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new and hoping for info (Read 4716 times)
mattyc
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new and hoping for info
Oct 22nd, 2008 at 6:49pm
 
Hi. my name is matt and i am 33. I have suffered with episodic cluster headaches since i was 19. As u all know they are down right debilitating. I have just found this sight and it is so helpful to me to see that there are others like me. Most of what i have read pertains to alot of what i experience. Lately i started a bad cycle about 5 weeks ago after being cluster free for about 4 years. Some things I don't exactly understand what theymean, What are "shadows". Is that the flirting the headache does before it attacks. I have other questions that most docs are to uneducated onthe subject to answer but i am new hear and want to meet others to learn more. This website bar none has helped me get info i need and understanding. Thank u for yalls time and i look foward to hearing from u.
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Re: new and hoping for info
Reply #1 - Oct 22nd, 2008 at 7:16pm
 
Welcome Matt,
     Sorry to hear you are back with the Beast.  I was pain free for six years.
     You are correct regarding shadows.  Kind of a low level CH.  Mine are more like pressure than pain.
     What meds are you taking?  I use Prednisone and Verapamil, which seems to work fairly well for me.
      Oxygen seems to be the main abortive for most here.
      Read on, there is tons of info here.
                               Good Luck To Ya
                                       JPC
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DennisM1045
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Re: new and hoping for info
Reply #2 - Oct 22nd, 2008 at 7:20pm
 
Hi Matt!  Welcome to your new home...

It took me 12 years to get a diagnosis and about a week to find this site.  I'm always amazed watching people come in here lost, afraid and despirate for answers.  It doesn't take long before they find something to help in a real way.  Sometimes its enough to know you aren't alone.

Hey Matt, you'll never be alone with this again  Cool

-Dennis-
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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
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Re: new and hoping for info
Reply #3 - Oct 22nd, 2008 at 7:24pm
 
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mattyc
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Re: new and hoping for info
Reply #4 - Oct 22nd, 2008 at 7:45pm
 
i have been on prednisone for 8 days and it helps by cutting attacks down to about 1 every other day but i am suppose to stop taking it sat. Before my attacks were daily and sometimes 2 to 4 a day. Imitrex helps my attacks but my insurance company only allows a certain amount. They keep sending me in circles of red tape. Replax does not work. What works best honestly is work and excersise. I own a carpentry bus and as longs a i have a task is some how wont let them break through, so i have been trying to work alot. I also play soccer in an adult league and while playing i have no problems and after the beast seems to sleep a little. Triggers wise though if i feel i am getting a headache and i smoke a cigarette it speeds it up and makes it more painful. other than that it seems to be a chemical natural thing. I haven't drank alcohol, eaten the bad foods, have got enough sleep, and drank a lot of water.
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Re: new and hoping for info
Reply #5 - Oct 22nd, 2008 at 8:02pm
 
      I will assume you have a cutting torch setup.  That big green bottle of goodness is just waitin to be used and abused.

                     Potter
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DennisM1045
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Re: new and hoping for info
Reply #6 - Oct 22nd, 2008 at 8:11pm
 
Hi again Matt!

A pred taper is usually started at the same time as some type of preventative medication.  The idea is the pred dampens or (hopefully) kills the cycle while the prevent builds up in your system.  My prevent is Verapamil which can take a week or so to become effective.

If the pred doesn't kill your cycle, Saturday night might be 'interesting'.  The beast hates pred tapers and can come out fighting after the lock comes off his chemical cage.

If that happens, have a couple of cans of Rock Star, Monster, Red Bull, ... whatever is on sale handy.  The trick is to find something with 1000mg of Taurine in it.  That can kick the beast to the curb if you down quick it at the first signs of an attack.  Also, coffee is your friend  Wink

There is also an over-the-counter herbal remedy that some have had success with.  Look at the Killowatt3 thread on the Medications page.

Imitrex is expensive and tough on the vascular system.  About 70% of us have a lot of luck with 100% Oxygen at high flow rates.  It aborts a cluster attack in 10 minutes for me.  I'd encourage you to go the medications page and check out the two O2 threads that are stickied at the top.  They should get you up to speed on O2.

By working with your Neuro you should be able to get an override in place with the Insurance company.  I went the route and get up to 12 shots a month.  However with Oxygen therapy I only used 3 shots total in my last cycle which was 12 weeks long.

Read through the info thebbz gave you up above.  Call your Neuro's office tomorrow and get back in to see him ASAP.  You don't want to get caught naked Saturday night.

