Hello all thought Iād ask a quick question as itās baffling me. Since day 1 of this Iāve had tingling and Goosebumps over my lip , head arms fingers and legs. Majority of the time itās my legs and fingers. I was told itās linked to Vm , dr silver mentions it on his website .
Does anyone else get this ? Has anyone been given any explanation on why it happens ?
Many thanks Iām advance 
You donāt say what Dr Silver attributed it to? Did he say?
Not exactly sure what you mean. Is it that shivery sensation you sometimes get anywhere rather like āimminent cold/flu on the wayā feeling without the sore throat? Or something else? Helen
YES! Exactly that perfect Explanation Helen! Thatās what it feels like ! Dr silver wrote itās sensory aura !
Do you or have you ever had this ?
Not more than a million times certainly. Used to get it on/off every day when really really bad. Later more often than not just before something that had triggered symptoms actually makes you worse so makes sense, if itās sensory aura. Just like visual aura - and Iāve only had those last couple of yrs, but the shivery thing on/off for ever. Used to worry it was a cold/flu coming on, but know now, sore throat missing, itās not the flu. Helen
I get that and numbness, and palpitations and IBS, andā¦ andā¦ I have brainstem aura so I figure any aberrations possible from the central nervous system are on the table.
Enlighten me please if you would. Whatās difference between brainstem aura and ordinary aura pls? Is this where loss of speech and consciousness comes in? Helen
Iāll respondā¦pulled in too many directions.
Thanks Helen glad it isnāt just me although itās been really bad last few weeks and makes me feel maybe Iām going backwards 
Hopefully the pitz calms it down !
Ok. Working from home I tend to be the shuttle for my kid and all his friends. Six more months and heās legal to drive his friends around. Canāt wait. Today I was escorting his girlfriend to an eye doctor appointment. Back at my desk now, where Iāll be rooted until MAV forces me to do some other thing.
Brainstem (basilar) aura is a special kind of hell. Iāve talked about it in-depth in other places here, but not for a few months. From what I gather, the common aura is visual. Usually a scintillating scotoma or partial blindness. Brainstem aura kicks that up several notches.
I get lots of little aura symptoms all the time. So far, only one has forced me to show up at the ER. But I was totally unmedicated a year ago when it happened and had been exposed to a variety of major triggers for weeks on end. Fire season in the Pacific Northwest is a pain in the butt. This year I wore a mask 24/7 for weeks. A cute mask, but still.
The big whomper migraines begin with a visual disturbance (bright scintillating scotoma, blurred field of vision, tunnel vision and rotating barrel vision, and other moving hallucinations - usually birds flying in the perimeter of my vision) and progress to mild numbness in all extremities and/or loss of feeling on one side including the face, tongue, pallet and all of one arm, and a powerful outer body experience followed by muffled hearing, extreme mental confusion, nausea, incoherence, dizziness and/or vertigo, altered states of consciousness and exhaustion. It feels like a slow moving grand mal (tonic-clonic) seizure, which, unfortunately is also something I can speak to from experience. Oh, and my head hurts like Iāve been curb stomped.
For days after a big migraine I experience a lot of confusion, mental absence and exhaustion, mildly slurred speech, nominal aphasia, light, olfactory and sound sensitivity, nausea, dizziness, fatigue, IBS and a persistent tension headache. My neck usually feels like Iāve been in a major car accident. Migraine can pull my atlas out of alignment and aggravates my already advanced TMJD. Because I have an endocrine disorder (PCOS), my blood sugar and insulin do a sort of flamenco dance that just exacerbates all the migraine issues. (I expect both PCOS and MAV have a genetic component based on a common disorder, probably on the X chromosome. Migraine is genetic. PCOS probably begins spontaneously in response to epigenetic factors and then becomes genetic as the genes get passed down.)
Between big migraines I get all sorts of mild to severe issues - visual snow that sometimes sparkles, halos, refractions, moving colored lights, rotating barrel vision, the birds or things dropping vertically, auditory and olfactory hallucinations, numbness in my right hand and/or parts of my face, full ears, tinnitus, sinusitis, constant IBS, headaches, dizziness, vertigo, motion sensitivity, sensory sensitivity (visual, auditory, olfactory, touch), brain zaps, sometimes my core temperature likes to shift up or down leaving me feverish or freezing, my skin will crawl, itch or get sensitive, palpitations, air gulping/yawning, fatigue, mental confusion - you know, CNS stuff at the very root level. The brainstem is a very old, very primitive part of the brain that controls autonomic functions. Chemical and electrical misfires there can affect anywhere in the body. Effexor has lessened but not eliminated most of these. Though it added weight gain, nightmares and something that feels a lot like my brain has the hiccups. Weird.
I have vestibular paroxysmia, too, from a vascular loop on the left auditory nerve, but I know exactly what movement to avoid so that I donāt get quick spins.
While yesterday was a 40% day, most days are in the 85% range. Exercise helps. I can take a 60% day and turn it into a 90% day if I run a long way, provided I get thru the nausea, headache and imbalance of the first 20 minutes. Effexor and ketosis got me from about 20% to 80-85%. Iām not complaining. Iām happy with where I am at this point. Though, sometimes I still get surprised when someone else reacts to something I was just sure was a hallucination. I donāt know, sparkling stars and flying birds are kind of pretty. Itās not all that bad, if you accept if for what it is and then resolve to sing and dance and play - and always push your boundaries.
