suffering with labyrinthitis for 7 months now...

hi i have been suffering with dizziness for years,seen ent docs,who most of the time have not been very usefull,however i saw a doc who has a specialised interest in vertigo,wich thats what yours sounds like,cause i had the dizziness when i lay down(the room would spin).when i got a referall to dr umapathy,she diagnosed bpv(benign paroxysmal positional vertigo) and i had the epley maneuver

hi thanks for reply the epley maneuver doesnt work either. i still do it though. i have heard people suffering for years even my mum did which i see a specialist she has been seeing but still no use.

i know,its so bad ,i went to see a neurologist last night,had brain and neck scans but both ok,sometimes it drives me mad been suffering for 10yrs plus,it really does affect your life,if you find anything to help please let me know,

hi tina have you had a mri scan done?

No not yet and that's what makes me angry. I work the NHS and still they haven't offered me an MRI scan. I seriously think there's something wrong in my head as the pain is there all the time and feels heavy and eyes and ears always hurt. Been to see my GP so he writes back to ENT to ask for an MRI. Let's see what happens. makes me angry as I told them that I can't brag the pain and everyday life get difficult as I am a mother of 4 and have no help.

Hi Tina, Hope you get the MRI scan done soon - sometimes you really have to insist on stuff. I know they should be offering but in my experience sometimes persistence is the only way. Surprised ENT haven't done this before with the symptoms you describe. I had an acoustic neuroma and your symptoms are somewhat similar, but if you have been suffering so long its probably not that. In any case they are treatable and not half as bad as some might make out. Hope you get sorted soon. All the best.

Tina go for the MRI (it will be clear,but just to get it out of your head). tell me exactly what you feel as exactly as it can be. maybe i can help you with my symptoms (Lab for 8 months)..weak eysight,pressure in half front head,while in bed i have the sense that i float in the sea,i can walk but not very stable,when sitting i feel like i'm making a circle with my waist up body,FEELING DISCONNECTED FROM THE ENVIRONMENT like i'm in a bubble which drives you crazy you feel like you will end up in a psychiatric clinic. Gone through depression for 2 months (people kept telling me it's all in my head,even an ENT told me that! ! !)..The truth is that doctors are not very specialized in Labyrinthitis so you got to find the best oriented doc with a lot of research. It was only the previous month i got a definite answer of what i have (aka 7 months of awareness),this doc who told me i have Lab performed to me the Eplay but it was pointless since it has good results only in Benign paroxysmal positional vertigo not Lab. He also gave me Betahistine for one month but no better change at all. Search on the Internet the Vestibular Rehabilitation Therapy,people with Lab have recovered with that Therapy, i will try it too. My next step is acupuncture and the therapy i just said. Anything you want to ask please do! you're not alone,in fact there are millions like us around the world. try not to be depressed!!!! looking forward to hearing from you and every other sufferer!! hope and love to everybody! xxx

hi elli_theo

thank you for the support. The headaches/migraines have gone worse the last couple of weeks and get sickness feeling and nausea with it. I have now had my MRI scan done and results came back clear and also my blood tests were clear.

Today i went to see the specialist again for a follow up and he said he wants me to see someone else for a second opinion a neurologist as ENT had sent me to neurologist who saw me suggested propanolol and betahistine and then discharged me and havent had a follow up from them.

The headaches bother me more than the dizziness as they are there all the time. the back of my head and eyes and neck also hurts...the headaches feel like someone hit me with a baseball bat on the back of my head.its there constantly...i feel like i dont have no energy and it all depresses me so much that i cry at nights and cannot sleep. i feel like i have no interest to watch tv, listen to music and to go out but i try to do this...feel fragile and i can start crying in seconds.. :-(

i am medicine free as when i went to see specialist he asked me to stop as they dont work...

i have the support of family but feel lonely at times...like they dont understand...i get snappy, have a bad mood,shout without wanting to sleep...i have 4 kids and i struggle doing the normal stuff at home the headaches feel like someone hit me with a baseball bat on the back of my head.He has also suggested some changes in teh diet and showed me a list of foods which i hardly consume and some i dont consume at all. Right now i am also suffering financially as i am off work...makes things worse...

Hope things are better with you elli_theo

take care

tina

Tina email me at elli_47@hotmail,com so we can talk easier!! i'm waiting take care xxx

I have a suggestion for both of you. You've both been through the mill on the allopathic medicine front and elli you're now thinking about acupuncture which is a very sound way to go and a good start However, has either of you heard of EFT? Stands for Emotional Freedom Techniques. It is extremely simple and involves tapping on what are basically acupuncture points on the face mainly, but also the hands/fingers and a couple of other spots. Tina - you are I think very stressed/depressed and not surprisingly and what EFT does superbly, is bust the stress. Once changes happen at that level, you may well find the knock-on effect tackles the labyrinthitis. EFT's motto is, it often works when nothing else does and successes range from a simple headache to ocular migraine, through things like bladder issues, high blood pressure, constipation, even to cancer. If either of you would like, I can show you via Skype and then you can take it further with someone local - free of charge. I'm a qualified practitioner who hasn't got round to practising yet so I know what I'm talking about and on a personal level, it helped me - hugely - through cancer and then a horrible all-over skin rash called lichen planus the following year. The website for EFT is EFTUniversedotcom and if you search for dizziness you'll find some actual cases. Interestingly the one I had a quick look at, says:

Okay. Sally has struggled with this dizziness and sometimes vertigo since about the beginning of May, for about three months. And it has been quite disabling, to the point where she had to stay home from her job. She couldn't even be at work. And she has gone to every doctor for all sorts of tests, including MRI, Eye, Ear, Nose and Throat specialist, chiropractor, acupuncture, everything. The only positive diagnosis they seem to have come up with is something called Meniere's Disease, which is not actually a distinct diagnosis. It's more a collection of symptoms.

That's an excerpt from a dialogue between a therapist and Gary Craig who founded EFT. I'm a 64-year-old retired woman by the way.