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amandaN
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sadest cluster day
« on: Aug 24th, 2004, 3:39am » |
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I've had clusters for 14 yrs, past 3 have been chronic. They have been under control with Topomax,neurontin and zoloft (took along time, and lots of diff drugs to find what works) till now...6 wks ago shadows started, then went out of control, having them every 2 hrs during the night, and couple in the day. I just found out I'am pregnant (headaches went away with my 1st pregnancy right away  , not this one, I think they are getting worse and I am not suppose to take any meds, I hate to say this, but for the 1st time they are stronger than me. The doctors wont put me back on meds unless I terminate the pregnancy. O2 has never worked so it isnt an option. My family is telling me my health needs to come 1st and sadly the baby 2nd..but how do you admit that to yourself? I despies these things right now and I am sorry to everyone who has to deal with them.
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pubgirl
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Hello Amanda
I'm really sorry about the CH, but congratulations on the pregnancy  .
Unfortunately pregnancy doesn't always 'cure' CH for the duration, though for some it does, so don't give up hope yet, please, the pregnancy effect may kick in when the early stage pregnancy hormones calm down.
Surely it is worth giving 02 another go, maybe with a different mask and set up? What did you use before when it didn't work?
The other good thing about 02 is you can safely use it while breast-feeding too (if you plan to do that)
There isn't really another safe option that I've heard of, so why not try it? Nothing lost if it doesn't work and no harm to your baby.
Wendy
Added (sorry had to go before I had finished writing)
If it helps, I went headache free in the fourth month of pregnancy until four days after the baby was born. I tried to stay off the drugs, but couldn't so started taking them again and baby happily had bottles. I didn't have 02 in those days, so I don't know whether it would have worked or not.
Whatever ANYONE says to you, this is your life and your baby and YOUR decision. Do not let your family influence it, get counselling from someone who can help you objectively rather than take counsel from those who have a personal slant on things.
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| « Last Edit: Aug 24th, 2004, 5:22am by pubgirl » |
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ExPat_jac
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Re: sadest cluster day
« Reply #2 on: Aug 24th, 2004, 5:11am » |
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on Aug 24th, 2004, 3:39am, amandaN wrote:| I've had clusters for 14 yrs, past 3 have been chronic. They have been under control with Topomax,neurontin and zoloft (took along time, and lots of diff drugs to find what works) till now...6 wks ago shadows started, then went out of control, having them every 2 hrs during the night, and couple in the day. I just found out I'am pregnant (headaches went away with my 1st pregnancy right away , not this one, I think they are getting worse and I am not suppose to take any meds, I hate to say this, but for the 1st time they are stronger than me.. |
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Sweetheart....not even knowing you I can say this to you
BULLSHIT!
I'm going to tell you some things...take it or leave it...know that everything I'll type is from the heart...and I love you....
Number One.
NEVER LET THE BEAST THINK FOR A SECOND HE IS STRONGER!!!!!!!!!!!!!
If you do...he will be.
You will be AMAZED at what the body can, and will do if it has too....
Nine months? Hahaha (I laugh at the deamon)
Sweetheart....look at this way...you have a time line...
You know when this self-imposed lack of medication for his ass will stop!
....let him kick your butt for awhile
But....after you have that next child...kick his butt right back...and do it with a new little buddy to help you!
Why do I say that you can do it?
Because I have been (and it looks like will continue to) living without access to meds or even O2 now for two months, and it looks like I'll be doing this for at least two more years, if not longer!
Shit...I'm in the freakin TROPICS in a third world country to boot! for christ sake...talk about tempting the deamon! I can not even get the blessing of Air Conditioning or even ICE !!!!!!
He has started to kick my butt HARD everyday. I've been chronic for something like 20 some years now...
If I can do it....and I'm not looking forward to as nice a reward at the end of this stint as you are, then you can too!!!!!
I have been fighting about a Kip level 8 now for a week...it visits at least 4 times a day...my 2:00pm is like clock work!
on Aug 24th, 2004, 3:39am, amandaN wrote:
My family is telling me my health needs to come 1st and sadly the baby 2nd..but how do you admit that to yourself?
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you don't!
I may be talking WAY out of turn here....forgive me if I am...
I do not have children...would give up more than you could ever know to have a child....is the one thing in life I have not yet accomplished that I wish to....
