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#1

I’m a 30 year old male in the US.
I feel like it’s finally time to post since this has really been upsetting me since it has changed me. I apologize if this post is long. I have only received 2-3 migraines ever in my life until now.
I wish I could go back and avoid what I did cause I’ve been dealing with this issue since May 29 2017 partially on my own doing.
This all occurred may 29th (Monday) at night. It created vertigo/dizziness/imbalance since I took a THC edible which created for 6 hours or so of panic, anxiety and vertigo the entire time + threw up 4 times.
I stayed out of work the entire week and went to the doctor June 1st for dizziness, got antibiotics for 14 days and was told double ear infection and fluid in both ears (just examination, no tests to conclude infection). I was fine with antibiotics, could walk around at night no problem until the antibiotics were done, towards the end of the antibiotics I was getting some slight ear pain in both ears intermittently not at the same time… and it kept feeling like fluid was coming out of my ears. On 6/19 due to dizziness during work I went to my primary GP, prescribed 10 more days of antibiotics and said both ears were clogged. 6/20 is when the night time issue started of dizziness where I couldn’t walk around at night in the dark, I believe.
6/21 woke up with dizziness / imbalance, went to my primary GP and he said still double ear infection, and fluid in one ear … Saw my (ENT) 6/23, said no ear infection, no fluid and to stop antibiotics. I think, but can’t remember but sometime then my left ear started to block up/fullness.
Saw my 1st opinion neurotologist on 6/30, did hearing test/VNG, when audiographer put headphones in my left ear it felt very sore/somewhat painful. It was then I noticed the fullness in my left ear felt worse. Doctor said no ear infection, no fluid, possibility of MAV. This I believe is when I noticed the tinnitus in my left ear starting. This is also when I noticed at night when in the dark I’d see white noise.
July 1st watched fireworks at brother’s house and my left ear hurt a lot from the boom (about 50 feet away). Created vast amounts of dizziness/extreme imbalance which got worse after about 10-20 mins which occurred for hours. I ended up driving home immediately after the initial 20 mins which made me feel okay while driving, then when I got home an hour and 20 mins later I felt the residual anxiety/fear and the motion sensitivity.
After that I went to my primary GP for an MRI to ensure I had no issues like tumors, etc. Came back fine.
Went for a 2nd opinion. On July 31 My 2nd neurotologist doctor had me do the VNG like the first did but also a caloric test (air) was included. He gave me a huge packet on MAV and he also told me to try magnesium and B2. I tried both B2 and Magnesium that night and had the WORST vertigo like it was day 1 again of the full spinning. It took me about 7 days to fully recover again from that. Each day I felt like I was very motion sensitive and had to sleep earlier or I’d get even more dizzy. 1 week later 8/7 I visited my neurotologist and neurologist. The neurologist checked my caloric test and then said I had a slight weakness in my left ear by having me walk in place with my eyes closed and noticed I turned to the left. He also believes this is MAV and said to try the B2 again. He said the magnesium sometimes has an effect on people to give them vertigo. I had been viewing this website since sometime in Mid-Late July or so and realized there’s a lot of people with this. I asked the neurologist how long this will be and he said it will be forever. I said the site I visit there’s people with success stories. He said, I can’t speak on that matter. He wants to see my audiogram from the other clinic to ensure it’s not Ménière’s but does believe it is MAV. The neurologist said he would see me again in 2 months.
As of a week ago I was laid off from my job and I finally titrated to 400 mg B2 3 days ago. With each 100mg I went up I was very motion sensitive for a couple days, brain fog and just felt off.
I noticed as of a couple days ago to a week ago the intermittent pain in my ears that happened maybe 6-12x a day has decreased or entirely went away some days.
Today, 8/19, tonight I was out at a brother’s house and I was starting to get that anxious, fear, visual disturbance and as if the room wants to spin and as I walked it felt as if the ground was pulling back and forth. I got in the car and drove for awhile. I feel at ease as I drive while in motion even if I have the anxiety feeling. I don’t notice any shifting.
I guess I don’t have the true vertigo of the rooms constantly spinning like I have read about, but i get the feeling of the room wanting to spin, the fear/anxiety and the motion sensitivity. I noticed taking a shower is not a fun task either cause if I’m feeling motion sensitive it picks up immediately and feels like the walls are topsy turvy.
I’ve attempted the migraine diet as of 2 weeks ago and now doing the B2 as well, but still feeling a bit off.
I do remember I was waking up every night in July like clockwork around 1-2 am even if I went to bed at midnight waking up with an anxious feeling and as if the wall wants to twist but don’t. More a visual disturbance. The disturbances would occur for about 20 mins usually, so I would read on my phone (usually this forum), then try to go back to sleep after it eased. I did notice that my head is usually warm most of the time since the first occurrence now.

