Discussions By Condition: I cannot get a diagnosis.

Rare form of Brain Fog

Posted In: I cannot get a diagnosis. 12 Replies
  • Posted By: Rare-brian-problem
  • August 14, 2008
  • 08:23 PM

I could use anyones help! I have a very very severe
nurological sensation problems for the past 23 years.

I have what many people would call brain fog however, it is
much more unique than anything I have come across and can not be
lumped into simple brain fog.

23 years ago my vision, hearing and all other senses stopped functioning
properly. Everything looked sounded & felt blurry like an old blurry staticy
TV. I found it very hard to read and focus on words. It would feel like every letter was jumping. I could not tell where sounds were coming from
nor-could I properly feel-touch properly anywhere on my body. I could not sense most of the information that I use to be able to sense.

I new it was a problem with my brains ability to normally process any sensory input. This problem was and can be so bad that you really don't get enough information to know where you are or what day it is.

I was desperate and 23 years ago I saw many doctors & was hospitalized
many times. The doctors naturally started to prescribe PYCHOTROPIC MEDICATIONS. To put in bluntly all these mediactions worstened my condition 10 fold. So much so that I was suffering more than any human
should have to. I regard this year as a destructive time.


That lasted 1 year after that year my vision, hearing & sensation problems were much worse. So I pruged my self of all the drugs and went back to work 6 months later.

I than had MRI's full checkups full Nurological tests vision & hear tests ect but not a ***n clue as to what causes this.

For the next 23 Years I have for the most part I did not see any
doctors for this condition. I was so affraid repeating the suffering I went through that first year and I wanted to stay alive. So I worked, started my own business exersised alot hiked, socialized got married had a child with a new one on the way.

I was able to deal with these severe symptoms by virtue of my own will
power and the will to live. I have tried many suppliments Amino acids
ect. Over time I was able to reduce the magnitude of my symptoms
for periods of time. Some of these supplimnets seem to help and I would not be so hard to deal with and I was able to
get more information through my sight, hearing touch ect.

However, the major problems remain exactly the same 24 hours a day year after year.

I am just starting this thread to to see if any one has any knowledge or understanding of what may cause this.


The only medical test that ever gave me any clue was during a 30 day hospital stay in 1986. At the begining of the stay I was given a
dymethison supression test. The results showed my Cortisol level were
very high. After 30 days being on doxipin they gave me the dymethison supression test again. At this point the test showed my Cortisol levels
where through the roof. I assumed the drugs where what made me worst. I sure felt worse.


So any body with any info. I am all ears.

