Light-headed, dizzy & spaced out for 2 years, can anyone help?
Posted , 110 users are following.
Hi there,
I'm hoping / praying someone can shed some light on my extremely frustrating & somewhat debilitating symtoms. Aprox two years ago I started to feel a little light headed, I was working in retail at the time and the shop was incredibly busy (I have always worked in sales, so this did not phase me, what did cause me concern was how light headed I had been feeling) At the time, I presumed it was just a side effect from citalopram - something I had been prescribed six months earlier for feeling a little low. I did think it was strange that I felt woozy and light headed six months into the course as I had only previously experienced this feeling at the very beginning. I mentioned it to my doc and they agreed if i felt ready i should taper off citalopram - so i did. Slowly but surely i reduced my dose and presumed the light headed, dizzy almost drunk feeling would disappear - much to my surprise, i am still in the same state - blurred vision, wobbly, floaty and very very dizzy.
I have been to see my GP numerous times - my iron & bloody sugar levels, thyroid have been tested. They even sent me for an MRI scan and it all came back clear. My blood pressure is a little low but nothing too alarming and the ENT doctor said they couldn't find any inner ear problems (which I kind of thought would be the case because it's not a spinning sensation that you might expect from say labyrinthitis, it's more of a constant faint feeling)
It is a nightmare crossing the road or entering a busy supermarket. I am no longer quick on my feet and my memory is very poor too. I feel dazed and confused a lot of the time and extremely tired.
I'm only 31 and have a real love for life - can anyone suggest what could possibly be happening to me? I would be incredibly grateful as this god awful 'whatever it is' is really taking it's toll on my work, my relationship with my partner, friends and family (more so because there is no diagnosis as yet so I feel like people don't really understand what is actually wrong with me) every day I pray that this has just been a nightmare and I will wake up and feel normal again.
Look forward to your feedback...
5 likes, 227 replies
Dee-dee22 DizzyDebs
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Also hello to all the others who have contributed to this discussion. It's been helpful.
Sorry to hear that you have had to put up with this horrible feeling for such a long time. I can only hope you are feeling better (as I notice this was posted over a year ago). I can definitely relate as my experience with this dizzyness is identical to yours. And it's so frustrating that a large number of us are going through this with no real diagnosis or treatment for it.
Here's my story: I'm 35 years old and have had this feeling of dizziness for 2 years and 4 months to be exact. The first initial experience of it lasted a couple of weeks and then it disappeared. It then returned and stayed with me since. The symptoms I've described below are how I feel everyday 24 hours. I feel unsteady on my feet (not completely grounded), balance not quite right and find that my posture would lean more to the right, then left. Whilst sitting down I would be leaning more forward, or feel as if I was sinking back too far down on the sofa or just not sitting up right and need to constantly readjust myself. Whilst laying on the bed I feel as if my body was sinking too far in the mattress and I felt uncomfortable laying on my side because my balance felt off. Although I'm well aware the mattress is flat and level, it feels like it's sloping. Some days the symptoms are stronger than others restricting me from doing certain thing's purely because I feel unsafe to do so. I drive and there have been days when I'm driving it's felt strange. For example the car has stopped but it feels like it's still moving. One day I was out shopping and was walking back to my car. Suddenly my legs felt weak so I stopped walking and knelt on the floor to regain strength in them. My head feels fuzzy, not able to react and think as quickly as before. My eye sight hasn't been the same even though my eye test came back normal and my vision hasn't deteriorated. When focusing on text/television it takes me longer to get a clear sight.
Like yourself I have had a number of test with all results coming back negative. MRI scan of the head, blood test (thyroid, diabetes, vitamins & mineral etc, eye test, ears checked, reflex, audio, physiotherapy. Been put on medication (mainly intended for people suffering from depression, migraine or anxiety). I tried several different brands and strengths to which they gave me side effects making the situation worse. Drs told me there's no guarantee the medication will help or cure it and I could be taking them for a very long time. It was a matter of trying different ones and testing to see which improved symptoms. I chose not to continue taking medication as I'am trying to conceive.
I also sought alternative treatments from a chiropractic, osteopath, homeopathy, sports massage, tried elimination diet to which they helped very little. The effects were short term.
What I have noticed is that caffeine related products and diary products for me tend to bring on the symptoms stronger. Also when staring at the computer or reading on my phone (the up and down movement of the screen). Strong smells such as paint, perfume or smoke make me feel worse.