I want to be one of the people in the success story page to know I’m better because since this has occurred I haven’t drank alcohol, I stopped trying to date and I haven’t even gone out with my friends cause I’m unsure how I’m going to feel.
I feel at my wits end and helpless like I won’t be normal. People see I’m laughing and “managing” but I don’t feel like me. I’m not even bringing in money now to support my own self and my own place. This feeling is very scary.

I feel for all of you with this issue and would like us all to be in the success story section to know we can overcome.


Symptoms
#2

Where are you located? I have a great doctor who specializes in this if you are close.


#3

Also, don’t lose hope. My doctor said this is not forever and there are things you can do to help it “heal” so to speak. My story is long and I won’t go into it but I’ve been feeling better and you will, too.


#4

I’m in the New England area.
I did read that turnitaround said most people are 2-4 years.

And thank you for the reply.


#5

My doctor is in NJ. I don’t know how far you’re willing to travel.


#6

Hi

first: MAV is a condition that can last a long time or you can make full recovery (or at least remission) from. You can also see big improvements with this condition while still having it. Your doctor was a bit unenlightened to say it was ‘forever’ - I can see that would freak you out. you can also have it episodically - i.e. just from time to time. it affects different people in different ways.

secondly: if MAV is suspected, go see a MAV specialist. I’m in the UK so i don’t know who is who on the US East Coast, but i’m sure there are some good practitioners. I heard of one in Boston, for example. go see the best one you can.

Thirdly - you can get rid of the anxiety with CBT (cognitive behavioural therapy) which you can access anywhere through a reputable CBT therapist. the anxiety makes everything 10 times worse. if you can avoid feeling anxious every time you are dizzy, you will be dizzy, but not “dizzy + freaking out”. and that’s a lot better. eventually it will just become boring.

Finally - yes, this can impact your life a lot, but you can get through it, and lots of people get a lot better. accept that you have an illness, and try to find a plan to cope with it until you see the specialist and start a recovery plan, which most probably will include medications.

it’s not a nice thing to have, but it won’t kill you. keep positive, and good luck!


#7

Dr. Steven Rauch at Harvard is the best. He sometimes contributes to this forum. Make an appointment with him.


#8

I have a very similar story to you @Space_Cadet. I really feel for you, I’m only 20, and I’ve missed out on so much, especially the social scene of things. I’m in the middle of trying to get my college degree and this MAV truck bs is so difficult and a LOT more than meets the eye. I have found that exercising everyday, whether it’s a short walk, run, biking, whatever helps tremendously. Taking multivitamins everyday, omega 3 fish oils, and vitamin b12 for the cognitive deficits helps; also maybe look into getting some xanax for the quick pop for anxiety attacks or other daily anti-anxiety pill - it helps TREMENDOUSLY. I really hope you can find some relief. Don’t give up or lose hope, we will all have success stories and fully recover one day we just have to push through, and give it our all. We are strong. If you ever need to message me feel free!!

-Kelsey


#9

@Luclyd1,
Thanks for your input. NJ is a bit of a drive.
I’ll narrow down that I’m in central CT.

@gidlabu,
Thank you for that information. It’s nice to read that-- I would hope remission is the forever portion as we would all hope. I’m curious about the Boston doctor especially if he has a particular handling on VM. My only concern is $ without a job.
I’m familiar with the CBT of Yoga, meditation and that sort, which I have started to look into meditation. I do know that when I’m feeling the way I’m feeling now, I go straight to my comfort zones which are many places now. My bed is one. My car is another. But usually car to get to bed is best like in my case the other night where I had to leave my brother’s place. He was concerned driving was an issue for me since his father in-law has Ménière’s and he can’t drive. I told him driving is one of the few places I feel comfort.
Thanks again for your words of enlightenment.

@KBinNYC,
Thank you! I’ll take a look into him.
I’m hoping he’s able to add more input on what vitamins to take + more for a progressive resolution towards being 100%.

