Dizziness & Vertigo Support Group
Dizziness is the sensation of instability. Vertigo refers to dizziness with a sensation of motion. Vertigo is more likely than other types of dizziness to be associated with nausea, vomiting, or double vision, to occur even when lying down, and to feel better with the eyes closed. If you are a frequent sufferer of dizziness or vertigo, join the group and find support.
hotdogdog
Hi. I have had vertigo every day for almost two years now. I did not even know that dizziness came in two types when I went to the doctor, then. Now, I know too well, but don't know what to do about it.
Everything is still a possibility, unfortunately. Doctors have given me no specific diagnosis. I'm in my mid-40s.
Definitely something wrong on the left side, left ear area. Tinnitus and the oddest of feelings -- "headache" is not accurate, nor is "pressure." I wonder if enough blood is getting to where it's supposed to. I have stopped clenching my jaw and chewing on pens and stuff. That helped a lot, but did not fix everything. Was hoping it was TMJ-related, but not sure.
I wonder if it has to do with the dental fillings I had replaced, or the crown I had put in place two years ago.
It never feels like the swaying & spinning is going away, but it does feel less bad some days. I walked to Starbucks last month, and I had no feeling of it at all, which was like a tiny gift from the gods. Then it got really bad again over the next couple of weeks. Stores and grocery trips are the bane of my existence. The aisles are soooo confusing and the floors feel "lumpy" and uneven though I know they're not. It's just me.
What bothers me most now is forgetfulness. I can't remember the names of world-famous celebs. I drive through places I've been to hundreds of times and half my brain says, "Where are we? I think we're lost." I miss exit ramps and get lost. I broke down crying last month in the car wondering what my future will become. And as far as work, I'm a web programmer who suddenly cannot tackle the complexity of logical projects. I hit the wrong keys on my computer all the time. It mostly happens when I get this annoying "numbness" creeping along the top left side of my head.
So, is that an ear problem?
I also get "parasthesia" for a few days every couple of months -- like pinpricks and tingling in random places -- and muscle twitches. It goes away after a couple of days, usually. I was afraid it was multiple sclerosis, or Lyme disease, or maybe cleaning chemical poisoning. All tests negative. I'm going to just pretend it's anxiety induced. This guessing game is maddening.
I tried changing my diet (always good to do) -- avoiding all aspartame, MSG, alcohol, caffeine + more veggies, less meat. Not really any diff with the vertigo, but my gut feels a tad better.
Doing the Eply head adjustments for the ear crystals has not really done anything.
I don't do well with pills. My medical record must indicate that I have anxiety and may be bipolar. The doctors look at the computer, then conclude that I need seratonin drugs and referrals for psychiatrists. (Those pills make me totally insane! I can't believe people do well on them. No thanks.) And the antihistamines and valium-type things just put me to sleep. I sleep all of the time without the pills. Not helpful.
I have given up on the professionals for the time being. Some of what they say is legit, but much does not apply. Was told by the audiologist, "It's not your ears, it's your brain." Was told by the neurologist, "It's you ears, no sign of neurological damage." I was told by the ENT, "your nerves are shot and you have migraines from any type of movement which causes vertigo." He literally prescribed yoga and psychiatry. That's nice, but FU and your 5-minute misdiagnosis. They've suggested it was psychosomatic. Ugh.
Anyway, I'm searching and hoping everyday to come across a bit of cure from any one of you.
Not sure what's real and what isn't anymore. The doctors think I'm nuts, and my reply is, "Of course I'm having anxiety! My brain feels like a snow globe -- all shook up and thrown out of an airplane."
As long as I know I'm not going to die anytime soon, I can keep the panic attacks at bay, and my visits to the doctor to a minimum. I wish for the best and try not to put myself in any situation where I'll be overwhelmed.j
This is too long, I know, but thanks for reading. I welcome any response or suggestions.
Everything is still a possibility, unfortunately. Doctors have given me no specific diagnosis. I'm in my mid-40s.
Definitely something wrong on the left side, left ear area. Tinnitus and the oddest of feelings -- "headache" is not accurate, nor is "pressure." I wonder if enough blood is getting to where it's supposed to. I have stopped clenching my jaw and chewing on pens and stuff. That helped a lot, but did not fix everything. Was hoping it was TMJ-related, but not sure.
