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

YES! Weirdly enough, I keep going back and forth between hypersomnia and insomnia. At the beginning like 1 and 1:2 years ago, I would sleep like 10 hours then take a nap and have NO energy and always tired. 

Then the more I just layed in bed all day and couldn’t move or do anything, it was hard for me to sleep at all because I just layed around. 

During this whole time though my energy has been non existent. It’s a chore for me to get my mail, even showering exhausts me. 

Yes, me too! I wake up even after 7 hours sleep on a good night (the nortriptyline helps me sleep) and I still lack energy and feel so drained in the morning then I feel like sleeping half the day. My dr wants to do a sleep study test next, which is one of the few tests that I haven't had yet. Fran, did you do this at home or did you have to go into their secialist rooms or hospital to have it done? I was reading up on sleep apnea type issues, which my dr doesn't think it is because I am not overweight or male! But my dad does suffer from it and it tends to run in families.  I read a few articles about the Upper Airway Resistance Syndrome (UARS) which is similar to sleep apnea but not necessarily as severe. Apparently it can cause headache and migraine symptoms. It is worth a shot, I am fast running out of options and I really don't want to let this beat me without knowing what is causing it. I'll let you all know what I find out (if anything), cross fingers as I am really trying my best to remain hopeful. 

Wow.. that’s a long time feeling not “normal”.. I’ve been feeling this way since I had my son in 2015. I totally get you when you say that you’re able to manage because you’re “used to it”... I can relate.. I’m adapting to this feeling.. there's days that I’m at a 2 and the symptoms are less noticeable and there’s other days where my symptoms are at a 8-9! I work and I have a son so I have to keep pushing through..

I haven’t found a diagnosis, and truly.. I’ve given up on western doctors.. 

My next step is to see a hollistic doctor.. all herbal medicine doctors that focus on vitamin levels and other stuff..

The only thing that makes me feel a bit better is Acupuncture and massages.. after I get those done I feel like I can think better!

I’m trying to save $$ to see a hollistic doctor, it’s not cheap.

Have you tried acupuncture?

Holy cow that’s a long time to feel not normal!! I’m sorry you’ve been dealing with it for so long. Had you ever been given any other diagnoses other than just anxiety? 

I hope I reach a point soon where I can get used to it and used to my new self. Even after 1 and 1/2 years im still not used to it because I keep searching for answers and am trying so hard to find a way to recover and find my old self again 

They keep deleteling my response that I just took ages writing. Ergh. This forum is so ridiculous.

I wanted to say that I don't think you should suggest antidepressants particularly, in the nicest way, I know your just trying to help. But the doctors don't actually know that it's to do with seratonin. They just know that seratonin plays a role. It's a lot more complex then that. The brain needs a delicate balance and antidepressants just mask that there's a problem, that ironically could have been created by meds in the first place. The only three people that I've ever known to k ill themselves in my life were all under 30 and all heavily medicated with antidepressants. What does that tell you? That they just don't work sometimes. Yes they can work but they can also cause very very severe side effects. Yes anxiety is real, depression is real, but dizziness is physical. Blurred vision is real. Etc etc. No imagination is powerful enough to imagine that. I don't care what any doctor says. They gave me propranolol for the anxiety, two weeks later I tried to k ill myself twice, the depression they gave me was so severe. Thank god I looked at the side effects packet before it was too late. At the end of the day doctors just don't know enough about it. Even brain specialists admit that they know more about outer space then they do about how the brain works. And those are the people who are prescribing meds? From an outside perspective. They don't even know what it feels like. They just guess and yes it works for 50% of people. The lucky few. But I would rather go holistic and rely on medicine that we've had for generations then trust what a doctor gives me from a pharmaceutical company that they 'hope' will work. I still think anxiety and depression are symptoms of a sick brain and disassociation. I actually believe disassociation comes about from the eyes not perceiving things properly and skewed depth perception because I only developed 'disassociation' when my eyes got damaged and my inner ear. It throws everything off slightly, giving the illusion that somethings not right causing the brain to panic, thus creating anxiety. We need to stop believing everything that doctors tell us. Yes, they can fix broken bones and many things, but the brain. No. Xx

