MAV and pregnancy

I was wondering if anyone improved while pregnant. I have struggled with MAV for two years now… Vertigo, nausea, dizziness, tingling in face, floor feels like it is bouncing constantly, feel like I am going to fall, light sensitivity, head and neck pain, positional vertigo, whoozi-headed feeling, full ears, inflamed feeling in ears,… I have these symptoms 24/7… The only change is the severity. I am going to be 34 in sept and my husband and I are thinking about trying to get pregnant. I am very afraid because my symptoms are not under control but I am afraid that if I wait, I will be to old. I have one daughter who wants siblings so badly and I always saw another child in our future. I am afraid either way I go… Not getting pregnant (feel regretful… I love being a mom… I am a stay at home mom) but have also had such bad symptoms and really want my life back. I am afraid that if I got pregnant in wouldn’t be able to handle it or taking care of the baby. But deep down inside do want a baby. Could someone please tell me there experience while pregnant or if any of you have any tips for handling it i would be so appreciative!!! Many Thanks-asteffens98

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Also, has anyone breastfed with MAV? Were symptoms worse, better or the same? Thanks so much-asteffens98

What were your symptoms like with your first pregnancy? I’ve read it can go either way in regards to the mav symptoms. The big question is how is your support system? Do you have people to help you if you need it? I think this factor can be one of the biggest determinants. Are you on meds?

Ellen79,
I did not have this with my first pregnancy. I had very little nausea but did developed high blood pressure due to the position of my daughter… It went away as soon as she was born. My husband is very supportive but works on call every other week for 7 days in a row and can be called out at any time of the night and works during the day… So he would not be able to help as much when it is his call week. I would also want to breastfeed like I did with my daughter and not sure how I would be. My mom lives about an hour away and works every week day but is always here when I need her and here as much as she can. (She just brought us two dozen roses for valentines.)
I am not on any medicine but need to be and my neurologist want me to take nortriptyline… Although he mentioned that some people improve in pregnancy .
When this started it was severe but improved some and I was nursing so I continued and didn’t take meds. In the last year I have gotten worse with more room spinning vertigo and various other symptoms. Some days I can ignore the symptoms and then other days to is very severe and I just try to push through but it is hard. I always saw another baby in our future but am at a crossroads… If I start meds(prescribed nortriptyline) i couldn’t get pregnant for a while and I will be 34 this year… If I wait to long it probably wouldn’t be very wise… My ob/gyn thought I should get pregnant sooner rather than later. I am just hoping if I did, it would get better but who knows…?? I am scared how I would reaction to pregnancy and a c-section but also really want another child. I really hate this. :frowning:

Hi asteffens98

I know exactly how you feel! I have a daughter as well, she’s four, and for the past two Christmases the top thing on her Christmas list was a baby sister. Talk about guilt trip! I desperately want another child - my husband and I always wanted at least two kids, if not more, but this awful illness has made that near impossible. I’m 36, so I feel the pressure. But I know right now with the way the illness affects me and the hours my husband works and the fact that we have no supportive family nearby that I would not be able to handle a newborn right now, as much as I would love one. I remember how hard sleepless nights were when I was well - I can’t imagine how they’d be with this illness!

But there is light at the end of the tunnel! I’m now under the care of Dr S in London (not sure where you live or what Dr you are seeing?). I’ve discussed this in length with him and he knows how important it is to me. He’s hoping I will respond well to the meds he has prescribed and will be able to come off of them in 9-12 months and then start trying. Not exactly optimal in timing as I will then be 37 and my daughter will be 5, but personally with the way this illness is right now I can’t see another way. I just have to be optimistic and do everything he tells me and hope it all works so my life can go on!

That being said, I know for a lot of people the sympoms of MAV/VM go away with pregnancy, so that sounds nice. But then they may come back with a vengance with the hormones once the baby is born, so that worries me greatly, hence why I want to get better first and find what drugs work for me so I can go back on them if needed! While I breastfed the first time around, I will forgo it the second time around if I need to be on meds for this illness.

It’s a really tough decision. I seriously debated going off the meds and trying to get pregnant. Every time I see a commercial with babies I practically or literally start crying. This illness really really really sucks. Its robs us of so much! For me I know this is the right decision, but everyone is different and maybe your pregnancy will fix your illness - who knows? Wouldn’t that be great?!!

Good luck!!

