Neurological Concern (Inner Tremor, Sleep Shakes) Mystery Illness

[bartleyk]

I am a 29 year old, white male in Michigan, USA.

As many visitors here might experience, I have had an array of unusual neurological symptoms over the past 8 months.  I have seen several doctors and specialists (including second opinions) to include neurologists, infectious disease docs, etc.  I have had pretty much every test under the sun (HIV, MRIs, EMGs, EEGs, Sleep Studies, Western Blot, and the list goes on and on) and everything has come back normal except for 1 and I will go into that further down.

Ok, so let's get on to my symptoms.  At times I have this feeling of an inner tremor of sorts.  It is real hard to explain to someone who hasn't felt it but I would correlate it to having an extreme feeling of a caffeine buzz.  I actually feel my entire upper body tremor internally for a period of time and then as mysterious as it appears it just goes away.  There is really no set schedule on when it comes and goes other than at night which I will get to next paragraph.  It thus far comes and goes randomly but appears to be coming on more frequently as of recent.  The odd thing is that if my wife touches my arms or stomach or chest, etc., she cannot feel a tremor type sensation, I only feel it internally.

Having said that, at very minimal times will I actually notice a difficulty holding my hands stable if I try to hold them in a certain, unrelaxed position.  For example - if I try to hold the phone to my head at just the right angle, sometimes my hands will tremble trying to hold it, but at other times, no problem at all.  I only have the problem when I have the internal tremor but most of the time I have the inner tremor I still don’t have that problem.  I have no visible tremor at rest at any time really and the internal tremor is never local it is always the entire upper body and in the back of my head too.

My next symptom is that I occasionally have dizzy spells.  No real pattern to them sometimes that last a few hours sometimes a few minutes but they don't occur that frequently.

My last and most troublesome is that when I try to go to sleep and or first wake up (I guess you could call it a half sleep state) when I try to move my body I can move it but it is difficult because the part I'm trying to move will shake.  The best way I can describe is that it feels like my brain wants them to move but my body is still half asleep and therefore has a hard time moving.  Now, I do not have this problem at all once I am awake.  And also when I lay down to sleep (guaranteed at night) I get a little inner tremor and a feeling of my heart beating in my head and hands, like I can feel my pulse racing through my body but my heart rate isn’t really high.

Now in conclusion, the docs have ruled out most all conditions and I am only left with a few known possibilities (key word - known).  I have been told it could be Parkinson's but the docs don’t think so because they tell me my symptoms are not a typical onset of a PD patient and given my age it would be rare.  They tell me it could be MS, but they don’t think so because I have clean MRIs and other tests although it can occur with clean tests.  I have been told maybe lyme but my Western Blot was inconclusive.  And recently I have been told that heavy metal poisoning could account for these symptoms which brings me to my abnormal test result.

I had a complete blood and hair test workup for heavy metals among other things.  The my blood levels were all normal except for a CD54 lymphocyte appeared to be suppressed or something like that and my hair (pubic hair) tested high for arsenic.  The level in my hair was over 6 times the normal amount but my blood test comes back lower for arsenic.

As you can see I am in a complete state of confusion.  Can anyone shed some light or even ideas for me to check into on this situation?

Thanks for your time!

[Martin-uk]

All i can realy say is  thank god im not the only one

For the last 6 months  my life has been  plauged by health problems   this is just the last in a line of events   ear infections  sinus infections  loads of antibiotics .

I have a problem that sounds  almost exatly like yours .

firstly ive had feelings of virtigo  for the last 6 months  that come and go as they please

this latest problem started about 3 months ago  i first noticed this strange sensation  when i wake up  like a switch going on and off  ---------..........---------..........--------  about 2 seconds at a time    a tremble in my chest and face  it feels  very strong to me  but my partner canot detect it .

more recently  its been happening in the daytime  at random times  it doesnt seem to be triggerd by anything  .  a random trembling in my chest and legs  and sometimes arms   it can last minits  or hours   its  a strong sensation to me   but cant be felt by others .

Its hard to discribe  like  the vibration/ blood rushing feeling you get after  pins n needles .

