Update for the long timers on my condition

Hello all,

I really haven’t been posting much lately. Dealing with the depression that goes along with the change in lifestyle I am currently going through. Well, I am still not working, falling everyday and my MAV stirs right up if I do much. I can visit friends and family and some stores or offices, but depending on the acoustics of the place my time can be limited. Shopping right now will kick my a** and put me on the couch for a better part of the day.

My doctor put me on veripamill on top of the effexor. I spent the second week with that cocktail on the couch. I have finally talked my doctor into taking me off the meds and trying something new. I didn’t have any problems tapering off of the verapamill, didn’t have any problems tyrating up with the effexor. I have recently started tapering off of the effexor and hating it. I feel hungover. Sour stomach, mild constant headache, eyes heart. At least I’m not dizzy right now. :smiley: For the moment at least.

Well, that’s about it for now, hope to be posting more often.
Brian

Have you been lurking? I’m finding success in fighting the dizziness and most other symptoms with Ritalin. I still have break-through episodes with certain climate conditions and if I expose myself to fluorescent lighting. Hmmm…come to think of it, I also break down when I expose myself to a mirror under fluorescent lighting. If wonder if that’s related in any way. :lol:

For me it is acoustics as well as lighting that will set me off. That is why I am having problems shopping and who I can visit. If I am visiting someone with wood floors, I can’t last an hour, 15 minutes with kids. Put carpeting down, and my only problem with the kids is the yelling and screaming as they play while I am trying to talk to someone. (I now know why as a kid I sent downstairs so often. :lol: ) In other words, bad acoustics make me dizzy and the more sounds in that environment and the faster I become dizzy. Regarding lighting, I actually have to see the light flickering before it causes me problems and then, watch out. My ENT’s office has no electrical lighting in the main lobby, just a lot of windows. Because of the acoustic properties of the glass, and the way everything echoes, I don’t last very long in the lobby.

One last thing, no, I haven’t been lurking, just too depressed to bother coming to this sight.

Brian, have you been checked for a semicircular canal dehisence with a proper CT scan, (see Hain’s site) and a VEMP test. Having the auditory symptoms you describe may point that way. Do you hear your heart beat or your eyes move?

Just hoping you can find an answer.
Sally

Been through that testing already. Dr Haine has even looked at the tests.

A friend of my wife’s actually was able to explain why acoustics mess with me. They are both blind and have been through some pretty thorough training and consciously use the acoustics of their surroundings to assist them with navigating. I say consciously because we block out most if not all of those same sounds subconsciously because we use our eyes. I can’t repeat the lecture he gave me on acoustics and how most people actually use them subconsciously to help themselves both navigate and balance, but what he said made sense. He was the first person I have talked to about it that didn’t say, “Hugh, that weird… Well continuing on…” I am referring to the docs here, none of them have even bothered to try to account for that much less explain it.

What’s weird is that I have never found anyone that has a similar problem with acoustics that I do.

Brian - I am so sorry to hear the update. I am right there with you - I am extremely ill and quite sad. how could we not be depressed over this? I hope that you find a helpful treatment soon. try to hang in as best as you can. I know it’s difficult. others found helpful treatment - you will as well!

Lisa,

I think about you often. I know that you are feeling so crummy and I am so sorry about that. I just think about the fact that each day is one day closer to having a beautiful baby and hopefully taking some medication that will help you feel better.

My thoughts are with you,

Claudia

Claudia,
thank you for your very sweet note :slight_smile:
how are you?
Lisa

Hi Brian and Lisa,

The depression that goes along with this is not to be underestimated. I think it works on a few levels - from the migraine itself, from the exhaustion of physically trying to deal with the MAV symtoms and the mental strain of having MAV itself. At my worst I’ve felt quite demented trying to figure out how to just exist with this rubbish day to day, let alone have a job and a life. I really hope you both can get some relief.

Victoria

Victoria - thanks so much. it is so very depressing to go from being an active, healthy, young woman, to disabled. very difficult illness to contend with. hope to find helpful treatment in feb.

