Wowwwweeee

Hi krahon,

I rarely post on here too much anymore, but I there was a time I was very familiar on the boards. I continue to lurk a lot though. I have an older user name (Wowwweee) also. If you do a search on my older and current user name, you will find that we (and many other posters) have a lot in common as it relates to what we deal with.

I read your post with interest and, because like you (and so many), I have been dealing with my “head symptoms” – some of which seem quite bizarre - for quite a long time. For me, it will be sixteen years this coming April. What an anniversary to remember and keep track of.

I have symptoms on some level almost every day, and more symptoms than what you have listed.

I'm not sure how much you know about MAV - so apologies if parts of my reply are redundant. Here are some of my thoughts.

You mentioned that MAV “…is the diagnosis for our symptoms when the doctors can't ‘find’ anything ‘wrong’.” I will disagree with you! MAV is a neurological condition that is NOT diagnosable using the same kinds of testing that are used to define other types of vertiginous/dizzy conditions. True, there are physicians who may tell a person that they have MAV without truly knowing if that is the causes of symptoms or not (there will always be doctors out there who do that), but it does exist.

MAV cannot be diagnosed by MRI, CAT scan, blood test and the like. MAV is a “ruling out” diagnosis. This means that first, causes of vertigo/dizziness are usually investigated via avenues that are known to cause the symptoms by visual and medical testing. Example: depending upon the symptoms, doctors look at things like ear/sinus infections or head trauma, and/or test for brain tumors, MS, anemia, cardiac problems, etc. The best test to determine whether it is MAV is (for men and women) trialing medications used to treat it and (for women) if their symptoms increase around their menstrual cycle.

Most people equate the word “migraine” with “headache”. But actually, “migraine” means “poor blood flow”. MAV is a condition where the blood vessels and arteries in the brain (usually in the base of the brain) constrict and go into spasm. This constriction/spasming restricts blood flow, resulting in symptoms that can increase or ebb and flow, depending on the where the constriction/spasm is, the severity of the event, and how long it lasts.

You don’t have to have headaches to deal with symptoms of MAV. That’s where the “Associated Vertigo” part comes in. And the vertigo can be anything from “the spins” to just a vague feeling of imbalance, to motion intolerance, to feeling like parts of you are moving when they aren’t. And THESE symptoms can be relentless, can come and go, increase, or be different – depending upon what is constricting/spasming, the severity of the event, and for how long.

And, there are all types of migraines (poor blood flow) conditions. A person cal have Abdominal Migraine. That certainly isn’t a headache in your stomach!

MAV is not curable. It is what it is. Medications can keep it in check – when your symptoms go away because you find the right medication to help you, this doesn’t mean that condition is cured. It just means you have found the right medication that works for your symptoms to prevent them from increasing and limiting your life. Symptoms don’t have to be constant OR infrequent for you to be affected and bothered by them.

I found the list of your symptoms interesting, because I deal with them all, also. Some days not all at once.

The fact that you feel less dizzy and more imbalanced after all these years, I would think, is the fact that you have compensated to a degree after dealing with symptoms for so long. I believe that most people will naturally compensate to a degree (depending upon what they really are dealing with), as well as emotionally compensate – meaning become more used to the feelings and sensations associated with vertigo/imbalance. For me, I feel that I have compensated as much as I am going to, without any further medical or pharmacological assistance.

I also deal with sore “inner ears”. However, that, in part, as well as my neck aches, I can attribute to the way I have become used to holding myself and my head to keep from “spinning” or feeling less off-balance. Over the years, although I may not notice the extreme tightness in my neck as much, between holding myself in certain ways (and this includes how I sleep), my neck and Trapezoid muscles have become extremely tight (think baseballs). The tightness carries up into my neck – causing those muscles deep around the ear to become super-tight. It is actually THIS tightness pain that I am feeling, NOT inner ear pain. The tightness can get so extreme that I feel sometimes I am dealing with inner ear-aches, but I am not.

The shaking that you reference is not the type that you feel in the pit of your stomach when you are scared – I don’ t think some people get that. I believe that most people who deal with vertigo/imbalance deal with this awkward symptom; I think it's the body's way of trying to stabilize when the equilibrium is off. Being "off" has a ripple effect - so it affects all motor functioning, including the way we move in simple ways. It doesn’t hurt, but it is annoying. I have this increase when my balance is really off – as a result, I feel like I am doing everything in small jerks rather than in fluid movements. It also causes me to walk like Frankenstein when my symptoms increase. This is like a side-effect of increased head symptoms for me.

It would have been great if someone would have told me early on that most people who develop imbalance issues also develop some level of an anxiety disorder. For me, I found that my “head symptoms” turned into two issues. The physical symptoms, and the anxiety problem. There have been times when I don’t know what has the stronger hold over me – my physical symptoms and the limitations from them, or the anxiety and the limitations from that.

