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Topic: Ladies. . .I need your help! (Read 441 times) |
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Heatherg
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Ladies. . .I need your help!
« on: Aug 7th, 2005, 4:27pm » |
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Hi to all! I am new to this board, but new to CH. I am 29, but have had episodes for the last 12 years. I had years of mis-dianosis because I was a teen age girl, and not a man. Imatrix and Prednisone is the coctail of choice.
My cycle used to be every 2 years, but recently it has decided to visit more often. I now expect to have an episode every 18 months. This is where it gets tricky, I had my first child 8 months ago. (And love being a mommy!) I suspect that going off birth control and different stressers might have contriubed to my episode starting sooner.
Next month I am coming upon my 18 month marker. I never look forward to the visit, but I am nervous because I breastfeed my baby because we have found that she has allergies to a lot of foods. I am so nervous about not being able to feed her because I will need to be on meds.
I read somewhere where pregnant women who suffer from clusters normally don't have episodes, is the same for breastfeeding women?
So I would love to hear from someone who has had experience with:
1. CH and birthcontrol. . . do you find one affects the other?
2. CH and breastfeeding?
3. Ways to deal with an infant and CH.
Sorry for the length, and thank you in advance for taking time to read this!
**Heather** 
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| « Last Edit: Aug 8th, 2005, 5:40pm by Heatherg » |
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E-Double
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Re: Ladies. . .I need your help!
« Reply #1 on: Aug 7th, 2005, 5:05pm » |
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Hi Heather,
I am not a woman however I can tell you that unfortunately there have been women here that have remained in cycle or had cycles begin while preggers.
There are also women that have had reprieve.
Like everything else in life....we are all different.
As far as dealing with an infant.....You will do what you have to do!
If worried about meds and breastfeeding.....are you talking about prventatives?? You mentioned the use of steroids but no preventative medication just the abortive.
You can try using Oxygen instead of the imitrex if worried. Then you will not be taking any risks.
Be well and don't stress too much!
Eric
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LeLimey
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Re: Ladies. . .I need your help!
« Reply #2 on: Aug 7th, 2005, 5:19pm » |
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Hi Heather,
As Eric says O2 would be my first suggestion for you whether you decide to continue with brest feeding or not. Imitrex has a relatively short half life so it may be worth talking with your doctor and paediatrician as to how this would affect breast feeding.
Maybe you could start expressing milk and freezing it? I'm not sure how long it lasts frozen but even if you froze it and used it up now and then re froze a fresher supply it might be a way to go. At 8 months old you will be weaning her round about now so she will be less dependent on you alone anyway and more receptive to a bottle or feeder cup so it might be helpful for you in more ways than one!
Don't let this spoil such a wonderful time for you, if you are going to go into cycle its going to happen but don't waste time fretting.. well done for getting your abortives thought out though so you can be on top of it!
Let us know how you are doing okay?
Helen
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lionsound
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Re: Ladies. . .I need your help!
« Reply #3 on: Aug 7th, 2005, 8:35pm » |
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Hi Heather !
I'm about 20 weeks pregnant and I do have two older kids and I'm one of the lucky duckies that Eric referred to that still gets CH while pregnant. My head didn't hurt this bad the last two times that I can remember, so it even varies from one pregnancy to the next.
I was not on meds while I breast fed the last two times and I guess I'll just have to see what happens this time.( if you find out anything good , I'd love to hear it )
my suggestion would be to talk to your doctors NOW and figure out a plan just in case you need it. Ask the pediatrician or OB what is okay to take so you'll know in advance. I was told a big fat NO to triptans, like imitrex. I can and do use Oxygen. Ask your docs about it, read this:
http://www.maplefallswebdesign.com/misc/oxygen/oxygen.htm
I am sure that you are and will be a great mommy regardless of CH. Your daughter loves you! it will work out.
I hope that you continue to be PainFree!!!
-lionsound
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bnfreeman
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Re: Ladies. . .I need your help!
« Reply #4 on: Aug 7th, 2005, 8:54pm » |
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Hi Heather,
I was pregnant around March. Before I knew I was pregnant things really amped up. 10's around the clock for days in a row. I used imitrex until I found out. Imitrex is a BIG NO NO! During my time while getting hit so hard I was in the ER alot. Usually just filling me up with Dilauded and Morphine.
When I found out I was pregnant I stopped the trex. But went to the ER a few times. My doc prescribed demerol for pain because it is relatively safe, but I don't know about breast feeding.
