Lost In Space! - Need Support Plse

[brainzap]

I'm a newbie and think I put my first post in the wrong place, so..........trying again.
Was quite normal up until eighteen mnths ago than had SEVERE inner ear infection alongwith extreme vertigo and severe pain in head for weeks and weeks. (had meningitis 25 yrs ago, so am very away of head pain). Generally not susceptible to headaches. I've been unable to 'view' things in a normal manner since, as I feel like I'm literally in another world Can see everyone but I'm totally disconnected. If I get one 'semi normal' day a week then I'm doing great! Continual feeling of 'electrical interference' at back of my head and extremely loud noise in various parts of head. Total exhaustion after communicating with anyone. Can't cope with more than one person at a time. Too difficult to concentrate. Have become extremely sensitive to sound. Tongue has begun to go numb recently and have difficulty getting words out at times. Other symptoms as well, but all I'm seeking right now is support. Doing everything in my power to prevent a major stroke. Latest TIA (transient ischemic attack) was 3 weeks ago. Taken to hospital. MRI states small vessell ischemia. Not into taking drugs and have a really healthy diet. Use to do a lot of exercise, now very limited. Any clues as to cause anyone? Would like to contact someone having similar experiences. Don't know where else to turn to nor what to do anymore.

[uvamomb]

I don't have much experience with stroke. But, the difficulty with words and the pain and sensitivity to noise, could point to Fibromyalgia. I do hope you've been to your primary care doctor and whoever has taken care of you when you had your strokes.
Good luck to you in finding answers, and please take care of yourself. Please get in to see both doctors ASAP.
Hugs and God's blessings to you,
Kathy

[annelb]

Sorry to hear that you are having such problems.

What blood tests have you had? Have they checked for coagulation problems? Have they checked ferritin, B12, folate, homocystine, hsCRP, sed rate, PT, PTT to name a few? There is also a coagulation panel - here is one from MGH http://www.massgeneral.org/pathology/coagbook/CO003000.htm

Are you on any medication, vitamins or supplements? What is your definition of a "healthy diet"?

It is important to get copies of lab tests and not just a verbal "everything looks ok" or "everything is normal". The "normal" levels of some tests are questionable. An example is B12. "Normal" is set about 200 but some doctors feel that the level should be at least 550. I have been told that a certain test was going to be run, but when I got my results, the wrong test was run or the test was omitted. If you get copies of your labs, you can follow rising and falling levels.

Anne

[rose]

I agree that it is crucial to get copies of your labs.

Also, I suggest you do some reading on the vitamin deficiency forum here: I would concentrate of learning about Omega 3 and other fats, and the other subjects just mentioned by Anne.

rose

[mamamakk]

Have you been worked up for vasculitis? Many of your symptoms sound like vasculitis. There are many types so it would be hard to pinpoint one without knowing more about you.

Vasculitis is rare but you can find good info on it from several sources on the internet. Cleveland Clinic is considered one of the best hospitals for diagnosing and treating it. Some types are primary and are a disease unto themselves and other types come on as secondary issues from diseases like lupus or diabetes.

Some of the types are CNS vasculitis, Moya-Moya, Giant Cell Arteritis, Wegner's Granulomatosus, and Polyarteritis Nodosa. Vasculitis is inflammation of the blood vessels that can lead to strokes, damage to organs, severe headaches, fevers, weight loss, cognitive problems, etc. It can be difficult to diagnose and it is often mistaken for other things such as a stroke or MS.

[mickeysblog]

Hey Brainzap,
I am taking a shot in the dark here, but there is a rare disorder called Cogons, as well as Wegeners Granulomatosis. Both are quite serious but treatable. If it is MS get your Vitamin D level checked. If it is low, below 30 you may have to get on a script form of D. Have you had an MRI of the brain? Checked for mini strokes?

Good Luck, Peace Out

Mick

http://www.medicinenet.com/wegeners_granulomatosis/article.htm


http://www3.niaid.nih.gov/healthscience/healthtopics/wegener/symptoms.htm

http://www.medicinenet.com/rheumatoid_arthritis/page3.htm

http://www.dizziness-and-balance.com/disorders/autoimmune/cogans_syndrome.htm

[maridane]

Just a thought but have you had an MRI of the head/neck area to check for Arnold Chiari Malformation 1?
Go to www.thechiariinstitute.com and check out the videos that Dr. Bolognese has done on a great many issues of and relating to Chiari. Good Luck, Marilyn

Also you may want to check out the symptom list at: www.chiarione.org