Patient Overview

A recap of Patient's history is highly beneficial/crucial at this point.

Around the time patient was turning 50 years old, patient tried to communicate to daughter that a problem in the brain was occurring, yet little explanation or details were given about what exactly was happening. Patient mentioned something about issues involving confusion or other supposed cognitive issues, yet there appeared to be no concern or cause of alarm from the family. No symptoms were visible from members of the family. Patient was convinced of having cancer, yet no confirmed reports ever surfaced from doctors. Patient appeared to have some sort of psychosis related theory.

At age 53 Patient experienced a blow to the head after being struck by a steel parking lot gate. No hospital visit occurred - patient did not lose consciousness.

Patient did experience at age 56 some depressing feelings when daughter moved away and got married.

Patient received positive mood lifts from taking DHEA, however use was discontinued due to hair loss.

A few years went by and then patient began to show signs of paranoia that family misunderstood to be a relationship conflict pertaining to a family member. Then, hallucinations, delusions and disturbing paranoia all began to surface and become very stressful for Patient and noticeable by family members. When evaluated by a doctor, Patient was given medication for supposed depression. The drug, Celexa was prescribed but it did not reduce patients paranoia, rather it sent Patient into a heightened, very paranoid state.

Celexa was halted and then switched to a different medication (an anti-psychotic).

Patient experienced continued paranoia and hallucinations while on Abilify.

On Respirdal, Patient's cognitive functioning was significantly reduced along with diminished personality. Patient also suffered from Tardive like symptoms, in which Patient's eyes would continuously close/want to stay closed involuntarily. This occurred within days of taking the drug. It was then halted due to these alarming/disturbing side effects.

Patient also tried Seroquel, which also produced negative side effects.
When seizures were suspected, Patient tried Tegredol and Keppra. Patient had a serious reaction to Keprra, which involved increased anger and paranoia.

In looking back on everything the past few years, one of the most crucial factors to point out is that as soon as Patient began treatment with psychiatric drugs as well as anti-seizure drugs, PATIENT HAS SLOWLY DECLINED IN MANY AREAS. PERSONALITY HAS DIMINISHED, THINKING ABILITY, RATIONALIZING, REMEMBERING DETAILS -- HAVE ALL BECAME A STRUGGLE. PATIENT'S HALLUCINATIONS AND DELUSIONS HAVE NOT GONE AWAY. Patient became less involved in social activities and has in the past 6 months suffered physical symptoms and episodes that the Family has never before witnessed in Patient.

Patient has not improved but clearly is struggling from something that is affecting the ability to live a normal life. Those who know Patient well can see that Patient is not the normal self they once knew.

Some friends have even described Patient to appear to be in a "drugged like state."
Patient is aware of some of the problems that are occurring with speaking, getting up, walking, pain side effects, etc and is very discouraged. At times the Patient's personality does seem to surface with moments of laughing and emotion expressed. Yet Patient has suffered so many physical symptoms it has interfered with many daily activities.

While on Zyprexa and Lamictal Patient has experienced decline in energy, fainting episodes, dehydration, dizziness, sleep disturbances, trouble carrying on conversations, troubles with word finding, memory disturbances, delusions, hallucinations (some related to smell). back pain, leg pain, weight gain.

When physical problems related to getting out of a chair or bed began to surface, family members noted that Patient could get up with no help if a motivation had occurred like the phone ringing. However, if Patient was sitting and then decided to get up, Patient would have difficulty initiating that act and gaining the muscle strength to rise out of a chair. In the past couple of months, Patient has needed more and more help getting out of a chair or bed regardless of a stimulant/outside motivation present.

At this point it is hard to know whether or not the physical problems and night time issues are due to an undiagnosed disease or condition, or a result of being medicated by the WRONG drugs. Patient has suffered MORE BURDENSOME/NEGATIVE side effects than one should undergo for drugs that should be providing relief from a suspected problem/illness.

Since patient's psychiatric symptoms did not significantly improve on medication, there appears to be no clear behavioral illness or psychiatric illness. From a common sense standpoint, if psychiatric illness was the main health problem, drugs should have done a much better job of correcting Patient's symptoms, especially after undergoing treatment with several types of psychiatric drugs. Also, medical professional has indicated that behavioral illness onset is rare for Patient's age group.

Regardless of what the real problem is, the Family has witnessed a gradual decline.

We can say with assurance that Patient was significantly altered once Anti-psychotic medications were introduced for treatment and has not returned to normal self -- the self that Patient's family remembers.

Members of the family still suspect that there could be an allergy, or chemical imbalance/deficiency that could have produced the initial symptoms of paranoia a few years back. Patient has suffered stomach/gastrointestinal upset on a regular basis for many years.
Perhaps there is a link that to this day, has still not been identified.
Likewise, the Family is interested and open to the natural medicine approach, as it may provide a valuable/added evaluation that has not been considered by all of the doctors involved up to this point.

Patient has not been clearly diagnosed, yet the journey continues and the family has not given up on finding the right treatment for Patient.

Currently, patient is being evaluated and tested again for seizures.

Patient Update

Since being released from the last hospital stay in early June, patient has been experiencing on-going physical problems that make it difficult to get out of bed or out of a chair without assistance. Patient has experienced frequent sleep walking episodes throughout the night in which patient has difficulty moving around without falling/passing out. Patient grumples/groans during these episodes. Cannot recall these episodes the next morning.

