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

Elise, you need to investigate intracranial hypertension without papilledema. Have you been to a neuro-ophthalmologist? 

The next step is to get a spinal tap. Have you gotten a lumbar puncture that looked at opening pressure? It's possible you have elevated intracranial pressure WITHOUT optic nerve swelling. Most doctors do not know this even exists. From your symptoms, this seems like it could be a possibility worth looking into. 

Also, have you had a sleep study? You need to investigate sleep apnea. The best place for sleep disorders is Stanford. They test for sleep disordered breathing including upper airway resistance syndrome (what some call it) and this is important to also look into since not every sleep center tests for it, and it can cause symptoms. 

Are you on any medication? Have you considered this might be a form of VM?

HI alex! Thank you for the response. 

What kind of doctor can diagnose intercranial hypertension without papilledema? Sorry I’ve never heard of that, is it something in the eyes and that’s why you asked about neuro-opthamologist?  I saw one neuro-opthomologist but unfortunately made the mistake of listing one of my symptoms as anxiety FROM being sick so long, so he didn’t do any testing, spent about 5 minutes with me, shined a light in each eye, and sent me home :,( 

I have not had a lumbar spinal tap but that is definitely my next option!!! Can a neurologist refer me to have one done? I’m so desperate. 

I had one kind of sleep study where they’re just sent me home with a little thing attached to my finger. I really need a good complete sleep study because I’ve has severe sleep issues my entire life. Thank you so much for your help, I appreciate it so much 

Hi Jessica!!! Thanks so much for getting back to me. This is what I am soooooooooo frustrated about lol. At the beginning of my illness, one ent said you have vm, you have all the symptoms. Go see this specialist in vm. It led me on a wild goose chase with most doctors saying no vm only lasts a couple hours or a day AT MOST. Even Mayo Clinic said it can’t be vm because it can only last a maximum of a couple days. 

That really p****d me off because Ive MANY articles from doctors saying how complicated vm is, and how not much is known about even classic migraines, so it frustrates me doctors always steer me in the wrong direction. 

I do believe I could have a bad case of vm, but I have no idea the best treatment for it as no doctor will help. 

The only medication im on his Xanax. All it helps with us the severe swirling sensation in my head, and calms my head a little bit (any benzo is a central neevous system depressant as well as a vestibular suppressant so it calms the whole system down). However I am starting to get off it because I’ve been on it much too long and my body isn’t very addicted and dependent on it, and now my brain fog and derealization is 100x worse until I take it. So I’m sefinirelt getting off it and want to try and find a more long term permanent medication that can help with the dizziness and headaches and head pressure and visual issues and especially the constant dream like feeling. 

Hi Elise!

  I’m so sorry you still feel this miserable.

We share some of the same symptoms but not all.

I too have the derealization, brain fog, my left part of my neck hurts and it feels tingly, bright or dim lights bother my eyes, being in malls, markets and large crowds make me dizzy and over stimulate my vision.. sometimes (not as much anymore) I feel like I’m going to pass out and I feel weak.. a bit shaky... my symptoms used to give me anxiety (not as much anymore).. My eyes sometimes hurt bc they have to work hard to over come my eye situation.. I call it the “drunk feeling”.. I walk around feeling like I’ve had a shot of tequila (sometimes two at my worst). I still manage to go to work, be a mom to my toddler, and drive) some weeks are easier that other weeks.. I’m starting to notice I’ll be ok for a few weeks then boom, it hits me and I feel super drunk.. it last for a few weeks..

Two things that have helped my symptoms is 2 massages per month and acupuncture once per month.,, my acupuncturist usually works on my neck, head, and back. Them after she does cupping on my back and neck.,, usually l right after I feel the “drunk feeling” a lot but as the hours go by it gets better., the following day I feel like I can think better, I don’t really notice my symptoms too much., and I don’t feel the pressure in my ears (that I usually feel).

I’ve learned to accept whatever it is I have.. I look forward ten weeks that it’s not add bad.

I also have found that taking magnificent 250 vm vitamins have holes with my anxiety., I also take a multi women’s vitamin and I take a teaspoon of Comoressed Black seed oil.

I’m hopping to see a hollistic doctor.. I’ve been researching this one doctor near my area but my health insurance won’t cover it so I’m trying to save $$$. His name is Doctor Martin Randy.. he has a website you should check it out.. very interesting. He practices herbal Chinese medicine and acupuncture.

I wish you luck and always keep us updated please! I thank God for everyone in this chatvthat has shared their stories and ideas .

Here is a good website about intracranial hypertension you can read into:

http://ihrfoundation.org/

Intracranial hypertension is when there is increased pressure around the brain due to cerebrospinal fluid. It can cause a number of symptoms, including brain fog, fatigue, cognitive difficulties, headache, and more. 

A neurologist can diagnose it, but you'll have to find one that is willing to order a lumbar puncture. Do NOT mention your anxiety because that can make them dismissive. Also do not appear too overly emotional. 

That's a sad excuse of a neuro-ophthalmologist appointment. They didn't even dilate your eyes? How ridiculous. You need to make another appointment with a different one (preferably one in a University setting) that can perform more tests to make sure there isn't anything going on, even subtle. But even if your vision is normal and you have no signs of even subtle papilledema, you still need the lumbar puncture since intracranial hypertension can exist without papilledema although it is considered more rare. 

A home study isn't enough. I still recommend going to Stanford if possible so they can check for upper airway resistance/disrupted sleep. Sleep studies can be inaccurate due to the criteria used from the American Academy of Sleep Medicine. Stanford criteria is the best so far. 

So (1) you need to see a good neuro-ophthalmologist that will actually do thorough testing, (2) you need to find a neurologist that can order a lumbar puncture, and (3) you need a more thorough evaluation of your sleep (preferably Stanford) to make sure nothing is going on with it. I can send you links to research if you need it. First I would read up on intracranial hypertension. 