Reply Flag this Discussion

12 Replies:

  • sounds like you need to see an endocrinologist, the high cortisol is probably what caused the problem, and it sounds like the meds made it even higher. "Look at the way in which our nervous system processes sensory information. This is modified by the stress hormone, cortisol. A high cortisol level is a characteristic feature of stress, accompanied by a reduction in sensory sharpness, or the ability to detect very weak stimuli, and an accompanying improvement in sensory discrimination." Maybe thats why they gave you the meds, maybe they figured you were just stressed, but you should probably go see an endocrinologist so they can run tests for anything that may cause high cortisol levels.
    qwertyuiop123 453 Replies
    • August 15, 2008
    • 05:26 AM
    • 0
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  • It is funny I made up my mind to see a doctor after a long time. I have recently seen an Endocronologist, I started several 5 months ago. I told her about checking out my cortisol levels. However, she said she forgot to add this to my blood test. Heck I after all I have been through it so hard to get a doctor to follow through correctly.I started looking into suppliments that would block cortisol about 8 monthsago. I came across PS-100 Phosphatidylserine (PS).I only took small amounts and at times I felt like my vision was coming back. However, I discontinued it because after awhile I felt overstimulated which is weird. Heck I don't really know how it works. I am affected by very small doses of suppliments even basic vitamins.For the past 8 months I have tried very small amounts of HTTP-5, & GabaIf I take a full HTTp-5 tablet at night for a few nights I turn into a full zombie I get tiered and irritable during the day. I also took Gabait relaxes me buy I get very tiered after a week of taking that.I take these things because at time my static like vision seems toimprove a small amount. But never close to being normal.Recently I have been taking Shaklee multi-vitimans I get more energyand my problems are easier to deal with at times but after a few daysI get too reved up and Overwhellemed.I have now started taking allot of Omega-3 suppliments I heardthat 60 percent of the brain is made up of fatty acids, so I figured I needto rebuild my brain structure from scratch to get rid of this problem.The truth is in the past 3-4-5 months small aspects of sensation have beencoming back at times. Such as being able to see my surroundings clearer and having a better sensation of 3D space & sounds also touch.The return is very very slow so I have to be very aware of what I door take as much as I can. No soda no caffine no alchol. However some of these sensations are longer lasting and do not go that quickly.It times recently I have had relief. After 23 years even small sensationsare like heaven.However, I have no clue exactly what I am doing I feel like I am amad scientist experimenting on my self. I just hope I hit the jack pot someday and find something or some method that ends this for good...Thanks for you reply. I will have to go get my Cortisol levels checked
    Rare-brian-problem 4 Replies
    • August 15, 2008
    • 06:15 AM
    • 0
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  • It is funny I made up my mind to see a doctor again I have recently seen an Endocronologist for the first started several 5 months ago. I told her about checking out my cortisol levels. However, she said she forgot to add this to my blood test. Heck I after all I have been through it so hard to get a doctorto even follow through correctly.I started looking into suppliments that would block cortisol about 8 monthsago. I came across PS-100 Phosphatidylserine (PS).I only took small amounts and at times I felt like my vision was coming back.However, I discontinued it because after awhile I felt overstimulated whichis weird. I am affects by very small doses of even vitamins.For the past 8 months I have tried very small amounts of HTTP-5, & GabaIf I take a full tablet at night for a few nights I turn into a full zombieI get tiered and irritable on HTTP-5 after a week. I also took Gabait relaxes me buy I get very tiered after a week of taking that.I take these things because at time my static like vision seems toimprove a small amount. But never close to being normal.Recently I have been taking Shaklee multi-vitimans I get more energyand my problems are easier to deal with at times but after a few daysI get too reved up and Overwhellemed.I have now started taking allot of Omega-3 suppliments I heardthat 60 percent of the brain is made up of fatty acids, so I figured I needto rebuild my brain structure from scratch to get rid of this problem.The truth is in the past 3-4-5 months small aspects of sensation have beencoming back at time. Such as being able to see my surroundings clearer and having a better sensation of 3D space & sounds also touch.The return is very very slow so I have to be very aware of what I door take as much as I can. No soda no caffine no alchol.However, I have no clue exactly what I am doing I feel like I am amad scientist experimenting on my self. I just hope I hit the jack pot someday and find something or some method that ends this....Thanks for you reply. I will have to go get my Cortisol levels checked
    Rare-brian-problem 4 Replies
    • August 15, 2008
    • 06:19 AM
    • 0
