New Kid on the block!

[Andrew]

Hi All,

My name is Andrew and I am 37yrs old. I have a very rare type of epilepsy known as Pyridoxine Dependant Epiepsy. I had my first seizure at two weeks old. I was in mum’s arms at home and the seizure was in the form of a slight tremble. I was about 3 weeks old when I had my next seizure. After this I was having many ‘different types’ of seizures a day. Phenobarbital was administered, which turned out to be ineffective. At about 5 weeks old I was admitted to hospital. I spent the first five to six months of my life in and out of hospital. Doctors were mystified by my illness. None of the ‘normal’ antiepileptic drugs that were administered had any positive effects. When I had a severe seizure in hospital doctors administered Paraldehyde to bring me out of the seizure and keep me sedated. Countless tests were done including, EEGs, lumber punctures… etc. A top pediatrician from the main city hospital told my mother that he was going to a meeting. He said he would talk about me in the hope that someone there would be able to help us. At this meeting there was a professor who was doing research into childhood epilepsy. He suggested a trial of Pyridoxine HCL (vitamin B6). All antiepileptic drugs were withdrawn and the Pyridoxine HCL was administered (I was five months old). Within two to three days my mother noticed a big difference in me. I’d stopped having severe seizures. I’ve been taking Pyridoxine HCL ever since.

When I was 15 years old I underwent a very unsuccessful two year therapeutic trial of AEDs. At 19 years of age I discovered a multi B complex tablet. I had searched for one that contained at least 50mg of Pyridoxine HCL (same as what is in one of the B6 tablets that I am prescribed). The idea was to replace one of these. Since I have been taking this Multi B complex I rarely experience my aura. :tup:

The only seizures I have now are absent type seizures.

I also eat plenty of oily fish (Omega 3) and I have recently added a Magnisium tablet to my daily intake of B vitamins.

I do not use any AEDs to control my seizures.

Thank you for your time,

Andrew

 

[speber]

Welcome!

Hello Andrew, welcome to the group!
That's some good information! You'll find this group of people tends to be REALLY into good info...

I also eat plenty of oily fish (Omega 3) and I have recently added a Magnisium tablet to my daily intake of B vitamins.

...I take it now too.
You may have found it already, but here's a nice thread on that Mg!

http://www.coping-with-epilepsy.com/forums/f22/magnesium-1300/

:rock:

 

[RobinN]

Well there you go... I went rushing to look at my daughters B Complex ingredients and right there it says Vitamin B6 as pyridoxine HCI and pyridoxal 5 phosphate --71mg

Very interesting story Andrew. Welcome, and a very good reason to leave no stone unturned. Please feel free to take up my time any day, as this is the reason that I keep searching for answers for my daughter who is 15.

Thanks for sharing.

 

[POSITIVEPERSON]

Hi Andrew welcome to the board and nice meeting you.

I have abensce and grand mal szs I take homeopathy for it ,since I ran out of meds and
its so much easier than than AEDS. I am more alert, aware , have better balance, spelling, memory. I am healthier!!!!!

Your very lucky to be able to just take complex b.

Have you thought of homeopathy for the absence seizures? It might be something to think about it.

Riva

 

[RobinN]

There is also evidence that B6 and magnesium may reduce seizure activity. Parent reports also include: improvements in attention, learning, speech/language, and eye contact. Information about these research studies along with other relevant information can be obtained from the Autism Research Institute
---
It is very important to give magnesium along with B6 because B6 requires extra magnesium to be effective, and thus may cause a deficiency. Problems associated with magnesium deficiency include: enuresis (bedwetting), irritability/agitation, and sound sensitivity. Occasionally, an autistic person exhibits one or more of these behaviors when given B6 along with magnesium. In these cases, the person may need more than the recommended amount of magnesium. Magnesium is relatively safe--too high of a dose will cause diarrhea (e.g., Milk of Magnesia).

http://www.autism.org/vitaminb6.html

Several different nutrients (and two hormones) may also be beneficial in selected patients with epilepsy. The fact that nutritional factors are involved in the regulation of electrical activity in the brain is indicated by the fact that severe deficiency of thiamine, magnesium, or vitamin B6 can cause seizures. A subnormal concentration of each of these nutrients has been found to be common in patients with epilepsy. While the severity of these deficiencies is probably not great enough in most cases to cause seizures in otherwise healthy people, marginal status with respect to any of these nutrients could conceivably exacerbate a seizure disorder due to another cause.

