Hi I am based in uk. I went down with spinning vertigo 2 years ago - it came from nowhere ( I was fine day before)
I won't go into all details ( anyone who suffers will know) but main symptoms are dizziness, vertigo, light headed - no balance.
I get dizzy when I lie down, roll over, get up - in fact an attack can come on any time!
been to ENT ruled out anything to do with ears
been to rheumatologist - no result
under neuro - had tilt table - negative result
had autonomic dysfunction testing - waiting for results
epley performed numerous times - all failed
i don't know what or where to go next just wondered if anyone had any thoughts with their own experiences? I am beside myself, no life, doctors are useless - keep mentioning anxiety to me - I could scream of course I am anxious as it goes hand in hand with this condition.
Sorry to hear this Sarah......I know exactly how it feels. I get up each morning with what seems like a dreadful hangover head. I have vertigo, tinnitus, my head feels spaced out, full of cotton wool. I feel as if I'm standing outside the world, looking in....my brain is in a dream world, but I don't like the dream. I had an MRI scan last Friday, so awaiting results. It's Monday now, and I've heard nothing, so hoping no news is good news!
Thanks for the info! I too am suffering. Woke up with BPPV the same day as I was diagnosed with chest infection. My doctor tried Epley twice, producing nystagmus, but still got vertigo, along with tinnitus, fatigue, sensitivity to noise (even a text notification), confusion, and waking up with a hangover head without the alcohol. I had an MRI head scan Friday 24 June, and got appointment with ENT in two weeks. Any thoughts plz?
Thank you I had 2 MRI scans both negative. I paid once but I can't afford it anymore spent £3k on private treatment. They haven't even mentioned positional vertigo or compression of cranial nerves. Funnily enough I now have neck pain but only when I press my neck at the back. I get terrible brain fog so sorry forgot to mention the MRI in it. I am so bad today doctor is coming to see me at home - I can barely walk. The scans were a year and 2 years ago - you are very kind xxx
oh iris I do hope you get some news. I did have two MRI scans both were negative for me. Same as me can barely walk today. Do you manage to work? I went part time last year but I can hardly manage that xxx
No I don't have it and I doubt they will let me get it! They have just prescribed cinnarazine 2 tabs X 3 times per day. Told me have to wait for results of autonomic dysfunction testing. Your are so kind. Where are you based if in uk do you do private consultation? X
I feel for you I really do, it's been since September 15 for me just started all of a sudden when I went to get up off the sofa when my son was 5 months old, I couldn't focus and I was so off balance it was unreal, it completely made me panic I thought I was dying!
I've had 2 clear ct scans, had a private mri Jan this year which was clear, seen ent, had echo's, 24hr holter, been to a balance clinic, tried all the drugs under the sun, recently saw neuro who thought it could be vestibular migraine as I do get headaches so going to try different meds and refer me to a hearing physician as they are best to deal with dizziness apparently! I to am in the uk and don't have an endless pot of money to through at different docs but like you had so many tests but no conclusive results!! I've had scans on my neck, accupuncture, physio and seen a chiro lol I feel like I'm driving myself mad sometimes! They to have played the anxiety card and yes of course I'm anxious because I'm dizzy! I get a horrid pain in one spot at the back of my head to which they think is tension!!!! Yes because I'm stressed lol
I got my mri results on a dvd but never looked at them, I have tmj to which could be contributing to the tension but I doubt it's making me dizzy as I've had it 6/7 years xx
Greetings , my name is Freddy and my case is "similar" , first of all I want to say that Vertigo is a complicated illness but not terminally ill, is very common in the world that affects all kinds of people. Vertigo has multiple causes and multiple conditions. In my case when I was a child, doctors detected vertigo caused by middle ear problems , I had migraines often. Episodes of vertigo are repeated throughout my life , these are cycles where some time I'm completely normal and sometimes I suffer vertigo. like your Sarah, In a time when I was completely normal I woke up one day without balance, disoriented, with vertigo. I was lying in bed without moving one month. When I was better, I went to the otolaryngologist and diagnosed me Benign paroxysmal positional vertigo (BPPV) The neurologist sent me Paxil and diagnosted me panic attacks... actually I'm with panic attacks.
I hope you get better soon , I know it 's horrible but you have to be strong !. Remember that after the storm comes the calm .
Hi Emma you poor thing how on earth do you cope? I feel lucky to have only my husband to worry about. Very similar to me. I am under balance Clinic in Leicester now - got to have heart scan think they said echo? Had the 24 hour monitor and was told all ok. However today another doctor told me it was given very different readings! My blood pressure was 90/49 today. Bloody nightmare getting through to them about anxiety. Must admit I said to the doctor today "you think this is n my head " and you don't believe me! Sorry what is tmj? Got ruled out for vestibular migraines although not convinced xxx
Sarah .... I send you a lot of good energy and I understand you. Remember that in the world are worse diseases...
I tell you that I´m with panic attacks and constant vertigo about 3 months, the doctor told me that problem is not something psychological, it is physical...
Just remember you are not alone and all of us have a purpose, this problem is a test in this great journey called life.
Now on my third bout of VN. First when I was 30. And then one at 40. Now one at 65. When I was 30 I was completely left to heal by myself as they out it down to anxiety. Lucky I was young and coped although I always had residual symptoms. At 40 I was seen by a neurologist who knew a good bit about this, but still no name. Still my doctors did not understand, there was not any vrt available or offered. Again it was up to me. After writing to the doctor because they had lost my records I was informed that these 2 attacks were VN. Now they are still trying to tell me I have anxiety giving me these symptoms. They do not seem to be bothered to look up the condition. Once again the anxiety is excessive. I was given amitriptyline and after 7 days on 5 mg I was worse with such terrible side effects. I have not taken any for 2 weeks but my sleep pattern will not return. Before this med I was sleeping 8 hours a night. I firmly belief the initial infection must be give before vrt starts. When will all these docs realise anxiety is part and parcel for at least 50% of people affected. I have been given mirtazapine but after the amtriptyline I think I have enough to deal with. I am trying to cope with anxiety and panic attacks with Bach rescue remedy, which works for me. Balance is really off today. stomach is churning, neck is tight tingling sensations. Top this all I am not sleeping. Have to say for the 25 years since my last attack I did improve and was doing lots of things and leading a busy life. Anyone use anything for sleeping. I wish I had never touched amtrip . Does anyone get a brain clear during the day. Some days my symptoms nearly disappear between 4pm and 6pm , still have balance issues.