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Going on almost 2 years!
I have been suffering with the exact same symptoms that everyone has stated. After almost two years of dealing with this, my physio has determined the problem to be the levator scapula. This muscle in the neck connects to the rotator cup in the shoulder. When the levator scapula muscle becomes inflamed, the rotator cup pulls the muscle, which affects my C2, C3 vertebrae, in turn makes my head go "WONKIE". I am in the process of having this treated and is making a difference. I find my sleeping style is the root of this problem. I would sleep with my right arm up under my head pinching the nerve. This treatment is working for me, so I hope it works for someone else.
I am a physical therapist that frequently works with vestibular dysfunction and other pathologies causing vertigo/dizziness. I also have experience working with cervicogenic vertigo. It sounds likely that there are a few different diagnoses at work here in this thread. I will assume that you have been tested for BPPV and were either negative, or if positive, treated with cannalith re-positioning maneuvers (like Epley or Semont maneuvers).
For those of you who have been diagnosed with lingering vertigo following labyrinthitis, vestibular neuronitis, or some other unilateral vestibular hypo-function: did you complete (with good compliance) a VRT program utilizing progressive exercises for balance, occulomotor function, vestibular habituation, and VOR training? If not, then you may want to find a qualified therapist for this treatment. If so, then your symptoms may be the cause of some other pathology.
For those of you with neck pain/dysfunction and lingering non-spinning dizziness: you may have "cervicogenic vertigo". Cervicogenic vertigo comes from a mismatch between sensory information from the cervical spine and input from the visual and vestibular systems. It usually happens after trauma to the neck (such as whiplash) or with other cervical pathologies that cause marked neck weakness and reduced cervical proprioception. The resulting non-spinning dizziness after neck motion can often be confused with positional vertigo since when the head moves the neck does to, thus causing the dizziness. This is usually treated by addressing underlying cervical muscle tightness and segmental immobility, using exercises for cervical proprioceptive training, and progressive strength/endurance training of cervical flexors and extensors.
For those of you with a diagnosis of migraine associated dizziness: You should ask yourself if you have dizziness (lasting minutes to hours) associated with most if not all of the following migraine characteristics - headaches (unilateral and throbbing), light/sound sensitivity, auras, multiple headaches/dizzy spells provoked by specific food/beverages, and/or reduced symptoms with use of migraine medications. If these sound familiar, then use of migraine medications (such as abortive migraine meds, beta blockers, ca channel blockers, anti-seizure, or anti-anxiety), initiation of a migraine diet, and stress reduction techniques may be useful in addressing your dizziness.
There can be lots of other problems at work here such as Meniere's disease, mal de debarquement, perilymphatic fistula, or superior canal dehiscence syndrome, just to name a few. So know that there are still a plethora of other possible causes of your dizziness, and the above mentioned problem list should therefore not be thought of as exhaustive.
As always, consult your physician before beginning any new treatment or medication.
I hope this info helps.
-Steve Daillak, MPT
Don't know if this will help anyone here, but I found the answer to my vertigo, with similar symptoms to a few of you, so I'll pass it along.
I had almost constant vertigo for a few years. Had a thyroid that was slowly starting to go into hypothyroidism. Have a few partially herniated discs, one in my neck that would cause neck pain and issues down my arms at times if things were inflamed or tense. Had the cat scans, MRI's, neurologist examinations, ear specialists, allergists - nothing found that would explain this.
After a few years of this, I found out that I have Celiac Disease, and there is a very simple (not easy, but simple) way to eliminate symptoms for this disease: don't eat gluten (wheat, rye, or barley). That's it. There are no drugs at the moment, only the diet change. But without gluten? Vertigo COMPLETELY gone within a few weeks.
All the other issues - including the partially herniated discs - were all a result of this disease as well. If I eat have something now that has even touched gluten (called gluten cross contamination) - like a bun touching my hamburger - within 20 minutes I'm having trouble standing up because the vertigo is so bad again. It'll last for a week or two, slowly ebbing as long as I stick to my diet.
I went from not being able to get out of bed some days because the vertigo was so bad to being able to do cartwheels across the grass. It's really been shocking.