 

Ohmygosh that’s literally all my same symptoms too! I’m so light sensitive, I have to wear sunglasses everywhere. my eyes have trouble focusing and have visual vertigo. Stores and busy crowds are the WORST I feel so overstimulated and like I could pass out. My neck is in so much pain and so tight I can barely move it. I feel so drunk too! Or severely hungover. 

I’ve heard great things about massages and acupunctures. Thank you so much for the advice. 

What’s magnificent vm supplements? I’ve never heard of it. I’m so sorry you’ve been suffering so much too. How Long have you had this for? I’m so happy you can still work. I hope you find out what’s wrong and can see the doctor you want to! I will definitely look him up. 

Thank you so much for the advice!!!! I will definitely look into finding a neurologist who will do a lumbar puncture for me. 

Yes the neuro opthamologist was very upsetting for me, he didn’t dilate  my eyes or do a field vision test or anything. 

Is ir Stanford university hospital? I will definitely look it up as sleep is such a severe problem for me. 

Thank you for helping, you have no idea how m uh I appreciate it. I am so desperate for help and am so tired from being dismissed by doctors and just treated like a Number instead of a person 

Hi Vanessa

I had all your symptoms: brain fog, pressure in my ears, headaches, neck pain, drunk feeling all the time, anxiety in big stores with lots of shelves and bright lights....the list goes on and on. It was discovered the balance nerve in my left ear was damaged by a virus. It was called vestibular neuritis or VN. It lasted two years! Not to scare you...but i didn't start feeling better until i saw a vestibular rehab specialist. Hecwas patient and understanding and knowledgable about VN. I cried because finally someone understood!!! He taught me exercises to retrain my brain because all the symptoms represented my brain trying to figure out why it was getting mixed signals from a good ear and a bad ear. This guy saved me!!!!

You're very welcome! Good. 

That was a total joke for the neuro-ophthalmology appointment - quite pathetic and unprofessional in my opinion. Plus, anxiety and health issues are not mutually exclusive.

You're welcome! I understand. I'm in a similar boat and trying to get things figured out myself. I have had some similar symptoms. 

 Stanford has a lot of different things - including a hospital. https://stanfordhealthcare.org/

Hi Elise, 

so sorry to hear that you are not feeling better. I have been through the same things .. went from doc to doc, nobody was able to help.. MRI, ENT, have had an endoscopy etc.. plus  ER many times .. blurry vision, brain fog, my head felt  very heavy and not clear, tinnitus, not able to drive, almost fainting, nausea, thought I am diabetic, wasn't able to walk . panic attacks, shaking etc. But I knew it had something to do with a nutrient deficiency since certain things  seem to help but I didn't know exactly what and why. My blood work was ok, so the docs said I am fine - very funny since my symptoms were still there - so I thought I am taking things into my own hands and started studying nutritional science (what I can 100% recommend to anyone - or at least getting a book about it and read it..) And I can tell you that my life 100% changed with the knowledge I have gained. And to make it short and not to be rude since you are wrong on this one  : ).. fact is: All chemical processes in your body are dependent on what you are feeding your body. If even one thing is missing for a longer period of time your body can't work properly and starts getting sick. Every single cell in your body is dependent on the right nutrients! And the nutrients are working together - .. it's very very complicated - that's why your diet needs to be so balanced - we need it all - every single day. So fortunately it is that simple  - what you give to your body is crucial! And I am trying to open people's eyes so it is not so nice to point me out and say I am wrong.. W are living in a world where people are not eating right, are working too much and not exercising enough and sooner or later people will figure that out - but until then more and more will suffer from the same things and nobody knows exactly what it is.

I am more than happy to make a diet analysis for you and see where your deficiencies can be found. If you would like to write down 3 days what you eat (how much in oz or gr) and drink (without any supplements) I am happy to help. It was eye opening for me and my turning point, 

 

Wow.. it’s sooo crazy that we’ve been to sooo many doctors and NOT ONE can diagnose us.. besides them saying it’s “anxiety” related!!! I always end up arguing with these docs and they just don’t understand that my symptoms GIVE me anxiety!! Lol!! 

I meant to say, Magnesium vitamins lol.. sometimes I don’t proof read and just send. I take one per day, I believe the brand is Nature’s Best 250gm.. that has definitely helped with my anxiety. I also take compressed Black Seed oil.. I’ll try to post a pix of what it looks like. 

But by far the massages and acupuncture make me feel great! My symptoms are barely noticeable.. 

I just got my Acupuncture today.. she puts the needles on the side of my neck, in my ears and all around.. on top on my head, and face. It’s crazy bc as soon as she puts the needles in my ears I get very dizzy.. like dunk! Then it slowly goes away... she then out more needles on my stomach for my organs, legs, feet.. and stimulates with electricity only the needles on my stomach area (if that makes sense).. then after she removes all the needles she gives me a massage.. omg amazing. I feel great now!

Ugh isn’t it frustrating?!?! That’s literally what I say everytime! I’m like I only got anxiety BECAUSE I’ve been so sick and don’t know what’s wrong, I didn’t have it before! I’ve learned to just not mention anxiety now because doctors won’t believe you. 

I never proof read either it’s all good lol. I’m goinf to try and find or order some black seed oil!! 

What the “cupping” on your back and neck you mentioned? And your accupunturist does your massages too?? That’s so convenient! These are 2 things I’m most definitely going to start doing

HI Debbie,

How were you diagnosed with VN? How did they know it was your left ear specifically? Was it certain testing?  

Is a vestibular rehab specialist different than a physical therapist who can do vestibular rehab? How did you get referred to this person?

 I saw a physical therapist who gave me exercises to do at home but I never fully followed doing them at home bc we still don’t even know what is wrong with me and didn’t take the exercises seriously.  I have all the same symptoms as you’ve listed though! 

