Unexplained Shooting pains, with fainting, and nystagmus

[pinkslippers00]

When I was 18 I began near fainting when standing too long or standing up too quickly.  Then I started have severe shooting pains.  They occur all over my body, and are excrutiating and go from shooting to severe aching, back to very sharp pains.   Two years in I developed Nystagmus, that is triggered when I am lying supine, or reading, or watching tv.  When I have attacks they go in 4-5 month cycles.  I will go several months symptom free and nearly forget I was having problems.  Then it will hit all of a sudden.  I will begin to feel faint very easy, the pain begins, the tingling begins, the discoordination begins, the nystagmus begins.  It will last several months and I have symptoms daily.  It is always more severe around my menstrual cycle, and throughout the 4-5 month cycle I become very uncoordinated, and have problems with simple tasks such as counting, or speaking coherently (I often shut my hand in the refrigerator door or trip over the rug)  SO FAR...this is what I have been told by doctors....

-possible MS, but no lesions  or other abnormalities on MRI
-Tested positive within 2 minutes of being upright on tilt table...then diagnosed me with Neurocardiogenic Syncope (which explains nothing but the passing out)
-EEG had spike in left side of parietal lobe, however the doctor didn't know what to make of it, suggested possibly epilepsy as a result of a damaged area due to past injury (however I have never had a severe head injury and I have never had a seizure to my knowledge)
-EKG showed slight abnormality and doctor was concerned enough to send me to hospital for a week of cardiac testing....no other test results were positive and cardiologist said the abnormality on my EKG was common for girls my age, and wouldn't effect my health.
-was on Topomax, helped pain a little, but had too many side effects, I went off the medication with my doctors approval and was fine for about 6 months and now all of my symptoms have returned.

I'm really tired of being embarrassed because I can't talk right, and not being able to sleep all night because it feels like someone is stabbing my ankle, but what I am most tired of is dealing with specialists that never seem to think the things I'm feeling are legitimate.  If anyone has any thoughts or know of any specialists in the Indianapolis area that they think might be helpful I would really appreciate it.

Thanks so much for taking the time to read!

[Bhupinder Kaur, MD]

Hello,

There can be several possibilities for your symptoms. For syncope/fainting to occur, either the reticular activating system in the brain needs to lose its blood supply, or both hemispheres of the brain need to be deprived of blood, oxygen, or glucose.
So it can be due to fall in BP, hypoglycemia, dehydration and inadequate electrolytes(sodium and calcium) in the body, postural hypotension, blockage of arteries supplying blood to the brain esp. the carotids,anemia,vasovagal attacks or underlying neurological conditions.

Muscle twitchings are found in acid-base imbalance in the body,low sodium,calcium and vit D deficiency,Alzheimer’s disease,muscle fasciculation syndrome(a disorder of the nervous system characterized by the uncontrolled twitching (fasciculation) of muscle groups in various parts of the body),Motor neuron disease like ALS,chronic fatigue syndrome,hypoparathyroidism,spinal muscular atrophy or spinal neoplasms and spinocerebellar ataxia.

Pls discuss the above possibilities with your doctor and do keep us posted on how you are doing.

[pinkslippers00]

OH, I also forgot I get muscle twitches too.  They will be constant all day, just migrating from one area to another.