Upon leaving the hospital, Patient was prescribed a higher dosage of Zyprexa (10mg) and 150mg of Lamictal, whereas patient was previously taking 7mg and 150mg respectively (no increase). Patient had severe problems walking around and complained of pain in the legs. Could not stand up straight without discomfort. Hallucinations and delusions had not improved. Upon hearing of this, the doctor decreased the medication down to 5mg Zyprexa and 100mg Lamictal. Psychiatric doctor believes patient has been suffering from a temporal lobe problem and has suspected seizures to be a culprit, therefore has prescribed these medications.

Since being reduced to 5mg, the problems with walking decreased. The degree of hallucinations and delusions reduced as well but did not completely go away. Fainting spells started to occur more often. Patient experienced 4 episodes in one day. Patient has been unable to sleep throughout the night for months.

Patient Update June 21 2008

Received report that Patient experienced 4 drop attacks a day after beginning DHEA, RALA and ZINC. Two of the drops occurred without the Patient's knowledge. In the preceeding year, drop attacks have not been experienced prior to starting supplements. Recommended DHEA be withheld and followup discussion Saturday evening on progress. Patient is on dose of 100mg Lamictal and 5mg dose of Zyprexa daily. Patient was on unknown dose of furosemide since stay in hospital and has discontinued use. Flurosemide was prescribed because of severe ankle swelling at the time of the recent event leading to the hospitalization.

Pfeiffer Treatment Center, Warrenville, Illinois

The Pfeiffer Treatment Center was recommended by a reader.

"The Pfeiffer Treatment Center is a not-for-profit medical research and treatment facility in Warrenville, Illinois specializing in research and treatment of biochemical imbalances."

"PTC takes a unique, integrative approach to identify and treat the root metabolic causes of these symptoms with a multi-disciplinary clinical team involving physicians, nurses, dietitians, pharmacists and other clinical specialists."

Patient Update June 14 2008

One year on Lamictal. Patient was hospitalized for a week for an event that was classified as severe dehydration. The medication was not being managed by the family, but by the Patient. Upon release from hospital, the family requested the dose being reduced to 100mg daily and an effort to wean Patient off of Lamictal. Family also requested dose reduced for Zyprexa to 5mg. Patient's condition after a year on these two drugs can be characterized as "drug suppressed" and not making any progress towards improving condition. Drugs controlled Patient's bad symptoms (paranoia and mania) while also robbing patient of experiences of joy in life. Patient is not getting quality sleep, may be sleep walking now, was seen urinating in corner of bedroom at 3AM, and walking around without eyes open. Beginning course of low histamine treatment based on past experience with not responding well to SAMe. Asked family to provide the Patient DHEA, ZINC and R-ALA for the next week.

"Histamine Metabolism"

Histamine Metabolism

What is histamine and why is it so important? Carl Pfeiffer studied more than 20,000 people with schizophrenia and determined that 90% of them fell into three bio-chemical subgroups: high histamine, low histamine, and pyrroluria - hence the term “The Schizophrenias” (Pfeiffer, 1970; Walsh, 1997b). Histamine is a reflection of neurotransmitter availability. Histamine is integral in balancing the electrical activity of the nucleus accumbens, which is an area of the brain responsible for behavioral responses, filtering incoming sensory information, and communicating with the hypothalamus, ventral tegmentum, and amygdala (Shoblock & O’Donnell, 2000; Otake & Nakamura, 2000; Chronister et al, 1982). A plethora of research has determined that people with schizophrenia have poor ability to filter incoming sensory information. It has also been reported that 15-20 % of people with schizophrenia have high whole blood histamine levels and another 30-40 % of people with schizophrenia have low whole blood histamine levels (Heleniak, 1999; Pfeiffer, 1988; Heleniak, 1985; Chronister & DeFrance, 1982; Rauscher et al, 1977; Pfeiffer, 1972a).

A person with schizophrenia who has high histamine is under-methylated (Walsh, PTC- Ref. B; Heleniak & Frechen, 1989). A person with schizophrenia who has low histamine is over-methylated (Walsh, PTC- Ref. B; Heleniak & Frechen, 1989). Taking detailed patient histories is key (Jackson et al, 1998; Edelman, 1996; Jaffe & Kruesi, 1992; Pfeiffer, 1988; Walsh, PTC - Ref B). People with high histamine have been found with typical symptoms of high intelligence, thought blanking, low grade hallucinations, and thought disorder, perfectionism, competititiveness, obsessions, compulsions, suicidal and seasonal depression, defiance, and phobia.

High histamine individuals are inherently high in folic acid. Although folic acid is used along with B-12 in the production of methoionline it is also involved in histamine production along with B-12. Consequently B-12 and folic acid are strictly avoided in high histamine patient care. These patients need to avoid multi-vitamins.

People with low histamine have been found with typical symptoms of under-achievement, more severe thought disorder and hallucinations, paranoid thoughts with less pronounced obsessions, suicidal depression, cyclic or suicidal depression, and anxiety. (Jackson et al, 1998; Edelman, 1996; Jaffe & Kruesi, 1992; Walsh, PTC - Ref. B).

Excess copper and zinc defiiciency, discussed below under heavy-metal overload, are typical low histamine traits that need to be addressed (Sandstead, 1994; Wallwork, 1987; Pfeiffer & Braverman, 1982; Walsh, PTC - Ref. B)

Metal Imbalance

Metal imbalance is associated with schizophrenia, behavior disorders (including ADHD), and hormonal depression (Walsh, PTC- Ref.C).

