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Hello everyone... My name is Sam, and I am a long time sufferer with this stuff. Havent had an episode in about 9 months, until now. I posted a bunch back on pages 2-3?? Cant remember.. anyway,, I check back on here once in a while to see how things are and see how people are doing. I can tell you that the people from page 2 have gone for a reason... You will disappear too.
Feeling quite sick right now.. Just got over some strange flu like illness and now back in the thick of it... ugh... |
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Hi everyone, I'm so glad I found this page. I feel like I've been suffering alone. I've had a constant sense of motion since June. I feel as though I'm swaying all the time, the ground shifts beneath my feet, my head is heavy, I can't concentrate and I am tired of everything. I'm only 20, and while everyone else is looking forward to their future at my University, I feel as though my life has already ended. Everything is so difficult. Originally, I had faith in my ENT doctor as he told me he would get me better. I went three months ago and had hearing loss and on my return this week, my hearing was back to normal so he discharged me and told me to "wait it out". I just want to know how long this will take. I'm exhausted. I try not to complain but life is awful right now. Will it ever go? Has anybody ever actually got rid of this? Sorry to moan. Merry Christmas to all x
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Hey Sally. It will get better. I know exactly what you are going thru. The only advise I can offer you, is simple things. STAY RELAXED. Get lots of sleep. Start eating lots of fruit and veg, and make sure you wash it really good. Try not to over exert yourself. It takes a long time for this illness to go away. But it will. Even today, I still have a sense of motion - altho it is very minor. Hardly notice it. The ground shift is scary. I had that. I still do, but it's a lot less. it took me 4 months to feel somewhat normal. It takes some people 6 months... others 8 months or longer. But if you relax, and relax and relax as much as possible, it will go away faster.
slow steps xo |
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Hi folks:
Been a while since I've posted. This is the "other" Brad in the Northeast. I've read how many of you now have the balance / lab symptoms along with other symptoms like "buzzing in the head", tingling, body jerks, brain fog, etc, etc. I had all of those too. They are all gone and I"m now nearly 100% recovered. For me...it all ended up being Lyme disease with 2 other tick-borne co-infections...Babesia and Bartonella. The Babesia in particular causes the imbalance. You can search previous pages for my long list of lyme symptoms. Just know this: The tests are terrible. If you tested negative it dosn't mean you don't have lyme. I tested negative originally too. You need to find an ILADS trained LLMD. (Lyme Literate MD). More to follow soon. Checkout www.lymenet.org (flash discussions) and teh documentary called 'Under our skin' |
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Hi there,
If you are suffering from symptoms where by the room spins after even the slightest head movement, try tapping the centre of your nose quickly and repeatedly to relieve spinning before feelings of sickness sets in |
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Hi
This is just a message for Sandie from North East UK who used to post here for many years. Sandie I wondered if you are still suffering from the dizziness etc? If so and, if you haven't already, then I would urge you to consider that you actually have Migraine variant vertigo and not labyrinthitis or vestibular neuritis. I found out after over 3.5 years of suffering that is what I have and I recall how your symptoms were very similar to mine in many ways. The length of time you had been suffering, the relapses and flare ups, the link to your allergies. I too suffer hayfever and always thought it played a part in my dizziness. I have recently discovered that histamine levels are directly linked to migraine. The fact that there is constant migraine activity going on in the brain accounts for the fact that we don't compensate for the dizziness as someone who suffered vestibular loss would. I have learnt lots more from www.mvertigo.org and I have seen a neurologist and a neuro-otologist called Dr Surenthiran in the last few months who have both confirmed my diagnosis. I am currently trying some migraine preventative medication and doing the migraine diet. I am still suffering but hoping that in time I will get things more under control. Would love to hear from you Sandie x |
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Hello everyone i am back with a relapse after recovering in 2011 from my first episode of LABs that lasted almost a full year :O The other day I woke up feeling dizzy not as bad as the first time i encountered Labs in 2010 but defiantly noticeable, and the dizzy/spacey feeling is sticking around :/ I'm turning 21 next week which in the USA means I can legally drink ALC :D My question is if I still feel dizzy by my birthday FEB 1st would it still be okay drink? Does anyone have a personal reference on what a Doctor has said about it? Info would be greatly appreciated :) STAY STRONG FELLOW COMMUNIONS!!!
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Hi Sean,
My birthday is also Feb 1st! My advice to drinking is NO. Maybe drinking is fun for those without labs, but if you're dizzy it's just a recipe for illness. Have a token sip of something at a bar if it makes you feel better, but in general I'd stay away. From medical reports and studies I've read there is a complex relationship between alcohol, sugar, chemicals, and all sorts of things in the brain, so that if you are already dizzy one drink really could push you over the edge. My labs came on 2 years ago after having 2 glasses of wine at a bar, and I am still not totally recovered. I sometimes wonder, what if I had not had that wine? Would I be okay today? Probably not because these things are systemic and signal a general imbalance in the body, so that if not the wine something else would have pushed me over. Here is the U.S. we always associate wrecking our bodies with having a good time. It's NOT a good time if it's going to make you sick. And while the average person is sick for one day with a hangover, for some of us alcohol can make us sick for weeks or month or YEARS. If you are dizzy you have to accept that. The high of being around friends and celebrating with food should be enough, and you can always get something that LOOKS like a cocktail and is not. You can order a "virgin" anything, and no one will ever know (a trick I've tried, it works). Happy Birthday! |
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Sean, I have a couple low key drinks and am fine. I have read of others doing the same. Drink something weenie and find out. Best of luck. How was Yellowstone? B
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My issues continue, ive now been sick with a 24/7 vertigo feeling of movement in my body for almost 4 years, i feel like alot of people in my position that are not strong as myself would have simply given up on life with this feeling it really is that dreadful, i dont want to get an operation that will end this suffering as it is risky and can have side effects, and am hoping it will be subside before then as that will be a last resort, wish i could be more positive, but this condition has really starved my life of happiness when i was in the prime of my life at 19 , i was hit literally overnight woke up and have never been the same. I wish i could offer more hope to existing sufferers, the great news is that of everyone here i seem to be one of the worst affected by this condition so it seems to be possible to achieve something with your life even if you don't enjoy it as much anymore. Unfortunately im a changed person much more serious then i used too be, an illness like th is changes you and i fear if i ever recover i will never be the same happy person i used too be. I constantly remind myself that things could be worse i.e there are people that live fulfilling lives that are blind or deaf or disabled, their examples seem to give me strength to continue.