Good luck...

-Dennis-
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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
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Re: new and hoping for info
Reply #7 - Oct 22nd, 2008 at 10:54pm
 
When you see your neurologist ask for a prescription for oxygen therapy.  Make sure the Rx reads like the following:

"Oxygen therapy with a non-rebreather mask at a flow rate of 12 to 15 liters/minute AS NEEDED for cluster headache attacks. - Unlimited Refills."

It's very important your Rx read this way for several reasons...  

If it fails to state "Oxygen therapy with a non-rebreather mask" you'll be given a nose cannula instead of an oxygen mask.  The insurance company and the home care oxygen delivery folks will assume you have one of the COPD disorder and give you a nose cannula worth $1 instead of a non-rebreather mask costing $1.50.  The nose cannula is useless when using oxygen therapy as a cluster headache abortive.  They're designed for a much lower flow rate.

Any oxygen flow rate less than a 15 liters/minute will not be very effective as a cluster headache abortive.  In reality, most CH'ers who use oxygen therapy effectively, use an oxygen flow rate of 25 liters/minute or much higher.  Once you get the Rx for oxygen therapy, let us know.

If the Rx fails to state "AS NEEDED for cluster headache attacks" your insurance company will jack you and your doctor around and require a 24 hr oxygen saturation test be done on you because they will automatically assume the oxygen will be used as a supplement for any one of the COPD disorders. This process will take weeks, cost you the time and expense of another doctor's appointment, and, unless you do have a COPD disorder, your oxygen saturation levels will be normal and that will give your insurance company all the information it needs NOT to pay for your oxygen therapy.  You need oxygen therapy as an abortive NOT a supplement.  

Remember, too many medical insurance companies are no better than the jack-ass socialists in Congress.  The insurance company has your money and feels entitled to keep it.  Their CEOs actually get a bonus when their agents are able to dupe policy holders out of legitimate coverage for expenses like oxygen therapy.   That way they can keep your money and spread the wealth around amongst themselves.  Sound familiar?

Take care,

V/R, Batch
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Re: new and hoping for info
Reply #8 - Oct 23rd, 2008 at 6:53am
 
Quote:
Any oxygen flow rate less than a 15 liters/minute will not be very effective as a cluster headache abortive.  In reality, most CH'ers who use oxygen therapy effectively, use an oxygen flow rate of 25 liters/minute or much higher.  Once you get the Rx for oxygen therapy, let us know.

I am really curious how you guys do this?  I'm 6'4", 230 lbs. and in annual physicals am told that I have the lungs of someone 15 years younger than my age.  I use O2 at 7-8 lpm to abort my attacks.  I take slow, deep breaths and the rebreather bag never empties.  Are you guys hyperventillating on this stuff?  I can't imagine trying to keep up with 25 lpm!
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DennisM1045
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Re: new and hoping for info
Reply #9 - Oct 23rd, 2008 at 7:49am
 
Bob P wrote on Oct 23rd, 2008 at 6:53am:
Quote:
Any oxygen flow rate less than a 15 liters/minute will not be very effective as a cluster headache abortive.  In reality, most CH'ers who use oxygen therapy effectively, use an oxygen flow rate of 25 liters/minute or much higher.  Once you get the Rx for oxygen therapy, let us know.

I am really curious how you guys do this?  I'm 6'4", 230 lbs. and in annual physicals am told that I have the lungs of someone 15 years younger than my age.  I use O2 at 7-8 lpm to abort my attacks.  I take slow, deep breaths and the rebreather bag never empties.  Are you guys hyperventillating on this stuff?  I can't imagine trying to keep up with 25 lpm!

Precisely!  Hyperventillating allows me to abort quicker.  I only use 25lpm until the pain deminishes.  Then I back off to 15lpm.  I also use a 3 liter bag and can almost empty it in one inhale.  When I'm in that kind of pain my respiration rate is very high anyway.

-Dennis-

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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
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Re: new and hoping for info
Reply #10 - Oct 23rd, 2008 at 8:19am
 
I use a Clustermask and hyperventilate and it aborts much quicker than it did when I was on 8 liters or even 15. Where it used to take 10-15 minutes - it now takes 5-6.

From what Pete tells me - it's like exercising - builds up muscle tone (or whatever it does to your veins and arteries -- I'll let him explain that one). My headaches are fewer and farther between since I started doing this. May just be in a "low" cycle, but whatever it is I'll take it.