Copper excess causes brain dopamine levels to rise in low histamine schizophrenia. “Copper poisoning with zinc deficiency will explain the present dopamine theory of simplistic schizophrenia since this condition occurs only in one-half of patients labeled schizophrenic”, that is, in low histamine schizophrenia (Pfeiffer, 1987b). Paranoia is also associated with elevated copper (Pfeiffer & Iliev; Walsh, 1997b). Copper oxidizes catecholamines such as dopamine and therefore propagates neurotoxin formation (compare "Niacin Section" above). Zinc imbalance is associated with central nervous system disorders such as schizophrenia and autism and several other pathologies (Walsh & Usman, 2001a; Ebadi, 1995; Walsh, PTC- Ref. C).

Some nutrients help remove heavy metals but environmental exposure must be addressed. This includes restrictions on diet and the elimination of environmental factors such as copper tea pots, copper sulphate (jacuzzi or swimming pool water), bad drinking water, prenatal vitamins, copper IUD’s, etc. (Walsh, PTC- Ref.B). Drugs such as neuroleptics, antibiotics, antacids, cortisone, tagamet, zantac, diuretics, and birth control pills, etc. may exacerbate copper overload. (1)

(1) Copyright © 2002 by Raymond J. Pataracchia B.Sc., N.D.

Vitamin B3 Test results

Patient has received test results back from primary care doctor showing that patient is extremely deficient in vitamin B3 (Niacin). Since hearing the news, patient is back on Niacin supplements. Deficiency may be explanation behind behavioral symptoms, weakness, bowel problems, forgetfulness and insomnia. We are waiting for the results from the other mineral & metals that were evaluated.

Patient Update Nov 23, 2007

A full week before admittance to the Epilepsy center at Henry Ford hospital, the Patient decided to discontinue prescribed 150mg of Lamictal -- only taking half and stopped taking Zyprexa. After the hospital visit, the doctors encouraged Patient to go back to taking the full 150mg dosage for seizure prevention. However, within a few days of taking ONLY Lamictal as prescribed, profound negative effects became obvious in Patient. Patient was struggling to maintain any type of focus: appeared to be in a total fog. Cognitive ability was extremely compromised. Patient was in constant motion wither going to sit or going to lay down, could not get comfortable, making 6 trips per hour to lay down. Patient could not understand easy questions and was feeling nausea, poor appetite, profound weakness being unable to get up from sitting position without assistance, poor posture, standing in place staring for extended periods of up to 10 minutes. It was so bad we were almost going to take patient to the hospital. On Nov. 21 Patient resumed taking Zyprexa prescribed dose and stopped Lamictal. Within 24 hours, Patient regained muscle strength, cognitive ability returned, nausea absent, appetite normal, 90% of excess sitting and standing absent. @48 hours emotions improved, cognitive speed improved, posture improved.


We should request Patient see a cardiologist for the orthostatic hypotension, and determine if current Psychiatrist can refer her to one. We have an appointment for Patient's B 12 levels and Thyroid to be tested. We would like to know Patient's histamine, copper, methylation, homocystene levels to specifically find vitamin deficiency and behavior subtyping. (There's a hospital outside of Chicago that treats patients based on these results).

We would like to know if there are any other specialized doctors that can be recommended for further testing or evaluation for underlying medical issue.

vitamin B12 deficiency

We are curious if there could be an underly medical condition with
dementia-like symptoms such as vitamin B12 deficiency.
(Patient's symptoms appear in bold font below. Symptoms are either
current or experienced at one point or another)

Neuropsychiatric Manifestations of Vitamin [B.sub.12] Deficiency:
Peripheral nervous system involvement.
Symmetric peripheral neuropathy, beginning with
symmetric parasthesias of the lower extremities,
can ascend to eventually involve the upper extremities;

hyporeflexia may be present; occasionally autonomic
neuropathy occurs, which can present as orthostatic hypotension.

Spinal cord involvement.
Dorsal column involvement: loss of position and vibration sense,
ataxia,  broad-based gait, and, occasionally, Lhermitte's sign.
Lateral column involvement: weakness and spasticity
(spastic paraparesis), urinary and fecal incontinence,
impotence, hyperreflexia, clonus, and
Babinski reflex may be present.
Subacute combined degeneration.
Spinal cord involvement and peripheral neuropathy.
Visual impairment.
Retrobulbar neuritis, optic atrophy, and pseudotumor cerebri.

Psychiatric manifestations.
Dementia, hallucinations, 
frank ("megaloblastic madness"),
paranoia, depression, violent behavior, and 
change in personality

Above information taken from
http://findarticles.com/p/articles/mi_m0689/is_n6_v41/ai_17913640

"Vitamin [B.sub.12] deficiency is thought to be a continuum with five stages.[9] These stages include: I, normality; II, negative vitamin [B.sub.12] balance; 111, vitamin [B.sub.12] depletion with possible clinical signs and symptoms (reversible neuropsychiatric findings); IV, vitamin [B.sub.12]-deficient erythropoiesis with possible clinical signs or symptoms (potentially reversible neuropsychologic symptoms); and V, vitamin [B.sub.12] deficiency anemia with probable clinical signs and symptoms, including irreversible lateral column involvement."
http://findarticles.com/p/articles/mi_m0689/is_n6_v41/ai_17913640

http://www.postgradmed.com/issues/2001/07_01/dharmarajan.htm

Some updates & observations

Patient and other members of the family admitted that Patient was dealing with orthostatic hypotension-like episodes several years back before Patient went on any psychiatric meds. Patient said thyroid testing in the past revealed over-active thyroid.
Patient is currently suffering from memory problems and cognitive impairment.
Patient scored low in neuropsychological testing taken in the epilepsy unit of the hospital by the neuro psychology department. Doctors evaluating patient recommended a complete neurological work-up. Suspects there could be dementia symptoms. Doctors also suspected there could be an issue with the autonomic nervous system, with regard to the orthostatic hypotension. Patient's heart beat is normal, no other heart irregularities found. Some of our research on dementia indicates patients struggling with dementia-like symptoms could actually be suffering from a vitamin B-12 deficiency.

