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New CH.com Forum › Cluster Headache Help and Support › Medications, Treatments, Therapies › "I'm back" 5 years 9 months remission

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"I'm back" 5 years 9 months remission (Read 1934 times)

Nancy

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I live for every pf minute

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"I'm back" 5 years 9 months remission
Nov 4^th, 2012 at 6:23pm

I'm sorry to say "I'm back" 5 years 9 months remission!

I am grateful that my remission was so long this last time. This remission was 5 years and 9 months and I was very grateful for each and everyday. This was my 2nd to longest remission, my longest was 7 years. I have been getting clusters since I was 17 years old, but was misdiagnosed until I was 42 years old. Knowing I have clusters and not migraines allows me to put these monsters back in remission within 15 days by taking Prednisone. Thanks goodness I am a episodic cluster sufferer and not a Chronic! Only 10-15% of cluster sufferers are Chronic, and Men are 2 - 3 times more likely to have cluster headaches than women.
I came out of remission last night with a moderate cluster! I think it was moderate because I had a feeling for over 10 days that I may be coming out of remission, so I started taking my Prednisone 3 days before I came all the way out of remission. Dang...I wish they would go away forever!! I feel so bad for the chronic sufferers my heart goes out to all of you!!

« Last Edit: Nov 4^th, 2012 at 6:57pm by Nancy »

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AussieBrian

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CH - It's all in your
head!

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Cairns, Qld, Australia
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Re: "I'm back" 5 years 9 months remission
Reply #1 - Nov 4^th, 2012 at 11:41pm

Sorry you had to look us up again, Nancy. It's the club no-one wants to join yet so few ever leave. On a brighter note, some things have improved a bit and may make it a bit easier for you.

Oxygen therapy has come a long way with a new mask and much higher pressure proving fantastic for many, so check out the 'oxygen info' button on the top left of your screen. Also Red Bull of all things has been giving good results for those who chug one down at the first hint of a hit.

There's a thread on the Medications Board titleed '123 days PF' that's well worth a read and our friends at clusterbusters.com are reporting very good results using alternative methods that were laughed at 5yrs and 9 months ago.

Most importantly, welcome. We're on your side and we care.

My name is Brian. I'm a ClusterHead and I'm here to help. Email me anytime at briandinkum@yahoo.com

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LasVegas

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Episodic CH since 11 yrs
old, now 50.

Posts: 2020
north of the 60th parallel
Gender: male

Re: "I'm back" 5 years 9 months remission
Reply #2 - Nov 5^th, 2012 at 11:31pm

Hi Nancy,
Almost 6 years is a fantastic reprieve from the beast! I also had a 6 year remission up until last Fall. I believe my 6 yr remission was due to a closed head injury/coma. Have you given thought to what you think may have attributed to your long remission?

We have several new treatments that have proven effective for many of us. Lots of reading for you to learn.

You mention you started a Prednisone taper, what dosage did you start at?

What preventative med and at what dosage did you start?

Remember you are never alone. We are here for you and truly understand your living nightmare! Don't be a stranger Wink

-Gregg in Las Vegas

Wishing everybody at CH.com less pain w/ more productivity in their lives in 2019

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japanzaman CH.com Veteran Offline I Love CH.com! Posts: 210 Fukuoka, JAPAN Gender:	Re: "I'm back" 5 years 9 months remission Reply #3 - Nov 6^th, 2012 at 9:13am I recommend doing a little reading up just in case the beast decides he wants to break the rules this time around. Wouldn't be the first time that has happened.
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alan

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I love YaBB 1G - SP1!

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Re: "I'm back" 5 years 9 months remission
Reply #4 - Nov 14^th, 2012 at 7:31pm

Hi there,
Me too. after a 4 year 6 month remission i had a mild one 2 nights ago and a moderate one last night. I thought i had outgrown these things. so i understand from reading the Board that there are some new remedies. my old gig was 60mg pred, 240mg verap for 2 weeks then a taper down. it worked pretty well. is that still a regime people follow? also my imitrex needles are 4 years old - does it really matter (they are so expensive) and finally i heard there is an imitrex nasal spray - dose it work?
not happy to be back but thank God for you guys.
I remember one bought 7 or 8 years ago where I think this site saved my life. I really really feel bad for chronic sufferers.
alan

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