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Great! Now im addicted to this site… (Read 3290 times)
uncle-cluster
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Great! Now im addicted to this site…
Dec 17th, 2008 at 2:14pm
 
Great! Now im addicted to this site…
I’ve been all alone since 2002 and now I found you  Grin
I have been reading a lot and not getting any work done…lol..

Thanks for all the love & knowledge you spread
im 29 - With chronic CH since 2002 , misdiagnosed till about ’06
( it’s all a blur)  Shocked  and 4 days with you guys I found out so much. Thank you!  Nice place to be around..  keep it up

I will add a question for Imitrex injection users:
When do you use 02 (do them together ..)?
and are you scared to use too many injection ?
(im not.. should I be? )

Also – can anyone walk my beast for me tonight ?  I’ll return the favor …


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« Last Edit: Dec 17th, 2008 at 2:17pm by uncle-cluster »  
 
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George
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Re: Great! Now im addicted to this site…
Reply #1 - Dec 17th, 2008 at 2:47pm
 
I'm afraid there isn't any rehab, either.  Get used to it.   Wink

uncle-cluster wrote on Dec 17th, 2008 at 2:14pm:
Also – can anyone walk my beast for me tonight ?  I’ll return the favor …




Send the &^%$# over this way--it's cold enough here, that maybe I can freeze his azz.

Best,

George
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Jackie
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Re: Great! Now im addicted to this site…
Reply #2 - Dec 17th, 2008 at 3:24pm
 
Sorry uncle-cluster.  We're all addicted.  Some of us have had the CH.com monkey on our backs for years.  There is no treatment or cure....might as well just settle in.

Welcome!! Smiley
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uncle-cluster
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Re: Great! Now im addicted to this site…
Reply #3 - Dec 17th, 2008 at 3:32pm
 
I know..
Maybe I should have added in my last post (question) that when taking too much im talking about 5,6 injections a day … my doctor hears that and gets a hart attack… (so I lie about those days). 
This does not happen everyday. Some days are 1 ( got lucky days with 0)  but like today so far I had 2 (one more through the night maybe)


So again.. (I don’t know if I should push this question cuz im not sure I would listen..)but any ideas about the heavy use ? is this "hevy" for chronic CH ? should I worry too much ?
(please say no..) 
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Jimi
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Re: Great! Now im addicted to this site…
Reply #4 - Dec 17th, 2008 at 3:43pm
 
Someone else will have to answer the question regarding the imitrex as I have never took it by injection. When you feel one coming on, does the 02 not stop it by itself?

I would only use the injectors when I am out somewhere without 02 around.

We clusterheads are known for having an addictive nature. There are worse things to be addicted to than this board lol.
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Re: Great! Now im addicted to this site…
Reply #5 - Dec 17th, 2008 at 3:49pm
 
Welcome!  Sorry for the reason.

If you look at the list of choices down the left side of the main CH.com menu, the 7th link down is for "Imitrex Tip".  In there, you will find a suggestion from DJ regarding extending your injections so that you're not taking as much per shot.  Food for thought.

Fingers crossed for more PFDs!

Scott
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Melissa
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Re: Great! Now im addicted to this site…
Reply #6 - Dec 17th, 2008 at 3:49pm
 
uncle-cluster wrote on Dec 17th, 2008 at 3:32pm:
I know..
Maybe I should have added in my last post (question) that when taking too much im talking about 5,6 injections a day … my doctor hears that and gets a hart attack… (so I lie about those days).  
This does not happen everyday. Some days are 1 ( got lucky days with 0)  but like today so far I had 2 (one more through the night maybe)


So again.. (I don’t know if I should push this question cuz im not sure I would listen..)but any ideas about the heavy use ? is this "hevy" for chronic CH ? should I worry too much ?
(please say no..)  

When you say you're doing 5-6 injects a day, are you using the full dose?  Because many people are finding they can abort with a 1/2 or 1/3 of an injection either using the imitrex tip  (link is on the left of the screen) or getting their scripts filled in vials, instead of the auto injectors, and using diabetic syringes to administer 2mg at a time.
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« Last Edit: Dec 17th, 2008 at 3:50pm by Melissa »  

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Jeannie
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Re: Great! Now im addicted to this site…
Reply #7 - Dec 17th, 2008 at 4:10pm
 
I've been a CH.COM junkie for close to a year now.  It happens!

