Brain fog, dizziness, vision problems, head pressure, headache PLEASE HELP

Hello Elise.

I have been reading of your misery and thought of an alternate Neurological Diagnosis I came up with for my father a few years back when he was diagnosed with Parkinson's, and within mere months bound to a wheelchair.  He was in his late 70's at the time.  I only recalled this event privately, until I reread the part about you feeling "pulled-down" and IIH had been suggested, and they checked the content as I understood it of your Cerebro-Spinal fluid.

I have worked in Neuro-Diagnostics.  I am not a Physician.  In the case of my Father, no one was questioning his diagnosis of Parkinson's.  I will try to cut to the chase:  I did immediately cross-check his symptoms with the Parkinson's Diagnosis.  First at Mayo Clinic website, then Cleveland Clinic, then John Hopkins, then about 3 National Organizations.  I learned it was a criteria to NOT have attained wheelchair-bound status in less than years or a decade or more of having problems.  I realized he had an Incorrect Diagnosis.  By the end of the day I had found the Correct Diagnosis (though it took 2.4 years to get a Neurologist to agree).  He had the ONLY surgically reversible Neuro-Condition: Normal Pressure Hydrocephalus (NPH).  It was and remains somehow the most overlooked Neurological Disorder.  Children, I believe newborns, can have this problem most notable.  NPH can also be called (too much) "Water on the brain".

Your brain and spinal column and nerves are enclosed into a sack that is very efficient at not rupturing.  In your brain you have Ventricles that are the source for Cerebro-Spinal Fluid (C-SF).  They drop this liquid down, they re-uptake it (suck it back up) over and over.  In some people, I believe a genetic faulty issue causes one drop too many to not be re-uptaken.  Then another one, and on.  This process may take 2-3 decades to create the problem that my father had that was mistaken for Parkinson's, because his most notable symptom mimicked the "walk of a Parkinsonian" that is: at the waist, laterally leaning over from waist up to be in line with the ground, or pretty close to that. Now I have wondered if my crazy headaches might be NPH -25 years (I am 52).  I am writing you this message with this same consideration.  

'With NPH developed, you walk in this manner, also you have a feeling that magnets are both at the bottoms of your feet/shoes, and on the floor beneath, so walking is a bit like wanting to ice skate and pulling the foot up because it is not coming up like it should.  The 3rd symptom of well-developed NPH is peeing your pants and not being aware of it and not having an issue od Dementia, Alzheimer's, etc.

The reason it mimics Parkinson's when developed is: when there is SOOO MUCH C-SF in that "enclosed bag" holding your brain and spinal column and nerves, eventually one reaches a point where it is squishing everything it can to make room for itself.  There is not much to squish on a vertebrae.  But guess what you can squeeze a LOT?  The brain.  It got so squished that his Dopamine Neurotransmitters (the thing Parkinsonian's have lost and are losing more of which creates a problem communicating to the nerves your intent to walk across the room, and the data how to do it reaches the leg muscle fiber in a partial document creating the inimitable walk.  Except it is imitable.  N-PH imitates Dopamine Neuro-transmitter death.  But they are not dead, just squished.

A diagnosis is done on the C-SF: not on make-up, but on removal.  A hospital inpatient 3-day Spinal Tap was finally done on my Father.  Even though it comes out of your spine, the system is a "whole".  It also relieves your brain of excessive C-SF.  Thet gave him cognitive tests and walking tests before and after the 3 days.  It was a world of difference.  

He had Neuro-Surgery (Brain Surgery) where a shunt/electric pump was installed and connected to a "straw" under his skin that pushed that excessive fluid (there is not yet a way to get it from being produced- too much left) so it goes to his abdomen, he urinates it out.  They can make non-invasive adjustments to the aperture of the opening and straw to control if too little or too much (dizziness) is shunted away with a cool external magnet.

Note:  My Father also had weird very disturbing dizziness he spoke of to me from decades earlier.  

Outcome: In 2.4 years since "Wrong Diagnosis of Parkinson's" he got worse and worse and was being outfitted for a "blow-controlled indoor wheelchair".  The last 4-6 weeks prior to getting him to UT Southwestern - Dallas (where I did not even have to ask them to consider NPH, then get turned down over and over for a 3 Day Spinal Tap inpatient test) I hear them say: Mr. X:  We have reason to believe you have NPH....3 day Spinal Tap Test.  I burst out crying.  His earlier Neurologists were allegedly no slacks: One was trained at the legendary Mayo Clinic - Rochester. They all refused even with a lawyer letter that all is at patient request.  I was the only one that ever saw it differently and never gave up. Back to outcome:

Exactly what I saw in my head 2.4 years ago: Day One: Rolled into Hospital and Neuro-Surgery performed.  Sleep overnight.  Day 2:  He could and did walk himself to check out of the hospital and go home.  Day 3:  He could RUN outside.  All caught on video.

