Light headed, headache, spacey feeling. Tons of tests done, no result.

yeah, I have the same symptoms. Its like, I feel like, I'm there, but not really, i feel like i cant think, yet posed with a problem, it seems as if i can figure it out, but i feel like its not me that's answering, i feel like its more if like instinct  like i feel like i can figure things out, just not how I'm actually doing it.

Hello,

  My name is Amy and in Sept/2011 I started getting severe headaches in the Occipital Region of my head, they are not like regular headaches, they are quite debilitating. 

 I do have neck pain and general discomfort in the neck, head and shoulders as well. This forced me to have to quit my Dental Assisting job in Oct/11 due to positioning of my body while working. I ended up getting another job as a Dental Receptionist so my education is not a complete waist.

 I have been going to Doctors and emergency rooms quite often since these headaches began. At first they did sent me for a CT Scan of my brain and nothing showed, all they wanted to do after that was prescribe me medication which I’m not really ok with. I want a solution.

 So the headaches and general neck pain and discomfort did got "better" in April of last year (2012) so I stopped putting the pressure on all health care personnel and figured it may just have been muscular and it just got better. Well come Oct/12 they came back with a vengeance and were even worse than I had experienced the previous year. I started to get severe neck pain where I couldn't even turn my head some days. I also stared getting other symptoms e.g. feeling like I’m going to pass out, really light headed, numbness on the sides of my head etc...I started going to a Physiotherapist in Jan/13 who then started IMS (Inter Muscular Stimulation) which did help with the severity of the headaches, an Acupuncturist (for stress and pain) and steadily going for Massage Therapy. I have been to see 5 different Doctors in regards to these health issues since Sept/11, one told me to stop eating chocolate and start wearing sunglasses; I am lactose intolerant and I rarely have any chocolate and I wear sunglasses when it is sunny. I have had tones of blood work and a EKG done. Again they just want to prescribe me medication.

 

 Finally they sent me for another CT Scan, this time of the neck (I would like to add that I have to drive 3 hours for a CT Scan as I live in a smaller town). It showed that I have a rotated C1 and C2 with soft tissue damage. Also 2 different Doctor’s that I have seen told me it’s a good sign I'm not showing any signs of parallelization!!?? I am now terrified that this I am going to become paralyzed. They say it’s because my C1 might be pushing on an Artery? At that point they wanted to refer me for an MRI. I was happy about that, but then the referral was misplaced and not sent until I checked with them after not receiving a call after 2 weeks that the referral was supposed to be sent, so finally it was properly sent. I found out a couple weeks later that they couldn't get me in until June!? They advised me that I can no longer see my Chiropractor until they find out what’s going on,  I also suffer from lower back issues which my Chiropractor really helps with and so now my whole upper torso is in constant pain (physio helps). I was obviously not ok with waiting until June seeing’s how I miss a lot of time from work already and cannot even physically work out without getting blurred vision and suffering from pain and discomfort for 3 days after a workout. So the Doctor I ended up finding (after I went through the 4 previous that weren't willing to work for me) got the MRI rushed for me and I'm not sure exactly what they were looking for but they said nothing new showed up except a bulging C5. Great more problems!

 

 So at this point they tell me because nothing further showed up on the MRI except the bulging C5 that I do not have to see a Neurologist anymore. Once again they just want to try me on Meds and once again this is not ok, I want a solution! I did try the meds and they didn’t help anyway. So after I thought about it further I did go back to my Doctor a few days later and requested that I still get referred to a Neurologist. He said ok and that he also wants me to see a Sports Therapist because it may be due to injuries from my past (not any severe ones). It had been 3 weeks and still no call to set up an apt! So now I have been on Medical Leave from my job since Mar.13/13. I am extremely stressed out about finding out what’s really going on and whether or not I will end up paralyzed. I feel terrible all day everyday physically and emotionally. I am feeling extreme guilt from missing work and not being able to help my co-workers and I am very stressed about what may or may not be a serious problem that I have.  Once again I would love a solution to all this and not to be so frustrated all the time.