Your health needs come first??????????
What? Is taking meds. going to suddenly make you well? cure you????
No.
Is ending this new babies life going to change things other than give you a few months less pain?
nope...
So..I really don't see how they can tell you that your HEALTH comes first.....because with or without this child...you're still going to be the same...still have CH's...
The only difference is you'll be able to take meds for it....
Shit.....big deal.....
Sorry to spout off like that.....
Want to know the real kicker here? I'm not even some right-to-life freak...hell..I SUPPORT abortion rights!!!!!!!
But if the ONLY reason is because it will make living with the deamon easier for a small time, I just can't see it...
I guess it is because I am having to do what you would get to keep a child to do...go without medication, and I just can't see it....
It's really up to you....but I can promise you one thing.
The body is a HELL of a machine...it can take more shit than you could EVER imagine throwing at it...and bounce right back...
The deamon won't win...if you don't want it to....
All you have to do sweetheart is say my little chat over and over...
"Even this headach is going to stop soon"
They all do......
Hang in there....do what you feel best...and write me, I'll support ANYTHING you feel you must do to deal......
I'm on your side....
BUT
If you are looking for help to do what it sounds like you really want to do...then know that it IS possible to live med free and live with CH's.....
9 months????
I spit at you deamon...come give me her headachs...leave her along....hell, you ain't beat me yet.,
Give me her headachs for the next nine months...I'll take both her's AND mine.......
Hang in there sweetheartt..if I could I'd take your deamon for the next nine months for you and house him in my head with my own deamon...maybe they could learn some new tunes together....but alas I can't 
..kick that deamon bastard in his teeth for me!!
Hang tuff....*I* know you can...you need to know for yourslef that you can also!
Think of it this way...you've done it so far!
Peace.....
ExPat_Jac
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| « Last Edit: Aug 24th, 2004, 5:23am by ExPat_jac » |
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synergy
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Re: sadest cluster day
« Reply #3 on: Aug 24th, 2004, 9:31am » |
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Hiya hun - sorry to hear that you are in this situation - just like wendy said - this is your decision, not your familys. My partner has been chronic for 3 years and not used meds that help - you are stronger then the neast and the child growing inside you will give you double the strength to fight it.
Good luck and keep posting - luv sarah and marc xx
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crazy_mj
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Re: sadest cluster day
« Reply #4 on: Aug 24th, 2004, 11:24am » |
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Congrats and sympathy!!
Pregnancy is what triggered my clusters to begin in the first place. We want to have a second, but I fear what it would be like to be without my meds for nine months, and what it will do to the clusters after!
My only thoughts are maybe if pregnancy is the cause maybe it will be the solution the next time around. I don't know! Hope you find the best solution for yourself, and you will be in my thoughts!
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amandaN
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Re: sadest cluster day
« Reply #5 on: Aug 24th, 2004, 11:41am » |
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Thank you all for your support (and ass kicking , It is amazing how these things can just tear you down, the added pregnancy hormones dont help either, HA! Maybe I will try O2 again, cant hurt. Now I fear the drugs I have taken will effect the baby (amerge, imitrex), the OB said he would send me to a pregnancy genitic specialist. Anyway, Thanks again. AmandaN
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pubgirl
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Amanda
Just a further add on. Do make sure you get the right kit for the 02 and use it quickly at a high flow rate at the first sign of any pain. Also try it several times as there are always rogue attacks where it doesn't work.
You need a minimum 12litres a minute, some of use at a higher flow rate, and you must have a non-rebreather mask.
If you don't have this setup, it almost definitely won't work
Hope this helps
Please keep us posted on how things go or I shall worry
Wendy
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ExPat_jac
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Re: sadest cluster day
« Reply #7 on: Aug 24th, 2004, 10:21pm » |
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on Aug 24th, 2004, 11:41am, amandaN wrote:| Thank you all for your support (and ass kicking |
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no  Please don 't think of it that way
on Aug 24th, 2004, 11:41am, amandaN wrote:
It is amazing how these things can just tear you down, the added pregnancy hormones dont help either, HA!