The past 2 weeks its gotten worse  to the point ware   when i lay down to sleep   after 20 minits   this sensation is so strong  i cant sleep  so i haveto get up  untill it subsides . or take sleeping tablets

its definately made worse  for me  by laying down to sleep  .  

The only anomaly  the doctors have found  is i have a slight atrial flutter   my heartrate  is 100bps
although i am a large lad and my mothers resting bpm is 113

It does feel like my heart is working overtime sometimes    like  sometimes  i only have to  walk down  some steps  and it seems to be hammering away   when infact its nice n steady  n probably a reasonable  rate .

So im starting to wonder if its a circulatory  isue as aparently these can be made worse by laying down
Also my doctor said  that with a faster than normal heartrate  when  your body starts to shut down for the night n slow things down    if your heart  doesnt  slow down  like it should   it can cause  some very odd sensations ..    

I realy hope you discover what it is  .  if you do  id be most intrested in hearing about it  .  i wish i had some advice for you as its  realy  messing me up at the moment  and im shure yoru suffering to

Best regards   Martin

[JOHN273]

I KNOW I AM RESPONDING TO AN OLD POST ON THIS WEBSITE BUT IF YOU HAPPEN TO LOOK AT YOUR OLD POST please email me at ***@**** I HAVE SOME NEWS FOR YOU.

[patsy10]

If it were me, I would make an appt. with a lyme literate medical doctor and get an opinion.  As you already know, lyme testing is not at all reliable.  You are very young to have these kind of symptoms.  Yes, there is lyme in Michigan if you have been told there isn't like I was told here in your neighboring state.

[dannyMH]

dear john,

please be so kind to post THE GOOD NEWS for us who suffer this mysterious diseases.
i too have same problems like those bartleyk and martin. i suffer from inner tremor if i put any part of my body against something solid eg: putting my arms on desk when i type use computer, or around my bottom area to lower back when ever i sit down. it feels like im sitting down on top of CPU of Refrigerator. PLUS RANDOM TWITCHES. pls be kind to  spare some information.

[bartleyk]

I have seen Lyme literate docs, as well as most other specialists with no answer.  So if you have any good news JOHN273 please share.  Post it here or private mesage me.  Thanks.

[jadedangeleyes78]

Hello,

  I came across this post in search for answers. I have the inner body tremors and cold chills that are in my head, hands, back, arms, and torso. They come and go with no warning. They can last from seconds to hours. I can be sitting or standing and they will start. At first I thought it was from my coffee in the morning, so I stopped drinking coffee. They stayed. So, I thought it was from my Topamax. My Dr took me off of my Topamax for a while, and it wasn't my Topamax. And the burning sensation is unbelievable. And the crawling sensation that goes through my head like there are bugs running through my scalp. People keep telling me to get tested for MS, but if MRI's can come back normal even if you do have MS why bother? Then someone told me that some migraines can mimic TIA or mini strokes. The way my migraines travel or have to take a course before I get rid of them sounds like mini strokes. It's just a thought. I thought I would share with you what was told to me by Just Answers from a Dr at the Mayo Clinic. I was told to contact Johns Hopkins since I live so close to them. The best way to get answers is to go to a Medical school where they have resources to the most updated information and they have access to certain research studies and a "team" of Dr's instead of just ONE DR to work on the problem.

[patsy10]

The  vast majority of people with MS do have abnormal MRI's.  I think I read 85% of people with MS.  When people tell you that you can have a normal MRI and still have MS this is true.  However, it is the exception rather than the rule.  I think anyone who has neurological symptoms should have an MRI of the brain at the very least.  Also an MRI of the cervical spine as some people have spinal  lesions but no brain lesions.  There are other tests as well to rule in or out MS like evoked potentials and/or lumbar puncture in cases where it is difficult to diagnose or uncertain.

[sosorenstiff]

Dear bartleyk's
I experienced the same type of tremors at night and the inability to move when I was falling asleep or in a very light sleep.  It scared me a lot.  I had those episodes once a night every week or so for 6 months.  As it turns out, I found out that it's some sort of a sleep disorder, some people have their mind wide awake, while a part of the brain which controls our body is still in deep sleep and therefore not responding.  

