Losing my mind

1

first time writing. my story goes aa…

about two years ago I woke up feeling really off balance for unexplained reasons. it was not a vertigo sensation, however more of a feeling of the ground moving under my feet feeling. it was scary. I felt I was going crazy. prior to that horrible morning, I was an dedicated runner, running about 3-5 miles a day before work, then going to the gym to lift weights, and heavy weights at that. I thought to my self maybe I caused an issue with my heart. So began my medical journey.

first I went to my general practice doctor, he did a full blood work test, came back everything was great. from there I decided to go to a cardiologist, they did an ekg, everything was fine the doctor said, ( that was my second ekg form a panic attack that caused me to go the emergency room earlier in that month, which was also fine). From there, I went to a ENT doc, they did a hearing test, and some positional head movements which didn’t cause me to feel any type of dizziness, so they said I was fine. at this point me hearing that im fine was starting to create more panic, because I wasn’t. lastly I went to a neurologist. the neuro said I was great but give a shot at cleaning your ear. I forgot to mention the entire time I was going through this I had a sensation of fullness in my right ear. I cleaned my ear, and after about two and a half months I was feeling GREAT!!!

However for two years I would receive small bouts of feeling off balance but it did not affect my everyday responsibilities so I dealt with it.

I went to San Fran and it resurfaced, I went to a doctor there and they did an ear arogation on my right ear and I seemed to be ok.

about three weeks after that point it came back with vengeance
I returned home back to Washington DC on sept 1,2016 and life has been hell. symptoms since then varied from my first attack. symptoms follow as-

  • aurora vision changes lighting bolt in both eyes
  • sensation of body feeling really heavy
  • sensation of gravitational pull towards the ground espacially when awaking in the am
  • tension/lightheadedness on back of neck and head with pressure around right ear
  • sever leg weakness / jelly legs
  • sometimes feel that I could pass out, however never happened ( thank you)
  • sensation that the room is moving around me ( swaying sensation)
  • occasional heart palpitations
  • eye light sensativity/ eye heaviness
  • heart racing sometimes for no reason
  • sever anxiety and panic
  • brain fog

all these symptoms has cause multiple emergency room visits. even been kept over night for observation. this has generated a new medical work up where I was did a stress test that came back great, heart echo came back great, MRI with contrast on brain and spine came back fine, ent did three test on of the test called e VNG test came back abnormal on right side. Lastly, I saw a neurologist at John Hopkins university that specializes in balance and dizziness and he diagnosed me with MAV. he also said the results of the VNG test did not tell him anything which was weird.

currently my biggest issue is trying to accept this diagnosis, its hard and scary to believe that this MAV can make you feel these ways, for me I feel near death. It has broken my spirt and mind. I don’t have a handle on it, don’t know what makes it worst? don’t know what makes it better? im mentally plagued with the mindset that one of these doctors missed something and my life is in jeopardy. However Ive been to a multitude of specialist and hospitals and they all say the same thing " we can’t find anything" and then they say " hows your mental health?"

feeling hopeless
thanks for lending me an ear

2

Hey. Sounds a very familiar story. Sounds like MAV alright. Are you on any meds? You went to one of the best clinics so stay calm.

How did you clean your ear btw?

Don’t worry it will get better in time. Just get on the right med regime. Hang in there!

Best

James

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I really sympathise with you here because it is very very difficult to accept that a diagnosis of MAV/VM can be correct with all the horrible symptoms we experience, but rest assured what you describe exactly fits that diagnosis. It is a very difficult disease to understand and to come to terms with and it takes a lot of investigations to rule out other things before that diagnosis is reached, as in your case and with most of us here too.

Have you been given a plan of what treatment they propose to give you? There are several options and they too are trial and error because some medication works for some people but not for others, but you will find one or maybe more than one that works for you.

I know it is very difficult when you are scared and at the start of this journey but you need to stay strong so you can help yourself. Do you have another appointment with the neurologist? That would be the person to sort out your medication and to give you advice about diet as there are some foods which can make symptoms much worse like caffeine, msg, yeast, citrus fruits and many more. There is a book called The Migraine Brain which is available from Amazon which explains what is going on and is very helpful.

This is not an easy journey but this forum is a place where we help one another find answers and cope along with the correct medication. I hope you get the help you need soon. Feel free to ask us as many questions as you need.

