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Mrsgrneyedldy

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Hey everyone, how is everybody good I hope! Sorry I've been away at the hospital w/ my lil guy for last 4 days; he has intractable epilepsy, so we went up there to begin the Ketogenic diet to see if that will help get better sezuire control! The Internet there was real shity! Anywho,I was able to finnally Bust again last nite! Yay! Definitely seeing results, they are slow but definite! Instead of my typical 6-8 hits in 24 I'm down to 1-3 hits, usually a lower pain level ( not always, mostly tho ) Shadows come and go now instead of seeming so constant. So yay its working slowly but surely! Thanks guys! Hope you all are well. Yay I'm home and have Internet now! :)

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...Definitely seeing results, they are slow but definite! ..

That is REALLY good to hear - it's stuff like that that really keeps the spirits up around here. Well it keeps my spirits up anyway.  :)

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Mrsg,

I can't even imagine playing with the deck you've been dealt.  I am in awe of how you have been dealing with lil guy's epilepsy and getting slammed as you have with clusters!  Good on you, and so happy to hear you're finally getting some relief. :)

BB

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Hello all. I'm new to this forum! I'm busy reading the archives. While far better than in my younger days, recently I've been in a long cycle of migraines, one three days, the shadow not leaving for months, and cluster headaches, though not so often. I found getting in a cold bath helpful. I've been reading a lot about cold therapy recently. It takes a bit of courage first time; I started with barely warm, got in then added more cold over thirty minutes, and it did most definitely help. It gets easier to do the cold water with each bath, adapting apparently.  I just made my first order of rc and mushroom,and hope I can begin to enjoy my retirement free of head pain.

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Doing great here, still hoping I can change the World for a better one ;D :P

And how are you Mrsgrneyedldy? Needing to bust again soon, or has the last one given you PF days??

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I'm doing okay,this is the time of year my cycle usually begins,well unfortunately when it began last year it never left. I did bust again Saturday nite! This bust was a a bit different,I seem to be getting some pretty bad slap backs,and they are hitting me really hard! I'm a survivor tho so I will make it thu! This cycle I'm sure has qualified me as chronic, and has been a pretty bad last 4 months so it's giving me a run for my money and I see being a bit hard to break! I'm determined tho! It will be broken! Sending much love n hugs! ;)

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I'm a survivor tho
Yea!!!, Mrs Green eyed !! You show tremendous determination. Since you probably now qualify as chronic, I guess it's normal the busting is a tough road.

I was blessed to get some Vitamin M,
If I'm counting well, you're due for another bust tonight, then... Do you still have Vitamin M left?

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Just busted w/ last of vitamin M, does anyone kno what's the longest it's taken a chronic in a very bad cycle to get it broken?  I was just courious. Anywho,I'm getting very sleepy now, let's just hope I can sleep tru the nite w/ no hits from the beast  slap backs  ect. Goodnite ya'all  8-)!

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We are all praying and keeping fingers crossed for you MrsGrneyedldy!!!!!

being episodic, I can't answer the above question, but I am sure someone here can!  You will break the beast!!!! I know you will!

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Hope you slept well MrsGrneyedldy xx

I'm chronic, and was getting hit every 1-3 days, 1-5 hits a day for over a year before I busted. I started busting on 15 Dec, and my last bust was on 8 Feb. In that time I had taken mushrooms twice, and RC Seeds 7 times.

In Jan I had a 12 day gap between clusters, and am now routinely experiencing 4, 5 & 6 day gaps. And, 90% of the time when I do get hit, it is very short and very mild. Since March 1st, I've only had 2 bad clusters (a 7 and an 8), and a hand-full that were 5 and below, mostly 3's.

Also, I've had only 1 migraine this year, which is unheard of for me to go 3 months with only 1 migraine! And, Jan/Feb are historically my worst months of the year for headaches and clusters!

So, keep it up. It does help.

xx MoxieGirl (aka Renée)

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Things are going pretty good so far a couple of shadows nothing real major.YAY! Found out fri. I need to have major surgery Tuesday! A little worried about the pain meds I will have to take! Anyways in the middle of cooking dinner,I'll explain my fears a bit later!

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Okay,I'm very reluctant to post this about my surgery, but I have to get some opinions, I have to have a complete hysterectomy, which means they will want to put me on hormone therapy! Scary, see my migranes and CH get pretty unruly around my time of the month and I've never been able to take birth control,it makes my headaches go haywire. So my fears are they will send me home on major narcotics which also make my headaches worse, but they will want me to take hormones which will also cause chaos.Ive gotten so hopefull w/ busting and actually gaining some control over my insanity,now the Dr.s are putting a wrench in it! Im so confussed and anxious bout all this! >:(

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Hugs.  Understandable concerns.

Last time I saw my neuro, he suggested I come off my daily dose of oestrogen because, for genetic women who have migraines, stopping HRT usually stops their migraines. Didn't work for me though, and I find things better being on them.

So professionals don't always have the answer.

