I had surgery in 2014.

Hi Gillian. Thanks for that, I have never heard of a Neuro Otologist, maybe you could help me on that one please? Also how do iget appt with one Please. Im in the proccess of changing GP as i was so pooly this week and my surgery refused to let me have home visit! I have never asked for home visit in years, and feel very let down when feeling so unwell. I was so poorly i couldnt lift my head off the pillow with the terrible headache i had. Do you suffer with bad headaches aswell? Many thanks Carol. X

In the beginning I had the same problem, they would n,t send a home visit gp, but I got really pushy and as I have to walk to my gp,s and said I could barely walk from my bed to,the loo,,they ended up,giving in!!!mind you it didn,t do me much good, I justgot some anti b,s off him, (with a fight as I got the 'oh it,s a virus' stuff).  the. When I felt better enough the following week I went in and that,s when I got the ENT referral...eventually. are you In the UK?

I did, and sometimes do get headaches from time to time but I think,they come from tension,me specially in the neck, so,I use heat pads or those wheat things a lot on my neck.  I use cold gel packs or that Cool,head sticks  in the Poundshops, got camphor in I think, to put on my head aswell.  Plus Paracetomolds plus, those three things help the best for that. Keepung my head propped up,on pillows too helps.

Will try these Gillian, im prepared to give anything ago, i just want to feel well again. I feel like im housebound almost, cant drive to see my grandaughters, wish i so miss. Its very debilitating. X

Yes im in essex Uk. In the end the manager of complex i live (retirement village) called out the paramedics who where great.So great they took me to the Drs surgery.

Hi Gillian,

I've read all the replies before replying.

I had balance problems I could cope with for years and was starting to think I'm dyspraxia when I had vaginal surgery 20 months ago with general anaesthetic etc. I know they position you diagonally with head at the bottom for the op. I woke up really dizzy which they told me was normal only this for worse with chronic tiredness. After blood tests I was diagnosed with Hypothyroidism and as that can cause dizziness concentrated on getting that under control, but it just got worse.

I think surgery puts the body under so much stress that anything that was minor can become a real problem.

Last March I had an episode where I woke up unable to lift my head without the room spinning , rang 111 (mobile next to bed) and ended up in A&E. After outpatient staff told me it was a GP issue and basically accused me of malingering I was in for 2 days (inpatient staff lovely), had both CT/MRI which were clear and diagnosed with BPPV and stabilised enough to go home on Stemetol (Prochlorapromizine).

The BPPV has almost gone but the dizziness, tinnitus, plus rumbling, nausea, head and neck pressure, brain fog and tiredness are still here and have had numerous falls.

I wasn't given an ENT appointment when I left hospital and had to fight for this at my surgery. After much rangling  I got a cancellation a couple of weeks ago and saw the top consultant, who told me I've had Labyrinthis which has caused irreversible damage to my vestibular system which can be helped significantly with btrain retraining, will probably have to wait months for the rehab appointment for this but all the exercises are online.

They also told me to come off the Stemetol as all medication is counter productive, as even in everyday movements help retrain the brain but the meds don't allow this. Having been told I'll be worse after no meds, I'm in bed with exactly that and getting over an ankle sprain after another fall.

Sorry this is so long but also wish to say, reading the rest, that I have many other health problems around digestion, allergy and hormones and so do others. There's so much in medicine that needs to be discovered and a blinkered approach to holistic diagnosis and treatment that just maybe there's an autoimmune factor at play.

