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    Old 02-29-2004, 09:09 AM   #1
    jonp
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    constant dizziness problems along with vision/fatigue/confusion/balance problems

    I basically need some advice and reassurance from you guys please!

    I am a 21 year old male from England, UK. In October 2003 i was diagnosed with an ear infection in my left ear, i got some medication and it cleared up after about ten days. But I started getting severe symptoms in November 2003. It started with a feeling of being severely light-headed and off balance at work ( i work on my computer/VDU) . It scared me at first, but i thought oh it will go away, but it didnt. By dinner time i felt awful. I rushed home and just got on my bed and stayed there until i felt slightly better.

    Over that weekend i felt drained, very weird, light-headed and slightly sick at times. I managed to play football on the sunday and i felt ok, but in the evening i suffered badly and my condition worsened. For the following 3 weeks i felt 'spaced' out if you like. I suffered from constant dizziness and light-headedness. The doctors said i was suffering from vertigo due to a virus in the ear, and it would clear up in 10 days to 2 weeks or so. I was given betahistine dihydrochloride and stemetil (prochlorperazine maleate) for the dizziness - a months supply ( they didnt work at all for me). The strange thing is I didnt once feel as though the world was spinning around me.

    Eventually, after 3 weeks, i began to feel better and went back to work, as i thought the feelings had died off a little. I was very wrong....... The following week i was in bed constantly, just sleeping mostly. During the worst times i was confused, extremely fatigued, tired, my muscles ached so bad i couldn't walk at times, i had burning eyes, loss of appetite, strange uncontrollable eye movements, severe headaches, tingling sensations in my head, stiff neck, difficulty concentrating and choosing words, and bright light annoyed me. I was just knocked for six, the symptoms were back and were worst, i didn't even know who i was at times. I felt very very weird.

    I was sent to an ear, nose and throat specialist. After talking to him, he said to me 'march on the spot with your eyes closed'. So i did...... a little off-balanced, but i managed it comfortably. He said, you dont suffer from vertigo, you have had a virus, it sounds like viral meningitis. He sent me to see a neurologist a few days later. He said i was suffering from a virus (but not viral meningitis) which would take time to go. He sent me for blood test and a MRI brain scan just in case. At my friends house before christmas I vomited from the symptoms (before Christmas), as i felt very very light-headed and nauseated (not spinning around though).

    In the New year all the tests came back clear, and after christmas the neurologist rang me saying i should get back to normal activities, and start building my strength up.

    From around 10th January to around 17th Feb. 2004, i was getting out here and there, driving about, usually at night time as i feel a lot better. I didnt feel comfortable going out during the day, but at night i felt a lot better. I never went out properly though (day or night), only to peoples' houses. When i say 'properly' i mean out where this is a lot of things going on (stimuli - people, noises, fast moving things etc). During the day i felt worst......i felt like my head was not clear, everything i looked at just didnt seem to be 'right', its so hard to explain. I felt like ripping my head off at times! Its so frustrating. When i went out shopping i felt horrid. When i was in a shop i would look at things on a shelf, i felt ok at first, then the symptoms gradually built up, it felt like i couldn't look at one item on the shelf as my eyes moved involuntary all over the place, and i got frustrated, light-headed and scared and i felt like i had to get out of the shop quick. I didnt suffer from complete spinning sensations though, i just felt off balanced and had this constant fog in my head and eyes, and felt constantly light-headed with very small uncontrollable eye movements. At night it seemed to ease off a hell a lot.

    Since the 17th Feb 2004, the symptoms have come on a little stronger again. I am once again housebound and I am now getting more pressure and ringing in my left ear (occasionally). I dont suffer any form of hearing loss ( any that i can notice anyway). I am OK in the house, but I cant go out or drive again (day or night).