Thanks for your help! 

And the thing is, anxiety and medical conditions are NOT mutually exclusive. One can have an anxiety condition, depression, or any other number of mental disorders and still have an underlying medical condition co-existing and even interacting. When someone dismisses something as just being anxiety they are just too lazy to look any further. Plus, anxiety disorders are no joke, so if someone even dismisses anxiety as if it is someone's fault, they also have a serious misunderstanding. 

Yeah so for instance sometimes my neck is bothering me more, my acupuncturist will work on my back that day... she’ll focus on my neck, head, ears, and back.. she stimulates my back with the electric wires (or however that works) then after removing all the needles she proceeds to do the cupping.. she basically rubs my back with baby oil and begins the cupping procedure (you should YouTube it so you can get an idea of how it’s done). After the cupping she rubs my back and neck down with hot stones (amazing) and that’s pretty much it. The whole procedure takes about two hrs. D per session she charges me $75 ( not bad!)

I do it only once per month bc that’s all I can afford now, and I do two Swedish massages per month. I found this cool little massage school and the massages performed by the students are $25 per hr for a Swedish massage, most of the students are pretty great.

And as far as the magnesium vitamins and compressed Black seed oil.. I read they’re really good so I gave it a shot.. so far it’s almost been a yr since I’ve been taking them and I can say I see a small difference. It hasn’t cured me but it makes me feel a bit better. The Black seed oil gives me energy and has also helped my anxiety, along with the magnesium vitamins.

Hey Elise,

I'm sorry you haven't been able to find a cure, unfortunately that seems to be the issue for most people. You may have read, but I'm trying to find the source of our problems to see if we all have something in common. I don't want to pry too much, but I feel if we all find out what triggered us, we might get closer to a cure. When did you first notice yours symptoms? What came about first or did they all start together? Did something traumatic happen in your life? Had you been on ANY medication in the months leading up to it? Had you had an anesthetic?

I do not believe these symptoms are anxiety and depression related, I believe that anxiety and depression are a symptom of the illness.

I have all of your symptoms along with a whole host of others and I was triggered by an anesthetic the first time, which triggered severe anxiety, blurred vision, insomnia and that repaired slowly over a year and a half and then was triggered again by taking Beta blockers and very strong antibiotics, which caused dizziness, blurred vision, sensitivity to light, sensitivity to sound, derealisation, weakness, fatigue, memory loss, mental confusions, small seizure type things, headaches, etc etc etc the list is endless to be honest. I have documented when my symptoms started so I know they are related to the medication and I have done sooooo so much research I feel like I could train as a brain specialist now. I'm sure we're all like that on here now to be fair. So I'm trying to collect data to see what we have in common. It's important for us to find out.

Many thanks

Jess x

Hi Debbie!! 

Thank you for sharing with me and I’m glad you’re feeling better!  I will most likely look into this, how interesting! I have mist of the symptoms you shared except for headaches.. I have then here and there but not too often.

So you saw a Vestibular rehab specialist..? I haven’t heard of that type of doctor but I will talk to my primary doctor to see and he can put in the referral for me.. I have HMO health insurance and everything has to be approved

How did he test you for that or realized that’s what you had?

I’m in California.. which state are you in? (If u don’t mind me asking)

Like Elise said, I’m desperate to find a “cure”. All this  began happening after I had my son in 2015! It’s been in and off ever since.. it can be so debilitating at times.

This is so so true!!! I wish more doctors took it seriously and  actually cared to find the lot of the problem. I’ve completely lost all faith in doctors  

Hi Jessica! Please don’t feel like you’re prying, I’m a complete open book and will answer ANY questions to try and help people suffering with this awful issue. 

So I wasn’t on any medications or had any anesthesia prior to this. I wasn’t under some stress from classes (I was an accountantcy major so it’s difficult) But nothing unusual for me. I wasn’t anymore stressed than is normal. I was very very sick with some virus or bug, was healthy for a few days, then woke up on September 2016 one morning and this hit me out of no where. 

I woke up with severe brain fog and derealization. I looked around with my glasses on and something Just wasn’t right with my vision. Slowly that week all the other symptoms crept up: SEVERE brain fogginess and cloudinesss, SEVERE derealization and depersonalization, my vision became blurry and unable to focus on anything, I was seeing double, eyes aching, head aching, head pressure, when pressure, feels like I’m floating and head is spinning and in a washing machine or it’s storming in my head, feels like my head is a balloon floating off my body, body aches, skin and body odt feeling weird, severe dizziness, visual vertigo, insomnia, cognitive issues, flu like symptoms, I just feel off and not right, heart palpitations, chest hurting, weakness, fatigue, SEVERE sensitivity to light and sound, my vision is wavy like heat waves, my peripheral vision shakes all of it. I have so many symptoms. I cant do anything without sunglasses. I saw a vestibular therapist the first few weeks and she grabbed my head and shook it back and forth hard to check for nystagmus, and after that my eyes couldn’t focus together for weeks. Everything was double vision and it hurting to even open my eyes. 

For a while my left side of my face and mouth and cheek and eye would go numb and tingling and my vision was very disturbed for a while. 

I had to a Wear a very very very old prescription for my eyes the first few months, as it felt better for my eyes to see with a lower, worse prescription than 20/20 vision. 

I’m so sorry yours was triggered by anesthesia then the antibiotic and beta blocker. I was very sick with a virus or bacterial infection like I said before this, but didn’t take an antibiotic. I did also have a weird migraine a few weeks before, but I’ve been getting migraines on and off since spring 2014 randomly. 

Ive done so much research in so many areas it’s exhausting. I just wish i knew what was wrong and how to fix myself. I’m so sorry for everyone else dealing with the thing, I pray we all find health and peace. I truly wouldn’t wish this on my worst enemy 

Jess you are so right. 

