Ive seen alot of posts from people out there experiencing virtually the same symptoms as me, so I thought I would give this a try to help me feel somewhat better and possibly get some answers. So here is my story. Back around the first to middle part of August I begain experiencing a dizzy lightheaded and/or heavyheaded feeling constantly, it came on suddenly one day and just never left me. I went to the ER like 2 weeks after it began and was dismissed as having a virus after some bloodword with elevated white blood cell count. So it continued on then about a month later I went to a general dr, and was given antibiotics for 2 weeks and a steroid predisone for 5 days. Well neither took away the symtoms but the steroid made me wake in the night with the blood vessels in my eyes pulsating horribly with an awful headache so I stopped taking that. Next on to the ENT where I had a hearing test and was examined hearing perfect had a CT scan of sinuses and I DEMANDED one of my head with contrast. Both came back fine. During this time my symptoms got way worse as did my anxiety of thinking I had a Brain tumor. The dizzy odd feeling is always there, but the anxiety of thinking I had a tumor and acually preparing myself in my head for death had caused me to clench my jaw so tight that I was actually causing myself tension headaches the ENT had one useful bit of advice, to keep my jaw loose which I did and it has helped with the headache part. But now I am all hypersensitive to everything about my body some days its just the weird feeling some days my neck feels all stiff and almost like the blood vessels in my neck are constricted causing limited blood flow to my brain. My heart pounds when I stand up and other times for no reason I have had some chest pains and this odd cold feeling in my chest at times. When it first started I had different parts of my face go numb but I am unsure which symptoms are the anxiety and which are the actual. Its all so frustrating the only REAL TRUE symptom that never goes away is this feeling in my head like a brainfog dizzy odd lightheaded/heavyheadedness just not normal me. I cant enjoy anything anymore I dread things I used to love. Im only 26 I just want to be a good mom and wife and this is ruining my life. Ive been to the neurologist and he did bloodwork for lupus, lyme, b12 definincy, west nile encepilitis, and a few other things all negative. I have an appointment with the cardiologist this week, so we will see where that leads. I have asked the Neuro where we should go next with this but still have not received a phone call back yet. Its all messed up its like I have to figure it out on my own and tell them where to go next ya know? I have heard that Lymes usually doesnt show up on bloodwork. I dont know I just want to wake from this nightmare and be me again, I constantly spaz out thinking I am going to die. I also have a horrible sensitivity to light as in floresent lighting I cant even barely go into a store and can hardly tolerate the drs appointments. This makes things hard as well. My husband now has to do all the shopping on top of working a 60 hour a week job. I have 2 little kids one is 6 and one is 2 and I can hardly stand to be around them because they are loud and move alot and it makes my head spin when all I want is just to play with them and be normal. Please if anyone is feeling similar symptoms lets talk about it I really need a support system of people feeling like I feel. I feel alone and the anxiety is hard to place on the back burner not knowing what is wrong with me.

Go to the inner ear board.

Ive been to an ENT its not an inner ear problem its also a constant dull ache headache that never leaves and becomes a horrible headache every so many days.

Ive been to an ENT its not an inner ear problem its also a constant dull ache headache that never leaves and becomes a horrible headache every so many days.

I have generalized anxiety disorder and seem to have similar symptoms. I am constantly dizzy and experience some brain fog. I have had a CT scan which came back fine, but I don't know if I shuold go to a neurologist. All the Drs. just tell me I had GAD and give me anti-depressants and anti anxiety. Do you experience any nausea? cold sweats? anything else?