Before I got this dizziness, I used to be more active. I jogged regularly, attended yoga classes, pilates and generally enjoyed being outdoors. Like others have said about it affecting their social life; I don't feel like going out much and when I do, I feel the need to try harder to make myself appear ok. Because what we feel isn't obviously visible, people forget that there's something wrong in the first place and it's frustrating trying to explain it. My boyfriend thinks it's a mind over matter thing and and shouldn't let it affect me. Easier said then done when you constantly feel this way for such a long time and can't see no light at the end of the tunnel. It's a waiting game and I have to keep hoping it will one day disappear. But for the meantime I try to get on with life normally and have slowly exercising again. I refuse to let this thing control/rule my life.
Sorry to have gone on a bit. There's just so much to share and it's difficult to put it all in to words. I'm glad I came across this site even just so I can share my story with others that truly understand my situation. It saddens me to learn there are many others that have to go through this. I wish for you all to feel better soon.
crest Dee-dee22
Posted
Just read your post and thought perhaps I would share some information with you.
Regardless of there being no deficits with either of your inner ears (I'm don't know what tests you have had though) VRT is essential to try. Try them every day 3 times a day for 3 months and then see how you are. The Free you tube videos are great. Also there are two groups you should join, both are on Face book. The first is the labyrintus group and the second one is the MAV group (Migraine associated vertigo) mav is what I have but I don't have vertigo nor migraines. It's a very wide spread illness which I am treating with VRT and particular vestibular painkillers to try. Propanolol then pizotifen then if they don't work amytryptoline. I'm already a little better after a month of both. (VRT and propanolol) On the groups you will find many many people with very similar or the same symptoms to yours, who are either better, getting better or just starting to try. Many diagnosed and many not but I'd be very surprised if you didn't aquire very useful information from fellow sufferers. You could be suffering from a silent migraine or an uncompensated ear problem which could heal with the right actions. Also if you are in the UK the UCL hospital in London diagnoses you the same day and it's nhs. Just get your doctor to refer you. I found my local ent consultants absolutely useless. Mine also started for me last match 26th and went away completely after two to three weeks same as you then reappeared and I'm a year in. Both were triggered by alcohol. If you have noticed the food trigger then I would strongly advise the migraine diet, easily found on the Web. The gut brain axis is a strong link. I hope all this help in some small way at least. Good luck.
gillian76726 crest
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Dee-dee22 gillian76726
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Thank you for this! I've missed half of it but will definitely watch it on the Cath up channel.
gillian76726 Dee-dee22
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Dee-dee22 crest
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Thank you for responding to my message. I really appreciate the advice and links that you have provided me with.
My GP referred me to ENT and all test were clear. They then referred me to the Neurological specialist and yet again test came back clear. They'd initially thought the dizzy spells were triggered off by migraines. I suffer from headaches but not often and I have never experienced migraine. In the end, they diagnosed me with chronic dizziness with no real explanation. They resulted in saying often these symptoms are caused by stress, anxiety, change in lifestyle. As I'm trying to conceive being aged 35 years old, they've advise me to avoid taking such medication for the mean while.
I live in the UK London so will definitely look up UCL. And will follow the groups on FB you've mentioned.
Thank you again and hope you feel 100% better soon
jan1958 gillian76726
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gillian76726 jan1958
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dizzyear Dee-dee22
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Just came across your posts. These dizzy conditions are very frustrating and are difficult for the Drs to diagnose. Often the cause and treament is based on clinical observations without a test result that clearly identifies the cause. I have had the unsteadiness, off balance, type of dizziness I think you are describing for 10 years now and was properly diagnosed about 4 years ago. Reading through your symtoms of unsteadiness, head feeling fuzzy, tests coming back clear, eye sight affected but pass vision tests, I think it is possible you could have the same condition and there are a couple of tests that could help rule this out.
A couple of quick comments. head feeling fuzzy is commonly described as brain fog in may posts. Your vision is likely being affected by a symptom called nystagmus - eye movements that can make vision appear slightly blury which can be caused by noise or a weakness in you vestibular system.
The condition I have is called Superior Canal Dehiscence (SCDS) and it happens to be fairly rare so it is often not tested for. This condition is caused by a small hole that forms in one of the 3 balance canals (Superior Canal specifically) that are used to sense head position movements. The hole can be pin sized but can cause a large number of symptoms that are different for each person with this condition. The Superior canal is used to sense movement in the vertical plane like head nodding yes. The main possible symptoms are:
cronic imbalance, dizziness
noise induced vertigo/disequalibrium
Autophany - hearing your own voice loudly in the affected ear.