Matt, you'll find a lot of us here swear by O2.

Might get some melatonin (OTC) for those night hits. Sometimes it takes a while to get in your system, but it helps get you thru the REM sleep (when the CH hits).

Hoping you get some PF time...

Hugs BD
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Re: new and hoping for info
Reply #11 - Oct 23rd, 2008 at 5:24pm
 
You guys all rock! I have learned more hear on this website than any other doc (Neuro or reg) has ever been able to do. another question I had was about cafiene. Some say use it some say don't. Normally other than morning coffee i generally don't drink soda or energy drinks b/c of sugar. helps me stay healthy. one post said drink slam energy drinks to abort which make sense, but what about when u crash from that much caffiene. Will it make the headaches return? excedrine tension headache helps control the shadows while at work and it has caffiene in it. But eventually the beast will break through if it wants. Also thank you for the links. I crave information since most doctors seem to have no idea what they are talking about.
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Re: new and hoping for info
Reply #12 - Oct 23rd, 2008 at 5:37pm
 
mattyc wrote on Oct 23rd, 2008 at 5:24pm:
You guys all rock! I have learned more hear on this website than any other doc (Neuro or reg) has ever been able to do. another question I had was about cafiene. Some say use it some say don't. Normally other than morning coffee i generally don't drink soda or energy drinks b/c of sugar. helps me stay healthy. one post said drink slam energy drinks to abort which make sense, but what about when u crash from that much caffiene. Will it make the headaches return? excedrine tension headache helps control the shadows while at work and it has caffiene in it. But eventually the beast will break through if it wants. Also thank you for the links. I crave information since most doctors seem to have no idea what they are talking about.


       Don't get too smart just get oxygen.

             Potter
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Re: new and hoping for info
Reply #13 - Oct 23rd, 2008 at 5:56pm
 


   When we're having a CH our arteries expand drastically.  What we need is a vasoconstrictor.  Caffeine is a vaso constrictor.
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Re: new and hoping for info
Reply #14 - Oct 23rd, 2008 at 6:00pm
 
Bob, I never tried using the flow regulators, I've always used a demand regulator. Sometimes I wanna breathe fast, sometimes I like doing the slow inhale, long held, slow release breathing. The demand lets me do that without wasting any 02. One more thing where it's a lot of trial and error to see what reacts best with your bod!

Matty, what you refer to as staying busy to avoid hits is very common. For many on the board, their mantra while on cycle is "never relax"! As soon as they relax from stress, WAM they get hit. To show you how different the beast is, I'm just the opposite. Long periods of sustained stress are a trigger for me when I'm on cycle. Keep reading, Like Bxx said, knowledge is power and this site is loaded with it.

Guiseppi

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Re: new and hoping for info
Reply #15 - Oct 23rd, 2008 at 6:17pm
 
Guiseppi wrote on Oct 23rd, 2008 at 6:00pm:
Bob, I never tried using the flow regulators, I've always used a demand regulator. Sometimes I wanna breathe fast, sometimes I like doing the slow inhale, long held, slow release breathing. The demand lets me do that without wasting any 02. One more thing where it's a lot of trial and error to see what reacts best with your bod!

Matty, what you refer to as staying busy to avoid hits is very common. For many on the board, their mantra while on cycle is "never relax"! As soon as they relax from stress, WAM they get hit. To show you how different the beast is, I'm just the opposite. Long periods of sustained stress are a trigger for me when I'm on cycle. Keep reading, Like Bxx said, knowledge is power and this site is loaded with it.

Guiseppi



Guiseppi and I are like brothers who've never met....  We'll have to fix that some day.

I too use a demand valve.  It works rather like a single hose scuba regulator.  When you inhale, the oxygen flows to keep up with the "demand".  When you exhale or hold your breath, no oxygen flows.  Get one if you can (but be aware that they're expensive and insurance companies may balk at it).

Best of luck,

Ray
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DennisM1045
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Re: new and hoping for info
Reply #16 - Oct 23rd, 2008 at 8:27pm
 
mattyc wrote on Oct 23rd, 2008 at 5:24pm:
another question I had was about cafiene. Some say use it some say don't. Normally other than morning coffee i generally don't drink soda or energy drinks b/c of sugar. helps me stay healthy. one post said drink slam energy drinks to abort which make sense, but what about when u crash from that much caffiene. Will it make the headaches return?

