Lost and discouraged ( Daily Vertigo Attacks)

[Ntrees]

Hi everyone. I am new here and would like to share my vertigo journey. I really hope some of you might relate and will be able to suggest things that helped you to cope better.

15 years ago, I used to have ringing in the ear, hearing loss, and massive vertigo attack once a month. I was diagnosed as Menieres Disease and tried everything including Betaserc, diuretics, and a low-salt diet. Nothing helped and I just had to deal with it. It disappeared after 3 years.

Fast forward to a month and half ago. I was 9 weeks pregnant and had hyperemesis where I threw up 40 times a day due to severe morning sickness. One night while throwing up, I had the scariest full-blown vertigo attack. The spinning was so violent that it brought on a panic attack. It lasted about 60 minutes. Since then, I have been having vertigo attacks every single day for the past 90 days :(.

With this comes unsteadiness, 24/7 dizziness, and everything that follows. The most difficult thing, however, is the unexpectedness of a vertigo attack. Sometimes it happens 3 times a day. Sometimes in my sleep. It usually lasts from 30 minutes to 3 hours.

I went to see really good doctors in Massachusetts (Dr Rauch) who are supposed to be best in the field of vestibular disorders. I was told my condition lies in between Menieres Disease and Vestibular Migraine. At this point, they are hesitant to try me on any medications due to my pregnancy. The only thing they suggested was verapamil along with some anti-nausea medications like Ondansetron, Benadryl etc which doesnt even touch my vertigo.

I follow migraine diets. I gave up caffeine, cheese, citrus etc. I try to be calm and positive since I wanted this baby for a long time.

But every single day I have these extreme attacks and I just feel lost and hopeless. Doctors think its not pregnancy related. I wake up and have a little oatmeal and then massive attack. It seems like it happens a lot after I eat something.

So i just became this person who is afraid of even walking outside because I fell few times. I have a very supportive husband and he is currently doing everything for us. Has anyone experienced DAILY vertigo attacks? Or attacks brough by pregnancy?

I just need some hope because I dont want to sink into depression.

Any thoughts or similar experience, advices are greatly appreciated.

[Onandon03]

Hi and welcome. So very sorry you are suffering and at what should be such a happy time too. The links between vestibular conditions and hormones are too numerous to mention. Many women start up with vestibular issues post partum, some who are regular migraineurs actually experience a cessation throughout pregnancy. It all depends on the individual in question. If you insert a keyword or two into the Search facility I’m sure you will find examples in our vast archive.

With regards to hope just think all being well in a few months you will have your long awaited child and a whole new world as a family of three will begin. There’s your hope. Meanwhile all you can do is to take each day at a time and look after yourself and be happy in your supportive husband. At times like this they can prove worth their weight in gold.

With regards to the VM Dr Rauch is well respected in his field so you have been lucky there too all you can do is follow his advice. Nor exactly sure which medication you don’t think is working. I’m sure the clinic would have told you Verapamil is a preventative. It is intended to stop future attacks. It doesn’t stop those currently in the pipeline and it takes several months usually to take full effect.

Daily vertigo attacks? That is pretty horrendous. Unfortunately not uncommon with VM when patient is symptomatic. I myself have had them every day all day (and every time I turned over in bed at night too) in fact every time I moved or opened my eyes during acute attacks although to date the longest attack has been eleven days. I’ve certainly had constant room spinning vertigo 24/7 for eight days at a time too. Always made me violently sick and worse. However I was never pregnant at the time. Far from it. Mine started with menopause so there are close hormonal connections. My way forwards was preventative medication.

Did you tell the doctors about the connection to eating? Would be a good idea. I’m not a medic but they would possibly indicate some connection to metabolism I’d have thought. Always worth exploring every Avenue.

I know it will sound awfully cheesy but you really do need to try to keep cheerful and to ‘Count Your Blessings’. One practical way to get your spirits up is walking outside particularly in nature. Very good for both physical fitness and mental health. If you feel unsteady use a walking stick or hiking poles and get somebody to accompany you but do try to get outside each and every day. You must not allow yourself to become frightened of being outside. That is a very hard habit to break.

[TexOkie]

Welcome,
Helen has given some good advice. Stay as active as your pregnancy will allow. Don’t give up walking, a cane or walking stick will give you the extra stability to be maintain your activity.

The good news is that the pregnancy is likely driving your disorder. Hopefully, once you deliver you may very well return to normal.

Your doctor is right to be cautious about prescribing drugs. Many of them have contraindications for pregnant women.

Keep your chin up, figuratively speaking.

[MK18]

My sister suffers from terrible migraines although it is migraine with aura. Since she has been pregnant she has had one every second day so I would guess pregnancy is the issue!

[sputnik2]

Hi Ntrees

Congratulations on your pregnancy but so sorry you are having a bad time with vertigo. Are you still having hyperemesis? The dehydration from that can really fuel migraine/vertigo in a vicious circle. I wish pregnant women and migraineurs who vomit could access IV rehydration on demand. I’ve read that for some women after the first trimester vertigo can ease off (as does the vomiting)

I’ve had daily vertigo that laid me up in bed for 3 months 3 years ago. I had to sometimes crawl to the bathroom and lost 2 stone as I couldn’t tolerate food. I survived on nibbles of cream crackers. I just lay there wishing for some respite with sleep and hoping it would pass. Eventually it did abate enough to start doing simple things again and travel to see a specialist and get on some meds.

I’m older than you, but like you I was originally diagnosed with Menieres (25 years ago, 6 months post partum) and the drugs and diet for it didn’t work for me either and I was told I’d have to live with it and largely it mostly was under control with no meds for a long time. I had labrynthitis when I was 7 months pregnant and couldn’t move my head without vomiting or hitting the floor - scary . Being pregnant adds a whole extra level of worry - so you have my utmost sympathy.

It’s great that your husband is being supportive. Take any help you can get, don’t be a martyr (I have a tendency to do that) and get certified sick to take time off work if you can. Your workplace won’t grind to a halt without you. Just focus on yourself. Rest up as much as possible, don’t force yourself to do much, take vitamins even if you can’t eat much. Over the years when I get bad patch it always abates eventually. Notice even small and achievements as good signs, they’ll likely increase every day. The old adage, “When you are going through hell, keep going” might sound a bit trite but it’s what you need to do.

Have you tried the verapamil?

There are a lot of old threads in the Women’s Biz section on pregnancy and MAV/VM such as this one:

Pregnancy and VM

Im sorry you are going through this. I got vm during my first pregnancy and ended up having a second baby with it because it took 3.5 years to be diagnosed, so i went all that time with no meds, but i did improve during my pregnancy a after the first 3 months and it did get worse for the births but once breastfeeding settled down i further improved enough to do VRT and i was doing well for a while. My symptoms would go up and down but never disappeared completely. You are onto a great thing bein…

I really hope things improve for you.

[VMDrummer]

Wow, new here, but have a very similar medical history, and just saw Dr. Rauch today (given a diagnoses of VM to add to my previous Meniere’s diagnoses). I see that your post is from the summer time. I really hope you had some improvement in your symptoms and also hope that you are very close to, if not have already, started your new family. How amazing, I hope you are doing well now.

[TexOkie]

Has anyone heard from Suzanna? I wonder if she had a boy or girl and if her symptoms finally subsided?