Well here it goes my first draft on "a rough guide to labs" and what you can expect to happen when u are going through this condition! Im not really going to go over the symptoms of the condition its really just an overview of what happens to get diagnosed and where to get that diagnosis from! If you want information on the symptoms and perhaps some of the acronyms i may use in this draft then please visit Emma and Ilias website (Link at top of site) for the details. Please note that this guide has been written around my personal experience and that of others that i have spoken too - it might vary from case to case but it should give you the general idea! Ok so here it goes:

When you first experience the symptoms of labs you will probally go see your GP or family doctor (In some cases you might go into to hospital as it can be extremely frightening)

Your Doctor will normally take a full medical history from you exploring your feelings/symptoms and then will carry out some basic tests some of which will be neurological to rule out more serious problems!

One of the tests normally carried out by the GP is the dix hallpike manouve in which the doctor will lie you down on the bed and will move your head at a angle to the sitting position (both left and right sides) while montoring your eyes for abnormal movement (Nystagmytus). In most cases if you have some abnormal movement then there is a good chance that you have Labs or BPPV! Although i have to say sometimes you may not exibit any signs at all and this should not dishearten you as your doctor will have to use your history to determine if you may be suffering in that case!

At this point the doctor if you are suffering with acute vertigo episodes will perscribe a vestibular suppressant such as Stemetil or Serc (And some other drugs) for a period of a couple of weeks. And in all cases will probally send you home to rest with the reassurance that it will clear up in a couple of weeks.

Point to note: vestibular suppressants can hinder your overall recovery if you have to take them for a long period of time so only take them for the shortest possible time.

In General Labs lasts for around 8 weeks so in most cases you will be feeling back to normal at some point during this timeframe. Oh but what happens if i do not feel right i hear you ask!

Now this is where our research will come in handy for you sufferers who have had labs for 8 weeks or longer! Generally at this point we are going to push the GP past there limits as most will indicate that this condition can not last this long... This is not true it can and it happens. (Im Proof of that) so at this point some Doctors will then ask for you to be referred to an specialist at this point and normally you will be referred to see an ENT consultant. But wait is there someone better to see! (Read On)

So what do you do! Well i would ask to be referred to an audiological physian (Neuro-otology) who are registar level doctors (Mainly from the ENT field) who have undertaken specialist training in the form of an Audiovestibular medicine degree(s) (MSc) which provides the specialist skills of dealing with the diagnosis, medical treatment, habituation and rehabilitation of children and adults with disorders of hearing and balance.

One of the specialities covered by these doctors is Neuro-otology:

Neuro-otology includes the investigation and rehabilitation of dizziness and imbalance, with or without concomitant hearing problems, in both adults and children. It also includes the assessment and management of tinnitus and dysacuses. Imbalance can be caused or aggravated by pathology in many different systems. There is good scientific evidence that the majority of these cases will improve with appropriate rehabilitation and other medical management, as indicated in each case. However, the care of dizzy patients who do not have access to an Audiological Physician can be fragmented, with the patient visiting one hospital department after another, and no one doctor taking overall responsibility. The Audiological Physician is trained to assess and manage dizzy patients holistically, ie treating the patient as well as the symptom, and effectively providing a service that is satisfying for both doctor and patient with this common complaint.

So what to expect! Well firstly someone who will understand your condition, and secondly a fairly long wait to see one unfortunatley! But when you do finally get an appointment you will intially have a consultation with them where like with the GP they will investigate your medical history and carry out some basic tests after which they will normally send you for comprehensive diagnostic testing which will assist them in determing the cause of your dizziness and identify where the damage to your inner ear is! (I.E Left or Right side Inner Ear) by using various tests such as the ENG (Caloric) etc

After you have had the tests they can now start to formulate a plan to compensate for this inner ear damage and this will normally involve the use of VRT excerises and even the use of a physio! They may also send you for MRI or CT Scanning just to rule out any other neuro-logical problems which somtimes occur. This is perfectly normal and nothing to worry about!

Therefore my recommendation for you longer term sufferers would be to get referred to one of these specialists as 1. They Specialise in our condition and 2. Can provide all of the diagnostic tests required to fully understand your condition and 3. Can Provide you with the necessary programme of VRT to get you on the road to recovery!

Because when you have suffered with uncompensated labyrinthitis the recovery from this condition comes from a structured programme of exercises (VRT) which are established and taylored specifically for you by the Neuro-otologist and physio following your diagnostic testing.

