I've posted in here a few times and met some wonderful people with great words of advice however I'm still really suffering!
I don't know what to do or where to go anymore as I've had quite a few tests some that have come back normal and some that have not, I've had ct scans which are normal but never had an Mri, I have been having dizziness for about 6 months now with not very much let up or break, I have tried numerous things to try and improve it and nothing works.
I'm getting myself so worked up about it as I have 2 young children to look after and need there mum to be well, I have been to the doctors to many times to count and they don't know what is wrong with me I'm sure they think it's not as bad as it is but honestly it is, it's getting to the point where I can hardly stand up for long periods of time and I am having to walk holding on to walls etc, I even feel dizzy when I'm sitting down, yesterday I felt as if the blood was draining from my head to my feet and went all lightheaded luckily I was sat down at the time as I think I may have fallen otherwise.
I don't know where else to turn all I know is I just want to sit and cry it's that bad. Xx
Hi. Emma ,,i know how you fel, but my sympathy and understandng wont help much i know. when you say you've been to,loads of drs,,are you talking about gp? hAve you sseen a neuro otologist yet? Because really ifyou haven't you need to see. A specialist in vestibular problems, a gp or ENT even will not be much good to,you. Can you,let us know whomyou've seen?
Hi Emma , like other s , I know how you feel , it's a horrible illness and unless you have had it , no one understand , I've been like this since October , I'm sure the doctors don't realise how ill I have felt with this , I'm so anxious to , which don't help , I want to get back to work but just can't see it happening , I have 2 beautiful granddaughters , who I look after , but can't at the moment , so it must be hard for you with young children , I'm having a MRI scan wed ,though but it's been a long wait , audiology as well , I first had this in 1998 and it did improve after a while , but I just really wish I could find answers to be able to help myself , I also feel like I'm on a boat when I'm sitting down ,, wish I could say something to help you now , just hope things improve for you soon , take care
i really understand where your coming from ive been suffering for 19mths ive had all the tests lost my job and virtually housebound ive give up trying with the doctors i paid to see a specialist no use paid to see a homeopath no good even gon for healing and acupuncture i havent had a diagnosis they really should start looking into this dizziness more cos no1 knows nothing hope you feel better soonbute x
I also agree with Alison , so many doctors have told me , that dizziness and bppv is so common , so why don't they look into it a bit more ,
Hi Emma, I fully agree with Gillian, a neuro otologist is the specialist you do need to see. I cant recommend the balance centre at Medway Maritime Hospital enough, the team there including the consultant are fantastic in thier understanding, advice and support. You need to get your GP to refer you, they see people from all over the UK and beyond. Take care now. Jan.
I've had 2 ct scans, seen 2 ent doctors, had a echocardiogram, 24hr heart monitor, had a wisdom tooth out, seen maximillo facial doc, had 2 scans on my neck, had a camera up nose & down throat, physio, accupuncture, nuerologist back in 2014, im taking sertraline, propanranol, Stematill (occasionally), folic acid and having b12 jabs due to low blood tests last week, seen my own gp about a hundred times (well feels like that anyway) and they don't know what it is, waiting to go to a balance clinic & see nuerologist again and nothing still the same as I have been they pin it on anxiety but I'm only anxious because I feel so bad not the other way round..! The ent doc was pretty useless tbh he was pretty vague, they just don't seem to understand how bad this is or can make you feel x
How long did you have to wait for your mri? I had the opportunity to have one last year but freaked out when I got in the machine I'm so determined now to be brave and just do it for peace of mind at least x
Oh Emma I wish I could give you a hug I know. How you feel. Plus Ive still got flu which is horrendous. I just try lying very still and taking deep breThs. The feelings do pass xxx
They really should they just keep say that dizziness is a generalised term and it could be caused by so many different things and once they've ruled out the worst then they don't seem to care, which to us who are suffering doesn't help much at all as we are the ones living with this appealing condition which takes over your life xx
I've booked an app for later this morning with my doc see if he can do anything else x
Get him to refer you Emma. I found the journey a huge challenge, but worth it to see the right people for the right help. I too went round the houses with ENT neuro etc etc xx
oKay,well as most of us have discovered all these scans and MRIs really arentvery helpful, just really done to,rule,things out as opposed to,diagnose. and as i've said before ENTs and even straight Neurologists are more than useless. ENT,s. Are just that, Ears, Nose and Throat. they have no real knowledge of the Vestibular system as thy dont learn it, thats why he would have been vague. (I saw two different ENTs and an Audiologist) a neuro Otologist trains an extra 4 years!! and a regular Neurologist is into the brain, not the vestibular system. my experience with the drugs was they made it worse, especially Propranol and the Stematil is just for nausea i believe? The balance clinic may be mire helpful Emma, so give that a try. also for anxiety that this conditon causes (And NOT, as you say the actual cause of the physical,problem as I have told them all countless times, they don't like me saying it cos they know its true)! i did find the Cognatve behaviour Therpay usful despite my own misgivings, for the anxiety,,so,if youre offered that. Take it! But you relally need to bang on about seeing. A Neuro Otologist Emma!!
