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

Yep, it's like my whole thought or focusing process is blown. What's weird for me is it seems to be worse with my right eye than left. It gets worse as they day goes on and my eyes hurt or burn at times. Optic neuritis is something I've brought up to my neurologist because it matches but he says no. You're not alone in these symptoms. So far, it's identical to mine

Wow. How strange I totally felt I was 100% alone with my eye issues. Describing it to my eye doctor and neurologist is so difficult and they just don't get it. My neurologist was wonderful and I say was because I've pretty much quit seeing him. He just couldn't do anything else for me but he tried that's for sure he done all kinds of tests and scans and blood work and even pulled fluid from my spine to test and checked my spinal pressure. He also put me on magnesium and fluid pills. I took the magnesium for a period of time then just stopped. It was just otc vitamins. 

Since your post about hypomagnesium I've been reading about it and it sounds a lot like my issues. I have had lots of blood work and tests ran but I don't believe I've had my vitamin levels checked. I'm going to schedule and appointment soon to be referred for my neck and I want to have blood work to check my magnesium levels. Which doctor did you see to have that tested? Your neurologist or primary ? Also if that fixes it which I hope and pray for you that it does when will you see improvement? 

I used my GP for blood tests. The time frame for improvement can take months. It takes a while to settle in. The magnesium ion test is the best one to take for accurate levels. Skyler feel free to ask me or chat anytime . I answer quick on here. It's great to share ideas as you never know if someone can help others. I have a 10 year old son and can't do as much as I wish so I understand the family issues too. Keep me updated and I'll do the same.

Thank you Jeremy, so much you've been extremely helpful. And I agree others ideas/experiences are very helpful! Finding this site has been pretty comforting. I will definitley keep you updated. I am definitely calling my doctor for an appointment as soon as possible. I hope you get better as each day passes! 

Yes keep us updated Skyler.. I’ll do the same. So you’re going to your primary doctor?

Yes Vanessa it will be my primary dr. He will do my blood work himself I'm sure them refer me to someone for my neck.

My problem is i hv alot of multi symptoms to tell dr, and to me dr cant handle that .now if u tell them 2 thgi ts ok ..i had eye pressure released . i kept trying to explain to Doctors but cant . I would have pain way behind my nose but not sinus pain i told him its like a localized pain then it radiates .i get so upset due to not knowing how to explain to them .

Low Ferritin will still cause symptoms.  At 7 that is extremely low.  Once the Ferritin levels are depleted it starts to cause anemia.  You can have low Ferritin and not be anemic.  The symptoms of low Ferritin are:

unexplained fatigue

dizziness

chronic headaches

unexplained weakness

ringing in your ears

irritability

leg pains

shortness of breath

Mine was at 9 when last checked.  I am trying to get it up to 60-70 range.  My Serum iron is 31, should be around 70.  Most doctors do not check Ferritin levels or Serum Iron.  Most just look for anemia without looking for underlying issues the other two can cause.

Low Ferritin is usually a result of ome ongoing bleeding, GI bleeding anr heavy menstrual periods for women.  Mine was the result of GI bleeding.  It only takes 1 tablespoon a day to deplete the stored Ferritin levels.

Certainly something worth considering.  

Normal Ferritin level for a woman is 20 - 200

Carla,

I'm so sorry you're going through this. It's terrible. And honestly that's exactly what I've said several times it's hard for people to understand because when they look at us we look fine. Even going to the doctor so much and never finding a problem makes it also look like we aren't okay or it's "in our head". It's crazy how something so life altering can not show on the outside or even show on tests. It's extremely frustrating. 

I've see where a couple women have experienced these symptoms after having a baby and I wonder if it's coincidental or if we have something in common. 

Also my main symptoms are my eyes it awful. I do experience head pressure not everyday but on bad days. My ears have never bothered me.

Do you find that days where you have increased head pressure are associated with changes in barometric pressure?

