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Debilitating symptoms and desperate for closure :(

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    Debilitating symptoms and desperate for closure :(

    Hi Braintalk forums

    Since 2010 I've had the onset of a 'syndrome' that has yet to be diagnosed and I'm having to wait a long time to see a neurologist and I'm getting desperate for answers. I'm wondering if anyone else is going through the same thing or has known someone with the same symptoms. My condition is worsening and I'm now experiencing moderate cognitive decline including memory loss and symptoms other people have said is similar to dementia. I am only 26 years old and sometimes forget simple tasks such as how to make a cup of tea. I am also having issue with language. i often psause when speaking, when this didnt happen before. I also keep tripping up on my words and my sentences are sometimes broken with me missing out in between words like ''and'' ''to'' ''the'' ''when'' etc .

    My first symptoms were orthostatic (caused by being upright) tinnitus, migraines, and vertigo. I would say the tinnitus was the first symptom.

    Since then my symptoms have gotten worse and take a longer period of lying down to improve. Back in 2010, my tinnitus for example was mild and just one noise. Now, it is three noises and it is literally defeaning. I'm on strong pills (prochloroperazine) to dampen my auditory system of my brain. I am also on anti migraine pills (pizotifen) but they do not seem to help much. I have debilitating fatigue, imbalance, headaches, back/neck pain, and also tremors in my extrmeties.

    i have had episodes of syncope (fainting) and these do not come on suddenly but i will feel progressively fainter over the course of 5 minutes before fainting. the closer i am to fainting, the harsher the tinnitus and headaches are. this to me is evidence the headaches + tinnitus seem to be some kind of ''warning'' alarm.

    7/10 times i see a doctor there is ''bubbly fluid'' behind my eardrum, but no sign of infection and I had an MRI of my inner ears done last year and they could not find any evidence for eustacean tube dysfunction .

    I also get very irritable at night and sensitive to light and sounds .

    In the past year alone my symptoms have accelerated and now after sleeping for 8 hours my symptoms will only be 80% gone rather than 100% gone which is really concerning me.

    It's very hard to chase up doctors appointments at the moment but I want to know if anyone else is going through or has gone through the same thing. Here's a list of things that have been ruled out;

    Meniere's disease
    Hearing loss
    Glue ear (as symptoms persist even with no fluid behind the ear)
    Acoustic neuroma

    I have only had lying down MRI without contrast.

    Welcome, sarahmables!

    I'm sorry I don't have a clue about what could be causing your problems but I hope that the doctors you're seeing are taking note of the drugs you're taking and investigating their possible interactions and side effects.

    I hope that you'll find some solutions soon.
    SPMS diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009. Glatiramer acetate since December 2020.


      Hello there,

      My comment may not be helpful but I'm really hoping you had this sorted out. It's very frustrating to feel something wrong but no one can tell you what it is. I feel you. Be strong and keep on searching for help.


        I am sorry to hear about what you are undergoing, I wish you well and take care! I hope you seek excellent help and solution.


          Originally posted by SweetChoco View Post
          I am sorry to hear about what you are undergoing, I wish you well and take care! I hope you seek excellent help and solution.
          I wish I had magic words of diagnosis and healing. I wish I had a bag of magic pixie dust to make it go away. It sounds like you may have made the rounds of the specialists who hold on to you long enough to determine that this was going to be a hard nut to crack. I pray that some weird symptom will set off an alarm in someone's head and it will all make sense. Gee, I have grandchildren your age. Not fair. Gentle hugs.