The Vestibular Migraine & Secondary Hydrops Community
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#1

Hello, Time to introduce myself. I’m a 41yo woman from Los Angeles.
My current symptoms came on a couple weeks after a mild 2-day bout with stomach flu in Jan 2018. I was at a restaurant for brunch and all of a sudden I felt extremely nauseated, cold sweats, dizzy and pulsing vision. Rushed home, laid down and symptoms subsided. Next day I woke up with severe nausea (no vomiting and have never vomited), diarrhea, vision problems (difficulty focusing, blurred vision, seems like objects are moving), and dizziness.

In the past 8 months I’ve lost 35 lbs from the constant nausea and am quite debilitated.
Currently I have:
the horrid nausea, dizziness, feeling like Things move when I look around, sometimes I need to hold on to someone when I walk bc I get the spins, Pulsing vision, difficulty focusing vision, feeling like I am in a dream, Foggy brain, difficulty reading, stores or places (like a library) w lots to look at make me feel awful, pressure behind my eyes, ear fullness, headaches (but not migrainous).
I can have some ok days but mostly very difficult to manage days.

I’ve had something similar occur twice before. Once at age 11 (1988) and again at 21 (1998). Since my biggest concern was the nausea I always went the gastroenterology route and Neither time were the doctors able to diagnose anything. At 11, after several months with no treatment or answers it slowly resolved on its own and I was symptom free until it came back 10 years later in 1998. I had to take a semester off college because I couldn’t function. After months of suffering and probably as a last resort my PCP threw out the term “IBS” and gave me Paxil which seemed to alleviate everything and again my symptoms subsided. I went off paxil after about a year and never thought about it again.

Fast forward 20 years and here I am again. This time, I cut straight to the chase and in Jan. went right on Paxil since it seemed to have helped in 98. I thought - maybe this is just all in my head. The Paxil did not go well. It made me agitated, made my dizziness so bad I couldn’t drive and made my nausea worse. After 1.5 months on Paxil I cross-titrated onto Prozac. Along with all the bad side effects from Paxil, after 2 weeks on Prozac I was having extreme anxiety and then suicidal thoughts which I had never had before. So I stopped that and decided psychotropic drugs are not the answer for whatever is going on with me. I should note, I had been given temazapam and Ativan to sleep and both were horrible for me.

I saw a functional medical doctor (like a naturopath but w a western medicine medical degree). She tested for a myriad of issues. Nothing conclusive but I went on a bunch of supplements and an elimination diet but that too made me worse. So I had to stop.

I was trying to avoid the Doctor rabbit hole route since it had been fruitless the last 2 times in my life but I now realize I DO have something. This isn’t normal and I need to get to the bottom of this.

I started w gastroenterology due to the weight loss and nausea and everything normal there.

I saw a neurologist who requested an mri and vrt assessment.
MRI is normal
VRT therapist suspects Vestibular Migraine

I saw an ENT and had an auditory test, impedance test and VENG. Found out yesterday those are All normal.

I also saw a neuro-opthamologist and all normal there.

Additionally, saw endocrinologist and standard hormones were normal.

From the ENT I saw yesterday I got a referral to Dr. Baloh at UCLA and will set up an appointment there. Most of my care is at USC and I have an appointment w a Neur-otologist there on 9/10. After much calling for a cancellation I was able to get an earlier appt w his Physician Assistat for next Monday. But not sure what to expect there since she’s just a PA.

I’m in the depths of this condition and still flailing without a diagnosis. Wondering how I’m going to make it each day.

Long story. Thank you for listening and if you have any similarities to my story I’d really love to hear. Before this struck me I was a very happy, healthy and active mother of 2 young boys with a great life and husband. With every ok day I get my hopes up only to be crushed by the awful days that ensue. This page has been helpful in providing guidance and support even as a lurker. Thank you.


#2

Hi

Hello and Welcome. Glad you felt able to come out from ‘lurking’ in the shadows and actively join us. I ‘lurked’ too, once a few years back as the site was moving to FB and then again over a longer period which ended up with me joining up too.

