Possibly have CFS?

Hi you are at the beginning of a journey of diagnosis but basically if everything comes back ok you've got cfs ... The spinning is a symptom and will subside as u recover and will come back as a warning if u over do it ...once your doctor has exhausted all avenues ask to be referred to your nearest hospitals m.e/cfs clinic or specialist for a diagnosis and treatment which is a mixture of therapies... How long you have it ????? Is the big question but the key to recovery is not to fight it not to force your body especially now in the early stages .. In many ways yours has hit you suddenly and violently which has stopped u in your tracks.... Some have it creep up on them over years worsening and then u fight it unaware of its potential deadliness at its worse... Action for m.e. Website is excellent lots of info .. So sorry you are suffering but you will improve but very slowly sadly 

Hi there,

I had labrythititis a long time ago and suffered ongoing flair ups. I too had some hearing loss in that ear. My doctor told me that I was one of the unlucky few where it is recurring. One flair up had me falling to one side (the virus attacks the inner ear where balance is centred) so, blood tests were done and the only thing that came up was b12 deficiency which I got treatment for and the symptoms went. Because it affects balance, nausea, the feeling of being at the top of a roller coaster, dizzy and of course panicky-were all symptoms of it for me. You say about when you get up it feels like the world is spinning and that was a symptom for me. I used to grab hold of the bed momentarily terrified! It was a scary time and I'd often wake in the middle of the night feeling i was on a rollercoaster. That awful feeling that wasn't real, so bizarre!

The cfs/me I got totally separately 15 years later. For me those symptoms are exhaustion, unrested after sleep, memory issues, shaking (when bad day) fibromyalgia pain, slurring, mind fog etc.

It could be you have both? Or even something else. I was sent for an mri scan for the labyrinthtitis but certain sound frequencies would set it off and I had to stop it and fell to one side when i sat up. I don't know If this will work for you but, if it started up due to say certain music, I put my finger in my ear for about five mins and when I take it out, my ear stops reacting. It sounds ridiculous but, it works for me! I went to the west end to watch Chicago the musical a few years ago and it took a while to settle the dizzying in this way but I managed it and managed to watch it symptom free. When I first arrived I felt so ill with all the noise I thought I'd have to cancel. My heart was racing, I'd gone cold and felt like I was going to be sick. I was fine before we went in! And was fine after the finger treatment. I think it somehow resets the pressure inside the ear? I hope you can get some reassurance on what is going on for you as both conditions can be scary. If you haven't had blood tests yet, I'd ask about them to rule other things out.

Hope this helps

B

l had a couple of bouts of labrynthitus a lot of years ago, at that time l was having severe symptoms which later were diagnosed as intersticial cystitus the labrinthitus was there on waking walking to bathroom a weird feeling, l was falling over to the side and had to hold on to the wall, there and back, gp diagnosed labrinthitus and told me its due to inflammation in the inner ear and small hairs in there touching balance area. It did settle but later got vertigo, at coast watching bungee jumps and l was losing balance, heights a problem avoided, now  mostly settled  but get frequent tinnitus and hearing getting worse, yet intolerant of loud noise.  But in last couple of years l have become so fatigued and battered type aching with it, bad from waking in morning, get leg cramps more often, then hobbling about for a couple of hours, then  can sit down and fall asleep on sofa sitting upright, just gone, wake chilled and off it,  Went into town yesterday, only small area couple of shops but dragging myself, good job shops have  shoppng trolley,s or l couldnt do it, breathless with the exertion, also have memory problems and fog when bad. Also waiting for diagnoses, back to gps again. l think quite a few people battling with severe long standing symptoms and usual tests coming back negative. Anyway l hope you get right tests and diagnoses soon.