In addition, some patients with epilepsy might have a higher-than-normal requirement for one or more nutrients that play a role in brain electrical activity. That phenomenon has been clearly demonstrated in the case of vitamin B6-dependent epilepsy, a condition in which intractable seizures can be completely controlled by administration of large doses of vitamin B6. The existence of this relatively rare syndrome raises the possibility that more subtle forms of nutrient dependency occur more commonly. While mildly or moderately increased requirements for vitamin B6 or other nutrients may not by themselves be sufficient to cause seizures, a failure to meet these increased requirements could aggravate an existing seizure disorder.

http://findarticles.com/p/articles/mi_m0FDN/is_1_12/ai_n19170695

 

[Bernard]

Hi Andrew, welcome to the forum. :hello:

Thanks for sharing your story. It's amazing how varied the epilepsy experience can be.

 

[spinnymommy]

Hello Andrew and welcome

I really appreciate the information you have shared and look forward to your continued presence here.

I've been taking a large dose of Vitamin B6 for over a year now. My neuro told me to take it to help control my rage outbursts. I have since read that some partial seizures can manifest themselves that way. - sudden extreme anger or fear for no reason, occuring then going away by itself and not lasting long at all. I don't know if the rage was caused by seizures or my brain injury, but the B6 worked.

 

[RobinN]

May I ask what you consider to be a large dose?

 

[Andrew]

Please see the following URL for more information about Vitamin B6 Dependent Seizures:

http://faculty.washington.edu/sgospe/pyridoxine/Webpages/pubs.html

 

[RobinN]

...

Yes I know this is old, but I found it interesting

We examined cerebrospinal fluid (CSF) levels of glutamate, gamma-aminobutyric acid, and pyridoxal-5'-phosphate in a patient with pyridoxine dependency while on and off vitamin B6 treatment. RESULTS. Off vitamin B6 the glutamate level was two hundred times normal. An intermediate dose of vitamin B6 (5 mg/kg BW/day) caused normalization of the EEG and remission of the seizures, but the CSF glutamate concentration was still ten times normal. With a higher dose of pyridoxine (10 mg/kg BW/day) the CSF glutamic acid normalized. CONCLUSIONS. The results indicate that control of epilepsy might not suffice as the therapeutic aim in treating of pyridoxine dependency. In view of the evidence for the role of excitatory amino acids in destruction of CNS nerve cells, the optimal treatment must counteract the raised levels of CSF glutamate and the dosage of vitamin B6 must be adjusted accordingly. The development of mental retardation might theoretically be prevented by adjusting the dose of vitamin B6 to achieve not only remission of epilepsy but also normalization of CSF glutamate.

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&db=PubMed&list_uids=7915028&dopt=AbstractPlus

So according to this abstract, they are saying for a 50 kg person, an intermediate dose would be around 2500 mg, and for a higher dose it would be around 5000 mg.
Am I figuring this out correctly? ...guessing a low dose would be around 1000 mg

 

[TeeTees]

Hi Andrew,

Welcome aboard. Thanks for sharing your experiences, and treatments in-depth. I'll certainly by having a look for B6 in nutrition stores, hopefully Tomorrow if I'm not too drowsy.

 

[Bernard]

So according to this abstract, they are saying for a 50 kg person, an intermediate dose would be around 2500 mg, and for a higher dose it would be around 5000 mg.
Am I figuring this out correctly? ...guessing a low dose would be around 1000 mg

No. You have an extra zero in there. It's 5 mg/kg, so 50 kg = 250 mg/day according to the abstract.

 

[Andrew]

Pde

Please consult your Doctor first. Vitamins can intrefere with some AEDs.

http://www.epilepsy.org.uk/news/archive/20011127.html

 

[RobinN]

Thanks Bernard - I see where I was confused now.

Appreciate that reminder Andrew.

 

[RobinN]

This jumped out at me when I was reading an article. I post it here only because we are discussing the importance of B-Vitamins.

"Molecular pathways involved in hormone action have been the target of a multi-billion dollar pharmaceutical research effort. However, many of these pathways may normally be under dietary regulation."