"Because the symptoms are almost identical, many health problems are often mistaken for Alzheimers and other age related dementia. But, the problems causing the symptoms are usually treatable if detected early enough. Prescription drugs interactions and side effects, vitamin B12 deficiency and dehydration most commonly produce false symptoms of dementia. (According to Consumer Reports on Health, "Any new health problem in an older person should be considered drug induced until proven otherwise.")In other words, symptoms that some people (including many doctors) often dismiss as a "normal part of aging" — really aren't. "
http://www.aging-parents-and-elder-care.com/Pages/Age_Dementia_Next_Steps.html

The following tests should be administered:

The tests may involve some or all of the following, many of which are designed to rule out other possible causes for your loved one's problems:

• An evaluation of memory and mental skills.

• A physical exam, including a review of family medical history, to detect other medical problems, including possible interactions between prescription drugs, over-the-counter medications, herbal supplements, vitamins and/or mineral supplements. Many foods can also cause unexpected interactions with prescription medications.

• A nutritional evaluation to determine if dietary problems or improper eating habits may be causing the problem.

• Blood tests, including tests for vitamin B12 and folic acid deficiencies, thyroid hormone imbalances, anemia, etc.

• EEG (electroencephalogram).

• A neurological exam to rule out other disorders of the brain such as Parkinson's disease, hydrocephalus (fluid accumulation in the brain), prior strokes and mini-strokes, brain tumors, etc.

• Brain Scan (CT or MRI).

Patient Update November 18, 2007

ORTHOSTATIC HYPOTENSION was the only condition to come out of 8 days of tests at a Henry Ford Hospital epilepsy center. We have not had a full briefing from the doctors yet. Patient is returning home tomorrow. We are looking at information regarding blood pressure and blood supply to brain now.

Note that low blood pressure is a possible Zyprexa side effect - Patient has been off Zyprexa since a week before Hospital stay.


Entry: quote from "Amalgam Illness diagnosis and treatment" by Dr. Andrew Hall Cutler PhD PE

PAGE 159
"Methyl donors and compounds involved in methlyation metabolism help the liver transport fats, help with one part of phase 2 metabolism, and have other effects in the body - most notably antidepressant effects through increased brain serotonin."

... "Methylation both increases and controls histamine levels. Your body cannot make methyl groups - it needs to get them from your diet. SAMe, choline, TMG, folate and B12 all have similar effects via methyl metabolism, and lecithin, phosphatidylcholine and phosphatidylserine can sometimes also act as methyl donors in the brain."

links

http://www.latitudes.org/forums/lofiversion/index.php?t2056.html
http://www.diagnose-me.com/cond/C376825.html
http://www.diagnose-me.com/cond/C447056.html
http://www.ebiologynews.com/1523.html
http://www.ebiologynews.com/2754.html
http://health.yahoo.com/nervous-overview/drop-attack/healthwise--hw214611.html
http://www.alternativementalhealth.com/articles/walshQZ.htm
http://www.vitaminstuff.com/vitamin-b9-folic-acid.html
http://www.vitaminstuff.com/vitamin-b9-folic-acid-2.html

http://www.drugdigest.org/DD/DVH/HerbsSideEffects/0,3925,552122%7CLecithin,00.html

Hospital Visit

Patient is undergoing a week long hospital visit in the hospital unit that specializes in the treatment and evaluation of seizures. Patient has stopped medication to return to baseline and is being monitored with medical equipment. Behavior is also being monitored as well. Current team of doctors are looking for possible causes of seizure and psychological symptoms.


Info on aspartame & seizures, psychiatric symptoms:
http://www.mpwhi.com/aspartame_and_psychiatric_disorders.htm
http://www.holisticmed.com/aspartame/adverse.txt

Patient Update October 11, 2007

Many thanks to a reader for comments regarding the histamine levels method of determining the right vitamins and supplements. You can read the comments in the July 16 2007 post. Of interest to me now is the histamine levels and how our information should be split along those histamine levels. I am researching this now and have some links and notes to post here for our own reference later:

http://www.ionchannels.org/showabstract.php?pmid=2425593

http://www.ctds.info/5_13_magnesium.html

http://www.answers.com/topic/histamine?cat=health

http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&list_uids=4336944&cmd=Retrieve&indexed=google

http://www.raysahelian.com/ps.html

The Patient began taking soy-phosphatidylserine again a week ago. There's info available which states it would "influence the release of histamine, glucose uptake in the brain" and "when both phosphatidylserine and calcium were added histamine secretion was remarkably stimulated, apparently through the effect of phosphatidylserine on calcium transport across the plasma membrane."

Patient Status: Positive improvement. Interest in religious activities greatly improved/normal and may indicate healing in condition. Trouble finding words occasionally but flow of thought and conversation improved.

Patient Update July 16 2007

Patient spent the past week in hospital under supervison and all tests were renewed. Seroquel has been abondoned. Seizures had been increasing up to the time of hospitalization. Hallucinations are now treated with Zyprexa. Initial observations of Patient following release are much better mood and memory as well as the range of topics in conversation significantly improved.

Meal Medication & Dosage

Breakfast: Lamictal 150 mg (1) Pill

Lunch: (No Medication)

Dinner: Lamictal 150 mg (1) Pill

Bed Time: Zyprexa 7.5 mg (1) Pill

Important info about Zyprexa http://www.eff.org/legal/cases/zyprexa/

Patient Update May 23 2007

Spoke with Patient at 9 AM. Thoughts were clear. Patient seemed excessively concerned about feelings or mood.

