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Carra

Trigeminal neuralgia.

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Carra

I had been taking amitriptyline for neuralgia on my face and head for over 10 years, but I stopped taking it a couple of months ago as it was causing heart palpitation I thought I would be ok, but the excruciating face pain started up again so I have started Pregabalin . I can normally only cope with the lowest possible dose of any medication, so I'm wondering if anyone has experience of Pregabalin, and what dose has given relief. I started on just 25mg, and the pain is subsiding already. I was able to control the pain before with just 10mg of amitriptyline. The pain goes up through my jaw, into my ear and up to the top of my head. If anyone has experienced this, you will know how unbearable the pain is. This was the first MS symptom I had many years ago, long before diagnoses, and it still plagues me to this day. I have SPMS now. Many thanks to anyone who shares their experience of this with me.

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Crafty Cow

Hi there,

 

I too suffer terribly with trigeminal neuralgia, and I have just started taking pregabalin. I have moved from gabapentin, of which I was taking 600mg three times a day for back pain, post surgery. I am taking 75mg of pregabalin twice a day, but if the pain gets too much I take 150 at bedtime. It gets me though the night, which is nice. But I do feel really tired next day, but that could be attributed to fatigue. If it kills the pain and you function properly, then keep at them. Eventually your body does get used to the dose, and the side effects are lessened. Today I woke with the neuralgia, and the 75mg eliminated it after a couple of hours, so I can't complain.

 

Incidentally, this was my first symptom too back in January and my god, what a decline I have been in ever since then. Gone from feeling 41 to 101 in a matter if months lol.

 

Hope this helps.

 

Sam xx


Follow me, you can follow me....and I, I will not desert you..............

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Lindylou

Hi Carra,

I take pregabalin for neuropathic pain, I`m, currently on 250mg a day but I can increase to 300mg if I feel I need to. It has definitely helped with the pain, it is now more bearable. I also get pain in my jaw which goes up the side of my face but it is bearable pain which is probably due to taking the pregabalin. I also have SPMS. Also I haven`t had any bad side effects since taking it apart from a dry mouth which is a lot more bearable than the pain! Hope you find some relief soon.

Linda x

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Carra

Thank you both for replying. I will gradually increase the Pregabalin. It's not until you stop taking something that you realise it has been working. The amitriptyline was obviously working. I foolishly thought I would get away with not taking anything. A word of caution to anyone currently taking amitriptyline though......I had horrendous withdrawal symptoms coming off just 10mg. Probably because I had been on it for over 10 years. It took 6 weeks to pass.....terrible anxiety, racing heart and restlessness. Just awful! Thanks again. X x

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Carra

Thanks Scully, for the link to the previous posts. What a time you had! I too went round in circles from dentist to neurologist to GP during this recent attack, as it was so severe. I actually had a tooth extracted due to this pain when I was in my twenties, only for the pain to still be there. It was a nightmare at the time, but I had no idea then what was wrong. There is no other pain like it. Thanks again. X

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vertigofalling

I'm on amitriptyline for trigeminal neuralgia. It really hurts.. does this drug work well!? What's pregabalin? Which is best? Sorry to be a pain but everyone including my doctor didn't even know it was related to ms..So anything I can ask for to help will be amazing!

I'm also on tramadol and naproxen.. which do zilch. Thanks again. Luci xx

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Crafty Cow

Hi luci,

 

I have been suffering this again the last few days, and to see this post come up again seemed such a coincidence!

 

The thing with TN is that it affects the nerve, so nerve modifying drugs such as gabapentin and pregabalin, and the also the amytryptilline which is an antidepressant but used for nerve pain, are the best ones to have a go with. TM is a symptomatic type of trigeminal neuralgia, and to hear that your gp has not heard of this is disturbing to say the least! Have a return journey to your doc and see what they can offer in terms of these drugs....tramadol is a good pain reliever, but make s me loopy so only a good short term fix, and naproxen is never going to touch TM. Historically it isn't even touched by ibuprofen so naproxen is equally cursed in this battle!

 

Good luck

Sam xxx


Follow me, you can follow me....and I, I will not desert you..............

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vertigofalling

My doctors a little bit ERM. Old school lol. I found out today when I rung regarding TN that I have been diagnosed with ppms... three months ago. Nobody felt it necessary to inform me. Anyway i digress. I'm taking the amitriptylene, 30mg at night to help. And tramadol although that makes the vertigo so much worse. What are you on now? I can't stand the Tn pain I'm not a happy bunny when suffering.

