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I know it's been a while since I've been here - it's been a difficult few months!

Anyway here I am with a diagnosis of trigeminal neuralgia. I don't want it to be that and I am trying to hold off taking the carbamazepine because of the side effects. It seems that if it's caused by 'MS' there is no surgical solution, just hard core drugs.

I'm not sure what triggered it - I haven't had a relapse in years. But today has been really painful so I may have to take the carbamazepine - it would be nice to eat!!


Has anyone here had this problem, or can anyone suggest anything that may help? I'd be so grateful.

Thanks

J.

hey, you! i've been wondering how you were doing! sorry to hear it's not so good.

just checking in quickly for now, will write more in the a.m. super late here atm.

Hi,

What medications are you taking, in particular have you changed a medication recently?

Regards

I'm taking lanzoprozole for h-pylori - I guess that's the most recent addition.

Might forget to take supps now and then...and have really eased off the fish oils. Could it be that??

I don't know but that's a pretty beefy medication.

The reason I asked the question was the Beta blocker I was on seemed to really exaggerate the neuropathic pain I had after my last attack and once I stopped it things began to improve. You're on a proton pump inhibitor. I didn't that was how you got rid of h-pylori. I thought it needed a cocktail of clarithromycin plus metronidazole or amoxicillin. (but I'm not a doctor).
There's a bit on proton pump inhibitors here that might be relevant - https://books.google.com.au/books?id=SR ... ic&f=false

Regards

I took the triple antibiotic therapy - didn't seem to work so have to take this to stop me feeling sick.


Thanks Scott

I can see it's not meant for long-term use. My docs said nothing about that.

Also it seems to use up B12 reserves.....and well that could be the culprit.

Thanks.

hi again jaded, sorry to hear you've been dealing with this

one of the things to watch with ppis would be magnesium.. if memory serves you were trying mag for other stuff before.. without much relief either i think. but may i ask how many mgs of mag from food and supplements you've been getting daily, lately? might need to bump it up a bit while on this treatment.

not a lot in the research about mag for TN but here's one quite recent hint:

Intravenous lidocaine and magnesium for management of intractable trigeminal neuralgia: a case series of nine patients
http://www.ncbi.nlm.nih.gov/pubmed/23712613

can you refresh my memory on your iron situation?

Iron Deficiency and Helicobacter pylori Infection in the United States
http://aje.oxfordjournals.org/content/163/2/127.short

also curious, because i seem to remember that testing has been a bit of a challenge, if you have any recent or not so recent bloodwork handy?

I recently had an exchange of emails with someone who had severe TN that had an interesting good outcome.

She felt her TN might be caused by MS so she contacted me.

I learned that she was a vegetarian and had recently gone to a more restrictive diet.

I suggested she see her GP and get a B12 shot.

She did and the results very very positive. PAIN gone.

She is still being evaluated by Johns Hopkins for MS.

jackD

Thanks Jack - yes I won't take the lanzoprozole tomorrow so I hope to take quite a few sublingual lozenges.

The situation is getting desperate - can't eat or talk much without pain.

JL - well since I had the h-pylori problem I have gone off my food - salads, green things - seem to want more carbs and that doesn't help the mag situation. I take 200mg if I remember. Not nearly enough is it? I was thinking of trying another brand to see if it's better absorbed. I've no idea what lidocaine is though - will have to look it up. After I take some mag. :/

Also the iron. My iron is usually low so have been trying to take the supps daily but I am taking more sups than food, so it doesn't happen daily. My GP said my iron is usually low - so wasn't worried. But that could explain the h-pylori. I should have stuck to it. I need to refresh my memory on which sups can be taken together. Beef for dinner tonight I think….

Thanks for the links and info JL.

I guess it will take a while for these things to work. I have not been able to go to work due to the pain and the inability to talk. Not that it triggers every time but it's not very professional to be sitting at a meeting and pulling faces when the TN strikes

Thanks for your help - I knew this was the best place to come! J x

yea no, lidocaine is just a drug painkiller, don't go trying to hunt it down.

if you can boost the mag to 600mg per day for a bit, that might help compensate for the diet issues while you are not feeling the best.

if you can find 'natural calm' near you, a nice drink of that per day could make a contribution. if not, i could send you some individual packets in the mail if you like also epsom salts baths (magnesium chloride flakes if you can find them) could help as well. maybe you could even make a super concentrate from the mag salts/flakes, and apply it topically.

hope you had a nice dinner and that you were able to get through it reasonably pain free!

Thanks JL - I think I can get some here. Epsom salt baths - great idea!

I actually managed to eat without too much trouble last night. Still there this morning - brushing teeth, washing face...a litte less angry.

I'll mega-dose the b12 and increase the mag. Thanks.

glad to hear you had a not-too-bad go of it last night! hope you feel even better soon.

This thing is very disconcerting. Yesterday I thought it was calming down and I'd be able to avoid the carbamazapine. But it's back and I feel like I may have to give the hard drugs a try.....

It's awful and I wouldn't wish it on anyone.

i wish it was easier for you to get bloodwork sorry to hear it's giving you a bad time