Hey Skyler

I honestly believe that extreme stress and the accompanying weakened/compromised immune system brings on illnesses such as these and many others as well. I was told vestibular neuritis and labyrinthitis come on as a result of a virus which attacks certain parts of the body under stress.

Just curious... does anyone feel pain in the any lymph nodes? Usually one specific area right behind my left ear has constant (pinching??) pain. not large but very hard when touched and painful most of the day. Its definitely a reactive node and I am absolutely sure it is related to whatever illness I have but just wondering if anyone else feels any pain in lymph areas (e.g neck, armpit, groin, belly button etc.)  

Terry,

I have actually never even paid attention to it. Never even thought to. But that's a good question. 

What about you have you noticed it?

Very interesting. 

I do always feel some type of pressure in my ears.. I feel like I’m at a high altitude.. I had all kinds of test ran by my ENT and he can’t find ten reason why.. he said I should maybe try Flonase but my nose isn’t stuffy.. I must admit when I pop my ears I can think a bit more clearly 

Did admit you?

Hi terry thankyou for your reply and advice had my bloods done yesterday so hoping it's gone up a bit but just seem to be feeling worse the last few days my legs have felt heavy aswell I also suffer with tinnitus in my left ear my ears have bee n checked and doc said all looks ok apart from a little wax also my neck always feels achy not sure if this is conected or not x

Hi skyler sorry you are going through the same it really is awful and even worse when you have to look after children ....does yours ever feel worse in the evening at all or if you are more tired mine is really bad today as I've not had much sleep I have a poorly baby I can just about stand up my eyes are heavy and stingy ...x

Hi Vanessa I used to get that feeling of blocked ears on and off and thought my ears were to blame for my balance problems I started putting warm pure 100% extra virgin oil in my ears to help unblock them worked wonders but still have the balance problems and been told my ears look healthy x

Yes, changes in barometric pressure cause my symptoms to ramp up.  I keep a watch on the barometric pressure each day and of course we always know from the weather reports when a front is coming through.  Barometric pressure changes is one of the things that add to migraine activity.

I also believe that once stricken with whatever this is that we have to be viligant and ensure that other things don't add to and compound whatever the root cause is.  Everything has to be in balance.

I use Flonase every day along with Claritin.  My Neurotologist told me, when it first began for me, that it takes just a minor change in the fluid level to create issues once you have a damaged vestibular system.  I also have to take steroids 3 or 4 times a year.  When it first began for me the steroid dose pack is what cleared my head of the fog/derealization feeling.  I have no cognitive issues now.  Just a spacey issue at times and that creates nausea.  The steroid is also what finally made my ear feel unstopped.  I can get motion sick in a vehicle now where I never had a problem with that before.  Just the slightest sinus issue will tip the cart so to speak.  Sometime in a store I have no issues and other times I find that they make me feel like I'm in a snow globe.  I actually have some type sinus issue going on now and am about to start a steroid dose pack to see if it will clear it up.

My neck always hurts as well.  I think that is the stress that the balance issue places on the muscles.  It all works together.  Deep needling, something like accupuncture, is what was able to get that under control for me.  Some form of needling and massage will help tremendously.  The symptoms of the illness are truly cyclical.  That's why I believe that we have to keep everything else in check in order to limit the compounding effect. 

Hi Terry, so do you personally think that the reason for all of ur symptoms is the ear, vestibular nerve damage?  My ears feel clogged time to time. And when i feel this pressure in my ears, it comes along with derealization   ! Just like you are i cant seat in the back of any car i get so motion sick, nausea headache. So i am sure my vestibular is all messed up. And neck hurts probably due poor balance and dizziness. Body gets tense and takes an affort for me not to fall. That's why muscles hurt.  ENT  said its not my ears, can i ask you what Dr prescribed you the steroid? And is it an injection? I wish i could get that too!