Hi Emma. Jan and Gillian are right. A regular ENT isn't necessarily the specialist you need. They often stop at the first sign of it being difficult to diagnose. A good balance clinic that tests more than your ENT can be the answer. My physical therapist saved my life. It's an ongoing process and I am not done, but I am improving a little bit all the time. Before that I had to take Valium every day just to function. Hang in there. I also wish I could give you a hug. No one can understand what we go through if they haven't gone through it themselves. We'll be here for you.
HimJan, can you tell me what do at the balance centre that is different from, say, the usual VRT exercies we get given?
Hi Emma , saw the ent consultant before Christmas , she requested it , so about 6 weeks , I know if it s to rule out anything sinister , which I hope it isn't , but my fear is I'm I am going to be left like this with no help , I'm sure my doctor is putting it down to anxiety , I just want to scream at him , it this horrible illness that is making me anxious , not the other way round , I was fine , until October 12 th and wham get out of bed and I'm like this , it's affecting everything I do ,
Emma, hugs to you first of all. Apart from some of the great advice you've seen here, I also suggest that you do your own research on the Internet. As you research (and I know it's a pain in the bum), you will find that there are some things you can strongly identify with and others that you may wish to ignore. When you find something that makes you go, "wow, that sounds a lot like what I have", take notes. Write the condition down, what kind of doctor specializes in it and perhaps bookmark it so you can return. This will help you to narrow down who you need to see.
In my time, I have seen LOADS of doctors and some of them were uncaring, said belittling things and some just didn't have a clue, or did not believe me. One big-time surgeon here said, "hey, it's not so bad to feel what you're feeling once in a while". He made it sound like he was trying to be cool with me and that he did recreational drugs in his teens. I never forgot that. I hated the feeling which I had ALL the time. It could not be turned off. I'll never forget the doctor / prick.
So, arm yourself with good info, then tell your GP to get you referrals to the right doctors. Not all doctors are good. I've seen some that left me thinking, "how the hell did you pass the exam? He must have cheated".
Unfortunately, the initial stages means you'll have to go through lots of tests to rule out the dangerous stuff. Then you can zone in. You cannot expect doctors to give you proper advice if it's not their "thing", so you do your research and arm yourself, then go marching on!!
As for an MRI, it was horrible for me too. Ask questions. I had my dad come in with me and occasionally stroke my foot to let me know he was there. See if you can get someone to "help you through" it. I know it's hard and I don't think I will ever go through another MRI myself!!.
Be strong. You can do it.
Hi Emma
I wanted to add my two cents to these conversations.....first of all, hugs to everyone suffering with this nasty illness. Its like no other...and unless you've experienced it, you have no idea.
It really sounds like you have labyrinthitis and/or vestibular neuritis. It is usually caused by a virus that damages the balance nerve. Once the damage is done, it is not reversible...HOWEVER your brain can learn to compensate so that you can function normally again.
I had laybrinthitis in 2008...it lasted 2 years. It DID GO AWAY. I was fine for 5 years and it came back again but this time only for 4 months. I have been told it can rear its ugly head again and again especially during a stressful time or an illness that weakens the immune system.
I UNDERSTAND how much anxiety this illness causes. I saw a therapist to learn coping techniques, i saw a rehab specialist who gave me exercises to do to retain my brain, i took anxiety meds, i saw a chiropractor for the neck pain and i took help from anyone who offered it...family members and friends.
I cried every day and I was a different person. BUT IT DOES GO AWAY.
I had every test under the sun, saw all kinds of doctors and felt alone and frustrated.
I am still taking a very weak dose of anti depressants to stave off anxiety. I am living a normal life now but i know it can come back. See a vestibular rehab specialist and do the exercises you are given. They make you dizzy but eventually your brain will learn to compensate for the mixed signals it is receiving from your good and bad ears.
Take extra vitamins to boost your immune system and dont be afraid to try something for the anxiety. You WILL overcome this!! Take care of YOU!
Hugs
Debbie xx
I am on these boards a lot and I am going to give the same advice. Look up verticle Heterphoria, it's an eye condition. You average eye doctor can not check for this. ALso....do you still have your widom teeth? There is a board where people talk about have the same problems as us ( I have been spaced out for over 4 yrs non stop ) Once they took theor wisdom teeth out they felt better. I am going to have mine removed today.