Sorry that was so long.
Donāt be sorry on my account. Itās comprehensive and detailed. Useful for reference. Thereās nothing like personal experience. Yes, no two people are identical but thatās giving a better idea than any doctorās likely to have ever read I reckon.
Itās certainly goes a bit farther than my attacks. āDo you lose consciousness or power of speech everā. I always got asked. I havenāt, yet. Presumably no damage to yr brainstem. I had none to mine on MRI though I think the neuro-oto thought there could have been possibly. Neck pressure and back of the head, cerebellum area and then ears āfullā I always think are always indicators for me. Trigger those at my peril it seems.
Great write up. Thanks for that. Helen
Always happy to help, or just talk endlessly about myself. 
Sounds horrendous Emily and makes todayās ear pressure niggle sound trivial. I am not sure I could push through the nausea etc in order to do a run - I am not very good at running long distance anyway. I can only just about manage to walk at a reasonable pace and do a swim one or twice a week. As you say though it is good to push your boundaries. Jan x
I also get that symptom of tingling in my arms, trunk and legs along with always feeling cold. All my blood work is normal so I am just assuming it is part of this whole MAV disorder. I also get a lot of the symptoms āfluttersā just explained in detail (thank you). I suffer from those weird symptoms due to brainstem aura. I am finding the diet is helping me the most. It is keeping me from getting the dizzy/vertigo symptoms that I was experiencing everyday. I still have a problem with visual disturbances, brain fog, motion sensitivity, palpitations, etc from time to time but I know that I will continue to improve if I decrease all the migraine triggers.
Well, makes one wonder if its ācatchingā cos Iāve got it today myself, really badly. No I think itās more likely to be because I spent 40 minutes yesterday in a SportsDirect shop trying on what seemed like every womens trainer in the place. Thought Iād got away with it, walked out feeling fine but I do tend to get delayed reactions to things, which is cruel because you donāt know youāve pushed it too far until you fall over when thereās no immediate/quick reaction to stimulus. I just woke up this morning with it, and my balance is rubbish, knocked for six. I feel like one if those little plastic toys that roll around in the bottom of budgieās cage when I walk around, and my balance has been steady for almost six months now. And Iāve the ānot quite flu shiversā. A sign I pushed it too far. Forty minutes of artificial store lighting. Helen
The funny thing is MAV has improved my running. I found out pretty early on that if I exercised for more than 20 minutes I could take a dizzy brain fog day and turn it into a healthy day. I started by swimming but gave that up when the gym got too crowded. I still canāt share a lane without getting visual vertigo and nausea. Just the thought of it makes me nauseous.
I run on the elliptical. It seems odd that all that extraneous movement would be ok, but it is. The pounding of a treadmill makes my head hurt. The elliptical I can hold on to and close my eyes. If my feet and hands can feel it, and sometimes they canāt, I can keep my place in space no matter how dizzy I am.
Iāve learned to dance the line. Never let any symptom get over 20% worse than baseline before slowing down, gathering resources and waiting it out. When the dizzy or nausea calm down or I can feel my hands again, I speed back up. In this way Iāve worked up to regularly running 6-6.5 miles in about an hour.
Usually if I get past that first 20 minutes of awful, MAV clears up. I walk straight, feel stable and my mind is clear and energetic. Because itās a YMCA, my practice is to get off the machine, walk directly into the chapel and give my thanks to God.
Diet and exercise went a long way for me. I needed Effexor to get to more or less functional and able to keep running my business.
I hope there arenāt too many of us who managed to get the combo platter. I feel you. I wish you well. 
Crap. Sorry, Helen. My Wednesday was the same. Rest, recover, come back fighting.
Thanks. āFightingā? Iām savage about it really. This time last year I sat out in full sun in the countryside wearing two sets of glasses and a hat (@jojo65 pls note the hat) thoroughly content although I remember the light did bother me a bit. Spent the next two days really really off balance, could barely walk. Still that was an improvement on the previous summer when 3 minutes standing in full sun in the garden made me dizzy for a full week. Somehow, yesterday I had the now seemingly daft idea Iād be OK spending 40 minutes trying on shoes in store under artificial lights wearing no dark wraps but a basketball cap and prescription specs. I was fine until I came out, slight wobble. Cooked evening meal but otherwise rested, and then today, BAM. beginning of this week I sat out in full sun, no dark wraps, baseball cap 30 mins or more, no problem so I was envisaging my tolerance thresholds were way better than they proved to be yesterday. So Iām savage now. And wondering will the levels go on improving or not, and if so over what timescale. I havenāt done a full supermarket shop or ate a restaurant meal in nearly four years. Going at that rate, by the time I next do, Iāll be in my dotage and need a bib and somebody to feed me with a spoon! Savage isnāt the word for it today! Helen
Postscript: eased up good bit yesterday but after reasonable nightās sleep 24 hours on think Iām virtually back to baseline so guess that proves Propranolol is working. Prior to meds an attack brought on by store/restaurant would have put me in bed for up to 8 days. It would appear the drugs hv reduced to severity/duration considerably. Just didnāt stop it happening in the first place. It wd hv bn good if Iād a twin sister - as control - who cd hv had the same experience, wearing my wraparound sunglasses in store!