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S I know how you feel. I too have been dizzy 24/7 for nearly 4 years.
Have you explored the possibility of Migraine vertigo and tried migraine preventative medication? |
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yeh ive thought about that Jemma my otoneurolist explored that possibility with Sibellium unfortunately it never worked :( , i literally went to bed one night in 2009 woke up the room doing violent 360 degree spins and have never been the same, i have a theory that the labs caused a form of Mal De Barquement that will take alot of time to get over, i take Gingko Bilbo everyday i feel like it helps, and i need to swim to help my sanity ( being in a weightless environment sort of eliminates the feeling) also whenever im in a car or train it dissappears.
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S, do you have silver (mercury) fillings? You may want to take a test to see if you are heavy metal toxic. There are several tests you can take - I took a hair test and found that I was severely mercury toxic. After I got my fillings out I improved a lot right away. Since the metals get stored in your brain it takes a while to get it all out, but for me the things that helped most were nutritional balancing and getting my fillings replaced.
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Anna i have no silver fillings, wish there was a logical explanation to this mess im in :( but even the best doctors are unsure only that it will take alot of time
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S, So sad that you have to feel so bad. I really really hope there is a solution in your very near future. This all sucks. B
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There are many reasons for ongoing dizziness that I have seen:
The chief one, migraines associated vertigo, may just be a symptom of some of the following: neck issues (misaligned atlas) vertical heterophobia food allergies reproductive hormone imbalance thyroid disease lyme disease Regular doctors generally do not know how to check for these imbalances and so it is recommended to see a functional medical doctor who treats the person rather than the symptoms. |
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I agree with TIna, but I'd also add heavy metal toxicity and candida infections.
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Thanks B, i hope there is a solution too :(. Tina ill make sure to look up some of those or ask my doctor.
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S - just because one migraine preventative did not work for you doesn't mean you don't have MAV. Many people need to try many migraine meds before finding one that works for them.
Like you say, it could be Mal de debarquement if you feel that it was brought on by a boat trip or plane ride perhaps. Can you link the onset of symptoms to some kind of motion event? Even so, doctors often treat Mdds with the same meds they use for MAV. Where do you live, UK, USA?? If you feel that this began as labyrinthitis then I don't see how that would just turn into Mdds. Much more likely that labyrinthitis was the big bang event that sparked MAV. MAV can also mimic other disorders and can cause spinning vertigo like you experience from bppv. Do you have any history or migraine, visual migraine aura, family members who have ever had migraine, did you have travel sickness as a child? These are all relevant to making a MAV diagnosis. The only options for all these vestibular conditions seems to be VRT, time and migraine preventative medication alongside the migraine diet. Jemma x |
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By the way my dizziness disappears in a moving car too. That is very common amongst MAV sufferers!
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Thanks Jemma im looking into the possibillity of MAV. i feel like ive seen a slight improvement in the time ive suffered with this condition.
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S, I take propranolol for my MAV and it seems to help a bit. Many people take Nortriptyline and get good results too. There are many meds out there. For symptom control I take a small dose of Xanax. You have to do what you have to do. I am so sorry you have been so miserable for so long. This stuff is just horrible and I can't wait for someone to figure it out for good. I wonder sometimes if there is any research going on to find a "cure". I am thinking of you. Let us know how it goes. B I too have always found relief driving.
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B, i have to drive and swim to keep my sanity its the only time i can almost feel normal.
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Just wanted to say I have been suffering from this horrible condition for 4 and half years. Was orginally diagnosed with BPPV. After the spinning vertigo stopped I was left with a constant sense of imbalance. This is present 24 hrs day. I have done lots of walking, exercises at the neuro gym all to no avail. The only thing that has shown up as slightly odd is my thyroid is not happy. However a 6 month trial of meds for this did not improve anything. Am now going down the Candida road. Dont know where this journery will take me, but just want it to stop.Want to be me again and would like my life back.
Have lost my job and my faith that this will one day leave me. |
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Good luck, Val. That's a long time to have this. I did the candida diet and it helped. Lots of little things have helped. For a candida plan I recommend the McCombs candida plan. (You can find it online). That helped the most, plus getting my amalgam fillings out. I think the removal of the fillings helped more than anything. I felt less dizzy and sick, and my energy doubled, the MOMENT I got the first two of nine fillings out. I'm now starting to get my life back, although I'm still queasy and have a bad head half the time. I became allergic to bread, sugar, alcohol, and MSG (most restaurant and packaged food) along the way, so I was forced to change my diet, but now eat really healthy and love it. I have slight thyroid issues too, and the nutritional plan by McCombs helped a lot with that. Taking kelp supplements helps too with thyroid (some say works better than meds). Keep us updated.
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Bravo, Tina. You are spot on.
