Hi all, I have cut and paste the below from what I wrote to a doctor, I know there is a lot of text but maybe more is useful ? I would be very grateful for any feedback !!
Sorry if it comes out all messed up.

Hi,

For 3 years now I have been suffering from a health problem that seems to baffle most doctors. It all started one day when I was working on something
and had to crouch and stand about 3 times. I suddenly got a horrid sensation of my head dropping to the ground and then back up again, like a yo-yo
feeling but with my brain instead of a toy.

This happened 3 times until I laid down on my bed. Afterwards I couldn't stand very well and I felt very sick, I also had very dark vision and it was
fuzzy. Whenever I tried to walk I felt sick and virtually toppled over. I had awful nausia. I found I could walk about 2 hours later, but I still had many of
the symptoms, just not as severe.

So, now, I am still left with these symptoms and it just doesn't seem to get any better, but not all that worse either, except for the depression.

I have had a MRI and all was okay, I have seen a eye doctor and all seems okay. I am seeing a ENT next week in case it is a inner ear problem.

So now I am left with fuzzy eyesight (NOT floaters, I see like a snow storm, millions of micro dots all over the place, things also seem to move slightly),
a dull front and top and sides headache (constant, rarely varies in severity), a stiff heavy neck, bad balance which changes from poor to bad often,
dizziness which is very severe and I feel like I am standing on my head all the time as my head is tight, along with this I have smaller problems like
insomnia, over emotional, lack of concentration, disorientation, anxiety, and depression (which is becoming a worry to me). Also worth me noting is
that I can't go to the movies as when I hear loud noise and build up music it makes me very nervous and anxious, once there was a big build up in a
movie I saw last year, and it made me feel VERY cold and I shivered and my hair felt it was stuck up, I nearly passed out, yet 4 years ago I saw the
same movie and had no problems at all, it ruins my life.

Also I thought I might mention that sometimes when I sneeze I see really solid white/silver lines that shoot about in my vision, it makes it near impossible
to see, it only last 2 minutes but is very very visable. Oh and when I stare at something it keeps getting darker and darker until whatever I am looking at
is a huge black fuzz, especially on white objects and with little blinking.

Can you give me any ideas what I should try and do ? Could it be that too much blood is getting to my head, or too little ? Could I have had a mild
stroke or maybe even MS ? Or is a inner ear problem really possible ? I am 22 years old by the way and this started when I was 19. At the bottom of
this message is the medicene and tests I have taken.

Please advise if you can, I would really appreciate it, I am very desperate to find a cure.

Best wishes and thanks,

Jon in the United Kingdom


Medicene Taken - Serc 8 and Stemetil
Tests Taken - Viral Blood, Standard Blood, Adreneline Test, Urine Test, Diabeties Test, MRI, Eye Test, vertigo head exercises (which knocked me
sicker then I have ever been).

Hi John in the United Kingdom:

Some MRI's can come out negative, and a second one will show the problem. Your letter sounds very similar to the side effects of MS. I was reading in the MS board about a MRI with contrast, and without. Which did you have?

MS is lesions on the brain. Maybe you could have some lesions, but they are real small and are overlooked on an MRI. I also had a lumbar puncture to confirm my diagnosis of MS. I first noticed my symptoms when I fell in my kitchen bending down to pick something up off the floor.

I'm not a doctor, but I would suggest you see a neurologist, get a second opinion.

I really hope you find out soon what is going on. Bye for now.

[This message has been edited by moderator1 (edited 04-04-2002).]

Hi, I was going to say inner ear dysfunction before you mentioned it, That can cause your body to feel completely helpless, it's a pretty big thing, people have had inner ear dysfunctions for 10 years before they actually found out what it ws. All of there doctors chose not to see it, therefore overlooking the dysfunction and prescribing them some medication to see if it goes away, this is something serious and definately needs to be checked out, just because your one doctor might say it''s not inner ear dysfunction, it's still best to get anothers opinion because people have gone untreated with this dysfunction for years because there doctors told them nothing was wrong , It took some people up to 5 doctors before they actually figured it out, Sorry not trying to scare you but this is a dysfunction that many doctors overlook. I'd like to know what you found out?

Check into the possibility of vasovagal syncope. You would need to see a cardiac specialist that is qualified to diagnose this condition. A cardiac electrophysiologist would be the expert to see. You can call 1-800-786-7723 for an expert nearest you.

this sounds a lot like TMJ and that is what I am going through right now too. Do you have trouble focusing? Do you feel pressure by your eyes and nose?

