Elavil question

[stefanies]

Without getting into my depressing story, has anyone tried Elavil for atypical TN pain? My pain from before my MVD is totally back, and I can't raise the Keppra anymore, it only helps with the zapping part. And the nerve blocks only help the occipital nueralgia. (when they decide to work!)
And I second the Zofran. I take it daily and have for over a year. It is the best anti-nausea pill out there...and I've tried most of them. They also give it to pregnant women for morning sickness, so it helps a lot of people. :)
So, any experience with Elavil?

[JeanC]

Hi, Stefanie,

I'm so sorry you've had such a bad experience. My current dentist said after I told him my story, these things happen only one percent of the time, but for you it's 100 per cent! Not much consolation, but at least he acknowledged that things had gone wrong.

I've been taking Elavil (or some one of the Amitriptyline family) for a couple of years now. It was originally prescribed, I believe, primarily to help me sleep through the night, but it definitely helped with the neuropathic pain (I found out the hard way when I forgot it one night). The tricyclic antidepressants act on neurotransmitters and that's why, they think, they help with pain.

If you do take it, titrate up slowly and drink lots of water and get plenty of fiber - it can be constipating at first :eek: but you adjust after a week or two. And sleep through the night? It was all I could do to get up in the morning and I was on 10 mg or less - usually less, or I'd stay in bed till noon.

I hope it helps! Wishing you better days ahead.

Jean

[stefanies]

Thanks for the response! I was getting nerve blocks and the doctor there recommended it when I told her my TN was back. She called my neuro, etc, and I have to call Wed to see if I can start it or not. She wants to make a few calls to someone else. I forget why.
My mom said she took it years ago and couldn't wake up either! It's funny, I guess I will have to stop my Ambien at night...this med seems to make you sleepy.
I welcome constipation. I have crohns so I have the total opposite problem! LOL
I guess we will see. I also heard that Wellburtin is making it's way on the market for nerve pain. I mentioned that (since it shouldn't cause weight gain) but the dr said she never heard of it being used for that. So we shall see. Maybe this will be able to at least lower the pain a bit so I can stop crying 50% of my day! LOL My husband will like that!

[JeanC]

I also heard that Wellburtin is making it's way on the market for nerve pain.
I think I've read that, too! Will see if I can find where and post if I do. Might have been either on the TNA site or maybe at the conference. There was a really good presentation by a pain management doc who likes to try the new stuff. He also doesn't like generics - says there's a wide range of strength in the generics so he avoids them.

And you definitely won't need Ambien with Elavil! Elavil is usually taken only at night when it's for pain and often as a booster when you hit the limit of your main med. I managed to get off the Elavil for a week or so but then started waking up at 4 a.m. again, so I'm taking a quarter pill again, 2.5 mg, and I sleep nine hours! And it's cheap here - less than $2.00 for 30 10 mg. pills. That's with insurance, but still ...

Baclofen is another good booster. For a while it was given as a main TN drug, but now it's often used when you get to the limit on one drug (like your Keppra) and gives it a boost to knock the pain down. I know it's been used with some of the others, don't know about Keppra.

I can identify with the crying - and I didn't have near the problems you have. I sure hope it helps, Stefanie. Good luck. And I'll go over that pain doc's presentation and post in the conference report. He covered 19 drugs in about half an hour!

Jean

[stefanies]

That's a lot of drugs! I don't want to try any of the really new ones b/c I can't be on it that long b/c I hope to get pregnant next year. I've been waiting long enough and I can't let this TN make me wait longer!
Guess where I read about Welburtrin?? Men's Heath Magazine! It's a guy's mag about nutrition and dating and they had an article in it about Neurotin and off-label uses! I cut it out and hung it on the fridge!
I bet most of the antidepressants work for nerve pain to a degree. I read Zoloft, Paxil, etc have had some success, but the Elival is really successful. I guess we shall see!
I'm at work right now. Love being able to check on line while sitting at my desk!

[MarleneW]

Stephanie,
I was given the baclofen for muscle spasms, it is one of the best drugs I have been given for occipital neuralgia, I also have trigeminal neuralgia and I take neurontin also. I was given the baclofen at 60 mg. a day after a very big surgery I had in September for the occipital neuralgia. The surgery caused really horrid muscle spasms in my neck so that was why I was given the baclofen ,I also took valium for a little while and still every now and then when I feel I need to. It helped also but I guess it is not a long term drug. The only downfall with the baclofen is it makes me really sleepy for a little while after taking it. I hope you feel better soon.

Marlene

[EE03]

Hi Stephanie,

I'm glad you're back! Elavil was the first drug I was started on and my Podiatrist was the one who gave it to me. I had no trouble sleeping either. Weight gain did follow, but then when I went to the neurologist, he switched me to Trileptal. I had unbelievable insomnia and then when I did finally collapse, I was comatose(sp????).

Anyway, the Elavil was helping with nerve pain in my foot and arm, so it probably helped with the TN too.

Glad to see you post!
Big hugs to you, Ellena

[EE03]

Stephanie,

I should have added that I took Effexor XR for about six months (225mg) and it worked great for nerve pain. Only problem was with continued use, I was losing my memory! Had an EEG, no problems there, thank heavens, but had to come off of it because of the memory loss!