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I could not *begin* to imagine the added headach (pardon the pun) that the extra hormonal load is causing!
on Aug 24th, 2004, 11:41am, amandaN wrote:
Maybe I will try O2 again, cant hurt. Now I fear the drugs I have taken will effect the baby (amerge, imitrex), the OB said he would send me to a pregnancy genitic specialist. Anyway, Thanks again. AmandaN |
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Amanda...I think you'll find that you and the little one will be fine...even with the use of amerge and imitrex...as I said, the body's pretty good at taking things
Sumatriptan is an agonist ( a drug that binds to the receptor and stimulates the receptor's function) for a vascular 5-hydroxytryptamine1 receptor subtype (probably a member of the 5-HT1D family)
The elimination half-life of sumatriptan is approximately 2.5 hours. (It leaves the body pretty cleanly...)
Put simply...I think your going to be fine with the triptan usage...
As for the amerge...I'm not as familure with it as I am with the Imitrex so I did do a little quick research, and it appears to be another of the serotonin receptor agonist...which would lead me to think that since you have stopped these you should not have a concern...
hahaha you should see what the adverage person in *this* country is exposed to, while pumping out children like PEZ dispensers...and they are all for the most part beautiful, healthy babies...so I'd not fret too much...
Besides..I beleive that the deamon thrives of worry....so lets not feed him anymore than we need to ok?
Hang in there and keep us posted!
(and I'll want pictures in about 8 or 9 months ok?)
Peace
ExPat_Jac
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BobG
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Re: sadest cluster day
« Reply #8 on: Aug 24th, 2004, 10:39pm » |
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Damn, I hate news like this..............excuse me a moment..........I have something in my eyes and can't see the screen.
Ok, I'm back.
Like the others said, it is your choice, your decision about the baby. Not the family's or friends or this message board.
Please, please try the O2 again. Non-rebreather mask 12-15LPM flow. Hit it early, as soon as you feel the first twinge of an attack.
And something to think about..........a brand new baby, first day, just born, sign it up as an OUCH member. After all it did go through the attacks with you. My grandson was, at one time the youngest OUCH member at 2 years old. Then Elaine's grandson was a member at age hmmmm...2 days?
Best wishes on whatever you decide. Please stick around and let us know.
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Kris_in_SJ
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Re: sadest cluster day
« Reply #9 on: Aug 25th, 2004, 8:59pm » |
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Hi,
My heart swells and hurts for you at the same time.
The answer is never easy ... you'll have to look deep into your heart ... only you can decide (not your family).
I can only tell you that my 20 year old daughter (though she can many times be a total pain in the ass) is the greatest joy of my life. I could fight the beast many times over and for many years just for her.
Also, there's much literature showing that women with clusters go into remission during pregnancy. Just think ... you could wake up one morning at the beginning of your fourth month totally PF!
I would advise trying the 02 again at the prescribed flow and using the method recommended above before doing anything else (or making any life-changing decisions).
You'll find support here whatever your decision ... just make sure the decision is yours!
Sending many hugs and PF vibes to you!!
Kris
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thebbz
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Re: sadest cluster day
« Reply #10 on: Aug 25th, 2004, 9:21pm » |
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Non Rebreather...Try the O2 again please... My doc mixed up all kinds of triptans they are of the same family they just move a couple of molucules around Glaxco's patent. Don't give the rotten beast a chance. Keep on fightin.
My wife and I will send prayers and Vibes 
thebbz
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BobG
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Re: sadest cluster day
« Reply #11 on: Aug 27th, 2004, 3:01pm » |
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Amanda, are you out there? Please check in.
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marfanoidus
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Re: sadest cluster day
« Reply #12 on: Sep 8th, 2004, 2:48pm » |
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Off topic a bit here: for mothers with CHs: which hurts worse, childbirth or CH???
And I better not hear from non-mother presuming to know the answer!