For anyone who thinks this could be an issue: Celiac Disease is an auto-immune disorder where our bodies attack our intestines if we eat gluten. There can also be a neurological component that is still only in the early stages of research, so it's usually missed. Celiacs start losing the ability to absorb nutrients from our food when the intestines are damaged like this, which also means that any system in our body (including the neurological one) can be affected. Some celiacs get stomach pain and gut issues as well, but more and more of us are showing up with no detectable gut symptoms and lots of other symptoms - like the vertigo I was having. Unfortunately, researchers are still trying to learn about this disease, so vertigo is currently not on the standard list of symptoms. However, many celiacs I know HAD this as a symptom.
Lots of other issues going on at the same time as the vertigo can be a clue that something is happening that is affecting the entire body, not just the brain or the ear, etc... Symptoms that other celiacs have reported (either alone, or in some combination): deteriorating joints and bones, constantly damaged soft tissue areas, excessive clumsiness, problems thinking and memory issues, vertigo, other auto-immune diseases cropping up, organs failing years before they should, numbness and tingling (look up gluten ataxia if this rings a bell), emotional control issues, stomach pain and gut issues, excessive weight OR low weight that doesn't seem to respond to diet or exercise, 'heavy' feeling to the limbs, sensory input being too...hmmm...high, I guess. Sounds too loud, lights too bright, tastes very bitter or sour. Not all of these are on the officially accepted lists, but again, a number of celiacs have reported these as issues that have disappeared on a Gluten free diet.
There's a nice list of symptoms on this site here:
The number of people who test positive for this disease has quadrupled in the last 50 years (using frozen blood samples from the 50's and modern tests, so it's not just the tests getting better). About 1/3 of people have the genes for this, and the disease is 'triggered' at some point in life, so you can be the first in your family to get it. Approximately 1 in 133 test positive currently, in random testing, performed by more than one research group. And the average time to be diagnosed, at least in the USA, is 10 years.
Going by symptoms I had that have disappeared completely after going gluten free, it took over 20 years for my diagnosis.
Obviously, these symptoms can be so diverse that it's really hard to say 'oh, this is celiac disease' without a test: blood panel. I'd research first before you get one, though. Newer tests have fewer false negatives but may have to be specifically requested. Gluten must still be consumed while taking the test or it is inaccurate. There is also something that studies are now indicating is out there as well: non-celiac gluten intolerance. There are no tests for this except dietary changes and symptom reaction, which it's a good idea to talk to a doc about.
Good luck, and truly hope that you find out the answer to your vertigo too!
Hello everyone. I have been looking for a forum to try and tell of my experience with vertigo and meniers disease and maybe help you with my experience. I do know that first just realizing you have a problem that is not a brain tumor, MS, etc. is a a step in the right direction. I do understand that the syptoms are so bad that every disease in the world comes to mind. Mine started at age 37 and I am now 54. I have had every test known, including surgery and genamiacin injections through the inner ear. I also spent a year in Vestibular rehab, trying to gain control of my balance again, live with the vomiting and "try" and live my life, hoping to fight the depression that come along for the ride. I have taken every medicine known and went through 33 Doctor visits before I was lucky enough to find the Best in the Country. I have gotten married during this time, had a Daughter and ran a business until I could no longer work. There are many things that trigger it and some as unusual as flourecent lighting in a Department store, lifting heavy objects or just looking up. I have also put up with the people who don't understand because I "look" fine on the outside. I have had my story in many papers, television interviews and so on. I am hoping someday to find someone to write a book on my experiences. After one interview with Floriday Today paper I had 125 phone calls from around the nation from people so happy just to talk to someone who could relate and not feel like "it's all in your mind". If you have any questions, please feel free to ask. I am NOT a Doctor, just a patient with probably the most experience with Vertigo/Meniers Disease in the Nation. I will respond to all emails and questions from my own experiences.. Please stay strong and do what's best for YOU to be comfortable and manage your life.