Brian - you make very good points about acoustics. I am now so sick that every environment is impossible for me to handle, but some env’s are certainly a bit better than others. I’m sure your wife and her friend have a good take on things. It’s nice when people actually listen and try to understand what we’re going through. hang in. I can definitely understand how the depression has made you withdrawn. I really feel for you and hope you find good health again soon. please check in and let us know how you’re doing when you’re up for it. in the meantime, we’re thinking of you…

Hang in there, Brian…and all of the others who are having a tough time with this more than daunting challenge.

I was partially homebound for about 2 years before I started making good progress (came down with this in early 2005). Lots of horrible symptoms, balance was terrible, hard time coping with this beast. Lost my profession. Real, real rough from a variety of perspectives. Thought this battle might’ve been lost more times than I can count.

Today, my main frustration is actually the economy, because I’m chomping at the bit to get back to the ol’ grind of my chosen profession. So much progress over the last 1 to 2 years. Needed assistance to walk many times in 2005. Takes about 45 minutes to mow our lawn, and I only lasted 15 minutes in the Spring of 2006. Couldn’t walk a mile during much of 2006 without a break in the action.

Today, I run 70 to 90 miles per month. No problem. Easy stuff for me now. I’ve had to put off going for a half marathon due to some nagging injuries, but as long as I can get to a stage where I’m injury free, I’ll definitely run a good one in the next 6 months. For the most part, no problems getting up in the morning, and taking one of my dogs for a 2-5 mile run…even when it’s cold (15-25 degrees), and the cold weather literally used to put me on my back for extended periods of time. Shoot…right now I’m drinking a beer mixed with moonshine and planning my running route for the morning with my Elkhound/Shepard mix (LOL).

There is always hope, even when things seem bleak. Don’t lose faith…please.

Anything I can do for an MAV patient…feel free to PM me anytime. This is more than tough.

MXDXD - great news. what do you attribute your improvements too? are you on meds?

That’s a good question.

From the intangible side, although I thought the war might be lost many times, it was actually a matter of overcoming many battles. Just hanging in there and trying so many different things. I was not shy about firing doctors when I felt they were far, far less dedicated than I was. I was always researching and networking…always trying to focus on progress…which is NOT EASY!!!. This type of ailment is one where it sort of knocks you back several steps to the point where progress seems elusive and perhaps nonexistent.

From the tangible side, verapamil has been helpful. Because I’m also a Meniere’s patient, valium has been massively helpful…and I really never wanted to take valium! Just low doses. Works great for me. Effexor…hmmmm…helpful to a certain extent…but I’m probably going to ween off it.

Low salt and a quasi-migraine diet are helpful. I mentioned beer and moonshine (LOL). No…that’s not part of my treatment plan :wink: !! I can drink some vodka. Most beers will do me in. For some reason, although I hadn’t had a Coors Light in ages, I drank one with my wife a few months ago and it didn’t bother me a bit. I’ll drink a few of those a month. The (legal) moonshine we bought in North Carolina back in July doesn’t seem to bother me at all, either. Red wine…ouch!! Microbrews…no way!!! Regular bourbon…might as well curl up in a ball and suffer for a few days!! Caffeine will kick my butt. No sodas.

For breakfast, I have a pitcher/smoothie full of spinach, cucumbers, and some fruit mixed with a little protein powder. I eat a large bowl of oatmeal with that mixed with cinnamon and honey. I take my verapamil and a few vitamins with that.

I don’t eat out much. A few Subway sandwiches don’t bother me. Indian food does not bother me. My favorite food used to be Chinese, but that stuff will put a bad beating on me. No more of that at all!!! That’s like taking a huge salt and MSG cocktail!!

For lunch, it’s usually just fruits and vegetables. A few times a week I might have a turkey burger or some chicken with it.
Dinner varies, although I often eat something different than my family. Fish and broccoli. Stuff like that.

MSDXD - thanks so much for your response. Just wondering, how sick were you at your worst? I am pretty much bedridden a lot of the time, and cannot now imagine going from this to better. (although I do know it happens). Just curious to know what your symptoms were. I need all the hope I can get.
thanks again,
Lisa

Bad.

From the onset (early 2005), I was pretty much bedridden for a while. I tried my best to make it to work, but I gradually faded and failed. I had some emergency room visits. I needed assistance to walk at times. That was the first 3 months.

