If I don't Take My medication

Hi Everyone,

I have been dealing with this dizzy condition for 15 years and in late 2006 finally received a confirmed diagnosis of “Migraine Equivalent” and or MAV. The only medication that has given me some relief after all these years is a anti-anxiety medication called Xanex. If i don’t take the one pill in the morning…this is what happens:

i wake up in the morning feeling not too bad…but by mid-morning i began to feel the Rocking Motion Increase…also Tension inside my head Increase. My equilibruim is affected. It becomes even difficult to keep my thoughts when talking to people. I cannot think clearly. These symptoms will excel to a point that i feel like i’m on a boat on stormy seas. Although it’s not a cure, the anti-anxiety medication (Xanex) helps me to work a part-time job, go to a movie or concert…be with friends, etc. Without this medication…i honestly believe i would be home-bound. The motion is too overwhelming. Does anyone experience similar symptoms?

Joe

ps. by the way…i recently began taking Verapamil. So far no improvement…but it is still to early.

Yep, Joe, I know exactly what you mean. I am homebound. I wake up feeling kind of okay, but never normal, or good. The more I’m up and around the worse I get. The only way I travel at all is by sedating myself with lots of Valium.

I’ve had improvement with Zoloft, but hit a wall in terms of being able to tolerate the arousal aspect at increased doses. I’ve added Neurontin and am having a good result. It’s only been a week, but I’m very encouraged.

I have Valium which I use a couple of times a week, on days I need to be more functional.

good luck with your verapamil,

Julie

Hi Julie…so we have similar symptoms. Actually…when i wake up i feel sort of ok…but within an hour or so the motion begans to excel plus the Tension increases. Anothewards…my mind (inside my head) does not feel Relaxed. Just the opposite. Another way to describe the symptoms are (for example)…if you were to slightly Jar a Fish Bowl…you know how the water would swish back and forth & every which way…that is how it feels. Also…if it weren’t for the Xanex i feel pretty positive the Vertigo would return. I use to have a fair amount of vertigo for the first 8 years or so…and then i began to have less episodes and was able to decrease the amount of Xanex i was taken daily. By the way…at first my doctor was going to let me try Neurontin but she said that medication takes alot longer to bring on any improvements and that Verapamil (if it helps) would be quicker.

I sure hope you make much more progress. Keep me posted.

Joe

Joe,

That is exeactly how I am feeling today. I live in the midwest and still get spells that I can tie in to either eating wrong, stressing myself out over something or weather. I know today it is weather because last week the temps here were in the single digits with over a foot of snow on the ground, today, it is near 40 and no snow on the ground. Such sever weather changes will make me feel like I did before I started taking meds.

The migraine preventative meds that I do take, if I miss a dose, will not cause nearly as dramatic of an effect because it stays in the system much longer. Xanex has a pretty short half-life, just a few hours, as compared to the med I take. By the way, my quick fix (but short term fix) is valium, same faliy as xanex

Joe,

You describe your symptoms very vividly. And every time you use water as part of the image, it makes me dizzy just reading it. That fish bowl - at my best, like first thing in the morning, it is moving gently, at my worst, it is practically spilling over the sides.

Ugh!

Julie

Brian,

I understand Klonopin (anti-anxiety med) is much longer lasting but i have had good results with Xanex for many hears that i am reluctant to change.

Julie…regarding the fishbowl Scenerio :-)… it doesnot feel like water (liquid) swishing around but more like TENSION AND throbbing together in my head…which Creates this Motion that goes every which way (like water would do in a fishbowl). If there was someway to Shrink the Tension inside my head i personally believe i would be well again. It sort of like this 24/7 cluster Tension like sensation.

Joe

It’s hard to describe these things, isn’t it. I have the tension, big-time, but no throbbing. I also have the sensation that things are going every which way, even my thoughts and visually. when I was at my worst, it felt like my head was being whipped from side to side, like I was being hit. I would lie in bed and sometimes my head would actually move back and forth.

Why am I so embarassed to describe how bad these symptoms are? There sure has been a lot of shame connected with this.

Julie

Julie,
I totally agree with the shame issue. I hate to admit when I have symptoms or limitations. I agree that the fish bowl image is making me feel sick… Once, I ate at a restaurant that is literally in the harbor, and just the waves got to me.
Kira

Julie…i don’t know if it’s shame or i just feel so different from most people. The reason is because our condition is on the Rare side so most people don’t understand it. They get the Classic Painful Migraine…but not the Silent Type with Motion.

Joe

yes, it’s rare to see anybody with these symptoms. When I first started going to doc’s offices, neuros, otolaryngologists, who claimed they worked with dizzy people, they looked at me in astonishment. Not one of them had a clue to what was going on. One guy said, “I have no idea, but this is real bad!” I thought, “thanks a lot.” Another guy, when I was hoping this was BPPV, shot a look at my husband and said, "oh no, this is much more serious than this, and I don’t have a clue. Both docs referred me on real quick. But I had the feeling, just the way I was treated by their office staff, etc., that they were shocked by what they saw. I felt like a freak. I even said a couple of times, when clinicians were insensitive, “look the reason I’m here is because I’m real sick. I thought that’s what you did here was see dizzy people.” I was really shocked and dismayed at some of the treatment I got, from doctors and supporting staff.

I knew I had found a good doc when he was totally comfortable with me - it’s like he knew walking in what he was dealing with. And he’s also been confident that he will “cure” me, as he puts it. I don’t hope for a cure - I just hope for treatment that will help me cope with getting thru each limited day.

Julie,
In my experience, so many neurologists don’t have a clue about migraine associated vertigo. My daughter was hospitalized with a status migraine, when she was 16, and her major symptom was vertigo. The pediatric neurologist didn’t get it. She kicked her out, still spinning, brought her back for an emergency MRI, and as she lay vomiting in the MRI suite, told us she could re-admit her, but this time she’d get a psych consult. Our ENT saw her, and immediately knew what it was, and tried to start her on amitryptyline, but she couldn’t tolerate it. I dragged her to Boston, and the migraine expert there didn’t get it either. Finally, I had her see my otologist–just to confirm and validate the diagnosis.(Even I didn’t get it–because my vertigo started with a virus and BPPV, and the MAV diagnosis was figured out due to the strong family history of migraine.) She’s been stable for several years now, but she had about a year and a half of misery during high school. It made the situation so much worse when all these experts didn’t recognize what was going on. I found the eMedicine article during the ordeal, and I distribute it widely to her doctors. Even her current neurologist didn’t quite get it, but he was willing to listen to our ENT, and read the otologist’s consult note. Hard enough to be dizzy, and to be told you’re nuts, because someone doesn’t recognize or know about MAV.
Kira

Kira,

Right! And having to do all this research, leg-work, etc. in this debilitated state. I still can’t believe all the work I did to get a correct diagnosis and effective treatment, in that condition. I was so sick I had no idea how I would even get to a doctor. My husband and I got so desparate that we just decided one day to drug me up and go - and then you get all this insensitivity and cluelessness.

There must be a place in heaven for us :slight_smile:

Jul

Jen & Julie,

Years back i was on a higher dose of Xanex daily. So i have made alot of progress in that respect because currently only take one tab daily (lowest strength you can purchase) and if i have a very stressful day then i will take one extra tab. The point i want to make is (since i am experimenting with Verapamil)…the day that i can go without any Xanex at ALL…is the day i know that the other medication (like Verapamil) is working. I always carry one tab of Xanex with me whether it be at work or a movie, etc.

Joe