My issues began with severe vertigo followed by months of dizziness, foggy head, derealization, nausea, balance and spatial issues.  From my research the spatial issues are a result of the damaged vestibular-occular reflex.  The other issues were a result of labrynthitis, which damages the vestibular nerve.  The amount of recovery is proportional to how well the brain re-compensates for the damage.  I have found that issues related to pressure, fluid or just pressure, increase my residual symptoms.  I went to an ENT yesterday as I have been dizzy more than usual for the last 4 or 5 days.  There is no fluid build up but, he, as well as me, assumes that the eustachian tube on my left side is inflamed causing added pressure on the inner ear creating the dizziness.  Barometric pressure changes cause issues for me since my vestibular system cannot effectively correlate the air pressure change between my inner ear and the vestibular-occular reflex.

What I also find is that other areas having issues will exacerbate the permanent symptoms from vestibular damage.  What I mean by that is if I have a sinus issue, low Ferritin levels, barometric changes, stomach virus, stress, overly tired out, etc. it places stress on my damaged vestibular system that manifests into what seems to be new or ongoing issues.  When I experience these symptoms it brings back memories, or fears, of the initial months of suffering and that amps up my anxiety level which in turn then also adds to the symptoms.  It can become a vicious cycle.  I am, after almost 4 years, 90% to 95% recovered and function fairly well.  Since I have identified my low Ferritin issue I have been taking a prenatal vitamin for the iron to try to get my levels up.  Straight iron is hard on the GI track and I cannot take that so I opted for the prenatal vitamins.  Since beginning them I can honestly say that I believe that I am seeing some more improvement in the overall issues that I still experience.

The steroids that I have taken have been in both forms, pill and injectable.  The pills have a longer lasting effect.  The shot is faster acting.  I have been prescribed them by my GP, Neurotologist, ENT, and a family practice doctor at a walk in clinic.  My GP actually gave me a prescription to have on hand where I can get it filled 3 times.  You just have to be careful with steroids as they weaken the immune system and should only be taken 3 or 4 times a year.  I monitor that closely as to not create another set of issues for myself.

I have also done deep tissue needling and deep tissue massage.  Those help to eliminate the neck issues for me and that in itself helps to alleviate some of the perceived symptoms generated from the muscles.  It is all connected, muscles, eyes and vestibular system.  All send signals to the brain and the brain tries to mesh all of them together to determine the bodies position in space.  If any of the signals differ the brain doesn't know which one to interpret and listen to and that in turn creates the symptoms of imbalance and altered spatial awareness.

Doctors cannot see vestibular damage and if nothing shows up on a test they think it is anxiety related or that it doesn't really exist since we look well.  I know that added pressure on my inner ear, as I mentioned either fluid or just air pressure, creates issues for me.  I also know that added symptoms also create issues that I did not experience before this all happened to me.  I had a similar issue occur 12 or 15 years ago but, I fully recovered after 3 or so months with no residual issues.  So, I assume that this second occurrence created more damage and the brian has been unable to fully compensate this time.

Long winded answer to your question.  If you haven't seen a Neurotologist, that is who specializes in this type of issue.     

Absolutely!

Thank you so much Terry for all of this information!  Looks like ur ENT Is a pretty cool Dr. Coz mine (since i been there 3 times ) can not stand me anymore. As he thinks there is noth wrong w my ears And for some reason here in South Cali , i cant get a refferal easy to a Neurotogist specialist! As a matter of fact i can not get any referral easy besides a psycologist , lol or psychiatrists those are straight away, With an antidepressants prescribtion . 

Huh?

Terry, so which is the doctor that diagnosed you with the vestibular thing.. neurologist or ENT? I  need a 3rd opinion from an ENT regarding this ear pressure I get on and off..

The last ENT I saw was the one that suggested I maybe use Flonase but I’m scared of getting addicted to them nose sprays.

I’m glad u feel better and have found something to make u feel better..

I’m still in search of what makes me feel this way.. My symptoms have their high and lows.. last week was bad.. this week not so bad but it still hasn’t gone away.. today I’ve been very sensitive to light.. not migraine status BUT I’ve been squinting a lot do to the lights.. especially in the evening time when I’m driving and cars have their lights on.

