head but I was told I could cook my brain if I left it on every day like that.  Don’t know if that’s true but I stopped it.  Perhaps I would have sought health care advice sooner but doctors make me a little nuts.  I’m a veteran with access to the worst HMO in the world—the Veterans Administration for medical care.  Normally, I find avoiding that place highly preferable and healthier than being seen there.  If hospitals are a good place to get sick, the VA is a good place to get locked up or dead and especially when you feel like self-decapitation is an option to end your headache.  Never ever tell a doctor you could hurt yourself, just kidding.  Actually you have to but this was my main reason for not telling them sooner, I was worried about them locking me down because they do that.  Anyway, I ended up telling them whether I wanted to or not two nights ago when I arrived by ambulance banging my head.  And for once it looks like they got something right.  I was shocked when they started the oxygen because I wasn’t having any trouble breathing and I was unfamiliar with procedure so I thought “Great! They think I’m having some kind of panic attack… I’m definitely going to be transferred to the psych ward.” In defense of the VA, panic disorder is on my medical chart there with severe PTSD, but I was very sure this wasn’t related and not so sure I could articulate in the shape I was in what was happening to me.  But within minutes of the oxygen mask, my pain reduced to where I could communicate what was going on.  They gave me a shot and within seconds I was perfectly fine.  A little looped but fine.  Now I’ve got to talk to a PCP about this in this week and get a preventative treatment.  My general policy is one of alternative medicine over prescriptions but it’s funny how when you are in this kind of pain principles exit the equation.  You just want it to stop.  The last time I felt like that was when facing labor pains.  Suddenly natural childbirth sounded like a bad idea just gimme the epidural NOW.  I hope the doctor will be willing to supply me with an oxygen tank over prescriptions but I don’t know how firmly I’ll stick to that ethical stand point when facing the pain again.  I’d rather not be on regular medication.  None of that ever worked for the PTSD and frankly I don’t like my body to be a home for anything heavier than my nicotine habit.  Meanwhile I am having 3 a day now-- 2pm, 9:30pm, and about 2am.  Pain meds alone aren’t nearly as effective as the oxygen combo and they only sent me home with 15 of them.  I’ll be out before end of the week at this rate.  And I don’t want this stuff in my system.  My nephews were discussing hatching dragons the other day and I thought THAT is what it feels like… like a dragon egg is hatching behind my left eye ball.  There’s definitely something akin to that alien busting out of the guy’s chest in Alien going on just in a different part of my anatomy.  The only productive time of the day for me is morning but I am missing most of it because it’s the only time I can sleep.  Any holistic or alternative medicine ideas would be greatly appreciated.  I’ve switched to sugar free chocolate substitutes, stopped drinking any alcohol at all, tried a dozen herbal remedies and I’m drinking water by the gallon.  Quitting cigs ain’t gonna happen right now.  It’s futile although I’m sure it couldn’t hurt.  I’m  just not going  do it regardless of my motivation.  If I’ve learned anything about myself it is that there is no good time to quit smoking and I’m lying to myself when I say I’ll do it.  In fact, I’ve been smoking nearly twice as much in response to the mere idea of it.  Thank you sincerely, I gotta go prepare for my next headache.  It’ll be here before you know it.  GG
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bejeeber
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Re: Introducing myself to the group
Reply #1 - Aug 23rd, 2011 at 2:05am
 
Hi Genna,

Well the symptoms you describe certainly sound extremely familiar.

I think you'll be happy to learn that not only are there a variety of very effective non toxic treatments, but they can actually be more  effective than any of the drugs prescribed for CH. Really.

Of course you've tried one already - O2. It's important to get ya some at home ASAP, whether through the doctor with prescription or failing that, from a welding supply place. The oxygen info link to the left is  where the good instructions are.

