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        Cluster Headache Help and Support >> Cluster Headache Specific >> Question for the women
        
(Message started by: Bethany1 on Oct 16^th, 2006, 10:55am)

Title: Question for the women
Post by Bethany1 on Oct 16^th, 2006, 10:55am

ok, so I had my son 8 1/2 months ago. My body has gone through some real wacked out things, and I'm not back to my old self. Who knows if I ever will be. Anyways, during my preganancy, the first tri-mester was the hardest with all the hits, then they suddenly went away (sorry rori, I know you had a rough go with yours) After I had him in the hospital 2 days later, I started getting hit again. I thought it might have been the meds I was on, so I stopped them (percs). Now, sporatically I am getting hit. I used to be like clockwork, 2 cycles a year, spring and fall. Maybe I'm in cycle, I dont know, I dont feel like I am. I dunno. Anyone experience this after giving birth? I should add Im taking verapamil. Thanks-
Beth

Title: Re: Question for the women
Post by HeadhurtinMama on Oct 16^th, 2006, 12:48pm

Hi Beth,
Don't know how much help I will be, but I will give it a shot. I am chronic and my first trimesters weren't any worse than any other day of the week before I got pregnant because at that time, I hadn't been diagnosed yet and wasn't on any preventatives other than Celebrex. My second and third trimesters were days of bliss other than the swollen ankles ;;D Right after I had my first son, the headaches came back right away, within days. They came back a little slower after my second and I think that may have been because I was nursing him and it was due to hormone fluctuations not being quite as wild all at once? Unfortunately for me, my HA are continuing to morph and grow as time goes on, but mine have done that since I developed them. I don't know what to tell you about being in cycle, maybe you are since it is the season?

Bridget

Title: Re: Question for the women
Post by TxBasslady on Oct 16^th, 2006, 3:42pm

Bethany,

Is this the normal time for your fall cycle?
Have you had the sporadic hits ever since you left the hospital?

I don't have a cycle....my CH is sporadic, and has been for a while.

I'm wondering...are the hits you get as intensive as before...have they changed any?

I'm not much of a help ::) LOL about CH and birth.

My last child was born in 1976... :o

Love you,

Jean

Title: Re: Question for the women
Post by Bethany1 on Oct 16^th, 2006, 6:17pm

on 10/16/06 at 15:42:02, TxBasslady wrote:

hay Jean, ya its the normal time, but I have been sporatic since giving birth... maybe thats what happened, I just changed. thank you for the reply... and also to you Bridget....

Title: Re: Question for the women
Post by Tata on Oct 17^th, 2006, 12:11am

Hi Beth--
Sorry to hear you're having a bad time--it's really hard to go through this with a baby. I'm only episodic--1 hit a year so far usually lasting for 1 1/2 -3 months, usually in the fall, but they have come in the spring and 1 year in the winter. I never got hit while I was pregnant--I always assumed it was because of the hormones, but then I read of women getting them during pregnancy. My first son was born in August, and I didn't get any until the fall of the following year. My daughter was born in May, and I got hit hard in the fall--the worst episode ever. My 2nd son was born in April and I didn't get any until January--just when I thought I was safe for the year. My little girl was just born last November, and they started back up a few weeks ago. It does seem, for me anyway, that somehow the hormonal effects of pregnancy and breast-feeding stave off the HA's. I nursed all 4, and it seems that once they were getting supplemental food and my period returned that the HA's would show back up, right on schedule. Maybe you are on schedule and pregnancy doesn't affect your spring/ fall cycle? If you had the baby in Feb, and you had HA's in your first trimester--wouldn't that have been in May and count as your spring cycle? Or is it usually earlier in the spring than that? There has got to be some hormonal thing that affects these HA's, for me , anyway. But why not for all women? We all have the same pregnancy hormone, so you would think.....arghhh!! Take care Beth--hang in there and enjoy your little guy. Sorry I wasn't more help. Tata

Title: Re: Question for the women
Post by Polly_C on Oct 21^st, 2006, 6:30am

Hi Beth

Im a newly diagnosed CH (episodic and currently in month 2 of cycle) aged 34, living in Leeds, Northern England. Im 33 weeks pregnant and started having the worst attacks EVER in my 2nd trimester and they've been worsening ever since. as if pregnancy wasnt hard enough! Im on O2 at the moment and may end up having to use Verapamil or Sumatriptan after the birth if the cycle continues. I dont know what to expect as my CH has also been undiagnosed, untreated, sporadic and unpredictable over the years. I didnt even know about CH until this year so didnt realise that I was a sufferer and could get help - Im beginning to realise that this is a tragically common experience. So Im wondering what this means for me and the baby. Im anxious about the possiblity of having an attack during labour and not being able to cope with a new baby and attacks simlutaneously - this prospect really scares me. I'll be really disappointed if I have to sacrfice breastfeeding my baby in order to take preventative meds but do I really have a choice? I hate this condition and feel really bitter about how it's dominating my life and affecting my choices about how I raise my child. trying to stay postive and looking forward to meeting my son but I finding it really hard not to get depressed about all this :'(

any tips or advice from another CH mum would be very welcome.

Polly

Title: Re: Question for the women
Post by LeLimey on Oct 21^st, 2006, 6:50am

Hi Polly,
I'm not too far from you, I'm in Notts. Lets see what we can do to help you okay?!
What are you using to abort attacks currently? As for breastfeeding afterwards, I've heard Rori, Lionsound, another ch mum talk about "pumping and dumping" so that could well be an option for you too.
If you want to talk or anything I'm more than happy to pm you my phone number or to phone you, just say the word ok?!
We'll find ways of helping you with this, we'll work tgether and we'll get it done (and no, I'm not bob the flippin' builder! LOL)
Hang in there Polly
Helen

Title: Re: Question for the women
Post by Polly_C on Oct 21^st, 2006, 7:05am

Hi Helen

Thanks for replying. yes you're just down the road from me:D it's such a relief to hear from other CH mums. I thought I was some sort of freak as everyone Ive spoken to so far keeps saying 'Oh, you're pregnant and in a CH cycle - that's unusual as most CHers find their's breaks during pregnancy....' AAARGGHHH!!!! :-[ I dont want to hear this do I! Im so glad Im not alone and have people who understand what Im going through to finally talk to.