As you’ll already know from your ‘lurking’ we aren’t medics, just a support group but there’s plenty of experience and well read bodies about to offer support as and when. Glad you’ve already found mvertigo.org useful.

From my own experience, and I can really sympathise with the nausea - had it myself constantly and over long periods, many months at a time -, your VRT therapist is probably correct although you should have a better idea once you’ve seen a neurologist or neuro-otologist consultant for sure. Noting your current age and the fact that your first attack happened age 11, could well be a connection with fluctuating hormones. Mid October seems a long wait as you are suffering but maybe you’ll be able to arrange some improvement at your appointment with the PA. I do hope so,

As you have probably already read MAV is usually diagnosed at least partially by history so try to think through and go prepared. Good Luck.


#3

Thank you @Onandon03!
What helped your nausea? I’ve tried zofran and that just makes me dizzy and tired and gives only a couple hours of relief. Dramamine has helped when I wake up in the middle of the night w nausea but also think it makes me drowsy. Haven’t tried it during the day to know.
And I realize we are an international bunch so I should have noted my neuro-otologist appt is September 10 (9/10 for us Americans) but sending my referral to Dr. Baloh today and maybe I can get in to see him sooner.


#4

Prochlorperazine (aka Buccastem) controlled it but you can only take it short term few days maybe. I had it in pill form, buccal so you leave them high up on your gum to dissolve, ie don’t have to swallow with water, even if you could which I never could have done anyway. Mecllazine, aka ‘Sea Legs’ as used to be here in UK at least is popular too. I also had prochlorperazine by injection once or twice which avoided me ending up in hospital on a drip!

Nausea, with/without actual vomiting is a MAV symptom as it is also a symptom of photophobia too all of which means a good migraine preventive will stop it providing that’s what you have in the first place.


#5

I had very similar experience with Paxil. 20 years ago I went on and off Paxil for depression without any issues. But when I went on Paxil this time with vestibular migraine the results were awful. Like you reported I had severe anxiety and all kinds of crazy thoughts, insomnia, I just felt super sick. I stayed on it for a long time though cause I didn’t know what else to do. Then I had to come off it, which was even harder.

Do you have headaches? Or, maybe what you’d describe as “head pressure”? If so, it might be worth discussing with the Neurologist again. I denied that I had headaches, but my Neurologist is good and was able to identify my “head pressure” as a type of migraine headache. You may have to go to a couple Neurologist before you get one that will diagnosis a vestibular migraine if that’s what you have.

I don’t seem to get a lot of nausea, but when I do I use ginger. Mostly I have boat rocking and floaty feelings. When I feel motion sick, I get headaches more than nausea.

Hang in there! I’m sure you will find treatment and you will get better. These things just take way longer than we would like. Anything you can do to calm your brain down a bit would be helpful.


#6

Hi @Nattitude I had to comment on this as you actually sound like me ! Like you I had odd episodes ages 12/19 both eventually passed on their own and in comparison. To now weren’t bad . 9 months ago I felt very dizzy and the. It all started I have all the symptoms describe the dream feeling being the worst ! I actually got diagnosed at 19 with Vm and then again 10 years later at age 30. So it seems we are similar in going years with nothing then bam! Hopefully I can offer you some reassurance that is does sound like Vm and although you haven’t agreed with certain meds this time that worked last time. I am so very sure got will eventually find your combo to get you back to where you were :slight_smile:


#7

Thank you for reaching out, @Amylouise I just replied to your pm :slight_smile:


#8

Thanks @ander454.
How strange that our bodies completely rejected something that once helped us. I find it hard to believe that our physiology would change so much…

I have occasional pressure and headaches but nothing that sounds as debilitating as migraines sound. I’ve never had a migraine type headache. I see my neurologist next Tuesday to discuss all my test results and next steps.


#9

@Amylouise I’m a dummy. I didn’t realize that the email notification about your post doesn’t go directly to you. Anyhow, here’s my reply.

Thank you so much for reaching out Amy! I started reading your story and you’re right, we are so similar! God that makes me feel less alone to know 1 person in this world similar to me.

