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Hi There (Read 1861 times)
TBelle
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Hi There
Apr 28th, 2009 at 2:51am
 
Hi everyone!  I'm TBelle from Georgia, I've saw this site a few times and wanted to become part of it.
I have suffered from Cronic Clusters for 18 years now, and have never personally met anyone else who has had them.
I just want to say that its nice to know that I'm not alone in this battle of unexplainable power of pain.
I did start a new treatment this year that I have never tried before and I have to say that it seems to be working for me.  I would love to share it with you and see if anyone else has tried this as well.  I have taken almost every drug that there is for these beast and nothing ever works well for me, due to me having cronic episodes which involve up to 9 episodes a day for around 11 weeks. 
But my doctor gave me prednisone 80mg tablets 2 times daily to go with my oxygen, and Imitrex ( which I want to share another story about Insurance and Imitrex later).  But this seems to help me at this time.  I've only been clustering for 9 weeks now but we all know it will soon end.  If  you have never tried the prednisone I think you should offer it a chance when you talk to your doctor.

My next topic is that I found out that my Insurance company can deny my Imitrex medication due to it being a high risk medication for your heart.  I take 100 mg tablets that I break into quarters for each episode and have taken this ritual for years, only now my Insurance company tells me I can have 18 tablets a month and no more.  I bet whoever came up with that for Insurance has never had a cluster or seen someone have one.
I think my Insurance company had rather us be drug addicts and addicted to pain killers which have a worse effect than Imitrex could ever have in the long run.  If anyone else has ran into this same senerio I would love to hear about it.  I spent literally 3 days on the phone with the Pharmacy and the Doctor and the Insurance and I hate to say it folks, but the Insurance company won, during the days I don't have Imitrex I have to take percocets by the 2's during each episode.
Please share your experience's and the outcome of what you did during this experience with Insurance.
Until next time may god grant you the courage to endure your pain during your attacks.  You will each be in my thoughts when I am having my attacks and saying GOD why me again and again and again.
I envy any of you who do not have cronic clusters.
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Mrs Deej
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Tornado Alley
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Re: Hi There
Reply #1 - Apr 28th, 2009 at 10:22am
 
This Topic was moved here from Editing Your Profiles by Mrs Deej.
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"I don't know the key to success, but the key to failure is trying to please everybody" - Bill Cosby
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DennisM1045
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Re: Hi There
Reply #2 - Apr 29th, 2009 at 4:43am
 
Hi TBelle,

Welcome!  It's about time you joined up  Wink  Now that you have, you'll never be alone. 

Prednisone is a transitional therapy aimed at giving you a break until some other preventative medication has a chance to work for you in the long term.  It is typically perscribed as a taper that starts with a high dose and 'tapers' down over time.  Without a preventative the beast may be really pissed once the taper is done.

Insurance limitations on Imitrex are all too common these days.  I mainly use Oxygen therapy and only occasionally have to turn to my precious Imitrex supply.  I also use injections instead of pills.  The pills take too long to work.  Check out the Oxygen info on the left panel for more info.  It works for about 70% of us.

Here are some other links you should read through.  There are many better options out there than narcotics and Imitrex pills.  They work too slowely for cluster pain.

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Good luck... I wish you many PFDAN!

-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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Guiseppi
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SAN DIEGO, CALIFORNIA USA
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Re: Hi There
Reply #3 - Apr 29th, 2009 at 11:21pm
 
Dennis has given you some serious reading to do. I'll echo what he said about prednisone. At doses as low as 30 mg a day it'll provide 100% relief for me, but it's a short term med as long term use can cause you some serious health issues. And a strong vote for oxygen therapy. 31 years and oxygen is still my first line and most effective abortive.

Welcome home! Wink

Joe
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"Somebody had to say it" is usually a piss poor excuse to be mean.
 
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BarbaraD
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Douglasville, TX
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Re: Hi There
Reply #4 - Apr 30th, 2009 at 6:25am
 
I ditto the O2 therapy. Used PROPERLY, it does the trick for me also (as it does for about 70% of us). Please read the info Dennis gave you.

A pred taper is usually used to get a prevent into your system and working - not for long term use.

We've all complained about the insurance problem at one time or another. BUT imitrex will mess with your heart if you use too much. We've had a few here who've developed some heart problems because of it. And the injections work a lot quicker.

Narcotics are about useless for CH and will cause rebounds. Be careful with them. Even Excedrin will cause rebounds if taken regularly (and they work great for me - just can't take them very often). Try a can of Red Bull in place of the Percocet. Has as much CH fighting power and doesn't cause rebounds (as far as we know to date).

Melatonin at night ( 6-18mg) works pretty well on a lot of us to get the beast at bay during the night. Works great for me - I sleep like a baby during the night (most of the time) and don't get hit except during the day, but I'm "rested" and waiting for the sob.

Welcome to Clusterville. We've got a lot of information here. Pull up a chair and READ READ READ...

Hugs BD Kiss
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What don't kill ya, Makes ya stronger!
 
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