chronic dizziness and tingling in vision

[ac]

212 Belmont Avenue
Wilmington, DE  19804
[phone]


August 3, 1999

Robert Abel, MD
3501 Silverside Road
Wilmington, DE 19810

Dear Dr. Abel:

I am a 31 year old female and have been experiencing a constant sensation of dizziness (a swimmy-headed feeling) since May 1998 that feels very visually-oriented.  I have also been experiencing a constant "tingling" aura in my visual field for at least the past nine months. I liken it to the "snow" one sees on a television screen when the cable goes out.  Even with my eyes closed, I can still see the snow.

In addition, I feel perceptually disconnected, almost dreamy.  My eyes seem to have difficulty interpreting stimuli properly, especially when up close or excessive.  It sounds odd, but my visual pathway feels overloaded.  Also, when I use my vision to actively search, i.e., scanning for someone in a department store, my eyes feel extremely nervous and overwhelmed.  Finally, when I use the computer, I can sometimes see the screen oscillating.  Fluorescent lights sometimes seem to pulsate.  The only thing that alleviates my symptoms is closing my eyes and pressing firmly on my eyelids.  This seems to calm the sensation of ocular excitation and/or overload, and dizziness.  

I have had numerous tests and seen many doctors, but still have no answer as to why my symptoms persist.

When the dizziness fist began in May of 1998, I also had a sensation of fullness in my right ear.  Initially, I saw my PCP and he ordered an EEG, MRI and various blood tests including B12, anticardiolipin antibodies and ANA.  All tests were normal.  He prescribed Antivert, but it did not help my symptoms.  He then referred me to an ENT.

From July through November 1998, I had otologic work-ups by two which included ENG, ABR, ECOG and multiple audiograms.  All tests were normal.  My doctor ordered Diamox and short-term Prednisone therapy, but neither helped my symptoms.  I even tried Vertigoheel, a fairly new homeopathic medicine (listed in the PDR), but that did not work either.

In December 1998, my ENT referred me to a neurologist.  After examining me, he thought my symptoms were more inner-ear related than neurologic.  He referred me to a neuro-otologist at the Hospital of the University of Pennsylvania.  

I saw the neuro-otologist in January 1999 and he thought my symptoms were more neurologic than inner-ear-related.  He prescribed Dyazide and Clonazepam. Neither helped my symptoms.  He also ordered a Lyme titer and other bloodwork.  Everything was normal.

In February, my PCP spoke with another neurologist on my behalf.  Based upon their conversation, my PCP ordered Nortriptyline because this sometimes helps with seemingly obscure neurologic symptoms.  I took this drug for a month, but it did not help.

Since I have been having the aforementioned visual symptoms, I was referred to a neuro-ophthalmologist at Wills Eye Hospital in June. He ordered VER testing, an MRI of the optic nerve and an MRA/MRV of the head with special attention to the circle of willis and sagittal sinus.  He also repeated the Lyme titer and anticardiolipin anti-bodies.  Every test yielded normal results.  

I decided to stop taking Penicillamine (for cystine kidney stone prevention) 2˝  months ago thinking this may be causing my symptoms.  So far, there has been no improvement in my symptoms. I even asked my nephrologist to change my blood pressure medicine from Inderal to Captopril to see if this might be causing my symptoms.  That was about six weeks ago and my symptoms continue.

In addition to the symptoms I mentioned, I also experience:
· achy eyes daily
· intermittent tingling on my scalp and temporal regions of my head
· a pulling sensation on the back right quadrant of my scalp
· decreased concentration
· decreased memory

I am very frustrated at this point.  What else is there?  I have not had a lumbar puncture because my doctor does not think this is MS.  Could it be a vascular compression on a nerve that cannot be seen on MRI?  Could one have Lyme in CNS, but not blood?

[CCF Neuro[P] MD, RPS]

Dear AC:

Sorry to hear about all your trouble.  It is very good that your MRI was normal, and that all of your tests are essentially normal.  I know this is little relief of your symptoms.  Your symptoms, together with the normal MRI indicate that it is very unlikely that you have MS.  The negative studies by the ENT suggest that your problem is not inner ear.  

