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Central vertigo, frontal headache, confusion, still no good answers

Hello doc, over the last year I've had an extensive workup for dizziness, headaches, and confusion.  An MRI of my brain with contrast; C-spine MRI without contrast; an MRA of brain and neck without contrast. negative.

I have seen two specialists.  A neurologist with sub-specialty in headaches, and an ENT with sub-specialty in ear/dizziness disorders.  The ENT thinks I have Central vertigo due to the spinning and nystagmus is persistant for hours or days even when laying still.

The headache in intractable, present all of the time, and changes in intensity very little, a dull tension centered over my ethmoid sinuses and spreading back over my forehead and the top of my head. Sometimes pressure is felt in my upper nose/behind my nasal region. Headache generally improves 50% or so when lying down for a while

No papolodima, no vestibular tumors, occasional mild tinitus, excellent gait, and episodic severe positional (central?) vertigo that comes and goes for say 3-5 days at a time on average, disapears, and returns later 2 weeks or 2 months later, unpredictable.

The constants are the headache, again centered directly over my nose between my eyes, spreads tension back over the top of my head,  and confusion, trouble concentrating.      

I am tempted to insist on a doppler ultrasound study of my neck and entire trans-cranial blood vessel system, but I don't know if I should.  How can the blood pressure be measure in my head, similar to pulmonary hypertension, but rather cranial hypertension (high cranial BP *not* CSF) that cant be detected by the arm cuff pressure?
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Avatar universal
A related discussion, frontal headache was started.
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Avatar universal
There are several ways to differentiate between central (brain) and peripheral (inner/middle ear) vertigo

Central vertigo is suggested if it does not 'fatigue' ie it persists, if it does not go away when lying completely still, if there is a not a lot of nausea or vomiting, or if there are other symptoms from the brainstem such as double vision, facial droop, swalowing difficulties etc. Tests such as videonystagmography can give still more detailed and accurate answers, and are available at a 0to-neurology office.

Headache that is positional, better when laying, may reflect abnormal pressure in teh cerebrospinal fluid, measuring this pressure during a spinal tap may help figure it out. Measuring the actual intra-cranial BP is a very invasive process only done in intensive care settings, and is not appropriate in your case. It is more important that your arm cuff pressure is within normal limits in terms of neurological disease.  Measuring the CSF pressure is mor reflective of 'intracranial hypertension' as neurologists refer to it.

Good luck
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Avatar universal
Sometimes a so-called "low-pressure" headache can present exactly the way you're describing:  headache most of the time you're sitting up but with improvement upon lying down.   It can be caused by a leak of CSF out of your central nervous system, thus "sagging" the brain and creating a sensation of pain.  A leak can be either due to trauma (e.g., spinal tap, epidural anesthesia during childbirth, or actual trauma) or could be spontaneous.  Do you have any funny "whooshing" sounds in your ears?  An MRI can sometimes reveal signs of intracranial hypotension in these cases, such as meningeal enhancement.  

It is a possibility, if a lot of other things have been ruled out.   But also, be sure not to overuse any over-the-counter meds for your headache, as you may be developing a rebound headache on top of it.

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Avatar universal
Low pressure will cause tinnitus over time depending on how low the pressure is and how often. It does not matter where the leak is or if there is a leak for the tinnitus. It is pulling of the nerves and whatnot when the brain sags that causes the tinnitus. That is also what causes much of the headache along with vascular dialation. Few people report wooshing sound. LP, MRI, CT, do not always Dx low pressure even when a leak has already been identified. Low pressure and leaks are underdiagnosed and even when strongly suspected, hard to verify.
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Avatar universal
I think you should go back to your neurologist and ask them that question.  I believe you may be able to do a CSF flow study which will look for a CSF leak.  Also, sometimes it's useful to have your MRI images looked at by another radiologist (just in case), looking specifically for evidence of a leak (sometimes they don't know that they should be looking for it to look for and miss it).  

It's not always easy.  Plus, the CSF leak could happen anywhere -- from your head to the bottom of your spine, but if you do, in fact, have some "tinnitus"  -- a skull leak may be possible.  

I hope you find some resolution.  In the meantime, I'd make sure you're well-hydrated.
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Avatar universal
I do indeed have occasional wooshing sounds, and/or a high pitched squeal in my ears.   However, this tinnitus is not constant, and is usually only noticed when I step into a quiet room (closet, bathroom, etc).   But the it can become quite loud.  It's like a mixture of wind blowing (whooshing) in my ears, and a high pitched constant squeal.  

Question is,  since I've had a negative MRI of the brain (with contrast) and c-spine (without contrast), the how can a CSF leak still be proven?
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Avatar universal

Do you guys remember doing any exercise 1-5 days before the symptoms kicked in? A strenuous gym work out or something? I'm starting to think that the majority of these unsolvable headaches are all caused by neck problems. I've noticed a lot of people caused them by exercise and hurting their neck.
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Avatar universal
Dizziness, headache, sinus, joint pain, numbness in extremities are things I've been chasing down with little success for many years.  I recently learned these can all be symptoms of Lyme Disease.

I had a Lyme test, which came back negative, but later learned the standard tests have a very high rate of false negatives.

One of the newest approaches to test for Lyme and related bacterial infections is by examining vitamin D metabolites.  My levels turned out to be very abnormal.

Lyme Symptoms: http://www.ussartf.org/lyme_disease.htm

Vitamin D test info and treatment: http://www.marshallprotocol.com

Best of luck to you.
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Avatar universal
I have been trying to post a very similar question on this website for days so I am interested to see what kind of feedback you receive.  

Since July 4th of this year (possibily earlier) I have been experiencing dizziness, lightheadedness numbness in my extremities along with a never ending headache.  Recently my headache symptoms have intensified and are very similar to yours and the numbness has been more confined to my face but has also intensified.  I feel dizzy and confused and I have not seen a doctor or specialist yet that can find anything physically wrong with me.  

I have had a heart ultrasound w/treadmill test, MRI and MRA of my brain, done physical therapy for a small bone spur in my neck due to poor posture, seen a nuerologist and a rheumotologist(sp?) and have had a ton of blood work done. Every test has come back normal. I have an appointment to see a ENT specialist and Allergest but I am really concerned at this point.

Maybe some of the commentary you receive will help me pursue a different line a treatment.
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Avatar universal
Doc, hope you read this too...

I forgot to mention that I have been waking up in the middle of the night recently (usually 1-2 times a week on average) with severe knee pain, about 7 out of 10 times its in both knees.   It's so bad that I can't move my legs I have to kind of wiggle around in the bed for a minute to get them moving then after 5-10 minutes of agonizing pain I finally "walk off" or "work out" most of the pain.     No pain during the day when I'm active...
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