Hello, any advice would be great

New here, let me introduce myself 🤝
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Hi everyone,

After giving birth to my second baby (literally 6 weeks later) I started to get horrible dizzy, pulling me down sensations whenever I turned my head to the side or looked down. This has gradually got worse and 3 months later I now have dizziness when I turn my head, look up or down. It is fine in the morning but gets worse throughout the day. It is also fine when I sleep. I also have a rocking sensation when stood still or sat still and feel tired a lot of the time. This is now everyday. I get tightness in my face and have a blocked ear every few days. I also have suddenly awful IBS which I never had before again starts up every few days and especially at night. I have had all of the tests MRI etc and all negative.

I have now been diagnosed by an ENT with PPPD and MAV. He said that PPPD normally goes alongside with something hence the maV.

I am not on any treatment yet as I suppose I am a little scared to take anything. I am also worried that this is something I will have forever. The ENT said that stress and lack of sleep do not help the condition. But as a new mother to a new baby and a toddler at home sleep and stress are part of my life!

Just wondering if anyone has been through anything similar and if treatment has worked or is starting to work etc?

Any comments would be gladly received. May help me decide what to do.

Thank you

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Kate, welcome to the forum and sorry to hear you are suffering with this awful thing. Be sure to look through the Support Wiki.

MAV is not uncommon after childbirth. No-one knows why (but I have my theories!).

You should aim to strictly follow the 6C’s diet initially and especially drop Caffeine completely. If that doesn’t improve things enough, then do not hesitate with the medication trials because they can really help get your life back.

I did well on Amitriptyline.

Coming up to 4 years now and I’m not yet 100% but completely dizzy and vestibular symptom free 99% of the time. You might get luckier.

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Hi, and again Welcome. You’ve hit the right place that’s for sure by coming to mvertigo.com. MAV starting post partum isn’t at all uncommon. Happens to lots of ladies it seems. Although you probably won’t actually meet one in the local shop. You’ll find others who post regularly on here with your exact symptoms. @dizzy3 comes to mind. She’s in US and probably not up yet this morning but she’’ll correspond for sure.

As @turnitaround says try quitting caffeine and try a Migraine Diet. The six C’s is a common one in UK. I follow the John Hopkins one, a US one, a copy of which you’ll find in here. You may find you can relate to this lady’s experiences too although she’s not post partum. You’ll find much of it mostly the same.

http://www.laurenkossack.com/vestibular-migraines-journey-finding-answers/

Two comments I’d like to make which might help. Try your upmost not to be scared of MAV because MAV feeds on anxiety and will just ramp up. Some doctors describe it as a ‘migraine variant balance disorder’. Your balance is a very fundamental part of your being. Your vestibular system has gone a bit hypersensitised for some reason and needs to reset itself. Difficult with a new baby you need time, space, support and changes in lifestyle and with time, and most probably, some preventstive drugs, you will recover. It will take time. Don’t know what you’ve been told about MAV but unfortunately it doesn’t disappear as quickly as it sometimes tends to arrive and from my own personal experience I found drugs were needed to get it under some sort of control. it can be a difficult beast to crack. All the best with your new baby, and your MAV journey. You’ll find plenty of friendly supportive people on here who understand what you ate going through. Helen

The bit I missed first time around

This too is reported as being a symptom of MAV. So no need to think you’ve several new cobditions starting all at once.

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You might find this of interest too. Helen

https://www.theguardian.com/society/2008/oct/14/health-healthandwellbeing

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Hi, and welcome to the forum. Lots of useful advice above. Just wanted to add that you’re definitely not alone with developing MAV post-partum. I had it for the first time 6-7 weeks after my son’s birth (it coincided with going back on a contraceptive pill, so hormones must have played a role). At the time I had it for about 3 months. Luckily it cleared and I was 100% well for 4 years. I now have it again, after a wisdom tooth removal. I have 24/7 rocking / dizziness / unsteadiness and pressure headaches.
I understand my MAV to have come on from a variety of factors , both times I had it— too many triggers and stress together and I got dizzy: tiredness, physical trauma (birth/ operation), emotional stress, unsupportive partner,no family nearby to help, and I was also really upset that I wasn’t able to look after my new baby well. My advice would be to make sure you go and get as much support — practical and emotional — as possible with your new baby and daily living. Go easy on yourself, rest when you can, and let go of perfectionism; it’ll take time but from all the stories I’ve read on this forum, no one stays ill forever. You can always PM me if you want to talk.

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Thank you all for your advice. It is very much appreciated. I had never heard of these migraines before at all. I was very confused when given the diagnosis even though the ENT spent an hour with me explaining things it just didn’t sink in too much.

I was breast feeding at the time so I told him that I couldn’t start medication although he recommended Antriplamine (not sure if I have spelt correctly). I am going for a follow up so hopefully I can look to start it then. I have given caffeine up for a month now but not seen any improvement so will look to follow the full diet as you have all mentioned.

Is medication then something you stay on forever? Or do they taper you off it?