Oh, sonwhich doctir prescribed the steroids and why?

Who checks to see if your vestibular is ok?? Is it ENT..? I’ve seen two.. idk if they checked for that or not.

The initial visit with an ENT diagnosed vestibular neuritis.  The follow ups with a Neurotologist and Neurologist confirmed vestibular neuritis.  My GP prescribed steroids, 20mg per day for 10 days, when I first saw him shortly after occurrence and this is supported by literature, I have read, along with the addition of an anti-viral in most cases.  The Neurotologist that I saw followed up with a second round of steroids 6 months after I was first hit.  He actually mentioned an "intratympanic steroid injection" but, I didn't want to persue that approach.  This is where they inject steroids directly into your middle ear through your ear drum.  Thought being that it gets the steroid directly to where it is needed and in a large dose. 

I can understand about the nose sprays but, nothing that I have read indicates that Flonase is addictive.  It is a steroid spray that prevents the release of inflamtion causing substances in the sinuses.  The best doctor to see for inner ear issues is a Neurotologist.  They are physicians that specialize in inner ear issues.  An ENT is a waste of time in my opinion.  The one that I see is only for ongoing sinus issues but, he will listen to my concerns and has an open mind.  The Neurotologist that I see is 3.5 hours away.

Thanks Terry. Yes, ENT was a total waste of time! Ugh.. it’s just getting my primary doctor to send the referral is what’s annoying.. but I’ll try..

What’s a GP? Lol

The weird part is the ENT and neurologist have ran soo many test.. if I had vestibular neuritis wouldn’t it have been discovered by now? My ears do feel pressure in amd off through outbthe day or week.. when my ears are clear my brain fog is gone! 

We need to see a neurotologist as Terry said. I agree that ENT is  a waste of time. But i guess Ent is the one who reffers u to a neurotologist, or may be a primary Dr can do it too!  And i am glad to hear that Terry feels 90% back to normal, after 4 years.. coz it gives me a hope!!!! For some reasom i hv that gut feeling that this is all due my inner ear nerve damage . I wont deny i get depressed sometimes. But it is not easy to be swaying , 24/7 with pressure in ur eyes, and ringing ears!  I just hope that brain can compensate and relearn ! Keep me posted Vanessa !

I'm assuming that "South Cali" is California.  With the way that health insurance is I know that it can be hard to get to who you need to see.  One of the best centers in the US for inner ear issues, the House Institute, is actually in Los Angeles.  A different Neurotologist that I am going to see after the first of the year actually trained there.  I'm fortunate that with my insurance I can self refer to anyone that I want to see.  ENTs are a dime a dozen so you shouldn't have a hard time finding another one that may better serve your needs and have a more compasionate ear.

I am amazed at the doctors, that believe that since they cannot see anything or can't effectively diagnose this issue, wanting to so quickly write it off as an anxiety disorder.  I never discussed that side with them for fear that just that is what would happen.  If you have never experienced this stuff you cannot understand that it is the symptoms that drive the anxiety, not the other way around.  I totally agree that anxiety created from the symptoms make them two fold worse but, I will never agree that the anxiety is what causes them.  If you have never suffered with this you cannot understand or relate to how I am telling you that I feel and you cannot understand or relate to what I tell you are my symptoms.  If you tell another sufferer they will understand fully regardless of how you describe it.

A vestbular issue is diagnosed with a test called a ENG, a VNG and a Caloric test.  You would certainly remember if you have ever had one of them.

