Trigeminal Neuralgia

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Re: Trigeminal Neuralgia

Postby Jaded » Sun Jan 25, 2015 9:01 am

This is crazy!

Today is my best day in over a week. After your helpful advise I stopped the lanzoprozole and am taking high does B12 (patches and sublingual methylcobalmin). Thanks Scott. And I am taking the high does mag - managed to find the one JL recommended. Thanks JL.

I have also realised that around the same time i started taking HRT.

I am still taking this but I need to speak to my GP. It was supposed to stop the night sweats and give me more energy. Yes it did stop the night sweats, but not felt too much gain from it as far as energy. One of the things it does warn against is blood clots - so I guess it makes the blood thicker. In my research I came across some people with TN who had benefitted from taking blood thinners. Quite worrying.

Sorry for that last post. Yesterday was awful. I also had some osteo treatment on Friday as I did have a serious fall while running a year ago - and he released some tightness in my neck - the C2 joint which is close to the nerve supply to the face. Maybe the reaction was a worsening before the improvement.

I think there were many things that made this happen but one thing I have realised is that I can't neglect my nutrition, so I am back on it.

Also I aim to improve my iron levels - trying to get rid of that hello-bacter pylori infection.

Thanks for unlocking the mystery for me! I feel back to my old self. :)

J x
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Re: Trigeminal Neuralgia

Postby jimmylegs » Sun Jan 25, 2015 10:17 am

hey glad you found it, and that you are having a good day! magnesium will help keep your blood moving as well by the way :)

general interweb info:
https://www.google.ca/?gws_rd=ssl#q=mag ... d+pressure
and academia (imho, meta analyses of high quality studies are the cat's meow):
The effect of magnesium supplementation on blood pressure: a meta-analysis of randomized clinical trials
http://ajh.oxfordjournals.org/content/15/8/691.short

did we talk much about pairing iron and vit c foods before, jaded? also did you not have a genetic expression thing in the picture? there are a lot of zinc fingers in that little pandora's box.. can you refresh my memory re whether you were able to get a zinc level? i know prices for private testing can be prohibitive over there. note here that zinc status is low in kids with h pylori infection:
Serum Ferritin, Vitamin B12, Folate, and Zinc Levels in Children Infected with Helicobacter pylori
"zinc levels were 95 ± 48 and 87 ± 31 µg/dL (P = .538), in groups 1 and 2, respectively."
(healthy controls zinc would be more like 120... in this study the 'controls' are not 'healthy' rather group 2 are sick, but not h. pylori infected - suggests to me that there is a zinc window to which h pylori is best adapted).

taken all together, and given what we know about iron and zinc interactions, i would imagine that just throwing iron at the situation might have consequences for zinc status, and possibly associated impacts on hemoglobin synthesis.

check this out too - zinc homeostasis mechanisms might be out of line which would mean you could need to be extra careful not to end up in a dietary zinc deficit situation. IF i am remembering your situation correctly that is :) http://www.sciencedirect.com/science/ar ... 2X01800481

hope you continue to improve!
take control of your own health
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don't let suboptimal self care muddy any underlying diagnostic picture!
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Re: Trigeminal Neuralgia

Postby Jaded » Sun Jan 25, 2015 12:33 pm

Thanks JL

I am still taking zinc - never stopped that. 50mg religiously every morning with Vit C 1g, COQ10 200mg, Probiotics and copper (recent reintroduction :) ) and fish oils. OK the fish oils slipped some days. I know this is a terrible thing I did. Another one!

I failed to keep the rest up on regular basis - well especially the mag.

Have not had bloods done recently. I think last April my zinc was 113. My blood pressure is always low - was tested recently for the HRT new script and it is still very low.

If I take iron it's in the evening - which is why the mag suffered. I thought iron and mag would compete?

I know mag and zinc shouldn't be taken together.

I need to refresh my memory on what can be taken together and what can't.

In the eveing I take ginko, turmeric with the B complex usually. It's with this combo that I'd take iron. I read that taking fish oils with the turmeric was good but not done that often. And sometimes I add root liquorice. My adrenals were exhausted when tested in the summer so this is when I started with this. Was also taking rhodiola but although I have some, I have let that slip too.

At lunch I usually take the extra C, D, K2 and E and selenium.

I've just ordered ubiqonol in place of the COQ10 and started on iodine (today!). A GP with MS who I buy LDN from (been taking that for years) says this helps energy levels.

I need to work out if I should add ALA and more antioxidants. But for now, I'm pleased that the TN has gone so will focus on the mag and B12.

Oh and thanks Jack - forgot to thank you before. :)
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Re: Trigeminal Neuralgia

Postby jimmylegs » Sun Jan 25, 2015 12:47 pm

ok good to hear :) can you confirm the units for the 113 result pls?

sorry i was mixed up - thought if you were on meds for BP that it would be high. my own low BP has traditionally been related to dehydration. could that be applicable in your case?

smart to keep the copper in the picture.

the last time i thought i *should* probably take iron, i went for bloodwork around the same time and my level was 150 when i only wanted it around 80-100. so i decided my near-daily spinach-red pepper intake was doing the trick. along with all the other iron-rich goodies scattered throughout my week :)

if i were to take iron, i would probably take it specifically with mag oxide, to help make sure the iron wouldnt back me up. what if you did iron one evening, magnesium the next?

do you happen to have gone through your food and fluids lately, to assess dietary intake of essentials? or the pro- and anti- inflammatory balance? i am wondering if you might be able to thin out some of the pills you've been taking. that said i still make my way through a decent little pile myself, each week!
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 lyndacarol » Sun Jan 25, 2015 2:24 pm

Jaded wrote:In the eveing I take ginko, turmeric with the B complex usually.