Is your brainfog constant? Or like a constant presurre in your head that NEVER goes away sometimes better than others? I do have a mild amount of nausa especially in the morning. I also have shaky vision at times and like a buzzing feeling in my head sometimes too. Also sometimes floaters in my eyes. Also the back of my neck at the base of my skull hurts too. I dont really have the sweats or anything like that though. I have anxiety too but my anxiety is caused by my feeling so yucky all the time. At least I think so, because I can be fine not feeling any anxiety at all and the symptoms are always there then when I start to feel the anxiety come on then I do feel worse but I think If it were just anxiety there would be some sort of break in between and these symptoms never let up. Im still undergoing testing for different neurological problems. Today I had two different types of eeg's done and later in the week a chest xray next week I will probably have an MRI. If its none of those things Im looking into Cronic migraine or TMJ If not that then some sort of neck problem I have heard having neck problems can cause all sorts of wacky stuff too. So then if its none of those things then I guess its all in my head literally. I have also had heart tests done that seems to be fine. The doctor is looking at MS or seizures right now. I had a Lyme disease test done but I have heard those are notorious for giving false negatives. I dont know what are all your symptoms??? Doctors often like to write things off as anxiety if you really feel there is something beyond that then you are probably right and it is always best to have it checked if only for peace of mind. Let me know all your symptoms and I will keep you updated as to if we find what it is or if it turns out to just be generalized anxiety disorder. Hope you feel better.

Amber, join the club. I have had the exact same sypmptoms as you for the past 7 years. Mine started one morning when I awoke and hasn't stopped since. I have been to numerous drs and had numerous tests....all come back normal. MRI, ENG, 3 hearing tests, 2 vision tests, blood work, etc.......
I finally found the TMJ posts and low and behold, that is what I have. I just had an exam by a specialist last week and had an xray of my jaw as well. I have a follow-up appointment next week to discuss the results of the xray.
The best way I can explain my dizziness is a rocking, swaying motion that never ends. If I go to the market and start looking around...BAM it gets worse. At nights the flouescent lights in my living room make me squint. I have had 3 migranes and I suffer from headaches on a daily basis now. My neck is always tense, I have lower back pains and the energy level of a snail.
According to the dr, these are all symptoms of TMJ. I wish I learned this years ago before the countless drs telling me nothing is wrong with me. My head always feels like it doesn't belong to me and my eyes aren't in sync with my brain. I can't explain it any better. Anyway, I hope this helps you. I suggest you see a TMJ specialist so he/she can examine you.

Hope you feel better

Amber:

I would see a Headache Specialist or Neurologist who specializes in Headaches... The sensativity to light is a sign of maybe Migraine.

I wnet thru a similiar situation for 3 years where I was diagnosed with just anxiety. I have Chronic Nausea, Off Vison , Feel off, head pressure or heavy head, You feel like you said off from your body. I was diagnosed with Chronic Migraine called Vestibular Migraines. I was put on 3 drugs Zoloft, verapamil, Klonopin by ther Neurologist. I was 100% for over a year and they tried to see how I was off the medication. I was good for another 6 months. Then the seasonal change triggered me back into a migraine state. Without Medication I relapsed. I am week 4 intoi the relapse back on medication as the medication can take months to work...I would look into that.....

Howie

Hi Howie,
Thank you for your response that makes me feel better. Ive been praying that it is only migraine or even anxiety. Ive been seeing a neurologist and he is doing all the appropriate tests and I assume after I get the MRI and a chest xray if nothing is found then I will try the migraine meds hopefully. I brouhgt up migraine and they dont seem to think it is he is leaning more towards MS he said migraine wouldnt make me dizzy and presurre 24 hours a day for 4 months but I have seen many people saying it does, so if everything else turns out ok Im going to push the migraine issue. Thank you again for your post it truly helps the anxiety I am experiencing about this situation, I have imagined that it is a brain tumor or lung cancer since this whole thing started. So thank you.:) I hope you get to feeling better again really soon!