So it is 2:00 AM my time, but when I read you felt you were being "pulled down" you got my attention.  Once again I thought:  What does Normal Pressure Hydrocephalus look like 25 years before you can no longer walk?  Because the ventricles in that person are already creating the faulty behavior that will lead to total failure.  I am happy to help screen you if you wish.  Again, not a Physician, but an extremely inquisitive person who has worked in Medical:  Neuro-Diagnostics in particular.  Oh, for my ex-Father-in Law I even found that same machine for the Vestibular Disturbances designed my the retired Physician in Oregon, the failing continued enterprise was being run by his daughter at the time.  We located "placed and used Epley Machines".  Guess what?  Could not find one that was still working (3 yrs ago?) because when the Inventor retired and whatever else happened, the constant attention and "Tech/ Engineer support" required to keep one of those machines running was not available.  If you have seen one, it looks like a Leonardo DaVinci design.

This may all be superfluous, but there was a question in MY mind.  I wanted you to know.  And to be prepared for hearing "no way" if you research it and feel you need to check it out.  It took 2.4 years, and I am already in Sales and used to calling on Neurologists.  I'm here.  Good luck.

Have you had blood tests done? Is your calcium high? I'm having all the same problems and am being diagnosed with hyperparathyroidism. Look this up and check your calcium levels and your PTH levels. This disease goes misdiagnosed often and is deadly, but once tumors are removed life is suppose to get back to normal.

Hello Elise. (I tried posting this last night - it may be elsewhere? If duplicated, sorry, will fix.)

I have been reading of your misery and thought of an alternate Neurological Diagnosis I came up with for my father a few years back when he was diagnosed with Parkinson's, and within mere months bound to a wheelchair.  He was in his late 70's at the time.  I only recalled this event privately, until I reread the part about you feeling "pulled-down" and IIH had been suggested, and they checked the content as I understood it of your Cerebro-Spinal fluid.

I have worked in Neuro-Diagnostics.  I am not a Physician.  In the case of my Father, no one was questioning his diagnosis of Parkinson's.  I will try to cut to the chase:  I did immediately cross-check his symptoms with the Parkinson's Diagnosis.  First at Mayo Clinic website, then Cleveland Clinic, then John Hopkins, then about 3 National Organizations.  I learned it was a criteria to NOT have attained wheelchair-bound status in less than years or a decade or more of having problems.  I realized he had an Incorrect Diagnosis.  By the end of the day I had found the Correct Diagnosis (though it took 2.4 years to get a Neurologist to agree).  He had the ONLY surgically reversible Neuro-Condition: Normal Pressure Hydrocephalus (NPH).  It was and remains somehow the most overlooked Neurological Disorder.  Children, I believe newborns, can have this problem most notable.  NPH can also be called (too much) "Water on the brain".

Your brain and spinal column and nerves are enclosed into a sack that is very efficient at not rupturing.  In your brain you have Ventricles that are the source for Cerebro-Spinal Fluid (C-SF).  They drop this liquid down, they re-uptake it (suck it back up) over and over.  In some people, I believe a genetic faulty issue causes one drop too many to not be re-uptaken.  Then another one, and on.  This process may take 2-3 decades to create the problem that my father had that was mistaken for Parkinson's, because his most notable symptom mimicked the "walk of a Parkinsonian" that is: at the waist, laterally leaning over from waist up to be in line with the ground, or pretty close to that. Now I have wondered if my crazy headaches might be NPH -25 years (I am 52).  I am writing you this message with this same consideration.  

'With NPH developed, you walk in this manner, also you have a feeling that magnets are both at the bottoms of your feet/shoes, and on the floor beneath, so walking is a bit like wanting to ice skate and pulling the foot up because it is not coming up like it should.  The 3rd symptom of well-developed NPH is peeing your pants and not being aware of it and not having an issue od Dementia, Alzheimer's, etc.

The reason it mimics Parkinson's when developed is: when there is SOOO MUCH C-SF in that "enclosed bag" holding your brain and spinal column and nerves, eventually one reaches a point where it is squishing everything it can to make room for itself.  There is not much to squish on a vertebrae.  But guess what you can squeeze a LOT?  The brain.  It got so squished that his Dopamine Neurotransmitters (the thing Parkinsonian's have lost and are losing more of which creates a problem communicating to the nerves your intent to walk across the room, and the data how to do it reaches the leg muscle fiber in a partial document creating the inimitable walk.  Except it is imitable.  N-PH imitates Dopamine Neuro-transmitter death.  But they are not dead, just squished.

A diagnosis is done on the C-SF: not on make-up, but on removal.  A hospital inpatient 3-day Spinal Tap was finally done on my Father.  Even though it comes out of your spine, the system is a "whole".  It also relieves your brain of excessive C-SF.  Thet gave him cognitive tests and walking tests before and after the 3 days.  It was a world of difference.  

He had Neuro-Surgery (Brain Surgery) where a shunt/electric pump was installed and connected to a "straw" under his skin that pushed that excessive fluid (there is not yet a way to get it from being produced- too much left) so it goes to his abdomen, he urinates it out.  They can make non-invasive adjustments to the aperture of the opening and straw to control if too little or too much (dizziness) is shunted away with a cool external magnet.

Note:  My Father also had weird very disturbing dizziness he spoke of to me from decades earlier.  

