Pregnancy

Has anyone experienced or heard about what pregnancy does to our symptoms. The reason that I ask is that if I was well, I would definitely be trying to have a baby now. THe one thing that my doctors have agreed on is that migraine usually get better when pregnant. Thus far, no meds have helped me, and I cannot take any meds when pregnant. I wonder if this actually would go away during pregnancy. However, this is a chance that I probably don’t want to take, as ideally I want to feel well enough to take care of a baby. Right now, I am so disabled that I can hardly care for myself and husband. Any input would be helpful. thank you.
Lisa

Dr. hain told me that if it is truly MAV, symptoms should get better during pregnancy.

Hi,

I am also thinking about maybe having another baby soon to see if it would help my symptoms if I really do have MAV or MDDS. My husband and I have only one child and we would like one more at least. I have heard that some women get better or go into remission.

I too, have chronic disequilibrium and its so horrible. It gets to the point that I hate geting up from the couch to walk around because I feel like the floor is a waterbed or trampoline. Is that what is it like for you? I’m to the point to where I don’t know if I have Mdds, MAV, or possible something wrong with my inner ear even though tests so far have come back normal. I might have accidentally injured my ear when this first started because I remembered a few days ago that I blew my nose really hard and I heard this whistling sound in my left ear, almost as if something gave way inside my ear. I hope and pray I didn’t injure myself. I’m going to my first appointment with a Neurotologist on Wednesday so I’m praying that he will give me some answers and help me. I don’t want to live like this for the rest of my life, its so devastating. I just want to be able to walk normally!

those are my symptoms exactly and I have MAV. I wish you lots of luck with your appt. I hope you can get better soon than I have. I have been sick for 2 years, and am 32. what is MDDS - the only thing I can think of is major depressive disorder but that doesn’t cause dizziness, so please let me know what that means. Thanks for the feedback and I wish you lots of luck

Hi Lisa,

It’s Mal Disembarkment syndrome. It’s really rare and its basically where someone goes on a cruise, airplane, etc and once they get off they feel like they are still on the vehicle. Walking on a trampoline or waterbed is one of the symptoms. I was on an airplane about a month and a half before this started for me so I don’t know if I would be diagnosed as having this, but I read that just riding in a car can cause it as well.

Do you also feel like you are swaying, shifting when sitting still, laying down? When you are standing still, do you feel like you are kind of bobbing up and down or shifting?

I am praying every day that we will all find some help. I can handle all my other symptoms even the feeling of movement when sitting and lying down, but the walking is what bothers me so much.

Lisa :

Dr Newman said the same thing at one of his Support groups. He said pregnancy helps and as a women get older Migraines seem to fade as a lot of triggers are hormonal…

I guess I am out on both of those…LOL

Howie - :slight_smile: yes, you are out on that. thanks for the input though. And you raised good points about klonopin on the other post. you just need to go off of it gradually.

dizzyinaz-the worst for me is absolutely the dizziness when walking, as it is the most disabling by far. I feel pretty still compared to walking when stationary. But, we all can have different variants of symptoms with MAV. I am no expert, but I am more convinced that you have MAV. do you have other symptoms - I am also extremely fatigued no matter how much I sleep, with brain fog, intermittent nausea, and just feel generally very unwell, as if I’m coming down with a bug. I also have facial pressure. I hope you can figure out your diagnosis. I hate that there is no black and white test.

Lisa,

Do you have any family that could help you, if you did decide to have a baby? I’m really thinking about it now, once I know for sure I don’t have any inner ear injuries that are causing my disequilbrium. I’m going to talk about it with my husband tonight to see what he thinks. I want my son to have a little brother or sister, and I know my son would love to have a brother or sister, but like you, am worried if I don’t get better during pregnancy, how hard this will be. I am hoping so much that I will improve and then after I give birth I can find the right medicine.
Luckily I have my Mom to help me, my Dad unfortunately passed away unexpectedly several years ago. I hope so much that you will improve, I am praying for all of us everyday.

Hi Ladies,

I saw this post yesterday and hesitated about responding. Having a baby is such a huge personal decision that I feel a little funny sharing an opinion. Actually, I don’t really have an opinion about whether you “should” have a baby or not while you are suffering from MAV. I will offer my experience though.

I too have heard that migraine can improve during pregnancy. However, I had my first horrendous migraine with aura while I was pregnant with my daughter in my early twenties. So, my experience is opposite. It scared the heck out of me because I didn’t know what it was. I had a few migraines during pregnancy and sporadically for a few years after. They went away after my hormones stabilized. They came back in MAV form in my mid thirties. Hormones are my biggest trigger.