Patient Update May 22 2007

Patient experienced confusion and drowsiness after a full day on increased dose of meds. (150mg Seroquel at 11PM, 100mg Lamictal 11AM & 5PM) Doctor was called. Patient spoke to Doctor. Decision was made to not change meds yet for a few days.

Patient fell with dizziness at about 1AM (a couple hours after evening meds.)

Patient Update May 17 2007

Patient reported having hallucination again at about 3AM and woke up other family member a few times. This may occur as a result of having taken the drug at 4PM instead of bedtime by mistake. Patient reports today no known side effects from doubling dose of Lamictal.

We should mention that information is available which suggests that Seroquel can lower seizure thresholds and theres a possibility the Neurologist in consult with Psychiatrist prescribed Lamictal as a prevention.

Patient began using a spreadsheet with daily checklist for medications.

Patient Update May 16, 2007

Patient begins double dose of Lamictal on May 17th which becomes 50mg at 11AM and 50mg at 5PM.

Had video conference with Patient for an hour this evening. We discussed how the Patient mistakely took the 100mg Seroquel at 4PM today May 16th and as a result fell asleep between 7-8PM and planned to go to sleep at 11PM for the night. Conversation started at 8PM by phone. We discussed a hallucination that was experienced at 3AM today. We also discussed the hallucination from 3 weeks ago that involved a police visit to the house and the trip to the hospital. It is the same concern for the family member which is being experienced. The hallucinations were being stated as factual events and no fear was associated with the memories of the events during the discussion.

It appears that at least the Psychiatrist has allowed for the possibility that seizure treatment could improve the outcome. Since our posts about Lamotrigine and requests for trials for the Patient largely went ignored up to this point, we are satisifed that the current Psychiatrist perhaps has some prior experience with this matter. During the first consult after release from the hospital the family requested Lamictal samples and this Psychiatrist agreed and provided them. It was just a few days later when the Neuorlogist who had, even as recently as the day before, been stating that seizures were not present, that all the symptoms we have previously posted in the blog were not seizures, the next day prescribed the anti-convulsant Lamictal (Lamotrigine.) And prescribed the increasing dose 25mg x 2, 50mg x 2, 75mg x 2 over the coming weeks. If you've been following the history of this blog up to this point, lets pause for a moment.... Ok, enough said.

Observations of the Patient's progress can be summarized as follows:
1. Clearer thought and speech as compared to Risperdol & Abilify.
2. No motor impediments yet noticed as compared to Risperdol & Abilify.
3. Sleep cycle appears healthy and day wake hours appear normal and longer than without medication.
4. expression of emotion returns.
5. thought disorder which previously occured daily after meals has become very infrequently very late at night near time of night dose of Serquel is due.
6. Patient feels clear thinking enough to drive a vehicle early in the day.
7. Patient has conversations by phone that go without any searching for words and feels this is significant progress.
8. Long conversations are now possible extending beyond an hour where before 5 minutes would have been the limit.
9. Optimism has increased regarding outlook, that we may find a solution and slow or stop the decline and not end up in the same condition as mother at the same age.
10. Patient recalls memories and brings them up in conversation instead of only being able to answer questions.
11. Patient askes fewer questions of family members and experiences less confusion and less thought disorder.
12. Patient experinces little worry where before worry would consume the entire day and be present with serious fears.
13. Patient no longer experienceing leg or muscle weakness.
14. Patient appears to be mentally less affected by blood sugar fluctuations around meal times.
15. Patient remarks being tired of changing drugs (referring to the side effects), and wants the current drugs to work.

Patient Update May 15, 2007

Patient is taking 100 mg of Seroquel at bedtime and 25 mg of Lamictal at 11AM & again 5PM. Patient's psychosis appears to be less frequent.
Patient has initiated conversation more frequently and is able to 'small-talk'. Patient still struggles at times to express complete thoughts/sentences, but not as problematic as previously when at hospital on Atavan, Tegredol, Seroquel.

Both Neurologist and Psychiatrist have agreed that Patient should continue taking the Lamictal, we aren't certain what common conclusion they came to, just that they told Patient to take it instead of just taking Seroquel alone. Patient described having a feeling of a seizure coming on this past Saturday, however Patient said it did not manifest itself into a full seizure. Patient said a feeling/sensation originated in midsection but then wore off before escalating into anything further.

We were told that Seroquel was missed on Friday evening because Patient mistakenly thought it was taken at 4PM and didn't want to over do it at regular time. As a result, Thought disorder was experienced by 10 AM the following morning and significantly at 10PM that next day.

Patient has started to bring up topics related to patient's Christian faith and has expressed the importance of holding onto that faith and remembering it during Patient's struggles. Before, Patient almost seemed removed from this religious/spiritual aspect of Patient's life. The fact that Patient is returning to these thoughts is a sign of improvement. Also, Patient experiences a wider range of deeper emotion now. Patient also expresses care for the feelings of other family members.

Patient Update May 11, 2007

Neuorolgist calls to prescribe anti-convulsant Lamictal and reports that current Psychiatrist was consulted.

Patient Update May 10, 2007

Neurologist calls in AM to discuss diagnosis. Claims that seizures are not present (despite reporting seizure activity from 2nd EEG results in Nov 2006.)

Patient Update May 7, 2007

Patient visits with new Psychiatrist. Seroquel dose is raised to 100mg before bed. During Dr. visit a family member requests Lamictal trial.

Dr. begins seziure discussions with Patient. It become clear at this point the seizure information is completely new information which was not provided by other doctors from the same hospital system with 3 previous EEG tests showing possible activity.

