hi,

i am having a lot of strange symtoms, and i have been posting on the inner ear forumn as i am not sure whether this is something to do with a vestibular problem, or some kind of post-viral illness. This is my story:

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).

Recently the dizziness has eased off slightlty, and it seems that i can be ok for a couple of days, and then be really really fatigued for a few days after. The more sleep i have the worst i feel. I slept for 2 hrs in the afternoon yesterday, and 12 hrs last night and i feel awful today. Have any of you suffered any kinds of these symptoms after a virus:

chronic fatigue - aching muscles 24/7
very bad anxiety going to busy places
awful dizziness in busy places
constant light-headedness
tiredness
blurred vision
headaches every day
sore eyes
confusion - difficulty getting your words out at times.
one day you can feel ok - the next your very very fatigued?
brain fog - dont feel 'normal' but 'spaced' out all the time.

I have been back to both specialists this month, and my neurologist said i dont have ME/CFS, and he does not think this is something to do with an inner ear problem. I went back to see my ENT specialist again, who said he would send me to do some balance tests etc, to rule out any kind of inner ear disorder. He does not think its something to with my ear, and he said he is going to send me to a post-viral specialist, after the balance tests, who can rule out any kind of ME/CFS problems.

Have any of you guys suffered these symptoms after a virus? Does this sound like post-viral fatigue, or something worst like CFS in your opinion. Im confused as my specialists seem to have little communication with each other. One is saying its not CFS, whilst the other says it could be, or some kind of post-viral illness. Im confused.

Please please help as i am really down and 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.


regards Jonathan

Hi,
I have seen your post before. Sorry I cant give you any answers all I can do is tell you that there are others who feel as bad. You are not alone. My probs started at the end of June last year. Since then I lost my job never had insurance and have lost unemployment. I have aplied for disability but I was told that chances are I wont get it. I am 35 with a wife and two kids.

I was sick with flu like symptoms three weekends in a row and on the third I made it to work I felt so bad I could not get out of car except to pee and I did that a lot. I new that something was very wrong because I had never felt sick like this before. I was dizzy with a slight fever and chills. I felt sick to my stomach, achy and spaced. My head hurt so bad at the temples and base of skull. I urinated 19 times that day. That was a bad day and I am glad I have not had another day like that one but every day since then has been bad too.

Lightheaded 24/7
Spaced out, like in a dream 24/7
Fatigue 24/7
Eyes are whack, slow to react, blured at times and sensitive to light
Ears full
nose slightly stuffed but dry
Headaches at temples and base of skull, once a week use to be 4 days.
Anxiety in crowds
Depression
Hot/ cold sensations in back, shoulders and arms
Buzzing sensation in back, shoulders and arms
Heavy sensation in back, shoulders and neck
increased leg pain at ankles, knees and lower back
Sleep problems

Pretty close to your syptoms. I have had a couple of good days like camping trip with family, pretty much any time I get out in natural places I feel no depression or anxiety but I still feel everything else. The last day I felt normal was June 20, between flu like illnesses.

Hang in there and keep me up to date on progress.

Derek

hey
im also in the UK (bournemouth)!! i had a "virus" for around 3 weeks before then relapsing with ME/CFS/FMS. Mine sounds very similar to yours but not as long, I could barely stand i was so dizzy and had to lie on my side all day, also sick and had very painful headaches, after 2-3 weeks i got better and tried doing normal life again, bigg mistake - relapsed into ME! i went to docs who decided that i had a virus, but tested me for aneamia (??) cos i was so pale -always am, then by the time i was tested for glandular fever n a few other viruses it was 5 weeks after i was first ill so they had gone n id got ME by then!!

however it maybe that my ME is linked to a hepatitis B injection i had 2 weeks before i started to get ill!!

I was sent to a rheumy after being ill 3 months who specialised in ME he told me that i had "post viral fatigue" basically ME but it cant actually be clinically called that until you have had it 6 months. He was ok not v helpful just gave me name of physio to try doing graded exercise n pacing with, she gave me some ex but couldnt do much else so left it at that. Im now much better not fuly yet but getting there slowly, the specialist predicts 3 years to full recovery so got a bit yet!!!

at the mo -17 months later, i am being tested for other things finally, and i really hope they are negative!

Get tested for as much as you can, tho it sounsd like you have already been tested for a lot, ask for a ESR which will tell them if you have any inflamation anywhere that could mean you have lupus or arthritis or a rhuemy disease. Other than that ask your doc to refer you for physio n try to very slowly build up the exercise you do, I currently do 10 mins 4 times a week on a cross trainer, very slow but i am now building it up n getting muscle tone back etc. Maybe just walking if you can manage it?

sorry not much help, keep us up to date with how you are etc
sam xx.

I also have experienced many of the same symptoms. It started out in Febuary of 2002 with a flu virus that lasted over a week. I was off work for that whole week and then went back to work the following week totally exhausted. I have been with the same company for over 19 years and never missed more than 1 or 2 days before at a time. My symptoms were very high temps and chills the next minute. It took all I had to get out of bed and make it the bathroom, thats how sick I was. After a couple weeks I had to be taken out of work because I was so exhausted. I went back to work about 7 weeks later only to run my self down further. Again I was taken out of work because I was falling asleep standing up. Finally I got into see a nuerologist who did MRIs, then I went through 2 sleep studies. The first one suggested Narcolepsy. The second study suggested Sleep Apnea with Restless Leg Syndrome. I am on the maximum stimulent (amphetamine) they can give me. I wear a C-flex machine at night to help me breath (which doesn,t help the fatigue at all). Along with a host of other medications, my symptoms have not improved a whole lot. Along the way the pain throughout my body has continued to constantly get worse. Every muscle in my body feels like they are one size to small. My lower back has gotten so bad that I get a pins and needle tingling radiating from my lower back up, and sometimes down my arms. It also feels like something is crawling under my skin, this makes me want to jump out of my body it is such a weird felling. Again all blood work has come back normal. I also experience the mental fog, have a hard time with word recalling and do get depressed at times because of my lack of energy and pain I experience. I am 42 years old and have 3 young children, but some days I feel like I am 80. I have recently
had an evaluation with a Doctor who thinks this could be CFS. But it took over 2 years to get that diagnosis. Needless to say I am back out on disability