Jessica, I'm very sorry you had that reaction to propranolol. That is just awful! I do agree with you that Dr's don't know everything, and that ALL prescription, OTC, AND even natural/holistic treatments have side effects that can range from mild to deadly. The worst I ever felt was when I had acupuncture done-worse than any drug effect. So go figure. We all respond to medications/treatments differently. I personally know many people who were helped by antidepressants in the arena of both anxiety and MAV. I was simply sharing my story to illustrate that MY mindset at the time was that anxiety was a "mental" disorder that could be fought as mind over matter. I didn't see it as a physical disorder (which I believe it is). When my Dr made that statement to me, it switched how I thought about anxiety. Yes, the statement was simplistic, surely in an attempt to change my mindset about trying meds. Anxiety is much more complicated than a simple serotonin deficiency, but there is also some truth to that statement, based on scientific study. Unfortunately, antidepressants can be a nightmare for some, and the best one can do is work with a knowledgeable professional that they trust. Too many GPs prescribe these and other drugs either incorrectly, and/or without timely follow up to identify and deal with side effects. I also agree it is best to try to solve one's issues using benign solutions. Talk and behavior therapy is pretty much side effect free, and is usually recommended when dealing with any type of disease process, not just anxiety or dizziness. I will have to respectfully disagree with you that a sense of detachment is absolutely not a symptom of anxiety. It's actually a well documented symptom of anxiety. But I also do not disagree with you that it can have other origins, as with vision/inner ear. Same as how heart palpitations can be a symptom of too much caffeine or a symptom of a life threatening arrhythmia! I do personally believe that these various disorders like MAV and dizziness without a direct inner ear explanation, fibromyalgia, etc are linked to dysautonomia or some other disregulation of the nervous system. At our point in history, there are meds that DO help people with these problems. But does it fix the root cause? I don't believe so. One Dr I know is using specific B vitamins in a protocol to help with this. His findings are not ready yet, but there will be a paper. I strongly wish for a true cure for these maladies vs a "band aid". But until then, I cannot afford (both financially and for my family) to wait for that. I am 50yrs old, and have suffered since age 20 (in chronological order) conditions that have been called: mitral valve prolapse, chronic fatigue (1990s), anxiety, depression, early MS, fibromyalgia, allergies, migraine, complicated migraine, basilar migraine, vestibular migraine, labrynthitis, Menieres disease. I have been worked up for autoimmune, endocrine, Lyme, valley fever, brucellosis (sp), HIV, CMV, latent EBV, etc, etc. Btw, this all started after a nasty case of mononucleosis when I was 17. Mono can bring out dysautonomia in those genetically susceptible, according to the Dr I referred to above. Anyhoo, I work as a scientific professional and have a 14 y/old I must support and nurture. So until a cure or better treatment is found, I'm very willing to try antidepressants as they have helped ME on many occasions, to be able to function close to normal. And yes, I've already tried over the years almost every vitamin, herb, homeopathic (one almost killed me with anaphylaxis), acupuncture, chiro, massage, etc. Chiro and massage help my fibro to some degree, but in the end, none of these things worked well for me. Just my personal experience here...

Hey lizzy,

Love your response and yes pretty much agree with everything you're saying. We all have so much knowledge these days. Have you heard of something called poly Mva? I've literally just read about it after finding an article written by two doctors, that have helped cure a woman from neurotoxicity that she got from antibiotics. I'm super curious to try it but it's insanely expensive, but it also has a mad amount of rave reviews. Just wondering if you've heard of it?