I saw my vestibular therapist today who has been really helpful in seeking answers for me and she spoke to a vestibular PT expert about my case and another possible diagnosis is: persistent postural perceptual dizziness (aka PPPD or 3PD). I see my neurologist [next Tuesday to discuss next steps. I’m totally open to try meds again but very slowly and under the direction of a knowledgeable doctor. I can see strong relations of my symptoms to both VM and 3PD. And it seems treatment for both is similar. Although since I don’t have the debilitating headaches I wouldn’t need meds for that.

How are you getting on? I know this has upended your life the way it has mine given that you’re a personal trainer. I worked out 5 days a week and was truly the fittest and strongest I have ever been. So happy and healthy. Invincible, I thought. Some of the exercises my VPT has me do are so ridiculously basic that I tear up at the fact that I’m struggling to do them.

I hate the dream feeling. Like I’m not part of real life. Maybe it’s our brains trying to protect us from this awful trauma.

When you got this at 12 and 19 how long did it last? For me at 11 it lasted maybe 7 or 8 months and at 21 it lasts about 6 months, probably bc the paxil helped.

I’m so glad to have someone who truly understands. Thank you.


#10

@ander454 what are you taking now and is it helping? P


#11

Verapamil, after a couple months its helping a lot. It wasn’t easy for me to get on it but I’m glad I stuck it out. Have made some life changes though and I do all the supplements too. I currently have some floaty / off balance feeling and occasional head pressure (mild), but not too bad. I’m getting there…


#12

Hey. Natalie :slight_smile:

Honestly I’m with you that’s exactly how I felt when reading your story . Ah yes the pppd diagnosis for me I also don’t have headaches I get pressure tho. However I get this odd visual symptoms which I didn’t have as a kid it’s kinda like visual shimmering and visual snow so my neuro said this is 100% migraine as that’s not linked to pppd however I guess you could have both but the treatment is the same so I guess it’s irrelevant to go on a witch hunt!

This completely threw my life out my bf lives in la and I was meant to be moving there well needless to say I can’t fly yet :confused: whic sucks . So when I was 13 it lasted around 6-8 months and when I was 19 around the same maybe a bit longer . But it was never this severe and it was episodes so it wasn’t constant so I didn’t worry as much . This time it’s like everything I had as a kid x 10000 and 247 in the beginning I couldn’t leave my bed I am not like that now so I have improved which gives me hope that if it can slowly improve please god it can go away!!

I def think you need a good neuro otoligist they are the best for our condition I see someone called dr surentherin who a lot in the uk see. I’ve been on meds for 3 months now but not at a high enough dose I felt some minor relief and then it kinda stopped so now I’m going higher if no luck I will change meds . I’ve come to the conclusion I will need a high dose of most drugs as I have a high tolerance to drugs . Must be my active brain lol

I feel you on the vrt exercises I dropped a barbell when this first happened BUT I can train again now I have to take it very easy and I can’t run but just being able to workout again is something so keep faith you will get there :slight_smile:

Did you have the same symptoms now as u did back when you were a kid ? Also interesting about Paxil did it woke quite quickly back then ? Rest assured we will beat this it’s just not a simple road .
Xxx A


#13

Hard to believe maybe but it’s not uncommon from what I’ve read. Sometimes people with MAV recover sufficiently to quit the drugs then MAV returns years later but they soon find the drug that worked before doesn’t work a second time. Sometimes people continue on the same drug for years successfully and then it suddenly stops working. Obviously something somewhere must change.

But what is a migraine headache really like. I’ve spent hours thinking the same. I did have strange ‘sick’ headaches as a young girl just a few but never the sort of migraine headaches various friends have since described to me, including need to lie in a darkened room, aura etc, etc. Now ‘talking’ to people on here I’m not so sure. As mine have morphed over time to include photophobia, sound sensitivity, head pressure, ear pressure etc I now wonder. @dizzy3 tells me the head pressure, particularly at the back and ear pressure etc, I experience ARE migraine headaches.

