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Kvsbailey

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Are they coming back???
Jan 4^th, 2016 at 9:45pm

I am new to this site (and hopefully am posting correctly!). I suffered from episodic CH's for 20 years. They would come like clockwork every March /April but every two years. They would last for months until my neurologist finally got the right medications and dosage. After trying almost all, Topimax was the one that worked and every two years I would be on it for at least 4-5 months until the episode would stop. The last episodes I successfully was able to avoid the full headaches by starting the medication at the slightest feeling of headache onset.
I have been in remission now for almost 8 years. I don't know why, nothing changed but I thought that finally maybe this was over.
For the past two weeks however, I have had a very very dull reminder "shadow headache". Back of my neck is tight, dull ache in my eye, and side of nose but nothing beyond that. I am starting to get really scared that maybe my luck has run out. Or maybe I am bringing it on myself with worry. It is only in the evening.
My question is if anyone truly ever goes into full remission or should I start taking preventative medicine so it doesn't start.

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MDR CH.com Old Timer Offline I love YaBB 1G - SP1! Posts: 265 Elysburg Pa. Gender:	Re: Are they coming back??? Reply #1 - Jan 4^th, 2016 at 9:55pm I wouldn"t procrastinate. Mark.
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Peter510 CH.com Alumnus Offline Don't give out... But don't give in. Posts: 966 Wexford. Ireland Gender:	Re: Are they coming back??? Reply #2 - Jan 4^th, 2016 at 10:14pm Hi there, Welcome. I would go with Mark's advice and start on the preventatives straight away. I don't know if anyone truly goes into permanent remission, but I've never heard of it. Peter.
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LasVegas

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Episodic CH since 11 yrs
old, now 50.

Posts: 2020
north of the 60th parallel
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Re: Are they coming back???
Reply #3 - Jan 5^th, 2016 at 12:12am

My suggestion is to load up on the D3 right away and get your meds lined up. Always good to have a healthy vitamin regimen going regardless and better to stockpile and not need it, than to not have anything and go into a frenzy because you weren't prepared.

Keep positive...it probably will not happen and it's just a false alarm, so go on with your life as productive as normal and have a stockpile of meds just in case.

-Gregg in Las Vegas

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

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Are they coming back??? Reply #4 - Jan 5^th, 2016 at 2:10am Get on the vitamin D regime before the checks in. Hoppy
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Kvsbailey CH.com Newbie Offline I Love CH.com! Posts: 2	Re: Are they coming back??? Reply #5 - Jan 5^th, 2016 at 7:36pm Thanks everyone for your advice! And for this site....
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mrsbenson03 CH.com Newbie Offline I Love CH.com! Posts: 10	Re: Are they coming back??? Reply #6 - Jan 6^th, 2016 at 10:39pm Please update us on whether you ended up starting your cycle or not. Hoping for complete remission for you!
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drmatt

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Re: Are they coming back???
Reply #7 - Apr 16^th, 2016 at 11:42pm

Kvsbailey wrote on Jan 4^th, 2016 at 9:45pm:

I am new to this site (and hopefully am posting correctly!). I suffered from episodic CH's for 20 years. They would come like clockwork every March /April but every two years. They would last for months until my neurologist finally got the right medications and dosage. After trying almost all, Topimax was the one that worked and every two years I would be on it for at least 4-5 months until the episode would stop. The last episodes I successfully was able to avoid the full headaches by starting the medication at the slightest feeling of headache onset.
I have been in remission now for almost 8 years. I don't know why, nothing changed but I thought that finally maybe this was over.
For the past two weeks however, I have had a very very dull reminder "shadow headache". Back of my neck is tight, dull ache in my eye, and side of nose but nothing beyond that. I am starting to get really scared that maybe my luck has run out. Or maybe I am bringing it on myself with worry. It is only in the evening.
My question is if anyone truly ever goes into full remission or should I start taking preventative medicine so it doesn't start.

I have gone into remission for over 5 years. I don't know if this will last. So far, so good. However, unlike you, I never found any benefit with medications, O2, etc.

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Hoppy CH.com Alumnus Offline LAUGHTER IS THE BEST MEDICINE Posts: 1890 Perth WA Gender:	Re: Are they coming back??? Reply #8 - Apr 17^th, 2016 at 1:08am CH's are known to go into remission for years in some folk, and then out of the blue the rears it's ugly head. One of his favourite times to pay you a visit is after a 7yr remission. So, never let your guard down. Hoppy
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Batch

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Control The Beast With
O2 & D3 You Must

Posts: 3706
Bremerton, WA
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Re: Are they coming back???
Reply #9 - Apr 17^th, 2016 at 10:07am

DrMatt,

Welcome to CH.com. Spontaneous remission from CH is always a topic of interest around here. Given human physiology is relatively straight forward and predictable, there's likely a reason for the spontaneous CH remission. The trick is finding it.

How long have you lived in San Diego area? Do you have an estimate in hours of your whole body solar radiation a week? As far as outdoor activities go, do you play tennis, go to the beach, go surfing or fishing frequently?

Finally, when was the last time you had your serum 25(OH)D tested. If it was within the last five years, what was the serum concentration?

Thanks and take care,

V/R, Batch

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