hi

i dont know if im in the right place, but if anyone here can relate, any advice really,

ok, prob is for nearly three weeks i have had this very strange sensation in my head, its like an eyelid twitch but its not my eyelid it feels like its in my brain, when it twitches my eyes move too, because whatever im looking at jumps with each one........i have no headache, just this horrid twitch, jerk, jolt dont know what to call it but no pain....this is scaring me bad......im not on any meds and eat healthy stuff....its soo distracting and i dont know of anyone who has this....

ok to add, this goes on and off all day and when i wake at night its there, now my tounge has started twitching badly but only when lying down in bed, just from waking up, it has a mind of its own and i can feel the muscles elsewhere in the left of my face twitching to but not as bad as my tounge............this seems to stop when i get up but the twitch in my head doesnt.... if anyone could reply id be gratefull , i hope i dont sound like a crazy person but this drives me crazy....

i went to my gp and his suggestion is migraine, i know people with migraine and none of them have this twitchy stuff.......i thought of something else i notice when im at the computer its worse, my eyes jumping/twitching......

thanks in advance for anyone who will reply

bumping up

Hi alana,

Does that weird feeling in your head feel like a ripple or shiver? Where do you feel it in your head? Do you ever feel it behind your eyes when it feels like your eyes are doing something weird? Has anyone seen your eyes doing anything funny?

hi lynxgal

i feel it in my head, kinda mostly at the back of my eyes but can feel like base of neck and inside the top of my head, its hard to describe the nearest i can liken it to is a muscle or nerve jump/twitch that has a breif vibrate/shiver effect too, they are only seconds in duration, but come and go most of day, like ill have an episode of 20 (i'll call them blips) then it may stop for 15 mins and start again, with every (blip) my eyes bounce once, when i ask my dh to look he said he could see a slight move of my eyes.....the last 2 days have noticed a tenderness behind my left eye and a slight vague feeling of tingling on left cheek not major maybe cos im panicking? i notice that the computer screen can make it a bit crazy so i im limiting myself on here for now.......

thank u for replying lynxgal, appreciate it, i hope u r ok?

have you actually seen any sort of eye doc just to get his evaluation on the symptoms along with a good eye exam?they can look somewhat into the brain thru the eye and would see any oddities that could be present tho it is a rather small "window'it is a look.if this doesn't show anything i would really seek out a good neurologist at that point.getting his eval as well would help you track down the reasons.obtaining an MRI wouldn't hurt either,just to get that look inside the brain area.just make certain that the MRI is a contrasted one,this would just show up areas,like the arterial structures and others,that would not show as well without the contrast dye.this could just be an overactive muscle type issue or something else entirely.but this most definitely does not appear to me at all to be any real migrane type syndrome.i do wish you luck in tracking down the culprit here.please let us know just what you find out.marcia

hi feelbad

no i havent had eye exam lately but i am due for one now so i will book that, i have some inner ear stuff going on for a long time now so i have seen a neuro otologist i may get in touch with them to see what they think, i havent connected these symptoms to that problem as ive never felt anything like this before but who knows, it sure is weird, thank you for your suggestions, hope u r ok

hi lynxgal

i feel it in my head, kinda mostly at the back of my eyes but can feel like base of neck and inside the top of my head, its hard to describe the nearest i can liken it to is a muscle or nerve jump/twitch that has a breif vibrate/shiver effect too, they are only seconds in duration, but come and go most of day, like ill have an episode of 20 (i'll call them blips) then it may stop for 15 mins and start again, with every (blip) my eyes bounce once, when i ask my dh to look he said he could see a slight move of my eyes.....the last 2 days have noticed a tenderness behind my left eye and a slight vague feeling of tingling on left cheek not major maybe cos im panicking? i notice that the computer screen can make it a bit crazy so i im limiting myself on here for now.......

thank u for replying lynxgal, appreciate it, i hope u r ok?