Outcome: In 2.4 years since "Wrong Diagnosis of Parkinson's" he got worse and worse and was being outfitted for a "blow-controlled indoor wheelchair".  The last 4-6 weeks prior to getting him to UT Southwestern - Dallas (where I did not even have to ask them to consider NPH, then get turned down over and over for a 3 Day Spinal Tap inpatient test) I hear them say: Mr. X:  We have reason to believe you have NPH....3 day Spinal Tap Test.  I burst out crying.  His earlier Neurologists were allegedly no slacks: One was trained at the legendary Mayo Clinic - Rochester. They all refused even with a lawyer letter that all is at patient request.  I was the only one that ever saw it differently and never gave up. Back to outcome:

Exactly what I saw in my head 2.4 years ago: Day One: Rolled into Hospital and Neuro-Surgery performed.  Sleep overnight.  Day 2:  He could and did walk himself to check out of the hospital and go home.  Day 3:  He could RUN outside.  All caught on video.

So it is 2:00 AM my time, but when I read you felt you were being "pulled down" you got my attention.  Once again I thought:  What does Normal Pressure Hydrocephalus look like 25 years before you can no longer walk?  Because the ventricles in that person are already creating the faulty behavior that will lead to total failure.  I am happy to help screen you if you wish.  Again, not a Physician, but an extremely inquisitive person who has worked in Medical:  Neuro-Diagnostics in particular.  Oh, for my ex-Father-in Law I even found that same machine for the Vestibular Disturbances designed my the retired Physician in Oregon, the failing continued enterprise was being run by his daughter at the time.  We located "placed and used Epley Machines".  Guess what?  Could not find one that was still working (3 yrs ago?) because when the Inventor retired and whatever else happened, the constant attention and "Tech/ Engineer support" required to keep one of those machines running was not available.  If you have seen one, it looks like a Leonardo DaVinci design.

This may all be superfluous, but there was a question in MY mind.  I wanted you to know.  And to be prepared for hearing "no way" if you research it and feel you need to check it out.  It took 2.4 years, and I am already in Sales and used to calling on Neurologists.  I'm here.  Good luck.

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Hey did you ever find out what goin on ive been having the same symptoms for 8 months it’s horrible I’ve seen a ENT &Neurologist nothing yet

Hi thanks to all who replied with answers to help I will look into it but I can’t sleep main problem having to take diazepam twice to reduce tightness the med yo help sleep justvwush could sleep endlessly but does not happen 

You need to be tested for Multiple sclerosis. What you're describing sounds like it. This could easily be that, you fit the profile and it's logical. Have you had MRI's of your brain and spine? Have you been to the eye doctor to check for optic neuritis? Have you had your CSF tested? Sorry it's a lot, but start looking into it. It's notoriously hard to diagnose. Many people go on a journey like yours before they figure out what they have. If it is that, best to find out ASAP and get on a treatment plan so you can live a normal life.

I'm not sure this post is even valid anymore. This is my first time in a forum like this. Elise, your post describes what's going on with me to a T, except I do not have the painful headaches. I couldn't have described it better. It came up immediately when I typed in the key words of my symptoms. I'm getting highly emotional despite being on a combination of anti-anxiety meds. I am still able to function at this point but am very fearful as it is getting worse rather than better and has taken over my thoughts and is affecting simple things like handwriting and ability to type. There are so many responses I haven't been able to determine if you ever found a way to get rid of this. How are you feeling?

This was started a year ago but wanted to leave my thoughts for you and anyone else who is suffering from these issues.  Mine started in May after a long bike ride and as the gear went on everything got a lot worse.   Tension, anxiety, head fog, neck pain, etc.  Went to a neurologist on June and had an MRI where I was diagnosed with cervicogenic headaches.   Started with a new chiropractor and physical therapy but nothing has gotten better.  In the last 6 weeks my dizziness and tension have been really bad so over the recent holidays I scheduled an eye appt, ENT appt and spine orthopedist appt.   Eye doc changed my prescription.  ENT saw no issues in my inner ear.  My spine orthopedist did shed some light of what he thinks it is.   He did some c-rays of my neck and as he showed them to me while also looking at my MRI, he said I basically have curve in my cervical spone.  It’s straight and at the very top it curves slightly forward.  This is causing some deterioration of the c4-7 discs and bone spurs.  Biggest issue is my spine is pushing into my spinal column which he believes is causing the dizziness and other issues.  

With all of that said, his plan at this time for me is to have a steroid epidural in my neck which I am doing in 2 weeks. He also wants me to continue with my chiro and PT with a focus on working on my neck curvature.   I will meet with him again a week after the injection and then over the summer we will see get where things are.  If things remain the same, surgery might be the next step to remove the bad discs, replace them with stem cells to regenerate the discs.  He also may possibly insert a rod in my neck to help with the curvature issues.  So we will see where I end up.  I did mention to him my chiro and PT doc thought all of my head issues came from my neck and he was in 100% agreement.  

Anyway, I hope this is helpful to everyone who reads this.  I totally sympathize with all of you dealing with these symptoms.   Why I don’t know yet if the steps I am taking will work, my Ortho seems to think we are on the right track.