Strange Electric, Vibrating Feeling In Head - P.o.t.s. Or Eds?

[monica]

Hi Everyone,

I finally have a diagnosis of Ehlers-Danlos Syndrome. Saw a Geneticist specializing in Connective Tissure Disorders and she confirmed it. Though she said that I have EDS-Classical type and not EDS-Hypermobility/Hypermobility syndrome that my Rheumatologist suspected. She also asked me to get Genetic blood testing done to rule out Stickler's syndrome and Vascular EDS.

I have a question.....Recently, I have been having this strange vibration, almost electric-like feeling in my head. It's hard to describe..it lasts for only a few seconds but it's almost as if my head/brain is getting small electric shocks! Usually happens when I'm standing/walking.

I was wondering if anyone gets something similar to this and if it's P.O.T.S. or EDS related or there's something else going on? My mom who also had EDS and possibly Dysautonomia ( has all the symptoms but hasn't shown it to anyone yet ) said that she gets it too.

I also feel vibrations in my legs/feet sometimes when I'm standing but they very distinct vibrations and not the elecric-kind that I feel in the head.....

Thanks!

[HopeSprings]

I don't think I have EDS, but I do have POTS. I get the head vibration symptom too. It's something that comes and goes. I'll have it on and off for a day or two, then it will go away and come back weeks or months later, stay a few days, leave again. I think it's like you described - like a buzzing vibration lasts a second, stops, then again, stops, etc. and can go on for quite a while. When it happens I swear it's coming from somewhere inside the house or it's something outside - but I quickly realize nope, its coming from inside me! It's very weird and annoying and kind of scary. I also started getting it in my foot this past year, sort of feels like the vibration of a cell phone in my foot. I have no idea what this has to do with POTS.

[monica]

Hi Naomi! Yeah, Exactly! I have it sometimes and it just goes away and then a month later again! It's quite scary..like I'm getting electric shocks or something in my brain. Just recently started having it. My mom said she's been having it for years. The vibration in my foot started last year too.... exactly as you said..like a cell phone vibrating near my foot. The first time it happened I thought it was an earthquake or something, Lol ( I used to live somewhere earthquakes were common).

Incidentally, I have been the most Potsie last year when I finally got diagnosed.... I was having really bad presyncopes left, right and center

[Katybug]

I have POTS and eds. When I have a severe sudden onset adrenaline surge, I get a feeling that goes up the back of my neck and then wraps around my skull that feels like a strong electric shock. It only lasts a few seconds and is definitely associated with the adrenaline. I have "slow steady " surges when this doesn't happen. But anything that causes a more exaggerated startle reflex adrenaline surge causes this electric shock feeling. It stinks!

[MomtoGiuliana]

I get a buzzing sensation in my head and other weird head sensations that are hard to describe -- if I have a flare up. I don't to my knowledge have EDS.

[Dizzysillyak]

I used to get this too. In 2005, when I first found the celiac dot com message board there were a lot of people talking about this. They called it buzzing. They also were talking about the brain zaps I used to get too. For me and those on that board, this was directly from eating gluten and subsided once we got the gluten out of our diets. I actually appear to have had gluten ataxia too that resolved one year post gf diet. I never fail the Rhomberg, kow, now but I did from Jan 1990 - Sept 2006. I still get myoclonus, jerking, from minute amounts of gluten.

If you google theglutenfile, you can see what all gluten can do to our bodies. Things like this are why the gf diet is so popular, not that it's a fad. tc ... d

PS. I'm not up on neuro symptoms from other foods because I'm an undiagnosed celiac but there's info on the web about these. Gluten, dairy, corn, soy and all chemicals in our food and environment are the most common possible culprits but that doesn't mean you can't be intolerant to something other than these. I react to gluten with neuro symptoms, get phlegm immediately in my throat from soy, get shiners from dairy, etc etc ... As you can see most of my reactions are not digestive.

[monica]

Oh! So looks like a lot of us get this. Yes! Brain-zaps would be the right word for it.

This is interesting because I got checked for Celiac disease and don't have it but I was reading that you can test negative for Celiac but still be gluten-intolerant?!

[Tanzanite]

I get my whole body vibrating inside, usually at night when its taking me a while to fall asleep. It's POTS. I have EDS and never got it until my POTS really started.

[HopeSprings]

Oh, the electric brain zaps can also happen with discontinuing an SSRI - just throwing it out there just in case.

[Dizzysillyak]

Oh! So looks like a lot of us get this. Yes! Brain-zaps would be the right word for it.

This is interesting because I got checked for Celiac disease and don't have it but I was reading that you can test negative for Celiac but still be gluten-intolerant?!

I don't think I actually got celiac disease (damaged villi) until 2005 but I got ataxia and started getting those brain zaps in 1990. I had white lesions on my brain but those went away post gf diet too.

I actually don't get severe digestive symptoms from gluten but I hardly ever take chances. I'm on a paleo type diet. My body just decides to dump everything I ate via the runs if I get too much gluten. No real pain other than a spasm or two. But I can't get too far away from the throne for several hours. I know some celiacs who don't get any signs until they've eaten too much for days in a row. One person I know only gets grouchy.

A lot of people are finding out that they're gluten intolerant but not celiacs. More and more medical professionals are figuring this out now too. Theglutenfile is a great resource for how the medical profession has learned in the last few years how gluten can damage other parts of the body not just the celiac section of our digestive tracts.

tc ... d

PS. Please look into other possible sources too. I only know about gluten because its what I react to neurologically but I know others react to other foods or chemicals.

BTW. If you have a pet, they may feel better on a grain free diet too. My dogs coats were a mess and they were on steroids and benadryl non stop until I changed their food.

[Pilar]

Yes! Before I was diagnosed with dysautonomia (among other symptoms) I had these electric shocks in my brain really really frequently. They do not disrupt my balance but are really annoying and it gets to the point where I could not focus on something due to the discomfort, I got very anxious and usually made me cry.

Then I was diagnosed and with my treatment I only get them rarely around the pre-menstrual syndrome. 

[minniti17]

On 1/26/2013 at 3:58 PM, HopeSprings said:

I don't think I have EDS, but I do have POTS. I get the head vibration symptom too. It's something that comes and goes. I'll have it on and off for a day or two, then it will go away and come back weeks or months later, stay a few days, leave again. I think it's like you described - like a buzzing vibration lasts a second, stops, then again, stops, etc. and can go on for quite a while. When it happens I swear it's coming from somewhere inside the house or it's something outside - but I quickly realize nope, its coming from inside me! It's very weird and annoying and kind of scary. I also started getting it in my foot this past year, sort of feels like the vibration of a cell phone in my foot. I have no idea what this has to do with POTS.

Hey HopeSprings,  I have this vibration feeling in the back of my head from POTS. Does this eventually go away over time?