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Yes defintely sounds like MAV…I too today felt like I was nearly going to pass out…was out metal detecting with my club …looked down to dig a hole nad found a large lump of iron - picked it up and started waking towards the hedge to throw it into and it felt like I wasnt getting enough blood to my brain - staggered alittle until I regained my posture…neck problems and pressure by looking down most of teh day seem to add to my issues…hope you can get the help you need…have you tried Propranalol - or other medications …if you can get the right medication you will be able to deal with daily life…

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Yep, you described just about all the same symptoms I have, and I was diagnosed with vestibular migraine about 5.5 years ago now (6 years of symptoms) by a neurologist that was seconded at Johns Hopkins in October 2015. I went to a neurologist in the vestibular clinic there. Did you go to the clinic or a separate neurologist at Hopkins? Did they do a rotational chair test on you?

The only difference is that my ENG test came back all normal, as well as all the rotational chair testing. My Hopkins visit supplied me with a detailed report of their findings (everything’s normal) and their medication recommendations. I’ve been trying a bunch of the medications but have had trouble staying on a lot of them due to side effects. But my condition is continuing to get worse and worse and I am really deteriorating, so I need to somehow find something that works soon.

I’m curious to know which medications they recommended to you?

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thank you to everyone who has responded and read my story. Some days are worst than others. I think no matter what . Im trying to keep a positive mind set. I will keep posting my events and experiences because there are some unique things I still continue to do despite having MAV. Like
running 3 to 5 miles 5 to 6 days a week ( which sucks), lifting weights and taking care of 5 children. Im currently on disability but despite a true progression in recovery, I feel like I will be returning to work soon. Which scares the dickens out of me. yesterday I took a hot shower that had me feeling faintish scared me really bad, anxiety had me feeling like my heart wasn’t beating right the entire day and feet went numb. but it passed after a cold beer that evening.

my next post will talk about the meds Ive been told to take.
thanks

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wow Jess
my test done at John Hopkins came back normal as well. To be truthful my experience was a bit anti-climatic do to the fact I was not seen unit feb of this year on an appointment that was made in nov of last year. I did the rotational chair test that seemed like a CIA form of punishment to get information from spies. The VNG test that I took was done by an ENT that came back abnormal on my right ear, however, the doctor did not know how to interrupt the data, he said it did not tell him anything.

he instructed me to take amitriptyline which made me feel like I was dying so I stopped. told me to try coenzyme q10, that I did’nt notice a difference in. Im curious to know, do you still work in your condition?

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I can still run, in fact running is more comfortable than walking.

I found success on Amitriptyline, a shame it didn’t work for you.

I think ultimately if MAV progresses to the point where you can’t use a computer, work is not possible, however, again the Amitriptyline allows me to use a screen for many hours a day now with no problem.

Keep trying different treatments until you find the right one.

There was one sufferer on here who recovered in 3 years without medication of any kind. His only ‘treatment’ after 2 years of lying around feeling grumpy was to get to the gym and within a few months of gym he started to feel better. Might be just co-incidence.

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how do your runs compare to before your symptoms ? for me running is a better than walking, but not great, I still don’t run like I used to. One thing I noticed, is that right after my run is done, sometimes it feels like I got hit by a train. the moment my run is over and im walking to cool down it gets really bad. I can barley feel my legs and brain fog seems to kick in, along with some weird anxiety. sometimes it can be scary.

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Health anxiety can be an exacerbating condition on top of the vestibular one. Anxiety reaction is hard wired in the brain to issues with balance so unfortunately you have to learn how to control your anxiety, but it can be done - my symptoms are better than they were a year ago but far from recovered but the one thing I have mainly under control is anxiety. You have to accept the dizziness and the weird new sensations and know they aren’t going to harm or kill you (although unfortunately the odd board member has fallen but thats not usual). But its easier typed than done. The thing that drives me the most nuts these days is my tinnitus which can be really distracting on occasion.

My running is almost unchanged in ability, you could say my walking looks no different. For me its just an internal discomfort others can’t see. Cycling and driving no issues at all. Other sufferers are less lucky, I admit. I think it may be because I’m ‘unilateral’ - my left ear is the only problem I have - some are less lucky and it affects both ears or some other issue is going on.