Well i think that just about sums up the processes used in getting a diagnosis and getting on the road to recovery although if anyone has got somethin to add to this then please do!


Hope this helps!

__________________
"Fate, it seems, is not without a sense of irony."




We strongly advise anyone wishing to take up vrt or change/stop medication should consult their doctor first.

I just wanted to add that every time I have seen the Consultant I have not displayed nystagmus following the dix hallpike manouvre , but 6 times out of 8 I've had nystagmus following the manouvre with the Audiologist.
My point is ...I was starting to feel like a fake because I wasn't displaying the "right" symptoms when tested by the Consultant .... so when the Audiologist saw the nystagmus and it was pretty severe it was a huge relief.
So PLEASE don't feel disheartened if you don't have this symptom all the time ...it can vary according to the severity of the attack and doesn't mean anything.

I hope it was okay to add this message but it really worried me when I saw the consultant and he couldn't detect nystagmus.

Sue XX

Thanks for the that Sue its a very good point as i too have had this at various stages of this condition! It seems for me i always get hospital appointments on "Good Days" grrrr

Once again thanks...

__________________
"Fate, it seems, is not without a sense of irony."




We strongly advise anyone wishing to take up vrt or change/stop medication should consult their doctor first.

Just wanted to add. Whether you have labs or bppv the same tests are done to reach diagnosis. The specialist can normally tell from your history if its likely to be labs or bppv eg. with bppv full spinning is associated mainly with head movement though sufferers do experience many of the same symtoms as labs sufferers. The vrt treatment for labs is different to whats needed for bvvp and tailored vrt is usually the best thing to have. Whatever you are diagnosed with, hang in there, the vrt will work but can take time so dont expect a "quick fix", persevere and you will hopefully be 100% better. I didnt show any nystagmus with the dix hallpike but did show a downbeat nystagmus when i shook my head violently from side to side, and this only showed because they used special goggles.

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We strongly advise anyone wishing to take up vrt or start/change/stop medication should consult their doctor first.

J-ames, how long have you been dealing with this and what are your symptoms now? Are you doing any better? It's been nearly 7 months of constantly feeling this way. . . most days I try to keep optimistic but there are some days, like right now, where I just cry because I feel like it's never going to end. I homeschool and stay home with my 5 young children and I feel like a terrible mother and wife because there are some days when I can't do anything but sit on the couch.

I am so thankful I have found this list and that there actually might be someone who can relate to how I am feeling.

I'm sorry for whining; it's just been building up for so long. I haven't had a good cry in a month.

Michele

__________________
~ Michele

Married to Brian and Mom to. . .
Jorie Antoinette (10)
Julianna Grace (9)
Christopher Robert (7)
Katarina Joy (5)
Elisabeth Rose (2)
Emma Rose (Born into heaven June 2003)


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Dear Michele,
Welcome to the site. It's so hard dealing with this with kids, but bless you, five little ones! I know that seven months is such a long time to be dizzy, but sometimes it can take a very long time to get better. The thing is, you will. I had Labs eleven years ago and it took almost three years to get totally well again. I had a reacurrance six months ago, but I am already close to being well again. In between I was able to live life and do everything without being dizzy. I wouldn't give that back for anything. I have three kids who are now 19, 15, and 13. I do remember how hard it was with litttle ones, but they kept me going. The best thing you can do is play, play, play with them. I didn't know that the first time. The more you move around the better your brain will habituate back to normal. Some of the vestibular exercises I do are just like playing. I hope you have been to an ENT and have had all the tests done. Vestibular Therapy is very important for recovery.

Take care and take one day at a time,

Hugs,
:emoticon-sign: Sheri

__________________

Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

Hi Michelle

No worries hun, you post, vent do whatever makes you feel better we are all here for you!

As for your question! well ive been suffering with labs on and off since nov 03 so im just coming into my 4th year with the condition! Dont worry yourself though as most people only suffer with it for a short period and fully compensate, just in my case ive only recently started recieving the right treatment so can now only really start to get better, which to be fair is happening i guess im about 96% better now! just got a lot of anxiety issues ive got to work though. Main thing is to strife to lead as normal a life as you can manage and get you the VRT therepy which is so invaluble to us sufferers.