My problem were resolved with eliminating stress in my life.  Eating healthier (no more cafeine, chocolate and pop)  and an evening routine of warm bath, evening walk, quiet reading time or other quiet activity to relax you, soothing music, slow breathing when you lay to go to sleep, concentrate on breathing deep, nice and slow.  

I've never had that problem since!

[GracieRuth]

I ran across this discussion in my search for answers.  Much of what you all are saying is true for me, but with one exception -- My body actually does begin to tremor.  At first it was only parts of my body: an arm, a leg, my head...  But it has progressed to where it is full body tremors.  It can be seen by others.  Usually it only lasts a second or so, enough to wake me up, and make my heart pound (although the pulse rate is perfectly normal).

I have noticed that I can almost tell when a spell is coming on now.  It feels much the same as I feel just before I touch someone and shock them.  It's like a fuzzy feeling, or the feeling that some kind of current is running over my body, but very very sublte.

I know that some things make it worse.  Staying awake until 3 AM guarantees a torturous time of jerking awake when I try to sleep.  I'm on meds for migraines and depression, and if I forget to take them, I'm set up for a hard night.  The worst night ever was the night I came down with a migraine so bad that I went into the ER (bad as in I was crying from the pain, and couldn't answer the questions).  They gave me some kind of narcotic, and it was like poison.  My family watched horrified as every time I'd start to fall asleep, my body would sieze for about six seconds.  It can't be epilepsy though, because I'm conscious and can talk (not to mention that this only happens as I'm falling asleep.)

I don't think I've been tested either for lyme or for metals  I will suggest that next time I go in.

I just so want to be able to go to sleep.  I'm developing an aversion because this happens to some degree almost every night.

[SherryinOrlando]

Your systems posted on June 22, 2007 are exactly the same as I'm going through plus more. Here is the question I just posed to the neurology forum, which goes into more detail about what they are. Is there any update on your condition or a diagnosis that you have received? Please share. It's been almost a year since my first symptoms developed - visual problems - transient obscurations of vision that got progressively worse. The opthamologist said my optic nerves were elevated. After a floroscein angiogram confirmed that the optic nerves were swollen, I was asked to get a spinal tap to see if they could pinpoint the
cause. In the meantime, I also developed twitching in my lip and tingling in my hands and legs. I was hospitalized a total of 4 times within a month with a complete workup done for MS, including multiple MRI's and a spinal tap which showed nothing except a couple non-specific lesions in the brain. I was put on IV Solumedrol steroids to resolve "possible optic neuritis", which didn't resolve after the steroids and I was told it's not optic neuritis. I was then referred to the Mayo Clinic for the optic nerve issue, which they determined was "suspected pseudotumor cerebri" and put me on Diamox. A few months of going out there for checkups showed that the swelling wasn't resolving so I ultimately ended up getting off Diamox since a different neurologist that I started seeing locally didn't believe it was pseudotumor cerebri. I have also developed tremor in both hands which comes and goes, joint pains (no visible swelling), muscle twitches all over, weird sensations and parasthesias which are worse in my right arm and right leg, swelling in my left parotid gland which they did a biopsy on and said it's not cancerous (whew!), pain in different parts of the body that comes and goes, palpitations, heartbeat like thumping in my palms that makes my fingers twitch off and on, dry eye syndrome, nose bleeds a few times from the right nostril, shaking inside my body when I'm sleeping or when I just wake up. The body shaking has been getting progressively worse, so bad that I feel my entire body moving - this happens more than I first lay down in bed, if I'm woken up suddenly. I'm not sure if it is ongoing in my sleep or not, although I do wake up once or twice a night due to my fingers twitching or moving involuntarily  , the list goes on. I have seen multiple neurologists, neuroopthamologists , cardiologist, rheumatologists, but don't have an answer. I was back in the hospital last week and they repeated all MRI's - brain, cervical, thorassic and lumbar spine and with the exception of the same two non-specific lesions they found in May '08, everything was normal. The lumbar spine one showed signs of degenerative disk disease but no herniation. They also did all possible blood work to check me for RA, Sjoren's Syndrome, lupus, other autoimmune diseases, but all those tests and all blood work was normal. The quality of my life continues to deteriorate but everytime I see a doctor, they have no answers. Has anyone experienced similar symptoms and received a diagnosis? Any help or advice will be appreciated.