Caffiene is a vasodialator and helps with attacks.  Your own experience with Excedrine shows that.  However the real action of triptans and Oxygen may be more central to the Hypathalamus and trigemenal nerve that we've previously thought.  Caffeine doesn't reach that far.  So it only buys you so much help. 

On crashing: After you use the energy drinks for a while you don't feel the effects as much.
Quote:
excedrine tension headache helps control the shadows while at work and it has caffiene in it. But eventually the beast will break through if it wants.

Beware Excedrine!!! It'll eat your stomach lining if you use too much of it.  Better to stick with coffee and/or energy drinks.  Same Caffiene with less trouble for your innards  Grin

-Dennis-
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Where there is life, there is hope.
Where there is Oxygen, you must use proper caution.
So be safe, don't smoke while using O2. Kill the pain and not yourself.
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Re: new and hoping for info
Reply #17 - Oct 23rd, 2008 at 9:06pm
 
My buddy Dennis misspoke:

Quote:
Caffiene is a vasodialator and helps with attacks.


He ment vasoconstrictor.

Ray
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Re: new and hoping for info
Reply #18 - Oct 23rd, 2008 at 9:30pm
 
[/quote]On crashing: After you use the energy drinks for a while you don't feel the effects as much.
-Dennis-
[/quote]

Good stuff from Dennis in the post above...and I can attest to the quote above. I used to use triple stength coffee and moved to the energy drinks. No caffeine buzz anymore...I frequently drink 8 oz of "Wired" (172 mg caffeine, 1500 mg taurine) right before bed and no problem sleeping (provided the beast slumbers too).

Word of caution...I have noticed that caffeine at the "wrong" time(that is, in between normal hit times) will actually cause hits. In other words, I only use as an abort or a carefully calculated prevent.

Best,

Jon
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Re: new and hoping for info
Reply #19 - Oct 23rd, 2008 at 10:10pm
 
Yep, caffeine can be a double edged sword, one can get too much of a good thing and actually trigger and get rebounds from it. I set my limit at 2000mg a day. Just 02 at night.
all the best
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Re: new and hoping for info
Reply #20 - Oct 23rd, 2008 at 10:20pm
 
Bob,

Good question.  The short answer is we can breathe at oxygen flow rates of 25 liters/minute and higher because it’s easy.  If you jogged around the block, I would venture your 15-year younger lungs would have no problem breathing at these rates.  The full answer why flow rates like this are needed is a bit longer so please let me start by saying there are no absolutes when it comes to cluster headaches...  We're all wired differently and some therapies tend to be more or less effective on an individual basis.  

This same rule applies to oxygen therapy, but only up to a point. Respiratory physiology is a homeostatic process where the body automatically regulates respiration and pulse rates as the primary mechanism to maintain an equilibrium or balance of oxygen and carbon dioxide at normal levels.

Having said that, there are also physical and medical conditions or factors that tend to bias that equilibrium in one direction or another, and in the process, inhibit or enhance the abortive power of oxygen therapy accordingly.  For example, a low cardiac output, metabolic acidosis, or a COPD disorder like asthma are examples of medical conditions that tend to inhibit the beneficial effects of oxygen therapy and make it less effective.

There should be no question that an oxygen flow rate of 7 to 9 liters/minute is more than sufficient to oxygenate blood hemoglobin to 100% in the arterial bloodstream at a normal respiration rate.  Having said that, the physiology of respiration is based on the exchange of two fundamental gasses within the lung's alveoli, oxygen and carbon dioxide.  While breathing 100% oxygen at 7 to 9 liters/minute represents a 5-fold increase in the oxygen concentration inhaled, it’s the respiration rate and tidal volume of inhaled air that regulates CO2 levels.  

If you're using a properly functioning non-rebreather mask that prevents any room air from being inhaled, your respiration rate will be limited by the regulator's flow rate.  Depending on the level of CO2 being generated, an oxygen flow rate of 7 to 9 liters/minute may not provide sufficient lung ventilation to remove or cast off excess CO2.

In other words, a flow rate of 7 to 9 liters/minute represents a minute-volume of 7 to 9 liters where the minute-volume equals the amount of air or oxygen inhaled in one minute.  Depending on the level of physical activity, a minute-volume of 7 to 9 liters may not be sufficient to ventilate the lungs with enough volume to cast off excess CO2 in order to maintain its equilibrium at normal levels.  

