I can't function. Long term dizziness, nausea, headaches

[anlo]

I found out I do not have lupus (yay!). I'll admit to being frustrated, though, because I still don't know what's going on with me. This has been going on for months now. It's gotten to the point that I'm avoiding driving because I feel too dizzy.

Summary: I have had a brain MRI, several rounds of blood work, x-ray of my sinuses, appointment with an ENT, allergy testing (skin tests were all negative). Last summer I also had stool testing and an upper endoscopy b/c of the unexplained nausea. ALL of these tests have come back okay, with the recent exception of the positive ANA in my blood work. I have an appt. tomorrow to discuss my symptoms.

alzi, I've seen you respond to a lot of posts about dizziness - any insight? Is there anyone else here who'd like to chat? I'm really afraid my doctor is going to tell me he doesn't know what else to do to help me.

[panicked]

I am having the same symptoms! I actually was going to make a dr. Appt today because if it. I was recently dx with celiacs and was thinking it was just a detox from gluten, but now I'm thinking it's not.

[anlo]

Nov 5, 2013 11:02:56 GMT -5 panicked said:

I am having the same symptoms! I actually was going to make a dr. Appt today because if it. I was recently dx with celiacs and was thinking it was just a detox from gluten, but now I'm thinking it's not.

Ugh, I'm sorry you're dealing with it, too. If you don't mind sharing, what led up to your dx with celiac? Were you having these symptoms then?

[bonquiqui]

I am sorry that you are dealing with this.  I had the same thing.  Daily nausea and dizziness.  I would throw up every single morning for a year.  It was awful.  Do you notice feeling dizzy/nauseous when you get out of bed or up from laying down?  It might be BPV  

www.webmd.com/brain/tc/benign-paroxysmal-positional-vertigo-bppv-topic-overview


It turns out I had BPV from MS.  They were able to correct the BPV with vestibular therapy.  SImple.  I just had to see an occupational/physical therapist who specialized in vestibular therapy. 

I had the full workup like you, and my dr was ready to send me to mayo.  Thankfully, they put it together after the MRI.  I hope you feel better, and get the answers you need, because it is very frustrating.  

[anlo]

@cse1960, would the doctor/ENT be able to tell during an exam? Labyrinthitis (sp?) was ruled out because it's been going on for so long now. I will ask about other inner ear stuff tomorrow, thank you.

bonquiqui, that sounds similar to what I'm feeling. Sometimes I have a sudden feeling that the room is tilting and spinning around me. That only lasts for a few minutes. It's hard to describe the other sensation. It's like being off balance every time I turn or move my head, like if I move to quickly it will trigger the sudden vertigo. I'll ask about BPV, thanks. Was your MRI what led to your MS diagnosis?

[bonquiqui]

Nov 5, 2013 11:20:14 GMT -5 anlo said:

@cse1960, would the doctor/ENT be able to tell during an exam? Labyrinthitis (sp?) was ruled out because it's been going on for so long now. I will ask about other inner ear stuff tomorrow, thank you.

bonquiqui, that sounds similar to what I'm feeling. Sometimes I have a sudden feeling that the room is tilting and spinning around me. That only lasts for a few minutes. It's hard to describe the other sensation. It's like being off balance every time I turn or move my head, like if I move to quickly it will trigger the sudden vertigo. I'll ask about BPV, thanks. Was your MRI what led to your MS diagnosis?

The MRI was the trigger that sent me to the Neurologist, because it came back suggesting MS, but that was not the only factor.  It is possible to have MS without lesions from the brain MRI.  I had to have a second MRI to include the cervical spine, and more lesions were found.  I also had a spinal tap.  Those things, plus my symptoms led to my diagnosis.  

The hard thing with the nausea, is that it is not the most common MS symptom, but two people are alike.  The drs tried giving me different nausea medicines, but the problem was directly on rising out of bed, I would puke.  By the time I took the pill it was too late.  It was the most horrible experience.  

I will say that it is very possible to have BPV without MS.  


Do you have any other symptoms?  Fatigue, muscle weakness, numbness, tingling?  or is it just the vertigo?  The other thing that gets me is the positive ANA.  I have that too.  

[bonquiqui]

Also, what MRI did they do?  Was it just a brain?  Was it w/wout contrast?

[anlo]

Nov 5, 2013 11:35:03 GMT -5 bonquiqui said:

Also, what MRI did they do?  Was it just a brain?  Was it w/wout contrast?

That sounds awful. How are you doing now?

I do have a lot of fatigue, but nothing else other than the headaches. I've tried a migraine med without much luck. The MRI was of just my brain. They did several minutes without contrast, then gave me the injection and did more.

