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Old 05-24-2010, 08:03 AM   #1
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Location: california
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gabrielkelly HB User
Anyone pregnant with a Vestibular Disorder?

Hey "girls"...

SO it's been a really long time since I've been on this board. Have a loose diagnosis (closest one I could get) of MDDS. It has a lot of the same symptoms as with most of these conditions - rocky boat, some minor dizziness, bobbing up and down as I walk, etc. - however with lot's of exericize, eating right, etc. I've gotten better. It's been 15 months now however, and not sure when this will all end (I know it will someday), so realistically this is something I've just had to come to terms with and stay as positive as possible... and jump back into my life as normal.

Here's my dilemma - I got hit with this disorder three months after having my first baby. Jumping back for a second, I was told that while you're nursing you shouldn't have a cycle, but I did get mine almost three months into it. A week after I started... I got this condition. Now that I have MDDS, it's also very aggrivated by hormone shifts... like my cycle and ovulating. I would SOOOOOOOO love to have another baby... but I'm very worried that it could make me worse. But then I also think that it could make me better.. since I wouldn't be ovulating or experiencing my cycle. So my question is, has anyone gone through this? Have any of you had babies while managing these conditions??? I'm horribly concerned that if I were to get worse, that I wouldn't be able to be pregnant and take care of my son... and two babies once the second was born.

Maybe I'm being paranoid... but felt that it was a valid concern, and would just LOVE to hear of any of you that have been preggo while battling these nasty "rocky boat/dizzy symptoms".

The doctors, including my OB, know nothing about this and have no experience with this and pregnancy, so wanted to reach out to the people that would actually have some advice -you MOMS.

Trying to stay super positive, and active, etc. But would love to add one more sweet baby to our family of three.

M.O.M. (MOM ON a MISSION - to get better )

Tammy

 
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Old 12-12-2011, 07:31 PM   #2
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Join Date: Dec 2011
Location: Southern California
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momof2girlss HB User
Re: Anyone pregnant with a Vestibular Disorder?

Quote:
Originally Posted by gabrielkelly View Post
Hey "girls"...

SO it's been a really long time since I've been on this board. Have a loose diagnosis (closest one I could get) of MDDS. It has a lot of the same symptoms as with most of these conditions - rocky boat, some minor dizziness, bobbing up and down as I walk, etc. - however with lot's of exericize, eating right, etc. I've gotten better. It's been 15 months now however, and not sure when this will all end (I know it will someday), so realistically this is something I've just had to come to terms with and stay as positive as possible... and jump back into my life as normal.

Here's my dilemma - I got hit with this disorder three months after having my first baby. Jumping back for a second, I was told that while you're nursing you shouldn't have a cycle, but I did get mine almost three months into it. A week after I started... I got this condition. Now that I have MDDS, it's also very aggrivated by hormone shifts... like my cycle and ovulating. I would SOOOOOOOO love to have another baby... but I'm very worried that it could make me worse. But then I also think that it could make me better.. since I wouldn't be ovulating or experiencing my cycle. So my question is, has anyone gone through this? Have any of you had babies while managing these conditions??? I'm horribly concerned that if I were to get worse, that I wouldn't be able to be pregnant and take care of my son... and two babies once the second was born.

Maybe I'm being paranoid... but felt that it was a valid concern, and would just LOVE to hear of any of you that have been preggo while battling these nasty "rocky boat/dizzy symptoms".

The doctors, including my OB, know nothing about this and have no experience with this and pregnancy, so wanted to reach out to the people that would actually have some advice -you MOMS.

Trying to stay super positive, and active, etc. But would love to add one more sweet baby to our family of three.

M.O.M. (MOM ON a MISSION - to get better )

Tammy
Hi Tammy,

I realize this post is more than a year old but I was intrigued by your posts because your symptoms match mine exactly. My symptoms started 3 months ago. I have chronic rocking dizziness and every time I walk the ground moves under my feet. It is much worse when indoors (my house, grocery stores, department stores, etc.) I have had an MRI which came back normal. My neurologist thinks I have Migraine Associated Vertigo (mav) and he had never even heard of MDDS until I brought it up to him and he Googled it (lol!). I was not on a boat though so it's strange.

Anyway, this has really taken a toll on me and my family. This has caused me a lot of anxiety which aggravates my symptoms. I am a stay at home mom of 2 girls. I am currently taking Nortriptyline (an anti-depressant used to treat migraine) but it's been only a week so I can't tell if it's working yet. I think you have a really positive attitude and I'd love to hear (a year later) how you are doing and if you have found any answers.

btw - I hope you decided to go for that second baby.