    I know there are many many things that can mimic Meniere's syndrome, but im just wondering if any of you know anyone, or if you have experienced a virus that has caused symptoms similar to meniere's syndrome. How long did they last? Did any of you have a virus similar to mine that then led on to the Meniere's syndrome? It does sound like a virus to me, as the symptoms i felt that week when i was tucked up in bed do sound viral, or did any of you guys suffer like this at first. I just need someone who knows what this feeling is like to help me. I am very very fortunate as i have only had one episode of vertigo. (it was very mild and lasted for about half a second, as i looked up away from the computer screen in fact). I was thinking it could be vestibular neurtitis (the viral infection of the ear), but i cant find any evidence of how long this lasts, or any cases of people having it etc.

    PS my close friend has exactly the same symptoms as me, and they started about 2 weeks before mine did. He is going through the same things, seeing specialists etc. Is it likely this is a virus he has given me? If so, is that more reassuring, as viruses do die after a few months (although this is the 4 the month now), or did anyone's Meniere's syndrome begin with a virus??

    Please please help as i am getting quite depressed, i am 21 years old, and i am just house bound 24/7. I used to be active, never tired, never down or depressed. Please help. I have not been told what is going on by the doctors properly yet, im just scared im going to have this for years. I am going back to the specialist this Tuesday ( the 2nd march 2004). If anyone can give me advice of what to tell him, please help.

    regards Jonathan

     
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    Old 02-29-2004, 09:31 AM   #2
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    Re: constant dizziness problems along with vision/fatigue/confusion/balance problems

    Hi Jonathan,

    Has anyone mentioned Labyrinthitis to you? This is a virus of the inner ear, I have had this since the middle of October last year, although it does now seem to be getting better. I felt exactly as you do, I too have never experienced spinning of any sort. Labyrinthitis does take quite a while to go, it is not a run-of-the-mill type of virus and it can and does take the pattern of getting better then worse again, then better. I really dont think you should concern yourself with Menieres, people with this tend to have "attacks" of spinning vertigo and hearing loss which you dont. I'm afraid the only advice I was given was to sit it out and to avoid medication as this can stop things getting better on their own.

    There are other far more experienced people on this board and I'm sure they will offer you more advice but mine is try to relax (hard, I know) and believe it will get better although it may take some time.

    Chin up,

    Lizzy x

    Ps I found staying active a great help although I know this is not always possible.

     
    Old 02-29-2004, 10:14 AM   #3
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    Re: constant dizziness problems along with vision/fatigue/confusion/balance problems

    Hi Jonathan,

    Sorry you're going through this, you're in the eye of the storm, it does get easier.

    I know you want to hear this is a virus, but to be honest it sounds very much like an inner ear disorder, the title of your post pretty much sums up all the things you and many others on this board, myself included, experience with one. ENT's are notoriously bad at diagnosing inner ear disorders. Strange, I know, but ENT's are required to do no further training in the inner ear and often get it wrong. Occasionally they understand dizzy disorders, but only if they've bothered to look in to it. There are super specialists in balance disorders called neurotologist (different from neurologists) who are highly trained in the diagnosis of vestibular disorders. There is a neurotology department in London, in the National Hospital of Neurology and Neurosurgery. To save yourself being passed from pillar to post, talking to specialists who look at you blankly etc.. I would push for a referral there. Ask to be referred to Linda Luxon. They are totally familiar with the disastrous care and diagnosis people often get through ENT's, will be totally familiar with every single symptom you have described and will perform the correct tests. I saw 2 moron ENT's before I ended up there. Neurologists are also not the best people to diagnose an inner ear disorder, which is probably why he told you you have a virus. If you want a description of what a neurotologist is put 'hbep' in name search and 'Which specialist to see' in word search. You need to go in to the advanced search option to do this.

