Hi All


I'm feeling quite lost I have had a condition which my neurologists guess is Painless Migraine.

SYMPTOMS: I get a Vertigo like sensation when there are alot of people moving about like a busy office Foyer, or at a shopping centre, I have not driven for 6 months, as i get really light headed like a dizzyness and cannot concentrate it feels like i am in a movie. Have Trouble judging things sometimes like stairs. I constantly have visual snow (like the static on a tv) i get wiggly bubbles in my vision sometimes (this can amuse me for an hour )
I see flashes of light like a camera going off a couple of times a week and sometimes think something is running on the ground but when i look nothing is there. SHapes last in my vision quite a while after i have moved my eyes off of it. At night lights have a massive Aura around them, like a large foggy haze. (I think i got that all out sorry)


TESTS: I have had countless blood tests, a CT, 2 x MRI (Head and Spine), Balance test (the one where they put cold water in your ears), Spianl X-ray, Chest X-ray, and i have also been sent to a Optimologist and had various test completed such as Filed Tests completed, every one of these tests has come back normal.

After all this my Neuro put me on Epilim, which only made things worse, now he has put me on Sandomigran 1mg at night for the last month, it has helped slightly I don't have as much problem with people moving about but i still cannot drive, get my "Vertigo" sensations and see all the funny visual things still.

Has anyone had the same or similar? I am really lost where to go from here, I feel like my options are becoming exhausted, I have a 3 yr old little girl and cant drive her to day care, i also passed up on a really good job for the fact that i cannot drive and needed to.

Any responses are much appreciated.


Leah

((((((Leah)))))) <<-- those are HUGS!!

Oh, yeah -- visual migraines -- pain in the "A".

Mine weren't as bad as yours. I could still drive.

I had them for almost 10 years before they converted to 'regular' migraines (with pain). I now get 'regular' migraines about 4 times a year. Sleep and Excedrin Migraine usually takes care of it.

I used to sometimes feel l like I was bending over when I was standing up. The weirdest darn thing.

I couldn't stand the news crawl on the bottom of the television. Couldn't stand a commuter rail or a subway train or a bus moving across my field of vision -- I got real dizzy and felt like I was going to fall over. I was finally able to take the black duct tape off my TV. Very rarely something will move across my field of vision and I'll to close my eyes. And there are still some TV commercials that I can't watch because they move too fast.

My ophthalmologist is the one that discovered my problem. The only thing that he did for me (no medications) was slowly wean me from all caffeine.

I do now use caffeine -- Diet Cherry Coke -- I'm keeping them in business But, for all the time that I didn't use it, not having it in my system seemed to help.

Do you wear glasses?? If you do, make sure that the prescription is exactly accurate.

I know I'm not much help. Just wanted to let you know that someone read your words and understands.

I DO think it's a good idea to get off ALL the caffeine and see if that helps. Make sure your glasses are correct if you wear any.

You know, Leah, I love to do research (I'm good at it too). There's something in the deep, dark recesses of The Moose's mind about wearing a special kind of filtering glasses. I can't for the life of me remember where I saw it. If I find it again, I'll let you know.

Oh, if you do wear eyeglasses, find out about getting anti-reflective coating on them. That might cut down on the halos that you see at night.

Can you think of when this started?? You said you're a Mom. Did it start after delivery of a child?? Some think migraines are related to hormone levels. It might be worth a trial of a month or two on birth control to see if it stops the symptoms. But, then, you have all the other associated issues with taking that type of drug.

Oh, you might want to keep a food diary and see if you're eating anything 'chemical' like aspartame/MSG before one of these episodes.

Do you use a computer a lot?? Do fluorescent lights bother you??

Oh, one more thing: did they do an EEG?? http://jnnp.bmjjournals.com/cgi/content/full/66/4/536

Hugs.

Barb

PS: If I can find that thing that I saw about the filter, I'll post it.

Hi Barb,


It is sooo good to know someone understands and i am not going mental

I don't wear glasses infact i have 20/20 vision

Unfortunatly it wasn't co-insiding with the birth of my daughter. And as for the pill it used to give me the Pain Migrain, so i stopped taking it 4 years ago. It started around March this year gradually buiding up to get to this horrible point I'm at now. I passed all the symptoms off with all the excuses in the world, I'm tired, I didn't drink enough water, I drank too much coffee, but it gradually got worse till one day when i was driving I feared for everyone elses life with me behind the wheel and that was when i knew it was getting bad. Its been constantly bad since June, I haven't had a break for one day. I cut out coffee for a few months and did nothing so i went back to my one breakfast cup per day.

Flashing lights bother me, when i'm on the train and we pass through a tunnel it really gets to me i too close me eyes. Its the same when the sun is low and your in a vehicle and the shadows of trees etc flash past I cannot function when that happens.

I conceal it at work pretty well. Though people probably notice me starring off in the distance trying to rebalance my brain on a fixed object.

Funnythe other week, a saw some flashes and i asked a collegue who was taking photo's and they all looked at me like i was a lunatic

I will keep a food diary definatly, but its hard when i have this feeling from the moment of waking till sleeping.

No haven;t had an EEG, my Neurologist said it wasn't nessisary

Im back to see him on Thursday....

And Yes I am definatly interested in Filtering glasses so if you dig anything up let me know.

THanks for your Help

Leah

maybe its something you eat

do you eat aspartame? or hyrdrogenated oils?