Honestly, you start to have to deal with BOTH – it can be overwhelming. My advice on that is to get yourself some counseling to deal with the anxiety that is caused from dealing with your physical condition. Getting better control over your anxiety (and depression, which is also common when you become so limited dealing with something so chronic) makes a WORLD of difference. It’s easier to cope with what you have to physically, when you are feeling stronger and less afraid emotionally.

My tinnitus will increase if I have inner ear congestion (leading to “the spins”). My symptoms obviously increase whenever this happens. So, if my ears increase in ringing, so will my symptoms increase. When I get that bad, I will usually have my ears checked out by my doctor, to make sure that either I am dealing with inner ear congestion or I am not. For those people who are not sensitive to imbalance issues, inner ear congestion might not impact them as much. For me however, this can impact me greatly, obviously.

Your weakness and achy-ness might be the result of not being as active as you once were. I have that as well. I am certainly not as active as I used to be because I am too off-balance much of the time. However, you can do stretching, which may help with these two issues. Stretching over time can produce tone and it keeps your muscles moving and limber, even when you can’t do too much else. Try to stretch all muscle groups at least twice a day. Spend a good half-hour devoted to yourself in this manner. It’s important to keep your muscles moving, even when you can’t. Stretching is a good way to take care of this, and yourself.

Also, check your diet. Make sure you are eating healthy even though I know when you are dizzy, etc., it’s easier just to grab what’s around. A multi-vitamin also can help keep you healthy if your eating habits are poor due to whatever reason.

I have all the vision issues that you mention, and some you do not. The “cell like worms” that you mention are just a variation of eye floaters, and are harmless. You mention you get “green stuff” – do you mean green pus, or are you seeing colors? Seeing colors is related to migraine auras and is harmless but can be annoying if the colors are constant. Green pus is something you should speak with your doctor about.

And, not to minimize what you are dealing with, however, here are some other things that you may want to know:

Low blood pressure can add to “head symptoms”. Things that lower blood pressure are digestion, hot temperatures, and dark chocolate to name a few. It is recommended that you eat more meals with smaller portions, than eat three large meals per day; take luke-warm showers/baths rather than hot ones; and eat dark chocolate (if you do) in moderation.

Dehydration plays a large part in adding to feelings of weakness and dizziness. This doesn’t mean that you have to drink eight glasses of water per day, but a few good-sized glasses of something healthy, like water, Gatorade, or watered fruit juice is a healthy habit.

Drinking too fast makes you hold your breath. The more you hold your breath, the dizzier you might feel. Drink slow.

Anemia can add to feelings of dizziness and weakness. Most people think anemia just applies to women in terms of blood loss related to menstrual cycles, but men can have this also. It’s a simple blood test.

It’s also good to get tested for thyroid problems, and Hepatitis A.

Get a cardiologic (heart) check-up. Some sensations of vertigo are caused by underlying heart problems.

Get an thorough eye examination.

Stay away from alcohol, caffeine, MSG, refined sugars (those found in cakes and iced tea mixes).

Chronis Tension Headaches can produce the same types of symptoms that mimic MAV. For the longest time I was diagnosed with MAV. My new neurologist feels that I may be dealing with Chronic Tension Headaches coupled with some Dystonia in my neck. Dystonia is a ‘muscle tightening’ condition that can be quite severe in some people.

Don’t self-medicate. For me, I take 1 teaspoon of Children’s Liquid Cherry Flavored Benedryl mixed with 2 plan 500 mg aspirin. This isn’t recommended for many people, but works well for me to take the edge of the worst of my symptoms. Always ask your doctor before you try something that someone else recommends.

Also, I will put a small piece of cotton in each ear when my symptoms are really bad. This helps the inside of my head feel more “balanced”.

Sometimes, unfortunately, some things are what they are. There are many conditions that go undiagnosed, and/or your symptoms may be just part of your genetic make-up. Vertigo can be one of the easiest OR hardest things to diagnose, depending on what you are dealing with. At some point, a decision is made to treat the symptoms rather than find the root cause because honestly, for many people, a true cause cannot be found. And, as you are aware, vertigo is a symptom of something else. So, our symptoms mean that something is going on, and for many of us, that may mean continuing to wait until additional symptoms present themselves so THEY can also be investigated and added to our list until possibly something is found for the reason for them. For some people, this can mean a long wait until something else pops up that points us and our doctors in a new or better direction.

And yes, it’s awful. Just writing that does not convey how much my life has changed because of what I have to deal with on a daily basis. I could scream it in CAPS, and still someone else would not know how low I have been and continue to be at times. Some days I feel it is a slow, miserable death.

I hope you found something helpful in my reply. Wishing you the best.