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

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Elise93
Elise93

Hi everyone!

I don't know where else to go, and was hoping someone could please help me. I'll start off by saying I'm a 23 year old Caucasian female. Going on 5 months now, I have had absolutely debilitating symptoms which have hindered my daily life. I feel these symptoms every moment of every day.

It started with dizziness and a persistent brain fog. I just thought I had a bug, and tried to go on about my life. However, my symptoms have never gone away. This "brain fog" I am talking about is a feeling of complete mental confusion, I have no memory, I cannot concentrate on anything, it feels like there's a dark blanket on my brain clouding all my thoughts. I have extreme disorientation and haziness. I feel like I'm always in a dream like state.

I am constantly dizzy and feel a pulling sensation, as if I'm ready to fall over at any moment. It feels like there's air inside my head, and I'm always very lightheaded. Whenever I try to drive I feel this pulling sensation pulling me down.

Another problem I have is with my vision. I am having very blurred vision and have double vision. Everytime I look at something up close it is extremely blurry and I cannot see at all. My perception on things has completely changed. I feel like everything looks very odd and strange and I don't have the right depth perception. It's like I'm in a horrible dream like state all the time.

I have been having headaches and head pressure as well, and having horrible pains behind my eyes. The pin starts from the back of my head close to my neck and continues up my head and the sides of my temples. My eyes hurt so bad, and it feels like knives are jabbing my eyes. My head also feels extremely heavy all the time.

All these symptoms have been causing me severe anxiety, and I have been having panic attacks from them and feel like I'm dying. It is causing a strange disrespity sensation, where I feel like I'm not even here anymore and there's a detachment from myself and my body. I have had to drop all my classes at college and quit my job because these symptoms make me lay in bed all day long. I have been unable to drive for months and can barely get up to walk around. If anyone could please help me or know anything as a suggestion to try.

I have been to my general doctor, 2 ENTs, 1 neurologist, have had 2 MRIs, a hearing test, VNG, multiple blood tests, and no one knows what is wrong. I can't live like this anymore. Any help is greatly appreciated.

-Elise

14 likes, 1771 replies

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  • Guest
    Guest Elise93

    Posted

    Hi, 

    It almost sounds like depersonalization/derealization disorder. Maybe seeing a psychologist would help.  The symptoms are: 

    -Feelings that you're an outside observer of your thoughts, feelings, your body or parts of your body — for example, as if you were floating in air above yourself

    -Feeling like a robot or that you're not in control of your speech or movements

    The sense that your body, legs or arms appear distorted, enlarged or shrunken, or that your head is wrapped in cotton

    -Emotional or physical numbness of your senses or responses to the world around you

    -A sense that your memories lack emotion, and that they may or may not be your own memories

    Symptoms of derealization include:

    -Feelings of being alienated from or unfamiliar with your surroundings — for example, like you're living in a movie or a dream

    -Feeling emotionally disconnected from people you care about, as if you were separated by a glass wall

    -Surroundings that appear distorted, blurry, colorless, two-dimensional or artificial, or a heightened awareness and clarity of your surroundings

    -Distortions in perception of time, such as recent events feeling like distant past

    -Distortions of distance and the size and shape of objects

    I would look into it. Therapy can help. Good luck!

    • Elise93
      Elise93 Guest

      Posted

      Hi Camden! I have already looked into this and spoken with my therapist and psychiatrist. The issue with my problems is all the psychical Symptoms that started at the beginning and have continued 24/7 for a year and a half such as severe headaches, eye aches, Eye pressure, light sensitivity, the visual issues, head pressure, tinnitus in ears, dizziness, double vision blurred vision inability to wear glasses and barely constants (Contacts are a bit better for me, for some reason when it’s closer to my eye my perception is a bit better ) visual vertigo, my eyes can’t focus and feel like they’re separating and spinning in my head. The derealization anddepersonalization I have 24/7 too is more like another added symptom. In many discussion forums I’ve been on people diagnosed with Dr/dp disorder still feel okay, and can drive and go to school and work without debilitating physical symptoms. It’s just such a hard process trying to eliminate everything especially because there’s no EXACT tests for these things 
    • steph12793
      steph12793 Elise93

      Posted

      Elise, I don’t think all of this caused by anxiety but may contribute. Yours seems to be stemming from something very physical. The anxiety just intensified it!!

      Don’t give up I can assure you will find an answer someday.

      Are you able to watch television? Socialize at all? I’m having trouble with all of that. 😢

    • Elise93
      Elise93 steph12793

      Posted

      YES I 100% agree with you! I had this for a while before developing the severe anxiety. After having the severe anxiety, everything is definitely not intensified and much much worse. 

