Why is dizziness so chronic, while other symptoms change?

There is probably no answer to this. But, I just do not understand - I’ve been suffering from terrible disequilibrium (floor moves when I walk) for 2 years now. This symptom (my worst one by far) NEVER goes away!! My difficulty processing visual info appeared in my second year of this and has been stubborn to leave as well. However, my headaches are always fluctuating. For example, I have gone through months without hardly any head pain. Last month, I woke up MANY mornings with an aura following by a migraine (I get classic migraine with aura). Then this month, no auras, just head pain everyday at 3PM and for the rest of the day. Today, I woke up with a headache again. Lucky me, I don’t have to wait until 3 today. I can live with all the headaches, etc., but the dizziness is awful. Why doesn’t that ever go away?? I know there is no good answer. I just often wonder if this was all the same thing (migraine) why are some symptoms so constant. When I was on Verapamil it almost took away all head pain, but didn’t cause any improvements whatsoever in the dizziness. I just feel like no med is ever going to help my dizziness. I feel so hopeless all the time. Not good for my recovery, but such a normal reaction to this darn illness. Wish I could feel more hopeful or had an idea about when this awful illness will go away.

I think we all wish we could give you an answer. If we better understood the dizziness, we’d probably understand MAV as a whole better.

Someone should ask Dr. Rauch if he’d be willing to answer a few more questions, and make yours (Lisa’s) one of them. He seems to stay informed as to the current research, and he’s a good thinker.

Hi Lisa

You must have read my mind! The same question puzzles me. With a change of diet and supplements I have completely got rid of my sick, throbbing, right sided migraines. Haven’t had one now for almost four years, although I have constant heaviness and sinus type headaches, but the vertigo and it’s accompaniments have been much harder to eliminate and are with me in varying degrees 24/7 and is the thing that gets me down the most. I have to say though that on the whole, despite numerous “episodes” that have floored me for a while, the vertigo has not been quite so violent since those dietary changes and I’ve bounced back more quickly.

Over the last few days I’ve been pondering the whole migraine mechanism and wondering why the vestibular side of it is so slow to respond compared to other symptoms. Doctors have told me that because it’s MAV the treatment for the vertigo is as it would be for migraine. But that patently isn’t always the solution. If it IS migraine why not? What are we missing?

I like your idea George of asking DR Rauch more questions. If that were possible it would be great to have his input.

Brenda

I go to Dr. Rauch August 11 and will definitely come with a list of questions. I don’t feel so hopeful, though, about getting answers as there seems to be no answers to so many questions about MAV.

I agree Lisa that with MAV there are no definitive answers and usually docs will tell you that everyone is different in how they respond to various treatments. I don’t think you should lose hope, or any of us for that matter, because there is always something else to try, or something we may have tried before but did not give a fair trial… easier said than done, I know:-( I also was wanted to ask if you would consider using verapamil for headache relief since you did not have any side effects, right? I know for me the verapamil has helped my headaches and even if it does not eradicate my MAV symptoms, I will definitely still keep it on board while adding another drug. I know headaches are nothing compared to the debilitating MAV symptoms, but I do feel better not having a headache all the time as I did before the verapamil. Just a thought. I really hope Dr. Rauch has some ideas about what path you should take. Just having someone so knowledgable working with you can offer some hope.
Warmest,
Lisa

Thanks for your comment, Lisa. I have thought about Verapamil again in the future, maybe in combo with Zoloft. I believe that is what Dr. Newman does. That is definitely a thought, as I did tolerate it well despite pretty bad constipation (but I did finally get a regimen down that counteracted the constipation).

Hi Lisa & Co, this is a key point for me too. For the first 4 months I had absolutely no headaches, only constant lightheadedness, which increased with movement or activity and some odd visual issues. Then the headaches began and really haven’t left for long periods of time but the darn dizziness has stayed very constant. It is so frustrating! I used to say that I would trade the dizziness for the headaches but now I ended up with both! I think for me the stress of the length of time of all of this may be what is increasing my headaches, I just don’t know. It is a great question for the Drs but as Lisa alluded to I don’t think they will have an answer…Ben

Hi All,

I asked Dr Steve Rauch this question and he sent me an excellent reply (as always):

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.

-Steve

Steven D. Rauch, MD
Professor, Otology & Laryngology
Harvard Medical School
Mass. Eye & Ear Infirmary

Sent: Sun 7/26/2009 8:41 PM
To: Rauch, Steven
Subject: Quick question

Hi Steve,

Just wondered if you had any thoughts on the following question that has
generated a lot of forum discussion. It’s likely one that is not answerable
and understand if you’re too busy for this at the moment.

Someone wondered why it was that the feeling of dizziness that is generated
by MAV seems to be so constant in all of this while all of the other
symptoms can come and go or cycle away. For example, it’s not uncommon for
some to have 3 weeks straight of waking with headaches and then it will just
stop dead and be gone for months. Or someone might have a round of aura for
2 weeks. But all the while the dizziness is there at a constant sometimes
more intense but never going completely (unless successfully treated).

I can only guess that the whole balance system must be ultra sensitive to
this kind of brain activity and doesn’t get it’s act together quickly and
continues to be knocked around by new migraine events. Of course I imagine
there would be those with other possible vestibular issues which probably
never resolve until the migraine is under control, and are possibly in a
continuous decompensated state.

Thanks … Scott

Good answer, man that even makes sense hah. He should move to sweden :roll:

Thanks Dr. Rauch. That really does make sense to me, and helps me understand what it happening to my body. I guess it also reinforces the need to keep moving despite the awful feeling of dizziness and imbalance. Also I guess is the need to keep the triggers under control. I am really interested in the Mind-Body Stress Reduction techique. I will definately search for a location near me to take this course. If anyone takes it in the meantime, please let us know the results.

Having Dr. Rauch’s input on this forum says a lot about his view of this forum. I don’t start my day without checking in here and seeing what is going on and looking for any helpful hints to get me through the day. Thanks everyone. Keep moving.
Joan

Scott - Thank you so very much for contacting Dr. Rauch. I cannot wait to see him in 2 weeks and inform all of you about the appt. Thanks so much again. I have to reread his response right now.

Hi Lisa – no problem at all. I re-worked the MAV FAQs and dropped your question in there. You’ll be in really good hands seeing him. I’m really looking forward to hearing how it all pans out and what he decides to do for you on the medication front. At least you know you’re going to someone who absolutely understands what’s going on. Half the battle with this is finding a physician who is on the same page and he most definitely is.

Scott :slight_smile:

thank you, Scott. I’m glad to hear that he is also kind. I am so sensitive and depressed these days. I really need a kind listener.