After many years of desperation I had a trans mastoid labbyrinthectomy almost a year ago. I am 100 times worse. I have read a lot in the last 12 months. Two of my own worst episodes occurred after antibiotics in the MYCIN group. 

This drug has the potential to be severely ottotoxic, would love you to have a look at this in your own time. 

Jason

Hey Jay,

I have done lots of research regarding medication and the brain after my symptoms began following my operation and then 100% being triggered/exacerbated by beta blockers and specifically the metronidazole/flagyl antibiotic and I believe I am suffering from ototoxicity and neurotoxicity, I am also now suffering from withdrawal from beta blockers too because the side effects were so disgusting I came off them cold turkey. I emplore anyone with these symptoms to try and stay away from medication if possible, because for me at least, it made everything so much worse and I feel like I am going to die at the moment be honest, it's that grim. I have asked alot of people on his site now if they have anything in common to me and the few that have replied have mentioned anesthesia or antibiotics. I think alot of people think they are good for you, so how could they harm you, but of course people that take drugs recreationally get really messed up, so why wouldn't the same happen with pharmaceutical drugs.

Thank you for replying Jay. You just confirm my hypothesis.

Hey Elise,

Thanks for replying so quickly. And thank you for your transparency, its important for all of us to be open if we're going to get to the bottom of this. I know 100% what happened to me, like I said I documented everything really throughly, and I can 100% say it was the anesthetic/meds for me, so I know I'm dealing with ototoxicity (because my ears are one of the worst effected areas, and I also know I have neurotoxicity because of the memory loss, seizures ect, which luckily for me were written in the side effects leaflet, otherwise I would have thought I was dying).

So, we don't have anything in common in regards to what triggered us, but I've found a few others that were triggered the same way I was. Whats odd is that whatever you have, exhibits the same symptoms as mine. So, I just go ahead and call what I have 'brain damage' these days, because to me that's what it feels like, so you have the same 'brain damage' as me, but you don't know why. I know everyone throws out suggestions, but the fact you had an illness before yours makes me curious, have you been tested for lymes? I'm sure at this stage you have had every test going and are absolutely sick to the back teeth of useless doctors who can't actually tell you what you have, but are willing to throw drugs at you, until they find one that sticks.

I watched a really good documentary called my amazing brain, its a horizon documentary, done by the BBC, I'm not sure if you can get it in the states, I follows a man from a crippling, life changing stroke through his recovery over 4 years, it shows some of the things he had to do to get his brain functioning again, I've started some of the tips, such as art work to get the optical nerves working again and brain games etc. It might be useful. Worth a watch at any rate, it gives you hope that you can get better! 😊

And the migraines that began in 2014, you have no idea why they started? Just out of the blue? Does any thing exacerbate your symptoms? Period etc?

X

And Thank you. 

Any more info required just ask

Hi Vanessa

I live in Canada but I'm sure you have vestibular therapists in California. Mine was at a rehab centre...where you would see a physiotherapist for a sports injury. I was referred by my family doctor.

Do you have blurred vision or pressure and the back of your head like you're being pulled backwards or downwards? This was huge for me! I would describe my head dizziness as wonkiness and never spinning (thank goodness)

As for it occurring after your son was born is not unusual as it came on after a period of severe stress for me!

Please know that i had a reoccurrence after 5 years but it only lasted 4 months because I started doing the exercises right away! This proves they work!!

Write me any time!

Debbie

Hi Bonnie

I was referred to a neuro-otologist. He did very specific tests to check for VN. I was hooked up to this machine and I had to close my eyes. Then he brought on spinning dizziness to see how my ears reacted. My good ear reacted normally with violent spinning and my damaged ear only very slight dizziness (because there was 48% damage to my balance nerve from a virus).

A physical therapist who does vestibular rehab is the same as a vestibular therapist...yes!!

If you get a VN diagnosis, you MUST take these exercises very seriously and do them 4 times a day for 3 months or as prescribed. They made me feel worse initially but then they helped tremendously!

Debbie

Hi Debbie,

Thanks for the reply. My typical symptoms don’t include dizziness like spinning type or vertigo, just more of an imbalance and unsteady feeling in my head. It is mostly all the time though. Was this test called a VNG? It has been mentioned by an ENT dr that I have this done. I haven’t had it yet bc I’m nervous that I’m going to add to my dizziness, chronically. I have heard of this happening from the test. That’s the last thing I need! They did not tell me that it could diagnose VN, though. IF that’s the only way to get diagnosed, it may be worth it. I’m wondering if the exercises were specific to your left ear, or were they just general vestibular rehab exercises? Bc if that’s the case, I could just go back to my PT and start taking them seriously, without having to perform the test maybe? Do you think it was important or helpful to know which ear was damaged? 

For me this came after taking an antibiotic, Flagyl. I also have major digestion issues and SIBO, so I always wonder how much that has to do w my symptoms, too. I am now working with a holistic specialist on this. 

Thanks for all your help!! I guess I don’t need to search out a “vestibular rehab specialist” if you think it’s the same thing as a physical therapist who can teach these? Did your therapist have you come in regularly to work on you/ check things? 

Bonnie 

Hi Elise, 

So extremely sorry to hear things haven't improved for you. I'm slowly getting better (not sure why or how). I do feel the best I have felt in 16 months. I try to drink a minimum of 4 16oz bottles of water a day, eat as healthy as I can, and be active! I have a 17 month old so I can't let this get the best of me though that's a lot easier said than done. It took over my life but thankfully I'm seeing the light at the end of the tunnel and I hope to one day feel 100% better. I also try to keep as much stress away as I can and I know being social is the last thing young feel like doing because of these symptoms but try! Being around family, getting out of the house and getting my mind off of it seems to help.  I've yet to be diagnosed with anything. Still I don't understand. I've seen countless doctors. I've had MRI of my brain, Ct scan, I've had the lumbar puncture done which was an awful experience. I have seen countless eye doctors. Hormones checked, thyroid checked, tested for diabetes, you name it I've had it tested. They all come back great and everyone says I'm completely healthy! Clueless would be an understatement. But I just keep pushing forward hoping to feel 100% healthy like they say I am! Good luck to you

Hi Bonnie

Yes the test was VNG...and it was not easy but it was worth finding out how much damage had been done and which ear was affected. I didn't feel any "wonkier" afterwards...i promise! I was terrified but i was fine when it was over. It gave me piece of mind and a definitive diagnosis...no more guessing. I accepted what i had and saw improvements in the wonkiness week after week. I stopped crying about it and became more confident it would go away. I recommend the testing to be sure that's what you've got....either VN or Labyrinthitis...they are almost identical.