Myofascial Trigger Points (knots) in the Sternocleidomastoid Muscle(S) in the the front to side of you neck may be part of your on going problems. There are two divisions the sternal and clavicular.in the front to side of you neck.

Trigger points in each division can evoke referred pain, autonomic phenomena or proprioceptive disturbances.

Pain can be felt above the eyes (optical migraine), in ear, cheeks, to the throat, back and top of the head.

Autonomic phenomena from the sternal division involve the eye and sinuses, while the clavicular division are more likely to concern the forehead (sweating of the forehead on the same side) and ear (vertigo), including dizziness related to disturbed proprioception and spatial perception.

These symptoms seem to match a large portion of you're posted problems

Do you have a reoccurring droopy eye(s).

The motor nerve fibers of the sternocleidomastoid muscle have an unusually close association with the brain stem. They pass through the cervical portion of the cranial nerve XI (accessory nerve). These motor fibers of the cervical portion arise within the spinal column from the ventral roots (motor fibers) of the upper five cervical segments and ascend, entering the skull through the foramen magnum to join the cranial portion of the accessory nerve. Together, they exit the skull in close association with the vegas nerve through the jugular foramen.

Trigger Point therapy may help resolve your symptoms and function.

There is a web site you may be interested in reviewing:
http://www.round-earth.com/HeadPainIntro.html

click on the SCM (Sternocleidomastoid) section and read on how to stretch and treat this muscle.

Best Wishes!

Sorry that you are feeling so bad.

No neurological exam is complete without checking B12. It is important to get a copy of the report because "normal" is far from "optimal". Here is a link to the symptoms of B12 deficiency from OBT. I could not find this on BT2. http://216.239.51.104/search?q=cache...s&ct=clnk&cd=4

Rose is our B12 expert and there is information on the Vitamin forum of BT2. Her website is under construction: http://roseannster.googlepages.com/home

Have you had your heart checked? Apparently a hole that should have closed at birth can be related to migraine aura.
High prevalence of patent foramen ovale in migraine with aura

Were you or are you a SCUBA diver - apparently those with PFO can get inner ear problems.

Dizziness does not seem to be a symptoms of this PFO but it can be a symptom of atrial fibrillation. http://www.nlm.nih.gov/medlineplus/e...cle/000184.htm

Keeping a food diary is a good idea but it is difficult. One problem is most people eat some foods every day. Examples are dairy, corn, wheat, caffeine, soy...oh yeah, and chocolate . If we eat something everyday it is impossible to tell if it is causing a reaction. If you want to explore food triggers, it is better to totally eliminate the more common ones and then add them back in verrrrry slooowly. You not only need to eliminate the foods that obviously contain the possible allergen, but you will also have to read every label and be sure it is not a hidden ingredient.

If you are interested in how to do an elimination diet, I am sure that Kim on the Gluten Sensitivity/Celiac Disease forum would be happy to help you. She has lots of experience with elimination diets.

Here is one article that lists some of the common food triggers. It would not surprise me if soy would be added to this list if this article was written today. I doubt that food processors were using as much soy as they are now.
I do hope you get to feeling better.
Anne

Without reading all the posts I will add my 2 cents. A friend of mine discribed similar symptoms. She lives in Au. spends a lot of time in the water. It was an inner ear problem..........went on for a couple of years then improved some.

Thanks for all your feedback it is most appreciated

I haven't ruled out B12, though i do take multi vitamins every and being an Aussie eat plenty of Vegimite which is packed with B vitamins appartently. But i will definatly look into...

As for my heart, I have had that checked, Ultrasounds, ECG, and hooked up to various machines for 24 hours, when i was in hospital a few months ago. And everything was fine.

They checked for BPPV in the CT and couldnt see anything wrong. Though i would not rule out my ears personally, when i asked my Neurologist he said he didn't think that needed further exploration. Think i need a new Doctor but he is appartently the one best in Sydney so my GP tells me

I have started the food diary, The Sandomigran has made me put on weight I've never had any weight problems before so this is new to me to have to consider what i put in my mouth, though I was always classified as low weight for my height so i should enjoy being in the normal range for a while.
I can't wait to go back to Gymnastics and dancing, its seems like i have been out of action for so long, I just can't do it now last thing i wasnt to do is get disorientated mid air and break my neck

I have a referral to another Neurologist if I dont get anywhere with my Neuro.

I like the visual seizures theory, sometimes it's like my brain cannot keep up with everything, I just excuse my self and make a blonde joke about myself


Leah

Hi Leah. So sorry for the suffering you're experiencing. It sounds very much like you may have a vestibular (inner ear) disorder, despite what the docs said in the hospital. The migrainous symptoms in particular may be what is known as MAV (Migraine Associated Vertigo) and the type of doctor that you need to be seeing is a neurotologist, which is a neurologist who specializes in diseases of the ear. They are the only ones who will have the sophisticated equipment necessary to make the diagnosis as to whether or not your vestibular system is compromised. If you're interested in doing some research, two of the best websites are:

http://www.dizziness-and-balance.com...ers/index.html

http://www.vestibular.org

That last website will also give you names of physicians in your area who may be able to help you with your problem.

Best of luck to you. I've had a vestibular disorder due to head trauma for the past 21 years and it ain't no fun, I know!!
Joanne

Hi Leah,

Sorry I can't help but wanted to say how sorry I am. That must be so aggravating, with all the symptoms you are having and also not being able to drive.
I hope there is something that can be done for you.
Take care,
Linda