Where's the line, What is/isn't worth it

[Zara-Newman]

1. I remember when I first started getting seizures when I was 15 and I was getting the myoclonic jerks everyday and a full tonic clonic seizure every other day, unless I was tired or stressed and then I would have more than one a day.

2. Now I am on meds my full tonic clonic seizures are less painful and I get them once or twice a week, and the myoclonic jerks in some form every day, but only badly around each 2-3 days.

3. I am very susceptible to side effects, I always have a headache and they have softened my bones, so I have broken a few - one was very bad and I needed surgery and was wheelchair bound for a long time. As well as that I occasionally get upset far too easily and worry about things.
I get quite bad stomach pains a lot and confused along with memory loss (not just during seizures)

4. I am very worried about my bones, hopefully my supplements have helped. They have broken so badly so easily I find myself not doing things I want to do, like skating just in case.

5. It is a touchy subject but recently my family have been looking into cannabis therapy with charlottes Webb. The diet made me quite ill.

6. I have an occasional drink, but it never seems to make a difference, I also have a coffee in the morning.
I don't think it would be hard to stop.

7. My family support me, but I also look after my mother - so I don't want to risk getting worse trying to get better.


Don't know if that is what you are looking for, I am awful with side effects - which sucks since tablets don't do much for me

Sent from my SM-G920F using Tapatalk

 

[AlohaBird]

I agree about the self-reliance thing. I've had to become much more proactive as a Mom -- both in working with his docs as well as keeping on top of the research.

Which reminded me that I forgot to mention the Mozart effect -- we'd already woven classical music into the daily routine, but was excited to read research into how 2 of Mozart's sonatas have a marked effect on reducing epileptic spikes in EEGs and in reducing seizures. It's incredibly easy to work music into the day -- nothing to give up really.

Some people go from losing unquestioning reliance on a white coated MD to transferring that reliance, equally unquestioningly, to whatever alternative practitioner or purveyor of snake oil wanders by.
Then there are those like you and me Karen, who become self reliant.

I love Mozart, always have but never realized that it could have anythign to do with my brain waves until reading about it here.

There is a neurologist who is a musician in his spare time named Dr Jeffrey Thompson who has a whole series of CDs based on the Mozart effect. (they have them on Amazon). He has some that are for Alpha wave focus which might help people more who have daytime seizures. I use his Delta Wave Sleep series since mine are nocturnal. BTW, Dr. Thompson is not making any claims about seizures, but he can show the effects on brain waves.

 

[AlohaBird]

I am very worried about my bones, hopefully my supplements have helped. They have broken so badly so easily I find myself not doing things I want to do, like skating just in case.

It is a touchy subject but recently my family have been looking into cannabis therapy with charlottes Webb. The diet made me quite ill.

I have an occasional drink, but it never seems to make a difference, I also have a coffee in the morning.
I don't think it would be hard to stop.

Don't know if that is what you are looking for, I am awful with side effects - which sucks since tablets don't do much for me.

This is exactly what I am looking for. In your cost/benefit analysis, the side effects of the meds are bad and the meds aren't doing that much good so you are still open to trying other alternatives. You have tried a few that didn't make a difference but you haven't given up hope.

I'm working on a gardening project with a strain very similar to Charlotte's Web. Waiting on my first crop.

I had a horrible problem with bone density (or lack of it) after chemotherapy. The thing that got my bones back to full strength was not a supplement pill, it was bone broth. It's easy to make, njust take some bones, put them in a big pot, cover with water and just a splash of vinegar, then simmer them til they surrender.

 

[Blonde Angel]

Hi Zara.
You made a great point about the bone density stuff. Yes, there's some meds that really attacks the calcium. You reminded me to relook at my girls Trileptal and guess what... Under the leaflet that comes with the med sectioned " things to be careful of" reports that " there's been reports of bone disorders including osteopenia aand osteoporosis in long term Tx with Trileptal
It's serious stuff to consider.
Also....

Make sure you've got some supports in you caring for your mum and you also need the support, coz you don't have it easy too.

 

[KarenB]

Charlotte's Web....I know a lot of parents think this may be the great cure...we're giving it a pass for now. One reason is that Jon has had paradoxical reactions to numerous meds (like the benzos revving him up rather than calming), so don't want to trigger any more psychotic episodes. Also, want to wait for some more hard scientific evidence, and see how it works for other kids (on a larger scale, rather than just anecdotal)

 

[Andrew]

1) My seizures would become life threatening if untreated.