Now, I am purely guessing from your symptoms and negative tests.  I do not know what you have but I can offer a few suggestions.  There is a migraine variant called "Alice in Wonderland" migraine variant.  In this disorder one gets visual changes, perception difficulties, without headache.  Usually this disorder is episodic and not constant as you describe.  The usually migraine medications usually take care of this disorder.  Although you have been on nortryp. it would depend on the dosage if there would be any effect.

The second thing that might be occuring is a paraneoplastic syndrome.  I would check for the antibody Ri as it can influence the visual system.

Sorry for the little help I could manage.

Sincerely,

CCF Neuro MD

[marc]

Further to the suggestion of the CCF Neuro and the possibility of Alice in Wonderland-aura, also called Macropsia, I can tell you that you can visit a website where you see all the visual disturbance aura visualised.
Go to
http://www.maelstrom-vp.com/aura.htm
and maybe one of the aura is about the visual disturbance you have.
Wish you all the best

[CCF Neuro[P] MD, RPS]

Thanks for your comments marc.

CCF Neuro MD

[ac]

Marc,

Thanks for taking the time to let me know about this site.  I will definitely check it out.  Take care.

[ac]

CCF, MD:

Thanks for sharing this information with me.  Alice in Wonderland is a perfect analogy for how I feel.  Could someone be caught up in this state - say if a nerve was injured or compressed during a migraine event?  I do get migraines.

The paraneoplastic syndrome antibody test - is that a blood test or CSF test?  Does paraneoplastic syndrome always mean that there is malignancy somewhere else in the body?

Do you think a lumbar puncture might be helpful?

Again, thank you so much for your response.  I do appreciate it.

[CCF Neuro[P] MD, RPS]

Good luck.

Sincerely,

CCF Neuro MD

[CCF Neuro[P] MD, RPS]

Dear AC:

The paraneoplastic syndromes are when the body is producing antibodies against a tumor.  The antibody somehow sees brain tissue as the tumor and begins to react to it. Usually, if present, they represent the early signs (up several years) of a tumor.  These are found in the blood.  No, at this point there seems to be no signs that a LP is needed.

Sincerely,

CCF Neuro MD

[Paige]

ac,
after a reaction to a vaccine back in dec. i have been experiencing many of the same visual symptoms you've described.  i have had the full neurological work-up, including, many blood tests, 3 MRIs, spinal tap, EMG, exam by neuro-opthamologist--all normal (aside from a slightly elevated ANA level that my mom and sister both have)....due to my illness, i became extremely anxious and depressed. it was thought i had MS, a tumor, lupus or some other dreaded disease at first.  as the months went by, i became practically immobilized by depression and worry. i finally sought help from a psychiatrist who put me on an anti depressent. this has helped clear my head a great deal, but i sill have trouble visually.  i am very sensitive to light, particularly artificial lighting. and i have trouble focunsing when looking up or at things far away.  at this pt. i have no idea what to do but wait and pray the subside like the rest of my symotoms. but i wanted to let you know that stress and anxiety can cause lightheadedness and visual disturbances.  good luck and keep us posted. if you want to eamil, i can be found at ***@****

[CCF Neuro[P] MD, RPS]

Thanks for your comments.

CCF Neuro MD

[Adam]

Hi

I had almost identical symptoms for almost a year and a half -- they were hell. It sounds strange, but in the end I found my problem was sinus-related. I was prescribed some steroid-based nasal spray, and later had sinus surgery and my vision problems, dizziness and that feeling of being distant from everything has all cleared up.

I hope that helps.

Adam
***@****

[Adam]

Hi

I had almost identical symptoms for almost a year and a half -- they were hell. It sounds strange, but in the end I found my problem was sinus-related. I was prescribed some steroid-based nasal spray, and later had sinus surgery and my vision problems, dizziness and that feeling of being distant from everything has all cleared up.

I hope that helps.

