So, I managed to stump my new neuro today

[Tharrell]

I messaged an update of symptoms to my new neuro. I have been having great difficulty explaining my head symptoms so they would make sense to her. I came up with things like dizzy that is not vertigo or positional, nothing rotating inside me or visually outside, hamster running around my head, flying through a storm cloud and the roiling clouds that you see is what my head feels like and finally out of desperation it feels like I smoked a lot of pot in one go which I tried a very long time ago as a teenager. Still not much luck, but it did get her to start testing me.
So anyway, my update was this. Last Saturday while shampooing my hair I noticed an increase of activity in my head. When I started to soap up using a scrubby all over my body I had to stop and sit down, because the roiling in my head dramatically increased. I told her that if I rub my body anywhere the symptoms increase, but I'm ok with a firm touch.
She told me my symptoms really puzzled her and she knows of no neurologic condition that would affect the whole body and translate to the brain and to wait for the rest of the tests.
My next comparrison I a came up with is one of those balls with electricity, when you touch it the lightning follow your hand? My head feels like my brain is inside that ball.
Does any of this make sense to any of you? Because this is to me the most debilitating symptom I had to deal with since the beginning six month ago and caused the most absences from work. I am hoping that one I am on the full dose of pamelor the symptoms will lessen.

[Cassi307]

Are there any medications that you are on that may be causing these symptoms as a side effect?

Keep a log as to when the symptoms start and when you take your meds. Sometimes it could be caused by 2 meds that don't work well together. I think there is a web site called drug checker that lets you list your meds to see if they might cause symptoms.

Hope that you find the root of the problem soon.

[Tharrell]

Nope, not meds, this was my very first symptom with the impetigo that started this. Never been on long term meds before this. I'm already cleared for everything with ENT. Maybe my auonomic testing will show more results. Already vitamin D and B6 deficient, ss b positive, celiacs and maybe migraine aura, no lessions on the brain. Normal thyroid. Like I said, I stumped her for now, but I think she will figure this out after the rest of my tests come back.

[Tharrell]

Wore EEG for three days straight, everything normal. Been taking D3 since March I think. May have to retest it to see. Been on pamelor for less than a week. I am hoping that on e I move up to two pills a night it will quiten things down for me.

[lighthouse33]

I wonder if it could be what is talked about below?

http://www.mayoclinic.com/health/dizziness/DS00435/DSECTION=causes

Other dizzy sensations such as floating, swimming or heavy-headedness
Other "dizzy" sensations that are more difficult to describe may include feeling "spaced out" or having the sensation of spinning inside your head. Your doctor may refer to this as nonspecific dizziness. Some causes include:

Medications. Blood pressure lowering medications may cause faintness if they lower your blood pressure too much. Many other medications can cause nonspecific feelings of dizziness that resolve when you stop the medication.

Inner ear disorders. Some inner ear abnormalities can cause persistent, non-vertigo-type dizziness.

Anxiety disorders. Certain anxiety disorders, such as panic attacks and a fear of leaving home or being in large, open spaces (agoraphobia), may cause dizziness. Sometimes one cause ? such as a vestibular disorder ? may produce symptoms, but then anxiety causes your dizziness to persist even after your inner ear problem has resolved.

Low iron levels (anemia). Other signs and symptoms that may occur along with dizziness if you have anemia include fatigue, weakness and pale skin.

Low blood sugar (hypoglycemia). This condition generally occurs in people with diabetes who use insulin. Dizziness may be accompanied by sweating and confusion.

Ear infections. Sometimes, ear infections can cause dizziness. This type of dizziness will go away when the infection clears up.

Overheating and dehydration. If you're active in hot weather, or if you don't drink enough fluids, you may feel dizzy from overheating (hyperthermia) or from dehydration. This is especially true if you take certain heart medications. Resting in a cool place and drinking water or a sports drink (Gatorade, Powerade, others) will usually help ease the dizzy feeling.

Chronic subjective dizziness. This is a specific clinical syndrome characterized by persistent nonspecific dizziness that doesn't have an obvious medical cause. Chronic subjective dizziness is associated with hypersensitivity to one's own motion. This type of dizziness is made worse by complex visual environments (such as the grocery store), visual motion (such as a movie), visual patterns and precision visual tasks.

[jazzlover]

Are you SURE that "impetigo" was not a Lyme rash? Lyme can cause weird brain stuff.