The therapist should have a certificate in and be specialized in vestibular rehab though. These exercises were very specific to my balance issues and i did visit him once a week to see if i was improving. He watched the way i walked and did some exercises in his office every week. He encouraged me and supported me the whole time! I owe him so much for giving me my life back!!

Debbie

Hi Debbie,

 I don’t have blurred vision.. but I’m very sensitive to light. During the day if I’m outside I need my sunglasses! Or bright colors, patterns, and big crowds make me fill a bit dizzy (not spinning) just woozy.. Many times I have to look down toncenter my vision or look at a solid color.. so frustrating. I also get a lot of floaters.. I saw to eye specialist and they ran some test and dilated my eyes and everything was ok, they both said I had 20/20 vision. 

I don’t really get head pressure.. the only thing I feel is the back of my head all the way near my neck I feel tension at times.. gets uncomfortable, I have to massage it out (not allbthe time, just sometimes) or my head feels tingly on my left side, diff spots.. but that’s not always. I had a brain CT scan and thank God everything came out normal. I also got a spinal/neck MRI and the only thing the the doctor said I had was a MINOR bulging disk.. my primary doctor and ENT both agreed it was minor and had NOTHING to do with my symptoms! My doctor said the only thing he would recommend is what I’m already doing, acupuncture and massages! He said to try not to lift anything too heavy, but being a mom.. that’s imposible lol.

I guess that’s where the tingly feeling comes from on my neck.

I will go back to him and demand he refers me to vestibular therapist or physiotherapist.

Funny thing, I’ve never really suffered from any ear infections or such.. what kind of virus causes this condition??

I do suffer from ear pressure and randomly my ears hurt a bit or get itchy (weird). Acupuncture helps with thisbwar pressure.

Thank u for answering my questions.

Hello! You mentioned you’ve been seeing a hollistic doctor.. what did he test you for and what’s your treatment??

Wow, just reading all these comments. I had a severe bout of diverticulitis and took a trip to er. The dr on staff gave me the strongest antibiotic Tha make. It gave me an absolute horrid aftertaste. I never thought about this, but a few months later could have been when all this nightmare happened for me..can't remember the name if the med tho..wish I could..maybe a link to what brand we all took..

My testing was an ENG wonder what the difference is..

Hey terrie,

Yes it absolutely could have been the antibiotics. Is there anyway you can find out what they gave you? Antibiotic toxicity/ototoxicty can take months for the full damage to fully manifest but it is incredibly common, so common that there is loads of medical literature on it if you type in antibiotic toxicity/ototoxicty in humans, because animals are susceptible too. The antibiotics I took were called metronidazole (its other name is flagyl) and the side effects of those are literally a whole page long, and amoxocillin which is the same and part of the group of antibiotics that cause ototoxicty. Although all antibiotics carry a risk of brain damage. The ones I was on physically cause legions on the back of the brain, but they do heal over time. There are also cipro and fluoroquinolones which are incredibly strong and have caused thousands of people to get severely sick. Again there are thousands of accounts on the Internet about antibiotic poisoning and their symptoms are exactly the same as ours. It does not matter how long, or what strength you were on when it comes to antibiotics, you either get damage or your don't. I would never, ever have thought an antibiotic could cause this damage (or any damage) if it hadn't happened to me and I hadn't been documenting my sickness at the time when I started taking antibiotics, because boy did my whole life change after just 5 days of taking them.

Hey jessica! thats just so crazy that happened, im so sorry. 

I have noticed when I’ve tried medication I’m SO much worse. I also had the flu last nov/dec and was put on heavy duty antibiotics and ever since then I’ve been so much worse than usual.

I was tested for lymee once but I’ve heard it’s extremely tricky to diagnose. I’m trying to figure out a better place to get tested. 

That documentary sounds amazing! Any illness or disorder or event that affects our brains like this in any way is so debilitating. I’d rather just have chronic pain somewhere and have my head and mind back! 

Yea it was weird no one in my family has migraines and I randomly got like 5 in a month in 2014. The weather triggers it and makes it worse. I’ve never noticed any correlation with my menstaul cycle. Even with this sickness, the only thing that makes it worse is busy environments, sensory overload, being outside, being in bright lights. 

I’m SO happy for you that you’re getting better!!!!! What symptoms do you have? Are they like mine? 

I’ve hit a horrible rough patch I was Muxh better like 8 months ago I just slowly started going worse downhill. Thank you for the advice and encouragement!!! 

Do you take any meds or supplements? 

Glad to see that you are back posting.  Been concerned as to why you had stopped.

Hi Vanessa

I was never told what virus it was but I read somewhere that it might be a warped strain of the chicken pox virus.

Who knows!

I had an MRI too and a CT Scan...all were normal.

I hope you feel better very soon!

Thanks so much, I’ll keep u updated!

Omg bonnie,

I just had to reply just to say you got your symptoms from flagyl! Me too! It know this sounds weird, but I tried explaining that my symptoms came on after an antibiotic and people just looked at me like I was mad and I'd finally lost the plot because antibiotics don't hurt people, but I knew it was the meds. And it's just a relief in a way, (in the most awful way of course because feeling like this is the worst) that some one else got poisoned in the same way I did 😔🙁 I hope we start to feel better soon, luckily most of the research I've read says we will make a recovery slowly. But it can take years.