Adam
***@****

[CCF Neuro[P] MD, RPS]

Thanks for your comment.

CCF Neuro MD

[Carol]

Please carefully review the site Carbon Monoxide HQ on the internet!!  Especially the Chronic CO sections. PLEASE

[CCF Neuro[P] MD, RPS]

Thanks for your thought.

CCF Neuro MD

[DENISE]

wow, this is like finding a twin.  i have had many of these symptoms, the drawing down of the scalp feeling, i currently have chronic dizziness, for six months now.  all the tests were normal except my FSH, which i am currently taking premarin for.  the doctors tried the antivert, clonazapam, antibiotics.none of these drugs made any difference.  due to the anxiety created by this condition i am taking prozac, which has helped me be calmer.  but nothing has truly been diagnosed.  i saw a neurologist, a neuro-otologist, an otologist, and a highly recommended internal medicine doc.  the consensus has been anxiety.  i was referred to a psychiatric nurse practioner, who agreed that this was not anxiety caused.  i am at a loss.  i am unable to drive, for obvious reasons, and have had to reduce my work hours.  i hope it goes away soon, or it hurries up and develops into whatever it really is, so i can get on with my life.  i am always dizzy, but in a car or bus i get very dizzy, and it is especially bad at night, like the road is coming right into my head.  the dizziness is inside myself, not external, the room doesn't spin.  all the appropriate tests have been done.  any suggestions??????

[CCF Neuro[P] MD, RPS]

Dear Denise:

Since all of your tests, MRI, EMG, EEG, lab work, spinal tap, etc are normal, I am not sure that I can recommend anything.  It sounds like you have done the appropriate things.  I wish I had an answer.

Sincerely,

CCF Neuro MD

[John]

I too have many of the symptoms that ac and the rest have listed, but more along the lines of dizziness and lightheadedness than the visual imparement.  I have had one incidence (a couple of years ago) of visual distrubance very similar to "Fortification Spectra" from the maelstrom-vp.com site suggested by marc.  My symptons are also similar to Monica's post on April 15, 1999 "Chronic lightheadedness" without the sinus infections.  I do have seasonal allergies (hayfever).  I am a 36 yr old male and have had this condition (in varying degrees, but always present) for five or so years now.

I am generally healthy, but with borderline-high blood pressure.  I have been on both beta blockers and calcium channel blockers in an attempt to clear up my dizziness (but not to reduce my blood pressure).  I have had an MRI to check for MS, a rotary chair test for inner ear, and an EEG - all normal.  I have been to an ENT Dr. and those simple tests (hearing, eardrum pressure, etc.) were also normal.  I have been to my optometrist to be sure my eyes were OK.  They were.

Recently I have been having mild headaches in my temples to add to my dizziness as well as some occasional slight tingling in my extremities.  I am often sleepy during the day, even after sleeping well that night.  My symptoms often make me very irritable and short tempered.  

I have not been able to determine a correlation of my symptoms to either body position (lying, standing, quick head movements, etc.), or the things I eat although, as with Monica, if I have not slept well or eaten recently it seems to be worse.  Sugars and caffine seem to make it worse, but that is not definative.  Excersize (stationary bike, competative volleyball) does not make it better, but occasionally it does make it a little worse.

OK, finally my question...what doctors, tests, etc. would you suggests next?  I will be seeing my PCP in the next few days and will be discussing the suggestions that I have found on this post and the previous one from Monica.  I am relieved to find these posts in that it gives me other alternatives to explore.  All my doctors (PCP, neurologist, ENT, etc.) have told me the same thing when asked what I should do next: "I don't know" and needless to say I am getting tired of that answer and my constant dizziness.

Thank you

[CCF Neuro[P] MD, RPS]

Dear Greg:

I am not sure what to add.  Have you had your sleep evaluated by a sleep expert?  Chronic hypercapia can give you lightheadness, daytime sleepiness, and a bad-hair sort of day.  Second suggestion might be to investigate an ocular induced vestibular problem.  This is sort of high-tech and requires a special lab.  There are several centers around the country: Harvard, Cleveland Clinic, UCLA.