You need to see a headache Specialist. If you look on line Chronic Migraine Defintion:

Chronic migraine implies symptoms that occur more than 15 days per month and often daily and constant

Mine is more Specific and is called Vestibular Migraines...
With that being said I had all the test you did and before you can assume Anxity or Migraine you need to rule out everything. Try to stay calm...

your symptoms do sound typical and Migraines and Anxiety go hand in hand.. Thus Zoloft is a treatment

hey there!!!
i just came on this after almost a year of suffering, i have almost identical symptoms to yourself!!
mine had been with me now for a yr and ive had many tests all non conclusive including visits to a cardiologist, blood work and a visit to a neurologist!!

im only 24 an one night i went to bed an woke up in sweats with my heart racin pains in my chest an severe dizzyness these feelings have been with me ever since every day:(

these days i am now unable to do any exercise as as soon as i rasie my heartrate it feels as though my heart is thumping in my chest!! mine happens also jus of standing up! its a very unpleasant sensation i asked my friends does this happen to them an they said no!
my daily symptoms r aches in my arms an legs headaches chest pain an a general lighheaded buzz all day every day im really worried cos i should be in the best of health specially at my age!! i also got the impression doctors tend to think just because your young doesnt mean you cant be sick when its far from the truth!

i have now been told i must jus get on with it an he gave me medication for anxiety although i refuse to take it, before this happened i was a very active person who was exercising 4-5 times a week and a active social life without any worries!!
i think whats worse is that you actually dont know wats going on with your body as doctors cannot tell you that u have an illness, i really feel for you having children aswel as wen im feelin like this i jus want to relax so i can imagine how hard it is for you!!
hope you find out more progress on your situation an keep me updated good luck ;)
thanks

i would have to agree with Howie...i have similar problems for the past 6 months now, but now mine has morphed into mostly vision issues and headaches on almost a daily basis (sometimes just a quick pain behind my eyes). i have had ALL the tests done under the sun like you, and the only difference was my B-12 was low, and I have been treating that-it is now within the correct levels. however, my symptoms are still here, so they definitely think (like in howie's case) that it is somehow related to vestibular migraine. i was prescribed nortriptyline and i will start taking it this coming week. i am also your age and i feel so alone with this...don't worry though, an answer will come :angel: i have been hangin in there goin insane, but at the beginning of all this my anxiety was so high, i was having panic attacks (have never had one before) and had to take xanax for a month to calm myself down.
hang in there:)

DizzyAmber,

I hope you have been able to find out answers. To me it rings of Migraine associated vertigo (MAV), but I am not a Doctor. It all sounds so familiar to me.

Good Luck and keep us posted.
Pam

Yeah that sounds like Migraine Associated Vertigo to me also. I went to UCSF (Univ. Of San Fransico) and the doctor told me its a 98% thats what i got and those are my symptoms. I feel off balance, spin occasionally, and I get bad headaches. So perhaps searching for a really good doctor like at a Univ. or something would be of good benefit to you. Good luck! Best wishes!:D

DizzyAMber,
That sounds exactly what I have. I was dx's with Migraine Associated Vertigo. It was so horrible. I couldn't shop due to the lights, I coudn't drive. There really isn't a specific test to verify it. They usually just try you on a preventitive migraine med and if it works then that is what you have.
I took me 9 months and 9 specialist before I was diagnosed. Finally, it was a vertigo/inner ear specialist who diagnosed me.
Good luck.

Small update. More tests still nothing. MRI is all that is left. But I stopped all caffeine intake and no chocolate or ice cream yogurt and some grains. So It has improved slightly enough that I can now get things done rather than just lay on the couch all day. I still have dizzy spells and that weird feeling but now I have been able to notice that the weird feeling is still there and noticeable most to all of the time but usually becomes stronger before a BAD headache and then after it It starts a like a day or two before and lasts a day or 2 after the actual headache and the headache lasts all day until I sleep which improves it. I was feeling pretty good until......... da da da......... I ate a twist Icecream and excuse this but got my menstral cycle. About 30 minutes after eating the icecream I got a bad dizzy spell and then the feeling became worse the next morining I got my monthly cycle and behold horrible headache for 3 days. I have a bad headache at least every 2 to 3 days sometimes lasting for days at a time. Its all in my temple area. Stoping the caffeine has made it better enough that I can recognize a pattern to it. Before it was just constant pain dizzy confusion so much that I couldnt even think let alone establish a pattern. So I am thinking It really is some form of migraine. Lyme is still a possibility in my book since it can cause migraine. But vestibular migraine does sound very probable to me since you can have that and the regular headaches too. I think I may have several things going on hence the weird array of symptoms. Anxiety= chest pains shortness of breath palps ect. and then the rest are due to this condition. I apologize for the length of this just wanted to give a full update and maybe toss around some ideas for others suffering from simular symptoms. I will update again after MRI when I finally possibly get a diagnonsense. Thank you all for the wonderful support you have given.

