As it has been a while now, I thought it would be a good time to update this status thread. As with previous posts, this post is a condensed version of information as it relates to the past few months, but is still rather lengthy.

I have continued to “tweak” my vitamin/nutrient regimen, adding/deleting/modifying supplements and dosages as research continues, and continuing to provide my doctors with updates. I feel this is turning into a never-ending task with trying to find the right combinations of nutrients to alleviate the side effects/damage and continues to be extremely time consuming (see “Commentary” below). My current regimen is as follows and has not changed considerably within the past several weeks:

As mentioned previously, I was put on Toprol XL for hypertension and stayed on that drug for a few months. Eventually however I got the impression that the Vitamin D intake was helping with the hypertension and I eventually weaned myself off of that drug. I then began taking magnesium taurate again. Thus far blood pressure has remained pretty well under control.

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Also as mentioned previously, Acetyl-L-Carnitine (along with Alpha-Lipoic Acid added shortly after) has helped with many of the “neurological” problems (perhaps more accurately defined as neuropsychological problems), which were brought on by the medications. I had experienced significantly reduced mentation, intense “brain fog”, and chronic fatigue (both mentally and physically) for the better part of the past several years. This in itself had been excruciatingly debilitating. The most interesting thing regarding starting these supplements (ALC and ALA) was an almost immediate (within 1-2 days) significant attenuation of the intense “brain fog”. Prior research regarding supplements had indicated to me that it usually takes a period of time before any positive effects can be felt. Through continued study and research, I have learned that carnitine and lipoate are two substances critical to mitochondrial function and energy production at the cellular level (ATP production via fatty acid oxidation within the Krebs Cycle, etc.). I chose Acetyl-L-Carnitine (acetyl ester of L-carnitine) instead of “regular” L-Carnitine as I had read it crosses the blood-brain barrier better.

Another extremely interesting finding I uncovered is the apparent direct relationship between carnitine deficiency (or abnormal metabolism) and the very undesirable/dangerous lipid Lipoprotein(a), or Lp(a).

Here are a couple more information links regarding Lipoprotein(a):
http://www.lipid.org/clinical/patients/1000002.php
http://www.preventive-cardiology.com...rotein%20a.htm

Recall via a previous post in this thread that my Lipoprotein(a) level was over three times the high cutoff point as referenced by the lab http://neurotalk.psychcentral.com/at...8&d=1162756782.

The following Medline studies document this apparent direct relationship between carnitine deficiency (or abnormal metabolism) and elevated Lipoprotein(a):
http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum
http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum
http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum

The following quotes are from the first study above:
It should be noted that I am not overweight, do not smoke, drink, or otherwise have an unusual lifestyle or diet that should predispose a lipid value of this level.

The following Medline study also stresses that certain Conditionally Essential Nutrients (CENs) become essential nutrients, comparable to vitamins, under physiologically stressful conditions and medical practitioners need to be knowledgeable of this: http://www.ncbi.nlm.nih.gov/entrez/q...=pubmed_docsum

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Regarding the constant headaches, “dullness”, and strange sensations in the forehead and surrounding area, these have continued and I have found nothing as yet that seems to provide much help. I had been put on various medications for pain over the past several months such as Neurontin (Gabapentin), Lyrica (Pregabalin), and Flexeril (Cyclobenzaprine), but none of these seemed to help.

Through further study and research, including anatomy of the head and scalp, I was able to determine the source of the headaches. The pain primarily tracks along the Ophthalmic branches of the Trigeminal Nerves (5th set of cranial nerves) in the area of the Supraorbital Nerves. Therefore, it appears that I have Supraorbital Neuralgia, probably of the “atypical” type. As apparently with all cranial nerves, the supraorbitals (trigeminals) are paired, and the right set of nerves appears to be more damaged than the left. After sharing this information with my doctor, I have recently been receiving nerve block injections. These have provided some relief, but don’t seem to last very long. I am also experimenting with topical anesthetic cremes prepared by a local compounding pharmacy.

I also received acupuncture for this condition for a good amount of time, but this didn’t seem to help very much either. The acupuncturist (OMD doctor) was however quite knowledgeable regarding nutrition and supplements. Even with the recommendations he provided, he could not order blood tests to confirm any additional deficiencies. OMDs, as well as apparently most other practitioners (other than MDs), are not allowed to order blood tests where I live. (I think this is a tragedy, see “Commentary” below).