Thanks for all the info on Otologist. I'll also look into it

Hi gillian. Im situated in Colchester Essex. i was originaly prescribed Prochlorezazine, but my daughre who is a ward sister recommended i should ask for something else as long term they can possibly cause Fits!!not sure if the betahistine do anything other than give me stomach pain and also think they cause sick feeling. Did you wait long for appt with neuro otologist? X

Oh okay.  Well first, re the Neuro .otolgoist. Hve a look on line at yourlocal  hospitals, then Google the hospital name, adding. Otologist consultants (leave out the neuro bit for now in the search just to see what comes up). see if there are any.m Then gather the info and go to your gp or  maybe your 'new'  aren't happy. With your present one, Nd ask for a referral.m The drug you mention,,they tried me on that, didn,t help, infact that,s one I had reaction to. I wouldn,t  not bother with any of the drugs tbh especially if you are affected wi side effects. Which you should tell,your gp about and nine times out of ten the they say stop taking it as they don,t want you to get sickened it then is their fault!!  In had bout a 3 month wait for my neuro,otolgoist. At a London Hospital. 

Thank Gillian, i googled Neuro otolgoist for Colchester and i get Neurologist, so am guessing none in Colchester Essex. Do you stick to a diet, ie no chocolate coffe cheese etc? have been told to avoid these pluss lots of other foods?

I cut out caffeine, chocolate, cheese, alhohol, aspartame, cut down on other artificial sweetners and been taking suppliments for nearly a year now and still getting worse by the week. It is still worth a try though.

Don't know if it is true but I have heard that otologist has 4 more years trainingg than and ENT.

I like you have cut out choc,cheese,coffee,artificial sweetners, but do have glass of white wine. What have you been diagnosed with Jason?

I am Bi-Polar and in the past year I have been diagnosed with Vestibular Nueritis, Severe Sleep Apnea and I am now suffering migraines/headaches most days. If you click on my forum name you can view my posts and posts I am following for more information and help from others too.

Ok, will do.

Yes Jason it is true, and they specialise in the vestibular system, whereas ENT is more the ears only, hearing, glue ear etc etc. To be fair my first ENT appointment years ago, did do a few of the balance tests same as ones I had done at NO recently  but the latter did more, also the consultation time was an hour ! And after the tests which also took an  hour, I went back to the consultant who by then had the results!!   Inconclusive in my case, but they said there was definitely  something wrong, whereas ENT just shrug their shoulders and send you home with a packet of pills or more physio,,and come back in 4  months!!,,,,

Try Putting In justnOTOLOGIST first  and see what comes up.m Is there another hospital in Essex I know Broomfield in Chelmsford as I used to,live in Essex.  You also,have a hospital I. Basildon ??.  You may have to travel tbh.   Imdon,t stick to. Diet per se as I have another problem with. Y gut (Crohn's disease) some have to adjust my diet a bit for that.  deffo cut out dairy as that causes congestion,many with this problem you do not need that! I use Oat  milk (avoid Soy If I was you),myou may prefer rice or almond milk.n If you really have to,have a bit of cheese once in a while, make it goats or sheeps. do eat a bit of chocolate,my it plain only!!! And if I have coffee it,s decaf which tastes the same to,me anyway,more imhave a coffee substitute which is an acquired taste but I am used to it now.  I don,t drink booze anymore as it makes my head worse, and Don,t miss it tbh.

Thanks Gillian, I will try that. If i cant find anything i will chat to my daughter as she is nursing sister down at Southend Hospital. I do try not to involve her, being in the medical proffesion i steer clear of talking about myself to much, if you understand what i mean. We will see what comes of my visit to ENT on monday.

yes understand re family etc!  maybe just ask her if her hospital has a Neuro Otologist,make your request simple and she will,probably be happy to,check that for you. Then you could take it from. There?  also Google the Broomfield as they,re a big hospital,and may have one.   Don,t expect too much from ENT (who knows you may be pleasantly surprised!), it will just be questions to start and a hearing test first probably, then a look in your ears, not much. they may try  Giving you drugs, then send you away til next appointment, often 3 months at least, even though you may find the first few days the drug doesn,t work or has a reaction, then Wait for all,that time to go back and say, ' no good,!!!  (Meanwhile all this time is ticking by!) Just say you have a bad reaction to drugs these days.  they will,probably suggest sending you off to,physio!!