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how do your runs compare to before your symptoms ? for me running is a better than walking, but not great, I still don’t run like I used to. One thing I noticed, is that right after my run is done, sometimes it feels like I got hit by a train. the moment my run is over and im walking to cool down it gets really bad. I can barley feel my legs and brain fog seems to kick in, along with some weird anxiety. sometimes it can be scary.

12

Wow, I’m so relieved I’m not the only one feeling like these symptoms make someone feel like going out if their mind at times. I can totally relate to everyone on here that responded. Except I’ve had different doctors and vestibular therapist say it’s Mal debarquement or migraine associated vertigo. Dizzy feeling but with strange tilting.

Have you all felt like you’re rocking on a boat or walking, standing on a waterbed sensations? My symptoms are 24/7 for over 2 months now. I also have numbness in my right leg especially, and numbness in my outer right ear?!?
Melody

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Hi there! Your story sounds like almost exactly like mine…literally every single one of your symptoms. My issues came out of the blue 11 years ago when I was 29. It started with just feeling lightheaded pretty much on a daily basis, so I went to see a doctor thinking I had an ear infection or something. That appt. led me to an ENT, which eventually led me to see multiple neurologists, ENTs, etc. After the birth of my second child at 32 I started having migraines with aura…zig zag lights in my eyes, hard to get words out during attack, tingling and weakness down the right side of my body. I just turned 40 and I still feel very much like you do…scared and frustrated. I have learned to do everything I’ve always done even though I usually feel like I’m on a boat…I even continued running up until a year ago when it just became a huge trigger that ruined the rest of my day. :frowning: I’ll go months with just knowing this is my life and how I’m probably going to feel forever, but then I’ll have a month where I have more bad days than good, and I find myself worrying that this is something more than migraines. My fear is that something will happen to me…a stroke, etc…and that’s when my doctors will figure out there was more to this. But I try to remind myself that those thoughts are indeed just fears…not reality…so I try my best to keep my chin up and keep going. I have two children under 10, so I plan to continue seeing anyone that might be able to help. I know I’ve got to stay present and can’t give in. My best advice is to keep on going and relish your good days, and just take a deep breath and know the bad days will pass. This condition is super frustrating, scary, and depressing for sure, but I try to remind myself that others are dealing with life and death conditions. I’m here any time you’d like to talk! Finding this site and a MAV group on Facebook has literally changed my life! Being able to talk to others who are experiencing the same thing lets me know I’m not alone! Keep your chin up!!!

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wow thank you for the inspiration. I sometimes mentally feel like giving up. this will mark two years of symptoms for me on and off. this particular attack has been for 6 months. I need to find a neurologist in the dc area that has experience with this condition. I really appreciate your kind words again. Im a computer tech for apple and Ive been out of work for 6 months now. The company that issues my disability along with some doctors can’t understand how I can some how manage a 30 min 3 mile run vs. a 8 hour work day inside an apple retail store. Haven’t had the ocular migraines in a while. But I do remember those bright lighting bolts in my vision followed by a splitting headache on the right side. I only tried amatriptaline once, maybe I should give it another try. Can you describe your mornings to me?

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wow thank you for the inspiration. I sometimes mentally feel like giving up. this will mark two years of symptoms for me on and off. this particular attack has been for 6 months. I need to find a neurologist in the dc area that has experience with this condition. I really appreciate your kind words again. Im a computer tech for apple and Ive been out of work for 6 months now. The company that issues my disability along with some doctors can’t understand how I can some how manage a 30 min 3 mile run vs. a 8 hour work day inside an apple retail store. Haven’t had the ocular migraines in a while. But I do remember those bright lighting bolts in my vision followed by a splitting headache on the right side. I only tried amatriptaline once, maybe I should give it another try. Can you describe your mornings to me?

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thats terrible. Im sorry to hear this. we all feel your pain. I have more of a ataxia weakness/ body heaviness that sucks. more so right pressure and tension on the neck for me. what test have you had done yet?

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Did you mean mornings or medicines? I’m happy to share anything I can that might help!

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I meant mornings…

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Hi there! My mornings are fine for the most part, but that’s probably because I’ve been prescribed something to help me get a good night’s sleep and it’s still working when I wake up. My symptoms usually start getting worse as the day goes on, and if I’m going to have a bad day it usually hits around dinner time.

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Interesting. My day usually starts worse and improves until I’m tired at around 9pm.