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amandaN
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Re: sadest cluster day
« Reply #13 on: Sep 10th, 2004, 2:20am » |
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Hi all! To answer that last question about childbirth or CH?? I would give birth over & over again (yes, I have a child I guess I should add it was a very easy birth though, Ha. I made the desision to terminate the pregnancy. Its something I will have to live with forever, My neuro. put me back on Meds, Prednisone and verapimil, Have had some headaches, nothing like they were. Now the wondering..if i get pregnant, what will happen, 1st pregnancy, no headaches, 2nd one..all hell breaks loose??? Then the horrible dread of"what if I pass this on to my children?" I'm sorry, the "its not hereditary is BS". My father has had them for 40 yrs, dont tell me coincidence. I posted my saddest day, and thank you for your support! sorry if my desision has offended anyone. (I did try the O2, it helped only once or twice, if I caught it real quick ) Amanda
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clarence
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Re: sadest cluster day
« Reply #14 on: Sep 10th, 2004, 4:20am » |
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Amanda,
Sorry that you were put in such horrible position in the first place. I can't even imagine what you must have been and even still are going through. I pray that your headaches improve, and that you find some relief. Know that you have love and support here.
Casey
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pubgirl
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Amanda
Thank you for coming back and posting. It was brave and I thank you as I have been thinking of you and worrying.
Your decision is your decision. No-one here has a right to comment or judge. If they are offended, they can take their offence elsewhere.
You need to concentrate on yourself now, getting an abortive that works for you and enjoying life with your family.
Getting pregnant again is not something to think about now. Get strong first, then think about it. Sadly, one of the things to consider at that point (and not before!) is that the strong chance is that this condition does have a hereditary element. BUT it isn't genes alone, so your child could be Ch free for life.
Sending you the biggest cyberhug ever and wishing you happier and more pain free time ahead with your family
Wendy
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Ruth
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Re: sadest cluster day
« Reply #16 on: Sep 10th, 2004, 11:41am » |
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I just want you to no, I feel very sad for you and I hope you are doing better, I had no cluster headaches with my first pregnancy, but some at the begining of my second, they were bad. At that time I took no meds and of course they went away for the rest of the 9 months. So maybe that is what will happen for you. Wishing you the best!
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zline
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Re: sadest cluster day
« Reply #17 on: Sep 22nd, 2004, 7:56pm » |
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what ever decision you make will be the right one, i suffer like a dog but only 3 months every 3 years.
last night i wished i was dead.
only we know how much these hurt.
god bless.
zline
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EmpressJMB
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Re: sadest cluster day
« Reply #18 on: Sep 25th, 2004, 10:00am » |
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Hi Amanda! Sorry to hear of your situation! I wanted to tell you what happened to me. I was chronic for years and was having THE WORST pain I ever experienced when I found out I was pregnant. I was on Sansert and O2 at the the time. This was 10 years ago. I was faced with the same decision. I gave up the Sansert and about 2 months later the cycle ended. 7 months after that, I had a beautiful, healthy boy! 9 months after that, I found I was pregnant again. I went through that one with 0 HA's. I was PF for 5 years before getting a short hit (a few days). So, now I have two great boys, 9 & 10. The first son was conceived while I was taking Sansert and he is the brightest, best behaved kid in the world! The son who was conceived while taking nothing has learning disabilities and ADD. My point is, it's all a crap shoot! I had also seen a genetic consultant with the first child and they just said they "didn't think" it would be a problem. I don't think they really knew. I nursed both babies by the way. In the past 10 years, I had 2 short cycles. Kip 6. Bearable. The beast returned full force (kip 8-10) 5 weeks ago but with the help of an excellent neuro, and the support of knowing I can turn to this board, I've been pf 15 days now. I wish you the best of luck in your decision as well as your HA's. Hang in there! It will be o.k. Janet
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alleyoop
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Re: sadest cluster day
« Reply #19 on: Sep 26th, 2004, 1:15am » |
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Too many people post without reading the entire string first!
Amanda (BTW, my youngest daughter's name), I just read through this string and am moved beyond words. I can't and never will be able to imagine how tough your decision was. I'm sure it will be almost impossible for you not to second guess yourself. I'm also sure that if you prayed about it and thought it through, that you made the right decision and should be at peace with yourself.
Please stick around and keep posting. You will not find a better support group anywhere. Welcome! I'm looking forward to hearing from you.
PFNAD,
..............................alley
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Renee
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Re: sadest cluster day
« Reply #20 on: Sep 26th, 2004, 7:57am » |
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ditto alley,
My thoughts and prayers go out to you AmandaN. I hope you find peace and pain relief.
I am starting o2 again, after a 6 month break from it, to see if it will shake up the beast.
renee
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23 years of battling the beast, 9 years chronic......uneducated docs/nurses make me irate.
The fungus among us is for real!
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