I personally cannot imagine trying to take care of a baby with this condition. I’ve only gotten as well as I have, 80-90% most days (sometimes more, sometimes less), by focusing on myself and my routine. I can do that since my daughters are teenagers and mostly self-sufficient. Don’t get me wrong; I am a very involved mother, but I don’t have to get up to feed them, bath them, put them to bed, etc. whenever I’m not feeling well. The lack of regular sleep that comes with a new infant would send me in a tailspin.

Okay, I guess I’m going to offer an opinion after all :wink:. If I were you, I would decide whether I thought I could handle raising a child if I never got better. I wouldn’t base it on the chance that I might get better during the pregnancy. Hormones are a huge factor for many of us, and the roller coaster ride during and after pregnancy is going to be unpredictable in terms of MAV.

Whatever you decide to do, I wish you the best. I understand the desire, love, joy, and reward of being a parent. I truly hope you are both well enough soon to make this discussion irrelevant.

Take care,

Marci :slight_smile:

MArci - thanks for the input. I realize it is a personal decision but you give good feedback. My husband and I want to work on getting me better first. I can’t imagine caring for a child the way I feel, but hate for my whole life trajectory to be changed by this. I’m not old - 32 - but always wanted several children and would have started at this point. I am going to try at least 1 more med before considering pregnancy

Dizzyinaz - I can relate to everything you say. My husband and I are moving soon. I have a very small family (my parents) and they’ll be living about 2 and 1/2 hours away, so they won’t be around everyday, and my husband works a lot. I HATE how this illness affects out lives, but we will be better for it. I, too, watch people who walk around taking balance for granted. But, I did that too. I would have never imagined any of this.

— Begin quote from “MarciM”

Hi Ladies,

I saw this post yesterday and hesitated about responding. Having a baby is such a huge personal decision that I feel a little funny sharing an opinion. Actually, I don’t really have an opinion about whether you “should” have a baby or not while you are suffering from MAV. I will offer my experience though.

I too have heard that migraine can improve during pregnancy. However, I had my first horrendous migraine with aura while I was pregnant with my daughter in my early twenties. So, my experience is opposite. It scared the heck out of me because I didn’t know what it was. I had a few migraines during pregnancy and sporadically for a few years after. They went away after my hormones stabilized. They came back in MAV form in my mid thirties. Hormones are my biggest trigger.

I personally cannot imagine trying to take care of a baby with this condition. I’ve only gotten as well as I have, 80-90% most days (sometimes more, sometimes less), by focusing on myself and my routine. I can do that since my daughters are teenagers and mostly self-sufficient. Don’t get me wrong; I am a very involved mother, but I don’t have to get up to feed them, bath them, put them to bed, etc. whenever I’m not feeling well. The lack of regular sleep that comes with a new infant would send me in a tailspin.

Okay, I guess I’m going to offer an opinion after all :wink:. If I were you, I would decide whether I thought I could handle raising a child if I never got better. I wouldn’t base it on the chance that I might get better during the pregnancy. Hormones are a huge factor for many of us, and the roller coaster ride during and after pregnancy is going to be unpredictable in terms of MAV.

Whatever you decide to do, I wish you the best. I understand the desire, love, joy, and reward of being a parent. I truly hope you are both well enough soon to make this discussion irrelevant.

Take care,

Marci :slight_smile:

— End quote

Marci,

I understand exactly where you are coming from. You know I am so thankful everyday that this condition did not hit me until my children were grown. We were so very involved in their lifes especially as they reached their teen years.

Both of my children son and daughter were very involved in sports and we spent every waking hour taking them all over the southeastern United States involved with traveling ball teams. My son played baseball and my daughter played traveling softball from the time she was ten years old. I would have missed all of that with this disease. I look back and I am so thankful I was given that quality time with my children. They are now 25 and 23, one is still at home and the other lives out on her own.

I can not imagine trying to do what we did if I had this condition at that point and time in my life, much less when they were small and my husband worked nights and sleep being disrupted on a daily bases.

None of this even the headache part hit me until I was in my late thirties, I would have headaches on occasion but not like the ones I had later in life.

I know having children is one of the most joyous part of a persons life but I can not imagine trying to deal with the day to day things if I had this and was just starting to have children. They demand and deserve so much of our time .

I do not know about whether preganacy makes it better because I was not in that circumstance.

It is a personal decision and I suppose all has to be weighed and decided by each person making that decision for themselves.

Either way I wish you all the very best of luck with whatever decision you make children are a joy but they are a big responsibility both physically and emotionally. But being a parent I can not imagine my life without mine , I am only glad I was given those years with them free of this disease.