Elise, 

Thank you so much! It's a great feeling but scary to know it could ALL happen again. 

I'm so so sorry to hear that. When you started feeling better how long were you better before everything came back. 

I have days where my symptoms are stronger than others ESPECIALLY the week of my cycle. I can be fine all month symptoms at very minimum (never completely going away) and then when it's time for my cycle my symptoms are awful. Thankfully they aren't as terrible as they used to be. It used to be 24/7 to the point I couldn't think about anything else. Didn't want to leave my house or anything. I didn't even want to get up and do anything. Luckily I'm a stay at home mom. I could not imagine working. Well now I feel that I could but when this all started when my baby was 2 weeks old it was just horrible. I will try and find the post of my symptoms (very long)!

 I recently started a magnesium supplement. Like only in the last week. I've taken fish oil off and on and I just purchased a fish, flax, & borage supplement that I will start today.  

Like I said I just try to be as healthy as possible. Not that I think my diet or excercise had anything to do with my symptoms because personally I don't see how you could feel that way with a not so well diet and not exercising the whole world would be walking around like us. But I do believe that a good diet and excercise make you feel good and are really good for you. If that makes sense.

Hey skyler

Sorry to just butt in, but I'm curious, your symptoms started 2 weeks after the birth of you child? Can I ask, did you have a natural birth? Or a c section/epidural?

Thanks

Jess

I have also had symptoms that mimic yours for about 12 months now. I am a 42 year old healthy woman, with a good diet and I exercise regularly. I know that mine is not linked to my diet either, oh if only it were that easy! I was not stressed or anxious before these debilitating issues started, but I sure am now that I can't get rid of them and no doctor or specialist has any idea what is going on. I am seeing a Neurologist (my 3rd now) who specializes in headache, migraine and dizzy disorders. She has diagnosed me with migraine, however I have never suffered from these before. I am on Nortriptyline which is the only drug that seems to help a little (though never completely ridding me of my symptoms). Like you Elise, my problems are mainly from my eyes but I have been to 2 Optometrists, 2 Ophthalmologists and a Neuro-Ophthalmologist. None of them found anything significant other than some slight vision deterioration which is obviously to do with my age. My eyes get so sore and tired, I have pain around my left eye, my vision is hazy, I have dry eyes, I struggle in shopping centres with the lights and people and feel so out of it walking around them, I wear my sunnies everywhere as lights affects me, I recently got prescription glasses and have an anti-glare on them as I work in an office and really struggle with the artificial light and looking at the computer screen for such long periods. I also suffer from dizziness, neck pain, stiffness, wobbly legs, feel weak and lack energy, tiredness, pins and needles, sweating, occasional jaw pain and facial pain, headaches, but by far the worst thing for me is the way that I see things now. Everything is off and I now struggle to focus on things, my vision is something that started this whole things for me and it is still with me 24/7. But all the eye tests say that they are fine as are my optic nerves (function as well as physical appearance). I have been through so many tests and they are all normal. I like Alex's idea of a sleep study, I am yet to look into this and will see my GP about it next week. My partner has been saying that I snore (not particularly loudly) and that I appear to be struggling to breathe. I really need to explore this further. I am desperate for answers in the hope that I can find something to treat whatever this is. I wish you all the best Elise, I have been following your post as it has been the one that I have found to be closest to my symptoms.

Labrinthis or menierres..have u checked those out? Prob not spelled right but sure sounds like your symptoms..

I never really got “better”, undortunately for me this thing has been pretty constant 24/7 but about 8 months ago I was feeling a little better than now and when it first started. It lasted about a month and a half where my symptoms were just less intense than usual. I don’t know why they became less intense  

If it’s around the time of your menstraul cycle you could hve vestibular migraine! This is very connected to hormones in a lot of women. 

I definitely agree and understand what you mean about diet and exercise not CAUSING this, but that it does make you feel better in general! 

Other than supplements are you on any other medications that have helped you? 

Hi Elise, I just stumbled about that you felt better about 8 months ago - I assume in the summer? 

What could mean that your Vitamin D was replenished with the sunlight.. and now, probably not exposed to sunlight that much you feel worse. 

So you might be Vitamin D deficient... 

Vitamin D regulates two important bone minerals - calcium and phosphorus  and also participates in several other functions (cell differentiation, stimulation of immune system, blood pressure regilation and insulin secretion) .. 

unfortunately a deficiency can cause muscle and bone weakness and pain.  The bones can‘t mineralize properly since there is not enough calcium and phosphorus available in the blood.. even there might be enough of the calcium and phosphorus in your diet, a lack of vitamin D could hamper their absorption.. what could also explain your weakness that you can‘t stand or take showers for long..

Just a thought.. 

Hi cth! I guess I was wrong. I didn’t realize it was March right now, it was actually a year ago. It wasn’t in the summer it was when it was still snowing the end of February, March time 2017. So definitely no vitamin d :,(

And I wasn’t really feeling any better, that’s why I hesitate to mention it. I still had all the same symptoms, no symptoms went away. It’s just that a few of my symptoms weren’t has severe as they normally are. Through this entire time I’ve never actually felt better or felt “normal” or felt like I did before I was sick. Some of my symptoms were just less severe. I still couldn’t drive or go to class or even really be outside it’s really hard  

Elise-

I posted in this thread earlier, but try Florajen 3 for a month and see what happens. I was in a similar situation as you and it has worked wonders for me. Obviously, I don't know if it's just coincidence but it can't hurt you to try. Good luck to you.