2) Apart from an absent 'type' seizure all my other types of seizures - many different types including Status Epilepticus - are controlled with B vitamins and have been for many years. When I was five months old, after an unsuccessful trail of all known Anti-epileptic Drugs, my paediatrician administered vitamin B6 (Pyridoxine), as a mono therapy. This controlled my Infantile Spasms, Febrile Convulsions...etc. Pyridoxine had to be increased as I grew and also during any fever.

3) My meds are B vitamins and the only possible long term side effect is Peripheral Neuropathy (nerve damage) regarding Pyridoxine but it's low risk in my case.

4) There is a slight risk of Peripheral Neuropathy using a mega dose of vitamin B6 (Pyridoxine), on a daily bases, over long periods of time, I think about it but it isn't bothering me yet.

5) I receive Pyridoxine through my G.P., on prescription, so although I don't use the conventional treatments for epilepsy I still collect my tablets from the pharmacist. My multi B Complex tablet I get from a health food shop. It stopped a visual aura (seeing colours) which I was experiencing almost every morning. So I have every faith with this as I have been using Pyridoxine (the 'synthetic' type of vitamin B6) for over 44 years and a multi B complex tablet since 1990 (25 years).

6) I've had epilepsy all my life so not much has changed. I don't drive because of my absence seizures. I don't drink coffee and rarely drink tea so I'm not sure what effect a high level of caffeine would have on 'my' epileptic seizures. I have never smoked. MSG, Artificial sweeteners and Gluten to my knowledge have never bothered me. I do have a beer but I am not addicted. Never done drugs... Well! apart from an unsuccessful trial of Anti-epileptic Drugs a neurologist gave me when I was 15 - it turned out to be a therapeutic trial and the side effects knocked me for six.

7) I have a support network of family and friends. I have a G.P. who understands when it comes to my extremely rare condition known as 'PNPO Deficiency' (proven via a genetic test) - the initial cause of my photosensitive, vitamin B6 dependent, epileptic seizures and possibly my Dyslexia and Asperger's Syndrome. I am the only person in my family/known family history with epilepsy. To my knowledge I have never had my vitamin levels tested.

http://cdn.intechopen.com/pdfs-wm/35742.pdf

http://www.ncbi.nlm.nih.gov/pubmed/7915028

http://www.ncbi.nlm.nih.gov/pubmed/12200739

http://carolinecollard.hubpages.com/hub/Nutritional-Treatments-of-Autism---B6-and-Magnesium

http://www.ariconference.com/ari/newsletter/203/page5.pdf

http://www.autismwebsite.com/arri/v162/page2.pdf

'Vitamin B6 Dependency' is not the same as 'Vitamin B6 Deficiency'.

Seizures which are controlled with 'vitamins only' are EXTREMELY RARE.

**DO NOT ALTER ANY MEDICATION WITHOUT YOUR DOCTOR'S CONSENT**

 

[AlohaBird]

Hi Andrew,
So you had the neonatal epileptic encephalopathy they are talking about in the first link?
The second link is fascinating about the connection between glutamate and your particular type of seizures. Have you ever looked into the GARD protocol of Dr. John Symes (He's also a CWE member who goes by dogtorj) The G in GARD is glutamate.
That is also interesting about the synergistic interaction of B6 and magnesium. Those studies focused on autism, ADHD and PDD but several people here on CWE have also found Mg. to be of value in seizure control.

While I realize that yours is a specific condition, as you point out B6 dependency is not the same as B6 deficiency, I think it is possible to draw inferences from this information that could apply more widely to other people with neurological disorders. The main inference I would draw is that nutrients matter.

Thank you for sharing this info, Andrew.

 

[AlohaBird]

You made a great point about the bone density stuff. Yes, there's some meds that really attacks the calcium. You reminded me to relook at my girls Trileptal and guess what... Under the leaflet that comes with the med sectioned " things to be careful of" reports that " there's been reports of bone disorders including osteopenia aand osteoporosis in long term Tx with Trileptal
It's serious stuff to consider.

It is indeed. I went from osteopenia to "normal" in one year with a cup of homemade bone broth daily, no calcium supplements at all.

Charlotte's Web....I know a lot of parents think this may be the great cure...we're giving it a pass for now. One reason is that Jon has had paradoxical reactions to numerous meds (like the benzos revving him up rather than calming), so don't want to trigger any more psychotic episodes. Also, want to wait for some more hard scientific evidence, and see how it works for other kids (on a larger scale, rather than just anecdotal)

That's interesting how he has opposite reactions and that definitely merits caution. In my case I'm not looking to medical MJ to cure anything but if it could be a gentle sleep aid that would be great.

The cover of last month's National Geographic was all about weed from the scientific POV. It was not taking sides saying it is a miracle cure or that it causes "reefer madness". NatGeo was just saying that there is no way we can get any hard data one way or the other with the federal laws still making possessing it, even for study, a Schedule 1 drug felony right up there with heroin. Hopefully a publication with the stature of NatGeo can have some influence in Washington. These laws just make no sense.

 

[Blonde Angel]

AB
I put my girl on coral calcium( comes as capsules or powdered) she has lactose free cheeses.

 

[Andrew]

So you had the neonatal epileptic encephalopathy they are talking about in the first link?

I was lucky. My Paediatrician found B6 EARLY (the earlier the better regarding B6 Dependent Seizures) before neonatal epileptic encephalopathy took hold. If B6 had not been given... then who knows. I certainly would not have been capable of solving a 'V-cube 7' (7*7*7 version of the 3*3*3 Rubik's Cube) or achieving qualifications in both 2D and 3D Computer Aided Design (CAD). Amongst other interests, I enjoy researching my own interesting and rare, naturally controlled condition.

Have you ever looked into the GARD protocol of Dr. John Symes (He's also a CWE member who goes by dogtorj) The G in GARD is glutamate.

The 'A' in GARD represents 'Aspartate'. The PLP dependent enzyme "Aspartate transaminase catalyzes the interconversion of aspartate and α-ketoglutarate to Oxaloacetate and glutamate."(1) The 'G' in GARD is, as you say, Glutamate. "Glutamate decarboxylase or glutamic acid decarboxylase (GAD) is an enzyme that catalyzes the decarboxylation of glutamate to GABA and CO2. GAD uses PLP as a cofactor."(2)

(1) Quote taken from https://en.wikipedia.org/wiki/Aspartate_transaminase

(2) Quote taken from https://en.wikipedia.org/wiki/Glutamate_decarboxylase

Also see:

http://enzyme.expasy.org/EC/2.6.1.1

http://enzyme.expasy.org/EC/4.1.1.15

Those studies focused on autism, ADHD and PDD but several people here on CWE have also found Mg. to be of value in seizure control.

Asperger's Syndrome, ADHD, autism, High functioning autism, PDD are all part of a spectrum. I've tried Mg and I felt very nervous so I discontinued using it.

I eat a small portion of oily fish (omega 3) almost daily and use zinc (Zn) in tablet form, daily (a cofactor for the 'Pyridoxine Kinase' enzyme).

http://www.uniprot.org/uniprot/O00764

I have been informed by the team of geneticists (at the time of my diagnosis of PNPO Deficiency) that I am the oldest of 35 known case in the world scientific literature.

I feel privileged that my parents and I have contributed towards the continuing genetic research of B6 Dependent Epilepsy.

 

[AlohaBird]

I was lucky. My Paediatrician found B6 EARLY (the earlier the better regarding B6 Dependent Seizures) before neonatal epileptic encephalopathy took hold.

Lucky indeed. Somebody was on the ball there.

The 'A' in GARD represents 'Aspartate'. The PLP dependent enzyme "Aspartate transaminase catalyzes the interconversion of aspartate and α-ketoglutarate to Oxaloacetate and glutamate."(1) The 'G' in GARD is, as you say, Glutamate. "Glutamate decarboxylase or glutamic acid decarboxylase (GAD) is an enzyme that catalyzes the decarboxylation of glutamate to GABA and CO2. GAD uses PLP as a cofactor."(2)
(1) Quote taken from https://en.wikipedia.org/wiki/Aspartate_transaminase
(2) Quote taken from https://en.wikipedia.org/wiki/Glutamate_decarboxylase
Also see:
http://enzyme.expasy.org/EC/2.6.1.1
http://enzyme.expasy.org/EC/4.1.1.15

You obviously understand a lot more about enzyme function than most folks. Thanks for those links. Dr. Symes is positing that the modern diet puts that normal enzyme function out of balance. Yes there always is and should be some aspartate and some glutamate in the process. This is why the "flavor enhancers" such as MSG and aspartame are so good at what they do. There are receptors there for them. Dr. Symes refers to them as dietary crack cocaine, artificial overstimulation of an existing receptor. Also he is positing that the whole process, given a diet heavy in gluten and other glutamate containing foods, is out of balance in favor of excess stimulation of the glutamate receptors.

