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New CH.com Forum › Cluster Headache Help and Support › Getting to Know Ya › Hi-I am new here!

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Hi-I am new here! (Read 1078 times)

Kristen

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Oklahoma City
Gender: female

Hi-I am new here!
Nov 6^th, 2009 at 11:35pm

Hi! My name is Kristen and I live in Oklahoma City, OK. My husband is a CH sufferer and has been for almost 3 years now. His cycles usually hit in the spring but with going cluster free this spring we were kinda waiting for the next cycle to hit and boy did it ever. He is on week 6 of this cycle and these are the worst he has ever experienced. The docs have had him on Topomax, imitrex, tylox, morphine and those did nothing. The only thing he can take to help with the CH is Maxalt. He is now having about 4 CH a day. He has seen a neurologist but he didn't seem too concerned with my husband so now we are waiting a referral to a headache specialist here in OKC. I hope to make him an appointment on Monday. Would be fantastic to get these under control. Anyhow - I wanted to introduce myself here, I cannot believe that this website is only 1% of the world's sufferers...I think that statistic is wrong.

A lot of great information here and I am glad I found you all! Many blessings for a pain free weekend!!!

"Not all who wander are lost."

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Guiseppi

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San Diego to Florida 05-16-2011

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SAN DIEGO, CALIFORNIA USA
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Re: Hi-I am new here!
Reply #1 - Nov 7^th, 2009 at 10:28am

Another golden supporter....you guys rock our world! Smiley

My wife found this website for me many years ago and saved my sanity. You haven't mentioned oxygen in his treatment. You'll hear it preached a lot on the board because the sucess rate is incredible. Read the "oxygen info" link on the left, complete with pictures! I can abort an attack in 6-8 minutes using oxygen. Been a CH sufferer for 31 years, used to have to ride out 90 minute attacks...so the 6-8 minute thing is a whisker better. Wink

Thanks again for being proactive on behalf of your husband. Hope he appreciates the gem you are. Now drag his butt in here so we can make his acquaintance.

Joe

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

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bejeeber

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Gnashville
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Re: Hi-I am new here!
Reply #2 - Nov 7^th, 2009 at 11:14am

Hi Kristen,

What Joe said, plus something that I think is important about your husband's Imitrex prescription:

Injections are the most effective form. Often the only effective form. Considering that it was lumped in with the "did nothing" drugs you described, I imagine he may have been prescribed pill form? if so, that'd be STOOPID, but expected from a doctor.

If he hasn't tried injections yet, that prescription needs to be changed yesterday and <very important> he can double the amount of doses available to him while halving the risk by following the guidelines in the link "Imitrex Tip" on left of the forum view here.

From what I've seen it's rare for an imitrex injection at the onset of a CH attack to fail to abort it (I'm no medical professional though. Hmmm maybe that gives me MORE credibility. Cheesy

)

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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Kristen

CH.com Newbie

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Posts: 3
Oklahoma City
Gender: female

Re: Hi-I am new here!
Reply #3 - Nov 7^th, 2009 at 11:40pm

Thank you so much for your support! I have been nagging my husband (Jeff) to get on these boards...he will I promise!
From reading this site I have mentioned the Oxygen treatment and that is something we are going to talk to the specialist about. We would love to have that handy - but we are dealing with the military insurance here so I will have to see what it is we can do. The imitrex injections and nasal spray we have asked for from the base but they said he would have to go through a bunch of tests for that and the doc did not want to do it - reason for requesting..wait no demanding for him to go see a specialist here in OKC. I will make that appointment on Monday - really looking forward to that. Thanks so much everyone! I feel so at home here!

"Not all who wander are lost."

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Jeannie CH.com Sponsor Offline Live, Laugh, Love.... Posts: 2333 St Louis, Missouri Gender:	Re: Hi-I am new here! Reply #4 - Nov 7^th, 2009 at 11:51pm Hi Kristen! Thanks for being a support to your hubby! Just wanted to stop by and welcome you! Jeannie
Back to top	"It's all a grand illusion when you think you're in control." ~ Kenny Chesney IP Logged

catlind

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Surf's Up!

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Weaverville NC
Gender: female

Re: Hi-I am new here!
Reply #5 - Nov 8^th, 2009 at 9:29am

Kristen wrote on Nov 7^th, 2009 at 11:40pm:

We would love to have that handy - but we are dealing with the military insurance here so I will have to see what it is we can do.

Kristen, I'm a milspouse, and have military insurance as well. Initially we had to fight to 3rd level appeal to get the O2, but since then (10 years ago) they write the script, fill it and pay for it without even batting an eye. There are many many military families here, and we will do all we can - include the patient advocate at the base in your battle - to get you the O2 that you need.

Feel free to PM me any time or email me catlind@charter.net

Cat

A true friend is someone who reaches for your hand and touches your heart.

If yer gonna be stupid, ya gotta be tough

Who is John Galt?

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