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I have recently found a couple labs, in addition to SpectraCell http://www.spectracell.com/, that perform nutritional/metabolic type testing. These labs have test profiles that are even more comprehensive than SpectraCell (cover more amino acids, minerals, etc.). I am negotiating with my doctor(s) for additional tests:

Metametrix Clinical Laboratory http://www.metametrix.com
Genova Diagnostics http://www.gdx.net

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Through all of my research I have now amassed several hundred web links relating to evidence based vitamin/supplement research (mostly links to Medline/PubMed studies, etc.) categorized via nutrient type. I have documented many in this forum so far and will plan to continue to add information as time permits.


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Commentary (subject to editing):
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With all due respect to the medical community, my experiences over the past several years leads me to believe that there is a severe lack of knowledge of nutritional aspects of health with many (most?) medical doctors in the United States. I have taken every drug and followed every recommendation given and continued to decline. Amazingly part of my “treatment” included “therapy” and the use of various psychotropic drugs. I told every doctor that I believed the problems were due to the medications I was already taking and the response was always (in round-about ways) that this was not possible. In the history of the world, does anyone know of a case where “therapy” and adding more drugs solved significant drug-induced vitamin/nutrient deficiencies? Clearly drug-induced nutrient depletions/deficiencies appear to be the root cause of all of the aforementioned issues. It was not until I had spent the better part of the last 3-4 years on the internet researching (and dealing with severe “brain fog”, etc.), finally finding information that began to explain my symptoms, taking this evidence into the doctors, and (for the most part) requesting the appropriate tests. Fortunately the doctor I’m seeing now appears open to dealing with nutritional health, but I am still taking copies of Medline studies, etc. in with me to back up everything that I discuss.

I do not blame the doctors as all were very intelligent and I believe they did all they knew to do. I believe the responsibility rests squarely with the U.S. Food and Drug Administration (FDA) for failing (or refusing) to provide guidance for nutritional intake with the use of prescription drugs. The following is a quote from pp. 10-11 of the Drug-Induced Nutrient Depletion Handbook, 2nd Edition, of which I own (this book, written by four RPhs (Registered Pharmacists), one being a PhD, appears to now be discontinued from the Publisher, but information may still be found here http://neurotalk.psychcentral.com/sh...postcount=14):

With the evidence based information that I have collected and stored here http://neurotalk.psychcentral.com/sh...5&postcount=14, there should be no question of the importance of these issues. Although it might be argued that the majority of the drugs I have taken are as yet “undocumented”, with the research of the pharmacology/action of the primary drugs I have taken over the long-term and corresponding correlations to other drugs (documented within the first post of this thread), I believe I have provided ample evidence as to the “cause and effect”. Also, with the FDA adopting processes such as “collecting funds directly from the drug manufacturers”, for example as referenced http://neurotalk.psychcentral.com/sh...95&postcount=6 and http://www.fdastudy.com/, it makes one wonder if the “foxes are paying the chickens for permission to guard the coop”.

Please do not misunderstand. As stated previously, I am not against the use of prescription drugs. In fact I still need them in order to sleep. The issue, as I have clearly referenced, is the apparent failure of the responsible government entity to provide guidance in an area in which the amount of evidence appears overwhelming. Please note that I have provided detailed documentation of all associated items.

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All of these issues over the years have taken a toll on myself and my family. I have been unable to work for the past several years, have spent many thousands of dollars seeing doctors, getting “therapy”, etc., have depleted a substantial portion of my life’s savings, and it may have destroyed my previous professional career. I have also spent the past few years of my life (full time as I have felt like it) researching why I continued to have these issues. I had considered applying for disability, but having been without a solid diagnosis and reading other “horror stories” of people waiting for years and still not getting approved, it seemed likely that this would be an uphill battle. Perhaps I may now have the evidence needed, I’m not sure.

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Any comments regarding any of this would be appreciated, especially from people with backgrounds in medicine, biochemistry, life sciences, etc. Any additional recommendations regarding supplements would also be appreciated.