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amber
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For the women on the board....
« on: Mar 28th, 2003, 3:53pm » |
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Hey ladies.
I was wondering about birth control. I know they say that clusters don't seem to be regulated by hormones but I was wondering how many of you also suffer from migraines and whatever, and how many of you have changed pills because of it?
I use depo-provera, which uses just progesterone and makes it so there is no major flux in hormone for the 12 weeks or so until the next dosage. It seems to be better than having a drop in hormones every few weeks, but I just can't be sure.
What's your experience?
Amber
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ave
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Re: For the women on the board....
« Reply #1 on: Mar 28th, 2003, 5:12pm » |
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Amber, a number of things.
That drop in hormones you would get anyway, with an ordinary "natural" cycle. The pill just regulates it on a median level.
( also: Depo-provera is even more "unnatural" then the much maligned pill.)
I used to have migraines all my fertile life, with or without the pill.
After the change of life (when I had some very painful migraines) I changed over to cluster headaches. No more migraines. Except the time I used some oestrogen cream. Back came the migraines...
So yes, I think for me there may be a hormonal component.
But mind that the female cycle with all the hormones kickingin at different moments, and after some other hormone has reached a certain peak, is so intricate, that doctors stille haven't got it all figured out.
Let alone they would find out about clusters...
And then there are the girls with clusters AND migraines, but without a cycle...
Go figure
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amber
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Re: For the women on the board....
« Reply #2 on: Mar 28th, 2003, 5:30pm » |
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ave...thanks for responding.
That seems to be me, which is why I was wondering.
I'm still working on diagnosis, although it seems to be changing...first it was "clusters"..now it's "cluster migraines" and cervicogenic headaches to boot. I was curious because I used to be on the pill and I was off the pill for a year. And yes, I was aware that the flux happens no matter what, I just wondered if anyone had any luck with or without them. I think you answered it pretty well....basically you know about as much about it as I do 
And yup, depo is more unnatural because I don't get a cycle at all, but it's one of the first lines of defense when I started on this cycle (my first chronic cycle) that started last july. Before that my headache was a few times a month..now it's daily..so we started looking at things that may help..including the stupid "tmj" help and "stress management" LOL....yeah....that worked.
It's about time to get my next shot and I'm wondering If I should do it again or If I should just go au natural. hmmm *me thinks*...
thanks again 
amber
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dizzyd
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Re: For the women on the board....
« Reply #3 on: Mar 28th, 2003, 6:14pm » |
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Hi Amber,
I take Nor-QD which is a progesterone pill only (because I smoke and I am over 40) so there is no flux with my estrogen until I start my cycle. However that being said I get wicked migraines and clusters that one week. This has always been a problem with me. Doc says it is the change in my hormone levels but has yet been able to relieve the problem. Apparently it is more thing to just "suffer" through!!
DizzyD
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hdbngr
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Re: For the women on the board....
« Reply #4 on: Apr 1st, 2003, 10:27am » |
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I switched pill brands a few times early on, thinking that might help, then tried Depo, no avail.
Last year, I had an IUD added, which is nice because you don't have to think about it, or worry if there is nausea. One less chemical in the bod, but the headaches didn't go away. Sigh.
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Roxy
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Re: For the women on the board....
« Reply #5 on: Apr 1st, 2003, 11:24am » |
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Vanasa,
Just be careful with the IUD. I had one before, and somehow managed to lose it. Needless to say, that loss resulted in a little boy named Tyler.
Dr. still can't figure out how I lost it or where it went.
Tracey
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Linda T
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Re: For the women on the board....
« Reply #6 on: Apr 1st, 2003, 12:42pm » |
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Hi Amber, you've brought up a subject that I take very seriously. I believe that without birth control, I go into cycle. Here's why:
1984 - first cycle. Doc changed my pill. 4 months while on this "new" pill I was getting hit and then when I changed back again the ch stopped.
1995 - second cycle. Stopped birth control to get pregnant. Went into another 4 month cycle.