Jennifer

I hope you find an answer to your question. I am also interested. I really want children, I am 35 in a couple of months and not only do I suffer with MAV but both me and my hubby have MS. I think the wise thing would be not for us to have children but there are so many people out there who have Kids who really shouldn’t like the bawling mothers in the street who are smoking etc. It is so hard to think about children and watch them on tele, I feel like the storyline with Katie on Emmerdale. I was hoping that now I have been DX with MAV and the vertigo is not MS that it can only get better and maybe I can reconsider our decition.

It may not seem like an easy thing to hear but you do have 1 child and if you think you will suffer then maybe its not for you? Hope you get some answers to this from other MAV sufferers and I will be reading with interest.

Good luck with whatever you decide xx

Jennifer,
Thank-you for your response. What medicine do you take and at what dose? How is it working? Thanks-asteffens98

Furryclure,
Thank - you for your response. Wow MAV AND MS! That would be so hard… MAV is torture enough! I understand your thinking about not having children. I think what I am really trying to figure out is… Either get on meds for a year or so and then try for a child(I afraid of how age effects fertility, etc) or just try now.??? I am praying about it and I am anxious to see some responses too. Thanks -asteffens98

Jennifer,
Also, thanks so much for your encouragement! It sounds like you have a great plan and I hope that you just keep getting better and better!! -Alissa

Okay, so look, when I post this response-please note that I am a Mom of 2 that I have had naturally. I was struck by MAV after having my kids, and I cannot begin to understand the torment of what you are going through with the decision you are grappling with. I am not offering any advice with this response–as I have no advice. I went through similar thoughts and concerns with both of my pregnancies due to other factors, and thankfully all worked out well. It is a completely personal decision that you will make on your own–and whatever decision you make will be the right one for you–trust in that.

I did want to make one comment though. We often think that there is but one way to become parents. And I’m reading many situations in this thread where it may be very VERY difficult to become parents “naturally” due to the biological triggers that hormone fluxuations and stress would put on the body throughout the pregnancy and after. Don’t forget how many babies and children are out there looking for parents to love them–who have already been brought into this world, or are about to enter this world, without someone to support them as you are already supporting the children you may or may not choose to have. Just don’t forget that pregnancy is not the only path to motherhood. . .

I have had MAV for 4 years now and i am not on medication, i suffer with it’s symptoms everyday.
Well in november i became mummy to my identical twin girls! Please do not let this illness stop you following your dreams ladies, i know everyone gets MAV to different degrees but sometimes you just have to bite the bullet and things may not be as bad as you think.
I’m not saying it’s easy, far from it, the lack of sleep etc does not help but i really feel it has been worth it, my daughters are a real blessing and i love them so much.

For information, everyones experiences are different i think:

I found that first tri i felt much worse, severe morning sickness with twins made me feel awful and the dizziness was increased.
2nd tri i felt much better after 16 weeks, the sickness went and the dizziness went back to baseline.
Most of 3rd tri i was the same but after 34 weekish i started feeling a bit dizzier.
Surprisingly after birth and whilst breastfeeding/expressing my symptoms did not get worse.
Recently since giving up breastfeeding my symptoms have become worse again but i am hoping they will settle once my hormones settle.

Good luck in whatever you decide, the way i look at it, MAV can have better and worse times whatever, you may as well do what you want to do and just take a day at a time, that said, having some support is important too :slight_smile:

Deethedizzy,
Congratulations on your girls! and thank-you so much for your encouragement! I really do want to have another child but have been so afraid. My mom? And I talked today and she said if I decided to get pregnant she would move here to help me. (She lives an hour away right now) She is a nurse and can work 2-3 days a week if she wants and my husband is very supportive… He does work a lot though when it is his on call week but he is a wonderful Dad and husband. My daughter is four and would also be quite helpful I think and she wants siblings so badly. I just hope that things improve if I do get pregnant… It can be so hard now.
Thank-you for sharing your experience! And congratulations again on your little girls! -asteffens98

Hi asteffans98

That’s great if your mom is willing to help you out! I wish I had supportive family around. I’m American, but I live in the UK (my husband is British), so I envy you that!

It’s such a tough decision. The reason I decided to postpone for awhile and give the drugs/diet/lifestyle mods a year to see how everything goes is because I can’t function without sleep! It’s awful, I know, but my daughter fell out of bed one night when my husband was still at work and I literally had to crawl out of bed to get her and calm her down and get her back into bed. The dizzies were so bad. That scared me so much and made me realise that I couldn’t handle waking every two hours to feed/change a newborn. Maybe the hormones of pregnancy would settle things down, but personally, I’m to scared to risk it right now.

But I refuse to give up my dream of another child - fingers crossed we’ll both get our wishes and add to our families and get healthy as well!

Best wishes!