There's a specific  CH vitamin D3 regimen that's making quite a splash here lately with some who've tried it reporting impressive results. Here's the discussion topic for it: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

The clusterbusters approach can be both a powerful CH preventative and a treatment for PTSD. It's not necessarily for everyone -it's important to read the warnings - but there have definitely been an increasing number of CH'ers adopting it with success and ditching the drugs. Check out this video talk on the subject by one of our fellow CH'ers: Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register

You've hit the mother lode of CH info here and there's more non non toxic stuff like melatonin, kudzu, etc. to look into.

Glad ya came here - I think things are looking up for you now.  Smiley

- Jeebs

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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
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Bob Johnson
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Re: Introducing myself to the group
Reply #2 - Aug 23rd, 2011 at 6:54am
 
Please!, Editor, use your skills and get some paragraphs into the game!
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deltadarlin
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Re: Introducing myself to the group
Reply #3 - Aug 23rd, 2011 at 8:09am
 
Walls of text are hard to read.

Genna,
You might want to talk to catlind on here.  Not only does she live in your area, she's used to dealing with the VA (her husband is active duty).

carolyn
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GennaG
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Re: Introducing myself to the group
Reply #4 - Aug 23rd, 2011 at 10:07am
 
[size=16][/size]  Jeebs, Thank you so much for the information on D3.  I have some and have been taking much smaller doses than you suggested for another condition I have.  I'll up the dose immediately to your recommendation.  I also have melatonin and i don't see why making that part of my daily routine could hurt either.    Smiley

Dear Critic, LOL Can't remember your name, but I'll do my best to meet your high aesthetic standards from now on.  I copy/pasted with paragraphs intact and in larger print but I guess neither made the transfer.  Word of warning, expect typos and more grammatical errors in my post in the future... I'm not at work when I'm posting. And perfection doesn't happen without work.   Shocked

And last but not least, I will look up the person whom you suggested.  Always nice to have local support.  Wink GG
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Re: Introducing myself to the group
Reply #5 - Aug 23rd, 2011 at 11:23am
 
A real diagnosis is a necessity.

      Potter
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Re: Introducing myself to the group
Reply #6 - Aug 23rd, 2011 at 12:20pm
 
Here's the risk you run when your post comes out as a wall of text that drives the eyes batty:

People won't read it.

Your choice.

These aren't just aesthetic suggestions. We're trying to increase your chances of others taking the time to help you.
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GennaG
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Re: Introducing myself to the group
Reply #7 - Aug 23rd, 2011 at 12:28pm
 
GrinWow, You're really crabby... having a headache?  I get that... but you might wanna give newbies a chance to acclimate to the posting process before you crab all over them.  It's not as if this message board is a standard word processor.  Meanwhile, you're just pissing me off so don't bother replying cause I'm ignoring your sour messages from now on.  Thanks and have a great day! 
Grin GG
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Re: Introducing myself to the group
Reply #8 - Aug 23rd, 2011 at 1:00pm
 
Check the drawer for Big Girl Panties.

             Potter
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Re: Introducing myself to the group
Reply #9 - Aug 23rd, 2011 at 1:40pm
 
Hi Genevieve,

What a beautiful name! 

  Everyone who responds to you does so with the hope of helping you.  They are just asking you to make your posts easier to read.   We are all in the same boat here and all want to help you learn to manage your pain and live the best life possible.

There is so much to learn here.  I hope you'll take the time to read all that this site has to offer.

edited due to poor grammar
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« Last Edit: Aug 23rd, 2011 at 1:47pm by Jeannie »  

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Racer1_NC
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Re: Introducing myself to the group
Reply #10 - Aug 23rd, 2011 at 2:05pm
 
Jeannie wrote on Aug 23rd, 2011 at 1:40pm:
Hi Genevieve,

What a beautiful name! 

  Everyone who responds to you does so with the hope of helping you.  They are just asking you to make your posts easier to read.   We are all in the same boat here and all want to help you learn to manage your pain and live the best life possible.

There is so much to learn here.  I hope you'll take the time to read all that this site has to offer.