Thanks for all of the support and advice. I really wasn’t expecting to have to deal with this and a little baby. I feel so bad for him and his brother as the screams go right through me and feel so bad in my ear and my head! When my toddler screams when playing I feel like my head is vibrating! I am trying my best but it is difficult to stay patient sometimes.

Can I also ask if any of you have heard of PPPD? My ENT said it goes hand in hand with MAV a lot of the time as most MAV sufferers have a level of persistent dizziness too? He also said they treat it in the same way. Also do you guys do VRT? I have heard it can make it worse?

For the UK people, do you think I should get a second opinion or trust my ENT? I am not sure on what the process is really?

Thanks again for all of the help. I have had this for 3 months now which I know is not too long but been very hard with a newborn and feels like it has ruined my experience somewhat too.

Xx

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It’s still controversial.

(but the treatment is not)

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Hi Kate,

Sorry to hear you are suffering.

Mine all started in late pregnancy, that was 9 mths ago! The severe dizziness has gone but I am left with a spaced out feeling, almost drunk and floaty. I also get visual vertigo, where the floor can look like it’s breathing. I also have bilateral blocked popping ears.

I have started amitriptilyne 2 weeks ago. You are not alone, many women are triggered by hormones.

I hope you find your symptoms ease soon whether that be lifestyle change or medication.

Natalie x

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Usually they would keep you on it for a minumum of six months but more likely a year once you have reached a dose that help control symptoms then taper off and see if it returns. In practice I think alot stay on the meds for several years. Just depends.

Why another opinion. Your timeline seems to suit a post partum pattern for MAV development. If the ENT was prepared to give you an hour and offers follow ups, that’s brilliant for UK, stick with him. Give him twelve months. You do need a diagnosis that’s meaningful to you. Unless you are unable to believe the diagnosis I wouldn’t bother seeking a second opinion just yet. The MRI ruled out the ‘nasties’. MAV `symptoms are relatively common.

Use the Search facility on here you’ll find material on PPPD, lots of it including a thread I posted last year.

Many new mums find the same. A hundred years ago it was called Floating Women Syndrome’ and it’s recorded as occurring post partum, and post menopause. There were no drugs then and women’s experience would have been even worse. Listen to @LucyLabrador’s advice here. She’ll help you through.

Certainly finished me off and I’m not alone on here to say that. UK have few good practitioners. It’s not recommended until MAV has stabilised. Walking outside daily is as good as anything. Again, check the Search facility out.

You and most of the rest of the World I suspect! I went 12 years without a diagnosis and my GP still doesn’t recognise it. Be glad you found an ENT that did. Many people think it’s not migraine or query what’s causing the migraine in the first place but IMHO it’s easier - initially at least - to try the meds and see if they work. Helen

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Kate, welcome. I am a fellow postpartum dizzy mom. I’ll reply in more detail later, but don’t dispair. You will get better. Sending love for now.

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Thanks for replying. Will look forward to your response. X

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Thank you very much for your reply. Xx

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Hi Natalie,

Thanks for replying. It sounds very similar to what is happening with me. How old is your baby? Hope you are managing OK. Awful to deal with alongside a baby. How are you getting on with the medication?

Thanks xx

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Hi,

Thank you for your reply. It is helpful to know it has happened to other new mothers. Last thing we need at the time.

Thank you for the advice about trying not to be perfect. I think I was doing way to much before this all struck, trying to be perfect mum, wife and keep a clean house! Was all too much straight after giving birth. Xxx

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Hi! My baby is 8.5 mths old and I’m doing night feeds and know that disturbed sleep doesn’t help with this condition but we have no choice.

Right now my head feels numb and like there is trapped air/weight in my head and behind my eyes and I feel like there is a screen between me and the world.

These symptoms are so bizarre. Everything looks and feels so odd almost like when you have terrible head cold and your vision is odd or like when your really hungover but still drunk.

I would definitely go to your gp to discuss appropriate meds if you can x

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Kate,
Here is a brief story of what happened to me:
https://www.mvertigo.org/t/a-year-living-with-mav-and-still-rocking-life/17074?u=dizzy3

Short story, 4 months after the birth of my son I started feeling weird, after pumping (he never latched, but that is another story…or maybe not!.. I think the pumping kinda altered the natural progression of hormonal fluctuations). I got my period back at 4 1/2 months, after a VERY stressful period, and after all was done and solved, I got this rocking sensation and now I know other symptoms here (derealisation, like @Natty04 describes, or visual vertigo, extreme tiredness, full ears, pain, etc.). I thought it might be pospartum depression, went to the service, and yes, they diagnosed me with pp depression/anxiety, gave me zoloft, which gave me huge insomnia. In the middle of all this I started getting more spaced out and dizzy, and went back to work, great timing, AND we sleep-trained our son, and started weaning. I got the flu, then an ear infection, and insomnia was getting worse, lack of appetite and then the headaches started, and the nausea. I lost like 10 kilos in three months or so. Anyway, I stopped and restarted the zoloft a couple of times, with horrible side effects, and then I saw a neurologist that I self-referred and I told her my own diagnosis: I have vestibular migraines, she agreed and gave me effexor. By then I was so anxious about meds because the zoloft was horrendous that I ended in the hospital because I did not want to get on the effexor at home with my 8 months old! It was nuts, but doctors were super helpful and understanding. I had weaned by then and son was sleeping through the night. So from mid January to end of April, was really difficult. I started effexor May 1st, and titrated up to 75 mg in 5 days (while in the hospital) and stayed there for 4 months, I increased to 112.5 for month, and then 150 and this is where I am right now.