Apparently tn and ms being related is basically unheard of..? To my doc at least.

Hope your OK Sam. Xx

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Procrastinating
Stumbler

Yes, there's the problem, the Doctor is a General Practitioner (GP), so knows a bit about everything, but little in-depth knowledge of complicated conditions.

 

This is where the MS Nurse can excel. They can identify the right treatments for your symptom and then ask your GP to prescribe it.

 

If you haven't yet been assigned an MS Nurse, you may be able to find them here, http://www.mstrust.org.uk/information/services/ and self-refer. That may save some time.

 

:moonieman:


Edited by Stumbler

John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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vertigofalling

That's great advice Stumbler, I shall do that today.

The pain is driving me mental I don't know how much more I can take. Xx

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Crafty Cow

I find that gabapentin works well, but sometimes I need to up the dose and it makes me a bit zombiefied lol

 

It's not too bad today, but I am suffering really badly with neuropathic pain in my right hand, but unfortunately, pain killers won't touch it as much as I would like.

 

Hope it's started getting easier sweety xxx


Follow me, you can follow me....and I, I will not desert you..............

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Sluggish
Marina

I get TN at least once a month these days. Apparently mine is the "atypical" type, in that it's not the momentary sharp shooting pains in teeth that make you think you've got severe toothache, but is all over the left side of my head, face and neck all the time:

http://www.umanitoba.ca/cranial_nerves/trigeminal_neuralgia/manuscript/types.html#atn

http://en.wikipedia.org/wiki/Atypical_trigeminal_neuralgia

 

I can't take amitriptyline or pregabalin because of side effects. However, my neuro prescribed Tegretol which is an epilepsy drug and is also specifically for TN. It works for me. But, it interacts with other drugs I take, eg, HRT and thyroid as well as giving me head pains, so I now only take it when I get an attack of TN and it shortens its life from 3+ days to 1 day.


Marina

(belated DX in June '05, SPMS)

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vertigofalling

My ten seems to be and ache over my right side of head and face with shooting electronic feeling pain. Constantly hitting me. I hate it. Lol I know what you mean.. I actually am a zombie I swear! I heard about anti convulsion drugs helping tn? Does it help a lot?

Thank you all for being so nice to me you have no idea how much I appreciate it xxx

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Carra

Yes, trigeminal neuralgia is a real challenge. It was my first MS symptom many years ago, long before I was diagnosed. I also have it to varying degrees all the time, in my jaw, ear, side of face, behind my eye and even on the top of my head. However, when it flares up really badly the pain is unbearable, especially in my lower jaw and teeth. As I can't take drugs like Pregabalin or amitriptyline either, I just have to take Tramadol when it is very severe. I managed fine with amitriptyline for over 10 years, although I would have occasional heart palpitations with it. The heart palpitations became very bad eventually though on a daily basis, so I had to stop it. This is a known side effect of amitriptyline . Unfortunately none of those drugs are easy to take. I hope you all find a drug that works for you. Good luck. X

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vertigofalling

gosh, that sounds awful. I feel your pain. ill be going back to the doctors. just seems so ridiculous that everything takes so much time with all MS related issue. its enough to drive you mad if you weren't already. great advice guys, thank you xx :hearts:

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Reggie

l suffered with TN for years. GP sent me to ENT - they did lots of 'orrible tests' - nobody seemed to connect it to my MS - Then about 6yrs ago - l was introduced to LDN - and the TN went.

[ l do have my fingers crossed right now as l do not want to tempt fate] The pain from TN was so bad l could have shot myself - l know -an awful thing to say - but that is how bad it was. That sharp stabbing pain through the ear/jaw. Could well be a coincidence - but the LDN makes me feel so much more my old self anyway - more positive. Not keen on taking anything that has nasty side-effects. Have enough to put up with. Well we all do. :wchair:

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Sluggish
Marina

I've been on LDN since Jan 2006. Wish it took away my TN but sadly it doesn't... But I'm delighted for you, Reggie, if it helps yours :hippy:

 

On the other hand, as I have the "atypical" kind of TN, I don't get the sharp momentary stabbing, I just get awful, sometimes throbbing, constant unrelenting pain all over one side of my head and neck (like right now!). So maybe LDN maybe helps with the more typical stabbing kind of TN?


Marina

(belated DX in June '05, SPMS)

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