Sorry, not much to add.

Sincerely,

CCF Neuro MD

[ujdy]

Go back to another otolaryngologist and ask about vestibular testing . I came out of the world you describe last year !!!    

[CCF Neuro[P] MD, RPS]

thanks for your comment.

CCF Neuro MD

[Marty]

Hello. I am currently experiencing something quite similar. The majority of my symptoms are the feeling of "sitting back and watching it happen" almost as if everything is a movie or something. I also experience, almost once a year, a "white out". It starts as blotchy vision, like zig-zag lines, then eventually, over about 2 minutes, i completely lose all vision and experience the "white out". It lasts for about 10 - 20 minutes, and then goes back to normal.  I have had these symptoms for quite some time now, almost 10 years. I have seen neurologists and doctors regarding my situation, but nobody can seem to find anything wrong with me. It's something I have pretty much adapted to and learned to live with. I would be absolutely thrilled if I could find out what it is, and how to treat it.

[CCF Neuro[P] MD, RPS]

Dear Marty:

With the brief description it is impossible to give you an answer.  But things that repeat themselves by symptoms that are uniform are usually in the category of epilepsy or migraine headache.

Sincerely,

CCF Neuro MD

[Marty]

I have had epilepsy in the past (when I was 6 yrs old till I was 12) and trated it with Dilantin (sp?). According to the doctors at the time, i was over it. Could this be related to my symptoms?
Thank you kindly. Marty

[CCF Neuro[P] MD, RPS]

Dear Marty:

I can not tell you that over the internet.  I would see your neurologist and see if this may be a contribution to your problems.

Sincerely,

CCF Neuro MD

[Forification Spectra/Spot blindness/Ting]

Hello everyone. I was just to a walk-in clinic, and the doc there told me what I had was probably a "complicated migraine". I had been freaked out because I thought that I had had a TIA.

First time I had this happen to me was when I was 20 yrs old. I was at a lap-top computer and experienced a "fortification spectra", and then these things turned into a spot blindness, where parts of my field of vision disapeared. Making it impossible for me to read. Then I had the weirdest total body symptoms, and funny feeling in my head, followed by a strange head ache. I could not drive, had a friend drive me home, and spent the rest of the day & night in a dark room, unalbe to sleep.

Then I did not have one again. But this last year (I am 24 now), I've had 3 (I think it's been 3. I just had one today. I was in the grocery store, and ran out, to get home before I would be unable to drive.

The one the second before this one today spurred me to go to the doctor. Started with the "fortification spectra" which was on the right part of my field of vision, then the left side of my head started feeling wierd, and aching in a strange way (not hurting too badly..) after a while (I had laid down in bed), the right side of my face & then my right hand (finger by finger, starting with thumb) went tingly. By this time, I panicked, and deciding to call someone, I forgot my boyfriend's name. Later, I noticed I was very cold..

That worried me. My memory has been shakey, and my spelling & typing HORRENDOUS.

Was trying to think of what could be causing this, and the only thing that I have been doing differently lately. I have been working out daily at the gym. Which I did not do before..

Once when I was a kid (6 or so years old), I became temporarally paralysed and noone could understand why this had happened. Happened out of the blue one day, went to music class, and could no longer walk by the end of class. This was the same time I had my eyes checked because I had suddenly had problems seeing the blackboard in school, my eyes were tested, nothing wrong with them was found.

The only other strange thing happening that I can remember, is once when I was 15 yrs old, the right side of my face went numb suddenly, starting with my tongue.

I have a hearing loss, it was 65 db loss over two years ago..

Does this sound familiar to anyone?
Thanks for reading my drivel!

A. Sleep
(***@****)

[Cheryl]

I am another victim of dizziness.  I have often explained the dizziness as "the feeling you get when you shut your eyes and roll them towards the back of your head".  It comes in waves, a whoosh....whoosh feeling I get constantly in varying degrees.  Especially bad is at night when I try to sleep, then the "waves" keep me awake for hours.  I need to drink warm milk and take two gravol before bed every night.  I get palpitations at night as well and feel shaky quite often.   My vision sometime blurs which started after a car accident in May 1997.  The dizziness didn't start until February 2000.  Could the accident have something to do with this?