Ellena

[missyjo]

Marlene-
I developed occipital neuralgia in May, after a MVD in December last year. I have had several nerve blocks that only lasted a week each time. I am starting to have the pre-tn symptoms again and he put me on baclofen. He said that it might not help the ON. I havn't started taking it yet, I am to afraid to after being on such high doses of trileptal and lyrica last year. I am afraid of "the fog". Did the Baclofen help your ON?
Melissa

[stefanies]

I've been lurking on the site, but never knew if I should post or not...I'm a little nutty right now..
I never heard of the Baclofen you girls are talking about. I'll have to check it out!
I was on Trileptal. I think it came after Neurontin. The Trileptal was the best! It took the pain right away, but had heart issues with it and had to come off. I was very sad.
I'll have to see about the Elavil. I know it may sound shallow, but I already had 45 extra lbs after the Dilaudid for 6 weeks and finally lost 30 of them. I can't afford to gain more if I hope to get pregnant some day. Maybe my TN will take a vacation for 9 months for me?? LOL
The ON, no one seems to care about..it's like, "here's a nerve block". They don't seem to have many answers for that one....we can put a man on the moon, but give them some neuralgia, and they got nothing for us!
PS - Husband and I just got back from Sint Maartin and loved it! Yes the pain was with me, yes flying made it worse, but yes it was worth it! :) It was nice to get away from life for a little bit...memories...

[JeanC]

Hey, Stefanie, we know nutty - we've all been on some combination/permutation of these mind-numbing meds so you post anytime you feel like it! :) I'm assuming you're the Stefanie from the old forum who had a really hard time with all kinds of complications after your MVD ... right? Don't want you to have to repeat your story, so if you're the same one (and I don't even want to think about the odds of two Stefanies having TN AND complications after an MVD :eek: ), don't worry - we've all been wondering and worrying about you while BrainTalk has been down so glad to see you back! Though sorry things are still so bad. :(

I've found my notes AND the slides for the Medical Management talk so will post what I can asap. Do you have a copy of Striking Back? Most everything is in there except the really new stuff that he mentioned was looking promising and this guy had some slightly different approaches than I'd heard before. Very aware of side effects and trying different combinations to minimize them.

I'm so glad you were able to enjoy your vacation! :) That's great - you pull up those memories when you need them. Take care - I'll be back soon with more info.

Jean

[stefanies]

Hi Jean! Yes, it is me. I had my MVD in 1/06.
I do have Striking Back as well as that new TN book the TNA is offering. It's OK, but not as easy to read as the Striking Back. A lot of errors in it, but I guess as a writer, they glare at me!
It's funny, this TN makes you feel crazy. Like your whole personality changes when you are having a bad day. I am also noticing that my pain gets worse as we head towards October. I wonder if that is b/c of the crazy weather? I don't know b/c I had the MVD and the pain went away a bit, so who knows?
I had to change my name, b/c the site wasn't taking my old user name, so I just added an s.
Stefanie

[JeanC]

Hi, again, Stefanie, and welcome back!

I just wanted to say Baclofen/Lioresal is also written up in the Newbie thread and Kauffman's U. Manitoba medications list - Medications (http://www.umanitoba.ca/cranial_nerves/trigeminal_neuralgia/manuscript/medications.html) - although that's the ONLY place I've seen Baclofen spelled with a ph! ;)

AND B12!!! Irene Wood gave a presentation at the conference on a B12 Supplementation study she did where her patients got some reduction in their TN pain (and most docs recommend B12 when you present with neuralgia). I will post this in the conference report, too, but if you take B12 supplements (or even if you don't) you want to be sure you have plenty of "probiotics" - Acidophilus and Bifidus - which you can get from yogurt (plain with live cultures to be sure they're not overpowered by added sugars, etc.) or from capsules at your local health food or drug store vitamin counter. And of course, check with your doctor before starting any such program - I don't know how it would affect your Crohn's disease.

I won't go into TOO much detail here ;) - want to get my facts straight - but B12 is essential in myelin formation and Irene's theory is that a possible underlying cause of TN is that the compressing blood vessel wears away the myelin faster than our bodies can replace it due to B12 deficiency - often not because we're not getting enough but because we aren't absorbing enough B12 - possibly because of deficiency of probiotics. That's it in a nutshell anyway and it could explain why some people show up in autopsy with vessels against their Fifth Cranial Nerves but didn't have TN symptoms. Below is Irene's response to my question of daily dose and form of B12. Take care --- Jean

From Irene Wood - TNA - Aus. Pres.:

"Re: B12.
What I have learned from the study is that folks on the 1000mcg of Cyanocobalamin only begins to have an effect after about 6 weeks. I have thought about doubling or increasing that 1mg to about 4 mg... but not sure whether it would be wasted... because all excess are excreted.

However, the Methylcobalamin is compounded at 4mg and it can be purchased commercially at 5mg....Folks on these mega doses have a more immediate effect. Most of my patients are just using the 1000mcg. ( thier choice).
So lets take it that the minimum dose required would be 1000mcg = 1 mg per day.

Don't forget the probiotics ( ACIDOPHILUS and BIFIDUS) need that to help in the absorption / conversion problem of B12.

IRENE WOOD President TNA AUS."