[Tharrell]

Lighthouse: wow thanks! Everything is no, but the last one! I think that may be it! I always felt my eyes are somehow to blame for this, because my brain over reacts what my eyes see! I will look it up and send my neuro the suggestion right away.

Cassie, no side effects because it started long before longterm meds.

Litliwlowa:I don't know when they test vit. D again. Doctor gave me pamelor and told me to take B2 voor possible migraine auro ( migraines without headache) Waiting for appointment to do MRI of c-spine and autonomic testing.

Jazzlover: Amazingly none of old doctors thought to test me for lyme disease, but my new neuro did. Thank goodness it came back negative! Yay me!

I really think Lighthouse hit the hammer with the nail, or however y'all say that, not very good with analogy LOL!

Thank you all very very much for putting a thinking cap on, I know how hard that is, but now I'm excited and off to reaserch!

Y'all are the best!

[Tharrell]

Tharrell

Sounds like your neuro is on the right track with the MRI of your neck. My doc has me on a B-complex supplement. Your B vitamins are water soluble, meaning what you don't use your body eliminates. The B vitamins are also stress vitamins. Chronic illness alone is a major stressor.

Let us know how that MRI turns out, okay?

Hugs

Litli Wlowa

Did you know that B6 defiency is rare enough it's in the Database of Rare Diseases? I know my intestinal problems of celiacs has to do with mal absorbtion of vitamins and nutrients.

[wendyoh]

Litliwlowa
I have some cspine issues but have never been given any really great solutions.....so what does one do for the issue with C2 you refer to? I feel like spinal issues are an undertalked about huge problem in healthcare.....if surgery or physical therapy doesnt do it yr sort of plain out of luck......medication or rest or both.......

[Joe S.]

Surgery was not an option for my Cspine. I had chiropractic adjustments, and a neck brace for years. I used a rolled up towel to sleep or a still point inducer (two tennis balls tied tight in a sock put at C1/C2 area). I did Yoga neck hangs to stop the splinting actions of the neck muscles. Range of motion exercises helped to keep things loose.

The surgeon that I spoke to had the best success rate in six states with cervical surgery. It was 15%. You have to remember that surgeries are considered a success by doctors if you remain the same or get better. I met very few people that this helped.

It is a long process and took years for me to feel better.

[wendyoh]

Iowa and joe--thanks for feedback---I am often baffled wondering how the spinal and autoimmune feed into one another because at times I am unsure which thing is primary cause of various flare symptoms, they are both definitely at play and its interesting to me that one does seem to effect the other, I dont understand the mechanism there

so iowa what started yr neck problems way back? I am also curious why yr orthopedic person didnt like what yr neuro doing? to me the test would be is do i feel better? if the injections improved you thats the bottom line isn't it? I have been afraid to trysomething like that, one time a spine doctor mentioned maybe trying prolotherapy in neck but i am afraid of needles and if it made it worse it could be months to go away. I did consider laminenctomy and fusion even but too radical for my situation.  What else baffles me tho is how some neurologists can be dismissive like its not that big of a deal unless yr half paralyzed, for me its been really debilitating at times, not being able to bike and swim for example because of neck issues which was devastating in my late 20s to face for rest of life but the med system isnt set up to help explain or support in that with spine stuff that doesnt rise to level of surgery but if it was cancer or diabetes they would be more clear on identifiying the loss and problems associated i would guess.

[jazzlover]

Thanks for explaining your name, Litli Wlowa (Cherokee for "Little Flower")!!

[jazzlover]

Jazzlover: Amazingly none of old doctors thought to test me for lyme disease, but my new neuro did. Thank goodness it came back negative! Yay me!

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Doesn't always mean you don't have it, unfortunately.

[Tharrell]

/quote]
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Doesn't always mean you don't have it, unfortunately.

Awww, put a spoke in my wheel. Oh well, not yet done with testing anyway.

[wendyoh]

Litli Wlowa thanks for clarifyng yr name,  I was too lazy to go look back at spelling when I was posting and thought the L was a capital I....apparently Iowa means "sleepy heads" and some other nuances  http://urbandale.patch.com/blog_posts/searching-for-the-meaning-of-iowa-word-roots-prairie-roots-blog

thanks too for info on spine etc my known neck problems are mostly c5 and 6 per MRI's about 10 years ago but I am intrigued now abut c2 after this thread, you have been thru the ringer with multiple injuries.....interesting what you are saying about neuros, they have never tried to help me other than a neurosurgeon offering surgery but otherwise they dont seem too worried, I never saw an orthopedic person, thats a novel idea