Over sensitivity to certain types of loud sounds
Aural Fullness - feeling of fullness/pressure in the affected ear
Brain Fog / Fatigue
High pitch ringing in the ear
Now, most people just have a subset of these symptoms, maybe only one. I started off for the first 6 years with just the unsteadiness type of dizziness with no other symtom, then I picked up a few more which helped the Drs to diagnose me.
To diagnose or rule out this condition, you would normally work with an ENT and get a special high resolution CT scan of the inner ear canals. A normal head CT scan is not useful because it doesn't have enough resolution to see the small hole. A second test that is often used is called a VEMP test to confirm the finding if a hole is observed in the CT scan result. MRIs are not able to diagnose this condition.
I am happy to discuss this more with anyone that is interseted, but I feel I have already posted an overly wordy response.
I hope you are able to get a diagnosis for your symptoms, because it is very frustrating not knowing.
amanda95449 DizzyDebs
Posted
I have been reading through this thread as i have also been experiencing similar symptoms for about 6 months now. have some information which everyone on this thread who has not had a diagnosis might find interesting. Like everyone is saying they are very very strange feelings to describe - feeling spaced out, dizzy/a whirling sensation, eyes blurry and congestion in the head amongst other symptoms. I initally went to hospital for a strange thing that happened to my vision called nystagmus (eyes jumping around like crazy). That has thankfully settled but i'm left with these spaced out and dizzy feelings. Every test has been done and im in the clear with everything.I was also told it could be anxiety but i feel like something else is going on. My life has been put on hold because of thses symptoms. It makes me feel like i'm going crazy BUT i decided to go see a psychiatrist as i have nothing to lose and he believes i have a condition which is very common but hardly spoken about. This condition is known as Functional Neurological Disorder - FNS. As difficult as it is to accept that this may be something i am experiencing it brings some relief to know that i am not losing my mind and this is actually a thing that happens to people. If anyone here is struggling because they dont know what is going on with them this website might be a very valuable read for you and might explain some peoples symptoms - www.neurosymptoms.org
I would love to hear if anyone is feeling better or has overcome their symptoms since their posts last year. Thanks
Marialovessun amanda95449
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johnnynotdizzy DizzyDebs
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Did you guys ever figure out and cure the dizzyness??
I was dizzy for 7 years and had every test known to man - including MRI's, blood tests, Neurological etc.etc, then I saw a Consultant in Leicester who diagnosed it and cured it in under 30 minutes. It was literally something so simple! I honestly thought I would be dizzy for ever and had almost given up.
Walking down corridors, supermarkets, driving, even watching the TV was sometimes horrible - but completely cured in 30 mins!
If anyone is interested drop me a line!
gillian76726 johnnynotdizzy
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Barnie johnnynotdizzy
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Bestie711 johnnynotdizzy
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jan1958 johnnynotdizzy
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johnnynotdizzy Bestie711
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Sorry for the late reply, I work abroad a lot of the time and everyone's replies went in to the Junk Folder. I promise I am very genuine.
I was diagnosed with BPPV - Benign Paroximal Positional Vertigo - PLEASE google it!!
Apparently it was the result of an ear infection - this is what happens - the small crystals inside the inner ear, which regulate balance, (they're calcium crystals) float loose and cause the dizziness. The Consultant I saw did a simple test which involved making me lie down quickly, with my head tilted over the edge of the bed, and apparently the eyeballs wobble, ever so lightly, and very quickly.
When he diagnosed it - he did some manoeuvres (all involved lying down quickly with specific head movements) to put the crystals back in place. It worked instantly!!!!
He then sent me to have a full set of tests called Calorics and they further diagnosed the extend of the problem.
I still sometimes get the problem, if I bend down too quickly sometimes it sets it off again, but they've taught me how to fix it on my own at home.
PLEASE Google it.
For years I saw neurologists, had scans, meds and everything. I promise you this is a genuine case.
If anyone wants to talk to me directly about it I am happy to do so.
I have only just joined this forum and don't know if everyone can see this reply - I hope they can.
It may not be what is causing everyone's problems - but from what I have read on here I guarantee it is what is causing some of them.
Also, apparently, this condition and it's cause and treatment was only discovered in 2009 - which is why when I first got it people struggled to accurately diagnose it.
brandymadtired johnnynotdizzy
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Please tell me how johnnynotdizzy I'm so tired of feeling this way