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Ohio_Danimal

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At it again after close to 3 year remission
Mar 3^rd, 2016 at 11:21am

Very strange cycle. Started almost a month ago,but not the typical cycle. Will wake up at 3am with one kicking. If I inject right away, and it hasn't kicked in all the way to insanity level, three times I have now gone close to a week without a follow-up attack.
Two nights ago though, two attacks and as bad as any I remember ever. Last night only one, and caught it early.
So gave in an called my Dr. Going to see him Monday and am hoping no strange cocktail mix is given to try to end the cycle, as the last cycle was almost 4 months longs 3 years ago, and the different drugs given to try to end it had me feeling like a Zombie.
So looking for support out there from the only people that might understand me and my fear. Am 55 yrs old and have been suffering from CHs since my teens.
Don't want to start seeing my Shrink again, although he's a great guy and helped a lot in the past
Don't want to go back on anti-depressants as a result of the mental hole these cycles throw me into.
Just want to be normal again, or long enough to forget about the pain for a while.

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Joshua

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Re: At it again after close to 3 year remission
Reply #1 - Mar 3^rd, 2016 at 11:40am

Hi Ohio_Danimal,

So sorry to hear you're experiencing such pain. I've been dealing with this for 20 years, and I know how awful it can be when a long pain free period comes to an end. And I know how it can disrupt all aspects of life. I had been mostly pain free for about 3 years. In that time I met and married someone who had never seen me in a cycle, but as of 3 months ago, I've begun one.

It potentially changes everything, my challenge is to let it change as little as possible, though even the smallest things are hard to maintain (gym membership, after work activities, etc.) -- and part of the trick is accepting (for me) that I am in a cycle. I tend to be such an optimist that I think every headache may be the last, but the reality is, it's probably not.

So I have to respect the beast, see the docs, prepare a support network, and try to get on with life as I work through it.

Hang in there, this is a great forum, happy you are comfortable sharing.

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Mike NZ

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Re: At it again after close to 3 year remission
Reply #2 - Mar 4^th, 2016 at 4:50am

Ohio_Danimal wrote on Mar 3^rd, 2016 at 11:21am:

So looking for support out there from the only people that might understand me and my fear. Am 55 yrs old and have been suffering from CHs since my teens.
...
Just want to be normal again, or long enough to forget about the pain for a while.

This is something that we all understand as everyone here either has CH or we support someone with it. So the longing to be "normal" again is perfectly understandable.

As for the fear element, have you a range of abortives you can use to kill off a CH when you get one? Typically this will be having oxygen, injectable sumatriptan (also known as imitrex or imigran) or similar?

Are you using any preventives to cut down how many CHs you get? Something like verapamil, lithium or topamax as examples?

Similarly have you looked at using the vitamin D3 methodology as a preventive (it's very effective for a lot of people, including myself)?

Once you have an effective preventive that works for you plus abortives you'll find that a lot of the fear factor drops off.

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Ohio_Danimal

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Re: At it again after close to 3 year remission
Reply #3 - Mar 4^th, 2016 at 3:13pm

Guys, yes, I have been on every and all types of treatments for over half my life. I stockpile Imitrex injectors in off times and split my doses.
After a close to 3 year remission, one of my longest, the fear is still rampant as ever. ALL in-cycle regiments (up to including Lithium) leave me feeling like shit, and pretty much incapable of working as well.
O2 only helps if I catch the sucker early, so not often when they happen while asleep (for me at least) leaving an injection as the option.

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Mike NZ

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Re: At it again after close to 3 year remission
Reply #4 - Mar 4^th, 2016 at 3:48pm

Ohio_Danimal wrote on Mar 4^th, 2016 at 3:13pm:

ALL in-cycle regiments (up to including Lithium) leave me feeling like shit, and pretty much incapable of working as well.

In which case I'd give vitamin D3 a go, it doesn't leave you feeling rough or anything like that, plus it is pretty effective for a lot of people. PM Batch and he'll give you all the details.

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MDR CH.com Old Timer Offline I love YaBB 1G - SP1! Posts: 265 Elysburg Pa. Gender:	Re: At it again after close to 3 year remission Reply #5 - Mar 4^th, 2016 at 3:51pm you should really look at getting on the D-3 regiment Mark.
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thierry CH.com Alumnus Offline I Love CH.com! Posts: 406 Galway, Ireland Gender:	Re: At it again after close to 3 year remission Reply #6 - Mar 4^th, 2016 at 4:05pm Mike NZ, NDR +1
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maryo

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Johnny & Roy puzzle where
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Re: At it again after close to 3 year remission
Reply #7 - Mar 8^th, 2016 at 9:45pm

I have a patternless pattern the last two months. Most of the headaches were actually moderate instead of the usual Kip 8-10. You know how you get so caught up in coping that you can't see the bigger picture. It finally dawned on me that I've gone from episodic to chronic. This is after I had a couple of light activity years where my neuro thought I was maybe growing out of them. I am 64. Neuro retired, have just started with a new one. No matter how much this sucks, it's better than the 25 years I had with no diagnosis. Keep the faith.

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Peter510

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Re: At it again after close to 3 year remission
Reply #8 - Mar 9^th, 2016 at 4:58am

Maryo,

The official definition of chronic is 12 months continuous, with no more than a couple of weeks' break.

At 2 months it might be a bit early to concede that you've gone chronic.

The Neuro might be right, you could be growing out of it and this is the Beast's last hurrah.

Hopefully. Keep the faith.

Peter.

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Mike NZ

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Re: At it again after close to 3 year remission
Reply #9 - Mar 9^th, 2016 at 4:49pm

Hi Maryo

There is no difference between a CH that someone who is episodic has and one that someone who is chronic has. It is simply a label to denote that the CH cycles are long with an arbitrary time of the cycle exceeding a year without a break exceeding a month.

All the usual drugs like verapamil, imitrex, oxygen, etc. will keep working just the same, so do not stress about this.

And a 2 month cycle whilst not being your usual pattern is by no means anything to panic about. It is perfectly normal for CH to change on people with common changes being cycle length, timing of CHs, side of the head, which medications work and many more.

Keep working with your new neuro and things should settle down.

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BarbaraD CH.com Alumnus Offline Hugs to ya Posts: 8333 Douglasville, TX Gender:	Re: At it again after close to 3 year remission Reply #10 - Mar 11^th, 2016 at 5:20pm I'm with the others on the D3 regimen.. Give it a try.. All you've got to lose is your headache.
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tangerinearmy

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Re: At it again after close to 3 year remission
Reply #11 - Mar 17^th, 2016 at 8:01am

Ohio_Danimal wrote on Mar 4^th, 2016 at 3:13pm:

Guys, yes, I have been on every and all types of treatments for over half my life. I stockpile Imitrex injectors in off times and split my doses.
After a close to 3 year remission, one of my longest, the fear is still rampant as ever. ALL in-cycle regiments (up to including Lithium) leave me feeling like shit, and pretty much incapable of working as well.
O2 only helps if I catch the sucker early, so not often when they happen while asleep (for me at least) leaving an injection as the option.

Busting with pylicybin is the way forward

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