Hi, all.. I'm so sorry you all have felt so badly and I am going to assume you are much better and that is why you have not been back here. I have something kind of like what you are describing. I know about the boat and dizziness and nausea. I am on a boat at sea even when I sit or half lie down, I can't actually get supine any more, but I fake pretty well. I also know about the disc problems, which sounds a bit suspicious to me. Strange that nearly every single one of us has that. I also have the intense pulling to one side like John Wayne caught in an Enterprise tractor beam. And I have the Kathryn Hepburn head shake and strange voice. The top of my scalp feels like the Alien is going to pop out any minute and there are small snakes in there with him that are dancing around like crazy. My left ear turns bright red ever so often and the redness spreads down my left side to my chest and I get a mild, small rash like little red polka dots. The side of my face feels like someone dipped it in acid. Hot acid.Then lit the acid. I put ice packs on it to sooth and it will usually go away in about thirty minutes to a couple of hours. Usually it will not come back for twenty-four to thirty-six hours, so that's lucky, though sometimes it will come back a few times a day. I have tried to track these things to foods, drinks, things I inhale without holding, laundry detergent, mood, health, other environmental stimuli, time of day, weather, climate, pressure (barometric), if I have matching socks, I can find zilch. I have actually fallen a couple of times by losing my balance, thank God not in public. Once I whacked my coccyx good, landed right on it hard (but missed my head, at least). Couldn't sit for a week. Reminded me of my childhood. And the other time I was holding a chopping knife mincing some garlic cloves, minding my own beeswax, felt like I was gently pushed off the stool, spun a little then pushed,though not violently, my legs tangled and I went down really hard and hit my head on the stove, bounced off and hit the ref door, then the marble floor. The knife landed about six inches from me. I remember consciously thinking to myself as I went down to "get rid of that knife!" I have also tried to walk with my walker in the house and been gently pushed into walls at the last minute, nothing severe, just catches me up and sways me before I can regain my place with my feet. I have severe insomnia, central apnea from methadone, osteopenia, high blood pressure, narcolepsy, cataplexy and RSD plus really bad RLS. I had a weird stroke, in my colon, a few years ago, too. Everything I have is weird. Not one thing normal. I thought for a while that it was a new medical rule to put the word 'atypical' in front of every Dx. I have been on really strong narcotics for a few years now. However, I have always considered myself very healthy.What does this say about me? I only had a minor accident that began all this about nine years ago. Isn't that ridiculous? You want to know the horrible thing I did? I broke one of my baby toes. That's it. Whole story. I did it while walking. Now you may call Ripley's. And I swear to you that is what happened. Walking along, broken toe, flat on my back in a crib size hospital bed. I have now officially been in the hospital over thirty percent of the last three years of my life and several times before that. I have had to go to a long term care facility that is located on Rod Serling Rd....look! there's the signpost up ahead. I truly entered the Twilight Zone at that place and had to stay over three weeks. I have been in a hospital bed at home next to my wheelchair for a year and a half now on O2 24/7 at 2.5 - yeah, go ahead and do that math. BORING. My docs had decided I was having seizures for a few months, then I had dystonia for a year and now they have decided it's an anxiety reaction (we used to call them conversion reactions, though I never actually saw anyone convert). It must be true though. Because as soon as this last doc told me that I felt quite a lot of anxiety. At least I think that was anxiety... it was negative, I can tell you that. And I've got to admit a lot of you seem to be right about our healthcare system, it does appear that docs do not want to be bothered unless you are a cash cow. Did you know that I read the other day that each doc books an average of forty patients a day? They obviously must need the money desperately, 'cause I cannot for the life of me picture them taking the chance of not having enough time to properly care for everyone if most of that forty showed up one day. Maybe that's why it seems like if they can't immediately do a textbook Dx on you, it's the old 'she needs a psychiatrist' routine. So... I'm off to still another neurologist, my third. I have had cardiologists, urologists... well. all the gists and ology's and octors, as long as they don't begin with a Ps. Sorry. I am feeling a bit peeved today. My rocking and weaving is 24/7 for the last eight months and my head is very painful, sometimes more so than my back. I am putting curses on it constantly so it won't get cute and try to allow RSD in there, too. Some really bad pains have started on the outside of my thighs now just intermittently, but for only a couple of hours at a time. I put my tens unit on kill and it feels better after a while. Think I will mention that to the docs? You bet your sweet bippy I won't. I will probably start doing a lot of clamming, you know? Do any of you pretty please have anything like this? Oops, take that back. I really don't want anyone to have anything like this, but... if you do. I would really like to talk with you. I am not looking forward to the next doc's visit. I have given up. I have no idea why they picked anxiety for me to have, I'm now much too depressed to feel anxious. You think that is a healing maneuver? Blah! Let's just spit it out and move onward and upward. How are all you people doing now? Wish I knew. Maybe someone will report in soon and give spectacular news. Meanwhile, remember, laughter is the best medicine! (It really is..) xoxoxo
I wish this thread wasn't so old, but hopefully my answer will help someone. My story started back in May of 2011. I had just started a new job and I have four children who are 5 and under. I exercise regularly and although I have a large frame, I am really healthy. In February of 2011, I was in a bad accident, without noticeably injuries, and I found out my marriage was in trouble in March. I also had just come off winning a very large lawsuit, but the other party declared they were judgement proof, so I essentially lost. This led to many financial problems. Don't worry, this is all part of the story and not a "boo-hoo me" story.