One of the toughest things after the first 3 months was the unpredictable nature. There were some days where I could get out and do some things on a limited basis, and many, many days where I was homebound. I wrote articles from home in 2005 and 2006, but it was tough. Write for a while, then go lay down for a few hours. Repeat the cycle. This went on for a long time. I was on my back throughout much of the winter of 2005/2006. Hospitalized once.

In early 2007, I progressed enough to be able to work about 15 hours per week. The good thing about it was that I could pick the days I would work. If I was having a real bad day, didn’t have to work, etc. I was able to do that for half the year.

Made some improvements with a doc starting in the summer of 2007. Improved to the point of being able to work in a slow paced occupation at about 1/4 my normal pay starting in early 2008. Ended up having some problems with that doc, saw another one, and then met with another one in June/July 2008. He’s my doc now, and probably always will be. I’m never “normal”, but the level of progress I’ve made since working with him has been immense.

In short, I felt very, very hopeless and incredibly frustrated for a few years, and now I have lots and lots of hope. :slight_smile:

Symptoms:
Constant imbalance/disequilibrium with a few episodes of full blown vertigo once in a while. Mostly a tilting, rocking feeling. Rotational vertigo is pretty rare.
Aural fullness - fluctuates
Some hearing loss - not too bad
Occasional, wicked headaches - vision would get a little blurry when that comes on
Brain Fog
Used to get some nausea, but real rare now
Tinnitus --but not that bad
Occasional audble clicking in both ears with rhythmic, visible bouncing/jerking of the soft palate - palatal myoclonus
Pressure in the head, neck, and upper chest area - can crack my chest/upper body at times
I used to get pins and needles tingling in my hands and feet, and other spots as well. I’ll stil get what seem to be myoclonic jerks behind my shoulders once in a while. Rare, though. Used to get 'em all over when I first came down with this in 2005 - legs, etc.

I thought that I would post another update. I am still weaning off of the meds, and the MAV symptoms are getting worse. I am falling daily again. I trigger off of so much right now it is ridiculous. Currently I am not leaving the house very much. I would be totally housebound by choice if my wife wasn’t blind requiring me to drive and shop.

The good news is that my mood is drastically improving. I have more energy these days, and I am doing more stuff around the house and sleeping less. I’m posting again if that is any indication of how my mood is improving. :slight_smile:

Brian - glad to hear from you. sorry about the progression of your MAV sxs, but am happy to hear that your mood is improving. what is your plan for treatment at this time? best of luck.
Lisa

The plan at this point is to take me off the meds and get a new base line, see what I am like without anything. My doctor says that he will contact Dr. Hain at that point and see where to go, possibly try a different set of meds. I’m also getting the hole in my ear patched so that we can do some more up to date testing. Beyond that, I can’t really say.

It’s been a while since I have been off the meds so I am getting some of the old sensations back. There are a whole lot of things that I still talk about that I haven’t experienced in a while. The pushing sensations, room tilting and the boat out to sea are back. I’ve just been having problems with no balance, frequent falling and brain fog, and a fun floaty feeling. Now I got all of the fun stuff back. :smiley:

Hi Brian,

I had no idea what a tough time you’d been having with this. Really glad to hear your mood is better. That’s a plus given all of the other stuff you’re dealing with.

Good luck with Dr Hain and hope he has some new insight into this for you.

Cheers … Scott

— Begin quote from "Brian B"

The plan at this point is to take me off the meds and get a new base line, see what I am like without anything. My doctor says that he will contact Dr. Hain at that point and see where to go, possibly try a different set of meds. I’m also getting the hole in my ear patched so that we can do some more up to date testing. Beyond that, I can’t really say.

It’s been a while since I have been off the meds so I am getting some of the old sensations back. There are a whole lot of things that I still talk about that I haven’t experienced in a while. The pushing sensations, room tilting and the boat out to sea are back. I’ve just been having problems with no balance, frequent falling and brain fog, and a fun floaty feeling. Now I got all of the fun stuff back. :smiley:

— End quote

Have you filled out Hain’s questionnaire yet?