Last week I had a couple of very good days where I almost felt normal for the first time in a very long time at least for most of the day. i have really changes nothing it was very odd to get up with out the waviness, rocking motion …but then Thursday afternoon it just came right back with a vengeance. I felt so lightheaded and tired i thought I was going to collapse or pass out. I took a short nap and felt a bit better…
Does this happen to you guys? I am on no medication other than my Valium very strange indeed and very disappointed to say the least…I was doing a lot of wishful thinking those three days…one can always hope I suppose.
Yes, that happens to me a lot Timeless. I’m used to it now. I’d say it was a very good sign and it’s so good to hear you had a few good days at last. See it as an indication that your brain CAN right itself to a degree and hopefully it will continue to do so and the good spells get longer and the bad ones shorter. Sure, it’s very disheartening to slip backwards again but I think it’s fantastic that even without meds you’re experiencing improvement, albeit shortlived for now. I’d take great encouragement from that and keep on with that wishful thinking, it has an incredible uplifting effect and can only do you good. Here’s to lots of better days … and may they all soon run together!
Yes, it just happened to me today. I felt really good all day - then crash. I started getting the “ocular migraine” thing - with zig-zag flashes and holes in my vision - then the headache. But at least, I don’t have the off-balance stuff back yet. That has been much better for awhile - it is as if the balance/dizzies got better and the headaches got worse. Has that happened to anyone else?
This also happens to me. But I can feel really good at 10:00 a.m. and then by 2:00 or so feel really bad. My symptoms shift many times during the day. At least that was the case in the beginning of this 3 years ago. My MAV symptoms have been associated with hormonal shifts in menopaus so I just attribute it to hormonal shifts. I now have weeks of feel 80% or so then will crash to a 30% or so for a week or so. But as long as I keep myself calm and don’t add to the anxiety of it all it is tolerable. I explained this to my Dr. and she said “Ahh, the great art of under reacting”, I feel that it a big help.
It would be so helpful to be able to figure out why this happens - the sense of having absolutely no control over it makes me crazy. And while I can sometimes find a way to stop the headaches - or at least tone them down - I haven’t found a way to diminish the off-balance stuff or the awful crashing fatigue that just seems to come out of the blue. Some days it is as if I have “traveling” symptoms - maybe starting at my neck, then later my head, my upper back or none of those but just the awful tiredness. None of the jillions of tests I have had pointed to anything. My diagnosis now is MAV since nothing else has been found. I am trying to follow the migraine diet but while that has helped the dizzy/off balance feelings quite a bit it has not controlled the headaches or the fatigue. My doctor said if the diet did not control it we would start trying meds. I hate to do that - I am so sensitive to medication - but it looks like I may have to. (I had a total hysterectomy 16 years ago and have been on HRT patches since so I don’t think my hormones are fluctuating - at least they shouldn’t be.)
awful crashing fatigue that just seems to come out of the blue.
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This has been just awful for me in the last few months and it really makes me wonder if something else is going on…it is like I can not harley stay awake some days and the waviness/rocking goes beyond horrible when this starts. Like right now I slept a good seven hours and I feel like I could just pass out…does Mav do this to others?
Hi Timeless,
These are the times I suppose I feel most depressed about my mav.
a med seems to start to work , I have a few good days and then BANG!
my monthlys are the killer.
I had a good week , the first I’d had in years, and then my monthlys.
prop is helping , but not enough to beat that time of the month.
hate it!