Just repeating what Jeannie has said...... Welcome.
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Re: Introducing myself to the group
Reply #11 - Aug 23rd, 2011 at 2:56pm
 
Welcome to the board G. It sounds like the VA was right on top of it this time. Go figure. The shot probably was an Imitrex injection. They abort them in about 5-10 minutes.

02 is what I would demand from the doc when you go back. Make sure the regulator is at LEAST 15 lpm (25 lpm is even better) with a non-rebreathing mask.

02 will knock mine in 5-10 minutes as well and is completely safe.

You might want to check the clusterbusters site as well if you truly are considering alternative ways.

Again.....welcome and read, read, read. Smiley
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GennaG
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Re: Introducing myself to the group
Reply #12 - Aug 23rd, 2011 at 3:05pm
 
I got an appt tomorrow 1pm.  Most of what you guys said is at least minimizing this latest headache but it's not gone. Just not hair ripping out sized.  My brother said glass blowers also use oxygen and there is a lot of that in this area if I can't get from VA  GG
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Re: Introducing myself to the group
Reply #13 - Aug 23rd, 2011 at 3:24pm
 
GennaG wrote on Aug 23rd, 2011 at 3:05pm:
My brother said glass blowers also use oxygen and there is a lot of that in this area if I can't get from VA  GG


Well that's good to know you can walk out of the VA with a plan B in mind if O2 is a no go with them.

Meantime you'll probably want to be looking into the non-rebreather mask/high flow regulator procurement so you can be ready to rock when you do get the O2.  Smiley


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CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
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Re: Introducing myself to the group
Reply #14 - Aug 23rd, 2011 at 3:39pm
 
For sure a diagnosis is  really important before any treatment.

              Potter
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GennaG
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Re: Introducing myself to the group
Reply #15 - Aug 23rd, 2011 at 3:40pm
 
Wow, I searched on Amazon and the prices range from roughly $5 to $80.  Blowing my mind a little.  Any particular specs? because they kinda all look the same?  I wonder why they don't include one.  Okay, more to digest... I'm only reeling a little.  Still not operating at top efficiency because when I take their hydrocodone I may not feel as bad but I feel foggy for a longer time. GG
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Re: Introducing myself to the group
Reply #16 - Aug 23rd, 2011 at 3:43pm
 
GennaG wrote on Aug 23rd, 2011 at 3:40pm:
Wow, I searched on Amazon and the prices range from roughly $5 to $80.  Blowing my mind a little.  Any particular specs? because they kinda all look the same?  I wonder why they don't include one.  Okay, more to digest... I'm only reeling a little.  Still not operating at top efficiency because when I take their hydrocodone I may not feel as bad but I feel foggy for a longer time. GG


Not usually effective against ch.  nor recommended.

             Potter

            
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GennaG
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Re: Introducing myself to the group
Reply #17 - Aug 23rd, 2011 at 4:22pm
 
Yup not my preference but its what the ER Doc gave me.  Oh and the shot was Dilaudid/toradol IV mix. Honestly the O2 was the best remedy. 
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Re: Introducing myself to the group
Reply #18 - Aug 23rd, 2011 at 9:32pm
 
Not crabby. Just practical. As an editor, you should know that big walls of text without breaks will subconsciously force a person to move on to the next thing.

Like I said - your choice.

Here's how you do it - hit the "Return" key twice between paragraphs:

Quote:
Hello Clusterheads,

My name is Genevieve but since that is exceptionally acrobatic to type even for me please call me Genna for short.  I’m so new it’s not funny and believe me none of this has been funny.

I’m 40 years old, a single female, and I work from home as a publication writer and editor.  That’s probably the only reason I am able to cope right now at all.  I live in Asheville, NC and just recently moved here from New Orleans, LA.  I’m considered a disabled veteran but I don’t consider myself disabled.  While in the military I was injured and as a result I experience C-PTSD and complications for a related TBI.  I ended up at the emergency room night before last for the first time with one of these headaches.  While I don’t think they have officially diagnosed me yet, they started saying “cluster headache” when they were talking to each other, so I goggled it the next day and HELLO that’s me.