Hello Jon, you have described me perfectly!!!!! I started out 5 yrs ago with small bouts of dizziness. I noticed every time I did any bending over jobs, for any length of time I would get, what I call a lighting bolt across my eyes( except I know now its my brain) they call it a silent migrain, and I lose half of my vision. I have had 4 MRI's every test I could possibly have except one. EEG, thats next for me.YOu name a medicine , I've been on it and they all make my condition worse. I have fuzzy eye sight, snow, or micro dots in front of my eyes, I'm anxious and nervous all the time . I can not drive anymore, because of becoming dizzy or confused. Your are right, it stops your life.I try one day at a time fix. If I can today I will, and if I can't today I wont.I have stopped worrying about it as much, and lots of prayers. I believe I'll make it and you will to, not quite like everybody else does, but we will be OK.

John, I know how you feel. Listen to my story

Approximately 10 months ago, I awoke with a strange stiffness/tightness sensation in my head. Not at all present the night before, this newly developed pressure enveloped my entire head -- it was most prominent in the forehead, the sides and in the upper neck region. Accompanying the physical sensation was one of mental stupor. I felt vapid -- I could not concentrate, focus or rationalize clearly. At first, I associated the pressure and mental malaise with a common cold -- I felt as if I was comming down with something (my nose was running) and that I would recover quickly -- however the feeling has persisted. I have trouble thinking, speaking, and seeing straight ...I feel as if I am in the twighlight zone since I cannot comprehend my surroundings or interact with people. Anxiety attacks, memory loss, are frequent as is a tingling sensation which shifts from my head to face to my extremities. I was a heavy drug user (ecstasy and cocaine) in the past for approx. 2 years but I do not understand how drugs could provoke this literal overnight change....especially since the transformation did not immediately occur after a binge period (it occurred about a week later). I am at my wits end..I have seen about 10 doctors (allergists, general practitioners, and neurologists)and explained to them my situation. I have had an EEG,a CAT scan, and an MRI. They have found nothing. They continually allude to the idea that my problem is purely psychological and that it was not a stroke. However i beg to differ isnce my symptoms are reminiscent of those accompanying a stroke. I have been prescribed numerous forms of medication. The most recent ones have been Valproic acid and I am now on Nortripyline and something else. These drugs do virtually nothing. Does anyone know what my problem is or have any suggestions for medication??? I cannot go on living like this. I am acutely aware of my inability to function in reality and i cant do anything about it...please help .

--

what can cause double vision

have you ever had lsd?

John, ask a neurologist to look at your MRI films again. Look at the actual film and not read the radiologists interpretation. Ask him to look for Arnold-Chiari malformation. It is relatively rare but can certainly cause all of your symptoms and more. A lot of radiologists over look it when reading the MRI as they are not really familiar with it. Good luck to you.

Hi Jon,

Most of those symptoms (if not all) sound SO familiar to what mine were.

READ THIS, it may help. (This may get long...)

I'm 22, and the age that I got "sick" (as I call it) was 20. But that's really when it got bad. I remember the dizziness starting as young as 12 or 13, and I had seen docs for it, but they gave up on a solution so I just considered it "headrush" or something like that. But at around 20 it got bad. Dizziness, blacking out, nausea, headaches, chills, loss in cognitive function, etc etc. I went from 150+ pounds to 104 (I'm 5'8), and I was bedridden for months. I won't spell out the whole story - you already described most of it.

Anyway, I went to MANY doctors of every trade on the east coast when I lived there. A friend of mine suggested that I might have Orthostatic Hypotension and that I needed what is called a Tilt Table Test. I couldn't get approved for it on the east coast (USA) - no insurance, no money. So I came back to California where I asked a doctor about it. He referred me to a cardiologist who then gave me the test. It was hell, but worth it. A 'positive' test (meaning you have Orthostatic Hypotension) is a severe drop in blood pressure. Instead, I passed out right away.

After the test, I asked the cardiologist if I had O.H. He said "No, much worse." It doesn't sound much worse - it's called Vasodepressor Syncope. But the effects of it are astounding - it can even cause death. Right now I'm regulated on Pro-Amatine (which can be a dangerous drug), but I might have to get a pacemaker as well, which is frightening. The cardiologist is trying to convince me. I will forever have this disease, but at least I know I can control it.

What it had done to me before I started getting treated was just horrendous; it altered my entire life. Actually, I didn't have much of a life left to live. But now I have hope and I feel much better.