 
Old 12-13-2011, 04:37 PM   #3
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Join Date: Mar 2010
Location: Netherlands
Posts: 21
dizzym2010 HB User
Re: Anyone pregnant with a Vestibular Disorder?

Quote:
Originally Posted by gabrielkelly View Post
Hey "girls"...

SO it's been a really long time since I've been on this board. Have a loose diagnosis (closest one I could get) of MDDS. It has a lot of the same symptoms as with most of these conditions - rocky boat, some minor dizziness, bobbing up and down as I walk, etc. - however with lot's of exericize, eating right, etc. I've gotten better. It's been 15 months now however, and not sure when this will all end (I know it will someday), so realistically this is something I've just had to come to terms with and stay as positive as possible... and jump back into my life as normal.

Here's my dilemma - I got hit with this disorder three months after having my first baby. Jumping back for a second, I was told that while you're nursing you shouldn't have a cycle, but I did get mine almost three months into it. A week after I started... I got this condition. Now that I have MDDS, it's also very aggrivated by hormone shifts... like my cycle and ovulating. I would SOOOOOOOO love to have another baby... but I'm very worried that it could make me worse. But then I also think that it could make me better.. since I wouldn't be ovulating or experiencing my cycle. So my question is, has anyone gone through this? Have any of you had babies while managing these conditions??? I'm horribly concerned that if I were to get worse, that I wouldn't be able to be pregnant and take care of my son... and two babies once the second was born.

Maybe I'm being paranoid... but felt that it was a valid concern, and would just LOVE to hear of any of you that have been preggo while battling these nasty "rocky boat/dizzy symptoms".

The doctors, including my OB, know nothing about this and have no experience with this and pregnancy, so wanted to reach out to the people that would actually have some advice -you MOMS.

Trying to stay super positive, and active, etc. But would love to add one more sweet baby to our family of three.

M.O.M. (MOM ON a MISSION - to get better )

Tammy
Dear Tammy,

Sorry to hear you are also part of the "dizzy world".
I am not pregnant, but your post caught my attention because I am wondering if you have been diagnosed correctly..? The problem is, that a lot of these vestibular disorders have overlaping symptoms, so it can be very difficult to make the correct diagnosis. But when you mentioned that you had developed MDDM only 3 months after having your first baby and that your symptoms get worse with the hormonal changes, it made me think of MAV - Migraine Associated Vertigo. It is very common to develop MAV straight after giving birth and it is very connected to hormonal changes... Did you develop your symptoms after being on a trip (by boat, by plane?). That is when normally MDDM appears...

I don't know, I am not a doctor, but I have been through a lot over the past 11/12 years, done all sort of tests, seen all sort of doctors and read as much as possible about different vestibular disorders, so I was just wondering if, given your story, you have been correctly diagnosed...

Anyway, hope you can find other moms who can advise you but in any case, if you have any questions, please feel free to ask them! (I was diagnosed with bilateral vestibular loss and possibly MAV)

 
Old 12-15-2011, 02:18 PM   #4
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Join Date: Dec 2011
Location: Southern California
Posts: 2
momof2girlss HB User
Re: Anyone pregnant with a Vestibular Disorder?

Hello,

You said you were diagnosed with MAV? That's what my neurologist thinks I have but I have no history of migraine and my dizziness is more like an on a boat sensation 24/7. Is that what yours is like? Have you found any medications that help? I'm currently taking 20mg/day of Nortriptyline. It does wonders for my "brain fog" but I'm still on a boat 24/7.


I'd love to hear if you've found anything that works. It's been 4 months for me.

Thanks!

 
Old 12-15-2011, 04:06 PM   #5
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Re: Anyone pregnant with a Vestibular Disorder?

Quote:
Originally Posted by momof2girlss View Post
Hello,

You said you were diagnosed with MAV? That's what my neurologist thinks I have but I have no history of migraine and my dizziness is more like an on a boat sensation 24/7. Is that what yours is like? Have you found any medications that help? I'm currently taking 20mg/day of Nortriptyline. It does wonders for my "brain fog" but I'm still on a boat 24/7.


I'd love to hear if you've found anything that works. It's been 4 months for me.

Thanks!
Because your symptoms are likely tied to hormone changes, MAV sounds very likely. Most MAV patients experience a rocking sensation, exaclty what you describe. Brain fog is a large component of MAV, and the fact that Nortriptyline has releaved the brain fog shows that there is probably a neurological component to your balance problems. Follow your doctors advice and titrate the dose upwards when the doctor recommends.

 
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