I’ve been to an ENT and had hearing tests, no tinnitus or ear fullness. Plus my dizziness is not like vertigo, it is more lightheadedness but I think it comes from my eye issues. Not sure about Labyrinthitis, I don’t have any issues with my ears or vertigo which again seem to be the most common symptoms of these. So hard to get answers from the medical profession. These blogs are more insightful I’ve found!

I agree with you Terrie...labyrinthitis or vestibular neuritis...been there...

Hi Jen

Just wanted you to know....i was diagnosed with vestibular neuritis but i was never spinning dizzy...just had this constant wonkiness or unsteadiness in my head. This affects vision big time!! The only way to get tested and eliminate vestibular issues is to see a neuro-otologist...

Debbie

HI Elise, it was just a try. Do you take any supplements? 

Hi jen! Sorry I didn’t get back to you. It’s so hard to see all the replies and try to find them! I’ve always been very healthy too and had a good diet. Like someone else on the thread said, of this were linked to our diets half the people in America would be feeling like us. Unfortunately my problem isn’t that simple to solve either  

I was on amitriptyline for a while (kind of like notriptyline) But it didn’t help me at all a few doctors now have given me a migraine diagnosis too. I have had so many different “diagnoses”. 

I’ve seen SO many optometrists, opthamologist, and one neuro-opthamologist as well. It’s so frustrating seeing so many doctors. The neuro-opthamologist definitely didn’t spend any time with me or help at all. 

I was so convinced it is something with my eyes because it all stems from my eyes. But then I had a doctor which told me we don’t see wirh our eyes we see with our brain. So I have no idea what’s going. My perception on the world is just off and looks odd. Nothing looks right anymore at all. It’s like I’m in a weird alternate dimension for a year and a half now. So scary. I’m so sorry you’re going throigh this too. I pray we all find peace and answers 

im so sorry I missed the reply with you saying you can do a diet analysis for vitamins nutrients! How do you do that? 

Hi Elise

Your doctor is right...we see with our brain not with our eyes! Your brain is dealing with something it doesn't know how to handle. In my case, it was damage to my balance nerve which was deep in my inner ear. My brain was trying to figure out what was going on...it was getting mixed signals from one good ear and one bad. It caused a wonkiness in my head which affected my vision....the exact symptoms you speak of....

Debbie

I think it’s a strong possibility I had vn and my body has physically healed from the virus, but I’ve never been able to compensate after wards. In order to see a vestibular therapist did you need a referal from a doctor? 

I have access to a program through College. I can tell you it is really eye-opening. You would have to write down 3 days of what you eat and drink - no supplements. You can guess on the oz or let me know the size so I can figure it out.. And if I had questions I can just contact you. 

Like: 

Day 1: 

breakfast: 1 cup oatmeal made with water - no sugar

drink: 8 oz water

added 1/4 cup blueberries and 1/2 banana

snack: apple (medium size) 

Lunch: sandwich - 2 slices whole grain bread, 1/2 tomato, slice turkey cold cut 

drink: 8oz milk

snack: banana

Dinner: grilled chicken (1/2 lbs) 

etc. 

The program tells me exactly what your intake is on carbs, protein,water, all vitamins, all minerals etc and compares it to the DRI's. 

If you like, just pm me since I would also need your height, weight and age. 

 

Thanks so much Debbie and Terrie for your insights, I really appreciate it especially seeing I am not getting any answers from doctors and specialists. Debbie, how long did your Vestibular Neuritis last? I thought it was more of a short term health issue, but obviously not. I’ll definitely check this out as a possibility and speak with my GP about it next week when I see him. 

Thanks Elise, you really do have such similar symptoms to mine and like you, I am scared at how long it’s been going on and how long it may continue to go on for. All the best to you too. I really hope you see an end to your horrible symptoms soon Jen

Just to chime in, my after effects from VN lasted 3 years.  My recovery is around 90% to 95%.  It was not spontaneous. Little by little coupled with trying everything to improve. Be sure to check levels of magnesium, vitamin D and ferritin. As CTH has said, all nutrients used by the body are essential and levels being off can definitely add to symptoms. Even if the levels are in the lower end of what is considered normal. 

My first bout lasted 2 years; my second 4 months

Debbie

Hi Jessica! Yes Flagyl definitely brought  on all of my symptoms. I have read a tremendous amount ab toxic reactions from Flagyl as it seems like you have as well. I have connected with many other people who are in our situation. After seeing numerous doctors and finally finding a couple who agree with me, they have found research that shows that people with long-standing digestive or liver issues are more prone to reacting to these antibiotics. I have taken many over my life and never reacted until last February. It was sort of like the Straw that broke the camels back. I am working with a holistic practitioner now on just getting my whole body better in general (many deficiences and stomach issues). It’s going to be a very long process. I also saw  an eye dr who specializes in binocular vision dysfunction. I do have a degree of that misalignment. Look it up as it may be affecting you. He said that sometimes this issue can arise from the body going through any type of trauma. I haven’t used the prism glasses yet to see if they help the head/eye symptoms but I will. So sorry you’re dealing with this, too. I’ve never been through something worse in my whole life!!’ 

I agree on the nutrition. I have a co-worker who had years of debilitating migraines. She was on 5 medications which gave her other symptoms to deal with. Last resort was going to be neurotransmitters in her head. She went to a nutritionist who put her on an elimination diet. Turns out gluten was her trigger. She's off all her medications and barely a headache since.