Hi Jessica,

I had not heard of the poly mva. I just looked it up very briefly. I have to be honest and say I am very leery of alternative treatments unless there is at least some scientific study on them. Sometimes one has to look outside the US for these studies. I will definitely give it a deeper look :-) I can think of a few natural substances that have actually been accepted widely by the medical community in disease treatment in recent time. One is Tamoxifen for types of breast cancer, and the other is silymarin (milk thistle) for the reversal of poison deathcap mushroom ingestion. I'm sure there are many others I am not aware of or remembering. Then there are those alternative or natural treatments that are not universally accepted, but some Dr's believe in their efficacy and there are at least some scientific studies that indicate positive results. Here I'm thinking of DIM, evening primrose, lysine, gingko, etc, etc. There are thousands in this group. But they haven't yet been universally accepted because the numbers or quality of the studies are lacking. Here, I'm personally willing to give them a try if it appears they will do no harm and potentially help. Then there are the treatments that fall into basic quackery. Studies are either non existent or done by the maker, seller, or someone who will benefit financially. Medical journals will often call these treatments out as completely useless or downright harmful. I'm thinking here of treatments such as coffee enemas for cancer. In these cases, you will get lots of testimonials by people who've had success. It's always possible there was a placebo effect, or they may have gotten better anyway, but most of the time the claims are false. On that note, I am also very leery of testimonials or reviews. Even with "verified buyer" reviews, it is not uncommon to have dishonesty for gain (false reviews). Third parties will often send a product free in exchange for a review, and folks making a living off of blogs or getting a free gift card are not gonna necessarily slam the giver. So that's is just my personal take on these kind of things. My thought on anything one might want to try that is alternative- first make sure you research what are the ingredients such that you will not be harmed. Many won't reveal their ingredients unfortunately. Then if one can afford the product, I suppose it doesn't hurt to try? If you look back through medical history, there are examples of substances that were shunned that are now accepted, so you never know. But generally if it looks like something actually works, researchers somewhere will jump on it to investigate.

I’m totally agree with you.. my symptoms give me anxiety at times.. it’s been almost 3 yrs with these symptoms so I’m trying to adapt.. Question, do you get floters.. basically it’s like little specs in the air that kinda look like lint or rain drops.. I get that a lot through out my day.. I’ve been to two eye specialist and they both ran a few test and said my eyes are healthy and I have 20/20 vision.

Hi Lizzy! See the weird thing is for me is that I’ve never had anxiety problems before in my life. I’ve always been a very happy positive person. The weird thing is the derealization and depersonalization came at the onset of this 1 1/2 years ago before I had any anxiety over my symptoms. I didn’t have severe anxiety until after months of being “sick” with no answers. 

The dr/dp has been there since the beginning 24/7, even before the anxiety ever started. I initially just thought I had some weird virus that was making me sick and would go away. I never even imagined someone could be sick for so long with no answers. That’s why I don’t even tell doctors I have anxiety anymore because it’s so easy for them to just write it all offf as anxiety. 

I had tried Effexor last year but my body is so sensitive to meds that even on the lowest dose, the depression and anxiety I felt FROM taking it made me suicidal. It was very scary. 

I also know my dissociation is somehow related to my vision. Like I said in my previous post to Lizzie, I had the dissociation since the beginning, 24/7. But I didn’t develop the anxiety until MONTHS after being sick. So how could the dissociation be from anxiety if I never had anxiety to begin with? The worse my vision got the worse my perception of the world got and the worse the dissociation got. It’s so hard to explain. It’s like I look at things and my eyes strain and are blurry and can’t focus so everything looks out of proportion and my depth perception is off and I feel like I can’t reach anything (like a dresser drawer for example) so my derealization comes from feeling physically detached from my environment because I don’t feel like my spatial orientation is accurate. I have a really hard time judging where I am in space in reference to my environment. I have such bad visual vertigo my eyes always feel dizzy and like they’re trying to cross or separate or spin around. 

They delete my response so I have to retype it. 

I tried Effexor last year with the same effects as you and it was terrible. 

My derealization and depersonalization came long before I had any anxiety like I mentioned in previous post . I didn’t develop anxiety until months after I was sick constantly. My is very related to my eyes, as the worse my eyes get the worse my dissociation gets. Like it’s hard to explain. My perception is off and my spatial orientation and depth perception isn’t right. My eyes can’t focus and I have severe visual vertigo, and the worse it gets the worse my dissociation is. 