    The fact you felt virally isn't inconsistent with an inner ear disorder, it can often make you feel that way, especially in the early stages. The fact that your friend came down with this simultaneously is also not inconsistent with an inner ear disorder, viral labyrinthitis and vestibular neuritis weirdly can happen in epidemics, someone on this board came down with lab at the same time as a co worker. A lot of people jump to the conclusion they have menieres, they read tinnitus and a full ear feeling and presume those are merely menieres symptoms, many people with vestibular neuritis experience similiar. The text book descriptions of lab or VN is initial bouts of violent vertigo followed by dizziness, this is actually a bogus description, many people have a slow build of the type you describe, with no spinning vertigo. Another condition this could be is something called Migraine associated vertigo, this typically happens in 'attacks' followed by remission, but there are atypical varieties that cause 24/7 symptoms. My guess from your description is that you have vestibular neuritis, and this would be your initial diagnosis, if people have 24/7 symptoms they often only explore migraine if the treatment for VN doesn't work out.

    As I said at the start, although this can go on for a while, the symptoms don't stay at the same level of severity, you won't always feel like someone chucked a soup tureen in your head and that you are permanently stuck in the wrong glasses prescription. I've been where you are now, almost to a T, I'm not fully recovered but life is much, much easier than it was. Lizzy is right, try very hard not to panic. One of the reasons a diagnosis is so critical is that it gets the awful feelings of anxiety about what the heck is happening under control. Obviously also, they can get you started on the right treatment a.s.a.p. Try and get your doc to refer you to neurotology, even if some idiots along the way try to tell you this isn't an inner ear disorder - been there gor the T shirt. The neurotology department will see people with your symptoms all day every day.

    I hope this helps, any other questions just ask,

    best,

    hbep.
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    Last edited by hbep; 02-29-2004 at 10:20 AM.

     
    Old 02-29-2004, 12:38 PM   #4
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    Re: constant dizziness problems along with vision/fatigue/confusion/balance problems

    Hi,

    Just a very quick note just to agree whole heartedly with the above posts, sounds sooooo like viral labs, all that you have had I too have experinced and still do. On hbep recommendation I went to Linda Luxon and she was absolutely fantastic!! had the proper tests which showed inner ear dysfunction (caused by labs), long story short - go there. I too wasted buckets of cash on an ENT and various other so called proffesionals only to be given incorrect diagnosis and prognosis.

    Let us know how you get on and good luck!

    Oh on a positive note, if it is inner ear the out look is great, you should make a full recovery once the old brain compensates fully.

     
    Old 02-29-2004, 01:19 PM   #5
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    Re: constant dizziness problems along with vision/fatigue/confusion/balance problems

    hi there guys. YOu have been soooooo helpful saying that you have the same symptoms as me. AT last some other people who understand! And you have really given me hope saying that i am going to get better. I hope you are right saying its labs, as i thought i had some kind of super virus that i was never gonna shake off!!! I didnt think this could be something to do with my ear because of the fatigue symptoms etc. I just didnt realise your ear could make you fatigued!!! Maybe this is how most doctors think too???!?!?

    On tues i will put this forward to my specialist, and if he just politely ignores what i say then i will argue it further by saying i have been on the internet and tell him what you guys have said, about being messed about and diagnosed incorrectly. If he still says its just a virus i will try to get an appointment with Linda Luxon like a few of you said. Is she just by referral only? Will it be difficult to get referrred to her? Can my specialist or GP get me referred there? And how long am i looking at to get an appointment?

    Once again i cant say how helpful you have been.

    regards Jonathan

     
    Old 02-29-2004, 01:20 PM   #6
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    Re: constant dizziness problems along with vision/fatigue/confusion/balance problems

    sorry i meant i can say you have been very very helpful!!

     
    Old 02-29-2004, 02:18 PM   #7
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    Re: constant dizziness problems along with vision/fatigue/confusion/balance problems

    just one more thing....... i have been lazing around the house depressed recently, well not lazing more like i can hardly walk outside the house!!! But anyway i wont be doing myself any favours for a quick recovery will i? Keeping active will help my brain reconfigurate more quickly, i this correct?