I went to see the Neurologist and Sports Therapist on May.16/13. The sports therapist said that the problem is most likely from my bad posture; ok but I already do posture exercise’s and that’s really causing this many problems for me? Hhmm.. He gave me 2 Cortisone shots in the occipital region. I have been in so much pain since that I’m in tears every day, needless to say I’m not impressed. I realize he is doing his job and that’s great. I was more than willing to give them a try, they could have helped like they do for a lot of people. I am just so frustrated all the time from not being able to live my life due to pain, discomfort , light headedness and numbness.  The Neurologist said everything seems fine neurologically which is great news, but again I’m just very frustrated because I’m still so confused as to why I am so light headed and feel like I could pass out about 60% of the day some days. Also why am I having numbness? He says that it could be my blood pressure but I am constantly getting different blood work and testing done and everything looks great…  Today is May.20/13, my next doctor’s appointment is May.22 so hopefully we can get this figured out soon.

Thank you for your time.

 

Hello, I’m a 19 year old male who has been struggling to find an answer to my symptoms for months. It feels like there is pressure within my head and this pressure is severely impacting on my daily life and routine. I feel constantly fatigued and lightheaded; sometimes I feel faint but never actually do-lightly shaking most of the time. I feel fainter when standing for a long time and it helps to put my legs above my head. The glands at the back of my neck feel swollen and slightly hard, and the pain is centred in my upper neck/lower skull yet often moves.  I have mild/severe headaches in different parts of my head. It feels as though there are bulging veins in the top of my head on each side and also pressure –possibly deep within my ear. I’ve had countless blood tests done to rule out anemia, diabetes, temporal arteritis etc. but still can’t find any answers. I had an irregular heart rhythm when this thing began and after tests, the doctor said my heart is lying in a funny position. I still find myself struggling for breath, yet I wouldn’t say I’m a really anxious person. The head symptoms didn’t begin until later and have got progressively worse since.  Not sure whether it’s related but I had glandular fever three years ago and was left with chronic fatigue, but my symptoms have never been as severe as this.

yes it sure can,,i too have been through all that you said and more and my symptoms I had everyone you said and then some,,,i went to dr after dr,,they were making me feel like maybe I was a bit crazy,,lol,,it causes anxiety pressure in the face ,,tingling in hands,lightheadedness,a fear feeling tired alot strange dreams and a lost feeling blurry vision,,and I got tired of test after test and not finding things and trips to the er,,I went to the chiro an it was back to normal in about 3 weeks,,,in fact its been yearssss,,lol and here we go again,,but now in a diff state,,even tho I know whats going on,,or should I say alot of the same things I done been throught,are happening again,,im still doing the test to make sure there is nothing going on,i will go back to the chiro again,,

This could be mi[d MS it has many symptoms and is difficult to diagnose. Have you had an MRI ?

Please list your symptoms when writing, rather than just saying "I get these symptoms" as I qustion if the author is referring to the symptoms of the title, or the symptoms others add to their posts. Many have put words into my mouth to best clearly describe some symptoms I have had trouble putting words to...

 

I keep coming back to look, read, copy and paste, in an effort to decipher all this - write my own thing for a doctor, written so I don't miss anything, or the doc doesn't.

 

The most helpful recently was to research the cervicogenic dizziness suggestion made earlier. Suggestion was made to find someone who had studied CD to a phD level, yeah, well, right you think ! I found a youtube on the topic that was a presentation at a conference by someone doing a phD - I am assuming it was in CD. Was at a conference for APA in Brisbane Australia Nov ? 2011

Whoever made the suggestion in here also said all these symptoms sound like CD - what symptoms? , title symptoms or the additional ones we have all put up ?

 

I watched its 15 odd minutes many times, took notes, learnt that dizziness can be described in a few ways.