Hi Alana,

Sounds kind of similar to my spells. I have had 21 today (ya I'm counting). Sometimes mine are more like an electric shock feeling. I had my eyes tested 2 weeks ago and everything was normal. My eye sight had not even changed in the last 4 years (yay!) I had an EEG done today. I guess I will not get the results for a couple of weeks. My GP is on holidays starting Monday for 2 weeks. I have the numbness in my face on and off too. I also get numbness in my right forearm. I work on the computer all day and It seems to make it worse for me as well. Keep us posted. I would be interested to hear how your eye appointment goes.....Take Care!

Is the inner ear thing also on the left side? If so, I'd suggest going back to your neurologist or even seeing a ENT. All facial nerves pass thru the inner ear (I'm uncertain about the ones behind the eye).

It could be as simple as a little pressure on the nerves from inflamation. But there are many possibilities and I don't think migraine is one of them unless you have quite a bad headache. But complex migraines usually are more of a minor paralisis or drooping on one side.

Hope you get it figured out.

hi lynxgal, timetowinarace,

ok, i went to see neuro oto and they ran an abr test, it took an hour to do as something was showing up, at the end of the test dr said that at level 5, whatever that is, wasnt quite right but was fine as equal both sides......

they are saying that it is a basilar type migraine, have put me on an a/d for the management of it, said as scary as these symptoms are , they are not detremental to me, said that migraine has many varients and not as i thought (severe bad headache, have to lie in a dark room) lynxgal, i dont know all your symptoms but what i do see is symilar with the numb tingly sensation on face, arm, sensation inside the head of shock/twitch apparently they can be an aura....now to me that is spots of light or jagged light, also headache tends to be at back of the head/neck but can be at the front or even without the headache just the auras.....all a bit confusing..... timetowinarace,when my symptoms of inner ear stuff started 4 years ago, this being the second and different type of dizziness, a caloric test showed left ear wasnt functioning as good as the right and gave me a dignosis of labyrinthitus, but as time went on (didnt recover within 6 weeks) they now think is this varient migraine, it was this new symptom of twitching in my head that made me think something bad was going to happen as never heard of it being associated with a migraine.......hmmm

lynxgal, please let me know when you get your result of eeg, how long have you been having these shocks/shiver inside the head?


thank u both for your reply

Hi Alana,

I have been having the shock/shiver sensation for about 3 months. Interesting about the inner ear thing. My caloric testing showed severly reduced in both ears equally. I think with me, the visuals are actually aura of migraine I am just not getting migraine anymore. This is apparently common for people with a long history of migraine as they age. I am anxious to get the results of the eeg. Will post when I do.

Hi Alana,

Just wanted to let you know that the nurse at my GP's ofc said my EEG was normal..... I think I am just going to give up trying to figure this out. I am tired of going to the Doctors ofc and taking tests....I think I am just going to try to learn to cope with this.... Hope your eye appt. went well.

hi lynxgal
glad to hear that eeg was normal, but its so frustrating when they (docs) cant get to the bottom of it and actually tell us what is causing these weird extremely unpleasant symptoms, do you take any meds? my neuro put me back on remeron which i really didnt want to as they make me put weight on big time. i know how you feel about getting tired of appointments and tests spec when you cant get proper answers.

i am going away for a few weeks but if its ok with you i'll post and see how u r doing when i get back, i hope u feel better than u have been

alana

Hi Alana...have a good trip....chat when u get back.....I got a dx.

hi lynxgal

how u doing? we had nice break apart from couple days for me, what is your dx? i hope u r feeling better, my head twitchy/zap thing has receded, not entirely gone, i dont know if its the meds or that i have been away from the puter thats helped......anyhow let me know how things been with you.

alana

Hi Alana,

Glad to hear that you had a good holiday and are feeling better. I am on holidays this week as well. :-) DX 1. bilateral vestibular dysfunction. DS 2. silent migraine. was give an ad as well. Have been taking it for just over 3 weeks. It is not helping in fact I had a full blown migraine for 2 days earlier this week. The balance of this week.....it is like it is stll there especially when I bend over...I have a follow up on Monday. Will let you know how it goes. What meds did your doctor put you on?