Hi folks...again I encourage everyone to get an IGENEX Western Blot for Lyme Disease. Don't get the regular tests...they are crap and are innacurate. The tests are so bad that the state of Virginia just past a law which mandates that doctors must inform patients the tests aren't accurate when getting results. Candida, Heavy Metal Toxicity, Parasites, and everything else discussed here go hand in hand with lyme. Lyme is usually at the root of it. I was sick for 5 months with all tests 'normal" yet I had awful dizziness / rocking / floating feelings (not vertigo). Tinnitus started and I had ear fullness. I also had a host of other symptoms from muscle twitching to awful anxiety to memory / vision issues. Finally found a doc who knew what I had and tested positive for Lyme and several co-infections from IGENEX (www.igenex.com) Been in treatment for the past 3 years, but honestly have been 90+% recovered for the past 2 years. The diziness is gone and I have my life back. The anxiety, vision issues, and most other symptoms are gone. I'm only left with some mild tinnitus, night sweats, eye floaters, and muscle twitching. To get this far I had to target the lyme with antibiotics and herbs, get rid of my fillings, detox / chelate my heavy metals (I was loaded..very common with lyme), treat parasites (you would be amazed what was living inside me...even when all tests were negative), address yeast / candida, target viruses like EBV, HH6, and go after other infections like Bartonella, Mycoplasma and Chlamydia Pneumonia. My LLMD (Lyme Literate MD) says the only way to get well is to treat the entire body and go after all of these areas...bacteria, viruses, candida, heavy metals, and parasites. The lyme causes all of them to get out of control. Most of my dizziness was actually due to the Babesia (blood born parasite similar to malaria. It is tick borne like lyme.) I have no recollection of when I got bit by the tick..never had a rash. But luckily I found a doc who knew what this was when 9 other doctors told me it was MAV, Labyryinthtis, stress, or "in my head." Check out flash.lymenet.org and watch the 2009 oscar nominated documentary called "Under Our Skin" (free on Netflix / Hulu.) Be well |
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Hi Brad
Any ideas where I would find a LLMD in the uk. Have had the useless NHS test which came back negative but I know its hardly worth the paper its written on. Have looked at various sites but have not found anyone. Thanks |
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Hello, I was diagnosed with labrynthitis in January after a hearing test, MRI & balance test. They said "classic labs". My symptoms started with a bang on Dec. 2, 2012.
My symptoms were imbalance, not walking straight even for a couple stsps, everything around me was at a 3-4 degree tilt for a few weeks. Stuffy ear, tinnitis, eye strain & headaches. Those have mostly disappeared. But I still have some imbalance (taking corners or turning my head quickly), eye strain (I have new wrinkles on my forehead between my eyes). I also get headaches almost immediately from florescent lights. And I can't relax my forehead unless I focus on it. But minutes later its stressed again - like I'm staining to focus. My question is - how normal does this sound @ 3 months from the start of symptoms? I was told VRT could help, but that I'd get over it on my own it just might take a little longer. My fear is I don't know what "normal" is anymore and that I'll be stuck where I'm at now. Not that its horrible... I feel for those of you dealing with this for many months and years!! Its debilitating! Is there anyone here who DID get better - 100% better? I'd love to hear what you went thru. And if you had any advice for speeding things along. All the best to each of you! I greatly appreciate the information I've read here. Amy |
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Anyone who is suffering chronic dizziness issues even if it was originally diagnosed as labyrinthitis then please consider you may have Migraine vertigo or Vestibular Migraine. Val you sound like you might, have you tried a migraine preventative medication? Migraine is not just headache it can cause a host of neurological symptoms including chronic dizziness and some people never have a headache. I spent 3 and a half years believing I had uncompensated labyrinthitis only to find out it was Migraine vertigo and I could have been helped a lot sooner with migraine medication. Read the info at mvertigo.org
This condition is only just being properly given the attention it needs by the medical community. Labyrinthitis on its own does NOT cause years of chronic dizziness! |
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ive read the mvertigo.org, im very interested if my chronic vertigo 24hours a day rocking has been Migraines all along even though i do not get headaches? i have all the symptoms fuzzy vision etc described on the page
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Jemma what are some other MAV meds i could try? if it is MAV
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Val:
I believe Breakspear medical in the UK is the premier hospital for treating lyme. They are one of the only "Lyme Literate" practice in the UK. www.breakspearmedical.com |
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Hi Jemma
Yes I have considered MAV. I already take amitriptyline (to help me sleep), have done so for a number of years and it has not helped the imbalance. Tried Nortriptyline and Pitzofen neither of which helped. Spent many weeks at the neuro gym last year and did not make any progress. Am pinning my hopes on my thyroid causing it, either that or Lymes but trying to get help re Lyme in this country is non existent. It will be 5 long years this year and its been a battle just to keep sane. Have read this thread for a long time (in the days of Gloria etc) and its really helped me to know I am not alone. |
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S - There are so many meds to try, I will list some for you:
amitrityline nortriptyline pizotifen gabapentin lyrica topamax propranolol/metoprolol zonisamide sodium valproate flunarizine I am not sure where you live but if you a neurologist who specialises in migraine they should be able to prescribe a list of options for you. They all seem to have their own choices/orders of preference. Good luck!! Val - Some people have to try loads of meds before they get success. I know that Gloria was diagnosed with MAV and last autumn was still having symptoms but she was very med sensitive so I don't think was able to tolerate getting to a high enough dose to see improvement. I think she stopped posting here because she wanted to move on and so I have to respect that choice. With regard to Lyme disease, that is a very pertinent issue on the mvertigo forum right now with 2 posters having recently been diagnosed with Lyme. Here is a link to someone who has just reported feeling better since starting antibiotic treatment for Lyme. She also offers info on how to get tested here in the UK. I am sure she would respond to any personal messages you sent her for advice. The Lyme literate doctor she saw is Dr David Owen in Cardiff: http://www.mvertigo.org/forum/viewtopic.php?f=1&t=6548 Hope this helps x |
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Hi Jemma
Thank you so much for the link. Have looked it up and Lyme is certainly causing a bit of a stir! Am going to contact the lady for more info. If I do not start to respond to thyroid meds then I will go down the Lyme route. Thank you again |
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Glad to help Val.
