Brain fog, dizziness, vision problems, head pressure, headache PLEASE HELP

Hi Jessica!

Thank you for reaching out to me. I live in the U.S. I also have tinnitus and a feeling of fullness in my ears that persists on and off. I always have a right and pressured feeling inside my head. I have had a history of migraines and my last migraine occurred in August. Has anything helped with your brain fog and feelings of derealization? What medication were you prescribed?? Thanks again!

Hi Elise,

I agree with Jessica, this could be MAV.  I was diagnsoed with VN but my consultant informed me that I am also suffering MAV so advised me to avoid the 6 c's (Caffiene, chocolate, cheese, citrus, claret wines and Chinese food).  I have avoided these for nearly a year and feel a lot better (although not totally cured i'm about 85%).

All the best for finding the answers.

Kind regards

Laurence

Everything you describe is exactly like my symptoms. The neurologist said that a history of migraines is often there with people who go on to develop  MAV. I personally hadn't had migraines but have had  Trigeminal Neuralgia and also a history of bad car and sea sickness which also are indicators.

He says the brain stem is irritated and the answer is to "stick plasters on it to rest it" in the form of medication and avoiding all the things Lawrence says ..most beginwith C ...  Caffeine, Cocolate, Citrus fruits, Chinese food ( msg), Chianti (all red wines), fresh yeast in fresh bread, marmite etc...

the medication I am on is Gaberpentin. It's taken 6/52 to accustom myself to 100 mgs three x daily and an about to slowly add 100 extra. 

If you are on Facebook join these forums. Dizzytimes and Vestibular Migraine Professional . They are so helpful. I found my neurologist from there.  I wish you luck. It's so awful with no real dispagnosis. 

Hi Laurence!

Thanks for getting back to me. Did you suffer from my other symptoms I listed such as the derealization feelings and the strange visual problems? Were you also on medication or just avoided those foods? Thank you!

Hi Jessica!!

Thank you for the forums. I will join them on Facebook! Did you also have a strange sense of derealization like I described where everything feels off and you have mental confusion and haziness and disorientation and nothing "looks right"?? Thank you so much for your help!

Hi Elise,

Sorry for the late response.  Yes I have had visual problems, feeling of wanting to pass out, lightheadedness, stiff and painful neck, rocking sensations, word finding difficulty, foggy brain etc.  All this I am informed is likely assocaited with MAV.  I rearely get headaches though.

The main sympton for me now is the feeling of wanting to walk over to the left, this has never improved in the 2 years since getting the VN even though I do the VRT regularly..

Hope you find an answer , reading the posts it looks as though Dr Eleftherio has been helping you.

kind regards

Laurence

i have that brain fog / visually feel like im drunk but i can walk straight . 26 days ive felt this all started off witth me coming down with something i had fevers dirreaha chills now i just have this weird visual feeling and runny nose

Hi Dr. Paparhabasiou,

Thank you so much for responding! One ENT said he thought it was vestibular migraines, one ENT said it was anxiety, my general practitioner said it was vestibular neuronitis, and my neurologist is still up in the air and waiting for more tests to be completed for or against VN. Do you have any idea what these symptoms mostly sound like?? Thanks again!

Are you able to walk?  Are you able to sit upright?  Have you done an audiogram and caloric tests, and what were their results?  I am searching for clues.

Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiologist

Fellow of the European Academy of Neurology

I can walk and sit up right, although it's very exhausting and painful to do so because of the unsteadiness, lifhtheadedness, and imbalance. I did an audio gram with no hearing loss present. I did a caloric test and vng, and it reported a weakness on my left side. HOWEVER they used air instead of water, and every doctor had told me that using air is extremely inaccurate and even the healthiest of people could report a weakness on either side of the vestibular system

It is possible, though to difficult to confirm here, that you may have whats called otolithic hydrops.  This is something new, and your average ENT doctor may not pick this up.  Where do you live?  I want to refer you somewhere that has experience that includes this.

Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiologist

Fellow of the European Academy of Neurology

 

Thank you for your help and recommending a doctor near me! I'm in Illinois, kind of by Chicago.

Dr. Marcello Cherchi, MD/PhD, Department of Neurology, Northwestern University Feinberg School of Medicine, Chicago, Illinois 60611-5800, USA

Tell him I sent you!, and mention to him the possibility of otolithic hydrops, and to perhaps perform vestibular evoked myogenic potentials (VEMPs), a test that he also does that may pick this up.

Eleftherios S. Papathanasiou, PhD, FEAN

Clinical Neurophysiologist

Fellow of the European Academy of Neurology

That is very ironic Dr. Cherchi is the neurologist I'm seeing! I just had multiple tests done to determine VN and am seeing a behavioral optometrist next week to determine if there's actually an underlying eye condition. Then I'm meeting again with Dr. Cherchi and go from there to determine what my next options are or whether he thinks I have vestibular migraines instead. I will tell him you still referred him! Thank you so much for all your help!