In May of this year, I started to feel tired and my blood pressure was elevated to 150/90. My GP prescribed lexapro without any noticeable change for the better, but it definately caused other problems. Then she prescribed Wellbutrin, but I turned into a zombie and had sexual side effects. The anti-depressants were not the answer and I knew all along I wasn't depressed. Then, I started to get vertigo and constant headaches. Migraines were always part of my life, but never at such regular intervals. Therefore, I went to a cardiologist, psychiatrist, endocrinologist, neck and spine specialist, physical therapist, massage therapists, hypontherapists, sleep specialist and scheduled a visit with a neurologist. The symptoms continued to get worse as my BP remained high, fits of exhastion were constant irregardless of adding extra sleep to my schedule and I was constantly dizzy with a dreamy/drunk/slow feeling throughoput the entire day. To top it all off, I started having these episodes of dizziness followed by extreme exhaustion. All along, I had to defend mysefl against all of my critics....which was pretty much everyone but my wife. They all thought I was just Psychologically disturbed!
This past weekend, I was playing with my son and felt a wave, much like I would imagine taking 40 Vicodin would feel like, and I fell to the floor with what my wife thought was a seizure. I do not remember the following three hours and supposedly I was combative, angry, speaking Spanish and suffering from extreme mood swings. I was taken to the ER and they prescrivbed Keppra for Seizures after an MRI and CT scan revealed nothing. I went home and slept the rest of the day and throughout the night. The next morning I awoke and felt a little better, but that may have just been hope, because later that morning I had another "episode. Once again, an ambulance took me to the ER where I receieved an MRA, MRV, sPINALT tAP, eeg and was bombarded with anti-virals and anti-biotics. Nothing! The episodes continued and I was transferred to Johns Hopkins University Hospital in Baltimore. 10! Count them....10 neurologists were in my room askintg me questions.
After much research, and blind luck, one of the docotrso remembered a colleague that had studied MAV, aka Migraine Asscoiated Vertigo. It is a migraine so bad that it sometimes doesn't hurt and presents as seizures if bad enough. They prescribed Amitriptyline (sp?) or Elavil, and for the past week, I have seen steady imrpovement. My energuy is back, my migrianes are gone, my vertigo has all but subsided and that drunk/dizzy feeling is tartibng to go away. be warned, this stuff is funky and for the first 2-3 weeks it is supposed to be a trial of wits to stay on. It makes you very tired at first and can have other side effects, which I have not had, butit seems to be working.
After all ofthat, my best advice is to be tyour own greatest advocate and don't let it come to what I had to deal with. In reality though, that elevated symptom is what led me to my diagnosis and getting my life back. Also, you will have to go on the Migraine diet and that means giving up caffeien, alcohol, and many other various things. Its worth it though. Good luck to you all and I hope this may help one person, but don't go telling your doc that you have MAV, just offer it up as a suggestion when all other avenues have been exghausted
Hi guys ,just became a member to share my experience with what in my opinion is your problem.So basically I had the same symptoms as you have explained ,dizziness ,stiff neck ,headache ..and so on.The only difference is that I don't believe in mainstream medicine.Anyway I don't like writing ,but decided to tell you how i got rid of my problem in just a couple of days and give you a chance to get hold of your life .
Sternocleidomastoid -that is the muscle that starts behind your ears the other end is connected to the clavicle.All the problems you've got comes from Trigger points in this muscle .So if you do a google search on Sternocleidomastoid + trigger point you will find where the muscle exactly is ,where the trigger points are and how to treat them .A good book on trigger points and self treatment is :The trigger point therapy workbook - by Claire Davies .Now the ball is in your court ,do a bit of research ,try a few things and if after that you still have questions which you think i could have the answer for contact me.