I don't have 02 yet.  I understand that many get relief from it within 10 mins or so if you start it right at the beginning of a hit.  People also use Red Bull or coffee to help the 02  do it's job more quickly.  Then, if the 02 doesn't work, resort to the Trex.  Too much Trex is dangerous.  It also causes you to get MORE HAs. 

Take care,

Jeannie
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uncle-cluster
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Re: Great! Now im addicted to this site…
Reply #8 - Dec 17th, 2008 at 4:13pm
 
When I was first introduced to IMITREX - I was talking 2 injections for every attack ( it was the relief I found after 4 years … ). Im down to one full injection in the last year, but in bad times I may still need a second.
So im using a whole shot now. I feel that I have too and I always try to hold myself back from talking the second…  (most of the time I can).
Taking less than one?  ill do the test but I doubt it will work. I know my friend cluster and he will just come back about an hour later if I didn’t feed him enough.

No luck with the 02 but from my last post I found  that I may have been taking it wrong (i just dont remember - back in 2002)… so im on the case with that!   
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ClusterChuck
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Re: Great! Now im addicted to this site…
Reply #9 - Dec 17th, 2008 at 4:32pm
 
uncle-cluster wrote on Dec 17th, 2008 at 2:14pm:
Great! Now im addicted to this site…

And this is bad in what way?  LOL!

Yes, many of us share the same addiction ... I suppose there could be worse ones ... Like addiction to sex ... Oh wait ... that is a good one too ... Hmmm ...

uncle-cluster wrote on Dec 17th, 2008 at 2:14pm:
Thanks for all the love & knowledge you spread

There IS a payment required for that love and knowledge given to you ... As you will learn in life, NOTHING is free ... The payment required is to pass it on to others.  As you learn more and more about this condition, pass it on to the ones that don't know it.  Pass on the love and respect that YOU have received, to those just coming aboard.  Continue this, and we will accept it as "Paid in FULL."

uncle-cluster wrote on Dec 17th, 2008 at 2:14pm:
I will add a question for Imitrex injection users:
When do you use 02 (do them together ..)?

O2 is always my FIRST line of defense.  It is only during a VERY bad hit, AND O2 is not working do I take a shot.  I do not take a full shot.  Using the tip already mentioned, and found under the tab on the left side of your screen, I take 1/3 a shot.  BUT I only do this once the O2 has failed to work, and ONLY for a very bad hit.  If it is less than a KIP 7, I just wait it out.

uncle-cluster wrote on Dec 17th, 2008 at 2:14pm:
I will add a question for Imitrex injection users:

and are you scared to use too many injection ?
(im not.. should I be? )


YES!  You should be!  First you need to know some of what it is doing to your body.  Imitrex is a vassal constrictor, and remains in your system for several hours, even if another hit occurs.  When you take another shot, you constrict again, or further.  You may have an area in your system where there is a plaque buildup, even if your cholesterol levels are fine, and there are no symptoms of it being there.  Or, you may have an area where the vassal structure is not as elastic as other areas, even at your young age.  With the residual effects in the system, and then taking too many full shots, you are really playing with fire.  Even though you have done it in the past, you never know when it will hit you hard.  ONE time, it could be the time that it will block off an artery fully, and if it is in the right area, DIRT NAP time!

uncle-cluster wrote on Dec 17th, 2008 at 2:14pm:
Also – can anyone walk my beast for me tonight ?  I’ll return the favor …


I keep trying to take the hits away from others, but the ba$tardly beast never listens!


So please, use OXYGEN first and foremost, and only rarely resort to the Imitrex.  We want you around for a LONG time!  Besides, I always need someone to pick on and tease!  LOL!



Good luck, my friend, and continue asking and probing for the best way for you to do battle with your beast!


Chuck


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CAUTION:  Do NOT smoke when using or around oxygen.  Oxygen can permeate your clothing or bedding.  Wait, before lighting cigarette or flame.  