I’ve had other headaches before but they were nothing like this.  I think it has been building up.  They’ve been gradually increasing in frequency and intensity.  But the clock-like timing was crystal clear from the start as was the unilateral pain.  Don’t know if that is typical, but it’s reached a point where I can’t deal with it on my own.

Up until now I have been trying to cope without getting medical attention.  It seemed weak to me somehow to go to the doctor and say “See, I’ve been having these really bad headaches.” Headache doesn’t seem like a big enough word and it comes on so strong and so hard and then leaves just as suddenly after a couple of hours.  That was the other reason for my reluctance to ask for help.  Once it was over, it was almost like it never happened until it happened again.

Most of my healthcare is colored by medical practioners’ idea that I’m not exactly mentally stable and I didn’t want to get told I was having some kind of psychosomatic problem again.  In the beginning I was having one a day.  They started in May and I’d just gone through a stressful relocation moving across a few states to be near family.  I thought it probably was stress.  I thought maybe it was elevation sickness.  But that doesn’t usually last for 3 months and no one else seemed to get what was happening.

I don’t pace or kick or scream but I want to.  I rock back and forth like a “headcase” as my brother described it.  Sometimes I pull my hair or hit my head or smash my left eye. All of that looks “pretty crazy” and I have been called crazy enough in my life to try and avoid being called that again.  Being alone doesn’t help but the worried looks of family don’t either so I prefer to be alone.

In May, I was only having one a day but it was every day about 2pm.  My mother offered up maternal advice saying you probably just need a power nap.  But sleeping isn’t possible with it unless I practically overdose on sleep aids.  I took as many as four 25 mg benedryls and was starting to scare myself afraid if I did go to sleep I wouldn’t wake up.  And besides, I still did not actually sleep I was just too looped to care so much that it still hurts and I stop all the rocking and agitation.

I cry out of my left eye but that’s the side that hurts and sometimes it gets bloodshot.  Nothing over the counter works and at some point the intensity of the headaches reached a level where I didn’t even bother with medication.  Hot showers work in a limited way, but I have to get the water so hot it scalds my body for it to effect the pain.  I’ve also used a heating pad on high on my head but I was told I could cook my brain if I left it on every day like that.  Don’t know if that’s true but I stopped it.

Perhaps I would have sought health care advice sooner but doctors make me a little nuts.  I’m a veteran with access to the worst HMO in the world—the Veterans Administration for medical care.  Normally, I find avoiding that place highly preferable and healthier than being seen there.  If hospitals are a good place to get sick, the VA is a good place to get locked up or dead and especially when you feel like self-decapitation is an option to end your headache.

Never ever tell a doctor you could hurt yourself, just kidding.  Actually you have to but this was my main reason for not telling them sooner, I was worried about them locking me down because they do that.  Anyway, I ended up telling them whether I wanted to or not two nights ago when I arrived by ambulance banging my head.  And for once it looks like they got something right.  I was shocked when they started the oxygen because I wasn’t having any trouble breathing and I was unfamiliar with procedure so I thought “Great! They think I’m having some kind of panic attack… I’m definitely going to be transferred to the psych ward.”

In defense of the VA, panic disorder is on my medical chart there with severe PTSD, but I was very sure this wasn’t related and not so sure I could articulate in the shape I was in what was happening to me.  But within minutes of the oxygen mask, my pain reduced to where I could communicate what was going on.  They gave me a shot and within seconds I was perfectly fine.  A little looped but fine.

Now I’ve got to talk to a PCP about this in this week and get a preventative treatment.  My general policy is one of alternative medicine over prescriptions but it’s funny how when you are in this kind of pain principles exit the equation.  You just want it to stop.  The last time I felt like that was when facing labor pains.  Suddenly natural childbirth sounded like a bad idea just gimme the epidural NOW.