So my recommendation is to see a cardiologist and ask for this test. It IS a rare condition, and trust me, a lot of doctors don't even know about the TTT (Tilt Table Test)! If you can find a place that does it, ask to have it. It also tests for P.O.T.S. (I forget what that stands for, but its somehow similar to O.H.)

Hi all, anyways, I think you should contact a neurophysiotherapist, perhaps you have a sensory dysfunction, thats what it sound like to me

Chiari malformation is DEFINITELY something to rule out on MRI. It is rare but causes many symptoms. I had decompression surgery for the Chiari recently and many of my "Fibromyalgia" symptoms are improved or gone. Also check Thyroid levels,Lyme Disease,Lupus,etc. Make sure your doc is doing thorough tests and get copies.

The best place to start is by making a SIMPLE syptom list. Start head to toe and put it all down even if it doesn't seem related. (For example,mine read: Headaches,Ear pain,IB,balance problems,neck pain,lower back pain,chronic yeast infections,achy legs,etc.) Fold the paper and inside put down any tests,medical problems,diagnoses,etc and roughly the time period. Hand it to your doctor and wait for the response. Sometimes if we are ill and under pressure, we forget things or are too wordy and the list is a sure fire EASY thing for your doc to reference. As I got more ill and was seeing more doctors, I put my symptoms on a spreadsheet and referenced the onset,duration and pain/disability level on a 1-10 scale. The doctors loved it!

Rach

[This message has been edited by cioc1212 (edited 08-21-2001).]

a lot of your symptoms sound like neurological lyme. Most docs are very illiterate when it comes to lyme disease and will insist that you don't have it when in fact you may. It requires a lyme literate doctor (llmd) to diagnose and treat properly. This is something you may want to look into.

Dennis

[This message has been edited by moderator1 (edited 04-04-2002).]

Another suggestion is Meniere's disease. I was hospitalized for 8 days 2 years ago with similar symptoms. This is a virus that isn't undertstood too well but eventually most recover. At times it has led to complete loss of hearing. Check it out-inner ear infections can have numerous effects on our bodies.

Jon,

I have read all of the replies you have gotten, and you have gotten many. I agree with the person who thought it sounded similar to Vascovagal Syndrome. This disfunction has many names, I was diagnosed with it, however, my doctor refers to it as Neurally Mediated Syncope (NMS). I have been diagnosed with this along with my mother, my sister, and my cousin.

The idea behind Neurally Mediated Syncope (or whatever you want to call it) it that there is a mix up in the message delivered from your brain to your heart. So when you move from a lying position to a standing position, your blood pressure drops instead of rising, allowing little or now blood flow to your brain, which is necessary to function! When this happens, it can cause severe dizziness, headaches, blackouts (the blizzard, I refer to it as TV fuzz) and even passing out. When your blood doesn't get to your head it pools in your arms and your legs. When you get the blood moving (by doing your squats at work) it gives your circulation an extra little kick to help you feel better temporarily.

If this sounds similar, I go to a cardiologist to regulate me on medications. They first diagnosed me by doing the Tilt Table Test (TTT)
.
I take Proamatine, but often times for severe casses, doctors will use a combination of medications usually including some type of beta-blocker like Toprol.

I hope this is somewhat helpful. Good luck in getting the help you need. http://www.healthboards.com/ubb/smile.gif



------------------
*Rachel*

Hello Jonread and others,

please read up about emf,
youll find the symptoms some what identical.