Asperger's Syndrome, ADHD, autism, High functioning autism, PDD are all part of a spectrum. I've tried Mg and I felt very nervous so I discontinued using it.

I eat a small portion of oily fish (omega 3) almost daily and use zinc (Zn) in tablet form, daily (a cofactor for the 'Pyridoxine Kinase' enzyme).

http://www.uniprot.org/uniprot/O00764

I have been informed by the team of geneticists (at the time of my diagnosis of PNPO Deficiency) that I am the oldest of 35 known case in the world scientific literature.

I feel privileged that my parents and I have contributed towards the continuing genetic research of B6 Dependent Epilepsy.

Any supplementation is an individual YMMV. If Mg doesn't agree with you, that's good that you listen to your body.
I agree with you on the importance of omega 3s. Days that I don't happen to have fish, I use a krill oil supplement.


I think your case is very interesting. Thank you so much for sharing your experiences with us.

 

[AlohaBird]

Well, I met my new neurologist today and he basically gave me the "what is/isn't worth it?" questionnaire as we decided on the course of treatment we will be pursuing. He raised questions like "is it worth it to rock the boat", "which is more important in your mind, control of the seizures today or side effects down the road?" "Would I be willing to 'stick it out' if tapering of a med and onto another took a while?"

The side effect he was most concerned about for a woman my age on phenobarbitol and Valproic Acid is the very real danger of osteoporosis. He is ordering another DEXA scan to see how my bones are doing. He is more concerned about the pheno than the VpA long term.

And I do have to give credit where credit is due. I have done my share of whinging about incompetent arrogant jerks for neuros but I think this one is pretty competent and actually nice guy. He is not a Kaiser employee but he consults with them 2 days a week. His primary practice is Queens Hospital which is one of the premiere institutions in this part of the world. They are the ones that have the facilities and the trained personnel for sleep study VEEGs. But Kaiser will pay for it if he refers me over. Cool.

Before we start playing with meds though, he wants a new MRI done. He says the technology has improved greatly since the last time I had one a couple of decades ago. His is an interesting point I think for a lot of us to consider, those of us who were diagnosed a while back. What has changed since then, improved imaging, more Rx options, VEEGs. I think a lot of us could benefit from a check in and review of current treatment and future options.

I don't mind rocking the boat. I know how to swim

 

[KarenB]

What an amazing doc to be asking questions like that. I think most neurologists are content if the seizures are well controlled, and give little thought to long-term side effects.

Good idea about a new MRI. Interestingly enough, Jon had an MRI done a few weeks after starting the Keto diet, and then another one done about 1 1/2 years later. His neurologist showed me the two, side by side. Almost all the lesions in the white matter of his brain had either disappeared, or had shrink down by 75% or more.

 

[AlohaBird]

What an amazing doc to be asking questions like that. I think most neurologists are content if the seizures are well controlled, and give little thought to long-term side effects.

What I appreciated too was that he took MY answers as the ones that mattered. When I told him long term side effects concern me more at this point in my life than perfect seizure control, he accepted that.
I definitely brought up the whole side effects discussion. But this is the first neuro I've ever met to give no-nonsense answers about side effects and not just brush questions off with something like, "Well, that's not really anything to worry about".
The patient should be the one deciding if something is worth worrying about.

Good idea about a new MRI. Interestingly enough, Jon had an MRI done a few weeks after starting the Keto diet, and then another one done about 1 1/2 years later. His neurologist showed me the two, side by side. Almost all the lesions in the white matter of his brain had either disappeared, or had shrink down by 75% or more.

That is fascinating. Had the lesions ever been determined to be cancerous or any other particular cause assigned to them?

 

[KarenB]

White matter lesions (which show up as bright spots on the MRI) are hardly ever cancer. They can be caused by injury, infection, inflammation, chemical exposure, auto-immune response, strokes, etc. They're observed in patients with Alzheimers and Multiple Sclerosis. Children with Down Syndrome display abnormality in the temporal lobe white matter (and adults w/ DS usually develop early Alzheimers). A fairly high percentage of children with Autism also have white matter lesions. As do people with Vitamin B6 and/or B12 deficiency.

They're definitely associated with seizures, as well as memory loss, migraines, mood changes, cognitive loss, etc. But some people can have white matter lesions show up on an MRI with no symptoms.

