Light-headed, dizzy & spaced out for 2 years, can anyone help?

Hi Laura,

Sorry to hear that you are in the same boat. I really hope this group sheds answers (for all our sakes) the more info we gather, the better! I feel like I'm learning all the time, process of elimination i guess. Years can go past though so I'm hoping to get an answer this year (I'm determined) 

With regards to mixing up your words - I totally get it, my memory is totally foggy, i truly believe it's because all of our energy and focus is on our balance?? Even when I try to pop it to the back of my mind, it's there slapping me in the face. 

Just out of interest, have you been tested for food alergies? Also have you had your breathing assesed? 

There is also a thing called POTS syndrome - check it out, you just never know! 

All i know is i feel really trippy and spaced and the ground underneath my feet can feel a bit spongy (if that makes sense) My vision is off too, even though eye tests are coming back clear.

Whatever caused it - I hope can be corrected! I live in Edinburgh and want to enjoy the festival this year!! Haha   

Hi ladies ,if up on FB ,keep an eye on the health shares ,come up with things to try for various things  I keep look out for the balance one to come up ,seen one on sinuses today. Always share any of them ,may help someone out there .Than taking these dr meds .your timeline shares a lot of good info ,to pass on .

Yes I always do!

H

My friends local do it to ,I was looking up on Glutten today ,surprised me symptoms to that ,Virtigo and few others ,now that's been said to me several times in the past especially as my eczema has been so bad ,plus my anxiety has been around same length of time ,never left ,never had that prior to an illness .All this has began since .So Glutten ? And all my aches I'd not had prior .? go look up Gutten ladies .I was thinking menopause back now I'm even questioning that today after the Glutten read .

Thank you Debs, yes I think it will be a process of elimination as a lot of disorders seem to have dizziness as a symptom!

I have looked at POTS syndrome - thank you for that- I have the symptoms but I have not notcied anything wrong with my heart, or feeling worse when standing up. I have most of the symptoms of ME, but think this is hard to get diagnosed.I have not been back to the GP yet.

I have nagged many GPs for allergy testing, where I was referred when I was a teenager but did not get them as they said I had asthma instead (only to discover two years later there was nothing wrong with my lungs so was just discharged). I am wondering why you ask if my breathing has been checked as I get out of breath just walking up the stairs (I am of a heathy weight and 28 years old), but I hadn't really thought about this until now.

I would describe the ground as feeling a bit spongy as well and I think my eyesight is poor even though I have had various eye tests and the result is okay.

I find it hard to describe how I feel - I feel so ill most of the time, where I can only describe it as dizzy, tired, sick and confused -my mind feels energetic, but my body won't respond! But I think perhaps it is just so tiring in feeling dizzy??

It is nice in a way to see others have the same symptoms, as I don't get any understanding from others!

I wish you luck in finding out what it is and hope you have a good time at the festival!

celiac disease can indeed make you feel woozy and out of sync! I thought I had it (again I was / am looking into EVERYTHING that makes you feel lightheaded, dizzy etc) anyway my tests came back clear HOWEVER my friend did say he had to go back again and demand another test, his results came back positive the second time round!!! 

Another reason for feeling the way we all se to feeling is lack of oxygen to the brain - this can be caused by chronic hyperventalation ie over breathing. This could be a behavioural pattern that has developed through time?! Just throwing ideas out there...I'm obv not a Doc but the more info we share the more informed we all will be! 

Does make you wonder ? We've all got these symptoms ,non of us getting anywhere ,going continually around in circles .

  I know several who had Neg results ,still complaining same problems ,hey 2 years on further testing yes they have it .So you've got to keep asking ,why are we still having problems .I don't have breathing probs ,yes I see what your saying ,better than doing nothing ,

  maybe a private full allergy is what's needed .get at least an idea what your up against ,then make changes ,see if improvement .

  Talking about Gluten ,only tonight there was a programme on talking about Gluten how odd was that  called Food unwrapped Ch 4 .I find these days white bread is a no go ,plus I can't eat tomatoes ,tinned ones I'm fine ,but not fresh ,so I have had to shift my foods around ,never had to do that prior ,why out of the blue ? Keep at it ,Debs .got to be a common denominator out there ,that's doing it .

Hi Laura

I have been dizzy now for over two years.  Ive had all the tests and scans and was scared I had MS.  After a panic attack I finally got to see a neurologist having seen many ENT, neuro surgeons and now neurologists.  He diagnosed me with silent migraine.  He says I have classic symptoms and is trying different medications.  I paid privately to go to migraine clinic in harley st london and they explained it to me.  When you screw your face up you use your corrugator muscle.  This irritates the big nerve that runs thru your face, sinuses, back of eyes, forehead, top of head and round back of head and neck.  This is then inflamed and whichever part of the brain is involved, hence the symptoms which are slightly different for everyone.  We paid for botox which freezes the muscle and lets the nerve relax and heal.  This stopped all the eye jumping symptoms and bad heads but never stopped the dizziness.  I am now waiting for more botox on the NHS.  I have to try three lots of tablets which dont work before they will do it.  Im on my 5th as some I couldnt tolerate.  Overall some have helped but I want to be cured.  I totally believe the diagnosis now its been explained but that doesnt help my lack of social life and this sodding roundabout that I just want to get off.  My neurologist believes it will stop its just a matter of finding the right tablets for me and there are loads to chose from.  Up to now Ive had propanolol, nortriptylene, topiramate, duloxetine, zonisamide plus all the over the counter stuff you can buy. The duloxetine and nortriptylene helped the most.  Mind really foggy though and Ive got an interview.  I know I wont be able to conjugate a sentence. 

Hi Marlene,

Well it's def something that is there every day but gets worse when excited / stressed / lots of visuals / tight spaces / busy spaces. Again this only started aprox 2.5 years ago, wracking my brain big time! 

Do you feel the same way most of the day or does it ever come and go? 

Debs I've had it every day ,never stops every waking hour  3 years now ,but a year ago it seems to have gotten far worse ,only time I don't notice it is when I drive ,same as Anne on this site. ,concentration I think ,weird no explanation other than to concentrate . I'm swaying / rocking as I walk ,when I'm sat ,it's still here .

  Stress had that since I got illness/ virus ,then my tinnitus got louder ,and allergies began ,more stress after virus finally left after 4 months of that ,but a mess left in its wake .

Hi Paula,

Thanks for that info it makes more sense. I saw a very nice ENT consultant who said it was miagraines and I felt reassured at the time as saw the similarities, having suffered with I what I knew as miagraines since I was eleven and he told me they evolve so to speak over time, but I had become less convinced due the almost permanent basis that I can feel dizzy, but you have made it make sense to me again as if it is everytime I screw up my face... that would be a lot of times!

I am hoping my GP can do more for me and give me some tablets that work, although I am not keen on taking tablets for the rest of my life,  especially as I got some side effects with the last lot.

I still want to rule out ME and a food allergy.

I hope you find something that eradicates them for you! And good luck with the interview! Try positive thoughts as one thing I do know about miagraines. .. the more stressed the more ill!

Well that sounds great Jan.  good to hear they treat you as a whole person, not a condition!!  not sure what the 'usual' vestibular exercises you mean.  the ones where you look from left to right, up and down?  Those ones?  The pad sounds good and I know someone else on here got a wii thing, but will wait for my appointment next week to ask about all that.  Keep,I. Touch and let us know how you progress.