1997 - third cycle. Immediately after birth of my son. Only lasted 2 weeks. (Think hormones were running amuck).
2001 - fourth (and last - so far) cycle. Brain surgeon that I am (as if the first three cycles didn't convince me the bc or lack thereof put me into cycle), I decided to stop bc and go with an IUD. I was taking depo. 2 months after stopping the depo I went into cycle. That one lasted 6 months. My first three cycles were mild compared to this one. Sometimes I would get as many as 10 hits a day/nite. By April 2002 I couldn't take it anymore. I had the IUD yanked and started the depo again. 2 weeks after getting the depo shot the ch stopped. Now, 1 year later, I still feel the pain/pressure for a few minutes at a time (Kip 1-2) every day but that's about it. Haven't stopped the depo yet and don't think I will.
I don't think that hormones play a big part with alot of women who have CH but I'm pretty sure it does with me.
Good luck and wishing you all PFDAN always, Linda T
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amber
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Re: For the women on the board....
« Reply #7 on: Apr 1st, 2003, 5:29pm » |
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Linda
that's a really interesting find.
I know that with any women here who have migraines as part of their headache dilemma, the pill or hormones in general, can play a part. I just don't ever believe in blaming them for our headaches.
But if you don' thave migraines at all and you still notice this, I find it even more fascinating.
I Personally really like the depo for many reasons...one of which is the lack of extreme drop every few weeks that could set me into a tailspin. I'm pretty sure I'm chronic unfortunately, but I think my headaches would be doubly bad during that time were it not for depo. Either that or I would get some sort of migraine attack with it. Lord only knows what I'd do with that.
Thanks for the post!
Amber
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WendyHowe
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Re: For the women on the board....
« Reply #8 on: Apr 1st, 2003, 6:48pm » |
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Amber
This may be no help but I am an migraine and Ch sufferer.
Quick summary.
No migraines when on the pill
Can't take pill now
Got migraines when I stopped taking it.
Can block most of them by taking very large doses of Oil of Evening Primrose from ovulation to start of period, then take Zomig for the few that break through. (Oil of Evening Primrose also seems to reduce or remove the PMT and zits too)
None of the above seems to have had any effect on CH.
Wendy
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hdbngr
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Re: For the women on the board....
« Reply #9 on: Apr 2nd, 2003, 4:41pm » |
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Yikes Tracey. 
They mentioned that IUD's could be expelled, but said you would know if it happened. Guess not. Think I might ask the Doc to check if it is still there... I'm not up for any more surprises right now.
Any of you ladies that may be taking Fiorinal for pain and the pill at the same time, you should have a little sticker on the pill bottle that says "may counteract birth control".
Lack of said sticker on my bottle became a very busy 3 year old little boy named Noah.
Feverfew extract is also becoming notorious in obstetric circles. It "cancels out" some bc pills.
Linda: That's interesting. Wish we had a way to do a survey among all of the female sufferers out here. How many of us, what age now, age of onset, type of bc used, any change in pain near cycle? I would like to chart the results to see how many of us are affected, and in what ways...
Any ideas on how to do this?
It would also be nice to put an end to the "Women rarely suffer from clusters" statement.
Wendy:
Is Oil of Evening Primrose an herbal thing? Is it a supplement?
V
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amber
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Re: For the women on the board....
« Reply #10 on: Apr 2nd, 2003, 5:39pm » |
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headbanger (i can't do it without the vowels, man  )
evening primrose oil is an herbal remedy that can be found in most health food stores. Supposed to be very good for those pms'y type things...cramps, bloating...men
Amber
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kimmyv1966
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Re: For the women on the board....
« Reply #11 on: Apr 2nd, 2003, 5:58pm » |
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wo, u guys sure got me thinkin now!
before 1995, i was on birthcontrol pills...never had a cluster, didnt even know what it was then....then...
1995, couldnt remember to take the damn things...out popped little jocelyn 9 months later.
1996, tried depo....got strange blotches on my face(still have to this day), dropped depo immediatedly, insert of IUD.