Please let us know what Dr. Cherchi says.  There are a lot of similar symptoms that I see listed with so many of us that match vestibular migraine.  I have also read that it is sometimes hard to find the right medicine to treat the issue and some people end up trying several before they find relief.  There are a couple of other forums that I have recently visited that the individuals one them, vestibular migraine forums, list most all of the symptoms that we list and there are several with success stories through the right medication.  A lot of times the frustration is all of the differing diagnosis we get telling the same symptoms to different doctors.  However, I am a firm believer that if you have never experienced this condition you can never relate to what we are telling you (the doctor and family).

There are a lot of conditions that cause the same, or similar, symptoms and I guess it is hard to hit on just what portion of the balance system is causing so much confusion in the brain.  Cherchi and Hain are supposedly some of, if not the, best in the world for this condition.  Certainly regarded as the best in the US.

I've had whatever this is for almost 3 years.  Recovered to what I feel is around 90 to 95 percent but, the sensations still greatly aggrevate anxiety causing issues in fully being able to function.  Still not the person that I was or that I want to be, yet.

Hi Terry!

When I see dr. Cherchi again I will let everyone know what he says! The first time I saw him he said my symptoms all sound very complicated and that's why he doesn't have a diagnosis and why I've done VN tests and am doing other tests for my eyes.

One thing I'm frustrated about is that when I described my disreality/disrealizarion symptoms he said that people he has seen with VN or vestibular migraines do not have these symptoms. but now after talking with everyone on this forum is saying they have the same strange feelings of disconnect as I do! So I'm just worried he won't be able to properly diagnose me and then Idk what I'll do

Were you ever diagnosed? Have you tried any medication? What has helped?

Time is the only thing that has helped me.  I do VRT still and just recently had my eyes checked to ensure that my prescription was correct.  Was tested by an opthamologist early on to see if he could help as well.  The only diagnosis that I have ever been given is VN.  I believe that I display the symptoms of vestibular migraine but, there are so few doctors in the US that understand either condition.  I live in south Alabama and it is a long commute to find what we need in a doctor.

I tried a couple of anti-depressants to no avail but, that was on a recommendation made by me to my GP.  We shouldn't have to try to diagnose ourselves.  I had the disreality/disrealization, as you call it, in the first 8 months or so of my struggles.  That, and the brain fog, began to disipate about the same time.  I could not focus and could not see clearly with the prescription glasses that I had at the time.  As time passed my glasses became right for me again, though.

Someone can help you, just keep looking if Cherchi cannot.  The best rated Neurology center in the United States is the Mayo Clinic in Rochester Minnesota.  If I were close, that is where I would go.

Your first post describes my, and other forum members, beginning symptoms exactly.  One exception is that I also had vertigo and all that goes with it when it began full force.  Prior to the onset, about three months, I had momentary instances where I would just feel a tenge of being on the verge of dizzy and it would quickly dissipate.  Then one day I had a strange sensation as if I was in a daze, disrealization, and it would come in a wave like pattern every few minutes.  ENT told me he thought that it was from my having taken a Mucinex D earlier in the day when I wasn't feeling quite right.  About three months after that is when the vertigo hit.  Been an uphill battle ever since that day.   

Hi Elise ! Your symptoms are the same as me . Did you ever find out what it was? Are you better?

Hi Melanie! No unfortunately I have found no diagnosis and nothing that helps me :,( I just hit my one year mark of this awful problem. Have you seen a neuro-otologist yet?  

I am so sorry I really was hopeful! I am awaiting my neurologist appointment next month . Been like this for almost 5 months . I have had MRI of head and neck and VNG test and the ENT said he didn't think it was my inner ear. So here I am . Your the first one I have seen that shared my symptom of blurry eyes up close.so I'm kind of thinking we have the same. Have you tried any migraine meds? I'm wondering if I don't have MAV 

I am just about to try amitriptyline! Also take supplements of: magnesium, coq 10, b complex, and riboflavin. It's so hard to get a diagnosis of MAV. 

I did see a neuro optometrist who says I have a convergence disorder, yet it doesn't describe my symptoms, only visual ones. So it could just be a coincidence. Idk anymore very frustrating. Please see a neuro-otologist! They are a neuro ent and have a MUCH better understanding of MAV. 

I tried to private message you. Wow I just realized we private messaged 4 months ago. 

Hi Elise93,  have you tried a Chiroprator which specialize on  the upper cervical. Try google the info about the Atlas misalignment , i am just trying to help coz i  have all the same symptoms as u do will be 2 years in november, started with drunk feeling and derealization, dizziness, off balance , never fall tho. Pressure, pulling senssation, nausea, panic attack, coz of all that. Eyes are jumpy, double vision when tired, umfocused eyes, as if my pupils always dialeted, its 24/7 symptoms, i also noticed that when i am in the panick state, and my eyes dont feel right, i dont hv the dizziness, and if my eyes seem somewhat normal, and i have no anxiety then i get super swaying, like on boat, with weak legs, and just weird sensationa, i am only 31, and my life been a nightmare since all that started!