Choline - organic compound, classified as an essential nutrient[1][2][3] and usually grouped within the Vitamin B complex. This natural amine is found in the lipids that make up cell membranes and in the neurotransmitter acetylcholine. Adequate intakes (AI) for this micronutrient of between 425 to 550 milligrams daily, for adults, have been established by the Food and Nutrition Board of the Institute of Medicine of the National Academy of Sciences.

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

-- Women need more choline (a nutrient that is needed for cell membrane formation and to make the neurotransmitter acetylcholine necessary for brain function) after menopause or are at risk of liver and muscle damage.

http://www.ultrametabolism.com/blog/2007/10/the_overwhelming_evidence_of_t.html

I wonder why it is needed only after menopause. What about if your body has inborn errors of metabolism?
http://www.springerlink.com/content/y357258681167734/

 

[Andrew]

The importance of B-Vitamins FOR ME:

WITHOUT my B vitamins I would either be in a permanent status epilepticus condition, mentally challenged or worse - I probably would not have seen my first birthday. This is not only based on what I have read, it is also backed up by what I experienced when younger (status epilepticus more than once and many other different types of seizures).

What a difference B vitamins have made to MY life!!! Please read on:

WITH my B vitamins I go swimming twice a week with my father and each time I swim just over 1 mile (1.609km) without stopping. I have read books on the Divine Proportion (Golden Ratio), infinity, the mathematical constant Pi, 2 & 3 dimensional Computer Aided Design (CAD), superstrings, multidimensional space-time, fractals, geometry, engineering, polytopes... etc. I have gained my 4351-01 and 4351-03 city & guilds qualifications in both 2D and 3D Computer Aided Design and gained high exam results. I have since used the 3D solid modeling tools in AutoCAD to draw a jet engine, microscope, credit card sized calculator, computer hard drive... etc. and rendered them complete with reflections and shadows. I have built a computer. I can solve the Rubik’s cube. I have discovered mathematical equations myself then bought books on the subjects and seen the same equation in the books. I have spotted mistakes in ‘A’ level math’s books, I can use a micrometer and Vernier caliper, I know the names of polygons which have from one to one thousand sides, I have emailed a professor in medicine who I have donated a blood and urine sample to, for genetic research. I have also emailed a professor of Cosmology and I have received some interesting replies from both. Another one of my questions, and their reply, has been put on a particle accelerator website, Fremilab, in America, for all to read:

http*//www.fnal.gov/pub/inquiring/qu...blueberry.html ...

Thanks to B vitamins (Mainly), Omega 3 & Magnesium I have achieved quite a lot.

It is very important that Pyridoxine Dependent/Responsive seizures are known about, the treatment is simple – B vitamins of which vitamin B6 is the most important for MYSELF. After taking Pyridoxine HCL for over 36 years, I have experienced no signs of neuropathy (nerve damage). I have been lead to believe by the professionals that I am one of the oldest people in the world with this very rare type of Pyridoxine Dependent Epilepsy.

INPORTANT NOTE: The B vitamins are not a cure for all types of epilepsy/seizures and they may interfere with your medication.

http*//www.epilepsy.org.uk/about/pos...folicacid.html

Pyridoxine Dependent/Responsive Seizures are very rare and usualy start within the first two years of life. I have been told that this type of epilepsy is due to a genetic fault.

Andrew

 

[Bernard]

Andrew, your links are not working.

 

[brain]

INPORTANT NOTE: The B vitamins are not a cure for all types of epilepsy/seizures and they may interfere with your medication.

http://www.epilepsy.org.uk/about/pos...folicacid.html

Pyridoxine Dependent/Responsive Seizures are very rare and usualy start within the first two years of life. I have been told that this type of epilepsy is due to a genetic fault.

Andrew

Andrew ~

Here's some information

Pyridoxine Dependant Epilepsy

Pyridoxine-dependent epilepsy is a syndrome that usually presents with neonatal intractable seizures. It may present in later infancy or early childhood. The diagnosis should be made as early as possible because the seizures can be controlled and the subsequent severe encephalopathy may be prevented by pyridoxine(1).