IUD has been good to me, but....1997/1998...onset of ch's....doc says hormonal...i say bullshit...but, mabey so...
oh, amber....here i go again....going thru the "hey, mabey's and why's"....
interesting point though...thanks.
KimmyV 
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Wendy the Brit
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Re: For the women on the board....
« Reply #12 on: Apr 3rd, 2003, 9:34am » |
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Oil of Evening Primrose is the Oil from the Evening Primrose Plant. I am not into herbal remedies at all as a rule but this one works and is generally a non-risky, healthy thing to take anyway 9good for your skin and hair)
It is a very rich source of GLA ( Gamma Linolenic acid)
This is nutrient which is used in the production of prostaglandins, which in turn, seem to help regulate your body's hormones.
When I have had hormonal fluctuations during different times in my life, the doctors often try and prescribe things like extra progestogen (makes me bleed all the time and go funny in the head), but I have always got on better taking 1000mg of Evening Primrose Oil for the latter two weeks of my cycle. It takes a month or so to work, but for me it is nothing short of miraculous. My husband loves it so much that he said he would buy me a lifetimes supply. (When I have a bad hormone time and I don't take it I throw breakable things at him)
Hope this helps
Wendy
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hdbngr
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Re: For the women on the board....
« Reply #13 on: Apr 3rd, 2003, 1:31pm » |
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Due to demand (not just Amber!), I think I'm gonna add some vowels soon...
Gimme an "E", Gimme an "A"...
Evening primrose oil helps with men? I am at the herbal foods store first thing Saturday morning!
Everyone duck! Wendy's got a vase!
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Linda T
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Re: For the women on the board....
« Reply #14 on: Apr 3rd, 2003, 7:45pm » |
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Glad to see that there is such an interest in this subject. I sometimes feel that I don't really fit the "CH mold" (if there is such a thing). I mean, I don't get the classic "it hits me every fall/winter/summer" thing. Don't get me wrong. I have been diagnosed a clusterhead and my symptoms are pretty classic. I have no doubt that what I have is ch.
As for migraines- I wouldn't know one if I fell over one. Not sure that I ever had one. However, there was three days in November of 2001 that I couldn't get out of bed and couldn't move my head because of the pain. Light hurt my eyes. This could have been a migraine. Funny thing is that during that 3 day period not 1 cluster (and this was about the time that I was having roughly 4 per day). Headache/Migraine ended and the ch came back.
Wishing you all PFDAN always, Linda T
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amber
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Re: For the women on the board....
« Reply #15 on: Apr 3rd, 2003, 11:42pm » |
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sounds like it may have been a migraine 
I think it's important for us ladies to stick together. There are more of us out there than we think, and there are different things expected of us, no matter how updated we are.
It's interesting you know....I've really noticed that since this really long cycle has been in place that my attitude has gotten more "bitchy." It reminded me very quickly that women are "supposed" to behave a certain way, even under duress. There's marriage, work, the *kids*, household things. Guys have that too, don't get me wrong. I would never presume to know what they go through. All I know is that women have certain obligations to these areas of our lives, and we're expected to be the backbone, the social glue that holds it all together. It's very hard to do when you're in pain all the time....and then our doctors tell us we're either depressed or dealing with "emotional issues"...grrr
anyways, that's just my new rant for tonight under the heading of "woman"
Have a great evening!
amber
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Wendy the Brit
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Re: For the women on the board....
« Reply #16 on: Apr 4th, 2003, 4:34am » |
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Hello Amber
Hello All
Men accuse us of being ratty because of the 'time of the month', they juggle far less and then call it 'stress'.
(I could go on endlessly but won't)
Little picture below says it all
http://uselessgraphics.com/momday2.gif
P.S. I can't whinge really, I only have one kid and work, Cathy has 5 and a job as well.
Wendy
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kimmyv1966
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Re: For the women on the board....
« Reply #17 on: Apr 4th, 2003, 7:41am » |
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Here is my salute to us women....
yes, we need to stick together....
