A lot of us are dizzy 24/7. Does anyone know why? Do we have a constant migraine?
Basically yes I think so, or some kind of equivalent migraine activity going on 24/7. As Dr S says, our brainstems have become irritable and so our tolerance for most things that don’t bother normal people has dropped…
I guess so…if this is the case I have had a non-stop migraine since 1998!! It’s amazing isn’t it…I find it hard to understand.
For me, a migraine was NOT causing the multitude of neuro sxs I endure (24/7 dizziness since 2007, brain zaps, blurry vision, fatigue, etc). I was diagnosed with Lyme Disease. My story is in the “Other Illnesses and Conditions” Section.
I have been dizzy 24/7 since 2007 to the point that I use a walker to ambulate and am one step away from being in a wheelchair. You asked why we are dizzy 24/7 and I answered. This is a group of sick people who above all want to feel better. I cannot imagine ever being nasty on a group where people are sick. We are here to support each other and get well.
Sorry your right i was rude i will delete my post
Will you not find better support in a lyme forum?
If lyme treatment isnt working do you not think that it might be migraine after all. Or that lyme could be gone now and you need to treat the migraine.
I apologise again. Sorry
lisa have u started treatment yet and how is it going?
Hillsta - Thank you. I appreciate that. I am a member of several Lyme forums, one of which is comprised of those that have neuro issues similar to mine. So, I have great support there. I come here sometimes, though, as I have sought support here for many years, and have met some of the kindest people here. I care about the people on this forum, and think it’s important to share my story. I would hope others would do the same for me. as far as your question, Scott had asked a similar one awhile back, and I answered it in the “other illnesses” section.
I hope you find your answers and relief. 24/7 dizziness is one of the cruelest symptoms imaginable. I hope we all find stillness again.
Sarah - I am going to take a little break from the computer this afternoon, but will write back to you tonight or tomorrow for sure. I’ll write in the “other illnesses” section. Thanks for always asking about me.
Mavlisa - you will get there. May god be with you xxx
Hillsta – Lisa asked this question 4 years ago when she reported experiencing continuous fluctuating aura and migraine headache. You’ll find it and other good stuff in the “FAQs answered by neurologists”. To recap:
Lisa (MAVLisa) asked the following question:
— Begin quote from ____
“I just do not understand - I’ve been suffering from terrible dysequilibrium (floor moves when I walk) for 2 years now. This symptom (my worst one by far) NEVER goes away!! … however, my headaches are always fluctuating … I have gone through months without hardly any head pain. Last month, I woke up MANY mornings with an aura followed by a migraine … then this month, no auras, just head pain everyday at 3 PM and for the rest of the day … why doesn’t [the dizziness] ever go away?”
— End quote
[size=150]Steven D. Rauch, MD[/size]
I am not sure that anyone really knows the answer to your question, but here is the way I think about the issue of chronic dizziness symptoms in migraineurs:
The vestibular system is your “navigational system” – it tells you where you are in space, it gives you reflexive control of eye movements to keep your gaze stable when your head is moving (e.g. reading a street sign as you drive on a bumpy road, and it gives you information to make controlled motor movements of posture and gait. In order to do this, the vestibular system receives information from the five inner ear balance organs on each side (3 semicircualr canals plus 2 otolith organs), from vision, and from somatosensory sources, especially proprioception (position sense) in the muscles and joints.
During normal vestibular system development in infancy and early childhood, the brain is learning to integrate the inputs from these three sources – ears, eyes, and muscles. For the rest of your life, the brain is constantly comparing these inputs to see if they agree. If you turn your head to the left, your inner reads “left turn,” your vision shows objects sliding across the retina to indicate “left turn,” and your neck muscles are contracting and relaxing to cause “left turn.” Disagreement among the three input channels causes big problems. For example, if you are below deck in a ship, the room around you looks stable but the ear is “reading” the rolling of the ship. This “sensory conflict” causes a feeling of seasickness. The remedy is to go up on deck so the inner ear sense of motion is in agreement with what you see – a rolling horizon and the ship bobs in the water. If a person suffers damage or injury to the inner ear or some other part of the vestibular system, the primary aspect of their recovery is the gradual “recalibration” of the three inputs to bring them back into agreement. This typically takes anywhere from 2 weeks to 2 years, and in some patients, is never completely accomplished. It is analogous to learning a second language – young people do this easier than old people, people who are motivated do better, people who practice do better, and we are all “wired” differently – some are good at learning a new language (or recalibrating their balance) and some are not.
So what does all this vestibular physiology have to do with symptoms in migraine? We now understand that migraine is a disorder of brain chemistry that results in a global disturbance of sensory signal processing – many sensory experiences may be distorted and/or intensified – bright light, visual flow, loud sounds, strong smells, tactile stimuli, and motion, to name a few. Since so many sensory phenomena are distorted, the carefully calibrated integration of the three vestibular inputs is wrecked. Even worse, the calibration is constantly varying as the migraineur’s triggers wax and wane. As a result, the patient feels off balance and seasick for weeks and months (and sometimes longer). To use the language-learning analogy again: this would be like moving to a different country every day – you are never in one place long enough to learn the new language.
Maybe not the most scientific of explanations, but I hope this is helpful.
Steven D. Rauch, MD
Professor, Otology & Laryngology
Harvard Medical School
Mass. Eye & Ear Infirmary
Thanks for re-posting that - it’s such a clear explanation.
You feel like an old friend so please continue posting updates on your progress - we are all hoping for good outcomes for you!
Barb - I feel the same way. thank you so very much!!!
Lisa, I note you clearly reported suffering from recurrent migraine headache and aura. Is that still going on?
Prior to getting sick, I had at most 1 migraine every few years. However, this all started w/ more frequent migraines with aura and bouts of feeling flu like/fatigued. The only symptom that has improved for me is migraine with aura with Nortriptyline. I tried as you know probably close to 15 meds - I lost count at some point - and the only symptom that improved with some were migraine with aura. I continue to have headaches, which is an extremely common Lyme symptom - probably among the MOST common neurological Lyme symptom - as well as 24/7 violent rocking, spinning sensation in my head, brain zaps, bone-crushing fatigue, etc. Just to clarify, I am not saying that head pain ONLY or even dizziness ONLY is a sign of Lyme. but, when a person has multiple symptoms (including head pain) such as myself, that’s when I believe it is crucial to rule out Lyme. I never had a rash, saw a tick, etc., and I have Lyme. This is a MAV forum so I won’t go into detail here, but my story is in the “other illnesses and conditions” section should anyone want to read about my journey.