numbness and shocks
Posted , 11 users are following.
Hello all! I was just wondering if anyone gets facial numbness and electric like shock pains?
Lately my eyelid and cheek have been going numb (a couple times blurry vision) and I get electric like shocks again on my face, legs, arms ,trunk and now my toes.
I had nasal surgery a few weeks ago due to Sjogren's but this has been going on since before that.
Just curious to find out if others have it too though I hope not!
1 like, 53 replies
Megheart tj268
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A funny thing happened one day regarding this. I was in my local supermarket and was ambling down the aisles when suddenly this electric shock and vibration started going through my whole foot. My immediate thought was that there was a short in the electric wiring under the concrete floor. So I moved my foot but the electric shock continued. Like in slow motion, it slowly dawned on me that this was not the floor but this was one of my self generated electric shocks.
Similarly during those early years (2007-2010) I had numb patches over my face, trunk, thighs, buttocks and arms. The facial numbness was often around my lips, eyes and cheeks. The first neurologist I saw was so disdainful of my numerous symptoms that after my tests back then came back negative she wrote in her report that perhaps these symptoms were indicative of a psychosomatic condition.
It may be comforting to know that although these symptoms continued for about three years neither of these two things happen at all often now.
tj268 Megheart
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Megheart tj268
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tj268 Megheart
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lily65668 Megheart
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I remember having the same thought the first time I got the shocks. I was standing in the kitchen one evening when this massive shock suddenly went through one big toe. I had my hands in water in the stainless-steel sink at the time and immediately thought I was being electrocuted! I jumped clear but it still carried on, of course.
This went on for 10 years, non-stop, and I lost all sensation in the toe after the first few years, with the electric shocks migrating up the inside of my instep. My then doctor wasn't remotely interested, said it was due to old age, although I was only about 50 at the time. This was in spite of doing all the tests (blunt and sharp when I wasn't looking etc.) and establishing that it wasn't just subjective, the toe was really numb. The strangest thing is that normal sensation came back very suddenly one day after 10 years and it's been normal ever since, apart from the odd recurrence. As a former neuro nurse I would have thought it impossible that nerves could regenerate after all that time, but that's what happened. So don't give up hope - strange things happen with autoimmune conditions!
lily65668 tj268
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Hi TJ,
Good to hear from you. How are you doing?
I go through periods of having this in my hands and feet (and occasionally a whole leg below the knee) but haven't so far had it in my face. I've always understood it to be peripheral neuropathy due to SS. It was one of my earliest symptoms of the condition, starting in one big toe, so I've had it for about 20 years now. I don't have it all the time, it comes and goes. I'm currently going through a period where I have it in my left hand for quite long stretches of time.
How are the nosebleeds now? I see you've had surgery. I thought of you the other week, when I had another one (though nothing like yours). I'd been pretty much out of action for two months with severe vertigo. It was the benign positional kind, where the crystals in your inner ear get in the wrong place and send wrong information about the world around you - especially the position of the ground under your feet. This meant I couldn't get into the office during all that time for our twice-monthly group meetings and monthly training sessions because the conference room we use is in the basement, reached by a steep spiral staircase. (Anyone who's ever had it will know vertigo and spiral staircases don't go together!) We mainly work from home via telephone and internet, but I was getting some pretty stiff questions about all my meeting no-shows after two months.
Anywho, I finally got myself fixed - a 20-minute session with a specialised physiotherapist who kind of played pinball with my runaway crystals and managed to get them back where they were supposed to be by moving my head around. The following week, I jumped out of bed bright and early, ready to go to the meeting, when yes, you've guessed it! The minute I stood up, the floodgates opened. I started believing I was cursed and would never get to a meeting or training session again. Fortunately, I'd got up with plenty of time to spare, so did my ad hoc nasal packing thing and left it in for an hour, by which time it had stopped.
What was your surgery? Did they finally track down that blood vessel that they said they couldn't find when you had your emergency admission? I really hope they did. You've gone through some terrifying experiences.
tj268 lily65668
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Hey lily! So nice to talk to you again if even under the usual crap*Y circumstances. Aw geeze, that vertigo sounds pretty horrendous!!!!! I get it rarely when watching tv with fat movement or water but nothing, and I mean nothing like you get and I can't imagine how awful that must be. Seriously I don't know how you deal with it. I am so sorry this happens to you!!! I have never heard about the crystals before and I seem to learn so much whenever I come on here. How often are you getting your nosebleeds?? I find it interesting and sad, that a lot of people get the electrical junk also. I didn't know SS affected nerves before. More info on this would be greatly appreciated.