Here's to all the negativity in our lives(ch's, mentally challanged men, med's that dont work, doctors, insurance co.'s...etc..etc..etc...)...
http://www.slabearkazad.com/sniff/#click
Wishing u all pf days and less stress...
KimmyV
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I'm on a train, but there's no one at the helm.
And there's a demon in my brain starts to overwhelm. And there it goes, my last chance for peace. I lay me down, but get no release...
(3b)
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Wendy the Brit
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Re: For the women on the board....
« Reply #18 on: Apr 4th, 2003, 8:13am » |
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Linda
I know there are lots of different types of headache and many mimic each other in some of their symptoms but your attack does sound like migraine. The sensitivity to light is usually a good indicator of migraine.
The really good news is that unlike CH, migraine is really quite easily treatable now with the modern drugs. You don't need to suffer for days any more. The OTC drugs like migraleve are, for me, very little use at all but I can kill a migraine stone dead in less than an hour if I take Zomig as soon as I feel it beginning, and lie down in a cool dark room with my cold flannel on my temple (I use a white wine chiller sleeve to keep refreezing the flannel)
Even better if you can have an hour or two's sleep as well as soon as the pain is subsiding as you can also kill most of the 'thick head' aftermath as well if you do that. (of course none of the above works for CH for me)
Some Ch sufferers (e.g. Jonny) find that Zomig works for their Ch as well, but it is truly a little life-saver for me for migraine. I have even got hit driving on a motorway, dry swallowed a Zomig and been functioning in a meeting 30 minutes later.
Love to all the girls and mums on the board again, especially those with husbands, girlfriends/same sex partners, sons and daughters in Iraq.
Wendy
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kimmyv1966
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Re: For the women on the board....
« Reply #19 on: Apr 4th, 2003, 8:29am » |
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Wendy,
Just my 2 cents.
Zomig also works for me within an hour. If it wasn't for it, I don't think I would be here today...
KimV
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I'm on a train, but there's no one at the helm.
And there's a demon in my brain starts to overwhelm. And there it goes, my last chance for peace. I lay me down, but get no release...
(3b)
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pywacket
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Re: For the women on the board....
« Reply #20 on: Apr 14th, 2003, 3:24am » |
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Ive had migrains since I was 10, at 30 had a total histerectomy and my Ch started now Im 52 and have both. Im on the hormone patch, Zomig is good for clusters but Imitrex is better for migrain the thing is somtimes I get them at the very same time. My daughter has Ch and also has migrains. Investigation says it runs in familys. When I get clusters I get very dipressed they last for months the longest was 9 months and I almost went crazy. dipression pills are also prescrived but they dont work for me Ive taken them all Prozac, Paxil. etc. Yes I think hormones do have some efect since things got worst since the histerectomy. Well hope women come out and talk about Ch since they used to think only men had them. 
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ave
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Re: For the women on the board....
« Reply #21 on: Apr 14th, 2003, 4:08am » |
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About IUD's being expelled....
What they teach you over here, is to check every now and then if the thing is still in place.
If you are used to the sponge or the diaphragm as a bc measure or if you use tampons, checking if your IUD is still there should be no big deal.
Just slide in two fingers and gently probe around. IUD's come with two stiffish bits of nylon thread (that they will use to pull it out again eventually). You should be able to feel them protruding from the cervix.
If you can do it this way, why make a doctor rich, hm?
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cleon
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Re: For the women on the board....
« Reply #22 on: Apr 18th, 2003, 8:37am » |
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 Making a post under my friends password, wondered if this would help confuse matters even more.
Aged 12 - migrains started
Only times I was migrain free was during pregnancy (twise)
Aged forty - still migraining and also CH's
Aged fifty - demanded Hysterectemy to see if it would give me any relief as I was now in a bad way and spending 4 weeks at a time in bed or hospital.
After surgery both headaches had settled down sooooo much, but not totally gone.
Am taking double strength doses of Estrogen and Progensterone - every day - to keep hormone levels stable. Bye Sue
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