I heard Verapamil was made for pregnant moms whos blood pressure becomes high. Don't quote me. The sad news is I lost my baby. It did not grow past 6 weeks. And though they told me it wasn't because of the medicine, I believe it was. Birth control had no effect on my clusters.
I have a 2 year old and it's hard. When I get hit and by myself I get him something to do and put in a movie. When he sees me with the O2 or ice he knows "I'm sick" and he sits quietly with me.
Hope this helps. PFDAN
Brandi
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brainfreeze
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Re: Ladies. . .I need your help!
« Reply #5 on: Aug 8th, 2005, 9:08am » |
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Hi, I too have experienced birth control and pregnancy with CH and have found that during pregnancy and all the while I breastfed, no CH. It wasn't until afterwards did they start back up. I have never had a correlation to my menstral cycles and CH and believe that's because everything is altered with birth control methods. My ch's are episodic but have never followed a specific pattern (like every 18 mos). They are once a year and I never know which month they'll show up. I hope you find the answer that you are looking for. I'll send you good vibes that no CH for you while you are breastfeeding. That's an additional pressure you don't need right now. 
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Kris_in_SJ
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Re: Ladies. . .I need your help!
« Reply #6 on: Aug 8th, 2005, 6:54pm » |
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Hi Heather,
Welcome to the family.
It would be helpful to have some input here from a medical professional. I used to be, but I've forgotten more than I remember. *smile*
I vote for a plan of attack with both your neuro and pediatrician involved. Oxygen to abort - it works and won't hurt the little one. I would certainly think that Prednisone is OUT! However, Verapamil is a very safe drug providing your blood pressure isn't too low and I wouldn't think it would hurt the baby. Most importantly, have a plan but don't let the worry take over. You may very well pass this cycle right on by.
Never had clusters until the age of 42, so never had to deal with this myself. Please keep us informed. It will be a great help to other women with similar questions.
Many hugs,
Kris
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Heatherg
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Re: Ladies. . .I need your help!
« Reply #7 on: Aug 10th, 2005, 12:14pm » |
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Thanks to everyone! I am going to try to keep up a good attitude and hope for the best!
It's nice to know there is support out there, and I will keep y'all updated!
Thanks,
Heather
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yikes-another-one
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Re: Ladies. . .I need your help!
« Reply #8 on: Aug 17th, 2005, 6:30pm » |
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I think the worst part will be when your energy runs out.
I work at a daycare, with 10 one-year olds.
You know, the noise and lights cannot make the pain
any worse that it is going to be....
so let 'em scream, or laugh, or cry, or rave....
I just weather the storms inside my head....
at times, they sense the trouble I am having and
all 10 will play with blocks and read books for an hour
or so....as soon as the pain disappears,
they want to get back on schedule and beg for musical
drums and cymbols....wink.
At other times, You just wanna scream and cry yourself...
but the pain does pass, thank god.
Talk yourself through the episodes and pray for
an easy cycle....maybe God will have lots of mercy
and let you skip by with just a level 4 here and there...
hey, it's worth a prayer or two....
You are in my thoughts and prayers....
Take great care of yourself,
and your baby will be fine.
They adapt to us, and we show them how to handle
the world, pain is the sad part, but by letting them
watch you handle it ... you show them it is nothing
to fear...and something they will survive.
I hope you house is filled with laughter and love!
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cher1
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Re: Ladies. . .I need your help!
« Reply #9 on: Aug 18th, 2005, 6:13pm » |
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hi there,
my experience was, no clusters during pregnancy, but when i was breast feeding, i was having attacks. In the end i did what was best for me and my baby, I took the meds and put baby on the bottle. He was getting all the goodness he needed from the formula and i wasnt in pain, so feeding times where nice and calm, just how they should be.
god bless
cher x
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docblondie
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Re: Ladies. . .I need your help!
« Reply #10 on: Aug 19th, 2005, 11:28pm » |
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Heather,
I am 37 and have been on depo provera for 10 years. I ahve never been pregnant- I have had clusters for 17 years. Since going on depo, I have not had any changes in my cycles of headaches- no difference- I can't speak to other kinds of birth control, like the pill, and its varieties, but depo has not had an impact on my cycles.
Sorry I cant help more- Have you ever tried oxygen to abort a headache rather than imitrex or other meds? THat you can take safely while pregnant, I think, and while breast feeding. Get an H-Tank of O2 and take 8-10 litres per minute for 15 mins. SHould stop the HA.
Use a face mask, not a cannula.
Best of luck!
~Christine
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