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Does a 70% reduction in frequency make me green?

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Katherine

(Member)
From: Kaleen
84 total posts
Currently suffering :(
08 Aug, 2012 - 7:06 am
Hi All - I noticed that Sara is in the green (congratulations) after dropping to 1 CH per night.

So, maybe I should change my status to green too smile

Since I've been on Isoptin and Maxalt the frequency has dropped right down and the number of painfree days per month has increased! YAY

Now I've had 2 months averaging 30 CH / month instead of 90-100 per month BM (Before Meds). It may also have helped that I left work in June so have dropped some of the stress of having CHs in public!

I could not believe the difference since finding 1. a neuro who recognised CH and 2. getting a treatment that makes a difference for me.

If this all makes me green - I'm switching my profile!

Best wishes to all and safe travels to those who are on holidays at that moment!!

Katherine
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saintpeter

(Member)
From:
606 total posts
Not currently suffering :D
09 Aug, 2012 - 7:37 am
hi Katherine,
going from three or more attacks per day to one is almost like not suffering, but i don't tempt fate, so it's either full on, or full off. Mind you, only a CH sufferer could go through an attack a day and consider it not really suffering- anyone else would be in the emergency room screaming the walls down.
But you're 100% correct re; finding an understanding neurologist and a medication regime that works. The difference is fantastic when you feel you're actually getting somewhere with your treatment, as opposed to the despair felt when nothing seems to help.
Great to hear, and fingers crossed for you getting rid of them completely.
cheers peter.
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Katherine

(Member)
From: Kaleen
84 total posts
Currently suffering :(
09 Aug, 2012 - 7:46 am
Thanks Peter - that's how I've been feeling - SOOOO much better now! But I agree that either it's on or it's off...

The reduction seems to have stablised at the moment, but I'm hoping for a complete move away from chronic CH! smile

Take care of yourself

Cheers
Katherine
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brodiec

(Member)
From: Southport
20 total posts
Not currently suffering :D
07 Oct, 2012 - 12:24 pm
Hi all, Im new to the CH scene and I only got diagnosed with it this week (after about 2 months of suffering multiple doctors time off work and many Mis-Diagnosis). my question is how long do you guys (and girls) go with out an attack before you consider yourself in the green. i have been going two months now with between 2-4 daily episodes. usualy 3 like clockwork, but in the last 24 hours i have only had one attack fairly minor about a 5-6 on the pain scale and a couple of shadows like one was going to eventuate but never did. i dont want to hold my breath and claim im in the green this early but in your experiences do your cluster generaly taiper off, or stop dead in the tracks? or could i just be lucky and be having a good day? finger crossed icon
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brodiec

(Member)
From: Southport
20 total posts
Not currently suffering :D
07 Oct, 2012 - 5:57 pm
Sorry scrap that theory two attacks in quick succession since getting home from work 4 hours ago
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Ben

(Member)
From:
116 total posts
Currently suffering :(
08 Oct, 2012 - 8:12 am
Somewhere in the Medical Journals I once read that 2 years remission means you are in the clear. But our bodies cannot read the text books...
I just had a record equaling stretch of 10 months remission, longest since about 1989 for me. I attribute this success to Vitamin D.

Get those Vitamin D levels tested! smile

Cheers, Ben.
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Katherine

(Member)
From: Kaleen
84 total posts
Currently suffering :(
08 Oct, 2012 - 9:08 am
2 years! ACK

RE vit D - it was funny that during the diagnostic stage of this process my GP did a full physical and found that the only 2 items that showed up a bit oddly were vit D levels and prolactin levels.

The vit D was within normal, but in the lower range of normal. The prolactin levels were high and unstable between check ups. The GP put me on a daily vit D3 supplement and ordered some other tests for the prolactin levels to rule out tumours etc - including an MRI which showed up a cyst attached to my pituitary gland. However, it is not impinging on anything and eventually was dismissed as the 'cause' of my CHs - rather something I was born with.

Katherine
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saintpeter

(Member)
From:
606 total posts
Not currently suffering :D
08 Oct, 2012 - 10:05 am
WOW, hella post brodie.
Having a good day- for sure. Remember what you did to make that happen, then repeat..., possibly for the rest of your life.
sometimes taper sometimes POP. You studying something?

Katherine- may I recommend jacking the Vit D to max? As well as eating properly, good food, fresh air- the usual shit. I just got back from Belarus; the difference in quality of air between there and here is asotnishing. The cyst thing-that['s like a zit right?
i'm close to green, Ben- about 20 days, but saying so will jinx that, and that scares me more than anything.
cheers peter.
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Ben

(Member)
From:
116 total posts
Currently suffering :(
08 Oct, 2012 - 10:15 am
Superstitious lot aren't we?
Sometimes you will see inconsistencies in my reporting remission whilst still set to red, or vise-versa. Last time I went to "green", I got belted, so it is a bit difficult to explain how superstition fits somewhere between the binary choice of RED or GREEN.
We need a button that is called "Have not had one for a while, still shadowing, scared shitless, but afraid to say" icon
Fear of CH seems to be incapacitating in its own right.

Cheers, Ben.
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saintpeter

(Member)
From:
606 total posts
Not currently suffering :D
08 Oct, 2012 - 10:49 am
It's not a fear, Ben, it's a dread (as i listen to Janis Joplin ). Very specific word.
It's a known quantity - and so much frightening because of it.
And oh yeah, I know that.
But, i'm yet to have an attack on Australian soil yet too. I'm sure that's going to be interesting.
cheers peter.
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Katherine

(Member)
From: Kaleen
84 total posts
Currently suffering :(
09 Oct, 2012 - 7:20 am
Hehehe - I like the idea of a third option between red and green Ben (but maybe it would end up being a murky brown?)

Thank Peter

I've been toying with the idea of max-ing the Vit D. Superstitious person that I am I haven't actually done it yet because I've slowly increased my pf days / month and don't want to fiddle!!

The cyst is a sort of fluid filled sac on my pituitary gland (right between the hypothalamus and the pituitary gland - sort of above and between the eyebrows). Apparently most people have them without symptoms and they only are noticed in MRIs when trying to check headaches, for example.

However, I've been a bit suspicious about the 'naaa - cysts in your head don't cause headaches - unless they're really really big...' - which mine isn't. But without an earlier MRI I don't know how long it's been there.

Regards
Katherine
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