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  • You definitly need to get someone to take a new look at those MRI's of your pituitary gland /hypothlamus. The hypothalamus is what links your nervous system to your endocrine system via the pituitary gland. It is also very close to the optic nerve. Any tumour could be causing the elevated cortisol levels and pressuring your optic nerve. These tumors are 90% benign and can be operated on. They hypothalamus controls body temprature, hunger, thirst, fatigue, anger and ciradian cycles. Elevated levels of cortisol can make you very fatiuged, give you thin skin, strech marks, make you gain weight, and it will make it hard for you to go to sleep at night and even harder for you to get up in the morning. As the last poster mentioned... you need to see an endocrologist that is willing to take you seriously. You should find great support on the fourm at www.cushings-help.com and lots of info at www.goodhormonehealth.com Kiera Oh.. I forgot to mention that it is possible for the cortisol levels to cycle... meaing that you might have normal levels for some length of time before you start producing more. While your levels sink you will have bad symptoms (withrdawl symptoms). After these periods it is most likely that you will feel very good for a while before it all starts over again...
    Anonymous 42789 Replies
    • August 15, 2008
    • 06:59 AM
    • 0
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  • I could not tell where sounds were coming from I was having trouble with my hearing and also had that same symptom. Doctor sent me to the hearing specialist who found my actual hearing was great but diagnosed me with a problem called CARP or Central Auditory Processing Disorder, the problem isnt my ears but is due to my brain how it processes what it hears and it cant tell where sounds are coming from. You have CARP too by the sounds of it..as a symptom of whatever your main issue is. I have another issue which causes me an issue with my central nervous system.. which is responsible for the CARP. Central nervous system issue i guess could cause all the other stuff you mentioned too................. http://en.wikipedia.org/wiki/Auditory_processing_disorder Auditory processing disorder can be a congenital or an acquired condition (for example; resulting from ear infections and head injuries) which refers to difficulties in the processing of auditory information within the central nervous system, such as problems with: "...sound localization and lateralization; auditory discrimination; auditory pattern recognition; temporal aspects of audition, including temporal integration, temporal discrimination (e.g., temporal gap detection), temporal ordering, and temporal masking; auditory performance in competing acoustic signals (including dichotic listening); and auditory performance with degraded acoustic signals." (Quote from: (Central) Auditory Processing Disorders, Technical Report, Jan 2005)It is recommended, and in some areas a legal requirement that Auditory Processing Disorder is assessed and diagnosed by an Audiologist. (Better still an Assessment Team comprising and Audiologist, a Speech and language Pathologist, and an Educational Psychologist)The Committee of UK Medical Professionals Steering the UK Auditory Processing Disorder Research Program have developed the following working definition of Auditory Processing Disorder "APD results from impaired neural function and is characterized by poor recognition, discrimination, separation, grouping, localization, or ordering of non-speech sounds. It does not solely result from a deficit in general attention, language or other cognitive processes CharacteristicsPersons with CAPD often:have trouble paying attention to and remembering information presented orally; cope better with visually acquired informationmay have trouble paying attention and remembering information when information is simultaneously presented in multiple modalitieshave problems carrying out multi-step directions given orally; need to hear only one direction at a timeappear to have poor listening skills, and need people to speak slowlyneed more time to process information.develop a dislike for locations with background noise such as bar, clubs or other social locationsprefer written communication (e.g. text chat)It appears to others as a problem with listening. Somebody with APD may be accused of "not listening".APD can manifest as problems determining the direction of sounds, difficulty perceiving differences between speech sounds and the sequencing of these sounds into meaningful words, confusing similar sounds such as "hat" with "bat", "there" with "where", etc. Fewer words may be perceived than were actually said, as there can be problems detecting the gaps between words, creating the sense that someone is speaking unfamiliar or nonsense words. Problems relating what has been said with its meaning, despite obvious recognition that a word has been said, as well as repetition of the word. Separating speech sounds from background noise, pink sound, such as the sound of a radio, television or a noisy bar, it can be difficult to impossible to understand speech, depending on the severity of the auditory processing disorder. Using a telephone can be problematic, due to low quality audio, poor signal, intermittent sounds and the chopping of words can be a problem for someone with Auditory processing disorder to cope with, in comparison with someone with normal auditory processing. ............... CARP also can be caused by things like lead poisoning.
    taniaaust1 2267 Replies
    • August 15, 2008
    • 09:00 AM
    • 0
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  • CARPCushing's SyndromeCARP
    Rare-brian-problem 4 Replies
    • August 16, 2008
    • 05:33 AM
    • 0