Just to say I don't have any affiliations with the author of the book ,I'm not selling anything,and i wrote in this forum just because i know how frustrating is to not be able to have full control on Your own body.Please let me know if you had any results .Good luck guys ,hope i helped
I have had several issues in May 2011. Started with bad dizziness which I attributed to sinus issues. Went to see my old doc, she said "fluid in inner ear" and gave me antibiotics. Symptoms slowed down for a while and then came back. This has progressed to an every day issue, some days better than others. MRI of brain, cervical MRI, scope of sinuses, CT scan of sinuses, blood work, potassium and other levels all normal except for a severely deviated septum with the ENT said "if it doesn't bother you, don't fix it". Tested at Mayo with extensive dizziness and balance testing. No issues there either. Mayo doc gave me a Kenalog shot for allergies. Too care of my allergies fine, but nothing else.
All tests by the Mayo Clinic. Waiting to see a neurologist. Can't get in for several months.
PT has given me neck and back strengthening exercises. I get bad headaches that seem to come from my left and right shoulders/neck. Dizziness does not always have a headache, but headache most always has dizziness. If I hit the health club and do upper body work, I feel better for a least a day, but not perfect. Vision feels off, and sometimes the screen on my computer just feels too bright (I work on a computer 10 hours a day). OTC meds do not help. The symptoms can go away as spontaneously has they appear. Always when I am dizzy my upper back has an aching/burning. Tried a chiropractor. She adjusted my neck. No help. Went back to her. She adjusted again and then did something on my back for my muscles that made me bruised for a week. Have not gone back.
Symptoms come and go with no rhyme or reason. I can feel functional and then 5 minutes later my head is swimming, like it's too heavy for my neck. Getting up from my yoga poses makes me very dizzy. I can be sitting at my desk and get a wave of "head swim". Also riding in the car at night can trigger this. If I drive I am OK. No vertigo diagnosed. No nystagmus. Thought maybe it was menopause. Went off my birth control to let things roll. That made me feel worse because now I have hot flashes 10 times a night. I am going back on the pill and they will have to pry them out of my cold dead hands.
I am leaning towards a muscular issue maybe? Migraines have been suggested, but this dizziness is a constant issue, and my headaches can be in different areas of my head. When I have my headaches with dizziness, however, the pressure in the front of my face is very noticeable (again which is why I thought sinuses) and my eyes feel like they are "spinning".
I am hoping that one day I wake up and feel normal again. Most mornings I wake up feeling like its going to be a good day. Symptoms will most always start later on. Yes, I did a food diary. Nothing stood out.
Rather than go on a detailed blog post about my personal life, I want to ask everyone here to please check their Parathyriod horomone is within range.
Here are key (unique) symptoms I can say about my condition (going on 2 yrs):
-feel great when wake up, gets progressively worse minutes later
-stretching neck and "cracking" or "popping" neck vertebraes out of place produces temporary relief that lasts minutes
-muscle twitching (slight, all over body)
-dizziness comes and goes, for the most part my body has compensated for dizziness fits so they aren't as bad anymore
-when dizzy neck _does NOT_ hurt, and when neck hurts am _NOT_ dizzy (the two symptoms are mutually exclusive)
-my parathyriod hormone is slightly out of range as indicated by a test, have retested it and its fallen within range but at the highest possible score.
Wow. I didn't know that others were having this problem. Mine hasn't been painful but more of an emotional drag. I've had dizziness and problems concentrating, problems processing information for about two years. I wake up and because I'm dizzy, it feels like I'm tired. Then I end up not being able to do anything. In meetings I loose track of what people are talking about. I'm an engineer and when it get's bad, I can't do basic math. Hopefully it doesn't get me fired. It almost feels like I'm drunk but I don't have problems with balance. If I'm playing soccer, my dizziness increases and I can't direct the ball where I want it to go. My speach is getting bad. I constantly stumble over my words and have a hard time making a point in casual conversation. I think people think that I am stupid or loosing my mind... The doctor that I went to gave me saint johns wart. I tried an antidepressant...didn't work just made my sex life horrible.
Anyone have any results with this yet?