I hope you work out what is best for you and you do get to do what you really want to do. Don’t let MAV dictate any more of your life than it has to!
I am almost 31, my MAV is far from stable and very affected by hormones - main symtom is vertigo. My husband and I really want to start a family and I am petrified too. At the moment we can’t due to the meds I am trialling, but when I come off them in 6-12 months, we will try. I will be so scared but I am just as scared of missing out on motherhood and regretting it. I know somehow I will get through the pregnancy and the weeks that folllow while the hormones are haywire. After that, you have a lifetime of joy.
Let us know how you go. You have a great support network on this site.

Jsspill-Thanks for the best wishes. I can understand. That would be scary. (daughter falling out of bed and the dizziness!) I How is the medicine that you are currently taking? Is it helping? I wish you the best too! -asteffens98

Aussiegirl1982,

You are so right! MAV has already robbed me of so much and I will not let it rob me of motherhood too. How is it going with the medicine that you are trialing. If you don’t mind, what are you taking?, what dose? Is it helping at all. If I were 31,I would do the same. I am now leaning more towards getting pregnant first and then trying to nurse (my hormones will probably make things change in some kind of way anyway) and then getting on meds as soon as I can. Thank - you for all of the encouragement. No one that I know personally understands what it is like… There are many relationships that I have backed away from just due to the fact that I know that they just don’t get it or understand. They think that you are just a little dizzy or that it is in your head. It is nice to know that there are people that truly understand!! Makes me feel not so alone in this. So I thank you all for that! All my best -asteffens98

I felt heartbroken reading this thread as it hit very close to home. I had 2 sons while sick. they are now 1 and 3. I would never ever regret my decision. However, for me (everyone is different), my symptoms worsened during pregnancy and even worse postpartum. for me, I would never be well enough to take care of them myself. the only reason I was able to have them is because we have a full-time live-in nanny. otherwise, I would never be able to care for them. I am, sadly, very ill and bedridden. I have recently been diagnosed with Lyme Disease having caused my MAV symptoms, and am beginning treatment after 6 years of trying migraine medications to no avail. I know with Lyme the worst time is postpartum. I was told with migraines it’s variable. some even feel better, some worse, some the same. I love my boys more than anything, but the reality is that if I didn’t have the help, I couldn’t care for them. My husband also works long hours and is frequently on call for the hospital where he works. so, although, he’s a terrific dAd, he cannot be home to take care of the kids. He does care for them all weekend when he is off and our nanny goes home for the weekend.

this illness is so cruel and forces us to always be making all these decisions.

I wish you best with making this difficult choice.

Mavlisa,
I am so sorry that you are feeling so badly!! I completely understand! Also, thank you for sharing your experience. What symptoms do you have? I wonder if I should be tested for Lyme? Is it just a simple blood test? I am meeting with my doctor this week and will ask him about it. I am glad that you have so much help! I hope that the new medicine for Lyme makes a world of difference! I will pray for you-asteffens98

Thank you very much. I spoke a lot about my symptoms and Lyme diagnosis on the thread entitled “update: Lyme diagnosis after over 5 years of suffering” any other questions let me know. All the best to you as well

Hi
It’s a very hard decision to make I had a baby September I have had MAV for three and a half years now. I already had two sons 4 & 6 but lost a baby unplanned in 2011 that made me want another baby very badly when I thought I was done.
I never thought I would have or cope with another child whilst having MAV. I was ok in pregnancy pretty good actually my symptoms really stabilized and I carried on working. When I hit 37 weeks my dizziness was awful I was bedbound by the last week of pregnancy and after ward’s I could not walk or do anything at home for weeks I wondered what I had done to myself I cried daily with thoughts of suicide.
By the time I had a second period I was a lot better I’m five months down the line now and over the worst but I went to hell and back. My husband had four weeks off work I was still really dizzy when he went back thought i was dying but I had to do school runs and just carry on don’t know how I did it I felt so ill.
I did see a neurologist December who said ifs very common to be worse postpartum because of hormones.
I am doing well now and feel much like I did before with a slight back ground dizziness I have bad and good days.I would never do it again my family suffered a lot my mom cried with me I lost 3 stone in two weeks afterwards.
I don’t regret doing it I love my son so much and I’m over the worst but if you do decide to do it make sure u have a good support system and prepare yourself for getting worse too I was shocked at how much dizzier I got in a matter of weeks.
It’s a mountain to climb but you do get through it and you will get better again if u do happen to get worse.
Ps I didn’t breast feed I knew what hormones would do to me if I did . Xxx good luck