Hi,

I was wondering what meds you guys are on for the MAV and if it is helping?

Pam

Hi pam, Im not on any as of yet. I know limiting some foods can help, and as far as meds they usually use regular migraine preventitive meds or SRI's I have heard alot of different people swear by different kinds I usually just depends upon the person so it is important to discuss this with your doctor and he or she will be able to best help you find the med that works well for you. If you want more specifics it may help to post your own thread you may get more specific answers. Hope you find the help you need.

hi there, get the book called "heal your headache" its very informative! well worth a read

i have had a heavyhead for a while no everyday i wake up 24/7 its there and really annoying at first i thought it could be migraines but theres not reeli a bad pain there just some sharp pains now and agen i get dizzy when im lying down and feel unstable when im standing up,i play football and this is really annoying that i cant do the things i love.my eyes are always strained i sometimes get a weird feeling in my ear and also have had a runny nose and always blocked since this started im getting really worried as im only 16 cant sleep at nights anymore i dont feel the same person.im scared incase its somthing really serious but people have been telling me to see and ENT specilist if it is something to do with that could it be possible if not seen too it gets worse because it seems to be getting worse each day any help or advice much appriciated.

Well, I see I am not alone in this horrible dilemma. I had this lightheaded, shaky vision, dizzy, occasional nausea, on and off headaches(daily), just plain terrible feeling. This was in March through May of 2005. Well here it is 1-6-2008 and it came back 2-3 weeks before Christmas. Happy new year to me... Now I am going on my 4th week of this.

I don't know how to explain it but if anyone else feels like this too let me know... If I sit still and look at something it feels like my eyes are moving side to side and having a hard time trying to fix on what I want them to. It even feels like they go very, very slightly in and out of focus. SOMETIMES, if I look at something it gives the appearance that heat is rising in front of what I'm looking at, does this make any sense? This is what probably causes the nausea? Just typing this is aggrivating these symptoms so I take a break every minute or two. It's hard to explain all of this...

When I got this the first time I was pretty scared(I am now too, but this time I know what to expect). I went to 3 doctors who pretty much dismissed it all as an inner ear blockage, allergies, stress, sinus infection in which I was prescribed 2 antibiotics that did nothing... No doctor figured it out then, just give me this and that to try. I had my vision checked, it was normal though I found out I needed reading glasses, had my hearing checked...normal... It became normal back then to me to feel like this, and now that it's back again, I again think back as to what it feels like to be normal. Finally in 2005 it just faded away, I don't remember how, but it just went away. I really feel angry at times that I want it to just go away, and some days it's not as pronounced, but some days like Christmas eve, I felt pretty bad. It ruined that night for me. You can't enjoy yourself at all, and as for being at work.... Forget it, it's miserable. It makes me crabby and irritable. It's hard to concentrate felling this way.

I remember about a month ago I was driving to work on the highway, I was on the cell phone with my mother, when all of a sudden I felt very faint, as if the road in front of me narrowed and was squeezing me in, and I got the feeling like I was going to pass out, and came very close to it. I had to go into the breakdown lane and stop the car for fear of passing out and killing myself and my wife.

A week later I got the same feeling in my head I got in 2005 when I got the first bout of this thing. I'll try to explain that too. It felt like on the right side of my head above my ear and almost to the top of my head it's slightly like a tingling sensation inside, like a cold or cool tingling sensation, only for 5-8seconds. Then it is gone, it's like a warning sign that this was coming. The same feeling was in 2005 before I got this. I know migranes cause an aura, I have had migranes, I get the vision thing with the silvery aura, and looking at something I can't see but only half, then after that goes away the pain comes 20 minutes later. Now after this tingling, it comes a lot faster, and right before the headache i fell a little whoosy, and lightheaded.