I emailed Igenex the US testing lab myself to see if they could give me some info on how to get Lyme tests and they replied with a price list and advice. You have to get the blood test done via your GP and they send it off to Igenex who will then test it and return the results to your doctor. This was their response: ______________________________________ Yes, we can test samples sent to us internationally. We can send out a collection kit to you if we are provided a name and mailing address. Each kit includes a test requisition form, instructions, vials and packaging. Once it is received, a referring doctor is required to sign off on the requisition form and check off which test to be processed. Then a sample is drawn and sent to our lab with the signed form and payment. Once we receive a sample here, it takes about 2-3 weeks to process. When the results are completed, they are mailed only to the ordering physician for interpretation. We are unable to email test results or send results directly to patients. I have attached our price list document that has all our available tests. _________________________________ You can email them yourself at customerservice@igenex.com Last night another dizzy sufferer of 5 years has posted on the mvertigo forum that she has just tested positive for Lyme disease! Jemma x |
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Hey all, I just wanted to come back and give you all an update . I got hit with this virus dec 2011. Honestly, it took about a whole year until I felt normal again. Even though I had good times and really bad times in that year... Overall it did get better. I still have some residual feelings that come on every now and then but the situation is like 99% better. I really have no personal reason to come back and write. I used to live and breathe this board. Hold on to any glimmer of hope anyone would give me that there was a light at the end of the tunnel. It really helped me to keep going. My doctor was very frank with me from the beginning. That it could take 3 weeks 3 months or years to recover . But either way it would go. He had it himself . This board really helped me. I just realized I hadn't been on here in more than 8 months because life was back to normal. That's why I've come back to let u know that no matter how bad it feels. No matter how hard it is ... It will get better. I know the feeling of waking up every day wishing and praying u would see right and be back to normal but ur still dizzy and u feel like your living this alternate reality and you just want to step back into your old life. I promise you all those symptoms have resolved. And they will for you too. Keep pushing. Keep trying new things..follow up with your docs. Keep walking outdoors ( that helps) and just keep the faith. Alot of us have made it through ... And you will too . I am praying for all of you.. And I know anxiety is a huge part of this. But try to keep calm in this storm for it too shall pass.
Much love Malia |
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Hi everyone,
Someone mentioned this forum on another website, and after having read these posts I think it's really wonderful that there is a place where people having 'labs' can support each other and share tips and symptoms. On saturday night I was struck with vertigo. I had been on my computer and all of a sudden I felt as though the room wasn't still and was turning. By the time my partner walked me to the bedroom and put me on the bed the ceiling was turning all the way down to the left of me and then back up again. It calmed down a little while I was lying down on the bed, but I was still really disorientated. I was really panicking and started to feel sick, which I thought was due to anxiety but I have since read it's a normal symptom. My partner wanted to take me to A&E but I was too scared to go as I'm really scared of hospitals. It eventually calmed down after 3 hours. By this point it was about 11pm and I was really hungry but could barely eat anything. The next day when I woke up, I was feeling almost like normal, but with a constant sense of unsteadiness and lack of focus. My partner said I looked absolutely exhausted even though I hadn't had trouble sleeping. And it's true ever since this has happened I've just been so exhausted. I went back to bed a few hours later, and I had a very faint ringing in my ears which lasted about 15 minutes. I now have this ringing again but it's so faint I think I can only notice it because the room is silent. I mustered up the courage to go to the hospital the next day. The doctor said I have labs, and that it would take 4-6 weeks to go (which from this forum I now know is definitely not the case!!!). He said there's nothing I can do and I just have to wait for it to heal itself. He prescribed me Prochlorperazine for when I feel sick, which I haven't needed to take yet. Today I feel almost normal, but I have this sensation as though the back of my head is swollen, and occasionally my face feels swollen too. I regularly feel really thirsty and have been drinking a lot more. I took the day off work because I work with counselling clients, and I was really scared I'd suddenly have an attack in front of them. Even though I feel 90%, I'm scared to go outside because my partner is at work and if something were to happen I'd be on my own. I'm really sorry the long message! If any of you take the time to read this, thank you very much. Even though this has only just started for me I can really empathise with how alienating this can be for some of you, as even though outwardly you look fine, on the inside you don't feel well at all. Best wishes to all of you, I really admire your strength. Aurelie |
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Aurelie .. I just want to say that most people who have this will heal up in the 3-8 week period. Most people I personally know who did have it, healed up in that time frame. So stay optimistic and u might be able to recover faster. The reason most people are actually on here is because the are the few who took a little longer to recover . Again the majority of people probably don't even get on a site to chat about it because they heal up fast. Give it some time and see where it goes ... Usually if it does come back it will never be as bad as the first attack. Just take it easy rest. Some of the things that helped me in the beginning 1) wearing sunglasses when it's too bright even indoors 2) don't do tough physical activity. Although walking outdoors is always really helpful 3) most important.. Stay calm. This will pass. It has for me :) the anxiety is unreal with this. 4) getting a full 8 hours of sleep
I have an aunt who gets these little episodes of vertigo that last for a day... but it's not labs its migraine associated with vertigo.. And I think there is medication u can take for that. So maybe you want to ask your doctor about that. Either way. If you have any questions or just want to talk let me know and I'll be more than willing to help out :) wishing you a speedy recovery Malia |
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Just wanted to say like Malia, I also had labyrinthitis (later diagnosed as MAV) but have now recovered! It was absolute hell, I was hit by severe spinning in July 2011 and I felt permanently dizzy or rather drunk 24/7 for well over a year. I had several trips to A&E during that year when the dizziness and headaches were extreme. I had various tests by ENT doctor and was told I had labs (or vestibular neuritis to be precise).
