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TheDuchess

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Reply with quote  #1 
Hello! My name is Molly. I am 32 years old and have had CVS for 4 years, only diagnosed 6 months ago. My doctor put me on Noritriptyline and Prilosec which were working great! I went 5 months with no episodes and when my prodrome phase started, I was usually able to abort it within 24 hours. Now, my husband and I want to start a family so I talked to my doctors about it and they suggested some med changes for safety. I am now taking Zantac and L-Carnitine to hopefully stave off any episodes while I try and (hopefully) do become pregnant. I was wondering if anyone could give me some advice. I have looked many times through the pregnancy posts and am not finding anything this specific. 

 I have read some articles that say L-Carnitine is not safe while you are pregnant and I was a little curious as to why they don't want me to take CoQ10 also. Most of the reading I have done on this website shows the two working together to prevent episodes. I was just wanting to know what meds other women on here may have taken while pregnant and what if any side effects they feel resulted in them. And any information you have on L-Carnitine while pregnant and its safety. Thank you for taking the time to read my post! 

Best of health to you all!!
Molly

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Molly

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TheDuchess

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Reply with quote  #2 
It's only been a week since I switched meds and I have already had an episode. I use hot baths as it is the only thing that seems to help me. I'm not sure what to do about when I get pregnant and losing my only option for relief in the baths. No one has been able to reply about the meds, but I hope one of you will read this and be able to give me some advice. I hope that it is only taking some time for the L-carnitine to start working for me. So far it seems no different than taking no meds before I was diagnosed. Any help any of you can give me would be greatly appreciated. I am losing hope and starting to wonder if having a family is even going to be possible for me if I am unable to go a week without getting sick.
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Molly

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ginny

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Reply with quote  #3 

I think you have not had a reply about pregnancy and the supplements because no one feels comfortable stating what is and is not okay to take while pregnant.  You must work this out with your doctor, and your doctor might want to consult with one of the CVSA Medical Advisors.

We have had several members of CVSA successfully complete pregnancy.  Some feel much better during pregnancy and others feel much worse.

I know one person who managed to have her CVS under control with diet and the supplements before becoming pregnant in her mid to late thirties.  She had a successful pregnancy with no CVS symptoms.  Her diet was similar to a South Beach or Mediterranean Diet but also Gluten Free.

I do think she was able to use the supplements during pregnancy but I am not positive and she would have had the clearance from her physicians.   She has not been on the message board in a few years.

There are several threads about pregnancy and if you locate any interesting older threads, please bump them back up (just click on reply and simply write "numb" or anything in the reply box then click on Add Reply).  We lose the threads after a few years.

Your future Ob is going to decide what is best for you and your future child.

Good luck.

 


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ginny CVSA Moderator
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TheDuchess

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Reply with quote  #4 
Thank you for your response, Ginny! My GI doctor is the one who made the change to my meds after we discussed my desire to get pregnant. I will try talking to her more and expressing my concerns. I will also need to start looking for an OB who knows about CVS! I am not looking for professional opinions on the medications, I just wanted to talk to someone who has CVS and has been pregnant. I have read many of the posts on here about pregnancy but have honestly not found a lot of information on what helped them make it through episodes during pregnancy. I guess maybe I just need someone to tell me it will be alright and not to give up. I know you can all relate with or without children how hard this illness can be. I often get discouraged and feel like relief is miles away.
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Molly

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Doc

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Reply with quote  #5 
I need answers to the same questions, Duchess. I am on the fence about ever getting pregnant. I think most of my indecision is due to anxiety. Also I'm scared of being sicker in pregnancy. I'm also afraid I'll regret my decision NOT to become pregnant down the road one day. You hear stories of some women doing well, and even better than they usually do. Then again you hear horror stories about months of hospitalizations during pregnancies. I wish I had helpful advice for you. I don't know if I'll ever decide to take the plunge or not. I'm also scared of coming off nortriptyline, and I definitely wouldn't want to take it during pregnancy. That's a personal decision, as I think the research is inconclusive on the saftey of the med during pregnancy.
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Doc

34 year old veterinarian. Adult onset at 25. Some recent flare ups but working through it! Breathe, stretch, relax.
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TheDuchess

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Reply with quote  #6 
Thanks, Doc. It is very scary but I feel like I would regret it if I didn't try. I figure if it doesn't work, I can always go back on the Noritriptyline. I'm just trying my hardest to take it one day at a time. Today is better. (You know how it goes) I don't think I have been on the L-Carnitine long enough to know how well it is working. I will keep you posted and let you know how everything goes if I am able to conceive. Just keep your fingers crossed for me! :-)
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Molly

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Doc

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Reply with quote  #7 
Good luck!!!! I think you are brave and amazing for giving it a shot.