I've been to various doctors as well and I too am getting quite sick of the "I don't know" answer.  I have had blood tests but have yet to get an MRI.  I REALLY DON'T WANT TO LIVE LIKE THIS.

Also, could this be hypoglycemia?  I cannot eat sugar without feeling really sick but every time I suggest something like this to my doctor he dismisses it.

I have also noticed that if I take 4 extra strength sudafed a day I don't get as dizzy, but doctors have told me this is not ear related as I don't have hearing problems and "everything looks ok".  Could the sudafed be a placebo for me or does this sound like anything to you?

Please email me with info....look_bunnies***@****
THANK YOU!

[Cheryl]

I am another victim of dizziness.  I have often explained the dizziness as "the feeling you get when you shut your eyes and roll them towards the back of your head".  It comes in waves, a whoosh....whoosh feeling I get constantly in varying degrees.  Especially bad is at night when I try to sleep, then the "waves" keep me awake for hours.  I need to drink warm milk and take two gravol before bed every night.  I get palpitations at night as well and feel shaky quite often.   My vision sometime blurs which started after a car accident in May 1997.  The dizziness didn't start until February 2000.  Could the accident have something to do with this?

I've been to various doctors as well and I too am getting quite sick of the "I don't know" answer.  I have had blood tests but have yet to get an MRI.  I REALLY DON'T WANT TO LIVE LIKE THIS.

Also, could this be hypoglycemia?  I cannot eat sugar without feeling really sick but every time I suggest something like this to my doctor he dismisses it.

I have also noticed that if I take 4 extra strength sudafed a day I don't get as dizzy, but doctors have told me this is not ear related as I don't have hearing problems and "everything looks ok".  Could the sudafed be a placebo for me or does this sound like anything to you?

Please email me with info....look_bunnies***@****
THANK YOU!

[Cheryl]

I am another victim of dizziness.  I have often explained the dizziness as "the feeling you get when you shut your eyes and roll them towards the back of your head".  It comes in waves, a whoosh....whoosh feeling I get constantly in varying degrees.  Especially bad is at night when I try to sleep, then the "waves" keep me awake for hours.  I need to drink warm milk and take two gravol before bed every night.  I get palpitations at night as well and feel shaky quite often.   My vision sometime blurs which started after a car accident in May 1997.  The dizziness didn't start until February 2000.  Could the accident have something to do with this?

I've been to various doctors as well and I too am getting quite sick of the "I don't know" answer.  I have had blood tests but have yet to get an MRI.  I REALLY DON'T WANT TO LIVE LIKE THIS.

Also, could this be hypoglycemia?  I cannot eat sugar without feeling really sick but every time I suggest something like this to my doctor he dismisses it.

I have also noticed that if I take 4 extra strength sudafed a day I don't get as dizzy, but doctors have told me this is not ear related as I don't have hearing problems and "everything looks ok".  Could the sudafed be a placebo for me or does this sound like anything to you?

Please email me with info....look_bunnies***@****
THANK YOU!

[try physical therapy for dizzness]

i have suffered from dizziness over the last few years. Recently discovered inner ear problem but also a neck injury (soft tissue) was also a source. Physical therapy to calm the muscles in my neck keeps me from having so many dizzy spells.

[LindaQ]

As a newly diagnosed complicated migraine patient, this is my first internet searching session on the topic.  Thanks to all of you who have gone before and assured me my situation isn't unique, and I'm not making all these apparently unrelated symptoms up in my head.

I've tried the aura site at http://www.maelstrom-vp.com/aura.htm, only to be told in no uncertain terms I am FORBIDDEN to view the site.  Anyone know why?

[LLW]

LindaQ,
The website address given does have a problem, but I was able to reach it at the following link:
http://www.maelstrom-vp.com/g_symptoms.htm