Lamictal is provided as 25mg AM and 25mg PM for two weeks.

Patient Update May 6, 2007

Patient is still experiencing psychosis to the same degree of what it was before hospital visit. Fifty mg of Seroquel has been taken at bedtime since being released from the hospital. Psychosis symptoms were noticeable on Thursday evening, 3 days following release from hospital. Patient also communicated feelings of depression Thursday evening. Psychosis / thought disorders were continous throughout the day on Saturday and Sunday. Patient sees doctor May 7th for first consult after hospital release by Psychiatrist in same hospital system, once previously visited before the Keppra event. Patient has experienced headaches in the upper/back region of her skull. Auditory hallucinations have occurred since being home from the hospital.

Obervations are that the hospital medicines which were tested or tried are now worn off and Seroquel is the only medication being used at this point.

Time for a Specialist

As a result of our in depth research coupled with our understanding of the Patient and medical history, we are dissatisfied and frustrated with the current situation and how the doctors have handled Patient. We feel as though the doctors have only scratched the surface and have shown little concern or desire to dig deeper and consider other angles.

Based on Patient's unique symptoms and poor response to medications prescribed up to this point, and nothing hopeful from Patient's doctors, we have reached a point of frustration. it appears we've exhausted our options locally with respect to finding a Physician with expertise in dealing with Patient's unique blend of symptoms. Considering the delicate nature of the situation with respect to potential damage occurring from taking wrong medications, we cannot afford to keep Patient on current medication for psychosis for long when we know Patient's seizures aren't being addressed and cognitive abilities are being strongly compromised by the current drug.

We need to find a doctor as soon as possible who can help transition Patient off of the risky medication currently being used for psychiatric treatment.
At this point we feel it would be beneficial to find a Specialist familiar with the connections between Neurology and Psychiatry. We are looking into brain doctors with experience dealing with people suffering from similar problems as Patient (those dealing with patients whose case has been passed back and forth between neurologist and psychiatrist). We will be in contact with the insurance company to determine if two doctors in consideration participate with Patient's insurance. Depending on results we may need to perform further research to find a few more Specialists that deal with seizure patients with psychosis. We are open to recommendations. Please comment with known name of doctor practicing in this field of medicine.

CRITICAL INFORMATION ABOUT SEIZURES WITH PSYCHOSIS SYMPTOMS AND RISK OF MIS-DIAGNOSIS:
http://www.psychiatrictimes.com/p950927.html

For Further Consideration

In doing research, I found this information which may be beneficial. One patent was diagnosed with with CP TLE with evidence of bipolar disorder caused by TLE. This patient was given 2500mg of Depokote (aka Valproic acid) and 50mg of Seroquel. This patient claimed that after suffering affects of this disorder for 20 years, never felt better since treatment with these medications.

Refer to this article later with regards to how it deals with glutamate toxcicity:

http://www.nature.com/tpj/journal/v4/n5/abs/6500269a.html

Refer to this article regarding Valproic Acid:

http://en.wikipedia.org/wiki/Valproic_acid

Lamotrigine Info - Medication Candidate for seizure relief

Lamotrigine Message boards-

http://www.bluelight.ru/vb/archive/index.php/t-208772.html

Patient Update

April 30, 2007

Patient is now home following the 8 day hospital stay.
It is evident that the doctors have decided to focus their attention on treating our family member as a psychiatric patient by perscribing a neuroleptic medication, Seroquel to control psychosis even though patient's EEG results show seizure activity in the temporal lobe.

Doctors we have dealt with in psychiatric field have been quick to medicate the behaivoral symptoms. Seizures could be causing the psychosis, but the psychiatrists are not addressing that. Patient was given seizure medication during hospital stay but we suspect it was discontinued toward the middle of hospital stay.

Patient was not sent home with any seizure medication even though Patient has experienced distinct symptoms that mirror those of temporal lobe epilepsy, including overwhelming/intense emotion connected to episodes of psychosis experienced from time to time, in this case emotion has consistently been fear. Periods of depression and lack of motivation have been common in between episodes of fear/psychosis.

Instead of leaving hospital with seizure medication, patient left with neuroleptic medication. Neuroleptics are known to induce seizure activity.
Patient is currently experiencing extreme inability to carry on a conversation, difficulty processing information quickly, much trouble with articulating thoughts. Patient's symptoms from Seroquel are strikinly similar to ones experienced in previous use of Respirdal. Overall cognitive functioning has decreased significantly to a pathetic level. Patient's cognitive problems are worse with Seroquel.

The neurologist with EEG results has been unable to come up with a diagnosis. We suspect patient is suffering from temporal lobe epilepsy with psychosis appearing symptoms. We feel patient should be treated for seizures, not psychosis. Patient experienced seizures as an infant and suffered from a head injury within the past 10-15 years and complained of undisclosed symptoms following that. Patient recently experienced episodes of passing out, blacking out, minor shaking and episodes of dizziness and tingling. Patient's psychosis symptoms consistently involve intense feeling of fear in every episode with periods of depression, lack of motivation, lack of energy experienced in between. Patient has mentioned a sensation of motion rising up from midsection (evidence of aura/partial seizure). Patient has experienced smells and tastes that were out of the ordinary.

Patient Update April 26, 2007

Prescribed meds update. This list was provided Thursday April 26 by the hospital. Most of this information is from the Wikipedia.