    The problem is I feel like i just cant go out though. It scares me. I think i am going to collapse all the time when i am anywhere apart from idoors. At the worst times (like now) i can only just cope being indoors. Are there any tips you guys can give me on what to do? HOw to start off, and when to start off going out again. are there any exercises that would help me? Should i get out there right away or wait until this relapse has passed before i start doing things again. i dont want to over-do things.

    I know that no one can put a time on the recovery phase, but if the illness goes into months - how long on average is recovery?

    thanks again jonathan

     
    Old 02-29-2004, 03:29 PM   #8
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    Re: constant dizziness problems along with vision/fatigue/confusion/balance problems

    Hi Johnathon,

    Fear not my friend. You have described all that I have been through to a "T". I too had a terrible viral thing going on for about 3 weeks in the beginning and had many of the symptoms you have described with it. And I had periods of up to a week where I would feel really good again only to get totally flattened by it, sometimes for no reason at all. The whole thing you describe about everything looking weird is normal for this too. I know what you mean...head fog, light-headed, all of it. I never had hard core vertigo either...instead, it's like you're looking at the world through a fish bowl. Hard to keep your eyes on a fixed point in the distance right? It really sucks I know but it gets better. Unfortunately the rate of recovery is so slow it seems undetectable at times. I have to constantly remind myself of how much worse things were 2 or 3 months back (I'm at 6 months now). Oh by the way, you are describing "viral labyrinthitis".

    One word of advice to you: keep a close watch on your state of mind with this beast. I started developing some very bad anxiety in month 4 followed by very short periods of nasty depression (like 5 hours at a time). It was clearly affecting my recovery and so I had to sort it out with medication. Prior to the illness I had never experienced anything like this before. It affects everyone differently....be careful about "avoiding" things due to fear. That's the real danger with anxiety problems in that it starts to affect your quality of life (ie. you stop doing the things you used to do). Even if it scares the pants off of you, get out of the house and keep doing the things you used to do as much as is possible. The fear will subside. It can't harm you.

    Feel free to ask any more questions. You're not alone and it will go away. Hard to believe, I know, but it does. There are some members on this board who have totally recovered after being through the wars for almost a year.

    Here's a good place to start reading about everything dizzy:

    (Approved by mod1)
    [url]http://www.opt.pacificu.***/ce/catalog/COPE7282/Dizzy.html[/url]

    Cheers....Scott

    Last edited by studyin; 02-29-2004 at 09:01 PM.

     
    Old 03-01-2004, 12:52 AM   #9
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    Re: constant dizziness problems along with vision/fatigue/confusion/balance problems

    Hi Jonathan,

    You said:

    On tues i will put this forward to my specialist, and if he just politely ignores what i say then i will argue it further by saying i have been on the internet and tell him what you guys have said, about being messed about and diagnosed incorrectly. If he still says its just a virus i will try to get an appointment with Linda Luxon like a few of you said. Is she just by referral only? Will it be difficult to get referrred to her? Can my specialist or GP get me referred there? And how long am i looking at to get an appointment?

    Yes, if you want to see Linda it is by referral only. There shouldn't be any problem getting referred to her, which doesn't mean to say you won't meet some resistance. Your Gp can do it, as can a specialist. My Gp referred me, it took a bit of convincing, she's very nice, but knew less about this condition than I did at that point and didn't actually know what a neurotologist was. Basically, although I am in London, the hospital was out of my catchment area. The reason she was allowed to refer me was because there wasn't a neurotologist in my catchment area. I think the NHS rules are that you can go outside of it if the correct specialist isn't in your district. The chances of there being a neurotologist in your area is remote. Obviously, if you go privately, then your GP is obliged, within reason, to refer you wherever you want to go, you're paying, all he or she has to do is write the referral letter, but hopefully it shouldn't have to come to that. It took me about 2 months to get my appointment from the time my GP wrote the referral letter. I phoned the hospital and asked them directly how long it would take, you can do this, they were happy to answer all my questions. Just phone the hospital and ask to be put through to neurotology. I am not allowed to give you the number on this site, but it's easy enough to get hold of.

