Hi,

your symptoms sound just like mine. I have had them for 2 years now. Always groggy and a bit dizzy. Feel slightly better when I sleep well and far worse after a rough night's sleep. Also have facial tenderness and pain. I have seen chiro, ent and neurologists, homeopaths and gp's with no success. It's very frustrating. There used to be days where I felt ok, but not pretty much every day is the same. It's not so bad that I can't work, but it does stop me from enjoying my life as I did before. I also have had nocturia symptoms (frequent night time urination) in conjunction with this dizziness, so that disturbs my sleep and makes the headaches worse. I'll let you know if I make any great discoveries!

Hi
it might be worth getting checked out for pots, postural orthostatic tachycardia syndrome or other autonomic nervous system dysfunction.

The main diagnostic of this syndrome is an increased heart rate of over 40 beats per minute upon standing after lying.
Needing to urinate at night, dizzyness, excessive fatigue, migraines, poor memory and neck pain, dry eyes are all part of this syndrome.

Pots is not a well known condition amongst the medical profession and your gp may never have heard of it and will need to refer you to a specialist or at least research it themselves.

Given your symptoms I think you should check this out, I have pots and know how disabling it is. Check out these websites as well for lots more info and really good forum
www.Potsplace.Com
www.Dinet.Org

good luck and I hope this helps

catherine

Hi guys, it’s crap that there are other people out there that have the same ongoing symptoms, but it gives me hope because it’s not just me.

It’s been 6 months since my original post and a number of people asked to be kept up to date on how things were going. I only have a little to report but it’s worth a post.

Quick recap - I suffer from constant (meaning every minute of every single day) grogginess similar to being badly hung-over or having a head cold/ flu. I’m coming up to year 13. I was 18 when it started. Other symptoms are fatigue, headaches, brainfog, terrible concentration and memory, sore tired eyes, and tense neck and shoulders. Sleep, more than any other thing, seems to change the intensity of the grogginess, but not even close to the point where it goes away.

Since my initial post I finished up a year of being on a variety of anti-anxiety medication. Nothing even made a dent on the grogginess, so my p doc concluded that the anxiety is being caused by the grogginess and not the other way round. He also now admits that he has never treated someone who has had constant grogginess /dizziness before (and he must be pushing 60) and that with typical anxiety disorders, the dizziness comes and goes.

Anyway, I also tried out an ophthalmologist (negative), tested for lupus which apparently mirrors anxiety orders and is therefore often missed (negative), went to another neurologist (negative), saw another sleep doctor (negative), and had my sinuses x-rayed (yep .. Negative).

Useless!! …… except …... I had an interesting chat with the sleep doctor, who suggested a theory that it might be a neurotransmitter problem in some part of the brain (hippocampus for example) that might currently be beyond medical science’s ability to diagnose and treat. Although this was disappointing to hear, it was also very refreshing for a medical doctor to admit that the medical world doesn’t know everything and that these symptoms could stem from some other yet ‘unknown’ problem or disorder. Hmmmmm ...

One last thing. I’ve recently been looking into breathing pattern disorders, seeing as this constant grogginess feels like my brain’s being suffocated by not getting enough of something (??). Unfortunately there’s not much strong medical stuff behind breathing pattern disorders, and it’s all a bit touchy-feely, but what have I got to lose. Anyway, this website provides you with a start, and an evaluation quiz for anyone that might be interested. Www.Oxygenesis.Org

thankyou so much to those who posted (and left messages), and please please continue to do so. As we all are I guess, I am so desperate to not feel like this anymore, and hope is rapidly dwindling. Anyway, I promise to post here if I figure anything out.


7ducks

Hi guys, anyone suffering from constant headaches and/or dizziness should see the main thread here:

http://ehealthforum.Com/health/topic39333. Html

cheers,
7ducks

After 6 weeks of constant dizziness, nausea and a hospital stay, i'm no closer to an answer on my constant dizzness either. I've had mris, mras, cts, blood tests, been to my gp, ent and my eye doctor with no answer.

Just knowing that i'm not the only other one out there with these symptoms, is wonderful (though I wish there were no one, including me). So many of you have described my symptoms to a tee. Mine started gradually and then got worse. I feel the same hungover/flu-like feelings in my head as many of you. I can't watch tv, read my emails or scroll on a computer, read, go to a store and isle shop without the dizziness and nausea.

If it is any help to you out there, my stress level started going up about the same time my symptoms appeared. Because of my personal living situation, i'm constantly stressed and truly believe this has an impact on what's happening. Can you relate your symptoms to stress also? Just knowing that one can be dizzy for 12 years stresses me out more.

I wish each one of you health and happy thoughts and through this site, perhaps we will find an answer.

