Trigeminal Neuralgia

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Re: Trigeminal Neuralgia

Postby Jaded » Tue Jan 27, 2015 9:52 am

I'm not logging it - was in too much pain to even think about that. But I will from today.

Taking a combo go krill and cod liver oil - krill in the am and CLO in the evening.

The natural calm and B12 patches arrived on Saturday but on Friday I was talking more mag citrate and B12 (sublingual) after you guys altered me to the problems here.

Yes you are rigt JL, I need to write it all down.
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Re: Trigeminal Neuralgia

Postby jimmylegs » Tue Jan 27, 2015 12:27 pm

ugh must have been terrible. glad to hear you are feeling good enough to do some tracking now!
can i ask about the decision making on the krill and clo?
i thought these links were interesting:
http://www.consumerreports.org/cro/2012 ... /index.htm
http://www.mercola.com/infographics/fis ... ll-oil.htm
not sure how smart it is to start wiping out the bottom of the aquatic food chain. i will have to start looking for sustainable fisheries certifications on oils the way i do for filets :S
also may i ask what the CLO contributes to your daily inputs of vits A, D and E?
hopefully the revisions keep helping :) once you're tracking maybe you could start running little mini tests of the various elements. like comparing sublingual b12 one week to patches the next, with everything else consistent. could be interesting! and keep a pile of salmon handy for emergencies ;)
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Trigeminal Neuralgia

Postby Jaded » Tue Jan 27, 2015 3:03 pm

Firstly huge apologies for the typos. I can spell, honestly. :)

Last summer I was increasing the dose on fish oils thinking it would help the spasticity in my knees. So then I discovered krill, thinking it was better absorbed. Spent loads buying it and took loads. And nothing changed except I started getting shaky and blood sugar was dropping. Then someone sent me a link to this:

http://chriskresser.com/when-it-comes-t ... not-better

So I stopped the krill and started taking CLO. Just one or two a day. So had some krill left over and just been finishing that, at a lower dose. Thanks for reminding me about that artilcle!!

I did have my omega 3:6 ratio checked late last year, and it was 1:1 - so not at the perfect level - not then and definitely not now.

I do have to get back to a balanced regime and remember what I learned last year.

I don't think stress helps much either - I'm a big stress-head. My cortisol levels are high and adrenals exhausted. Not ideal for an ms-er. I had 2 cold sores in the past 2 months and one preceded the recent worsening of the 'TN'. It's been a constant battle - I just want to be well for a week!!

J.
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Re: Trigeminal Neuralgia

Postby jimmylegs » Tue Jan 27, 2015 5:16 pm

nooooooo probs!
hmm i would've thought 1:1 O3 to O6 was amazing? read this abstract: http://www.ncbi.nlm.nih.gov/pubmed/12442909
ooh cold sore really? what have you been doing in terms of selenium? have any brazil nuts on hand? i wonder if there's a connection between the virus activity and the adrenal issues. also, i just tried searching neuralgia and selenium to see if there might be a sort of common denominator thing going on, and found this golden oldie:
Post-herpes zoster neuralgia: response to vitamin E therapy
http://archderm.jamanetwork.com/article ... eid=533670
i thought it was interesting that it brought in the viral aspect as well.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Trigeminal Neuralgia

Postby David1949 » Tue Jan 27, 2015 8:41 pm

Some folks will believe this and others won't. Watch the video and decide for yourself:

Chris's story

http://vimeo.com/101240449#t=7m0s


Marlene's story (Marlene is the woman who prayed for Chris.)

https://www.youtube.com/watch?v=xhRobcU7RqE
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Re: Trigeminal Neuralgia

Postby Jaded » Fri Jan 30, 2015 4:26 am

Thanks David - my mum prays every day

Thanks JL - couldn't see the article after the abstract as there is a paywall. Have just ordered more Vit E which was taking but not every day. And just ordered a high dose of the mixed tocopherols. Didn't realise the previous one was a lower dose.

Still taking selenium, but did run out for a week or so. Brazil nuts - hmmm. Kinda stopped eating nuts too much when I heard they have phytates and stop absorption of vitamins in food. I was eating far too many when I stopped the carbs anyway! :( I got very confused.

Well it's creeping back - yesterday I was working and then went out after work. First glass of wine since things got bad. This morning it's twinging more and a little more uncomfortable. Didn't get to take the mag calm yesterday but took 400mg in the tabs (citrate). Ohhhh. Very confused today…... :S

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Re: Trigeminal Neuralgia

Postby jimmylegs » Fri Jan 30, 2015 5:11 am

heya :) careful with the vit E - it should be E8 complex - 4 tocopherols and 4 tocotrienols. sunflower seeds are a rich source of vit e :D i looked up the distribution of e fractions in plant oils and found it's corn oil that has all 8. still looking for a gmo free organic product however :S lol not easy

i think eradicating entire foods or food categories on the basis of antinutrient content, vs attention preparation methods, is eventually going to be recognized as a species of throwing the baby out with the bathwater :S a high phytate diet is problematic, but in a moderate balanced way, it's not as large an issue.

choosing organic is one way to help reduce the phytic acid content in food. it's essentially phosphorus, which is overemphasized in conventional fertilizers. you don't get the same amount of phytic acid in foods grown using compost for fertilizer.

foods can be prepared to minimize the effects of antinutrients like gluten and phytate.

i went looking for some info and found this piece with lots of detail and academic references: http://www.westonaprice.org/health-topi ... ytic-acid/

2 brazil nuts per day will contain variable amounts of phytic acid along with their selenium. approx 140 mg or roughly 20% of daily max phytic intake. i haven't done as much reading on the antinutrient side of the equation but intuitively it needs the same kind of math attention that we need to do to ensure that we are meeting essential nutrient needs.