I couldn't look after my young children, I had to use crutches following falls, I couldn't really cope going anywhere with busy visual environments such as supermarkets, pharmacies or bookshops (the lines of books sent me into a total spin!) I remember crying in the bath thinking what has happened to me. It didn't help that I had just moved country and didn't know anyone. Everything looked surreal like I was behind a strange glass window. I didnt feel anyone understood how awful I felt, I thought my brain had packed up. I had terrible pins and needles and stabbing pains. I eventually saw a neurotologist (combined ent/neurologist) and was diagnosed with MAV. I tried amitriptylne on a low dose for headaches which helped both pain and dizziness but I had to come off due to side effects. I did VRT religiously supervised by a physio (I do not recommend doing the ones on the Internet as you could over do it and cause too much stress on the brain, I had been doing an hour a day of the Internet ones and they told me I should start at 2 mins a day). Eventually slowly slowly with lots of set backs I started to improve. Now 22 months down the line I can say I am almost at 100 per cent, I have 'moments' like Malia especially when looking at patterns or certain lights but no where near as bad as what it was. I am normal again, thank God! I used to go into this shop for kids with brightly coloured baubles and trinkets everywhere, rows of toys and fluorescent lighting. A labs nightmare! I literally would have to walk out within 2 seconds as I felt so dizzy and ill looking at all of that. Each couple of months I would go back and see how long I could stay in the shop. Today after all this time, I went back and it did not affect me at all. I bought a heart shaped stone from there which will always be a reminder of my recovery. I found this website so helpful, it was the only thing that stopped me going insane so thank you to Richard for setting this up, so many people benefit from it. You will all get better at different rates but you will get there. I feel completely changed by the experience, you will be stronger for it and appreciate every moment of life more. Keep going, it won't be like this forever! Just sleep/eat well, minimize other stresses, get support, do VRT and you will slowly improve. Wishing you all lots of luck! Alice x |
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Have lab for 6 months Can not drive can not work See double if turn my head Malls public places puts me right off balance Have more bad days than good
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Sheldon. I had the same thing with the double peripheral vision and supermarkets malls and any big space would send me spinning. Eventually your good days will be more than your bad days and then eventually you won't even remember this awful episode of your life. I am recovered (took about a year) as are many others and even though we might have slight residue, it gets a million times better with time. We just have to have patience and have faith that it will get better. I met so many people who have had labs and they have all recovered. I am praying for your speedy recovery. If you have any questions please let me know and I'll try to help out as much as I can
Take care Malia |
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Can't believe I haven't seen this page before. When I was 20 I woke up with severe pain in my right ear. I was completely deaf-both sides! I had a bit of a cold so assumed it was due to this. Wasn't sick at this point but was taking antibiotics and anti sickness tablets. So to the doctor and he said both my ear drums had burst due to fluid behind the ear drum probably due to the cold. 3 days later I start to get sound back in right ear. I start to feel dizzy and balance starts to become an issue as well as Nausea but wasn't actually sick. Eventually my hearing starts to come back but only 60% left and 20-30% right. So I get referred to ENT. They find out at this point that the middle ear bones are missing in right ear and I should have been deaf since child hood if not since birth. Whether that contributed or not we don't know.
I then lost my job as I'd been off for 6 months. I was starting to think this is my life! Didn't even get incapacity benefits from DWP as THEIR doctor says nothing wrong, but my GP and ENT speciallists say otherwise. Anyway, I saw an add for a hearing aid type thingy in one of those "old people's" mags and decided to give it a bash. Went to local private hearing clinic and they said it wasn't really suitable for me and why had the hospital not offered a hearing aid or pair even........ Good bloody question! Back to ENT and the Pratt said that I was young and probably vain and wouldn't wear it! FFS! So I get one hearing aid for worst ear to see how I go and not long after I start to feel better. I doubt the aid actually sorted the prob, more like someone trying to help got me out of severe depression. A couple of months later I got a job and have had little dizzy patches here an there but nothing really. And now, 11 years later its back but worse. Started Thursday I bent down to collect mail and felt something move in ear. Nothing major after it tho. Friday I get my hearing aid clinic to check my ears ( easier to get appt with them than doc p.s. haven't always had hearing aid)fluid behind ear drum and a lot of pressure, didnt seem back enough for doc. Sunday morning 4am I wake up violently sick, barely make it to bathroom, for the next couple of hours I'm vomiting. I finally decide enough is enough, and call emergency out of hours doc as I'm still being sick tho there isnt anything left to expel, my back is killing me, exhausted, sweating and shaking violently, then shivering violently and the world is spinning like your severely drunk without the drink! Doc arrives and I get an injection-anti imetic. Half hour or less and I stop being sick and fall asleep. Thank god! Next day Im not being sick as doc left tablets too but still feeling wrong, luckily my doc offers house call as getting to the bathroom was mission nearly impossible never mind out the door! I realise that this might be Lab again and tell him background from years ago (had diff doc then) and the past couple days. He looked in ear and infection but not burst. Antibiotics and anti dizziness tablets given and most symptoms disappear in a day or two. And that's us up to today. Dizziness that has me pin balling up hallway, can't go out on own as I look like I'm drunk, no driving, off work and worrying that I'll loose another job even tho its only been a week as major improvement then stalled at this stage. Also have a birthday driving experience on track next week - that's not going to happen :( Wow, haven't ranted on like that about Lab before as anyone who hasn't had it really doesn't understand. I'm hoping that this is a short stint of Lab but considering how serious it felt this time round I'm not hopeful. I've read lots about do's and don'ts and some works some dont. Regulating breathing to avoid being sick - usually works for me. lying down to stop room spinning - kinda works but inhibits your system from fixing itself, catch 22 or what! Trying to keep busy to avoid over thinking and depression - not easy but I'm sure it's a good idea. Gonna try a trip in car (not driving) to see if going to work is possible as I love my job and don't want to start over AGAIN! |