@kelxsea_1,
Thank you for your reply. At 20-- jeez, I was still in the military then and still learning so much about life and having fun. I’m so sorry you’re even going through that! I want to take your advice and start to work out again which I have been saying to people for the past year and a half. If you can do it then so can I. Like I was saying I mostly bring my dog for car rides during the day now which has been keeping me content and also not feeling stuck at home, plus she loves the car rides. I have been managing the anxiety of it fairly well now. More or less when it comes on I’m just like, “ugh, come on! Again?!” It does give me that psyched out feeling tho and as noted it said it’s close to your emotional portion of your brain, so it makes sense why I feel that sudden fight or flight feeling. The brain is quite a magical thing-- wish it didn’t get so easily disturbed tho!
I think realizing what’s to be expected or what’s happened in the past disturbances/imbalances has shown me I’ll make it through it and it’s a matter of finding somewhere safe to be just to ease it down and that letting time go by will subside that feeling. It’s always kind of not funny, but funny to get up after being in bed and saying, how do I feel now? Is it completely over for now? Then I walk around to check if everything seems straight and not slanted or “off”.

I have checked out Yale which is where I received that “forever” response. Being told to do the diet and vitamin pills and then check back in 2 months later just feels very-- not hands on. It actually bothers me. I know they can’t really do much, but 2 months later? I currently have no job and I’m chewing on my savings a bit at the moment before I start to collect and start job hunting again.
The past couple days have been okay-- afraid to say that since I feel I may have a bad day tomorrow (knock on wood). If I start to get dizzy like that other night I usually just go straight to my bed and try to lay down or read on my phone (which creates a close focus). I haven’t really put myself out there to trigger symptoms much. I was able to go to a concert in New York City a couple weeks ago which I was stoked about which I started to get the quick dizziness (2-5 mins worth) before the main person I went to see started. I just waited it out and it subsided. I also wore ear plugs as a concern of noise being too loud as a possible trigger. I was really concerned about it being dark in the concert cause that’s when I get the imbalance in the dark if I’m tired or it’s acting up. I also wasn’t sure if flickering lights would be a trigger for me now either since my brain has changed. Luckily flickering lights didn’t cause any kind of seizures or epilepsy.
Today: Went to see the solar eclipse today which was cool and I played video games for most of tonight and just now walked into my bedroom without dizziness in the dark, so that’s a plus.
I feel on most days I’ve been bringing my dog for car rides (the only place where VM has not effected me visually, but there was a couple times before it created that nauseous feeling in my stomach where I wanted to throw up but didn’t). I do notice after I stop after a long drive if my mind is acting up I’ll feel like I’m still moving. Quite weird.

Once again, thanks for listening to my rant everyone and thank you for your valid input. I appreciate it and I didn’t expect this many responses. It makes me feel wanted, welcome and surely not alone in this “battle”. You people are amazing.


#10

Well I’m glad you’ve been doing pretty well for the most part. I had a relapse bad yesterday while I was in Ikea with friends and had that whole disconnected feeling from my body. I’m not quite sure if that IS the “migraine” or what exactly. It’s the worst especially when it does not subside and you have to wait it out like you said, checking every once in awhile to see if your world is tilting or not.

And yes, it really is a great group of people. We all are here for each other because this MAV thing is awful! Optimism is key, but it really does suck. I hope we all get to kick it right in the butt and have smooth sailing. Good luck with everything and again, if you or anyone ever needs to talk or if you’re having a bad day shoot me a message or I can give you my email. Have a great day every one!


#11

Thanks for understanding!

I had that disconnected feeling yesterday.
I was doing well for about a day and a half. I thought I was starting to normalize and no tinnitus in my left ear while trying to sleep.

Yesterday I drove to New Hampshire (3 hour drive) and felt a bit off when I arrived at my friend’s house. Then after a couple minutes it subsided. Hour later, had some frozen packaged fish and the off / motion sensitive feeling kicked on for a good 10-15 mins or so. Once it subsided I left. Halfway into my drive I stopped for gas on the Mass turnpike and felt really off. I kind of had a fearful feeling that the world was going to spin (it was dark out by now (around 1030pm)). I pumped as fast as I could then got back in my car and drove where I felt comfort again.
Once I got home I felt a little off for about 2 mins then stepped in my place and felt better.


#12

@turnitaround,

I had a question about working out and headphones, previous to this exciting situation of dizziness occurring I used in-ear headphones. Now that I’m concerned of anything applying pressure to my ears or messing with my ears in general I’m curious about what you use.