__________________
"Fate, it seems, is not without a sense of irony."




We strongly advise anyone wishing to take up vrt or change/stop medication should consult their doctor first.

Hi guys,

This is a really important site and im very glad i have found it. not sure if this is the right thead but...!

I had what was diagnosed as labs back in 2002 and recovered after 13 weeks - a full and total recovery. Then in August of 2006 I woke again with it. At least this time I knew immediately what it was and hoped that it would be only 13 weeks again ! no matter how hellish the experience. Incidentally I contracted labs in August on both occassions.

This time I went immediately to the Doctor and got a referral to an Oto Neurologist at the London Clinic, Michael Wareing. He suggested it was likely to get better on its own again and just to deal with it the way I had four years ago. After five or so weeks it still hadnt gone and I asked for referral for VRT - I had this with a specialist Physio in London for about four weeks with no improvement. When I reached the twenty week stage and still being horribly dizzy I invesitgated further. By all accounts and all referrals the BEST (whatever that means) people to see in London, that is the ones doing research into balance and dizziness / disequilibrium (spelling is very bad!) are Linda Luxon (the London Hospital of neurology and nerosurgery, queens square and wimpole street (i think), Marousa Pavlou of Harley Street and Gerald Brookes, harley street ent clinic and london clinic). I saw all three of them (Im very lucky I have excellent health insurance) and I am still under brookes and pavlou. Both brookes and pavlou have a good bedside manner and seem to know their stuff, but they see it every day. I am a person who cannot understand why medicine is not an exact science it is very difficult for me to comprehend that there is no real cure for this, it is the most horrible debilitating illness which affects me in everything i do and worse in that it is unseen. In short they diagnosed me with uncompensated labs - why? no one knows. what virus ? no one knows. what research is being done into this ? very little, it is of no interest to the drugs companies. So I now have VRT with Pavlou, it isnt working so far and I am at week 11 of doing the tailored exercises religiously twice a day, though I have had a period of ten days when i felt it lifting it has come back and with malice.

I suffer the normal symptoms and some which are rarer including wetness, pressure and discomfort to pain in the ear. I also suffer (rarely) tinitis. Though all of these symtoms are less bad than they were in the early months.

My job is such that I need to be on the ball all the time - I am not performing, and make mistakes. my memory has become poor, my concentration worse and I dont think I can really work the 11 hour days required of me anymore. I am permanently tired have no energy and no enthusiasm, so I am going to call it a day and take some time out to try and get better. I only hope I do, am still trying with the VRT but it isnt really doing any good.

It has been almost 7 months for me - BUT I was told by an expert that I have more chance of winning the national lottery than not getting better. so I cling to that. Because if I felt I had to live like this for the rest of my life I would end it all now.

hi marshamstreet

sounds like you have seen all the right ppl to get you on the road to recovery. there is no actual labs virus, if you have a cold or flu or tummy bug or any kind of virus, it can, for no apparent reason attack your inner ear where it causes damage to the labyrinth. once the virus is gone the damage is done and cant be undone. therefore, the brain has to learn to compensate for this and for most ppl this happens quite quickly but for others, the brain doesnt compensate hence uncompensated labs. when this occurs then vrt is needed to force the brain to compensate so the more active you can be without overdoing it the better it gets. if something makes you dizzy, dont avoid doing it cos its helping you get better. if you feel unable to work then speak to your gp about taking some time off or maybe your employer may let you cut your hours for a while. persevere with the vrt. if its not making you dizzy then you need some harder exercises to do so speak to your vrt therapist about that. there is light at the end of the tunnel even if it dont feel like it at the moment and we will support you as much as we can. if you have any questions about employment etc we have a section called employment questions where you can post you queries. good luck.

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We strongly advise anyone wishing to take up vrt or start/change/stop medication should consult their doctor first.

Just wanted to say I am so glad I've found this site! It really does help reading that there are other people dealing with this too.

I am going on my 9th month now. But PRAISE GOD. . . I actually am a tiny bit better! But, the BPPV on the right side came back already so I had to have the maneuver done again on that side this week. Still, I'm thinking I may actually be seeing an end in sight!

Michele (my cat is SNORING next to me!)

__________________
~ Michele

Married to Brian and Mom to. . .
Jorie Antoinette (10)
Julianna Grace (9)
Christopher Robert (7)
Katarina Joy (5)
Elisabeth Rose (2)
Emma Rose (Born into heaven June 2003)


.