The really weird thing for me is that the symptoms all become SO MUCH WORSE when I wear my glasses or contacts. I have not been able to wear glasses for 1 1/2 years because the dissociation becomes so bad. Contacts are still awful but they are a little better than glasses. My perception of my environment is wayyyy off when I am able to see “20/20” and have proper vision. My symptoms are much better when I’m “blind” and can’t see things properly. 

My eyes just are always blurry and dizzy inside my head. That’s why I am so frustrated with doctors say the dr/dp is anxiety because it’s so related to my visual symptoms. 

Oh that’s what else I forgot to mention! My dissociation and derealization and stuff gets worse with my vision. I can’t wear glasses anymore because it makes my depth perception and spatial disoriention so much worse. I have such a hard time figuring out my relation in space to my environment. Like even trying to grab a dresser drawer is hard. 

When I wear contacts even it’s still bad but not as bad as glasses. The derealization is much worse when I can see “20/20”. Most days I just don’t wear contacts so I just am “blind” most of the time and can’t see anything but at least the dissociation isn’t as bad. On days where my vision is horrible and my eyes strain and can’t focus AT ALL the dissociation is terrible. That’s why I don’t think my dissociation is anxiety related because it correlates so much with my vision and depth perception and spatial disorientation. And like I said I only got anxiety after months of being sick and feeling weirdly detached 

Hey Vanessa,

?So I still think anxiety is a symptom. Not that your symptoms give you anxiety. I see the mental health and the physical things as being all part of the same illness. I wonder do you get anxiety when your symptoms are particularly bad? Because I would flip it around, when your symptoms flair up it makes your anxiety worse, because i believe we all suffer from dysautonomia as part of our symptoms. Which is your bodies inability to regulate the fight or flight response and those symptoms don't necessarily come out straight away, the damage from c sections, anesthetics, antibiotics, antidepressants can take weeks/months/years to begin to show fully, its a lot like dementia and alzheimers, which is also why NONE of our symptoms show up on cats and MRI's. There are other tests however. I will try post a link to some useful information which two scientists performed on a woman showing signs of neurotoxicity.

?As for black floaters, they are the bane of my life, along with every other symptom of course haha. But yes I constantly have visual disturbances, its very unsettling. The first time my vison got damaged after my anaesthetic I went to a eye doc and they said I have perfect vision, but the letters board they get you to read was only a rooms width away from me, I don't suffer as much at that kind of distance, mine affects a much farther distance then that. maybe things start to blur really badly for me past 30ft. but again if I squint and strain I can see things. its very weird. like both my eyes are seeing different things and its confused in my brain. The first time I don't remember having black floaters but this time I definitely do, and from what I've researched its not a great symptom to have and its usually the one that sticks around the longest. Anything I've researched says if you suddenly develop black floaters you should see an eye doc right away because it could be damage to the back of your eyes etc,etc, but hey, we know they're going to send us away with a clean bill of health. I went to my docs today and got a note for my uni saying ive had an extreme reaction to medication so for me I'm glad my doctor is finally recognising that its toxicity. Just wish he had  properly recognised it two years earlier and I wouldn't have to go through this whole thing a second time. May I ask vanessa, are you on a special diet of any sort? I was on a super restrictive one, zero sugar and zero refined carbs, I didn't think it was helping, came off it and started to notice a pretty big down turn in my symptoms so  Ive gone back on it and also cut out dairy this time too.

This article relates to a specific antibiotic, you will see it has all the same symptoms we share, so they are basically treating neurotoxicity, that can develop from ANY drug that crosses the blood brain barrier. Not just antibiotics. Which includes Ibuprofen and aspirin (advil, etc for americans) because they can both cause Ototoxicity (damage to the inner ear) which will just exacerbate our symptoms.

?Its an interesting read and has some tests that they performed of the woman in question that aren't conventionally run I don't think and what they did to help her. 

https : / / w w w . n c b I . n l m . n i h . g ov / p m c / a r t i c l e s / P M C 3 1 7 5 5 0 8 /

Hey Elise!