hi lynxgal

that sounds similar dx to me as well, tho my vestibular was one sided, i am sorry to hear that you had an attack despite starting the meds, same here, on hols i had 2 days of (diff to describe) jittery, zappy inside my head, then the next day it was like trying to walk during an earthquake on and off......my daughter recognised that i wasnt right and grabbed my arm....a few days back i woke to having vertigo for the day it wasnt as severe as it can be but ruins the day anyway....and u just feel so vague afterwards....

have you had your follow up?

the meds i was put back on is called mirtazapine or remeron i think is called as well...........they havent stopped all the symptoms if any as i think they fluctuate anyway........other meds ive been prescribed are propranolol and epelin chrono not quite sure of the spelling anyway i didnt take those as the side effects sounded scary.......

i hope ur meds start to kick in....hope to spk soon

alana

Hi Alana,

Sorry to hear you had another bad go of this stuff again....you described that well....I get the same thing but for longer. My brain zaps and weird feelings last for a least weeks....then I will have a couple of days where my balance is really bad....like when you try to walk but it is as if the ground is rushing up at you as the same time your leg goes down......it's weird! Then I will be really spacey for a few days and tired. Then I will have a good day! Love those......then it starts all over again! I have been on the meds for 4 weeks today. The numbness and other weird neuro stuff seems to be decreasing slowly.

I had my follow up yesterday...my doc decided to double my meds and I am to see him again in 3 weeks. I will start the new dose on Friday night cause it wipes me out for days.....hopefully I will be use to the new dose by Tuesday. It's really hard to work when you feel so tired and have brain fog! Keep your fingers crossed for me....I really want this to work so I can feel normal again!

Do you find your meds are working yet?

Take Care!

hi lynxgal

yes, i will keep my fingers x that the med works for you, and knocks it out for good, i am supposed to be on 30mg of my meds but i have remained on the starting dose of 15mg so maybe thats why some symptoms still creep in .... i have been on these before and made me gain so much weight, not that if these meds could rid me completely of this migraine/vestibular stuff i would accept that, but its like now i have weight gain added to it and for a lot of people weight gain alone is depressing dont you find.....at the moment those new type of symptoms that i came to this board for have (after about 6 weeks approx) become less intense as they were practically all day every day to mainly in the evenings here and there except when i was away and had 2 days of it......and the tingly/numb sensation has 'gone for now' (dont want to jinx myself) ......so what im left with that i have always now is constant sensation of motion like on a boat, ive had this for 4 years now, and so far nothing has knocked it out execpt over time it has become less intense as when it started it was horrendous and freaked me out big time, i also have tinnitus for the last 14 years, do you have tinnitus? a lot of people with our symtoms do......i was also dx with bpv as a child. i bet like you, we have quite a few symptoms of this stuff so when a new one comes along you just cant believe what else could happen to you.

i know what u mean about the ground rushing up as you walk, and the brain fog can be real bad, at times i have felt not connected to the world around me, like im in a bubble and can see it but not feel part of it...

i hope your med increase does the trick it is hard for you when you have a job to work around, is it full time? i am part time....do your employers understand? please let me know how u r doing.
alana

Hi Alana,

Glad to hear that some of the stuff is reducing slowly for u too. I do have a little tinnus.....but it is very mild and does not happen very often. I do understand about the weight gain although for me that would be a good thing! I am way too thin and have lost even more weight with all these symptoms and the sick stomach that goes along with the vertigo. I have been waiting for that side effect to kick in. It hasn't happened yet. I get that rocking feeling too sometimes. I work full time and it has been hard...but my boss is pretty good. Keep me updated with how u r doing. Hope you have a symptom free day!

hi lynxgal

i went thro a stage of being very thin too, for years, this migraine thing has changed over the years, when i was younger i had spinning vertigo a lot and felt sick daily, the nausea has gone mostly now, and the spins i have periodically and touch wood i dont feel the nausea anymore but i have been left with a daily but different vertigo that of false motion which you have had too...
all n all not a bad day today, hope you dont feel to wiped out on your increase, good luck with that, spk nxt wk see how ur doing

take care
alana