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Carole

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Thank You for being here
Jul 5^th, 2010 at 9:20am

Hello, My name is Carole. I stumbled across this site in search for more answers. I cried so hard when I read the stories....it is a relief to know there are people who know the devastating pain I go through. I have had ch since I was 16, not formally diagnosed until I was 30. I began a cycle the 28th of June after a 6 year remission.
This has been difficult. I do not have insurance for the first time in my life. I knew I needed oxygen. Friday I paid the astronomical rate for an office visit, the doc gave me an order for oxygen. I felt relief that I was going to make it through the holiday weekend....I was wrong. That night I had a ch every hour...I was out of oxygen by 2a.m. Saturday night was my worst nightmare. I was up all night. Desperate Sunday morning I called a major medical supply thinking they surely have to be open 24-7-365. I was wrong. I came back to this site hurting exhausted and desperate. Somewhere I read that I could go to the fire station and they may help me. It worked!!!! I only had 2 ch last night and I was able to abort both..... slept. Thank you so much. Carole

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Guiseppi

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Re: Thank You for being here
Reply #1 - Jul 5^th, 2010 at 10:27am

Ouch. CH without insurance coverage, what a nightmare. If you haven't tried Red Bull, it's an effective abort for the lighter hits for me, and will also prevent the come backers I'm prone to within 10-20 minutes of shutting off the 02.

You might want to take a look at clusterbusters.com They are enjoying a high success rate and having no insurance this might be a viable option for you.

Joe

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"Somebody had to say it" is usually a piss poor excuse to be mean.

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JustNotRight

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Re: Thank You for being here
Reply #2 - Jul 5^th, 2010 at 11:22am

Carole I can empathize with the no Ins. and CH thing been there done that, Don't want to ever go through that again!

I'm glad you found some aid at the fire dept. they are a godsend.

See if your doc has any abortive samples he can give you too that way if you run out of O2 you have that to fall back on.

Praying things get better for you soon. Wink

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Carole CH.com Newbie Offline I Love CH.com! Posts: 4	Re: Thank You for being here Reply #3 - Jul 5^th, 2010 at 12:13pm Hi Ginger, Thank you. What kind of abortive medication? Throughout my ch history I have used vascular/ migraine medications. Nothing worked until oxygen. What should I ask for? Thanks for any help you can give Carole
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bejeeber

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Re: Thank You for being here
Reply #4 - Jul 5^th, 2010 at 12:38pm

Carole,

I advise that you pay close attention to advice from Giuseppi. he's a 30+ year clusterhead (as am I), who, with aid from this forum, has figured out how really beat this CH beast back (as have I).

He mentions looking into clusterbusters.com, and I second it, as we've seen some folks having such success with it that they shut down entire CH cycles. Cold.

Here's a video regarding that relatively cheap clusterbusting approach:

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There has also been very favorable coverage of clusterbusters in Newsweek, National Geographic, and none other than Harvard Medical is getting involved with medical trials.

The Newsweek article that came out this year is no longer online, but it's 2 web pages can be downloaded as webarchives that can be opened on your computer here:

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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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JustNotRight

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Re: Thank You for being here
Reply #5 - Jul 5^th, 2010 at 3:35pm

Carole wrote on Jul 5^th, 2010 at 12:13pm:

Hi Ginger, Thank you. What kind of abortive medication? Throughout my ch history I have used vascular/ migraine medications. Nothing worked until oxygen. What should I ask for?
Thanks for any help you can give
Carole

By all means Stay on the Oxygen but ask your doctor about other abortives that you may not have tried yet. Not sure if you've tried Imitrex injections but they have proven helpful to many. Be sure to discuss this with your Doc and let him/her know what a hard time you have been having. A well informed Doctor is a better Doctor.

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If you are going through hell...Just keep going

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bejeeber

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Re: Thank You for being here
Reply #6 - Jul 5^th, 2010 at 3:48pm

I don't know of any more powerful abortive med than Imitrex (injections, not pill form).

I am a hi flow / non rebreather O2 enthusiast, but I keep imitrex injections on hand and ready to go in case needed as a back up.

They are so not cheap though, hence the cheap/powerful/non toxic/clusterbuster suggestions above.

If you do get your paws on some imitrex, this tip will help tremendously with stretching your doses:

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Plus I know Glaxo, makers of imitrex, have some kinda free or low cost thing they do to help out the non wealthy without insurance.

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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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JustNotRight

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since 2005 aka GingerS224

Posts: 1300
Wilkes-Barre, Pa (USA)
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Re: Thank You for being here
Reply #7 - Jul 5^th, 2010 at 3:49pm

bejeeber wrote on Jul 5^th, 2010 at 12:38pm:

Carole,

I advise that you pay close attention to advice from Giuseppi. he's a 30+ year clusterhead (as am I), who, with aid from this forum, has figured out how really beat this CH beast back (as have I).

He mentions looking into clusterbusters.com, and I second it, as we've seen some folks having such success with it that they shut down entire CH cycles. Cold.

Here's a video regarding that relatively cheap clusterbusting approach:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

There has also been very favorable coverage of clusterbusters in Newsweek, National Geographic, and none other than Harvard Medical is getting involved with medical trials.

The Newsweek article that came out this year is no longer online, but it's 2 web pages can be downloaded as webarchives that can be opened on your computer here:

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

Multimedia File Viewing and Clickable Links are available for Registered Members only!! You need to

or

I too would be mindful of Joe's advice as he often gives excellent advice.

I would like to point out however that the length of time you have suffered with CH, be it longer or shorter does not mean that you do not have valuable advice and help to offer.

Edited to fix typo

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« Last Edit: Jul 5^th, 2010 at 3:50pm by JustNotRight »

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An eye for eye only ends up making the whole world blind.
M.K. Gandhi

If you are going through hell...Just keep going

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Lettucehead

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Re: Thank You for being here
Reply #8 - Jul 5^th, 2010 at 10:13pm

Hi Carole!
Welcome and I'm sorry you had to be here...

Just a thought, but you may want to look into welder's oxygen. From what I understand, it's pretty reasonable compared to medical grade o2 for a really similar product. There are several people who have written some threads about it if you look around.

Another thing to think about is if there are any medical clinics around you that are subsidized to provide care to people with low or no insurance. Here in Iowa, we have clinics in several towns/cities throughout the state called 'Free Clinics of Iowa' that are staffed by volunteer medical providers - there, people can get free care on a 1st come 1st served basis. Also, if you are given a prescription at one of these clinics and take it to a designated pharmcy, you get the medicine free.
Many states have similar programs.

Again, just some thoughts...
Please, keep us up on how you're doing! Hang in there!!!

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Listen, and understand. That terminator is out there. It can't be bargained with. It can't be reasoned with. It doesn't feel pity, or remorse, or fear... 'The Terminator' AKA CH

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