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Hi everyone,
I've only had labs for a month but am already feeling much better thanks to you. I have read all your comments and they had helped immensely. It all started when I was standing in the bathroom putting on my makeup. The room started spinning and I got very ill throwing up. Luckily I was right by the toilet. I managed to make it to bed and stayed there all day. I was all by myself. The next day a friend took make to the doctor who told me I had labs and it would take 6 to 8 weeks to recover. I would say that I'm probably 75% better than I was. The worst thing for me was the vomiting. The comments I read about your brain compensating to adjust to your condition made sense. I stopped taking the meds I had been given and I got better. On the meds I was not improving. I was taking Meclizine for motion sickness and Valium. The first few days were rough with vertigo and vomiting but I got better. I did this 2 weeks ago and I have been improving everyday. I truly believe that my brain adjusted. I forced myself to start doing normal things. I walked up and down the sidewalk. I cleaned my house. I did everything I could do as long as i stayed close to home. I exercised my brain and retrained it. I am not advising anyone to stop their meds. I just wanted to let you know that I think it helped me to recover. I am so sorry that many people here have had labs for so long. You are all very strong people to have to deal with this everyday. But you do it. This condition is the worst thing that ever happened to me. I could not function and my anxiety only made it worse. I'm sure there is light at the end of the tunnel for you. It will only take longer. I am slowly starting to resume my life. I just wanted to let newly diagnosed people that it will probably get better. Good Luck to everyone. Your comments have really helped. |
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Hi Everyone
I have had Labs for at least 14 years or at least that was what was originally diagnosed & they just keep giving me the medication. I have had 4 or 5 bouts in that time in the extreme where I couldn't get out of bed & was being violently sick, sometimes so bad the Doctor had to come to give me an injection to stop it. I get numerous small bouts of it , very regularly. I can go weeks just feeling yukky, but just get on with things as there is not much else you can do. I awoke this morning feeling quite bad, but managed to make myself get up and start to function, I can't walk very straight though & don't like moving my head, but I know I have to. My head feels like a sponge ball that is full of water... does that make sense to anyone? It also feels under pressure, in fact sometimes I find taking a couple of paracetamol helps. Today I can't function or concentrate very well, but when I can I will read more of your posts & hopefully find something I can try to help improve my situation. Thanks all. |
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Just thought I'd ask , does anyone else have the problem of only being able to lay on one side? If I lay on my left side this is what sometimes seems to bring on an attack. I have not really laid on my left side since the end of March this year without getting a bout of Lab, I am so fed up with it. As I can tell you all are as well.
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For Bev Haedicke, You may have migraine associated vertigo. In this case the migraine is located in the balance center of the brain, rather than in a part that registers pain. This can go on for days, weeks, months or years. You don't need a headache to be diagnosed with this. This may be a genetic component or it may be brought on by food sensitivities, spinal misalignment, vision issues, hormonal imbalance, thyroid, or some inflammatory condition from an ongoing low grade infection. Treatment is migraine preventative diet as well as moderate exercise, going to bed and waking up at the same time. Once other conditions have been ruled out, some docs will prescribe preventative migraine meds.
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Thank you Tina, that is very Interesting, in all the years I have had this , I never thought to question the diagnosis. My spine is not a good shape & I do get neck pain with this. I have bought a Tempur Neck Pillow to try to help with this, but TBH I'm not sure it helps. I am truly fed up with feeling like this. I will ask my GP when I next see him , if it is possible that I have what you have suggested.
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So happy to have found this site, I have had labs now for five days and today I managed to walk to the bathroom with help and clean my own teeth. Any one reading this hang on in there you have to experience it to understand the stress but time will help. I feel for any one reading this. In a while I,m going to try and have a shave ( sat down) I still feel awful but the room has stopped spinning. Good luck reader.
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I have been living with labs for 10 days now and glad I stumbled upon this site as I feel so alone in this! My world is no longer spinning nonstop, but is still very distorted. David, I was finally able to shower (unsteadily, but carefully), at about the Day 8 mark. My doc prescribed Xanax a few days ago, which I think has helped immensely with stress, and I started VRT this week. I am hoping to try to go back to work on Monday for at least half days starting out, but I am a Financial Analyst and I stare at a computer all day so I'm a little worried. I'm curious, when were others able to return to work? This sh*t SUCKS, but I'm trying my best to hang in there and keep a positive attitude.
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Just wanted to give people who have just come down with Labs some encouragement. After 5 weeks with Labs I have fully recovered. The first week was the worst. I think part of the problem was that I didn't feel like eating anything because of the nausea. I found that I could manage to drink a nutritional drink like Boost or Ensure. This got some vitamins in me and I started feeling better. I just wanted you to know that in most cases there is light at the end of the tunnel. I didn't need VRT. My brain compensated on it's own. When you are able try to do as many normal everyday things as you can. It really helped me.
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Just checking in! My bout with labs started over 4 years ago. Now I can say my balance is about 95% better! I do still have neck problems from the struggle, but I'll take that :) I also still have issues with BPPV when I get sick, but I can do the epley at home and take care of it.
If you're dealing with spinning vertigo particularly when you lay down or move your head to the side, make sure you get checked out for BPPV. It can make labs worse. Sadly though many of us want an answer and a cure, often with the vestibular system it's simply a matter of time. |
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Oh, I forgot! It's been awhile since anyone has thanked Richard Baker for making this therapeutic community available. Thanks Richard!