Anyway, mine was called a posterior nosebleed which required emergency surgery as you know. They ended up finding 4 holes, 2 on each side. Docs were pretty much shocked at first I guess because posteriors are rare, then they couldn't believe I never had a nosebleed before or weren't on blood thinners. I'm like, I was making homemade shake and bake lol, sat down to rest, and next thing I know gusher city lol
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They concluded it was due to extreme dryness and Sjogren's and they were able to fix 3 holes but the 4th will be something I am not looking forward to. If it happens again, they have to break my nose to reach it. I guess I have the smallest nose my ENT has seen and I terribly deviated septum. WHo knew???? The only thing we can guess is I was hit by a drunk driver my 1st day of kindergarten and thrown 50 ft onto cement (pretty much almost died) and that's when they think it happened because I have never had an injury to my nose or face. It's just one of the many crazy things I think we ALL go through. I have been not recovering too well. After surgery I had to back to the ER via my Dr because headaches so bad I couldn't walk or sit up. Horrid pain beyond believe. It was complications from surgery and I still am having pains where it feels like a knife is being shoved up my face into my eyes and head. I am doing better lately though still having issues.
Been better the last few days excet for shocks and freaky deaky numbness so I have been trying to work on my house and as usual my Hidradenitis Suppurativa (another autoimmune) has reared it's ugly head and now I have several abscesses. ALSO, I feel like a big baby for whinning about this when you and everyone here also has sooooooo much going on!
I just love you all here and my heart hurts for all you're going through and the challenges everyone faces everyday and I am thankful this site is here where we can all connect to share our experierences, dx's, and vent. Thank you all for being so kind!!!! Please keep in touch lily and everyone
lily65668 tj268
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Thanks for the kind wishes. Just to clarify, the BPPV (benign paroxysmal positional vertigo) is now totally fixed, so I don't have any more problems. It could come back of course. It's actually the second time I've had it in about 20 years, but in the other ear last time. According to some sites, it can be caused by SS. (But then what can't?!)
Now I know how to handle it, I'm not scared of it coming back. Last time round I went to an ENT doctor, who did a whole load of unpleasant (and, it turns out, completely unnecessary) tests, then attempted the same manoeuvre as the physiotherapist, but screwed up and left me much worse. I threw up in his consulting room! An ENT was my first port of call this time too - it would seem logical, wouldn't it? During a 5-minute consultation, this one took a brief history, failed to do the classic one-minute positional test that is all that's necessary to diagnose BPPV, looked in my ears and found the unaffected one partially blocked by a plug of wax. He sent me down the hall to his nurse, who did a successful irrigation, then on to the audiologist. After that he saw me again for a full two minutes, told me my hearing was OK for someone my age (which at least is good to know) then when I asked again about the vertigo - which is what I was consulting him for - said: "The consultation is over". And that was that. It was only when I went to my GP that he referred me to the vestibular physiotherapist, who fixed me in one consultation and at minimal cost. I obviously should have thought of that in the first place. I'm leaping around like a spring lamb now!
Sorry to hear you're still in so much pain. I've never had nasal surgery but I broke my nose in a fall about 30 years ago. It wasn't a complicated break and only needed splinting for a few weeks, but I couldn't believe how painful it was for months afterwards. I didn't get the "knives in my face" thing, but I remember it hurt at every single step I took for about three months, and still ached badly when I was tired more than six months later. I do hope your pain eventually subsides too.
I didn't know you had hidradenitis suppurativa too. That must be awful. I didn't realise that could be autoimmune as well, and had to look it up. It sounds as if you're having to put up with a lot more than me. Please try and look after yourself.xxx
brenwag68 tj268
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This question is for anyone who wants to answer... I had to have 2 teeth extracted yesterday, I saw my dentist on Monday & he said one tooth had a cavity (it was from a previous filling but went bad again) I did not know this tooth was bad because my pain was in a different area. I told the doctor where it hurt & he told me nothing was wrong with that tooth, BUT, he said that a large amount of my teeth have exposed roots (especially the bottom half of my mouth) & that they are exposed so much that they are unable to be fixed... he said that my mouth is so dry it is shrinking my gums causing the roots to be exposed. He told me that I will continue having pain until I take care of this problem (meaning extraction of them all) my teeth are fine but because of the roots my teeth need to go... I am discussing with him the option of implants (not sure if I could get use to dentures) has anyone had this problem or heard of anyone?
lily65668 brenwag68
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I haven't had personal experience of this. My gums are gradually shrinking back from my teeth, but I think this is as much due to old age as anything else, as I don't have too many problems with dry mouth. Up till now, my dentist has been able to cover the gaps and preserve the teeth.