I hope the doctor will be willing to supply me with an oxygen tank over prescriptions but I don’t know how firmly I’ll stick to that ethical stand point when facing the pain again.  I’d rather not be on regular medication.  None of that ever worked for the PTSD and frankly I don’t like my body to be a home for anything heavier than my nicotine habit.

Meanwhile I am having 3 a day now-- 2pm, 9:30pm, and about 2am.  Pain meds alone aren’t nearly as effective as the oxygen combo and they only sent me home with 15 of them.  I’ll be out before end of the week at this rate.  And I don’t want this stuff in my system.

My nephews were discussing hatching dragons the other day and I thought THAT is what it feels like… like a dragon egg is hatching behind my left eye ball.  There’s definitely something akin to that alien busting out of the guy’s chest in Alien going on just in a different part of my anatomy.

The only productive time of the day for me is morning but I am missing most of it because it’s the only time I can sleep.  Any holistic or alternative medicine ideas would be greatly appreciated.  I’ve switched to sugar free chocolate substitutes, stopped drinking any alcohol at all, tried a dozen herbal remedies and I’m drinking water by the gallon.  Quitting cigs ain’t gonna happen right now.  It’s futile although I’m sure it couldn’t hurt.  I’m  just not going  do it regardless of my motivation.  If I’ve learned anything about myself it is that there is no good time to quit smoking and I’m lying to myself when I say I’ll do it.  In fact, I’ve been smoking nearly twice as much in response to the mere idea of it.

Thank you sincerely, I gotta go prepare for my next headache.  It’ll be here before you know it.

GG

Now if you'd rather I didn't try to help, just say the word and you'll never hear from me again.
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Re: Introducing myself to the group
Reply #19 - Aug 23rd, 2011 at 11:03pm
 
Genna,

Medical supply places typically only have regulators that go up 10 LPM or so max.

Some CH'ers can abort attacks at that liter flow, so it can be worth a try, but 25 LPM is more in the high flow realm and it's what I would personally consider to be a minimum liter flow.

I've heard that 25 LPM regulators can be had on Ebay for around $25, but I think you may need to be using a regulator for an M size tank in order for the regulator to work for both a medical or a welding tank...?

Here's a link to info on that subject - maybe you can make more sense of it than I did in my cursory scanning:

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M tanks are kinda big (around 44 pounds I think), but it's good to have a big tank (or 3!) when you're using high flow O2. I have the medical supply place bring 3 M tanks at a time when I'm in high cycle  so they don't have to keep coming back with refills  too often.
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« Last Edit: Aug 24th, 2011 at 12:59am by bejeeber »  

CH according to Bejeeber:

Strictly relying on doctors for CH treatment is often a prescription that will keep you in a whole lot of PAIN. Doctors are WAY behind in many respects, and they are usually completely unaware of the benefits of high flow 100% O2.

There are lots of effective treatments documented at this site. Take matters into your own hands, learn as much as you can here and at clusterbusters.com, put it into practice, then tell this CH beast Jeebs said hello right before you bash him so hard with a swift uppercut knockout punch that his stupid horns go flinging right off.
bejeeber bejeeber Enter your address line 1 here  
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wimsey1
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Re: Introducing myself to the group
Reply #20 - Aug 24th, 2011 at 7:26am
 
Greetings, GG. I just noticed in your post a comment about not wanting to introduce more or heavier meds into your body other than nicotine. I get that as both a smoker and a chronic, but please don't confuse a good preventative (like verapamil, lithium, olanzapine, etc) with a med like oxycodone. The prevents aren't narcotics and while we do need them in often higher than usual doses, they really can work to keep a cycle from grabbing on. A prednison taper can often break a cycle long enough for a prevent to build up.

Yes, these are meds you might need to be on for awhile, although if you are episodic you might be able to go off while out of cycle. But considering the pain relief? It's worth it. God bless. lance
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