[kl42]

ive had similar innertremors.. on chest area.. and back of neck..plus pulsating in back of neck.. had a bunch of tests. mri of neck, head, thorasic.. ekg. ncv. other nerve tests..all normal..they tell me its anxiety.. its very hard to believe.. but it might be true.. i actually hope so

[llb2009]

I have the same symptoms at 49ys old. But my inner tremors happen only at mid-day naps. I also have ear ticking from time to time in either ear & for a while dizzy or fainting feelings. Ive been told its an outa body experience and remember that we are all basically electrical, so im wondering since everyone is diagnosed normal if it could be some unknown phenominon that has yet to be discoved by mediacl Drs??

[tom_uk]

I have had inner tremor for six months and it is now controlled (by chance) with simple medication, which I'll explain later. My symptoms are much the same as described by others. It affects my legs, arms and head/neck. I also feel it in my jaws when eating. There is no visible tremor. It's much worse on waking. I also have lots of muscle twitches. MRI and neuro tests all OK. Neurologist says its not PD or MS and says that the symptoms are very rare and may just go away or it could be latent Essential Tremor. Separately, I had slightly high blood pressure and too high resting pulse rate 100bpm. For this I was prescribed Propranolol 10 mg twice a day. This not only sorted out the heart and blood pressure but also stopped the inner tremor. I know its the Propranolol working, because if I stop the medication the tremor returns. It also returns if I have significant alcohol, because apparently alcohol stops the med working.

It might be worth others trying Propranolol (low dose) to see if it reduces symptoms.

[nanagillian]

have any of you checked out the website  www.orthostatictremor.org  i have been diagnosed with this and some of you sound similar, im now trying to find if any research has been done into steroids only when i take them for my ashtma it gets so much better, but the neurologist has never heard that!!! take care everyone and good luck, Gill

[sparkle3100]

Please help...these inner vibrations etc symptoms started for me March 4th during a trip to Mexico and maybe after a "sting" by an insect there. I also have a lot of burning...anyone else?? As you all, my extensive tests and exams show normal- thank God but what is going on?? Does anyone have an answer that they have found or has anyone had this go away finally?? Please, any answers anyone???? So disturbing and bizarre.

[sparkle3100]

Oh and like most of you the inner vibrations are in the upper body region...chest, back,arms etc. - my inner vibrations are in this area of the body as well. Please post if anyone has had any "real" help and how, what, who, and where did you get your help and answers.  Thanks!

[digid]

I'm 23, and experiencing the same problems. They started a few days ago, and i've never really had them before. I think its pretty clear when its something the doctors can't find any evidence for they simply write it off as, "Anxiety," which i find absurd. I have a very calm life, and i take no prescription medications what so ever. I do have the tendency to be anxious at times, but quickly rationalize it to calm down.

I have inner tremors, and it mostly happens at night and wakes me up in fact. I'm reluctant to take prescription drugs just yet, but feel i might have to.  

[wettingen]

it sounds like some on this page have different symptoms from the original poster.  but addressing some of the more common:

first, the sleep problems - when your brain wakes up but your body will not move - this is known as sleep paralysis.  sometimes pressure on your body, tremors, buzzing in your ear, and even hallucinations can occur.  but it happens to almost everyone at some point in their lives.  some have it for long periods of time, others experience only once.  

secondly shaking -  i have been known to go through fairly violent twitching or shaking while falling asleep.  sometimes i just tremble.  it comes and goes, but i've found that it happens most often in times of stress.

inner tremors - i have felt something similar to a few of you - i have been really convinced there was a generator or something electric under the floor that was making me feel vibrations until i realized there really was nothing.  i have no idea what it is, but i don't let it worry me too much - let me know though if you find out something.

visible trembling/shaking - however, i've also gone into terrible trembling which was visible to all - this was a result of an extreme anxiety attack.  i know, some of you will be skeptical.  but panic attacks are known for coming when you're not actually feeling panicky or stressed about anything.  they just hit.  and if they are severe, they have very physical results.  one is severe trembling.  another is numbness in hands and feet/arms and legs, or face.  sometimes your muscles will feel extremely tight very suddenly.  i've been to hospitals twice for this reason; once i even called 911 because i thought i was having a stroke - it was really that physical and terrifying.

in the end, if you have symptoms and they are bothering you, go see a doctor.  because it may indeed be something serious.  and if nothing else, seeing a doctor will make you feel better.  if the doctor can't figure it out, keep trying, but realize that a lot of things really have to do with stress and anxiety.  focus on lowering those.  and remember not everything that happens with your body is a sign of illness or disease!