Yes Terry the Caloric test i always wanted to do, as i researched ab it all . And when i read what u write i can see that u been reading all ab vestibular disorder, i can certainly see u been throught the same pages and websites i been through in this 2 years.  I can see how much knowledge u got by now. And thank you for the tip ab the house institute in La. i am not too far. Reading u is so comforting because i can tell we deal with the same issue. Sorry for my mumbling second language  

A GP is just a General Practitioner.  Same as what you call your Primary doctor.  Most ENTs, unless they have a specialized interest in inner ear issues, don't have test equipment for vestibular issues.  Look up on Google ENG, VNG and Caloric and you can see if you have had any of them.  My Neurologist was a waste of time as well.  He simply ruled out MS and said it was vestibular neuritis.  I saw 3 ENTs before the one that I use now prescribed vestibular rehabilitation therapy.  Could be that ear tubes might help alleviate some of the problems.  Something is causing you to feel the pressure that you describe.

I mumble and can only speak 1 .  I am always happy to share from my experiences and what I have learned by researching and my own personal experience.  I am a long way from where this all started but, I want to get back as close to 100% as I can so, I'm still searching as well.

Carla,

Wow, we have very similar symptoms. My symptoms definitely get worse in the evening and when I first wake up as well. It takes my eyes and head a good 45 minutes to "wake up". Once I get out of bed my head feels funny hard to explain but it's like pressure (doesn't hurt) just an odd feeling. And my eyes are terrible my vision is foggy and disrupted and I feel very out of it. That also happens a lot in the afternoon. I have derealization/depersonalization mostly in the mornings and evenings. And also my symptoms are a lot worse on days I have I didn't get enough rest. 

Your eye issues are they vision issues as well or just like pain/pressure like? Forgive me if you've answered that before my memory is so bad.....

Different lighting really messes with my eyes. I have vision issues 24/7 which is really scary. Some days aren't so bad. 

Terry,

I couldn't have said this better myself. I have had almost EVERY single doctor I have seen the past 14 months tell me its anxiety once they can't figure it out! It's extremely frustrating and I as well try and watch what I say so that they give me the time of day without immediately writing it off as anxiety. And with this starting 2 weeks after having a baby that's the FIRST thing people say and I'm like you just don't understand. And you won't understand. If you could just have my body for one day you wouldn't say it's anxiety anymore. It's so nice finding people who understand because everyone around has no idea! 

Terry, 

I'm definitely going to keep a watch on the weather and see if it causes my symptoms to worsens. Over the last 14 months I have tried to find a pattern in good/bad days. Some days are just awful and some days are okay and then there are days where I see so much hope that I'm getting better than bam back to worse. 

Yes I definitely want to see what happens with that.. can’t hurt by trying.. it gets us closer to what’s causing this chaos in our bodies.. I’m glad I’ve found y’all..

Lanvyn, if u don’t mind me asking what part of Cali are u in?? I’m near Los Angeles.. 

you should message me so we can keep in contact from time to time.

I will definitely keep y’all updated.

I’m curious to know the cause of all this..

Like I previously mentioned.. there are times it’s super manageable and other times it’s so bad I feel so drunk and tired.

You are the first person that I have spoken with that related the sudden hunger urge.  I have that sometimes and it is like I have to eat and have no choice.  I used to be able to feel hunger and put it off if needed.  This just happens occasionally.  One thing that I would not overlook is the possibility of migraine.  Migraines can happen with or without pain and it is documented that some women develop them during pregenancy due to the dramatic hormonal change.  Once they start the brain sometimes cannot break the pattern and medication has to be used to reset the brain.  So many of the things that you guys have mentioned are things that I have seen that are associated with migraine.  Barometric pressure is also a contributor to migraine, it's not just about what we eat or don't eat.  The associated pain with migraine can also be in the neck.  Just a thought.

You guys have a good group discussion going.  Please continue to share the results on this forum of what you find and what you try.  It's all about helping each other because you will probably never find that perfect doctor that will make these recommendations to you.  They want to see you for your allotted 15 minutes, give you a prescription for some pills and send you on your way.  Fellow sufferers have a vested interest.

Terry, 

It's very strange. I hate it when it happens I feel so unhealthy. I know so many people that can just go without eating if needed but now when I leave the house and know I'm going to be gone a while I always bring a snack bag just incase because I have to eat if my body decides it's time to eat! 