Hi, Im a 17 year old student and i have had this problem since i was 7. i remember always feeling scared due to the dizzyness. i had the feeling as if i were falling down(continous as if jumping from a plane). i too have had all the medical checks required since my father is a doctor. i too have constant dizzyness like alias but instead it also occurs during my sleep. this had led me to having resit most of my exams. whenever i sit down to eat watch TV or do homework i have been dizzy. a tablet known as stemetil really helps with the dizzyness. but be cautious that this does cause drowsyness although after u wake up the dizzyness doesnt come back. also there is a tablet called serc which may help but results will only show atleast 2 weeks later as the body needs to adjust with the tablets. if anyone else has any suggestions please tell me. im at the point where i desperately need help.
Thank you so much and i look forward to your replys.
Two things here. One is look up adrenal gland issues. go to an endocrinologist it is a HUGE factor in bruxism. Symptoms are dizziness headaches etc. Your hormoones may be out of balance (cortisol, etc).
Second..when you brux or grind you are putting an undeniable amount of pressure on your jaw joint, which is connected to your cranium and your ear pathways, thus causing headaches, migraines dizziness extreme pain etc. SEE a Neuromuscular dentist. YOu will be floored at what you learn..and will change your life if this is the problem. Your bite being off just a little will cause this. Third. nobody whi bruxes or grinds should be wearing a mouthguard at night, as your teeth indirectly connect through the guard. It might stop wearing your teeth down, but will not stop the dizziness or pain b/c there's still contact. Get an NTI appliance. Not expensive-see a dentist in your area for this, and provides alot of relief while you get to the bottom of why you clench and grind-and thatbwill be the only reason to solve it all.
BTW-clenching can cause your vertebrae C3 C4 issues including disc problems. Acually quite common.
Hope you find relief!
Saw my Mayo Clinic neurologist yesterday after 5 months of waiting for my appointment. Basically kicked me to the curb with a recommendation for Neurontin to stop the 'cycle'. Says there is nothing serious going on, figures I had a virus that did some damage to my inner ear and my brain has not adjusted to my new 'norm'. I passed all his strength, balance and vertigo tests. MRI is clean except for a few non-specific white spots.
My next thought is having my hormone levels tested as one last shot. I know I have low estrogen as when I go off my BC pills, I have all kinds of hot flashes and headaches. I am 48, so I am sure I am at the very least pre menopausal. Also going to the same Naturopath for food allergy testing. I am allergic to everything else in the world, so I guess I should check which foods I should be avoiding also.
After suffering from many symptoms described in this thread every day for the last 4 years, I woke up this morning and thought id do a quick google and found this thread.
It started for me one afternoon, i felt a little dizzy, as if id gotten up to fast and was lightheaded, an odd feeling though, I was just about to leave for work so i took a couple of pain pills and drove off, within about 20 minutes I couldnt even drive in a straight line, I was so dizzy and felt like I was going to pass out.
I went home to bed, woke up the next day and still wasnt right. This initial 'attack' took about 2 days to settle down, ever since I have not been right. Everyday I wake up feeling almost hungover. Its hard to describe, more a tired sensation around my eyes and slight dizziness. If I was to spin around in a circle 3 times right now id be dizzy for hours, then it would numb down to what I am feeling now ( when I wake up ). Some days are worse than others.
I have seen numorous gp's, a neurologist, eyes tested, various other tests, ive had a CT scan. I am thinking of seeing an ENT specialist, as I have noticed my left ear sometimes (daily) feels like its got water in it, my hearing/voice sounds funny in my ear as if its water logged. When I saw an ear specialist he meantioned when I was on my left side my eyes were twitching ( was wearing some goggles with a camera in them). He told me to sleep on my right side and gave me some excersises to do, none really helped.
So thats where Im at right now, just thought id share my experience and am yet to find my cure. But if I do I will report back.
I have had this ever since I stopped Topamax. Have you ever been on this drug? There is a lot of information on www.aboutlawsuits.com/topamax-339/ I couldn't believe how many of the same symptoms everyone has, including myself. Just thought I'd see if maybe this is the cause. Unfortunately it doesn't seem that it gets better and it doesn't seem to show up on any tests. I had an MRI, MRA , EKG ,CT , and a ton of bloodwork. Nothing. Good luck.
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