Im currently coping with attacks using O2 - it seems to be working more effectively the more I get used to it - it's all in the timing. Iv also got an extremely supportive husband who tries his best - though all he can do is lug tanks of 02 around the house to whereever I happen to be holed up during attacks. As for breastfeeding - yes, Id thought about expressing (I'll need the odd day off after all) but wont the meds be in my system anyway and so whatever I express will be in the milk? Im interested to hear that other mums found that they didnt get attacks whilst they were breastfeeding but that they returned when they stopped - this could just be the normal run of their cycle I suppose. I wish this damned thing was more oredictable. that's the worst thing. not knowing what's round the corner.

Thanks so much for the offer of contact. please call whenever you like. leave a message if Im not there and I'll call you back. it's always good to talk to other CHers.

Best
Pol :)

Title: Re: Question for the women
Post by LeLimey on Oct 21^st, 2006, 7:07am

Hi Polly, go back and edit your post and cut your number out.. I've got it now and I'll call you!
Helen

Title: Re: Question for the women
Post by HeadhurtinMama on Oct 21^st, 2006, 8:32am

Polly, I was on verapamil, which is a preventative, while nursing. My neuro wasn't really thrilled about it, but her only source of information was the Physicians Desk Reference. My pediatrician cleared it since there are several other sources that said that it was fine. I can find those sources for you if you would like.

The only othere thing was that I needed to wait 4 hours after taking Imitrex to breastfeed to make sure that it was metabolized from the milk. The best resource that I found was called Medication and Mothers Milk by Dr Thomas Hale.

Bridget

Title: Re: Question for the women
Post by Bethany1 on Oct 21^st, 2006, 9:09am

Oh Polly! Well, first off, congratulations! I remember when I first found out I was preggers, I was so scared. I do have to tell you that Lionsound aka Rori helped me out A LOT. She was pregnant at the same time and we were both getting hit. Mine tapered off when I hit the second tri-mester. I remember Rori using the o2 and talking to my doc about Stadol. When I had my son I started nursing as well, it only lasted 2 weeks. Rori is much stronger than me! I got hit the second day after my son was born, then when I got home combined w/the hormones, stiches (ouchy), lack of sleep, and headaches I could only last for 2 weeks until I gave in and took the imitrex. I did try the pump and dump but was too nervous about it. Helen is a great person and very knowledgable, also I hope that Rori sees this post and can give you some good information as well. She truly was a lifesaver for me. Please pm me if I can be of any help/support to you. All my best-

Beth

Title: Re: Question for the women
Post by Polly_C on Oct 21^st, 2006, 10:00am

Hi Beth

Thanks. Im really looking forward to meeting my son and feel excited, nervous - all the usual feelings about the birth - but anxious too CH attacks and labour, not good.....

Ive been in touch with Helen today after she saw my post and she's given me lots of support and info. it's great to hear that CHers have managed the attacks with meds AND breastfed too - lots of different and positive experiences which are good to hear about - gives me hope. Helen did suggest I should speak to Rori so Im really hoping she sees my post - though I think Helen was going to try and put us in touch. It sounds like she and I could share some horrors as Ive been in cycle for 8 weeks now (since around 25 weeks into my pregnancy) and only had O2 for the last 2 weeks - fortunately my baby doesnt appear to have been affected or distressed in any way by the attacks but at times it has been almost unbearable for me all the same.

Great to finally have some company from people who know what it's like and can really help.

Reading your posts and receiving your words of support/advice and tips makes it all the more bearable.

Thankyou!

Pol ;;D

Title: Re: Question for the women
Post by Polly_C on Oct 21^st, 2006, 10:01am

on 10/21/06 at 08:32:46, HeadhurtinMama wrote:

Hi Bridget
Many thanks for that - will check it out.
Pol :)

Title: Re: Question for the women
Post by lionsound on Oct 23^rd, 2006, 10:08pm

Hi Polly!
I'm sorry it took me a bit to reply, but i was away for the weekend.

Oxygen is my friend :) I used it during pregnancy and now after while I'm nursing. My third son is almost 10 months old.

Polly, I will send you a well thought out PM with more details tomorrow.....feel free to send me one before then if you need.

Keep your eye on that baby prize ....you can do it!

-Rori

Title: Re: Question for the women
Post by Polly_C on Oct 24^th, 2006, 4:37am

Hi Rori

No worries. Thanks for the contact.

Im so encouraged to hear that you've managed on O2. Ive only been using it myself for the past 3 weeks and am also finding it very effective - Im getting up to 5 attacks a day some days and so its already proved itself to be a GREAT friend. I feel so much more confident about labour now Ive got the O2.

It's after the birth that Im still a bit anxious about. If Im still in cycle Im wondering how Im going to manage with a new baby AND aborting attacks - even though the O2 significantly reduces them down to 20 mins it's still that extra thing to have to deal with. My specialist doesnt seem to think that there's any triptan I could safely take whilst breastfeeding - she's thinking of Sumatriptan or Zolmitriptan as the most suitable acute treatment.

What did you take when you were pumping and dumping and could you explain a bit more about it? I hope you dont mind me asking - Helen mentioned this was something you did that enabled you to continue breastfeeding whilst taking a preventative.

It's really good to have contact with you.

Pol :)