It is recognized as one of the six pyridoxine-dependency syndromes; others being B6 responsive anemia, xanthurenic acidemia, cystathioninemia, homocystinuria and type 2 hyperprolenemia(10,11). Since the initial description of this disorder in 1954, fewer than 100 patients with pyridoxine-dependent seizures have been reported(4). So far pyridoxine dependent seizures have been reported in only 8 Indian children(12-16). This includes the 4 cases reported by Baxter(15). Although a regional variation in its incidence exists, pyridoxine-dependency has been said to be a rare cause of neonatal seizures. A birth incidence of one in 783,000 has been reported recently from the UK and the Republic of Ireland(15).

Treatment and Prognosis

Early treatment determines the prognosis. In the absence of early appropriate treatment, the prognosis is poor, all survivors being severely mentally retarded( 8 ). Untreated children with pyridoxine-dependent seizures usually die with a severe seizure disorder. In Haenggeli’s series of 39 children with pyridoxine-dependent seizures the mean age at death was 3.5 month(23). An initial response to a traditional antiepileptic therapy may occur for as long as 3 months. Therefore, an apparent initial response to standard anticonvulsant should not exclude the diag-nosis of pyridoxine -dependent epilepsy(1). Pyridoxine should be administered as a diagnostic test in all cases of convulsive disorders of infancy in which no other diagnosis is evident( 8 ). Use of low dose pyridoxine in multivitamin supplements could be a confounding factor for early diagnosis and appropriate management(21).

Once the diagnosis is confirmed, maintenance therapy should be continued indefinitely and doses increased with age or intercurrent illnesses( 8 ). The maintenance dose of B6 needed is still not clear. There is a relatively wide range for the daily B6 dose necessary to control the seizure i.e., 10-200 mg/day(24). In the literature doses as high as 680 mg initially and 200 mg/day subsequently have been reported(24). Good control of seizures has been reported with small dose of the vitamin also (0.05-0.16 mg/kg/day)(17,21). These reports suggest that there could be individual variation in the dose of the vitamin required to control the seizures, Baumeister, et al.(25) found the CSF level of glutamate in a 32-month old child with pyridoxine-dependent seizures to be 200-fold the normal level when the child was off pyridoxine. A dose of 5 mg/kg body weight per day vitamin B6 caused normalization of the EEG in this child and remission of the seizures, but the concentration of the glutamate in the CSF was still 10-fold the normal concentration. An increase of the dose of pyridoxine to 10 mg/kg per day normalized the CSF glutamate level and was associated with a normal developmental outcome. Thus the dose of B6 required to normalize the CSF glutamic acid is higher than the dose required to control seizure(25). Baxter, et al.(17) showed that children with pyridoxine depen-dent seizures who were treated with an increased dose of pyridoxine during the course of one year demonstrated an improvement in the motor/performance subscale on psychometric testing. There is some evidence suggesting that the doses of B6 required for preventing the more subtle manifestations of the encephalopathy related to pyridoxine dependency could be more than those required for seizure control(17-21). Severity of any metabolic disease depends on the level of altered enzyme activity. It may be that the degree of enzyme activity determines the age after birth when seizure will occur and that individuals with relatively high activity will present late in infancy as cases of atypical pyridoxine- dependent seizures(16). We hypothesize that the individual variation in the dose of pyridoxine required to control the seizures is related to the individual variation in the level of enzyme activity.

If B6 supplementation is interrupted, seizures recur within 2-23 days. There are several reports of cases with seizure free intervals of several months in the absence of pyridoxine supplementation( 8 ). The longest seizure free period reported after withdrawal of pyridoxine was 5 months(26).

I have a birth defect / genetic / etc, and I have
to take Vitamin B-9 type of Folic Acid.

 

[Andrew]

URLs

Hi Bernard,

Thanks for pointing that out to me, Here are the URLs to my post entitled "The importance of B-Vitamins FOR ME":

...one of my questions, and their reply, has been put on a particle accelerator website, Fremilab, in America, for all to read:

http://www.fnal.gov/pub/inquiring/questions/blueberry.html

INPORTANT NOTE: The B vitamins are not a cure for all types of epilepsy/seizures and they may interfere with your medication.

http://www.epilepsy.org.uk/news/archive/20011127.html

Pyridoxine Dependent/Responsive Seizures are very rare and usualy start within the first two years of life. I have been told that this type of epilepsy is due to a genetic fault.

I hope they work

Regards

Andrew

 

[Bernard]

Thanks Andrew. The new links work. :tup: