How Sick Am I?

[inkedmamajama]

I have been dizzy for 8 weeks.

yeah, you read that right. Near unrelenting, I have had less than 5 days (3) that I have not felt dizzy(and no longer than a 5-6 hour period of feeling good) Room spinning, nausea/vomit inducing, makes me want to cry dizziness. I usually read 3-4 books a week and this dizziness has been so bad I have finished two books in the last two months. light and loud noises make it worse-sometimes I am so dizzy that my vision 'swims' gets blurry and things like patterned floors appear like I am hallucinating.

I also have some other symptoms-my face goes numb, tingles, has shooting electrical pains and twitches.

I also have those pains in my arms, and sometimes my legs.

I am having intense eye pain coupled with migraines in the occipital nerve.

I got an MRI and it showed bright spots on the frontal lobe.

They did a lumbar puncture and took CSF for more tests, and lots of plasma as well.

I am still waiting on the results of those tests-but the neuro talked to me about other things that I thought were not a part of this-like my constant pain with 'no source', chronic diarrhea, photophobia and more.

I havent driven but once in the last 8 weeks-i am scared to drive in this condition with the constant dizziness.

I know they think it is definitely a neurological issue...

How sick am I?

[inkedmamajama]

I'm hoping the no responses is because the board was down all day...

So I talked to the neuro and all the tests came back normal. They thought it maybe was multiple scelorsis, but that test came back negative. Its also not hiv, herpes, west nile, or lyme disease (they tested for everything apparently) They think it is 'just migraines'

They said I should just start going to the emergency room.

I feel so alone in the world. Being dizzy and unable to function for two months is isolating and soul crushing...I just want to feel better-I don't even wish or hope for 'normal' anymore.

I feel like this is rambling, sorry.

[babygrant]

I read your post twice, but didn't reply because I had nothing for input.  It looks like your getting some good workup with your doctor and neurologist, so just keep pushign till you get answers.

 

Originally Posted by inkedmamajama 

I'm hoping the no responses is because the board was down all day...

So I talked to the neuro and all the tests came back normal. They thought it maybe was multiple scelorsis, but that test came back negative. Its also not hiv, herpes, west nile, or lyme disease (they tested for everything apparently) They think it is 'just migraines'

They said I should just start going to the emergency room.

I feel so alone in the world. Being dizzy and unable to function for two months is isolating and soul crushing...I just want to feel better-I don't even wish or hope for 'normal' anymore.

I feel like this is rambling, sorry.

[Ts Mom]

 I am a long (long!) time lurker, but I had to reply. I had something similar happen several years ago- I was dizzy, weak, throwing up a lot of the day, and I couldn't take care of my son.  Sometimes I had the pain that came with it, sometimes not.  I had face tingling- I could feel it in my teeth.  Sometimes I felt it in my arms and legs.  An MRI ruled out everything else- it was migraines.  I tried Imitrex- sometimes it helped, sometimes it just came back in a couple of hours.  I always woke up with them.  My neurologist started me on beta blockers to prevent them and Amerge to treat them, and I slowly got better. The worst lasted about 6-8 weeks, but I still get migraines years later, and I still take the beta blockers.  The headaches are not nearly as severe now.   I hope you get some answers soon- I know it feels so isolating, but you're not alone.

 Emily

[deditus]

I don't know much at all about neurological issues but these are all the ideas I have to throw out there:

vertigo - have you tried Zofran I think it is?

B12 - have you tried any even if you tested within "normal" range?

head injury - have you worn a monitor, I don't remember what they are called but the ones that go on your head and monitor brain activity - my mom had a seizure disorder diagnosed this way due to a car accident she was in, it took about 9 months for the symptoms to start, her strange symptoms were seizures  and went away with time although they do come back when she is overtired/stressed

[Panserbjorne]

Yes, I'd look at nutrient levels and I'm wondering if you were tested also for celiac disease?  That can manifest in a variety of ways, and one of the common ones is neurological.  Given that you also have digestive issues, it's worth considering.

As a random aside I have a family member that had persistent dizziness for several years similar, it sounds like, to what you are experiencing.  The only thing that helped was acupuncture.  In fact, it completely resolved it.  She found out years later that she also has celiac disease.  Go figure. 