      I know it makes it worse for me, but it’s so hard to control when I don’t even know what’s wrong sad 

      Thank you so much for the encouragement, I need it!!! <3 

      All those tasks are almost impossible for me. I used to be a total perfectionist and always on the go and being very productive. Now even trying to have a conversation with someone is near to impossible, I have completely lost all social life. I can’t go out and have a few drinks anymore or really do anything fun with any friends. It’s very isolating and debilitating which I’m sure makes everything worse. It’s such a vicious cycle sad even being on a computer too long makes me feel worse. It’s very hard to try and just be a human being everyday and do the simplest tasks 

    • steph12793
      steph12793 Elise93

      Posted

      I’m so sorry, Elise.

      You are NOT alone though just remember that you willl reach a point in time when all of this is just a memory and you will be healed. It’s hard sometimes to encourage yourself especially when you’re feeling desperate and helpless but it is important when dealing with issues as debilitating as these.

      Keep in touch, if you need to talk you can private message me and even add me on Facebook if you want. 😊

      You’re not alone💕💕

    • Elise93
      Elise93 steph12793

      Posted

      Thank you so much Steph for the sweet encouragement. I needed a pick me up today ?? I will definitely private message you and add you! 

      I try so hard to stay positive but it gets very difficult at times wanting my old life back 😕 but it is so helpful to know I’m not truly alone in this! It’s so important to have support from others going through it. We are all so strong and everyone here truly amazes me. I never realized something like this could happen where it’s so hard to get better and find a diagnosis. The strength it takes to get through this is amazing, and I admire everyone struggling with it and pushing through. Thank you for all your help and support 💕

  • beth916
    beth916 Elise93

    Posted

    I really hope you read this. Everything you have posted is EXACTLY what ive been going through! Ive been to the ENT, an opthamologist, and had an MRI. NOTHING has been found. This fogginess and dizziness and headaches have been going on for 2 or more years. I feel like my head is real heavy all the time. It makes me feel detatched from reality. Ive looked up alot of stuff and found so many different things that i dont know what to believe.
    • Elise93
      Elise93 beth916

      Posted

      Hi beth! I’m so sorry you’re going through the same thing. It’s horrible.  My is the same way as you, very heavy headed with cloudiness and severe fogginess, I’m always very confused all the time and it’s hard for me to do anything anymore. sad I’m so lost as to what to do. I’ve been to SO many doctors who have given me diagnoses of vestibular migraines, complicated migraine disorder, eye convergence disorder, fibromyalgia, chronic fatigue syndrome, ppd/Csd(chronic subjective dizziness), just anxiety go home and sleep it off. It’s exhausting not knowing what’s wrong. 

      Is yours constant too or does it wax and wane? 

  • DizzyLizzy68
    DizzyLizzy68 Elise93

    Posted

    Elise, migraine symptoms can last for months or years. Migraine is a neurological disease, not just a headache. It can be a diagnosis of exclusion because it can cause so many crazy symptoms, and present in atypical ways that many Dr's do not see in their practices. Even neurologists disagree on how to define migraine, and the official definitions tend to change frequently.

    It sounds like other scary things have been ruled out for you. I would follow the advice of another person here (sorry forgot name) to thoroughly rule out autoimmune diseases. You would need to see a rheumatologist to do this properly. If that has been done, then I would consider a trial of one of three medications most often used successfully for these types of migraine symptoms: verapamil, effexor, or topomax. You said you tried amitriptyline- I did too and it made my dizziness worse so that one wasn't for me. Migraine patients are typically very sensitive to meds, and tend to not want to take them or stop them too soon. Many people may have to start low and titrate up over a period of time to avoid side effects. This means that it will take longer for the meds to help, but what is there to lose? After getting to the correct dosage, it can take 4-6wks for the drug to kick in. So it pays to stick it out.

    • Elise93
      Elise93 DizzyLizzy68

      Posted

      HI Lizzy! I am seeing a rheumatologist soon, thank you for your advice, I will take any I can get! 

      Yes amitriptyline didn’t do anything for me, I really didn’t like it. We’re you diagnosed with vestibular migraines?? And have you found a medication that has helped you at all??

    • DizzyLizzy68
      DizzyLizzy68 Elise93

      Posted

      Yes. I was originally put on propranolol for my vestibular migraine. I also take clonazapam as needed. The primary Dr put me on propranolol, but by the time I got to the Neuro appt, it had seemed to start helping. She said it wasn't her first choice. And from all my research it is not first choice for MAV, but she left me on it since it was working. I have had setbacks that seem related to menopause. I cannot take any hormones as they trigger migraine for me. It seems when I have a setback (only 2x in 3yrs), my Neuro sends me to phys therapy for my neck/jaw, and I recover. I also have fibromyalgia.

