Hi, I am new to this forum and haven’t gotten a diagnosis yet but I am seeing a neuro on Thursday again. I really think MAV is what I have. I have 24/7 off balance with head motion sensitivity and neck stiffness and pain. I physically sway when standing (embarrassing!) and am very sensitive to light and sometimes sound. My eyes are usually teary and red on very bad days and I see floaters with blurry vision. One symptom that is awful is a constant heavy head and arms and sometimes legs. Is this normal for MAV? It feels like my head is too heavy for my neck and it bobs; my arms are heavy too which leaves me uncoordinated with them sometimes almost like mild ataxia. I jsut feel like I can’t hold my head up and am being pulled to the floor.
My legs often feel heavy as well - though some days not at all. On hot days (I’m in Australia, currently summer here) they feel really heavy and awful. But I also have MS so am not sure if the heaviness is MAV or MS related. I guess we can wait for others to chime in…
Thanks Jenna, They said I don’t have MS; no lesions on MRI. My legs are kinda weak but my head and arms are heavy kinda like when you are coming out of anestsia (sp.). It takes quite a while to go from lying down to sitting in the morning. When I lay down at night it feels like I am so heavy that I could sink all the way through the mattress to the floor! It’s an aweful feeling. I try not to recline in my chair because it takes so much to get up again. I have a hard time sitting up straight as I feel my head slowly drooping because it’s hard to hold it up. I guess it’s a form of fatigue and I hate it! My doc is calling in a script for Pamalor (Nortryptiline) on Monday so I am hoping that will help. It seems to have helped a few people on here. I also started PT on Friday. The PT said my neck is messed up and I have scoliosis in my thoracic spine which she said explains the numbness in my left arm. I feel like an old woman. I’ve had this for 13 months now with no answers or help.
Sharon, I really hope you have some success with the PT and new drug. it’s really awful feeling unwell, and I certainly understand the fatigue bit. I feel like an old woman as well - oh -hang on - I AM an old woman! LOL. Though mentally I’m still 18.
Do you have a history of injury to your spine or a spinal tap? Just curious…
Yes, I feel that heaviness like you described. I hope you find some relief.
Thank You all, I haven’t had any injuries but I did have a spinal with my C-section 15 years ago? so I don’t think it would be a leak because it’s been so long. Have any of you taken nortryptiline? and if so did it help?
Teary and red, is a symptom of cluster headache.
My neuro asked me if I sometimes felt small.I said no but sometimes I feel my height,I feel really tall,I feel like king kong sometimes.He said it is migraine.So my guess it could probably make you feel heavy as well.
This is a symptom I remember having from previous relapses and indeed the one I’m currently having. Difficult to say because I also have MS whether or not this symptom is that of an MS relapse or migraine, it’s appears to happen when I’m during a relapse when my brain is really struggling to cope. When I stand up it’s asif a sumo wrestler is dragging my whole body to the ground… so hard to balance whilst having this.
Is anyone else the same?
Does it count if just your legs feel like you’ve put on huge ankle weights?
Yep! I just went to take my drink from the kitchen, felt like I was being weighted down like a little elephant, no wonder I’m bumping into everything…
If I was a maid in The Handmaids Tale - I’d be
Oh that’s my middle name “off Balance”. I use it a lot. Well ‘Disequilibrium’ is such a mouth full😆. I’ve been off balance a bit all day today again and since I went out for a brisk walk mid-afternoon and ended up in what appeared to be a wind tunnel on the way home the off balance has been twice as bad so much so although I could walk I couldn’t stand over the cooker preparing the evening meal and as always the head ‘heaviness’ ‘pressure’ all increases in proportion.
‘Heavy Head’, ‘head pressure; was what would always keep me in bed. During a vestibular attack I’d think to get up, get as far as the bathroom, upright surprisingly and with luck, then discover the ‘heaviness’/‘pressure’ increasing to such an extent I’d abandon the idea of Getting Up and most probably have to call for assistance to walk me back to bed. Least head pressure when prostrate always.
The first constant main symptom following my going 24/7 dizzy in 2014 was that rear head pressure. It must have started at the same time as the constant dizziness and both remained continuous, except when I was lying down in bed, for years.
You resting your head on the back of your sofa like me right now? Right ear pressure is also accompanying me, which is good of it, it’s asif they think I’m going to get lonely if I don’t have the two together!!
Had to do that many times but no not current,y. Not (quite) that bad but then I’m hopefully between attacks rather than in one. Btw my ear pressure is always exactly the same both sides at the same time. Always was. Everybody is different it seems.