As CO2 is the primary byproduct of metabolizing blood sugar in the presence of oxygen, the amount of CO2 generated depends on the level of physical activity.  Just like the motor in your car, increasing physical activity increases the rate of metabolism and that increases the amount of CO2 generated.

The same thing happens when you step on the accelerator in your car.  Both systems consume more fuel and oxygen, and that results in an increase in the output of exhaust.  This is easy for a car’s engine as it’s equipped with separate intake and exhaust manifolds…  

We on the other hand, need to breathe much faster as our lungs must accomplish both functions.  We breathe faster when chemoreceptors in the brain stem and heart detect a rise in the CO2 level and in turn signal an increase in respiration and pulse rates in a homeostatic process to regulate the CO2 level back to normal.  

The other point to consider is CO2 works both ways…  Too much CO2 is bad and too little is good.  

When the CO2 level rises above normal due to constrained lung ventilation caused by oxygen therapy at lower flow rates with a NRB mask, this condition acts as a very powerful vasodilator that not only negates the beneficial vasoconstrictive/abortive effects of elevated oxygen levels, it also increases the time to abort.  In some cases, this condition (hypercapnia) makes an abort with oxygen therapy impossible.  

When we cast off CO2 faster than our bodies generate it by hyperventilating (hypocapnia) on 100% oxygen, we go into respiratory alkalosis, the arterial pH rises, and as hemoglobin has a greater affinity for oxygen as the pH rises, it caries more oxygen to the brain increasing the abortive effect.

Getting back to aborting your attacks with an oxygen therapy at a flow rate of 7 to 9 liters/minute…  What is your success rate and what is the average time to abort your attacks?  Are you able to remain seated and motionless while using oxygen therapy, or do you get up and dance as the pain increases?

Most of us who use oxygen flow rates high enough to support hyperventilation are able to abort our cluster headache attacks at consistently higher success rates and at a third the time it took at lower oxygen flow rates that did not support hyperventilation.  Most of us are also able to remain quietly seated during oxygen therapy up to Kip-6, but find the level of physical activity starts to increase rapidly at Kip-7 and above.  By Kip-8 to Kip-9 we’re in leg shake and rocking rapidly or up and dancing the tarantella or cha cha at a high tempo around the O2 cylinder.

Again, good question.  I hope this helps.

Take care,

V/R, Batch
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Re: new and hoping for info
Reply #21 - Oct 24th, 2008 at 5:59am
 
Just got done with a kip 8. took some imitrex and it wasn't quite able to stop it but i made a pot of regular coffee and pretty much slammed the first cup. amazing! it was almost instantaneous. It felt like it gave my imitrex army steriods to fight that beast. Thank you all for your info you don't know how much I appreciate it. This may allow me to conserve my imitrex and live to fight that bastard another day!
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Re: new and hoping for info
Reply #22 - Oct 24th, 2008 at 6:12am
 
Hi I've been using coffee as well, I find it helps sometimes but not on the peak CH's. Pretty nothing works on those but gritted teeth and the tango. What you might wanna give a try is push ups at onset or on the shadows.

I started my cycle early september and decided to try and go without any meds this time to see if it would shorten the cycle. As it seems to be tapering off now it might be that it helped, as I usually go 12 weeks(Going on 7 weeks now).

Get the 02 for the big hits, and do try the pushups, do as many as you can when you feel the beast closing in or you are shadowing. It worked wonders for me:-) Can't believe I didn't try it before Shocked

Max
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Re: new and hoping for info
Reply #23 - Oct 24th, 2008 at 10:14am
 
MaxPayne wrote on Oct 24th, 2008 at 6:12am:
Hi I've been using coffee as well, I find it helps sometimes but not on the peak CH's. Pretty nothing works on those but gritted teeth and the tango. What you might wanna give a try is push ups at onset or on the shadows.

I started my cycle early september and decided to try and go without any meds this time to see if it would shorten the cycle. As it seems to be tapering off now it might be that it helped, as I usually go 12 weeks(Going on 7 weeks now).

Get the 02 for the big hits, and do try the pushups, do as many as you can when you feel the beast closing in or you are shadowing. It worked wonders for me:-) Can't believe I didn't try it before Shocked

Max


       Pushups? I can't do no steenking pushups.

                       Potter
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MaxPayne
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Re: new and hoping for info
Reply #24 - Oct 24th, 2008 at 10:21am
 
Yea it took some time getting used to doing them again, but after a coupple of weeks I was doing 150 a night;-)
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