I do have allergies, but I have had them since I was 14, I'm now 37, so I really don't think this is anything related to allergies, antihistamines don't help this feeling. Now, one thing I noticed in this wonderful return of this thing is, sometimes when I eat I feel worse. I have normal blood sugar levels because I went out and bought a blood glucose monitor I average 110-160 2 hours after a meal, 98-115 in the morning after fasting. I don't have high blood pressure, I bought one of those too, I had a reading of 140 over 81, but why not have any high readings... this feeling is making it go up with worrying!!! Otherwise I am normally 125-133 over 70-76. So this eating then feeling worse at times is wierd.

I sit and think of it being a tumor, brain disease, or something, and feel as if when I go to bed every night, will I wake up the next day??? Or am I just going to drop someplace??? I don't think that is good for my anxiety levels...

I am within a 90 day probation at a new job and have to wait until 1/23 to get my insurance going, that makes it worse. So for now I have used Excedrin for Migranes to help the headaches, but it contains caffeine(not good at bedtime, and sometimes makes the lightheadedness worse). I have taken Dramamine to help with the dizziness/nausea. The reason I take that is because one doctor prescribed me Antivert a few years back during the last episode, it's a vertigo medication which is the same as dramamine. Yes it helps, but makes you VERY drowsy... bad when you are at work.

So this is my story on this annoying, sometimes disabling feeling...

:(

Hi there,
i just wanted to say i'm experiencing the exact same thing. I was reading your explanation of your symptoms and i'm dealing with the exact same thing. I think unfortunately we're both suffering from severe anxiety. I was so scared because i'm also only 26 and it came on suddenly, out of nowhere. Apparently we're at the age when these things happen. I'll probably go see a doctor tomorrow to see if they can do something for this dizziness but i'm glad to know i'm not alone. I'm sorry you're suffering with this. I hope the foginess will go away. You may want to try relaxation techniques. That may help after a long term dose of them. Anyways keep me posted on what works and doesn't. Chances are i'll be needing to try them sooner than later.

Hi there,
i just wanted to say i'm experiencing the exact same thing. I was reading your explanation of your symptoms and i'm dealing with the exact same thing. I think unfortunately we're both suffering from severe anxiety. I was so scared because i'm also only 26 and it came on suddenly, out of nowhere. Apparently we're at the age when these things happen. I'll probably go see a doctor tomorrow to see if they can do something for this dizziness but i'm glad to know i'm not alone. I'm sorry you're suffering with this. I hope the foginess will go away. You may want to try relaxation techniques. That may help after a long term dose of them. Anyways keep me posted on what works and doesn't. Chances are i'll be needing to try them sooner than later.

I have since been eliminating caffeine completely from my diet, and it has seemed to help me a bit so far, the headaches have been reduced drastically.

I did buy the book "heal your headaches" last weekend. There for sure is a lot of good info in there. And the caffeine elimination also reduces the lightheadedness, and the feeling of your eyes "twitching". Try to relax a bit more too. I worry about too much at one time.

Hi,
I posted this on another thread but I saw another similar thread so putting my reply here as well.

If you have already gotten all the necessary tests done - MRI, CT, ENT check up etc and nothing comes up this is surely a case where an "imbalance" has occurred in the body and it needs to get cleared. The reason is stress.
I had this exact symptom for 5 months and I can assure you that it will go away. I did acupuncture, yoga, meditation, EFT and ayurvedic treatments. I am not sure which helped the most but I think it was a combination of all. Not thinking about it (I know this sounds nearly impossible) initially helped as well.
I spent a huge amount of time surfing health boards and making myself more anxious. Once I accepted that this is nothing severe but a symptom of "imbalance" (Docs here refer to it as depression, anxiety) the dizziness got better. So the first step is to assure yourself that this will go away.
Stress and worry makes this worse.
I totally empathize with those who get this dizzines because I know how frustrating it is. It is hard to explain it to folks around you and it felt like it would never go away. I could do things like work, drive etc but it felt so debilitating, draining and exhausting. Worrying and stressing about it triggered other symptoms and made it worse. I also have 2 small children and know how bad this can be. I have also heard a lot of people get this dizziness and make themselves worse thinking it is something life threatening. The first step is to stop this thinking.Hope this helps.