Some of the inflammation observed on the first MRI close to his sinuses and ears was due to the sinus/ear infection Jon had at the time, which had migrated to his brain (and caused status epilepticus). The heavy duty IV antibiotics probably cleared up that infection/inflammation. However, he also had large lesions elsewhere which had either disappeared or significantly shrunk after 1 1/2 years on the Ketogenic diet

 

[MichaelJO7]

Interestingly enough, Jon had an MRI done a few weeks after starting the Keto diet, and then another one done about 1 1/2 years later. His neurologist showed me the two, side by side. Almost all the lesions in the white matter of his brain had either disappeared, or had shrink down by 75% or more.

Karen B,

This is precisely the kind of biological improvement many of us are hoping for.

I met a young woman (L, who was 24) earilier this year who had a big scare. She had her first "episode" in public where she could not control her limbs, and seized, and was confused. I don't remember the details exactly. What I do remember is that we got to talking. (I had told her I had muscular dystrophy because I was in a wheel chair and could not control my arms very well to wheel myself around at the time.) She shared her story with me. She had been taken to the hospital, and it was discovered that she had abnormal white matter in her brain through an MRI. She was diagnosed with MS. This was a big blow for her.

They promptly began putting her on medications for MS. We discussed her abnormal white matter. I have not seen her since, but wanted to follow up because gluten sensitivity can have the same consequences in the brain. It can mimic MS very well. I wanted to recommend fish oil, almond milk, and other biologically available fats to help prevent demyelination and promote proper nerve conduction. (It is the scrambling of the electrical signals that run through the nerves that causes loss of muscle control and coordination. Myelination helps to promote speed of signal conduction as well as strength of signal conduction by providing insulation along axonal pathways.)

I am also wondering if it was your objective to address Jon's white matter lesions through the keto diet, or if it was a pleasant, somewhat unexpected consequence of the keto diet that it would help heal the white matter lesions.

This is of considerable interest to me.

I had an MRI done over two years ago, which appeared to be normal, but can no longer tolerate the MRI. Magnets cause powerful contractions in my muscles, and my heart can't handle this anymore.

It would seem to me that Jon's "remyelination" could be a necessary precursor to neurogenesis and future cognitive improvement.

 

[KarenB]

Yes! I forgot to mention Celiac Disease (and perhaps other forms of gluten intolerance) that caused white matter abnormalities in the brain. Several of his neurologists have cautioned us that if Jon ever goes off the Keto diet (which cuts out all grains), he should continue to avoid gluten.

We went on the Keto diet to stop the seizures, as the meds weren't working. But we didn't know what was causing the seizures. At the time he started the diet, we weren't aware of the white matter abnormalities -- that first MRI was done about 1 month after he started the diet.

So, clearly the ketogenic diet cured one problem area in his brain, which may have been causing some seizures (shortly after that first MRI was done, he became seizure free and remained so for 1 year). However, at the time of his 2nd MRI, he had had a relapse of seizures, so there must be something else causing seizures -- at that point he also had a bad flare-up of inflammatory bowel disease, so the key to curing the seizure relapse was curing the gut. Since then, we've learned to be aggressive when he starts having diarrhea. He went for 2 1/2 years without seizures, but recently had one due to secondary encephalitis (following an illness). Of course, encephalitis can cause seizures in people who don't have epilepsy, so we're very much hoping it was just a solitary blip.

 

[Blonde Angel]

MRI scans x 2 notes a small bilateral choroid fissure cyst present and T2 and FLAIR signal abnormality seen in the per ventricular White matter. Every thing elsewhere normal.

When I've read up on these medical terms, it does suggest an inflammatory process evident.... I'm not surprised really...
I always like to request a copy of any results be it MRI, lab stuff .. Interesting that one has to always ask not just receive these results ...

 

[AlohaBird]

Well my new neuro came through with an appointment for this coming Monday. I'm going to get the DEXA and MRI scans done in the morning and then check in for the VEEG.

This should be interesting if not exactly fun.

 

[AlohaBird]

Got the results of the DEXA bone density scan while I'm here having the VEEG. It seems that my osteopenia is back. They categorized me as osteopenic and "at risk" for osteoporosis. *&^%$#@!

So, this is something that needs to get factored into my treatment decision making. Good to know even if it is not something I wanted to hear. I appreciate my new neurologist wanting to run this test.

I need to fire up the slow cooker and start making some more bone broth. I think I have let that part of my diet slide in the last year since I have been in Hawaii just because the weather is warm and a hot slow cooker in the middle of the open plan living/kitchen area is a heat source I don't need. I guess I could plug it in outside on the porch. That would work.