It helped me write my kind of dizzy so there is no confusion for the medical side, as I felt criticised by a top ENT by saying nothing wrong with my balance system and that dizzy was the world spinning by. I can now say I get #1 for sure

Four groups of dizziness used in discussion

 

1 disequilibrium , imbalance or unsteadiness  CD only deals with this type once all other (4 of 5 to go, this is 1)'filters' have been applied to differentiate who can be helped along CD lines - ended up less than 1% in her sample. Sounds like CD involves muscle work around neck and shoulders and not CV, CNS (central nervous system) etc

 

2. Vertigo is the spinning sensation - rotary dizziness that can be caused by CNS or vestibular system

 

3. light headed, faint, pre syncopy type feeling can often be cardio vascular related

 

4 psychogenic dizziness

 

I also used the wiki for occipital neuralgia for occipital pain term used in the conference presentation

 

all this lead to interesting reading on things such as cervicogenic headaches, photphobia and photosensitivity in humans - all on wiki - just all helped in easing mind its not this or that, or feeling a similarity to topic, and maybe givng me more terms or descriptions to add for notes to the doc

 

Fairly dark orange 'sunglasses' for cloudy days helps me immensely. Rsearch the irlen technique for coloured lenses for things like dyslexia .....

.Quoting from this post "I am a 36 year old female" , this part "felt like my ears were plugged and could hear myself talk! Several weeks later, half my vision greyed out, then half of my peripheral vision greyed out! A week later, i began getting blurry vision when I bent my head down or back"

You said these symptomms were after a head cold - I myself get this "can hear myself talk" thing and understand what you mean by saying that. Some may think "of course you can hear yourself talk!"

We do hear ourselves talk but I read it as a symptom I get at times when things weird out and it is different, not sure if it is that ones voice sounds different or there is a mental processing delay to make the sound of voice different to your brain in these times and it concerns me at the time as all other symptoms do!

I also get a funny blurring of vision while bent over forward, not sure about backwards.

Always had concerns about chiropractory yet they are accepted by medical funds, still in business, have consulted one once only yet got a sudden freebie stiff neck fix once by a guy 'practising ' in neck cracking.I was told to stand back to him, put arms out, he came in behind, stuck his arms under mine and picked me off the ground and crack - fixed! Not so sure why I am shy ? Annie Lennox of the Eurythmics has a bad tale to tell .....

me again, just been reading up on wikipeadia on the topic I mention just last irlen technique , may more technically be known as Scotopic sensitivity syndrome as it is in wiki. I identify with this ! I spent the last few fog bound days wearing a basic dark industrial orange lens eye protection and warded off many of the weird symptoms I have had for 31 years!

I like to think I am getting there - finding more pieces to my puzzle.
This condition - irlen- has its critics and say that to correct vision defects can make patient no longer need the colour lenses - but it is whatever floats yer boat.

I now have many more answers in life :)

Just ned to work out why I get lightheaded in cold - cold things can just suck warmth from my head and then make me feel odd - a simple hat may help !

I am back, dyslexia just does not sound like it has a play in these set of symptoms but my goodness, things are complex and related. I found a website in Australia of all places, they use a dot com dot au ending, and this one site is a bit like dyslexia services and has information in a research section depicting brain scan images of a normal persons brain and one that is of a scotopic sensitivty syndrome person either trying to read or hit by lights, then a third scan of a scotopic brain reading through an Irlen lens of a particular colour that was found to suit them. I think there is something like 270 colours available to test people out with! Mate, the brain scan of the scotopic when brain is affected by reading or lights is jut so busy - if the increase in activity is correctly represented by red - it is suddenly four or five times as active all over the brain image !!

And on their site there is a photo of someone wearing the dark orange lenses !! I mention above .

Migraine also gits a link in with this !

Thanks for such a world wide message board :)

Hello Everyone.