    • Elise93
      Elise93 DizzyLizzy68

      Posted

      Thank you so much for your help and advice! I appreciate it so much. Did you also experience dissociation feelings like derealization/depersonalization where everything looks fake and you don’t feel like you’re in the moment and things look weird, your perception on your environment is just “off” and you feel very detached?
  • sadmichaela
    sadmichaela Elise93

    Posted

    Hi Elise,

    I thought that I was entirely alone in this awful sickness. I'm a freshman in high school and I've been out of school with this crap for almost two months. I have been to countless ENTS, neurologists, physicians, and physical therapists. They seem to thing its Vestibular Neuritis but my symptoms are so off from textbook cases that they are doubtful. I feel like a complete different person, sometimes I feel like when I look down at my hands I feel like i'm not controlling them at all. I've been nausea, blacked out, so I think at this point my mom is going to take me to Duke University's medical team that have a talent of figuring out things that seem hopeless. I was just going to ask how long you've had this and if anything at all has helped. I seem to have developed anxiety about being in crowded public places and I used to be so out-going and fun sad My depression is off the rails because I feel like my whole life is falling apart, I've had to do online school since I've been out but the brain fog has left me with short term memory loss and just made me plain dumb. I used to be the top of my class and now I can't concentrate on the simplest of things. I'm sorry to rant, but glad to know others have had this too.

    • Elise93
      Elise93 sadmichaela

      Posted

      OHMygosh michaela im so sorry you have this at your age!!!!! Mine started when I just turned 23  in college still. I’ve been dealing with it for 1 and 1/2 years now sad 

      I can completely relate to you 100%. Literally I’m a different person. I used to be so outgoing and fun, always loving life being so optimistic and happy and enjoying everything. Everything has completely changed. 

      My symptoms don’t fit “textbook” diagnoses either, that’s why I’ve had an impossible time finding any real solid answers. I couldn’t even finish my bachelors degree because I can’t drive or work or go to class anymore. Unfortunately they wouldn’t let me do all my work online and there was no way I could go to class. The professors Would speak and I couldn’t even understand a word they were saying. It was impossible for me to try and pass my classes and absorb anything. I’m used to getting all a’s and being very productive as school is so important to me and ive has to put it on hold sad sad my short term memory isn’t is pretgy much gone. I can’t even remember what I did earlier today. 

      The depersonalization you’re talking about is one of my most hated symltoms along with the brain fog. I’ll look at my feet walking, and I don’t feel like I’m actuallt controlling them or am the one making them move, like it feels like I’m moving in a weird dream and I’m not really here doing any of this stuff, even typing this message. It’s so hard explaining to doctors because they think you’re insane. 

      I hope SO much duke can help you, I’ll keep you in my prayers! 

      I have unfortunately not found anything that has helped me except taking Xanax, but I need to get off it because I’ve been on it so long, and now my body is going through withdrawals if I don’t take it so I wouldn’t recommend it rolleyes it’s a vestibular suppressant though and central nervous system suppressant so it helped my dizziness and eye dizziness and dream like state a lot. But now it’s doing more harm than good.

      I will private message you! If you ever need to talk PLEASE message me. The anxiety and depression I have is so severe now from feeling so alone and isolated it’s unbearable to handle sometimes. If you’ ever need someone to talk to I’m here! 

    • DizzyLizzy68
      DizzyLizzy68 Elise93

      Posted

      I just wanted to mention that Xanax is problematic because of its short half life. It can quickly cause rebound anxiety and other symptoms, putting one into a vicious circle of worsening symptoms. I was on it initially 20yrs ago, and a Dr with more experience switched it to clonazapam after it appeared to suddenly stop working. Both clonazapam and ativan have much longer half lives, and are used as vestibular suppressants as well as anxiety medications.
    • Elise93
      Elise93 DizzyLizzy68

      Posted

      Yea the Xanax wears off so quick now, I tried both Klonopin and Ativan but they didn’t really help the swirling sensation as much. It’s also just made the other symptoms SO much worse when it wears off, and my memory is even worse now so I’m just getting off it. It doesn’t even really help, just somewhat helped the swirling sensation a bit but unfortunately all my other symptoms are still there constantly 😕 that’s why I have little faith anti anxiety medications will help because even with anti anxiety meds like Benzos my symptoms are all still there 

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