As an update,

Early last week I set up an appt to see Dr. Steven Rauch at Harvard. The appointment is not until Oct 13, but hopefully sooner if someone cancels.

Last Thursday, 8/31, I decided to go to bed early but I was hungry because I skipped dinner. I was starting to get hungry as I was falling asleep (10 PM). I woke up with a very angry brain at 230 am and was quite dizzy/imbalanced/walls shifting and put into a frantic state of mind where I had very heightened fear and an impending feeling as if I was going to die. This feeling was much worse than I am used to. I haven’t felt this great a fear of feeling since July 1st. I quickly made oatmeal and I noticed I couldn’t be around the microwave because the noise was making it worse and creating more dizziness. I couldn’t have lights on either cause it was making it even worse. It was very scary! I had a bowl of oatmeal then quickly got to my car to drive, since being in motion while driving I have control and don’t notice any dizzy symptoms besides the nausea. However, at stop lights, or stop signs I notice a push and pull feeling. I drove for about an hour and a half then got home and was able to sleep after about 30 mins or so. I was slightly off more than usual for a couple days from that incident and learned my lesson on never letting my stomach get hunger pangs!

The evening of 9/4 when I was finally going to sleep around midnight which has now been my usual rest time I started to get a slightly off feeling. It took a long time to fall asleep and it started to get worse. I had to crack a door with a light on so some light would come into the room (sometimes trying to sleep in complete darkness now starts to give me an off feeling, I’m not sure how to explain it) but not too much cause I was starting to get light sensitive. Couldn’t have the overhead fan on because that would start to make me feel as if I’m twisting. I noticed laying down that my tinnitus in my left ear was getting even louder than usual. Also, my visual snow (thanks to a post on here since I was previously explaining this as white noise from a tv to people) I get in darkness increased in transparency to being even more visual. I finally fell asleep briefly but woke up at 230 am in a complete sweat and my head was very flush/cold and I was in a very frantic state and I couldn’t control that feeling (I hate when my brain takes over complete control). I knew I was having symptoms.
I was unsure why this occurred. I had white wine that night on 9/4 and I thought maybe it happened because of that (had white wine once before a couple weeks ago and fared well)? But I spoke to my father yesterday on 9/5 and he said he also woke up around 2 am and couldn’t sleep because of his sinuses and the pressure. A big storm was coming in on 9/5 and there was a lot of pressure throughout the day.

9/5 I noticed throughout the day I felt very off (more so than regular days) and my neck in the morning felt extremely tight / in pain! I tried to rub it and put ice on it which both created slight dizziness when I applied pressure.
I felt the swaying feeling when sitting at home as the storm was rolling in and my brain felt like it was being compressed.

9/6 - I noticed my neck now feels like it’s been bruised from the tightening of muscles yesterday. I still feel a bit floaty today since the storm had passed last night and the crummy weather is lingering around.

Does anyone else notice their tinnitus increases when laying down?
Does anyone else notice their symptoms and such increase at night?
Does anyone else wake up around 2 am every night sometimes with symptoms and sometimes not?
Is everyone with MAV a weather vane?

Thanks again for everyone who listened to my rant.
This has been hard with family, since some in my family are not supportive or say just try not to think about it, or easily discredit how I’m feeling or tell me not to mention how I’m feeling to them if I’m going through it while around them.


#13

Funnily enough I have not used any headphones for a few months as this DID cross my mind too and this has coincided with marked improvement of symptoms. I have no idea whether this is correlated, but if this condition IS due to a fistula you are best to keep movement of the ear membranes to a minimum so they can heal more easily. Your mileage may vary.

btw There’s a documented case of a fistula occurring on Dr. Hain’s site when patient “with a probable fistula related to rapid removal of an music ear-phone from his ear, with suction and hypermobility to the TM.”

https://www.dizziness-and-balance.com/disorders/unilat/fistula.html

My tinnitus doesn’t show much of a trend apart from getting worse after some meals but yes my symptoms worse at night. Used to dread going to bed. Now I’m only wary. Spinning usually occured in morning and almost always positional but sometimes I’d wake up at 2am with vertigo. Before I got full blown symptoms I had a strange summer where I would wake up at 3am for no apparent reason. I think it’s all head pressure related and this is worse when laying down especially on ones bad side.

