No help at a dead end

Posted , 8 users are following.

For a year now I’ve felt dizzy, not the world spinning around me more faint feeling or if you’re extremely hungover. It comes with muscle aches headaches I’ve lost my job my boyfriend and I’m just fed up I can’t leave my house anymore or if I do it’s not for a long time because I get so tired. I’m feeling really down about it and just want some help. I’ve also just given myself a ruptured ear drum by accident when cleaning my ears not sure if that makes things worse but I feel sick to my stomach. What Can I do because I don’t wanna live anymore not like this anyway. 

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19 Replies

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  • Posted

    Have you been able to see a doctor at all?  My dizzy isn't spinning it's more vertigo and feeling faint.   I force myself outside and walk my dogs but I go very slow.  I also have headaches and muscle aches and I'm trying to get in to see my doctor.  I even have fevers off and on with this.  It's been going on for over a week now and interfering with my life.  What drives me most crazy is the noise in my head.  If I do get to a doctor I will update you on what she sais.  For now I was told it was a virus, but we'll see.

    • Posted

      Vertigo means the “room is spinning” dizzy. Lightheadness means fainting dizzy.
    • Posted

      It’s been happening for a year it’s ridiculous and it’s gotten worse then better then even more worse I don’t understand. I’ve had mri, ent checks and I can tell they’re trying to give up on me but I’m not having it 
  • Posted

    Hi,

    Feel sorry for you, I'm in the same situation as you. Well, I suggest you to see you GP if you didn't saw him until now. Also you need to be seen by NET specialist. Vertigo has different symptoms to each person, so you need professional help. My symptoms are a little bit different from yours. I have an appointment to NET specialist next week, I was waiting for 6 months. My GP who was useful didn't help me at all except paracetamol...... Now becouse I have waited so long for NET specialist appointment ,both ears are affected. Good luck for you....

  • Posted

    Have you had your Blood Pressure measured?

    Whats your BMI - Anorexia can cause the symptoms you’re describing.

    Have you ever fainted?

    • Posted

      I have yes when it first started was perfect but noticed it’s starting to get lower each time now and I’m no where near anorexic and as for fainting no never fainted just feel like I will 
    • Posted

      Do you ever stand up and feel like you’re about to faint?

      What are your BP readings?

      Do you have any other medical conditions?

  • Posted

    Sinead, nobody can understand the way you feel. I have experienced this everyday too and have done for the last 3 years (every step, every day) but I have the support from my wife, family and friends, so god knows how you must be feeling - it drives you mad and insane! Sick in there you’re not alone
  • Posted

    Have you got an VNG test?
    • Posted

      Videonystagmography (VNG) 

      Videonystagmography (VNG) is used to evaluate patients with dizziness, vertigo, or balance dysfunction. The inner ear and eyes movements are connected through the vestibulo-ocular reflex. The vestibular system monitors the position and movements of the head in order to stabilize retinal images on the eye. In this test, eye movements are recorded, and give information about the central and peripheral balance system. It provides an objective assessment of the oculomotor and vestibular systems. VNG testing consists of three parts: oculomotor evaluation, positioning/positional testing, and caloric stimulation of the vestibular system.

      The test takes about ninety (90) minutes to complete. Some dizziness is normal with VNG testing, and typically is of short duration. It is advised to bring someone to the appointment to drive you home, should you feel unwell afterwards.

  • Posted

    Get yourself a referral to a rheumatologist and ask to be tested for vasculitis. There are different forms of it Lupus and Sjogren's being among the most common. They can affect the central nervous system with ghe type of symptoms you describe with nothing showing up on scans. I was diagnosed 13 years ago after a long time suffering and going from one specialist to the next not knowing what was going on.

    • Posted

      Firstly Lupus and Sjogrens are not vasculitides. They’re autoimmune connective tissue diseases.

      Vasculitis is phenomenally rare and often phenomenally dangerous.

      Also you dont need a rheum referral - a simple ANA blood test can rule out lupus and sjogrens.

    • Posted

      Sorry ni it can't blood tests are notoriously elusive for these disorders and for the definition of both contact Vasculitis UK. Both disorders are a form of vasculitis and yes they are connective tissue disorders. I attend a specialist vasculitis clinic in Cambridge for Behcet's treatment which is another form. No blood test as yet is absolute 'proof' of any of these disorders which is why Cambridge are trying to develop a blood yest currently.

    • Posted

      Behcets is a form of vasculitis correct.

      Lupus is a systemic autoimmune condition.

      If ANA is negative - you almost certainly don’t have lupus.

      The complicated bit which you’re refering to is when ANA is positive - it doesnt mean you do have lupus.

      Btw Behcets diagnosis is far more enigmatic than lupus. 

    • Posted

      Sorry to disagree but Lupus and Sjogren's are definitely both under the same umbrella as Behcet's and all vasculitis. And the ana blood test is often not positive when you in fact have it. There is a lot of info online which confirms what I am saying and good reliable information from groups like Vasculitis UK on Lupus Sjogren's Behcet's and other forms of vasculitis. And yes they are also all auto immune disorders caused by your own faulty immune system.

      Anyone who needs to read further on any of these conditions and how they affect you can have immediate access to good information via the Vasculitis UK website which covers all of these disorders or the Vasculitis Foundation of America which also covers these disorders and gives detail about symptoms and how to get a proper diagnosis.

      Effects on the central nervous system can cause the kind of symptoms described as it did with me due to inflammation in the brain stem. That doesn't show up on scans etc. Happily it is treatable and I have been without symptoms of this nature now for 4 years.

      It does not mean this is the cause if your symptoms Sinead. But it is an avenue worth looking at if you are not finding solutions to your current issues.

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