Taking a B Complex with a high folic acid content can mask a B12 deficiency; and taking folic acid, if you do have a B12 deficiency, will worsen neurological symptoms.
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Re: Trigeminal Neuralgia

Postby Jaded » Sun Jan 25, 2015 3:48 pm

Lyndacarol - thanks. I checked and it's 400mg - isn't that the standard?

I don't take folic acid on its own.

JL - The zinc was 13.3 - but can't recall the units. I will check tomorrow. And the high BP was just a warning as a poss side effect on the HRT. I need to discuss this with my GP to see if that could be giving me these symptoms.
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Re: Trigeminal Neuralgia

Postby jimmylegs » Sun Jan 25, 2015 5:13 pm

ok 13.3 that sounds like the units will be umol/L. if so, would be better if you can manage to get it up a bit closer to 18.
i double checked the lit and haven't found anything yet to suggest there would be anything problematic in pushing serum zinc up towards 18 in your case.

k thanks for the clarification on the BP :)
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Re: Trigeminal Neuralgia

Postby Scott1 » Sun Jan 25, 2015 6:34 pm

Hi,
Switching to Ubiquinol is fine. I believe it costs more. The majority of the the good tests results have been done with Ubiquinone as Ubiquinol is a relatively recent commercial development. Ubiquinone is the stable form of Q10. Once ingested the body reduces it to ubiquinol which is the antioxidant form that makes up practically all the circulating Q10. The two forms readily convert into each other. There is evidence that ubiquinol is more bioavailable as a supplement. Could I suggest you add L-carnitine? That is the shuttle that transports ADP into the mitochrondria and ATP out of the mitochondria. The greatest quantity of ATP is made in the mitochrondria. The other methods are rate limited and very slow.
The ATP donating a phosphate molecule to the sodium-potassium pump is where the energy comes from. Not the form of Q10. So the objective should be to make ATP so you can spend it. The Q10 is the electron clearing house inside the mitochondria and is key in the electron transport chain. You need the carnitine to get the ADP across the mitochondrial membrane and the ATP back out.
Regards.
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Re: Trigeminal Neuralgia

Postby Jaded » Mon Jan 26, 2015 3:06 pm

Thanks Scott.

I have a supp which I must have ordered some time ago. It's Acetyl Carnitine and Alpha Lipoic Acid together.

Maybe it's time I started taking them :) Sounds like they could help wth energy levels.

J.
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Re: Trigeminal Neuralgia

Postby 1eye » Mon Jan 26, 2015 3:32 pm

Haven't needed carbamazepine since procedure in 2010. Glad too, because my dentist told me it was affecting my gums. Sorry you are having nerve pain. My brother got shingles and he is now thinking of having his trigeminal nerve severed.
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Re: Trigeminal Neuralgia

Postby lyndacarol » Mon Jan 26, 2015 7:21 pm

Jaded wrote:Lyndacarol - thanks. I checked and it's 400mg - isn't that the standard?

I don't take folic acid on its own.

I don't know that there is a "standard" for folic acid in a B Complex. As I recall, 400 mg was the amount in the B complex I used for years – until last January (2014).

In the US and Canada wheat flour and all products made with this are required to be fortified with folic acid. Prenatal vitamins are also heavy on the folic acid. Multivitamins… Folic acid will not correct a B12 deficiency.
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Re: Trigeminal Neuralgia

Postby NHE » Tue Jan 27, 2015 3:47 am

lyndacarol wrote:
Jaded wrote:Lyndacarol - thanks. I checked and it's 400mg - isn't that the standard?

I don't take folic acid on its own.

I don't know that there is a "standard" for folic acid in a B Complex. As I recall, 400 mg was the amount in the B complex I used for years – until last January (2014).

That's probably 400 µg which is the RDA for folate. 400 mg would be 1000x more.
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Re: Trigeminal Neuralgia

Postby jimmylegs » Tue Jan 27, 2015 8:39 am

yea that's pretty clearly a typo i should think. the b complex products i have used in the past varied between 400 ug and 1mg (aka 1000 ug)
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ask for referrals to preventive health care specialists eg dietitians
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Re: Trigeminal Neuralgia

Postby Jaded » Tue Jan 27, 2015 9:06 am

Yes thanks guys and gals - it is micrograms. And yes, all the B complex supps seem to have this amount - even the B100.

I was on B100 - just reordered as B complex. Not quite sure why. But also have some B12 patches which I am using daily. They are 5000 mcg and are to be kept on for 24 hours. I'm never sure how much is actually absorbed - a fraction I should think. And I don't just mean from the patches. Also am taking the sublingual methylcobalamin :) Just to make sure!

And mag. Lots of mag too.

Sunday was fantastic in that everything was calm - just felt half a twinge. Had a few more yesterday and today again there are twinges. Quite scary as I am not sure why it calmed down if it wasn't the extra supps nor what is making it happen again. No pain at this stage.

J.
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Re: Trigeminal Neuralgia

Postby jimmylegs » Tue Jan 27, 2015 9:08 am

glad there's no pain! curious if you are logging everything you're eating and supplementing lately? could be some telling details over time in there, if you keep records.
also curious about the details of the dietary/supplemental fish oil inputs you had mentioned above?
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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