I wonder if it has to do with the dental fillings I had replaced, or the crown I had put in place two years ago.
It never feels like the swaying & spinning is going away, but it does feel less bad some days. I walked to Starbucks last month, and I had no feeling of it at all, which was like a tiny gift from the gods. Then it got really bad again over the next couple of weeks. Stores and grocery trips are the bane of my existence. The aisles are soooo confusing and the floors feel "lumpy" and uneven though I know they're not. It's just me.
What bothers me most now is forgetfulness. I can't remember the names of world-famous celebs. I drive through places I've been to hundreds of times and half my brain says, "Where are we? I think we're lost." I miss exit ramps and get lost. I broke down crying last month in the car wondering what my future will become. And as far as work, I'm a web programmer who suddenly cannot tackle the complexity of logical projects. I hit the wrong keys on my computer all the time. It mostly happens when I get this annoying "numbness" creeping along the top left side of my head.
So, is that an ear problem?
I also get "parasthesia" for a few days every couple of months -- like pinpricks and tingling in random places -- and muscle twitches. It goes away after a couple of days, usually. I was afraid it was multiple sclerosis, or Lyme disease, or maybe cleaning chemical poisoning. All tests negative. I'm going to just pretend it's anxiety induced. This guessing game is maddening.
I tried changing my diet (always good to do) -- avoiding all aspartame, MSG, alcohol, caffeine + more veggies, less meat. Not really any diff with the vertigo, but my gut feels a tad better.
Doing the Eply head adjustments for the ear crystals has not really done anything.
I don't do well with pills. My medical record must indicate that I have anxiety and may be bipolar. The doctors look at the computer, then conclude that I need seratonin drugs and referrals for psychiatrists. (Those pills make me totally insane! I can't believe people do well on them. No thanks.) And the antihistamines and valium-type things just put me to sleep. I sleep all of the time without the pills. Not helpful.
I have given up on the professionals for the time being. Some of what they say is legit, but much does not apply. Was told by the audiologist, "It's not your ears, it's your brain." Was told by the neurologist, "It's you ears, no sign of neurological damage." I was told by the ENT, "your nerves are shot and you have migraines from any type of movement which causes vertigo." He literally prescribed yoga and psychiatry. That's nice, but FU and your 5-minute misdiagnosis. They've suggested it was psychosomatic. Ugh.
Anyway, I'm searching and hoping everyday to come across a bit of cure from any one of you.
Not sure what's real and what isn't anymore. The doctors think I'm nuts, and my reply is, "Of course I'm having anxiety! My brain feels like a snow globe -- all shook up and thrown out of an airplane."
As long as I know I'm not going to die anytime soon, I can keep the panic attacks at bay, and my visits to the doctor to a minimum. I wish for the best and try not to put myself in any situation where I'll be overwhelmed.j
This is too long, I know, but thanks for reading. I welcome any response or suggestions.
Laura
I've just decided to take the next possibility on the list, wrap it around me, and see if it fits this time. I'm going to concentrate on jaw problems making my ear inflamed or whatever happens with TMD/TMJ. It seems a good and likely contributor, but I thought the same thing about Lyme and thyroid and heavy metals and ... on and on.
None of the doctors have ever asked about grinding of the teeth or jaw/face pain, so maybe I've finally finally self diagnosed correctly and can move forward with a solution. Fingers crossed.
I like this video, though it seems like an advertisement, too. I don't know if it's 100% legit --
http://www.youtube.com/watch?v=oAdKVu6vS20
I'm sorry you've dealt with such BS from doctors for so long. I feel your pain. Been dealing with it for over 11 years. It took 10 years of misdiagnosis before the right pieces of the puzzle finally fell into place.
Yes, I, too have heard over the years that it was psychological, nerves, and all the rest. I also walked around for many years with the wrong diagnosis of dystonia and was being treated for it. It wasn't until last year, after much of my own research, that my thousanth doctor sent me for my millionth test and decided that this was due to "inner ear dysfunction" and decided that I should get vestibular rehabilitation therapy (again). The group I was lucky enough to find this time, though, teaches me about how my body reacts to situations neurologically, physically and psychologically and my VRT helps to "fix" that. I also have started visual therapy because of their recommendation. I continue to educate myself because there is so much more connected with my dizziness that they are not teaching me. Thank God for the Internet!