Keep fire extinguisher available, and charged.
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uncle-cluster
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Re: Great! Now im addicted to this site…
Reply #10 - Dec 17th, 2008 at 5:33pm
 
thanks for your posts...  Smiley
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RichardN
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Re: Great! Now im addicted to this site…
Reply #11 - Dec 17th, 2008 at 6:32pm
 
  PLEASE (for YOUR sake) . . . get the proper regulator and mask and try the 02 again . . . and let us know when you get it . . . I or someone else will gladly walk you through it's use.  If it works for you, you'll be able to greatly reduce your dependence on the trex.

  Be Safe,   PFDANs

    Richard
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I can live with the beast as long as I don't have to "dance" with the bastard.
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Re: Great! Now im addicted to this site…
Reply #12 - Dec 26th, 2008 at 11:29am
 
sorry this is a little off topic but how in the world do you get your hands on enough imitrex to take 5 or 6 a day??just curious,,,it took an act of congress to get my 8 shots per 30 days.  sorry to hijack

-jason-
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uncle-cluster
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Re: Great! Now im addicted to this site…
Reply #13 - Dec 29th, 2008 at 9:41am
 
TarHeel-blues wrote on Dec 26th, 2008 at 11:29am:
sorry this is a little off topic but how in the world do you get your hands on enough imitrex to take 5 or 6 a day??just curious,,,it took an act of congress to get my 8 shots per 30 days.  sorry to hijack

-jason-

I actually get from my insurance 40 injections a month. I don’t use 6 everyday but will have days that it come to that (this passed friday for example I was around that number) at first I was given 30 and then got then to up it to 40…
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sheena.t
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Re: Great! Now im addicted to this site…
Reply #14 - Dec 29th, 2008 at 9:27pm
 
[table][tr][td]-jason- [/quote]
I actually get from my insurance 40 injections a month. I don’t use 6 everyday but will have days that it come to that (this passed friday for example I was around that number) at first I was given 30 and then got then to up it to 40… [/quote]




I feel so fortunate that I live in the UK. I don't know what I would do if my injections were restricted.
I was also like you and have up to 6 per day. I tried splitting the doses down to half and found that it worked after a while.
The second dose requirement for you could be a rebound CH which I find can happen.      I also have oxygen in unlimited supply aswell now and can generally keep the dosages down to a minimum but do still need the 6 doses sometimes.
Do please give the O2 another try, It has helped me a lot and I do use them both together when the O2 is just not shaking it.

I think I'm addicted too but this time for all good reasons Smiley
Sheena
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uncle-cluster
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Re: Great! Now im addicted to this site…
Reply #15 - Dec 30th, 2008 at 12:38pm
 
sheena.t wrote on Dec 29th, 2008 at 9:27pm:
           
I actually get from my insurance 40 injections a month. I don’t use 6 everyday but will have days that it come to that (this passed friday for example I was around that number) at first I was given 30 and then got then to up it to 40…
+
I feel so fortunate that I live in the UK. I don't know what I would do if my injections were restricted.
I was also like you and have up to 6 per day. I tried splitting the doses down to half and found that it worked after a while.


Let me make a correction … its not that my insurance gives me 40 (no limit on insurance for me ether – insurance through Israel )but that’s all I can pull from my doctors. im sure that i can pull more on a bad month... just need to bang on my Doc's house door

and I got to have the full shot… no splitting
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Re: Great! Now im addicted to this site…
Reply #16 - Dec 30th, 2008 at 11:28pm
 
uncle-cluster wrote on Dec 29th, 2008 at 9:41am:
TarHeel-blues wrote on Dec 26th, 2008 at 11:29am:
sorry this is a little off topic but how in the world do you get your hands on enough imitrex to take 5 or 6 a day??just curious,,,it took an act of congress to get my 8 shots per 30 days.  sorry to hijack

-jason-

I actually get from my insurance 40 injections a month. I don’t use 6 everyday but will have days that it come to that (this passed friday for example I was around that number) at first I was given 30 and then got then to up it to 40…


wow,,40
Smiley Smiley
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« Last Edit: Dec 30th, 2008 at 11:29pm by TarHeel-blues »  
 
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uncle-cluster
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Re: Great! Now im addicted to this site…
Reply #17 - Jan 30th, 2009 at 10:42am
 
TarHeel-blues wrote on Dec 30th, 2008 at 11:28pm:
uncle-cluster wrote on Dec 29th, 2008 at 9:41am:
TarHeel-blues wrote on Dec 26th, 2008 at 11:29am:
sorry this is a little off topic but how in the world do you get your hands on enough imitrex to take 5 or 6 a day??just curious,,,it took an act of congress to get my 8 shots per 30 days.  sorry to hijack