All is going pretty well. I still have the rocking most of the time, but really at this point I feel I can persuade my brain to stop firing the wrong signal, all the other symptoms are pretty controlled. I went to psychotherapy, hypnotherapy, acupuncturist. I think all that help to have a space of my own and to quiet down the mind while the meds did its part. I stayed on the migraine diet (a little extreme because I even cut gluten) for 4 months, and then started to reintroduce foods. I eat everything now, just not all at the same time. Like for breakfast I chose between yogurt or eggs, but not both, or only decaf coffee or one caffeinated tea. Only problem really is that my sleep is not super deep, but it never has been so… The other is that I got a rash and it had to change the generic from capsule to tablet, but the rash is gone. I occasionally have used CBD instead of ibuprofen or tylenol, but I am also not afraid of using them if it is once every two weeks or when I have my period. I am back exercising 3 -4 times a week. Last, I gained 7 kilos back, and trying VERY hard not to gain more (loosing some is a distant dream). I am even thinking now on having another baby! hehe Crazy. Last May I told everyone that this was it, never again.

So, my advise is to try meds and diet. Zoloft works for many people and you can keep nursing while on it. The other is at 4 months you can sleep train baby to sleep 8 hours. I would feed my son at 10 pm, and be with him if he cried but not feed him until 6 am (with the Ok of the pediatrician). By the third night he was sleeping 8 hours. He sleeps close to 12 now and eats everything. Sleep is VERY important. Try to go for walks with your son, that kept me sane. Plus it is nice when they are little because you can carry them or they can sleep in the stroller. Now my son only wants to run, so no more long walks for us. But before he walked, I used to walk at least 1 hour every day. And very important, don’t avoid things. Don’t get super exhausted, but try to go out, etc. Slowly you will see you start getting a feeling of normalcy again, even if dizzy. I just tell myself everyday that I told myself back in May that I wanted just to be less dizzy, and I am less dizzy, so I make the best out of this situation. I have bad moments during the day of course, but I try to acknowledge a bad/ negative thought, let it sink and go. (Why me? why all other moms look so happy? look at this mom, so successful and I need to take a nap right now… let them be, and let them go). I come here frequently because it kind of normalizes my experience for me.

Ok, went to long, you can PM if you want to chat or just vent. It is difficult, but not impossible. Watch the documentary “Heal”, it is kinda new age stuff, but I think the message is how powerful the mind is but also how our bodies can heal themselves. And I think this is why we need the meds for MAV, to control symptoms so our body can heal (or re-adapt to new normal).

Sending love your way.

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@dizzy3 thank you for telling your story, I didn’t know it in that detail. Just wanted to say …, you’ve been through a hell of a lot, I really empathise… having this condition while dealing with a new baby … so so hard… but also makes me happy to read you’re doing better (and even envisaging having a number two !!).

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Thank u so much for replying and taking the time to tell your story. I very much appreciate it. I am glad that you are starting to feel better too and you sound very positive. It makes me feel hopeful.

My symptoms also started just when my first post birth period did too! So strange!

I also really understand the comments at looking at other mom and trying to stop the negative thoughts of “ why can’t I be like them and normal” etc. I do that a lot but am trying to accept my new normal for what it is at the moment. I am lucky so far as I can stilll look after my baby and my husband also works from home which is extremely helpful!

Again thanks for your message.

I have my follow up ENT meeting a week on Thursday so hopefully we will discuss medication then and I can get started on something.

I am trying to compensate for being up a lot in the night at the moment by going to bed so very early in the evening to at least get some rest. As soon as I get my toddler into bed I am getting into bed! Rock and roll! Xxx

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No problem, it is the hormones, I think, that trigger this. Particularly the coincidence with period returning. After a year of having my period back I have finally have normal periods (26-28 days). It was so random post partum. Are you taking any contraception? I am not, and there is mixed reviews about whether it could help or not. I decided not to, no to confuse the body again.

Good that you are sleeping, and sorry for giving you advise about walking your baby, I just realized you have an older kiddo, you know how this works! Maybe your husband can let you sleep a couple of full nights per week? I think sleep is restorative and that is the most important right now for you.

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thanks, well… it has certainly been a very difficult period for me, won’t lie, but there is light at the end of this. :slight_smile: I hope you are doing well and hanging in there. I know this has been a very difficult period for you too.

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