I feel like I'm an odd mix of symptoms that may not even be related to each other, kwim?

[panicked]

Nov 5, 2013 11:12:04 GMT -5 anlo said:

Nov 5, 2013 11:02:56 GMT -5 panicked said:

I am having the same symptoms! I actually was going to make a dr. Appt today because if it. I was recently dx with celiacs and was thinking it was just a detox from gluten, but now I'm thinking it's not.

Ugh, I'm sorry you're dealing with it, too. If you don't mind sharing, what led up to your dx with celiac? Were you having these symptoms then?

I wasn't having the symptoms then, other than the fatigue. I was having severe heartburn, bloating, and pain. I had an endoscopy to rule out an ulcer and they took biopsies, which dx the Celiacs.

Mine isn't when I get out of bed (I usually feel fine for the first hour or so of my day). As the day wears on, I get more and more icky feeling. The dizziness is fine if I'm laying down, but if I'm up and about, even just moving my eyes another direction, I feel off balance.

[bonquiqui]

Nov 5, 2013 11:44:22 GMT -5 anlo said:

That sounds awful. How are you doing now?

I do have a lot of fatigue, but nothing else other than the headaches. I've tried a migraine med without much luck. The MRI was of just my brain. They did several minutes without contrast, then gave me the injection and did more.

I feel like I'm an odd mix of symptoms that may not even be related to each other, kwim?

Oh yes, completely, and it is so frustrating.  It is like trying to put a puzzle together, but you have different puzzle pieces from different puzzles in the mix.  

I remember being so confused because while I had vomiting and nausea, I had no stomach pain, no heartburn, no reflux, none of that.  I still get nausea, but thankfully it is not as severe, frequent, and most of the time does not induce vomiting.  

Is your appointment tomorrow with your PCP? 

I would definitely bring up inner ear/BPV tomorrow, because it sounds a lot like what it is.  Not the headache part, but the dizziness and nausea.  

[alzi]

Describe your dizziness.

Have you had a VNG?

[anlo]

Nov 5, 2013 11:56:38 GMT -5 alzi said:

Describe your dizziness.

Have you had a VNG?

I don't think I've had a VNG because I do not know what that is, lol.

Most of the time, I feel off-balance when I move my head, bend over, move from lying down to sitting, etc. Even sitting in my recliner that rocks make me feel like I'm riding a rollercoaster. I do not feel light headed at all. It only lasts for a few seconds, but it happens every single time I move my head even the slightest bit.

Other times, I get hit with sudden, severe vertigo, like the room is tilted and spinning around me. This happens much less often, maybe 3x in the past month.

[bonquiqui]

Nov 5, 2013 12:02:16 GMT -5 anlo said:

Nov 5, 2013 11:56:38 GMT -5 alzi said:

Describe your dizziness.

Have you had a VNG?

I don't think I've had a VNG because I do not know what that is, lol.

Most of the time, I feel off-balance when I move my head, bend over, move from lying down to sitting, etc. Even sitting in my recliner that rocks make me feel like I'm riding a rollercoaster. I do not feel light headed at all. It only lasts for a few seconds, but it happens every single time I move my head even the slightest bit.

Other times, I get hit with sudden, severe vertigo, like the room is tilted and spinning around me. This happens much less often, maybe 3x in the past month.

This described me to a t.  Even when I went to the dentist and was reclining, I got severely dizzy, and got sick.  

[alzi]

The dizziness with head movement and position change could be consistent with BPPV.

Either way, a VNG is balance testing done by an audiologist to determine what part if the auditory system, if any, is causing the dizziness.

I'd go see an ENT who has audiology on site.

Feel free to PM me if you have more questions

[anlo]

Nov 5, 2013 12:07:56 GMT -5 bonquiqui said:

Nov 5, 2013 12:02:16 GMT -5 anlo said:

I don't think I've had a VNG because I do not know what that is, lol.

Most of the time, I feel off-balance when I move my head, bend over, move from lying down to sitting, etc. Even sitting in my recliner that rocks make me feel like I'm riding a rollercoaster. I do not feel light headed at all. It only lasts for a few seconds, but it happens every single time I move my head even the slightest bit.

Other times, I get hit with sudden, severe vertigo, like the room is tilted and spinning around me. This happens much less often, maybe 3x in the past month.

This described me to a t.  Even when I went to the dentist and was reclining, I got severely dizzy, and got sick.  

OMG, the dentist's chair is the worst.

[starbuck]

Have them test for Lyme. It can cause lots of neuro and unexplainable symptoms.

Sent from my t-rex arms