magnesium glycinate might be better for you than mag citrate (if you can find some, or have it shipped in).

hopefully your tracking will help highlight any issues. i can't see one glass of wine being the dealbreaker, but with antinutrient effects of both alcohol and phosphates, i guess you never know :S can't hurt to assess more detailed info about the day to day routine, in case any imbalanced patterns emerge.

i went looking for some of the lowest phosphorus seeds out there and found roasted pumpkin/squash seeds on the list :D

ten years ago, before i was diagnosed, i ditched my daily handful of trail mix on the basis of fat alone. in hindsight i consider removing those nuts and seeds to be one of the last dietary restriction errors that led to my dx in early 06.

both confusing, and important. all about the details, unfortunately! i hope you have a better day today.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Trigeminal Neuralgia

Postby Jaded » Fri Jan 30, 2015 11:52 am

Sorry. This is what happens when I worry - I get mixed up. It is mag glycerinate I am taking of course.

Thanks JL - the veg I buy are organic - not always the nuts. I shall be less 'black & white' about these things. The brazils are back - had 2 today and some nuts with them.

I am keeping that food diary too. I will see how the 'thing' goes over the weekend :)
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Re: Trigeminal Neuralgia

Postby jimmylegs » Fri Jan 30, 2015 12:32 pm

sounds good jaded! hope the weekend goes well.
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Trigeminal Neuralgia

Postby Jaded » Sun Mar 15, 2015 2:01 pm

Hi folks

It's been a while and I thought I'd give you an update.

I changed my meds a few weeks ago to nortryptaline starting on 50mg after increasing the amitriptalyne to 70mg. I had a few twinges at first.

But the other thing I did was see someone who is an upper cervical chiropractor. In the UK there is only one - Heidi Grant. Since I saw her a lot has improved and I have slowly reduced my dosage to 10mg - not just because the side effects are awful - but given I have not had a twinge in 2 weeks I thought it worth the risk. I feel like my balance has improved as well - I feel less wonky. She focuses on straightening the spine and thereby relieving any possible pressure there may be on nerves.

I had a accident a year ago and hurt the left side of my neck - the side the tn is one. So I wanted to get every possible cause checked. It is expensive, but there is no point in having money and not being well enough to talk or eat.

I am still keeping up with the supps - not going to let that slip again! I'm seeing my neuro soon - I will see what she says but right now things aren't too bad. It would be nice to be off the meds and have no tn but time will tell.

:)

J.
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Re: Trigeminal Neuralgia

Postby jimmylegs » Sun Mar 15, 2015 2:44 pm

nutrients only go so far! i have definitely benefited HUGELY from physical adjustments when needed. physio worked on me and taught me neck exercises that eradicated neck pain that i had suffered for YEARS. and the other physio in the same office did some work on my pelvic bones and corrected a problem with my SI joint which had been giving me pain pretty much around the clock for about a year. keep up the good work :D :D :D glad to hear you are without twinges lately. what are the side effects you mention?
take control of your own health
pursue optimal self care at least as actively as a diagnosis
ask for referrals to preventive health care specialists eg dietitians
don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Trigeminal Neuralgia

Postby Scott1 » Sun Mar 15, 2015 3:06 pm

I totally agree with JL on the physical adjustment as I have had quite a few recently. The best trained academic can't always help. It's a hands on job. Either they can or they can't make a difference. Recently I found an old man who does trigger point massage. It really hurts and it really helps. The others are left at the starting gate compared to him. He found a spot in an indentation at the base of the skull near the neck. I thought he was going to break my skull when he got to work on it but now my back is so much better now. The academically trained practioners can usually diagnose but if they haven't got the hands then you might have to look more widely. I'm glad you have found a set of hands.
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Re: Trigeminal Neuralgia

Postby Jaded » Mon Mar 16, 2015 10:25 am

The side effects are dehydration - everywhere - in particular my throat was so dry and I had terrible constipation! Well it seems to have lessened now I have reduced the dose but it was getting awful. :(

Yes I was quite wary about the chiropractic - being a 'scientist'. But it was worth a go and when I could physically feel the difference I had to concede that it might work! It's amazing how correcting the spine can make such a difference.

Saw my neuro today and got a glowing 'well done' for keeping up the good work.

One thing she did say, because I always ask her about research articles and new discoveries, is that mouse models do not replicate humans in 90% of cases. I had mentioned an article about a derivative of oestrogen that was found to remyelinate.

I will check and if it's not up here I will post it. If it does work, that would be the best news for us.
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Re: Trigeminal Neuralgia

Postby Jaded » Tue Apr 14, 2015 1:15 pm

Hey folks

Thought I'd give you an update.

Last week I saw a consultant about the 'neuralgia' in my face. As I am not having any episodes at the moment, they coudn't analyse my pain. I thought this peculiar. Why wouldn't anyone be on meds?

Anyway this chap - a specialist said he didn't think it could be TN and probably an isue with my neck. So he suggested coming off the notryptline. So now I am off the meds - they take a while to disappear from the system I guess but I hve noticed that my jaw feels sore on that side. Very odd!

I am keeing up the supps but finding it hard to eat greens. This is really strange - fruit and carbs are fine - it's just green veg and salad. Not sure why this is but I've been like this for a while.

I'll let you know how I get on - fingers crossed this TN type thing doesn't recurr!

J :)
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Re: Trigeminal Neuralgia

Postby THX1138 » Sun Feb 18, 2018 10:45 pm

Effect of coenzyme Q10 on mitochondrial respiratory proteins in trigeminal neuralgia. https://www.ncbi.nlm.nih.gov/pubmed/29424256

consumerlab.com wrote that 100mg coenzyme Q10 taken 3 times a day for 2 months along with standard medication significantly reduced the pain of trigeminal neuralgia. They cited the above stud
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