-jason-

I actually get from my insurance 40 injections a month. I don’t use 6 everyday but will have days that it come to that (this passed friday for example I was around that number) at first I was given 30 and then got then to up it to 40…


wow,,40
Smiley Smiley


Depends where you live in the world… or better yet where you have Insurance
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uncle-cluster
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Re: Great! Now im addicted to this site…
Reply #18 - Jan 30th, 2009 at 10:49am
 
I really don’t know what all this babble is about (i didnt know it was such a problem...) I know that in England you can get as many as you need and I get mine from Israel
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Re: Great! Now im addicted to this site…
Reply #19 - Jan 30th, 2009 at 11:28am
 
im no doctor but more than 2 a day and you are really playing roullette with your life.  (or so I was told).

May I suggest trying Zyprexa (maybe get a sample).  Not many use it but those who do know that 1 or 2 pills can work for an entire evening if it works for you.

BUT FIRST!!!!!  GET O2 and try it again.   Follow the instructions  and we can all help you get set up right.

If these aren't good enough, my opinion would be to try and find another abortive. 

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You've overstayed your welcome since the day we met but it doesn't seem to matter to you.  No medications are your master, nothing makes you fret, it's a helpless feeling having nothing I can do
 
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Re: Great! Now im addicted to this site…
Reply #20 - Jan 30th, 2009 at 12:16pm
 
uncle-cluster wrote on Jan 30th, 2009 at 10:49am:
I really don’t know what all this babble is about (i didnt know it was such a problem...) I know that in England you can get as many as you need and I get mine from Israel



Not quite correct. You get it on script (so it's what the Dr says you can have)and we all pay a set amount no matter how much. If I remember right nasal shots are about £145 each but we get  a box say of 12 for £8. We do have to pay a national insurance out of our earnings but it does not equate to the real cost of drugs. We are lucky in that respect.

I don't know how dangerous sumatriptan is. My GP said she didn't think you could OD on it. In bad times I have used a lot but I will always go for O2 first. As rule I keep everything to it's lowest level and in the past when the hits were too much I gave in to need. My use of suma is about 1 a day.

All treatments are a trade off, even O2.  A balancing act where the stakes are high. Getting control with the minimal use of drugs is without a doubt the best way.

Ellick
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Re: Great! Now im addicted to this site…
Reply #21 - Jan 30th, 2009 at 2:34pm
 
FramCire wrote on Jan 30th, 2009 at 11:28am:
im no doctor but more than 2 a day and you are really playing roullette with your life.  (or so I was told).



5-6 a day are for the crazy days… 1,2 for bad days and free days with 0 are for people that don’t have this problem.. hehe..  I don’t take that amount everyday! Somehow I always make it on the 40 injections im given (so I do the math..)
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uncle-cluster
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Re: Great! Now im addicted to this site…
Reply #22 - Jan 30th, 2009 at 2:39pm
 
Ellick wrote on Jan 30th, 2009 at 12:16pm:
uncle-cluster wrote on Jan 30th, 2009 at 10:49am:
I really don’t know what all this babble is about (i didnt know it was such a problem...) I know that in England you can get as many as you need and I get mine from Israel



Not quite correct. You get it on script (so it's what the Dr says you can have)and we all pay a set amount no matter how much. If I remember right nasal shots are about £145 each but we get  a box say of 12 for £8. We do have to pay a national insurance out of our earnings but it does not equate to the real cost of drugs. We are lucky in that respect.

I don't know how dangerous sumatriptan is. My GP said she didn't think you could OD on it. In bad times I have used a lot but I will always go for O2 first. As rule I keep everything to it's lowest level and in the past when the hits were too much I gave in to need. My use of suma is about 1 a day.

All treatments are a trade off, even O2.  A balancing act where the stakes are high. Getting control with the minimal use of drugs is without a doubt the best way.

Ellick


Look.. at first I used to pay %15 of the cost of each injection. this came out to about $20 (American). After doing this for about a year, I got on the “chronic” list and I pay a flat fee for all my meds. I pay this no matter if I buy meds or not ( as if I ever didn’t…)
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