    With regard to talking to your specialist on Tuesday about being referred, I'm sure you'll go easy, but try to keep them on your side. Obviously if you tell them about misdiagnosis and rubbish care people have had, the last thing you want to do is make them feel they are included in that category, denting their ego etc... Also, some, not all, specialists can get very touchy about the internet. Rather than understanding it as an excellent and helpful resource, which often finally gets people the help they need (this is true of me and many people on this board) , they imagine people go on it and work themselves up in to state, imagining they have things they don't. It's an infuriatingly patronising attitude some docs have, but it happens. I told my Gp the truth in my case, which was that I had been put in touch with a friend of a friend who'd had a vestibular disorder and all the same symptoms as me, he had been referred to the hospital I mentioned. Of course, ironically, the way he had heard about neurotology and the National Hosp of Neurology and Neurosurgery was from another dizzy sufferer on the internet, but it did mean I didn't ever actually have to mention the internet to my doctor.

    Anyway, I hope this helps. With regard to how long these conditions go on, well, it depends what you have. If you have VN/viral lab, then it's always difficult to say. Generally speaking the sooner you start vestibular rehabilitation - what are known as the Cawthorne Cooksey exercises, the better your chances of recovering more quickly. This is one of the reasons why it's good to get a diagnosis as soon as poss. Unfortunately, beyond that fact, it's a bit of a how long is a piece of string situation. Some people come on here with dreadful symptoms but get well in a few months, others, like me are ill for much longer, although as I said, the symptoms definitely lessen in severity as it goes along.

    In terms of getting out and about, I'm am loathe to give you advice until you have a definite diagnosis, but if it is VN, then yes, it's important to keep moving, allow your brain to compensate (learn how to work in tandem with the damaged balance nerve.) In short, the answer is to do it, but obviously not to over do it. There's no point pushing yourself to the point of total exhaustion and overwhelming symptoms, it's all about small steps initially, and as you get better you can build on that. Try going for a walk every day, that sort of thing. Do stuff to the point of starting to feel bad, then back off, then try again when you feel ok again.

    Good luck in getting your referral,

    best,

    hbep.
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    Old 03-01-2004, 01:34 AM   #10
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    Re: constant dizziness problems along with vision/fatigue/confusion/balance problems

    thanks again everyone,

    how weird is this illness?? I woke up today and i felt soo much better than the previous 2 days. I have so much more strength, i just cant understand how it can just come and go like that!!!! But now that i have been on this computer for a while i feel very dizzy again!!!!!

    i live in the North-West and i've searched the interenet for neurotology departments in my area, but i cant find any. Whether there are i do not know? Maybe my speciailst will know. If there are, then i guess it that means i have to go and see them. If there are not, then i can try to get referred to Linda Luxon. Anyway i will let you all know how i get on tomorrow. Wish me luck and thank you so much. :-)

     
    Old 03-01-2004, 04:31 AM   #11
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    Re: constant dizziness problems along with vision/fatigue/confusion/balance problems

    Hi Jonathan.

    I'm 23 and live in the north east - have just read your post and can identify with it all. I have had Labyrinthitis for 16mths. I have the same symptoms as you. The brain fog and tiredness and extreme low stamina I can relate to v much. It's all part of this mess!!

    Ok noone can put a time limit on this. But what seems to be apparent is that Labyrinthitis can go on for a lot longer than you read on the internet - there are cases like mine and other people on here, that drag on because the brain does not compensate well. I wont lie, it is a nightmare illness, v slow recovery ont he whole but VRT (like physio) is the key and if you go and see Linda (am shortly too for a 2nd opinion) she will put you on a VRT programme.