Hi, my name is Jackson and I just turned 16. I know your probably like what is this kid talking in this forum for. You just seem like you may know whats wrong with me. About 6 weeks ago I started to feel slightly dizzy. It wasnt major but annoying. A week after that, I was so miserable, crying and doing nothing but sitting in bed for three days. I had a Blood test, CT Scan, MRI and it was all fine. I started to feel better about a week later almost to the point of feeling normal. But then it came back. The doctors thought I had Vestibular Neuritis, so for the last few weeks Ive been going to Rehabilitation exercises. I feel a little better but not close to normal. I dont have much energy, I dont feel like doing the things I usually love to do, Its hard to focus, I dont have vision or hearing change, no headaches, and if I dont eat I feel worse, and my eyes sometimes itch. Anyway of course its scarin me, im 16 and by the looks of it it doesnt sound to good if I have the same thing as some of you. If anyone knows anything else I can do or how long this will last please let me know.

thanks, Jackson

I also just wanted to say I feel like im in a dream all day, not sure whether Im completly there. and I seem to stare alot at things and hardly realize it and I blackout alot more often when I get up from sitting down then I used too.

thanks, Jackson

I've been dizzy with a general sick feeling for 2 months now. I feel hung over all the time, though my balance is fine.
It seems like neurological afflictions like this are not uncommon and people experience 'dizzyness' for months.
I've had EVERY major test done, and thus far nobody can tell me anything with certainty. The nueorologist im seeing thinks its related to migraines and has given me medication that makes me feel even more stoned...
I don't think he's on the right track at all.
My advice is to hang in there.

hi guys, my name is Tina, I would like to underline that for 5 years I have suffered from constant grogginess, i often feel de-energized, and feel heavy legged. I often feel unstable with a need to sit down to feel more better. My sleep patterns vary, some mornings I will wake up feeling good, other mornings I will feel light-headed, and gradually during the day my head feels like a tonne. I have had periods where I feel nausea, although I do suffer from severe migraine attacks, where I will experience halos, and vertigo, but this occurs twice in a year, other times I will just get headaches. I have seen a GP constantly, I had blood tests, thyroid tests, MRI, and I also visited a neurologist who claims It's an anxiety related stroke depression poblem. I do have problems with anxiety, but even when all is well, these problems persist making me feel constantly tired, and fed up, and it has changed my social behaviour, making me feel more isolated, and it scares me to think no one can help.
I have recently visited a Chinede Herbal In whom have confermed I am unbalanced, and my energy channels are blocked, I was advised to have acuppunture, I've only had one session, accompanied by herbal medication, but to what extent will this help I really dont know. If there is someone out there please help us its so difficult to live well, and we are desperate for a solution, please help we only need one person whom can really be a sustain to us, and guys lets help eachother.

Hey guys I feel the same way and am having the same symptoms as all of you! I have vertigo when I lay down, heart palpatations, feeling of being unbalanced, upper back pain, heavy headed, lump in my throat on occasion...just to name some. I have been to many doctors including; neurologist, ENT specialist, chiro, chiro neurologist, massage therapist and have had many tests done (MRI-head and spine, blood work, BEAR tests, hearing tests, EKG). Everything came back fine. Nobody has an answer for me. Doctors have given me prescriptions (nose spray, paxil-for anxiety, muscle relaxers, iodine-for thyroid, but I am very sensitive to them and have had horrible reactions. Besides I would rather have a diagnosis rather than just a medicine to basically "shut me up and send me on my way."

I hope there is someone out there who can guide us in the correct direction. I am constantly doing research and came across an article today that said I (we) may be deficient in magnesium. I am HOPING this is the case and am willing to give it a try.

I will check back and let you know if this works!

All your symptoms sounded like mine. I went to the Dr. and she said I had fluid in my ears due to severe allergies. I didn't even know that I had allergies but could that be your problem? Since taking medicine I've gotten a little better.

Hello 7ducks,

I have tried to post this on all of your posts, hoping to somehow contact you. I tried to send you a private message, so I don't know if you got it. Send me a private one if you do. Here is your help www.VSofB.com. There are only three specialists in North America who deal with this syndrome, so you must talk to one of them. I had all the same symptoms and have found the cure, after exhaustive research. The anxiety you get is caused by the fight or flight reflex, caused by your eyes. It is called "vertical heterophoria syndrome" and once diagnosed, is easily fixed. Only a specialist knows what to look for. The medical community, as a whole, is quite dysfunctional. That is why they have not realized what is actually going on and connected the obvious dots.

For anyone with symptoms of feeling dizzy, fatigued, nauseous, etc. , especially where the dizziness gets worse when you stand up, please check out this short video made by the Mayo Clinic. (it doesn't work with MACS) It describes a condition called Postural Orthostatic Tachycardia Syndrome - POTS.
http://www.medicaledge.org/2006june-3.html

I have dizziness, fatigue, headaches,heavy feeling in eyes, brain fog, slurred speech, day sewats, sensitive to loud nosise, irritable, etc,etc,etc,.It is very frustrating because I am a health nut. I eat perfectly including the elimination of gluten, casien, and sugar (except fruit), from diet. I work out regularly. I live a clean lifestyle meaning no alcohol, do not smoke, and no other illegal drugs. I have had everything checked including thyroid, adrenal hormones, testosterone, vitamin a, b12, folate. All in range and in fact all optimal. I have had a sleep study which ruled out sleep apnea. MRI showed nothing. Working is painful not physcially but mentally. I know how many of you all feel, and I wish you all the best of luck in feeling better. Its just the way life is, way too many flaws that can go wrong in the human body.

