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.
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).
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.
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.
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 .
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.
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.)
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!
[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.
[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.