[You’re very welcome — Rich] |
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Hello all! I can't believe it took me so long to find this site, but I'm glad I did! I haven't had time to read more than one page of posts so far, but it feels good to know that I'm not alone. I came down with labs last Dec. and it's been incredibly debilitating and isolating...oh yeah, and maddening! My accute period back in mid-December was very accute. The spins got so violent, that I couldn't walk unassisted and could not stop vomiting, so I got dehydrated, not urinating all night, couldn't keep water or Gatorade down, no matter how slowly I sipped. Early that morning, sleepless, I felt like it was time for the Grim Reaper to visit me. I wondered if I was having a stroke. Worried that my kidneys would fail on me, I woke my husband and made him take me to the hospital for an I.V. I hung onto him with one hand and had my trashcan in the other and once I was at the hospital, I had to keep my eyes tightly shut. Even after the accute period and continuous Ativan sedation for 3 days, and bedrest for about a week, I had no idea just how much panic attack and symptoms of it awaited me. And all that anxiety delayed my recovery. A big contributor to that anxiety is after all the doctor and specialist visits, there is no cure, no real treatment, no definitive diagnosis, more confusion than answers - just 'wait it out'. Ugh! On top of all that is that people out there just don't understand the extent of our suffering, and especially the anxiety. Even my doctors didn't seem to have much sympathy for my panic disorder. Other people out there will try to give misinformation on my condition, and I wish I hadn't listened to them, but they were pushy and overbearing, and all that testing and running around trying to figure this all out sent me into a full-on nervous breakdown. Did I mention that it all caused me to become anorexic and agoraphobic? I finally acquired Valium to take a few times a day and it helped a lot. Problem is that for me, tolerance develops fast on it. After about 5 weeks on it, I've since been on a slow taper on it. My doctor won't give refills on it, so I have to go in monthly for it. I'd be lying if I said I'm not nervous with each step down from the med. But on the last visit, I finally got the okay to drive again, which I have been incredibly frightened of. So it's been over a week of doing some driving here and there (sometimes, even after dark and/or on the freeway). I haven't had a vertigo attack behind the wheel, but it had been nearly 8 months since I had last driven, and I always had driving anxiety in the first place. I should feel good about getting most of my life back, but instead, some of my panic attacks have returned this past week, when I'm at home at night just walking around at home trying to relax. So I'm not even feeling my medicine sometimes. Hopefully, once I get used to driving (should be soon), I'll have fewer panic attacks. I also have BPPV. I've failed at the Epleys, and the spins during the maneuvers made the anxiety worse, so I'll wait until I'm either further along with my drug taper or off of the drug until I go back and tackle the BPPV. In the meantime, for my sanity's sake, I just sweep it under the rug and pretend it doesn't exist by sleeping only on my left side or on my back and on 2 pillows (I favor my right side, but that's the affected ear). I still have nystagmus (googly eyes) for about the first 30 min or so upon waking up and sometimes while reading. Thanks for this forum, because I tried to contact VEDA for a support group in my area, and came up empty. It's so lonely.
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Amanda, It's great that you have recovered 95% after 4 years. My bout with labs only lasted 5 weeks, I can't imagine dealing with it for 4 years. I'm still a little paranoid that when I wake up in the morning that the room will be spinning. But so far so good. It's been a week symptom free. I want to thank Richard too. This community really helped me with this scary condition. I don't know what I would have done without it. My friends and family still really don't understand what I was going through.
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So glad I found this site. Mine started a week and a half ago when I rolled over in bed and the whole room started spinning violently. I was instantly nauseous but did not vomit but the whole world felt off kilter and skewed. Then later in the day I felt better but felt like I was seeing through a fog. It didn't really improve so I called my doctor and got an appointment for this Wed. but yesterday it was much worse and everything was spinning again. Luckily I work in an OR and one of our ENT doctors was working and he looked at me and said I have viral labrynthitis. He prescribed Valtrex and said I should see an improvement in 3 days,I have taken 2 days worth and already feel better. The visual fog is gone, along with the ringing in my right ear and the pain in my left. I still have some dizziness but its much less pronounced. I don't know if this will help anyone else but its worth a try because this whole exp-erience has given me a new apprieciation of how debilitating vertigo and balance disorders are.
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Thank god I found this place. Just knowing that I'm not alone has made me feel a little better.
My name is Nick and I (probably) have labyrinthitis. I got my diagnosis about four hours ago, after four attacks of room-spinning vertigo and nausia over the last six months or so. And this weird, constant feeling of lightheadedness that I've had in between them. Reading your stories its reassuring to know that my symptoms aren't me going crazy. It was hard getting the GP to understand my symptoms. 'woozy and lightheaded all the time'. Thank god I work for an ex-nurse who understands exactly whats going on with me - although whether that helps if I need to take months off work remains to be seen. Curse this disease! Where does it come from?? One day you're fine and the next you're as good as paralysed, when you're not busy throwing up. This illness is some sort of sick joke. Damn it. I am not taking this well. |
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I have had vertigo for 8 years off and on. After a six month reprieve it has started again. I have not been truly diagnosed, but have seen a gaggle of doctors. MRIs ruled out brain tumors and MS and they are fairly confident it is not BPPV and think it may be migraine related...but my symptoms seem very labrynthitisy...numbness of the face anyone? After an episode I feel like I have sinus infections or tooth pain and often end up at the doc or dentist for treatment, only to be told "you don't"...I'm tired of going to doctors and paying their bills only to be looked at like I am a crazy woman....which I admit to being...I always feel like I have sinus or ear drainage running down my throat...do you?
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Sublingual vitamin b12 liquid drops. Cured everything. look into b12 defeciency. worked for me within a month.