Have you lot tried migraine meds? Most people think "migraine = headache" which is WRONG, very wrong. You can in fact have CONSTANT dizziness (no spells or attacks whatsoever), without ever having a headache, and it could still be migraines. On the other side, you can have pretty much any kind of vertigo or dizziness, including (BADLY in my case) visual vertigo, i.e. feeling motion sick from watching ANY motion. I do mean ANY, I can't even WALK without feeling ill.

Here's a forum about MAV (Migraine Associated Vertigo): http://www.mvertigo.org/ (seems to be down right now, hopefully temporarily!)
More info about MAV: http://www.emedicine.com/ent/topic727.htm

Now, there are misconceptions about MAV, too. Here are a few quick facts:
* You can have spells/attacks, with true vertigo, and/or *constant* dizziness for months or YEARS. Some pages only talk about shorter attacks (hours to at most days), and only true spinning vertigo, which is not the case.
* You do NOT need to have headaches to qualify (migraine is a neurological disease; blood vessel problems cause the symptoms, and headache is only ONE symptom). In other words, if you're having undiagnosed dizziness, PLEASE check out migraines. I was very sceptical at first but now, after taking to diagnosed people and an expert on the subject, I'm 99% sure MAV is what I have.

If you've ruled out most other things, please look into MAV - it's becoming increasingly more "popular" as a diagnosis as doctors are learning about it.
Best docs to see would (in order) be a neuro-otologist, or a neurologist followed by ENTs, I'd think. Neuro-otologists are the best in this area, for sure.

Regular migraine medicines are used (it's after all a regular migraine, despite what people think about migraines).
Pizotifen, verapamil, topamax, depakote are a few examples of prophylactic drugs (= preventive meds).

In any case, good luck! I've had this crap for 8 months and I can't imagine having anything like this for 12 years!

Hi everyone. This is my story. I have had constant dizziness for 14 years now. It started when I was only 15 and now at 29, I have not had a dizziness-free SECOND, in all these years. You now that feeling that one feels after leaving a boat? I feel like that all the time. My head in the inside swaying back and forth, or side to side. I am always tired, my eyes feel heavy and rough in the inside, like achy. Lights bother me a lot. Some times the same light may seem whiter and some times more yellowish. My head feels like if there was not enough blood going in. Suddenly I suffer from skipped heartbeats called premature heartbeats. My cardiologists say that its from the stress. And the thing is that from being dizzy all the time, I am always stressed and anxious. My concentration is horrible, I sometimes feel life I am loosing my mind. I feel very frustrated. I have been to the best hospitals, have done trillions of tests. But I think that the most frustrating thing of all, is that my family, friends etc. dont really believe me as all tests came back negative. My whole life changed. I used to dance ballet, but who can do piruets dizzy. I feel that i have had this my whole life. I went through college like this, even became pregnant and had a child, like this. I pretty much have accepted that I will be like this for the rest of my life, but then there are days where I cant take it anymore.

That sounds a LOT like MAV to me (see my post above, although MAV has MANY faces), and if it is, there certainly is both hope and treatments! In fact, if you find the right doc, there'll probably be a treatment no matter what's wrong with you.

Have you seen a neuro-otologist? If not, that must be your next step. Any other doctor, including ENTs and neurologists, are NOT enough specialized in dizziness to help you out properly!
If you HAVE seen one, and still don't have a diagnosis... See another. They should be able to figure it out without too much problem, so don't give up!

Still, if you want more active support (on this topic) than you'll find here, try dizzytimes (google it). Not sure if saying that is allowed here, but it's such a small niche that I think it should be fine.

And has MAV worked for you? What was the process you went through? Actually, this site is quite helpful and a number of people are getting real help, not just the positive reinforcement. I have had everything Jaclyn is describing and no one could help, just as she had mentioned. The only one's that did, are at the site I had posted on my previous replies. That may help you also. Oh yeah, it stopped the headaches/migranes immediately.

Lognum... can you please tell me where the doctors that treat VHS are located? I have only been able to find the one in Michigan. Do you know if there is one at Mayo? I have been dizzy for almost two years and have been to regular docs., internal medicine, optometrist, ophthalmologist, dizziness therapist, ENT, allergist, neurologist and neurosurgeon. I have all the symptoms and have had motion sickness since birth. I would really like to know how to go about seeing one of the Doctors that treat VHS. Thanks for any help you can offer! 2Dizzy2Drive.