As far as having anxiety, my physical therapists tell me that it's perfectly natural for people with balance disorders to have it. It's what we do with our anxiety...you seem to be aware of yours, so that's a start.
Good luck!
Karin
A lot of times my vertigo is more like someone is moving the bed, or like my legs are moving. But sometimes I am in that snowglobe, too!
Do you all ever notice a whoosing sound or hearing your heartbeat sound when you lyay down? Do you have sensitivity to light and sound, does your vision do strange things, do you ever have headaches that feel like pressure in your head, pain in neck and or upper back? Do you have issues to loud sound and crowds in stores, or does the noise of the shower and vacuum send you through the roof?
My best piece of advice for all of you, please listen close cause I bet you will have your answers or atleast the beginning of answers if you do what I suggest. GO to an Opthamologist, not an Optometrist.
It would surprise the holy crap out of you what can be seen in your eyes, I had an MRI in 2009, was sent to neurosurgeon then also to a opthamologist, then to a neuro opthamologist. I finally have all the answers I need as to what the hell is wrong, were working on what to do about it and have been for 2 years, I am so much better than I was and I looking forward to the day I am symptom free.
Mary
I know thousands of people that went through what many of you are experiencing only to be mis diagnoised.
Here is my story I had first child very young, shortly after had dizzyness everyday. Lots of health issues out of no where for years, was told by irresponsible drs that I had anxiety and panic disorders. This went on for 15 years, I suffered bad, in 2006 it all came to a head, the room turned sideways, I was having visual auras, and had to keep my head tilted to the right so I did not fall down. ER, nor the ent, or PCP could find anything. I knew something bad had happened, I had severe whoosing in my ears, headache, upper back pain, my neck felt broken, any vision was doing odd stuff. I found an orthopedic surgeon, he did an mri. He called me back in to his office that evening. The dx. rocked my world.
Within a week I was sent to several specialist then was refered to more specialized specialists.
In the end this is what we know, the visual and whoosing aka heartbeat sound in the ears are hallmark signs of intracranial pressure being too high. Because my brain pressure was too high for years untreated I developed papilledema this is swelling of the optic nerve and discs in the back of the eyes I had visual disturbances, weird stuff. I went to optomitrists they never found anything, this is why i said go to an opthamologist they find everything. Because the brain pressures were too high for too long my cerebellum herniated out of my skull and is sitting in the head neck juntion creating flow obstructions within my brain and spine. I now suffer with somethin called POTS, signs of this are rapid heartbeat, and passing out or feeling like you might when you stand up, or it happens a lot to me when I squat, or bend over then stand up. What happens is that my blood pressure drops from changing positions, heartrate increases to get the blood pressure up. This happens because my cerebellum is compressed, once again only due to the herniation of untreated high intracranial pressures.
The feelings of depression, anxiety, and panic I had were my bodys natural response to an internal emegency its natural to feel these warnings when the body is ouutta whack. Since the cerebellum is displaced and was disturbed by high intracranial pressues before the herniation occured the dizzyness originated here. This is where central takes place such as rocking, swaying, any movement that is not spinning, that occurs in the vestibular system, which can also be disturbed by increased pressure, sickness, blockage and the like. I hope this story helps some of you, don't take no for an answer, be careful what meds you take there are quite a few that actually cause what I have, be good to yourself by feeding your body right.
Good luck to all of you I'm sure your answer is right around the corner.
-POTS
-Idiopathic intracranial hypertension
-Herniated/displaced cerebellum also known as Arnold Chiari Malformation this is sometimes a congenital malformity, mine was aqquired
-Progressing scoliosis
-kyphosis
Thanks Mary!
Treatments are diet/lifestyle changes
Diamox
lumbar puntures
re-conditioning
Vestiular therapy
Bi annual cine mri to watch progression
Surgeon wants to do laminectomy, cranial fossa decompression but I'm consulting with a new neuro surgeon on a different approach.