---

Ativan (Lorazepam) 1MG/6hrs possesses all five principal benzodiazepine actions (sedative/hypnotic, muscle relaxant, anxiolytic, amnestic and anticonvulsant), but to different extents. Lorazepam also has found use as an adjunct anti-nausea drug. Lorazepam is a potent drug and its unique pharmacological properties underlie both its drawbacks and its advantages. Lorazepam may be safer than many other benzodiazepines in patients with impaired liver function because it does not require hepatic oxidation, which means that, similar to oxazepam, it is less likely to
accumulate to an extent where it causes adverse reactions.[2] On regular use, lorazepam builds up to maximum serum levels after only 3 days and longer term use does not result in further accumulation. Similarly, on discontinuation of regular use, lorazepam serum levels become negligible after 3 days and undetectable after a week. Lorazepam is thought to bind more strongly to GABA receptors. Lorazepam is thus more predictable when used intravenously for status epilepticus, both in regard to its more prolonged anti-seizure effects and in less drug accumulation in the patient's body (causing prolonged sedation after effects), such as is seen when diazepam injections have needed to be repeated when their effects wore off. Lorazepam's inactive metabolite is another advantage over diazepam in this setting.

++Acute therapy of catatonic states either alone, or preferably together with haloperidol as lorazepam can have paradoxical effects). Long-term treatment of otherwise resistant forms of petit mal epilepsy. Short-term treatment of insomnia, particularly if associated with severe anxiety. Treatment of anxiety disorders (especially Panic Disorder)

--Benzodiazepines in general may sometimes unmask suicidal ideation in depressed patients (indirectly, through disinhibition or fear reduction, rather than through any known direct effect). Though relatively non-toxic, the concern is that benzodiazepines may inadvertently become facilitators of suicidal behaviour. Lorazepam should therefore not be prescribed alone in depression but only together with an appropriate antidepressant and at the minimal dose required. Long term therapy may lead to cognitive deficits, especially in the elderly, who may already be more prone to forgetfulness, but this is reversible after a period of discontinuation. The likelihood of abuse, dependence and withdrawal symptoms is thought to be substantially greater with lorazepam relative to other benzodiazepines because of its particular properties: (a) Lorazepam binds relatively strongly to the GABA receptor complex. (b) Lorazepam has a short serum half-life and its effects wear off quicker due to it having no active metabolite, in contrast to diazepam. (c) Lorazepam is highly potent, making even 0.5 mg a significant dose reduction. In the UK the smallest available tablet strength is 1 mg, accentuating this problem.

Addiction is not a unique problem to lorazepam but for the reasons given above lorazepam is best used short-term to minimise this risk. Coming off lorazepam is more realistically achieved by, first, gradually changing over to an equivalent dose of diazepam and, secondly, stabilizing the patient on diazepam before contemplating dose reductions. This stabilization period is important since lorazepam levels (and effects) fluctuate more than those of diazepam: anxiety symptoms are more noticeable when lorazepam wears off and symptom relief more drastic when taking another dose, which may reinforce psychological dependence. Diazepam is here best administered once daily to tackle this aspect of dependence. The dose is reduced gradually over a period of months or years, depending on prior dose and duration of use.

---

Seroquel (Quetiapine) 25MG/PM which acts antagonist on - D1 and D2 dopamine and 5-HT1A and 5-HT2 serotonin receptor. Also has an antagonistic effect on the histamine H1 receptor.

Quetiapine has the United States Food and Drug Administration (FDA) and international approvals for the treatment of schizophrenia, treatment as an adjunct to either Lithium or Divalproex, and acute mania in bipolar disorder. Additionally, in October 2006, Seroquel was approved by the FDA for the treatment of depressive episodes associated with Bipolar I (or Bipolar-II) Disorder.[1][2] Currently, Seroquel is the only agent approved for this indication—as a single agent monotherapy. It is also used off-label to treat other disorders, such as post-traumatic stress disorder, restless legs syndrome, autism, alcoholism, hallucinations in Parkinson's disease patients using ropinirole, Tourette syndrome,[3] and as a sedative for those with sleep disorders or anxiety disorders.

--may lower the seizure threshold,the development of diabetes, significant risk of development of the incurable neurological disorder tardive dyskinesia with any prolonged use. Constipation, headache, and mild weight gain. Less common side effects (less than 2% of patients) include: abnormal liver tests, dizziness, upset stomach, substantial weight gain, a stuffy nose, and increased paranoia. Of note is the somnolence/sedation that occurs with Seroquel - as this side effect is most pronounced within the first 7 days of treatment and decreases over time thereafter. There is a significant risk of development of the incurable neurological disorder tardive dyskinesia with any prolonged use of any neuroleptic drug. However, quetiapine is believed to be less likely to cause tardive dyskinesia[7][8] somewhat less often than typical antipsychotics based on the data sources which point to placebo-level incidence of extrapyramidal side effects (a claim that only Seroquel can make, based on current research). The rare, but life-threatening, neuroleptic malignant syndrome. Weight gain can be a problem for some patients using quetiapine, by causing the patient's appetite to persist even after meals. However, this effect may occur to a lesser degree compared to some other atypical antipsychotics such as olanzapine or clozapine. Like other atypical antipsychotics, there is some evidence suggesting a link to the development of diabetes, however this remains unclear and controversial.

---

Tegretol (Carbamazepine) 200MG/12hrs an anticonvulsant and mood stabilizing drug, used primarily in the treatment of epilepsy and bipolar disorder. It is also used to treat schizophrenia and trigeminal neuralgia.

Mechanism of action is relatively well understood. Voltage gated sodium channels are the molecular pores that allow brain cells (neurons) to generate action potentials, the electrical event that allows neurons to communicate over long distances. After the sodium channels open, to start the action potential, they inactivate, essentially closing the channel. Carbamazepine stabilizes the inactivated state of sodium channels, meaning that fewer sodium channels are available to open, making brain cells less excitable.