@janb, @Amylouise

It’s a very common pattern for MAV to start in childhood as ‘sick’ or ‘abdominal’ pain-type headaches usually accompanied by motion sickness which they appear to grow out of then reappear later in life, ie post partum, menopause or at some other time where fluctuating hormones occur for whatever reason then reappear as MAV with dizziness and often but not always without headache. I was like that myself. Apparently it’s much more likely to come back as MAV if you have had a long, clear migraine spell between, like me. So much of this must be ‘hormones’!

In actual fact it was discovering this pattern that confirmed my MAV to me because it made sense.

In my case If it had occurred other than at menopause one might have wondered what caused it but there can be a load of triggers. Stress can affect hormones. A friend’s mother was having her very regular period the day her husband was killed in a RTA. Her period ceased and she never had another one or any menopausal symptoms. The brain really is in control.


#14

@Onandon03 @Amylouise

I am convinced that stress plays a part - things have been particularly stressful for me since last November and when I look back there were little signs that all was not well. The power hoop session was obviously the last straw.
The brain is a really powerful, complex organ and I know that it is in charge of of a lot of the things that have made me Ill in the past and now of course.
I still find it difficult to appreciate that my head and ear pressure are a migraine - this is such a weird complaint!


#15

Sorry should have included @Nattitude in my reply - when I work from my iPad everything looks different on this site.

This is the best place for advice Natalie - a real lifesaver.i hope things get better for you soon - good luck with your appointment in September. X


#16

@Amylouise Oh when you move to la we must meet!

I see my neurologist on Tuesday and will have a long discussion about who I should be with whether Neuro-otologist or migraine neurologist (she’s neither of those). I got a referral to Dr. Baloh at ucla who is a mav guru but the reviews on him as a practitioner are mixed so I’m kind of nervous to see him.

I am having the same symptoms as I did as a kid. Just much stronger now and lasting longer. When I took the paxil at 19 it worked relatively quickly, like within a few weeks and I had no side effects. This time the complete opposite happened.

@Onandon03 I don’t know what a migraine headache is. Of the people I know who get them it seems like an agonizing headache. Which I’ve never experienced. BUT it helps me to know many people don’t have the stereotypical migraine headaches and have mav.

I definitely have motion sickness and always have. As for hormones, I’m very sensitive to birth control pills and during both of my pregnancies I had constant nausea for 6 months. But post partum I was fine. And even now, when I went to see an endo bc I was hoping for a thyroid issue that could easily be treated he told me I was great and not in even Peri-menopause. I think for me, it was kicked off virally and then maybe the PPPD has come into play too. Although like @Amylouise says, treatment is same so it’s irrelevant which came first.

Thank you @Janb!


#17

Hi…I’m new here…trying to find a diagnosis for what I have…Ive seen an ENT who said I have labyrinthitis… its been 2 months and no improvement so I don’t think its that. Due to my insurance I have to see neuros in my plan. The ENT did say she was going to refer me to a neuro otologist at USC, so Im hoping that goes well. I was hoping to see Dr. Baloh and pay with my own money as I’ve read good things about him on here…if you do see him can you let me know how it goes…the appointment is pricey but at this point I just want to know what is wrong with me. Thank you.


#18

@SolarVivi who are you seeing at usc? I’m getting all my care there: gi, neurology and vrt. So far I’m very happy w the care I’m getting there. My neuro is Dr. Feigenbaum, I see her on Tuesday to discuss if I’ll be sticking w her or w the headache clinic or neuro-otology. I have an appt w the neuro- otologist at usc Dr. Oghalai on sept 10.

I’m really happy to “meet” someone in LA.


#19

@SolarVivi what are your symptoms?

Also if you are going to pay out of pocket for dr. Baloh it makes sense to have all your vestibular tests done through your insurance. He only sees patients through dr referral. You should have all those tests done regardless since your labyrinthitis isn’t clearing up.
Can your ent (is she at usc?) order a veng, impedance year and auditory exam? Those will show if your problem is inner ear. And then you go from there.


#20

“Year” = test