I have read only a hand full of the posts on this forum, but the ones i have read i have had a great similarity to. My symptoms started about 2 and a half years ago. I was on a regular schedule of going to the gym 5 days a week normally, then i suddenly switched to needing to sit down most of the day to work on school work for my college classes. Within 3 or 4 weeks, i started getting the spacey feeling in my head. I assumed it was things like dehydration or high blood sugars since i am close to being diabetic. Over the space of a couple years, i started getting the Dissociative symptoms (spacey/detached/dizzy feeling) all day every day usually kicking in not long after i got up in the morning and lasting the entire day. I have been to several family physicians who suggested things like anxiety and depression. I was put on depression meds which made me feel worse over time. I have been sent to physical therapy, chiropractors, and neurologists. They have done several test including catscans, EEG's, Xrays, and most blood tests which turned up nothing wrong. I even went to a psychologist thinking the dissociative symptoms were all in my head.  I have finally come to the conclusion that it is not in my head, that the dissociative symptoms are really caused by some physical problem. In the past 4 or 5 months , i have gone back to the gym on the same 5 day schedule, and am even in better shape now than i have ever been in the past, but it has not corrected the dissociative symptoms that i still get every day. I have always suspected the whole problem is spinal related. At first i thought the problem was in my neck or upper back. In the past few weeks, i have started to realize the problem might actually be in my lower back near the tailbone. Arching my lower back and stretching the muscles near the tailbone eases the dissociative symptoms right away. Excessive walking has brought on the dissociative symptoms, although i felt more clear headed the next day. I have had numbness in my lower back and legs when trying to stretch the lower back muscles. As a general guess, i tend to think there is something not right in my spine which is creating pressure on the spinal cord or the nerves connected to it. If any of this sounds familiar to anyone, please let me know via this board. I will check back often for replies. 

Thanks, Mike

PET - Patulous Eustachian Tube is worth researching if you get the above mentioned "hear your own voice" symptom. Sounds silly to a non sufferer but is is how was described and I understood it. The term "autophony" turned up after the  "hear your own voice" was mentioned in a web based medical advice site. Has something to do with the valve of the Etube as they call it, sticking open when it should be able to open/close or somewhere in between

Heres an update for me with the lower back issues. I started targeting the muscles in the lower back specifically during exercise. Along with a lot of walking has pretty much kept the dissociative symptoms (spacey feeling) to almost zero. On an average day when i am sitting down a lot. The spacey feeling makes me feel about 60 to 70 percent of my normal self (when i remembered feeling normal). With exercise to the lower back muscles, i have come back up to 90+ percent of my normal self. I know this treatment wont work for everyone because everyone could have different issues that create the spacey feeling, but i know full well how hard it is to live with the spacey feeling all day, and it is easy to think that spacey feeling could come from a different part of the body like the head or neck, but this one helped me majorly after 2 and a half years of dealing with it.

Chronic Sinusitis. It will do everything described. Sometimes Cs is triggered by air conditioning like an allergy. It is yeast bacteria building in sinuses and inflaming them, you can even breathe normally. It worsens with sugary foods and alcohol. For some the yeast bacteria enters the sinus due to gastrointestinal issues forcing them to 'flee' to higher ground so to speak. Try to get at least 7 hours sleep at night (melatonin may help) and increase vitamin c. Foods that irritate: bananas, mushrooms and some acid causing foods if it's gastrointestinal, such as GERD.

Heya guess wat m going through the same thing since a month :/ n its so weird that nothing has been diagnosed so far! but something that worked for me which i'd suggest to u 2 is that i increased the nutrient supply ( especially iron , zinc with folic acid ) n that has reduced the frequency as well as the intensity of its occurance...
do tell me if they found something in ur case :)
all. the best . take care :)

Hi all I have been having the same problems for six months now and have been to the ent. Still no answer to what the true cause is. Has anyone gotten a true diagnosis with results to help clear up their problems? I need answers quickly because I am in the military and may be booted out because of this.