Hi Jon,my name is Nick and i think i have something very similar to you,again with no apparent medical cause.However,my symptoms started whilst i was using recreational drugs(cocaine mainly).I went to sleep one sunday night loaded on booze and coke and woke up with slightly tight fuzzy head(similar to nervous exhaustion,fatigue)Constant dull to painful headache/pressure in various places around the head,particularly the temples.Weakness/shaking in the legs round the knees(constantly when standing),sensations of bodily weakness and underfoot movement(like someone's slowly pulling the carpet out from under you);these build up when you stand still almost like you have a gentle weight pushing down on you.Pervious to this(6 weeks)i had my first bad drug experience.It happened to be on coke and booze,although i had done tons of speed and pills for several years with no bad effects.Anyway,i had a bad heart scare,it started beating erratically(fast and slow,sometimes missing a beat);i **** it big time.I was in total panic,scared for my life,i went to a friend's to calm down;despite all this i carried on doing coke(i was addicted).But from that day on i had a constant slight nervous shaking though my whole body,with acute attention of my heart behaviour;in fact it seems to beat harder(not faster)now or at least feels like that in my head and neck.Well,nine months later from that i again awoke after another loaded night,to find that my symptoms felt worse and my vision was now patchy/blurry like sunspots or when you rub your eyes and open them,except it didn't completely fade away.I too,see movement in my peripheral vision field sometimes and if i look at an object for a while,it appears to move/distort like when i was tripping on drugs.I stopped using drugs completely then,i was so scared and panicked by the way i was falling apart that it stopped me dead.That was 18 months ago,recently i had a bad bug/flu,whatever-Iwas vomiting,had the ****s.in bed for 2 days,off work a week.In that time,my shaking/weakness has got a lot worse,fatigue,headaches also,hard to keep a clear head now-bad enough before;i have left my old job,i can't handle it now.I have had blood tests,seen and ent specialist,MRI scan,acupunture,chinese herbs,reflexology,massage,crainial osteopathy,prozac,amytriptilene,nutritio nal and vitamin therapy,ECG test;the bloody lot.NOTHING,ZIP,ZERO. Or so the establishment tells me........Depression,anxiety over this are now rising fast and hard,until recently this was just managable.I am just about keeping the wolf from the door and following the last line of investigation-Psycotherapy/hypnotherapy-sound wacky?Well do some checking and ask yourself if you had some very stressful past experience or fear that could be coming out in you now through illness.Try looking at Post traumatic stress disorder/anxiety neurosis and psycosomatic illnesss,if you think any of this applies.They think i'm a mystery too.....however my psycotherapist told me he has seen people who turned to him in desperation,after having seen every doctor,having every test known to man with no avail(sometimes 17 years down the line);only to find that their problem is psycological.The last place anyone would look,the brain's a powerful thing.....but what it creates it can remove,with help.I hope my problem lies there and that it can be attacked.....maybe yours does too.Be warned though,there are no quick answers here,the workings of the mind are vast and complex to say the least and very individual.Hypnotherapy may be the quickest way there.
Anyway,hope you got some food for thought and that your life finds salvation one way or another;don't know about you but only God know's how much more i can take of this..........Nick.

I had just joined this board yesterday, to try to get some answers about Fibromyalgia, and some other symptoms that I also have.
Then, last night, for no apparent reason, I woke at 4:00 a.m with pain in my neck and very bad pain on the right side of my head, I have never had migraines, and this was much more painful than a headache, it really scared me.
I took some advil, and also folded a pillow and pressed it against the back of my neck, and I fell back to sleep for an hour before getting up for work.
My vision was blurry last night, but I didn't really think too much of that because I do have some glaucoma.
However, I have had alot of blurry vision before and my opthamnologist said that he doesn't think that the glaucoma is causing that because the levels are not that high.
I also did feel a little nauseous, and couldn't understand why.
I too, have IB, depression, hard time concentrating , anxiety, alot of the same symptoms and tests as alot of you have had.
I am calling my new doctor to see if he has an appointment for this Friday, but in the meantime, I just wanted to post this because, it sounds similar to
some of the things that I have read here.

http://www.healthboards.com/ubb/biggrin.gif Hi, sorry to hear that you don't feel well. I went thru the same thing awhile ago, and i ended up in the hospital for a week. It was vertigo, or so they thought. it turned out to be Meiners ear. Or inner ear. I got violently sick and had to go by ambulance, i got sick all over the place. it was horrible, i couldn't walk for a week, never mind get out of bed! and the headaches were terrible. And the manuvers that they do for this made me even sicker. as soon as the doctor moved my head, i got sick. So I would suggest to go see a neurologist, and get a second opinion. And don't move your head around too fast. I had to learn to turn my head slowly and to sit up slow if i was laying down. i'm better now, and it hasn't returned. I wish you well and good luck an hope you find an answer. Lorrie from the US.

Hi could i suggest if you have MS symtoms to please rule out lyme disease. I was misdx with so many things and the drs. didn't know for sure.
Fibromyalgia, CFS, MS, thoracic outlet, tremors, clonus, bladder and bowel loss, severe head pain, carpel tunnel, brain injury and i could go on and on.
Turns out I have Lyme disease with co-infections, babesia, bartenella, and encepiltis of my brain.
You could start with a good Western Blot IgG and IgM
and if you think you have it see a lyme literate dr.
Also Igenex is the best labs i've found for testing.
Also a lot of people have been found to have a mycoplasma inf. with this.