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  • Thanks for the information.I thought it may be cushings, however I don’t have the typical traits thatcomes with cushings.CARP I can relate to because that is what it feels like in regards to my hearingHowever, I have these problems with all my senses so I don’t know what to make of that.I will just need to get my cortisol levels checked.A big issue in regards to this problem is that most people I work with don’t know I have this problem.So I have forced my self to try to work like all my co-workers for the past 23 years.It gets had at meetings because I can’t see and hear all the info like the rest so I have to really try toMake sense of things. This is not good for my condition. And I focus so hard that at timesI treat bogus information as important data because I am not aware it is bogus.It is funny because I have learned a great skill over the years with my use of computer animationand graphics. I can reproduce information for the people I work for in ways that really can helpthe programs I support. It’s as if I am recreating the world on my computer so I can make heads or talesof it and it as a side effect supports my programs and I am in great demand for my product at work..I wish I could just see my own work like everyone else does.Thanks to anyone whom reads this it helps to get it off my chest.
    Rare-brian-problem 4 Replies
    • August 16, 2008
    • 05:37 AM
    • 0
    Flag this Response
  • I could use anyones help! I have a very very severe nurological sensation problems for the past 23 years. I have what many people would call brain fog however, it ismuch more unique than anything I have come across and can not belumped into simple brain fog. 23 years ago my vision, hearing and all other senses stopped functioningproperly. Everything looked sounded & felt blurry like an old blurry staticyTV. I found it very hard to read and focus on words. It would feel like every letter was jumping. I could not tell where sounds were coming fromnor-could I properly feel-touch properly anywhere on my body. I could not sense most of the information that I use to be able to sense. I new it was a problem with my brains ability to normally process any sensory input. This problem was and can be so bad that you really don't get enough information to know where you are or what day it is. I was desperate and 23 years ago I saw many doctors & was hospitalizedmany times. The doctors naturally started to prescribe PYCHOTROPIC MEDICATIONS. To put in bluntly all these mediactions worstened my condition 10 fold. So much so that I was suffering more than any humanshould have to. I regard this year as a destructive time. That lasted 1 year after that year my vision, hearing & sensation problems were much worse. So I pruged my self of all the drugs and went back to work 6 months later. I than had MRI's full checkups full Nurological tests vision & hear tests ect but not a ***n clue as to what causes this. For the next 23 Years I have for the most part I did not see anydoctors for this condition. I was so affraid repeating the suffering I went through that first year and I wanted to stay alive. So I worked, started my own business exersised alot hiked, socialized got married had a child with a new one on the way. I was able to deal with these severe symptoms by virtue of my own willpower and the will to live. I have tried many suppliments Amino acidsect. Over time I was able to reduce the magnitude of my symptomsfor periods of time. Some of these supplimnets seem to help and I would not be so hard to deal with and I was able toget more information through my sight, hearing touch ect. However, the major problems remain exactly the same 24 hours a day year after year. I am just starting this thread to to see if any one has any knowledge or understanding of what may cause this. The only medical test that ever gave me any clue was during a 30 day hospital stay in 1986. At the begining of the stay I was given a dymethison supression test. The results showed my Cortisol level werevery high. After 30 days being on doxipin they gave me the dymethison supression test again. At this point the test showed my Cortisol levelswhere through the roof. I assumed the drugs where what made me worst. I sure felt worse. So any body with any info. I am all ears.I have the exact same problem your just might be a tad more severe. I am currently in the see all doctors stage and barely hanging in there. I just found this website. http://drlwilson.com/Articles/gb3.htm
    Anonymous 42789 Replies
    • November 7, 2009
    • 06:15 PM
    • 0
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  • I have the exact same problem your just might be a tad more severe. I am currently in the see all doctors stage and barely hanging in there. I just found this website. http://drlwilson.com/Articles/gb3.htmHve your thyroid levels tested. I had your symptoms when I was diagnosed with Graves Disease.
    Anonymous 42789 Replies
    • November 8, 2009
    • 06:06 AM
    • 0
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  • High cortisol? You might want to look into electromagnetic hypersensitivity. These stress hormones go up upon exposure.
    kermworm 81 Replies
    • November 8, 2009
    • 06:02 PM
    • 0
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  • Correction to my old post... It was meant to say CAPD (not CARP). I hope the poster worked out his issue. CAPD being a brain issue.. there may be other brain processing disorder symptoms other then with what hearing ones but they'd be called something else.
    taniaaust1 2267 Replies
    • February 14, 2011
    • 08:20 AM
    • 0
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  • Check this out http://selfhacked.com/2013/06/15/the-cause-of-brain-fog/
    Anonymous 1 Replies Flag this Response
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