When I was transitioning, and taking massive amount of body altering hormones, one of my doctors switched my hormones to a patch version, and it is after this that my headaches got massively worse, and the clusters started. My neuro says it doesnt matter which hormones I took, that my hypothalmus was per-disposed to clusters, and changing my hormones triggered it. But I don't think so. I had been on a different hormone for months with no negative sideaffects. It wasn't till I switched that I was messed up for life. 

So my advice would be to try different hormones. I had tried one that gave me a migraine within an hour of taking it, but others had no such affects. So maybe there is one out there that works for you.

Hope it all goes well.  Xx MG

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It is of course very difficult to predict on each individual. I wonder what the outcome on your health would be if you don't have an hysterectomy done. Anyways... One thing seems clear, clusterheads have chemicals imbalance, would it be D3, testosterone, serotonin... I personally think these are not the cause of the CH, but they are certainly related. All these chemicals, hormones, serotonin... are managed by the hypothalamus ultimately, so it's surely related. You say your ''CH get pretty unruly around my time of the month''. This sounds like a major hormones imbalance at that particular moment, triggering high cycle.

So... I think it could be beneficial to a clusterhead to have these hormones regularized artificially so to have no more imbalance on the sexual hormones side.

I base my thinking on this thread at ClusterHeadaches.com where Donna had started a thread on Testoterone in dec. 2008, thread still (more or less) alive. A few male clusterhead had their testosterone checked, foud out it was low, had testosterone replacement therapy started which fixed their chronic headaches.

http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl?num=1228226896

Here is what Donna was writing in another thread, just a few days before starting the Why don't we take a look a this thread:

''It's when I had my hysterectomy (uterus and both ovaries) that the cycles ended for good. That's also when I started hormone replacement therapy, which I continued (for 27 years) until just last year.''

This (short) thread can be found here http://www.google.com/url?q=http://www.clusterheadaches.com/cgi-bin/yabb2/YaBB.pl%3Fnum%3D1227982344&sa=U&ei=uqhmT_PyBvH4sQK2htW2Dw&ved=0CAQQFjAA&client=internal-uds-cse&usg=AFQjCNE2b3nATPR4g2lQk5Fc6ZHPs_-19Q

Basically, what Donna tells is that every time she got pregnant, her cycle rocketed to the roof, then stopped until after her pregnancy stopped, and that for the last 28 years or so, since her hysterectomy, she has been pain free.

Hard to tell though if this major surgery would have the same effects on you, and this is irreversible surgery, so I certainly understand your fears. But I think it's worth searching more. Maybe you ought to post at CH.com and ask if there are more women who saw their CH end after hysterectomy.

Hope that helps

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Thanks Moxiegirl and Purple, See I'm just the opposite of Donna the girl you discribed, My cycles stop during pregnancy and return w/ a vengence after words! After my last baby March 30,2011 my Ch returned on march 31st 2011 and this time never went away in the fall and winter like they use too, they've always got worse after each pregnancy, this last one they became chronic. I've done lots of research & I'm no more sure of how to feel or what to do than I was before.I guess I'll leave it in Gods hands from this point on, surgery is tues. Thanks guys for your input! Sending Lots of love and Hugs! :-*

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MrsG,

That sucks, but it does happen. Sometimes we have no choice in the female dept.

Personally, Progesterone doesn't have an effect on my CH. I stopped it for three months when I started on the D3 supplements. When I started back, I did not get an uptick in CH. They can tailor your replacement therapy, make them!

As for birth control pills, I could not take them once the CH started. At the time, they knew certain hormones would kick in migraines and that is what they had diagnosed me as having WRONG!!!! They were CH.

All the best of luck. It takes a while to get over that operation and you are going to have your hands full. Especially with a little one to take care of. I really hope you have home help planned and available.

Take care of yourself! :-*

spiny

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Honey, if you're not sure about the hysterectomy get second, and third opinions. Especially on the hormones! I'd request to see an endocrinologist to find out WTF your hormones are doing right now with you in cycle!

Is the hysterectomy for some other medical reason? I've had them suggest I get one since I was like....14 because my periods were so bad and nothing pisses me off MORE. You DO NOT remove an organ because you can't figure out what the fecking problem is!

Mystina

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Update; surgery is done! Got home from hospital thurs. and I had no clue what I was in for,o.m.g pain is intense and I'm a very active person, but now need help to make it to the bathroom to pee, he he he! Funny but not funny, very slow recovery! Oh and I of course would not let any Dr. Take my organs unless absolutely nessecary! It was very nessecary! My worry wasn't do much about the survey just about the hormones the will want to give me now! Had no clue the surgery would be such a huge deal and not such an easy recovery, yes I did lots of my own research, just didn't believe it take ME so long to bounce back! But I'm a survivor and I will! CH is getting very active again and I need to bust but can't cause I'm on pain meds now! Very messed up deal! Any ways I'm alive and kickin, and will return w/ a vengance! Sending lots of love and hugs! Love me MrsGrneyes :D

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Actually you can try to bust while on pain meds if needed. I haven't had 'em interfere / change it, but that's just me... If things are really bad, since you kinda need to lay there and recover, I'd attempt it.

Hope you recover quickly! Feel better!

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