Hyperesthesia ?

[CrazyinLasCruces]

I have been with MedHelp for about a year and have a long list of symptoms -- but no one yet has given me an accurate diagnosis!

Please see my lengthy list of symptoms under MyHelp section!

But my presenting symptoms today are:

Hyperesthesia:

1. normal pain feels off-scale!
2. severe hyperacussis of the outside world
3. severe hyperacussis of my own body sounds!
4. pulsating hyperacussis (in the past)
5. color and glare problems -- surreal!
6. problems with walking past chain link fences -- the light and shadow  profoundly bother me!
7. petit mal symptoms
8. finally a diagnosis of epilepsy after full seizure and put on Lamictal
9. low blood sugar = 70 mg/dL
10. binge eating and drinking
11. allergies totally out of the bounds of reality!!!
11. frequent urination and Dysuria off-scale
12. all incoming stimuli perceived as pain? Fibromyalgia?
13. walking around in a cognitive cloud
14. painful odd, strained defecation
15. poor short term memory and logic skills

Am I on the right med?

jw harding

[J T Junig, MD PhD]

A person with this level of discomfort and disability, including a number of unusual symptoms, is best managed in a long-term inpatient pain program, using a combination of diagnostic, therapeutic, and psychiatric components.  You will not find a single definitive answer on a web site;  the symptoms you describe will not likely respond to a single intervention, or even to several interventions. I recommend calling university center pain programs and asking if any have inpatient, long term programs.  I know that there was one at University of Wisconsin Hospitals some time ago, but I'm not sure if it is still there now.

[CrazyinLasCruces]

Dear Doctor Juning:

I am fairly clear-headed this morning but I want to put in a call to you because “Mary” who had "pulsating hyperacussis" -- was calling in a suicide threat within the medhelp system -- and she reported that she had gone through those same symptoms for 2 years before anyone got to her!!!

I figured she went into a long term mental hospital or died (!!!)  in the interim – I found her on www.medhelp.com and asked her how she had survived but she did not get back to me yet.

If she had had surgery during that time then it would make sense because she also listed about 20 meds that did not work for her!!!

I am now unable to walk out of doors because of incoming TLE like symptoms -- no drugs work for me and feel foreign to me and toxic!!!  This implies surgery – I suppose – but where are the remaining Pain Centers in the US -- and do you know if Medicare would cover the cost of transport in the case of a totally exotic disease that only one doctor I have found has defined accurately…

Each day my allergies (catalysts) are off scale and frightening to me as the pain from one blowing of the nose cannot be described...well let’s say “infinite pain” and splitting of the psyche,” and I then overdose with Sudafed and Xanax and at the end of the day i would say I am psychotic.,..this morning I am cogent, logical and motivated to find a pain center somewhere!!!!

The sounds for me now if so off scale --- I close the door and hope the vibrations from MY environment don't kill me psychically – I can clearly here my stomach growling (10X) and my hearing is 99% more acute than the rest of the human race – see my journaling section….if you believe my mathematics…

Mary used the world "horror" to describe her symptoms – I would gladly get on a bus and ride anywhere in the US with something to cover my ears – eyes, body from vibration – when this kicks in after about 8 hours I seizure!!!

I have very weird dreams that I would describe as nighttime seizures and of course I got up one night and sat in hot water and stopped the process…I have had about 5 near seizures since the real one on 2-3-09!!!

A fourth try at a seizure med might be possible but I did not go to my last EEG because it was basically too loud to go outside!!

The incoming stimuli of the world maroon me here and accelerate everyday as if I am going to have to go through the system here in a small town – my 8 hour ride in the EMS van without food clearly set off my seizure as I dropped officially to in the 38 mg/dL range for the first time ever in my life!!!

The Mayo has a pain clinic (Phoenix) but an ambulance would have to take me there if I were having a seizure and I have not gone down since 2-3-09 but had a few very scary episodes – doctor Jain (my neurologist -- I simply do not trust…on the other hand if Doctor Jain refers me to the Mayo Clinic will Medicare pay for this…?

Doctor Katzman (UNMH) dropped the ball with me on a case no one understands (?) – except Doctor Deshmukh in India and has now retired – but I put out the word to track him down if possible!!!

Doctor Katzman lost me from her system and after calling and arranging to go down there for a new med, a possible tumor, for a CAT scan for an MRE – anything -- they simply said that I did not exist as a patient and would therefore have start again through the system that obviously their computer simply dropped me from existence – but I recognized the secretary and she thought I was a new client…

There are at least 20 neurologists there at UNMH in Alb – but I am at the point where I cannot walk out of the door due to the amplitude of the incoming stimuli!!!

Noise is by far the worst stimulus -- and I wonder what part of the brain that is responsible for those incoming neurochemical impulses? But no I would have to say these come and go by degree and one day tolerable and the next day unfathomable!!!
What if a tumor is causing this acceleration of symptoms? And since three anti- seizure meds have failed – well, I am deeply concerned!

If either “Mary” or Doctor Deshmukh Senior are reading this then I need some advice – these episodes as Mary said = “horror” and Doctor Deshmukh put her on Tegretol which almost made me seizure – and Lamictal put me in bed with a body tremor, suggesting a seizure. And boy do I I have photo-epilepsy as I picked up on a flash/glare rom the parking lot = (right now!!!) a very disturbing flash…is there one drug and one drug only for this?

And I watch the computer screen all day long and the net has those adds that drive one crazy but for me it is either speeded up or down – depending on the day! The regular TV screen cannot be watched because of color saturation and the pops from camera lights there almost drive me crazy – and finally I can hear the frequency of fluorescent lights as if they were buzzing loudly and and way too bright!!!!

Thanks for all your help.

All best,

jw harding

[CrazyinLasCruces]

Dear Doctor Juning:

I believe I responded to your comments with the fact that I felt UNMH in Albuquerque might have such a clinic.

After contacting Doctor Joanna Katzman there and telling them of your recommendations, they told me they had a very long evaluation process and that sometime in June would be the first time they could see me!

They evaluate my case and get back to me with whether or not they are even in the right field to treat me – Katzman is a pain specialist and there are no pain centers in Alb or the state of NM…

It looks to me like I have a case of “pulsating hyperacussis” and Doctor Abhijit Deshmukh (senior) – living in India now – may be one of the few persons in the world familiar with this phenomenon. His patient, “Mary” was clearly suicidal over the list of symptoms she emailed him and he clearly saved her life.

My neurologist in Las Cruces has no knowledge of this very exotic diagnosis – but with him I have gone through three meds – Tegretol, Lamictal, and Dilantin – and all of these seemed to not work or inflame the incoming nature of the outside world and the pain that exists for me – cannot be described – and that is why I finally channeled everything over to you!

Can you possibly contact Doctor Katzman in Alb and expedite my getting into a hospital setting?

Her number is 505-272-3160. She also has an email address which no one could track down!

I have both Medicare and Medicaid if you can possibly charge me for your services!!

My current neurologist and his staff are almost impossible to work with but I am saddled with that situation – for now!

jw harding