I know this sounds confusing but i went 8 years with out an answer and all because of a tick bite.


[This message has been edited by moderator2 (edited 03-25-2002).]

I just read this whole strand because I've just been hit with related symptoms. I have had the feeling of trembling (though my hand doesn't shake) a sense that my head is filled with concrete and floating up and I need to lie down, a vise is being applied about 2" above my ears (not tight enough to be painful), and my thought processes stop briefly and then I have to fight to make them move even slowly. Also wrong words come out even though I'm only aware of thinking of the one I want to use, innocuous things like Monday instead of Tuesday, drawer instead of refrigerator. I had a couple of days of double vision (I watched the pair skaters in the olympics and there were 4 skaters). I had a list of blood tests, lots. Then an MRI which brings me to the question.

I expected a regular MRI that showed my brain. In fact the nurse practitioner made a comment that we could see if my sinuses were inflamed. Instead they did one that just shows major blood vessels. I gathered that ruled out cancer? Does anybody know? Also, given that we are looking for a source of a set of symptoms, shouldn't they have done a regular MRI showing brain tissue, etc.? Why would an MRI just showing blood vessels be done? I'm not really wanting to pay for it if I need to turn around and have another one done. I haven't been to a neurologist yet.

I did get the double vision cleared up by a Rolfer with a bit of cranial-sacral therapy training. She found my sphenoid bone fixated. Cranial sacral therapy looks to me to be a good first try for brain issues. At least there are no side effects. I'm trying to pursue both alternative and standard medicine. I suppose I could live with the pressure, but the lame brain is awful.

Just wanted to share some information. I started having problems with tingling and tremors. It was a scary feeling. The best description that I can think of is the way I have heard levitating described. Well I began to back track on when I had the first tremors. It was after I had eaten at a mexican restaurant and after that I noticed that the symptoms showed up after eating certain things.

Well I finally realized that I am allergic to MSG. So I try to stay away from anything with MSG. Just last week I found that almost everything in my kitchen had msg in it even smoke sausage. I also learned that manfacturers has given msg and alias and here are a few of them. For those of you that are not familiar with msg it is Monosodium Glucomate and also called hydrolized protein, yeast extract, glumate spartate, cystein and Hydro Vegetable protein to name a few and also soy protein concentrate. I have not had another tremor since I started reading labels and throwing out certain salad dressing and other foods. This may not be your problem but it was mine. When something change in our health we would be wise to look at changes leading up to the problems.

Hi there!
Sorry to hear of your symptoms Jon, but thank you so much for posting them! I have been having some of those for years after a diving accident when I was a kid, though I've never been to a doctor about them (guess I just thought that everyone got them!)
In a nutshell...I have chronic spine problems, especially in the upper neck. I have tingling and pins and needles all over, and numbness including the face, jaw, gums, neck, chin and scalp. Looking on the net I found that the trigemminal nerve can cause these symptoms if C1-C3 is injured. Though that doesn't explain the other things I get like: TV static/snow eyesight, with flickering like on a computer monitor, and lots of pinpoints of bright light and dark pinpoints. Also when I look at the floor it is rolling like ocean waves. When standing up after crouching or sitting I get a big wave of dizziness, like all the blood is draining from my head which feels really heavy. At the same time I get a roaring noise in the ears and my eyesight goes dark with black microdots. At the same time my heart just starts pounding for no reason. I have tinnitus all the time, and it is getting worse. It's pretty hard to hear at times, and when someone starts talking to me I can hear their first sentence but can't make sense of what they are saying and have to get them to repeat themselves. It's like I'm tuned out or something...kind of like they are speaking a foreign language. I'm also finding it hard to concentrate generally and feel like I'm really thick in the head. (which isn't very helpful for a University student) Also when I sit exams (3hrs) I feel really short in height when I stand up afterwards, lasting about 10 minutes. Same thing happens when I ride horses and jump off, I get dizzy, and can't see for a few minutes (black dots...heaps)
I also get this weird whole body shudder about once a week, like a giant shiver, and all the hairs on my arms stick up and I feel really chilled.
I get headaches and pressure in the head/face also, and the joins in my skull bones are really tender to touch. At times I wake up in the middle of the night with my heart racing/pounding for no reason, and can hear blood rushing/pounding in my ears.
Going to a neurologist in a few weeks for the spine problems....does anyone have any suggestions for tests I should be having? Could it be heart problems?

Take care everyone and best wishes! http://www.healthboards.com/ubb/smile.gif