Try eating dinner earlier in evening and see if that helps at night.

Amitriptyline really helped to dull the vertigo.


#14

I am unsure if it’s due to fistula. I had the leaking feeling in both ears from the start for a good 20 days or so. I still get it now sometimes in my right ear but very rarely. Any idea why that could be?

I was hoping to work out with headphones since time passes by much quicker with the entertaining distraction. Bummer to hear that.

Interesting article. Thanks for the share to continue learning about this.

Interesting symptoms. I don’t seem to be alone in that aspect then. I do dread going to sleep as of lately. I usually feel okay when first waking up though, as the day goes on is when the off feeling starts and then gets worse or much worse by night sometimes.
Whenever storms are coming in I get quite off, a little imbalanced, swaying feeling while sitting and some more than usual ear pain in both ears (like today again it occurred).

I ate cereal late last night and slept very well since the storm had passed and cleared, however tonight might be a different story since I already feel off and there’s a storm lingering due to remnants of Harvey.

I’ll see what Dr Rauch says for medicine once I finally see him. I wonder if he will prescribe ami or what he’ll even tell me.
I’ve currently only been on 400 mg of B2 since early-mid August and I noticed my ear pain intermittentancy has far reduced or even stopped most days after a week or 2 of taking the full dose.

I want to include I started doing some neck exercises as well for the visual snow to reduce and I’m not sure if it has helped yet. I’ll continue to post in this thread with updates.


#15

I’m very passionate about my diagnosis and my personal theories but of course take them with a pinch of salt. However I don’t think fistulas should be so feared. You may get them through injury but they may also exist to limit the pressure in the ear to save your hearing. And the vast majority are meant to heal.

I cannot explain bubbling fluid like sensation in my ear any other way. I did not have it before my injury so it has a very obvious relationship to my condition. It also explains the episodic but rare cracking sound I rarely get when opening my jaw wide, as if the dried residue of this leak is being cracked within the eustachian tube. It may also explain why some people feel their tube is blocked some times.

I checked these symptoms with my ENT and he agreed with me these were in line with my diagnosis.

It may be fine for you and overly cautious of me. Go easy on the volume though in case.

It’s great that you are continuing to exercise. That’s really important psychologically as well as for your general health. We can all wrap ourselves in cotton wool or go out and fight. Experimentation and time will reveal the right strategy.


#16

Thanks. I used them 2 weeks ago when I finally worked out again and kept the volume low purposely not to harm my ears-- I felt fine after, just was unsure if there was any underlying damage from it or loss of healing progress from using in ear headphones.

I haven’t worked out again since that day since I’ve felt a bit off, but I want to start again. I did notice I have been losing weight by eating well now which is nice but I want to trim the fat with the exercise which is why I asked about the headphones question haha.

Thanks again for your posts!


#17

Hey- I hope you’ve been doing well than you have been a few weeks ago. Just letting you know if you haven’t seen already- check out my latest post discussion. You should check out if there are any available studies to participate in your area! If you need a link let me know. Things are looking up for us!


#18

Interestingly enough I too am a 30 year old male in New England who has the exact same issue

I’ve been seeing Dr. Priesol at Mass Eye & Ear - he’s one of the most knowledgeable doctors in the US on the topic vestibular migraine. If you haven’t found relief yet I’d suggest contacting Mass Eye & Ear and scheduling an appointment.


#19

@kelxsea_1
Thanks! I’ve been hit or miss. It’s like rolling dice every day. The vitamin B2 has been helping for my ear pain but sometimes even that fails.
I clicked the link and it asked for a login??

@BHMaloney
Thanks! I set an appt with Dr Rauch who also works in that same hospital. It’s not until Oct 13 though, unfortunately.
Does he prescribe you medicine and such or did he refer you to a neurologist? I guess that’s my concern, since that’s what they did at Yale. Saw a neurotologist and then he referred me to his neurologist.


#20

Unfortunately with this type of affliction there is a tendency to get bounced around from specialist to specialist as most doctor’s dread hearing about non-specific dizziness (they don’t know what to do/how to diagnose it)

If you’re going to MGH you’re in the right hands. I’ve heard good things about Dr Rauch. Personally, I discussed both medical and non-medical treatments with my Dr - started on the non-medical route (supplements and rehab) and progressed to the medical route. Am now trying to find the right balance of meds, but overall am feeling way better than when this first started