Hi Amber -

I also suffer from chronic lightheadedness but I don't think my case is as severe as yours. I have had many tests also that all came up negative. I just wanted to mention the VESTIBULAR DISORDERS ASSOCIATION in case you havent heard of it. They can recommend a doctor that deals with various vertigo disorders. (Check out their website www.vestibular.org/) I found an excellent doctor through them who put me through a battery of tests. IN my case it didn't help but my case is much less severe than yours. It might be worth a shot for you. Mine comes and goes and is just a slight feeling of light headedness or imbalance that is disturbing but not debilitating. But just like you I get very upset because all I want is to feel normal again and not have to concentrate on walking down the street without looking like I am drunk. It was interesting to hear you mention the reaction to light - I have noticed that I have a fairly strong reaction to lighting and it is hard for me to be in a room with flourescent lighting for very long. Right now I am experimenting with my diet and hoping that this is some sort of weird food allergy. Best of luck to you Amber!

Well this is my story. I started experiencing the symptoms many of you have described about 2-3 months ago and I am extremely frustrated with the whole situation. I started to experience this brain fog one day, thinking it would just go away after a few days. I felt like I was in a daze all the time and everyday activities required more effort than normal. I had trouble concentrating , remembering things, and planning. I am almost 18 and live a healthy lifestyle. I had blood work done and everything came up fine. I started to make myself feel even worse by stressing out about it, wondering if I would ever go back to normal. I get frequent headaches. I constantly feel lethargic and feel like I should be awake and enjoying a nice day instead of feeling tired all the time. I just want to go back to normal where I could think clearly and enjoy things as they were before. I have just seasonal allergies to pollen, ragweed, etc. My doctor keeps bringing up the issue of depression, and I can assure you I am not depressed. I just know how I used to feel and now I feel like my head is heavy and I just want it to go back to how it used to be. What has worked for anyone? How long did it last for? I want to stop worrying but I am afraid it will never go away. Any advice would be great.

Hi Amber,
I had been going thought almost the same as you for years, I have every test done that could be done and all looked good. None of the RX pain meds help not even migraine meds. But than I noticed one day that I was feeling good, no headache at all for a day and a half but for the life of me didn't know what I had did until the next week after I had been though an awful migraine that lasted all weekend that Midrin and Imatracs (spelling ?) couldn't help with. Out of desperation I hit the internet (again) and started looking out all kinds of headaches and found out all of mine sounded like Multiple Chemical Sensitivity, I had heard of this over a year ago but at the time time thought there is NO Way I have that. That Sunday I got rid of all the cleaners and air fresheners in my house and did use anything that had fragrances in it. By Monday morning I felt better than I had in over 2 years. The headaches were almost gone, the dizziness and nausea were gone, the fatigue, anxiety and brain fog had lifted.

Here are some of the symptoms of MCS
Headache
Fatigue
Dizziness
Nausea
Irritability
Confusion
Difficulty concentrating
Intolerance to heat or cold
Earache
Stuffy head or congestion
Itching
Sneezing
Sore throat
Memory problems
Breathing problems
Changes in heart rhythm
Chest pain
Muscle pain and/or stiffness
Bloating or gas
Diarrhea
Skin rash or hives
Mood changes

Now I'm not going to sit here and say you have MCS also I just wanted to tell my story just incase that sometime you haven't looked into. I suffered for many many years and have seen lots of Dr.'s and wasted thousands of dollars on test that all came back clear.
I found out 3 things that REALLY bother me was fabric softener (even unscented ones) and perfume and my DH's new car (the new car smell).