Dizziness & Vertigo Support Group
Dizziness is the sensation of instability. Vertigo refers to dizziness with a sensation of motion. Vertigo is more likely than other types of dizziness to be associated with nausea, vomiting, or double vision, to occur even when lying down, and to feel better with the eyes closed. If you are a frequent sufferer of dizziness or vertigo, join the group and find support.
I was diagnosed in Sep 2014 with CSD.
It started March 2014 with a couple of strange imbalance feelings every few days or so they became much worse.
I saw 4 GPs who all said viral labrythitis and gave me stemitil and it would pass soon.
it took 13 weeks before a referral was sent for ENT appt.
It started with imbalance feelings. sickness , very disorientated and blurry vision ,nausea, hot and cold sweats, shaking, ear pain and fullness in both ears with slight tinnitus.
My right ear cleared up completely but left ear was constantly clogged and caused a terrible imbalance sensation which then caused panic/anxiety as I did not know what was happening. I never have suffered with any kind of anxiety before this started.
Finally after 6 months I got to see ENT. told if I was private I would have got seen quicker. that was a nice greeting. He done hall pike test and had me walk in a straight line .(at this point I was very unstable and found it hard not to fall off to the left. He also shook head left/right fast and it caused nystagmus slightly. He sent me away for MRI without contrast and balance and hearing test. Guess what! They all came back normal. He would dismiss anything I said regarding my ear and said I need to take fluextine tablets for 3 months and I will be fine and said I have CSD.
I had a terrible reaction to these tablets including pins and needles, a massive panic attack( never in my life had I experience that and to top it all off they made me dizzy while already having an imbalance feeling anyway and did not even know who I was or my surroundings on these meds. I quickly stopped these meds after 17 days.
I went back to GP and had a nasal spray which helped finally unclog my ear for the first time. I also cut out milk as this seemed to clog it really quickly.
GP visit again as the specialist has given up on me already and put me back in GP hands. This time I am on amitriptyline tablets 20mg a night and so far been on them nearly 4 months. I had used this meds many years ago after a head injury so I knew I had no sides from these except dry mouth.
I am due some blood tests next week and a referral to see a neurologist . about 4 month wait ive been told. what a surprise.
Ok so where am I know.
I exercise 5 - 6 times weekly, 50 mins weights and 3 mile walk on treadmill with weights. I am a smoker but do not drink. I do VRT exercises 3 times daily, eat well and try not to avoid anything. I still have visual vertigo which is the most annoying part of it and my work is based on computers so I get a tripped out visual imbalance feelings hitting me every few mins for the duration of my shift. My work friends notice when this happens my pupils are growing massive and shrinking again. Sometimes in shops I find it hard to fully focus on the shelves. too much going on there. The amitriptyline has helped to ease the sensation of the feelings but they are there still everyday. I have a pull on my face from left ear to left eye that's very intense when doing my VRT exercises. I am certain something is wrong with this ear right where you can put your finger in that little gap but Drs are just not prepared to listen. My imbalance sensations are only happening around the ear area and my left side only. I am not dizzy and never have been. the floor does not move around me or anything.
anxiety rated out of 100 I would say about 1. only ever get anxious when I get the strange feeling happen.
I have made improvements over the last 10 months. no more nausea or sickness. right ear fully normal but I can tell and feel a difference between the two ears.
I can stare at object and put feet together arms out close eyes and I will fall forward and left.
I continue to take meds and exercise as much as possible and will not sit down through the day. I do every bit of house work I can. I have 2 small children to look after and continue to work regardless as I believe more motion as horrible as it is has to be good for you. I also never have headaches or migraine, done the epsley manouver myself while waiting for ENT appt. I even tried headstands to shake it off but it just wont go away. Anyone else have anything close to this or relate or have any suggestions please please please I just want to be me again.
It started March 2014 with a couple of strange imbalance feelings every few days or so they became much worse.
I saw 4 GPs who all said viral labrythitis and gave me stemitil and it would pass soon.
it took 13 weeks before a referral was sent for ENT appt.
It started with imbalance feelings. sickness , very disorientated and blurry vision ,nausea, hot and cold sweats, shaking, ear pain and fullness in both ears with slight tinnitus.
My right ear cleared up completely but left ear was constantly clogged and caused a terrible imbalance sensation which then caused panic/anxiety as I did not know what was happening. I never have suffered with any kind of anxiety before this started.
Finally after 6 months I got to see ENT. told if I was private I would have got seen quicker. that was a nice greeting. He done hall pike test and had me walk in a straight line .(at this point I was very unstable and found it hard not to fall off to the left. He also shook head left/right fast and it caused nystagmus slightly. He sent me away for MRI without contrast and balance and hearing test. Guess what! They all came back normal. He would dismiss anything I said regarding my ear and said I need to take fluextine tablets for 3 months and I will be fine and said I have CSD.