However, I loosened a front tooth in a fall a year ago, and it's been causing problems ever since. I've been investigating all the possibilities, including extraction and implant, but I've come across a number of on-line articles about rejection of the titanium implant that goes into the bone. It seems this is more likely in people like us who have an over-active immune system.
I'm not trying to scare you, and I believe there are several people on these boards who've had implants with no problems at all. I'd just advise doing some careful research before committing to this.
tj268 lily65668
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WOW! Yet I am not shocked with all the rude and incompetent drs out there! So happy you found one who was able to help you and you are doing so much better with that individual problem!!!!
I'm still dealing with nasal problems but they are getting better I guess I didn't realize how much time they can take to heal. Ty for letting me know what you went through...it makes me feel much better!
HS is crazy and not much is known about it except it is an orphan disease and they are pretty sure it is auto immune. Basically I am allergic per my dr to execise and any type of sweating or I get abscesses at times so big I cannot walk or move my arms and they pain can bring you to your knees. I do things anyway because who can live life doing nothing. I pay for it but it's worth it. My dr is looking into something called MAS. Mass autoimmune disorder which is something I bet many of us have. As you know if you have 1 ai you are likely to get more and after3 or 5 I think they call it MAS. Between that and all the nerve problems it will give me something to learn more about. This SS can be the devil.
So glad you are a spring lamb now
Truly happy for you!
tj268 brenwag68
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Oh man brenwag.....I am terribly sorry for your pain!!! Mouth problems are so scary!!! I don't think SS has effected my teeth TG so I can't fully underdstand all you are going through. My mouth and throat yes but not the teeth. A couple of times I thought I needed a root canal and it turned out I had abscesses.
SO the SS is drying out your mouth so bad your gums are receding?! Exposed roots..uhgggg omg! Pain!!! lily seems to have good advice but have you also been on this site in the dental area? That might help too. SO sorry you are going through this! It is so extreme! I will be following you and hoping this gets fixed somehow!
brenwag68 tj268
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Ty... yes I am gonna check the dental area... I'm just worried that if I go with dentures vs implants I will not be able to stand the dentures in my mouth (I have terrible gag reflexes) I also have heard of the nightmares that people go through adjusting to the dentures... take care
brenwag68 lily65668
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tj268 brenwag68
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brenwag68 tj268
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lily65668 brenwag68
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I do actually have a denture replacing the upper incisor next to the one that's been loosened, and I've never had any serious problems. But then I've had it since the age of 12 (not the same one of course!) and that's very different from getting dentures for the first time in middle age. That's another reason for my reticence about having an implant. As I'm used to a one-tooth denture I don't think I'd have too much of a problem with a similar denture with two adjacent teeth on it.
Mine is plastic (or something) and is horse-shoe shaped, fitting all around the insides of my top teeth, but not extending far into my hard palate. This means it doesn't go anywhere near any areas which would trigger the gag reflex. It has two titanium hooks which slide between my back teeth to hold it in place. At least it does since I accidentally swallowed it four years ago, but that's another story...
A friend of mine has the much more expensive skeletal kind of upper denture. This has just a skeleton of titanium strips which fit across her palate, which I'm guessing might be easier to tolerate for someone not used to dentures.
All this only applies to upper dentures. I know lower dentures tend to much more problematic. So far I've only lost two lower molars, but if I ever have to lose any more I'd have to start thinking about some kind of replacement. I'm not sure I'd want to go into lower dentures, and would probably be more open to the potential risks of implants in this case.
brenwag68 lily65668
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Hi.... I just went to the dental forum to see if anyone had any suggestions, problems, etc.... my worse problem is my bottom teeth, figures!!! My four front teeth are really exposed & wiggle back in forth. My top teeth are not exposed as much & do not hurt yet but the bottom is a whole other story the pain is unreal sometimes, plus I have tmj which only adds to the discomfort... I think I will just keep searching & getting others suggestions & try insuring the pain a little longer. My mum has dentures but she loves hers she does so well with hers that she probably could chew down a tree 😜"No kidding" but I'm not sure I can... ty for your info...
tj268 brenwag68
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you're never alone here