[llb2009]

Almost a year & I still have inner tremmors as I sleep. Every single time. Even a nap. I dont take anything but vitamins & am pretty healthy. My research has lead me to belive it is KUNADLINI RISING up my spine. This is eastern & not reckognized by our western Drs. Look it up & see if the symptoms fit.

Im perfectly fine during the days & live a calm quiet rural life. No stress

[shellyrules]

hey all im 25 years of age, and i also i suffer the same problem the inner shacking and i i have for the past 7months.
I have pretty bad anxiety but its alot better and suffered it for 4 years.
im realy scared of the inner shacking as its been happening through the day as well as when i am trying to sleep well on the verge of sleep.

it started may 09 and yes it has gotton a bit better but the docters says it is anxiety so on to the zoloft i go which mind you did help it alot.but as i was feeling better i went of zoloft and with in a couple of days it was back the promblem im having is on the verge to sleep i here a noise and it starts the inner shacking in my chest i thought it was my heart at first, but its like shacking from the inside,it feels terrible, it helps to have your bedroom door shut no noise just a black room helped me alot to get to sleep, it doesnt happen to me when i am in a deep sleep i can wake up and i will be fine just when im on the verge of a deep sleep, it scared me so much a while back and i was to scared to sleep,

Also through the day the inside tremors start if im just sitting down and i get up and start running or i start boxing the same thing happenes the inside of my chest starts shakeing from the inside out .
maybe it is anxiety i dont no

[ninemia]

Guys, you should check your middle ear for something called Perilymphatic Fistula which is a small, practically undetectable, hole in the labyrinth.  It can occur spontaneously, and it can be fixed with a small procedure. It definitely explains the inner tremors, even the dizziness as time goes by. It can develop into vertigo. It can be difficult to detect though. The ENT must be a specialist.

[ninemia]

Also, if it is PLF it is aggravated by: a) salt, b) caffeine, c) blood rush in the head (lying down etc), d) alcohol, e) phosphorus.  You may notice some synchronization between your pulse and the tremors, such as say five (tremors) to every beat. This is probably because the labyrinth detects, since it has a hole, some nearby arteriole.

[fefesullivan]

I am 49 and have been having these attacks off and on for a few years.  I haven't consulted a physician.  My tremors occur only at night and it is mainly upper body with the worst being in my cranial cavity.  It feels like my brain is having seizures.  It is really scary and I am just too afraid to go to the doctor!  I have recently developed a feeling of weakness, during the day.  I also have shaking hands.  

[outbackinisa]

Just reading through everyones comments. I have the same tremoring sensation that a lot of you have experienced. Even my husband commented that he could feel me vibrating while i was sleeping. I have a lot of trouble getting off to sleep, twitch a lot and my hands often shake. I have  found something that works that you may be interested in. Of course i'm not saying it will work for all of you, but i have noticed it works for me.
I take 2 zinc and magnesium tablets before bed at night. I am now able t relax and don't seem to have any vibrating when i remember to take them. Magnesium i believe needs zinc to help it be absorbed(correct me if i am wrong) Magnesium also absorbs metals in the body and helps them be  excreted. Most people are magnesium deficient in Australia, so it's quite likely that foods grown in America or wherever you are from are also deficient.

Hope this helps, you have nothing to lose, so give it a try and let me know if it works for you.

[torsotremor]

I too have had the 'torso tremors' for the past four months..... went to the doctor, thinking I was waking up at night having a heart attack in the middle of the night. All tests were normal, anxiety and panic attacks were diagnosed. Surprised me to find a normal pulse in the middle of the next night.... and that my heart was fine..... it is not one thing that causes stress and anxiety and panic in sleep,,,,, it is many things which in and of themselves are not the cause,,,,, but the compounded effect of all of them accumulates in your body.... meditation, relaxation, hugs, friends, good love all help ;)

torsotremor