I had a terrible reaction to these tablets including pins and needles, a massive panic attack( never in my life had I experience that and to top it all off they made me dizzy while already having an imbalance feeling anyway and did not even know who I was or my surroundings on these meds. I quickly stopped these meds after 17 days.
I went back to GP and had a nasal spray which helped finally unclog my ear for the first time. I also cut out milk as this seemed to clog it really quickly.
GP visit again as the specialist has given up on me already and put me back in GP hands. This time I am on amitriptyline tablets 20mg a night and so far been on them nearly 4 months. I had used this meds many years ago after a head injury so I knew I had no sides from these except dry mouth.
I am due some blood tests next week and a referral to see a neurologist . about 4 month wait ive been told. what a surprise.
Ok so where am I know.
I exercise 5 - 6 times weekly, 50 mins weights and 3 mile walk on treadmill with weights. I am a smoker but do not drink. I do VRT exercises 3 times daily, eat well and try not to avoid anything. I still have visual vertigo which is the most annoying part of it and my work is based on computers so I get a tripped out visual imbalance feelings hitting me every few mins for the duration of my shift. My work friends notice when this happens my pupils are growing massive and shrinking again. Sometimes in shops I find it hard to fully focus on the shelves. too much going on there. The amitriptyline has helped to ease the sensation of the feelings but they are there still everyday. I have a pull on my face from left ear to left eye that's very intense when doing my VRT exercises. I am certain something is wrong with this ear right where you can put your finger in that little gap but Drs are just not prepared to listen. My imbalance sensations are only happening around the ear area and my left side only. I am not dizzy and never have been. the floor does not move around me or anything.
anxiety rated out of 100 I would say about 1. only ever get anxious when I get the strange feeling happen.
I have made improvements over the last 10 months. no more nausea or sickness. right ear fully normal but I can tell and feel a difference between the two ears.
I can stare at object and put feet together arms out close eyes and I will fall forward and left.
I continue to take meds and exercise as much as possible and will not sit down through the day. I do every bit of house work I can. I have 2 small children to look after and continue to work regardless as I believe more motion as horrible as it is has to be good for you. I also never have headaches or migraine, done the epsley manouver myself while waiting for ENT appt. I even tried headstands to shake it off but it just wont go away. Anyone else have anything close to this or relate or have any suggestions please please please I just want to be me again.
It's good to pursue professional opinions but they often don't know what to tell you if it goes on for more than a couple weeks or months.
The panic and anxiety is normal because you feel like you're falling and cognitively, it takes time to learn that you are not dying.
Fullness sounds like fluid but I don't really know. Did they see excessive fluid? Could be viral or Meniere's-- takes a number of incidents to know that, from what I read.
You can still exercise and work, which are both great signs.
Pins and needles where -- in your body or on your face? Latter would indicate facial nerve issues: maybe jaw problem in need of dental specialist. Elsewhere, better do an MRI and look for brain issues, maybe see a neurologist.
Like I say, we can't know -- just throwing common considerations. 300+ possible causes of vertigo I once read. Hope you feel better and find some direction. Keep a journal and look for patterns.
In this enviorment after a few hours it will knock me for six with the slightest movement from myself and a vertigo attack happen with my vision.
My pupils go huge then small again and then it will repeat until I leave the building and ruin my evening when I get home.
My eyes all tested fine.
Worked there years and never had an issue till I caught this virus. My left ear is painful to lay on and I would love to chop it off.
Im back to ENT in 2 weeks to see what he has to say for himself. Blagging me off with tablets and leaving me in GP useless care, he should be ashamed of himself, yet he is called a professional.
Im not expecting much after last time. First time I was so excited expecting to be fixed, how wrong was I.
My eyes are working overtime with a smash in the side of the head imbalance sensation over and over all day long.
Pins and needles were due to meds he put me on. stopped taking it and no issues there.
My jaw is fine no TMJ here , Migraine I get none, never have and im not falling for the old migraine related crap if he pulls that card next.
I have another exhausting minimal NHS death sentence wait of 18 weeks for the nuerologist.
I wish I worked in a profession where I could make them wait that long each time for an appointment.
I would even pay more national Insurance or a separate donation to NHS each month if it meant waiting times were much less. 4 weeks should be the Max wait time for anyone to wait.
Updates to come in few weeks. I keeping touching wood but its not worked so far.
Im doing much better around lights as moved to a laptop instead of monitors and limit the time spent on them.
No probs in shops for a while now but overall my head imbalance sensations have got much much worse.
Never had probs in the dark either or driving my car unless I go up and over a bridge really fast like on the motorway so do my best to take normal roads and stay at 30 and im fine.
I do nothing different then wake up and im completely messed up for 5-6 days until I start getting more manageable symptoms.
Im at a loss. I get heavy movement spells even when sitting completely still, my eyes just get a huge WTF sensation and it just wont go away.
Im off to Bupa to pay private for a neurologist as I can not wait anymore for NHS I think my brain is going to explode.
Please let me know how your therapy goes and I hope you get to fully recover soon.