    I have got quite down with this as any chronic illness would. I am young like you and want to be out enjoying myself. It's abeen v difficult to deal with plus all the v strange symptoms. Try to remain positive, there are loads out here who have the same and in most cases it does go.

    The key is to get the right diagnosis, have the right tests. Definitely go to London. Good luck with the referral, if not go privately if you can, you c an always start that way and end up on the nhs. There are different ways of doing it.

    Keep smiling xxx

     
    Old 03-01-2004, 09:26 AM   #12
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    Re: constant dizziness problems along with vision/fatigue/confusion/balance problems

    Thanks, i have read things on the net saying that usually it lasts for a few weeks to 3 months. If this goes on for months and months and years are you guys sure its not something to do with Meniere's Syndrome?

    Anyway i got a list of those Cawthorne-Cooksey exercises today. I started experimenting (could this do me more damage than good by the way????) and i did most of the exercises - initially they made me feel pretty god damn dizzy for a few seconds - especially the ones where you move your eyes from side to side. It also made my ear get that pressure feeling in it. Anyway after doing them i did feel a hell of a lot better and i have been taking some kind of vitamin B and tincture of echnesea and ginko something or another, (spelt wrong!) which is meant to get your immune system back up and running. Whether im just having a good day i dont know, but i felt really great. I have had a whole load of confidence today, and i went for a walk on my own for about half an hour. I controlled the feeling of anxiety whenever i got dizzy, and it seemed to calm the dizziness down too. I then thought sod it, and went for a drive too!!! Im really chuffed. Ive kept active all day and kept my mind off it. Ive got a headache now thoug!!! I really really hope this is the start of recovery, and i hope my body isnt luring me into a false sense of security, and tomorrow ill be back down to square one. LIke a few of you said.....you get ill, get better, get worst and then get better again ..... hopefully i am finally getting better.

    I just thought maybe that the extra confidence was given to me from you guys, you really are great. Even if i feel rubbish tomorrow, i dont care as i have felt somewhat 'NORMAL' today!!!!

    checking out, j

     
    Old 03-01-2004, 09:33 AM   #13
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    Re: constant dizziness problems along with vision/fatigue/confusion/balance problems

    PS i have private health care, so will this aid me in getting a referral to Linda Luxon.

     
    Old 03-01-2004, 09:43 AM   #14
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    Re: constant dizziness problems along with vision/fatigue/confusion/balance problems

    Quote:
    Originally Posted by jonathanp
    PS i have private health care, so will this aid me in getting a referral to Linda Luxon.

    My daughter was dizzy and had what she thought was an inner ear infection but no insurance. I don't know how it works where you live but we have a lot of elderly people here who need hearing aids. They do this testing where they go into your ear with a camera and let you watch. They do this free to try to sell you a hearing aid. I know, it is dishonest, but I took my daugher there and told them that she needed a hearing test. They found a viral infection, a black mold growing on her ear drum. They attributed it to swimmer's ear and told her to wear ear plugs while showering or in the bath. We were able to get anti-biotics from her doctor over the phone so it only cost us for the meds. Saved us a bundle on tests.

    So, my mom came up with the same thing. Kept falling over, thought that she would never be able to work again. Went on for months. I sent her in to the same guy, same outcome, again, low cost solution.

    You may not have the same infection but as long as they are in there with the camera, which doen't hurt in the least, they can give you a free diagnosis.

     
    Old 03-01-2004, 02:47 PM   #15
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    Re: constant dizziness problems along with vision/fatigue/confusion/balance problems

    hey - had similar symptoms to you in August and supposed it was a virus. Initially couldnt eat because felt like I would be sick. This gradually decreased over time - the main symptom that remains is sommetimes feeling 'weird'. Like things are back to front, inside out, white is black ???? just generally bad. I found that any amount of alcohol at all increased the symptoms overall ten fold. Now I go to the pub and have a pint of lemonade (how embarrising) but I dont feel as bad anymore and have a full wallet in the morning!

     
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