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Tingling / goosebumps anyone else ?!

Hello all thought I’d ask a quick question as it’s baffling me. Since day 1 of this I’ve had tingling and Goosebumps over my lip , head arms fingers and legs. Majority of the time it’s my legs and fingers. I was told it’s 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 I’m advance :slight_smile:

You don’t 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 ‘imminent cold/flu on the way’ feeling without the sore throat? Or something else? Helen

YES! Exactly that perfect Explanation Helen! That’s what it feels like ! Dr silver wrote it’s sensory aura !

Do you or have you ever had this ?

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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 it’s sensory aura. Just like visual aura - and I’ve 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, it’s not the flu. Helen

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I get that and numbness, and palpitations and IBS, and… and… 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. What’s difference between brainstem aura and ordinary aura pls? Is this where loss of speech and consciousness comes in? Helen

I’ll respond…pulled in too many directions.

Thanks Helen glad it isn’t just me although it’s been really bad last few weeks and makes me feel maybe I’m going backwards :woman_facepalming:t2: Hopefully the pitz calms it down !

Glad I’m not the only one and yes interested in what @Onandon03 asked too :slight_smile:

Ok. Working from home I tend to be the shuttle for my kid and all his friends. Six more months and he’s legal to drive his friends around. Can’t wait. Today I was escorting his girlfriend to an eye doctor appointment. Back at my desk now, where I’ll be rooted until MAV forces me to do some other thing.

Brainstem (basilar) aura is a special kind of hell. I’ve 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 I’ve 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 I’ve 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 don’t 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%. I’m not complaining. I’m 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 don’t know, sparkling stars and flying birds are kind of pretty. It’s 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.

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Sorry that was so long.

Don’t be sorry on my account. It’s comprehensive and detailed. Useful for reference. There’s nothing like personal experience. Yes, no two people are identical but that’s giving a better idea than any doctor’s likely to have ever read I reckon.

It’s certainly goes a bit farther than my attacks. ‘Do you lose consciousness or power of speech ever’. I always got asked. I haven’t, 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 ‘full’ I always think are always indicators for me. Trigger those at my peril it seems.

Great write up. Thanks for that. Helen

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Always happy to help, or just talk endlessly about myself. :wink:

Sounds horrendous Emily and makes today’s 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 “flutters” 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.

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Well, makes one wonder if its ‘catching’ cos I’ve got it today myself, really badly. No I think it’s 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 I’d got away with it, walked out feeling fine but I do tend to get delayed reactions to things, which is cruel because you don’t know you’ve pushed it too far until you fall over when there’s 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 budgie’s cage when I walk around, and my balance has been steady for almost six months now. And I’ve the ‘not quite flu shivers’. 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 can’t 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 can’t, I can keep my place in space no matter how dizzy I am.

I’ve 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 I’ve 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 it’s a YMCA, my practice is to get off the machine, walk directly into the chapel and give my thanks to God.

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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 aren’t too many of us who managed to get the combo platter. I feel you. I wish you well. :heart:

Crap. Sorry, Helen. My Wednesday was the same. Rest, recover, come back fighting.

Thanks. ‘Fighting’? I’m 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 I’d 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 I’m savage now. And wondering will the levels go on improving or not, and if so over what timescale. I haven’t done a full supermarket shop or ate a restaurant meal in nearly four years. Going at that rate, by the time I next do, I’ll be in my dotage and need a bib and somebody to feed me with a spoon! Savage isn’t the word for it today! Helen

Postscript: eased up good bit yesterday but after reasonable night’s sleep 24 hours on think I’m 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 didn’t stop it happening in the first place. It wd hv bn good if I’d a twin sister - as control - who cd hv had the same experience, wearing my wraparound sunglasses in store!

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