--drowsiness, motor-coordination impairment and/or upset stomach. cardiac arrythmias, blurry or double vision and/or the temporary or mild loss of blood cells or platelets. Underactivity of the thyroid gland may be provoked, so thyroid function tests are advisable every year or two. Small reductions in white cell count and serum sodium are common. reports of a bizarre auditory side effect, whereby patients perceive musical notes about a semitone lower than their actual pitch.

AND...

may aggravate juvenile myoclonic epilepsy, so it is important to mention any history of jerking, especially in the morning, before starting to take this drug.

---

Desyrel (Trazodone) 50MG/PM serotonin reuptake inhibitor and is also a 5-HT2 receptor antagonist.

--Episodes of complex partial seizures have been reported, possibility of discontinuation syndrome if the medication is stopped too quickly. Care must therefore be taken when coming off the medication, usually by a gradual process of tapering down the dose over a period of time. Elevated prolactin concentrations have been observed in patients taking trazodone. Skin rash, itching, edema, and, rarely, hemolytic anemia, methemoglobinemia, liver enzyme alterations, obstructive jaundice, leukocytoclastic vasculitis, purpuric maculopapular eruptions, photosensitivity and fever. Aching joints and muscles, peculiar taste, hypersalivation, chest pain, hematuria, red, tired and itchy eyes. Decrease and, more rarely, increase in libido, weight gain and loss, and rarely, menstrual irregularities, retrograde ejaculation and inhibition of ejaculation. Rare cases of idiosyncratic hepatotoxicity have been observed, possibly due to the formation of reactive metabolites. Nausea, vomiting, diarrhea, gastrointestinal discomfort, anorexia, increased appetite. Orthostatic hypotension, hypertension, tachycardia, palpitations, shortness of breath, apnea, syncope, arrhythmias, prolonged P-R interval, atrial fibrillation, bradycardia, ventricular ectopic activity (including ventricular tachycardia), myocardial infarction and cardiac arrest. Dry mouth, blurred vision, priapism, diplopia, miosis, nasal congestion, constipation, sweating, urinary retention, increased urinary frequency and incontinence. Drowsiness, fatigue, lethargy, psychomotor retardation, lightheadedness, dizziness, difficulty in concentration, confusion, sex drive increases.

OH, it gets better...

Tremor, headache, ataxia, akathisia, muscle stiffness, slurred speech, slowed speech, vertigo, tinnitus, tingling of extremities, paresthesia, weakness, complex partial seizures, and, rarely impaired speech, muscle twitching, numbness, dystonia and involuntary movements. Death by deliberate or accidental overdosage has been reported. There is no specific antidote for Trazodone.

---

thoughts...

We plan to contact the insurance company to discuss seeing a specialist which may actually cost them less than the current path. We have one lined up. Also, a discussion with the current assigned Dr. regarding why we are diagnosed Psychosis NOS when we have identified Drop Attacts, Seizures, Declining IQ that these neuroleptics are likely to further worsen the condition. And why Lamotrigine was not tested first when it is indicated for all the symptoms. Patient was visited today by sw/gwh at 7PM and was clearly in an Abilify-like state.
Patient experiencing emotion, but poor energy, poor social interaction, heavily druged. We suspect a new drug was introduced in the past 24 hours or began to take effect. Patient was responding much better the previous day via phone conversation and more in touch with feelings.

--gjh

Patient Update April 22, 2007

Patient spent 4 days in hospital as a result of calling police to the home for poisoning. Police realized this was 5th time visiting residence for psychosis. We had asked Patient to return to neurologist for checkup EEG and possible alternative meds for seizure. Patient was failing to make appointment. At this point I am livid. Here's why...

Dr. (original neurologist) had nothing to go on - although aware of seizures, no diagnosis. Had another EEG taken.

The Patient was delivered psych hospital last night at 11:00PM involuntary status.

The egotistical Dr. calls into question our desire to be involved with monitoring the quality of the Patient's care and does not comment on the faxed study or questions about prescribing Lamotrigine - ignored.

It now appears that a social worker at the hospital and a dr. at the psych hospital were involved in the transfer. Damaging meds are prescribed that took the patient three months to recover from. The family has provided the psych hospital system this warning - to HALT RISPERDAL IMMEDIATELY. They claim to have not seen the fax the next day. Three days later during a visit a member of the family sees the fax in a binder a RN is flipping through. Hmmm.

RN calls SW and says following this evening:

*Patient signed info release on paper to allow family status info.

*Patient is prescribed the following meds:

*Ativan (like Valium) anti-anxiety

*Tegretol (carbamazepine) Tegretol is an antiepileptic drug. Types of seizures treated with Tegretol include: grand mal, focal, psychomotor and mixed (seizures that include complex partial or grand mal seizures). Absence seizures (petit mal) do not respond to Tegretol.

*unknown antibiotic

*Risperdal at bed time! - caused Patients tardive and syptoms which included:
hallucinations audio and visual
had no dynamic conversation
had severe dizziness
had poor balance
had severely slowed motor movement
had severe tardive symptoms, eyes felt clamped shut, arms protruding in front of body
had no personality
had inability to discern emotion and social cues
had trouble making sentences
never started conversation
had inability to keep her eyes open
had nausea
and considering patients taking Risperdal are 50% risk for Diabetes - the family is demanding immediate halt of Risperdal. If the goal is to heal Patient, it must be stopped.

AND Patient presently being held involuntarily. Now ask yourself what happens to "second opinion"

-edited Friday 27th with updates
--gjh