My neurologist has put me on a couple different headache meds to take daily but I never really took them like I was supposed to because I just didn't feel like that's what was wrong. I have a history of headaches/migraines I had MRI and CT scan when I was only 13-14 and was put on daily meds. As I got a little older I didn't really need it anymore I went from headaches daily to about 3 a month. 

I just don't understand a migraine lasting 14 months but honestly I would give medication a shot again if it would fix it. Do you know the names of any medications for that? 

HI Skylah, I have had so many symptoms similar to you for the past 8 months. The vision fog/haze is constant and I have trouble focusing at times. I get left eye pain which seems to be getting worse. I have occasional general head and neck pain, dizziness, but my eyes are the worst. I have had them tested a number of time and my vision is apparently fine, just a slight short sightedness starting to show up which is normal for someone my age of 42. I have never had migraines before but both my sisters get episodic migraine so it is in my genes. The 3 different Neurologists I’ve been to have tested me for MS, Bell’s palsy, other neuro disorders and autoimmune diseases and have come up with nothing. So the diagnosis is migraine. It seems really odd to me that a migraine can be a permanent state for the last 8 months but as Terry mentioned, it can be a cycle that cannot be broken for whatever reason (hormones, peri menopause, TMJ??) My current Neurologist is a headache specialist and she tells me that she sees many patients (mainly women - which again points to hormones) who have constant headaches or pain which is considered chronic migraine. She has tried me on Amitriptryline (made me too drowsy), Propranolol (beta blocker) and Nortriptyline. The Nort seems to help a little with some of the head pain, but I’m not convinced that it does much else. It is so hard to know what works and what doesn’t as I’ll have a good day and then the next day I’m really bad again. I’m also taking herbal supplements such as BioQ10, fish oil, magnesium, B2 & B6. I am going to try Feverfew next as I’m going off the Propranolol because it doesn’t seem to be working. I am in Australia and apparently to have Botox injections funded partially by the Government, we have to have tried at least 3 preventatives first and have been on them each for a few months. It’s a constant battle this illness and it’s one I struggle with everyday 

Omg Vanesse i am in Oc irvine.! Lets meet up!!! I will come to ur area if you like? Or u can come visit me here!!!!! To be honest i am desperate to hang with smb like i am ! Just to talk and we both have kids! can u private msg me pls? 

I feel the same . Do you think more clearly while sitting ? 

There are several that they try for migraine associated vertigo, Topamax, Amitriptyline, Nortriptyline, Propranolol, Altenolol, Imitrex, Effexor, (there are many). 

Have u ever felt like u cant focus with vision

Hi Skyler!

Hope you’ve found some relief with your symptoms.. 

I just wanted to share how I have good and bad weeks too..  last few weeks I’ve been good thank God. But prior to that.. for two weeks  my symptoms were bad.. I felt super drunk... right now I’m good but I need to keep up with Acupuncture and massages. 

If I do 2 massages per month and 1x acupuncture my neck feels great.

I’m still trying to figure if all this is related to my neck or if it’s coukd possibly be we females feel this way during ovulation or that time of month.. 

Just wanted to share.. 

I totally understand where your coming from and I'm sorry your going through this. It is EXTREMELY frustrating. I haven't been on the past 11 days I've been so busy and since experiencing this busy days are hard for me to get through. My symptoms have been very bad this week. What's weird is every single month the time of my monthly my symptoms are at their very worse. 3 days ago my eyes and derealization got very very bad woke up the next day to my monthly. I can always tell when it's coming. It's so weird but I've had all my hormones checked and everything. My symptoms are still there 24/7 but severely worsen when it's my time of the month. I've also had a cold this week and it makes things so much worse makes my symptoms barely manageable at all my eyes are awful, I feel so out of it, extremely foggy, tired just the worst. And I as well don't see how you can have a migraine continuously for a year! My neurologist is clueless!

YES , always I have felt tat .