I have also had people with *similar* symptoms do really well with alfalco.  It seems to do wonderous things for the neurological and digestive systems.

[Ornery]

There is no one test for MS, so keep that in mind.  The majority of people with MS have lesions on the brain, cervical or thoracic spine that can be detected by MRI, but some do not or sometimes people experience significant symptoms but do not develop lesions for years.  The spinal tap tests your CSF for oligoclonal bands but 5% of those with MS do not test positive on this test.  Not to say that you do have MS, just saying that you need to keep that info in mind. 

ETA:  I'm so sorry that you are experiencing all of this.   

[mommaklo]

Not sure about any other symptom but I has a friend that suffered with dizzyness almost every day and she finally found she was allergic to bananas. She was starting her day with one in her smoothies. She cut them out and seemed to change almost instantly. Plus, she got preg on her own, something shed been trying to do for awhile.

[alicewyf]

Did they test you for meniere's disease? My stepdad has that. He gets vertigo and he says it sucks.

[PreggieUBA2C]

I just wanted to add that all of your symptoms indicate at least a magnesium deficiency. If you have gut issues, you may not be able to absorb as much as you need, and you need more than usual with gut issues, so it's a vicious cycle. I would immediately begin taking ionic minerals in my water and find a source of magnesium that you can rub on your skin to bypass the gut altogether. It could be anything causing this, but what is certain is that you are mg deficient, so if taking it doesn't resolve the symptoms completely, then at least you are meeting your need for mg while you do further research and trouble-shooting, because you need the extra mg while your body is under stress.

I have in the past and still sometimes experience what you've described, only it went on unrelentingly for 6 years. It was torture. For me, I had to heal my adrenal glands, and thyroid, and from that, my neurological symptoms disappeared, my heart is regular and my connective tissue problems have left as well. I still get blinding migraines every now and then since the birth of our last child, but I've been able to curb them by drastically increasing dessicated thyroid when I feel one on its way.

It has been very disappointing to be taking this step backward; I felt good every day for the first time in my life just before I became pg this last time, and then I felt great again from 12 wks until 43 wks, tired from 43-46 wks, had a wonderful birth, and during the first wk pp, my dp really dropped the ball when I most needed support (as in he continually forgot to bring me food and water and my pelvis wasn't realigned, so walking was excruciating for the first three weeks pp) and I've not been able to regain the ground I lost.

Anyway. Magnesium. And I really understand the isolation. I do. Truly.

[neptunemama]

Have your docs ruled out a sinus infection?  I had my first one last year, and my symptoms began w/a horrible debilitating headache and dizziness.  And I couldn't think straight.  The pain made me very confused at times.  The pain in my head and, jaw and teeth was awful.  I would get disoriented in the supermarket, and I was extremely sensitive to light.  I had no pain when I pressed on my sinuses, nor did I have any snot/mucus etc... two things I thought were a hallmark of a sinus infection.  For the first two weeks, I didn't even feel more dizzy or in pain if I tilted my head forward, (apparently a good indicator of a sinus infection).  It took about 3-4 weeks for that to bother me.  Good luck, I hope they figure out what's causing your symptoms soon.

[eireann]

You don't need to worry about ms. It's been ruled out by your drs. That's great and please don't stress beyond that, no matter what you read. You've got those answers. Done!

I would def look into allergies and thyroid/Thyroiditis. I'd been dizzy for the last 11 months. Found out Im allergic to wheat. I cut that out and my dizzies have dramatically reduced.  Thyroid can def cause tingling in the body, and esp in the face it's very common for allergies. I have pinched nerves in my elbows and lower back; both can cause pins and needles. It sucks.

Also agree w pp - check for sinus infections. SO many people get dizziness with low grade, undetectable SIs. Oh, and Meniere's can also cause yucky dizziness, all dxable by a good ENT and manageable.

Do you grind your teeth? Tmj can cause all manner of probs. Are you under stress or have anxiety? All your symptoms can be caused by anxiety (which can be thyroid related too.) Not that I'm anxious or anything...