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Hi All, I am an English guy in Australia
Like many other people who find this page, I got a massive sense of relief reading it - I am not losing my mind! About 3 months ago I was at work and my vision went, my balance went and I got scared. I went to the doctors who said stress/alcohol/sleep deprivation was the cause (I had just got a new puppy, work was hell and I had been drinking heavily. Oh, and my apartment is mouldy and damp) I stopped all the bad stuff and started living really well (no alcohol, good food etc). Things improved a bit but I still got major bouts of dizziness, and I started spotting more and more symptoms. I had my eyes checked, hearing checked and an MRI - this is important to do. It helped remove any more serious conditions The ENT specialist mentioned Benign paroxysmal positional vertigo (BPPV). This doesn't feel right to me as I have many more symptoms than just dizziness (see below) I feel better now - I wouldn't have been able to type this on my bad days I found it helpful to put a number on the bad days - Using 1 to 10 with 10 being perfect. It meant I could tell my partner what I felt like and she could understand. I had many days that were 2 or 3. I don't have any of them at the moment (I can still be a 6 or 7 though). My worst times were at shopping centres. My eye test was in one and I nearly asked them to call me an ambulance I feel so bad. Work was also bad. Looking at computers, turning to talk to people, being inside then going outside Here are the symptoms that I had combined with ones I can find on this page. I thought it might help if someone out there is trying to find information about Lab.
I hope this helps someone get some piece of mind and to all the other people who have added comments...THANK YOU ALL! |
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Hi everyone. I have had Labs for a year now. It took 9 months to get a proper diagnosis, so I started up VRT in June. I have been doing VRT for 3 months now and have seen an improvement...I still feel off though, like my heads in a fish bowl and my vision is off, eyes are tired and brain fog!!! I am hoping there in a end in sight. a year of hell that I don't wish on anyone. If anyone has any tips, I am afraid I'll be like this forever.
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Have been living with this dreaded illness for 12 months and have only just got somewhat diagnosed. Symptoms at first were diagnosed as thyroid problem and had thyroidectomy in Dec 2012. However symptoms persisted and finally saw an ENT last week who said there is some inner ear damage and am starting VRT tomorrow!! Really hope it helps. Current symptoms- feeling drunk, off balance, headache, ear pressure, tinnitus, flushed face, feel uncoordinated,very cold, prickly feeling in body, heavy chest, sore blurry eyes,, extreme exhaustion. Think that's it??!! Anyone else have such wide symptoms ?? A little scared about the future here.
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Hi Sarah/Lynda,
I am still in the middle of this and about to go to a neurologist to hopefully confirm my diagnosis. I am really hoping I have Labs because the other thoughts swimming around in my head are worse. It's been 4 months for me and my symptoms include things both of you have said. I believe that part of the problem is that the symptoms compound on top of each other. For example, I get to the end of the day. I am tired, grumpy, just want to lay down. Then I notice my eyes not focusing. This makes me anxious. I then notice everything else (twinges in my legs for example) and I don't know if this is a symptom or just because I am relaxing for the first time all day. It's relentless at times, and then at others I feel great. It feels like an upward slope but with days sliding back Wish you both the best! |
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Lynda- I have had all those feeling you describe. I hope the VRT is going good for you. I am almost 4 months into VRT. I am noticing I am having better moments, even moments where I feel normal for a while! But I still struggle day to day. I feel off, not drunk anymore though. I have talked with a lot of people who are 2 or 3 years out and most of them are saying they are 95% better...I agree Patrick- it's like 3 steps forward, 2 steps back...this thing can hang on and on!
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Hi Patrick,
I came on here in April with exactly the same symptoms but it was suggested that I was coming on the forum a little too soon and that it should clear up soon, so I left for a while. I think that's really great your partner is so understanding about it and that you can rate it to help give her an idea of how it is for you on a day to day basis, I hadn't thought of that and people have found it hard to help because they think I look completely fine. My symptoms are very similar to yours. My face also felt numb and as though someone had put a really tight clamp around my head, giving me a huge headache. I found it really hard to go outside, I couldn't walk for more than 15 minutes before nearly fainting, and being in busy places with lots of people walking past really aggravated the vertigo. I think your symptoms of tingling may be due to the anxiety, as I've had anxiety myself and that was quite common. The doctors initially told me it was Labyrinthitis but ENT have since said it's BPPV. I asked them what could have caused it and they said hitting my head, an ear infection etc. But none of this happened to me (at least I don't think so). What did the doctor prescribe you? They gave me Cinnarizine which for the most part has got rid of the symptoms. The only downside is that I have to take 6 tablets and it made me so exhausted. When I first started taking it, I noticed I could take it for a couple of weeks and then come off for a couple of weeks. But over time this happened less and I could barely manage 3 days without it. I figured it was because my body was becoming dependant on it for equilibrium, so I weaned myself off it so that I'm now on 3 tablets a day, which still works for me. If it hasn't already been suggested to you, maybe you could ask about this medicine to your doctor? It's been really tough, I think we're so used to having medicine to fix things that we feel really lost and vulnerable when there doesn't seem to be a cure for something and the diagnosis isn't 100%. Due to all of this after 7 months I haven't been able to go out a lot and I failed my Masters interview which was pretty easy to pass. The Cinnarizine caused me to gain some weight too, but I don't mind that if it gets rid of the symptoms for now while I try to get rid of this for good. ENT tried the Epley Maneuver, which did nothing, and they got me to do the Brandt-Harroff exercises, which also did nothing. I had my MRI last week and I'm waiting for the results, but the doctor said it probably won't show anything (*relatively* good news!) I'm now considering seeing an Osteopath, or trying Homeopathy. There may be some alternative way to help the symptoms and help the body correct itself. I wish all of you the best, and best of luck with the VRT Lynda and Sarah. |
Please could people in the UK follow this link and sign this petition to increase GP awareness of balance disorders, ideally we need 100,000 signatures... Thanks!!
https://submissions.epetitions.direct.gov.uk/petitions/35045