?I hate it when they delete messages. V frustrating. Yup glasses will not help you, because your like me, my eyes are lovely, they work wonderfully, but the signals from the brain to the eye are horribly confused and doctors cannot see your optic nerves in your brain when they check your eyes. I get what you get, my eye balls feel like they're being pushed outwards or crossing and many times they physically hurt. They stream all the time, like I try and focus in the distance and it makes me cry, the lightest gust of wind and they cry, strong sunlight, pain and crying. A lot of the time my eyeballs physically hurt too. Like there's pressure, or like they might fall out. So theres several things that can cause this, for me I am constantly dehydrated, my body struggles to retain water even though I drink SO much, I think this goes towards my dry eyeballs, also in my case I believe the anaesthetic caused massive inflammation to my brain, like an allergic reaction which is why I had adrenaline flood my body 24/7, I believe it also caused my optic nerve to become inflamed and I believe the same thing is happening now, I also believe the specific antibiotics, both the amoxicillin and the metronidazole, might have caused slight scarring on my corneas or damage to the back of my eyeballs because I have SEVERE light sensitivity and black floaters. Its horrible. The disassociation I am 98% certain is to do with the eyes and also possibly the ears in our case. Because before my anaesthetic I had AMAZING eye sight. sharp as a tack, Hadn't been to the opticians in way over 10 years, because there was no need. 1 week after the anaesthetic and my eyesight was shot, and that's when the disassociation started. At exactly the same time and the days my eyesight was a bit better the days my disassociation was a bit better, I also have a damaged middle ear to both my ears, I cant equalise the pressure any more. I think for me that has something to do with it too. Everything is trying to compensate and that's actually throwing it all off. If my eyes are closed I suffer less from dizziness etc. 

?I know you said you had an illness which started yours, but the fact that you also suffer hypersensitivity to medication makes me curious that you might be suffering neurotoxicity too. Have you been to a neurotoxicity specialist? I remember you saying that you had become ill, but you weren't treated with antibiotics? Were you given anything at all? Do you notice hypersensitvity to any other medication, other then the ones you've mentioned? Because I never used to suffer when I was much younger, never reacted to anything but over time it got worse and worse, slowly I began to develop side effects from everything, even poxy sleeping pills, now I really cannot take anything, even the contraceptive pill gives me horrific side effects, yet I took it happily before my anaesthetic for 12 years. Never had a problem with it, in fact I'm gutted I can no longer take it but it causes terrible panic attacks now and depression. I honestly think most doctors are useless. They will just constantly diagnose you with mental health issues and that can be SO disheartening and depressing to hear, especially as virtually none of us had mental health issues before. Are you on a specific diet? I'm not one to preach about it, I gave up on my super restrictive diet because I thought it was a load of rubbish and wasn't helping but turns out after two weeks without it, it was actually helping a little bit. I was much more with it. I sent a link to vanessa. I do hope you read it too about antibiotic toxicity, even though I know you weren't given any, but if you suffer medication hypersensitivity like I do its worth a read as the damage can take months and years to fully develop and the more meds you take the worse it will get.

?Also like I said to Vanessa I think the anxiety is a symptom. We all also suffer anxiety. If it wasn't a symptom, some of us wouldn't suffer, we'd just have the physical symptoms, its all part of it some how. that or the brain is just freaked out because its not happy.  

Elise, that was just a suggestion of one possibility. I went through the ringer of tests back in my 20s before anxiety meds finally helped me. And I was happy, active, non-anxious person as well before my problems started. And I'm not 100% sure it was just anxiety, but the meds helped. Those symptoms can def be from vestibular/ocular/Neuro issues as well, as I mentioned in my comment to Jessica. Have you been checked for POTS? A cardiologist versed in autonomic dysfunction is the person who usually knows most about this.

Also wanted to mention that I also had physical symptoms long before a feeling of anxiety. And I was trialled on SSRIs initially be family Dr at low dose, and they drove my dizziness and anxiety through the roof! I went to a psych because a friend told me they are the experts in psych drugs. He gave me the lowest dose of prozac, had me cut it into fourths, and do the same with a benzodiazepine (klonopin at the time). And increase on a schedule. The benzo suppresses the nasty starting effects of the ssri, is what I was told.