I think I started a thread about this a long time ago. I'll try to find it an bump it up in case there are any helpful responses in it. I hope I can still find it bc my account got discontinued once and I lost access to a lot of my old stuff.......

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Doc

34 year old veterinarian. Adult onset at 25. Some recent flare ups but working through it! Breathe, stretch, relax.
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Doc

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Reply with quote  #8 
Well, turns out I can't find any thread that I started, but there are others that I'm sure you already saw in your search. I wish I could find my older posts from my previous account. I think they might be gone forever, but I'm not sure how that works....
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Doc

34 year old veterinarian. Adult onset at 25. Some recent flare ups but working through it! Breathe, stretch, relax.
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TheDuchess

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Reply with quote  #9 
Thank you so much for checking, Doc. (And for thinking me brave!) I have an appointment with my GP today so I will get her opinion on the meds my GI team put me on and I will go from there! It looks like it will be a good day! Thank you again for your support. It means a lot to me.
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Molly

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TheDuchess

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Reply with quote  #10 

Week 3 of weaning myself off the meds and I ended up with a five day episode, worse than it has been in months. Another ER visit and a whole bag of anti-nausea meds and nothing would touch this episode. I am not sure yet about going back on my meds. I am determined to start a family, but my fiance says my health needs to come first. It's so discouraging to have come so far with this illness and then hit a "road block" like this. The supplements didn't seem to work at all on me. I can't help but wonder if a combination of CoQ10 and L-Carnitine would be a better solution. I'll talk to my doctor soon and keep you call posted. Right now she wants me to abort this episode before we change any meds. I'm starting to feel back to "normal" (as normal as CVS sufferers can be) Surrogacy is expensive, but it might be my only option of having a family some day. Any positive thoughts are welcome! I could use all the help I can get.


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Molly

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MsKeshaBoo

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Reply with quote  #11 
I hope you found something that worked. I have CVS and I have had 3 miscarriages due to my CVS, but I just found out again I am pregnant and I am doing things a lot different this time. I have a post with tips
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Kesha
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TheDuchess

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Reply with quote  #12 
Hello! Sorry it took me so long to respond. I am very sorry to hear of your losses, and I will be praying this time is different for you. I had gone off my meds to get pregnant and we tried for a year with no luck. I had a series of bad episodes after a job transfer due to stress from work. I had to go back on my meds, so we had to stop trying until I can wean myself back off. I have recently transferred back to the Kansas City area and am doing better with my cycles. So I hope to start trying again October of this year. I have no idea what my CVS will do should I get pregnant and miscarriage was always a concern of mine.  I feel like I might be more at risk not only because of my CVS but because I have never been pregnant and am already 33. I would appreciate the link to your post with tips you mentioned. Thank you, and I will be thinking of you and wishing your child(ren) good health!
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Molly

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ginny

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Reply with quote  #13 

One of our members tried to conceive and was finally able with some extra medical intervention.  She delivered a healthy baby a few years ago.  She was able to be prescription medication free for the pregnancy and I think remains off medications a few years later.

Others were posting here during their pregnancies and some did better while pregnant while others had cycles.  Hormones seem to play a role in so many that the pregnancy hormonal change might be helpful-- or not.

I wish you luck and hope that you do have an easy pregnancy going forward.


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ginny CVSA Moderator
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Cassayndra

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Reply with quote  #14 
I also would love to be able to have a child but I am also scared of the pregnancy itself and also a little concerned about possibly passing on this condition to a child. I am so sorry to hear of those who have struggled to conceive. My gyn told me recently in his opinion with the proper team of doctors I could have a healthy pregnancy. One of the things he mentioned was pregnancy does slow gastric emptying so it would be important for me to find a good nutritionist who is experienced in working with gastric emptying problems. Good luck my thoughts are with you.
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Ashleysue7

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Reply with quote  #15 
Hello TheDuchess. Me and my fiance are wanting to get pregnant and have been working with our doctors because I am on nortriptyline as well. How is your process going if I may ask? Have you found something that helps you with episodes?
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