Hey bonnie,

Ahhh this forum is so hard to keep up with the replies. This antibiotic has ruined my life. At the moment it feels like my whole body is dying. I'm only 5weeks in to my recovery, I pray that it gets better otherwise I don't think I can live like this. I am house bound and crippled from my symptoms. I have done so much research I could write a book. I think our eye issues are much more simple, I've done research, some antibiotics cause the retina to detach, some cause scarring on the cornea, and others cause the optic nerve to swell. I imagine in my case it's the latter because I've had eye tests and my vision is prefect, my eye balls function correctly, but its signals are getting confused and I am soooo sensitive to light which makes me think my corneas are damaged/scarred. I would never have thought an antibiotic could cause this much damage. I haven't even been to my doctor, I'm so disheartened by all this, but I know he'd agree with me, he's pretty spot on with stuff like that. I don't know what doctors can even do at this point. I have learnt that medication does more harm then good. I am just hoping time is a healer and taking it easy and eating right blah, blah. You know the drill I'm sure. I'm like you, I had taken so many antibiotics in my life, but this and amoxocillin at the same time broke me too. Im glad that, even though we are all going through our own personal hell, we have somewhere to talk about our symptoms and help each other through and offer suggestions. We'll get better. Slowly, but we will. We are all incredibly strong. X

Jessica, will you take natural antibiotics then such as tumeric? Or what will u do next time u need one. Antibiotics have saved many lives. I agree about the danger of meds I do, but at the same time, what can we do in place of..?

Yes...i got a referral from my GP. And yes....your brain needs to be retrained...it can't do it on its own. The exercises are VITAL TO RECOVERY!!

Hi Deb,

How are things going for you? Did you ever have the other knee worked on?

Hi Terry

All is well with me. I have not pursued surgery on my other knee yet. I am working out with a trainer at a great gym 3 days/week and have lost 22 lbs so far. It is making a world of difference for my knee!

As for the dizzies, they are staying away too! I hope you are well Terry!

Debbie

Hey Debbie,

Me again! I’m just wondering when you did vestibular rehab..if you not  only did the eye exercises but did the physical therapist also work on your neck/ head when you went in? My physical therapist is saying I have some instability in my neck as well so he wants me to do some exercises besides the eye ones, and he works on my neck when I’m in there. but every time I leave I later feel worse. I’m just wondering if that part is pertinent to the vestibular eye rehab therapy?  I think after all this started last year that my neck just doesn’t like being messed with even though I have issues.

Hi Bonnie

No.... my vestibular guy only had me doing exercises for my brain/eyes.

Debbie

Hey terrie,

So for me personally I will not take antibiotics/any medication again, even painkillers, unless it is a life or death situation. My mum thinks I should buy a medical bracelet that states that fact and also that I'm allergic to anesthetic considering it was the anesthetic that did that damaged to begin with and I hadn't fully healed when I was given antibiotics. However not all antibiotics are created equal, some don't have as severe reactions or side effects, amoxocillin tends to be the least damaging from what I've read, cipro, flagyl, floxies etc are the ones that come with more severe warnings. We are so quick to rush off to the doctors at the first sign of illness and that stops our body from producing the antibodies to fight infections making our immune systems weaker/damaged. I used to always get ill and everyone would comment on it, and at the time I thought I was just unlucky, but now I realise its because my immune system was ravaged by my abuse of antibiotics. I have done so much research and I have made that decision based on how I feel now. To be honest even if it was life or death I would struggle to let someone treat me with them, because so many days I have felt like I'm dying anyway from the pain and symptoms that I feel death would be a preferable option, that's how bad I feel some days. I don't know what we can do in place of antibiotics unfortunately, other then try and be healthy, try maintain teeth health, eat well, get ill and let ourselves heal naturally, you know. To try and build ourselves up from the inside. I am at a point where I am potentially facing a life time of inner ear damage and eyesight damage as well as a life time of pain. The only thing that brings me some relief is that many of the stories I read about people who have antibiotic damage do make some form of recovery, albeit slowly and as long as they stay away from medication. So what can I do?

Also just to add for everyone, I did 8 weeks of a incredibly restricted diet, called the keto diet. No sugar whatsoever, even honey etc, and low carbs/no refined carbs/no alcohol/no caffeine etc, and I didn't notice much of a difference to my symptoms. I'm bringing carbs back in and being less restrictive with sugar etc, but still trying to eat as well as possible. I also haven't noticed much of a difference in regards to vitamins and supplements etc to my symptoms. I think it's more of a waiting came if you have antibiotic toxitcy.

Jessica, do u ever use essential oils? When I get sick, I usually do not go to drs. I use oils and tumeric or other natural immunities. .I am a firm believer of them. Many natural antibiotics out there..I believe I was on flag when I started with all these strange symptoms. I had a severe bout of diverticulitis and the pharmacist told me it was strongest out there..I hated taking it. Left horrid taste in mouth..thank you for response. .will be keeping up with info and will share any I come across as well..

Hey terrie,

I haven't used essential oils yet. I'm fresh out of antibiotics and haven't been ill yet, touch wood, but if I do get ill I will use natural remedies instead. I went to my doctor yesterday because I needed to get a note for my university because I've not been able to attend and I wrote down my symptoms, and he told me I am having an awful reaction to the flagyl. So that was nice, in a roundabout way that he acknowledged that it was the meds, and didn't just think it was psychological. It helped my mum was there to say she's witnessed how much I have been suffering and she's seen my symptoms, like when my toes turn white or I get a rash all over my face for no reason or my tremors. He also seemed incredibly concerned and wanted to send me for brain scans to check for brain damage but I said no. I've learnt through research the neurotoxicity (poisoning caused by man made products) is not detectable through scans, as it is not physical like a bleed on the brain etc, instead it attacks your brain cells. In exactly the same way as drugs attack drug addicts brains when they abuse them, and it's leaves them with slurred speech or uncontrollable shaking, or the same way it effects people who have been badly poisoned, or people that get chemotherapy. It takes time to heal, you have to help yourself, brain games, memory games, learning new skills, like how to play a musical instrument or learning a foreign language, or starting to properly exercise again or reading for pleasure even if it's uncomfortable. Yoga for strength and balance. These are the things that will help us. Your brain is damaged and like any other person with brain damage you need rehabilitation. Its just a shame doctors don't see this sort of illness in as serious light as a stroke for example because most of the time they don't have a clue. V annoying.