Posted , 9 users are following.
hi.
i am now taking 1200mg a day, 3 tablets 4 times a day. My tongue and lips are feeling a little tingly, I am light headed to the point I am losing my balance. Has any one else had similar effects?
0 likes, 19 replies
We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.
clint71 dawn66194
Posted
I've been taking 1600mg a day for about a month, as my TN has flared up. I experience forgetfulness, fatigue, and a little loss of coordination. 1200mg is generally the most a person should take in one day, so it's not surprising that you're having some adverse effects.
dawn66194 clint71
Posted
yes forgetfulness is another, I am having a conversation and am stuttering because I forget names and things. You are on a very high dose, is it taking all the pain away?
clint71 dawn66194
Posted
Unfortunately, no. 1600mg just barely allows me to work and parent with considerable pain. I've got the ball rolling on getting a Gasserian-Ganglion block. I've never been so excited to have a needle shoved into my face.
dawn66194 clint71
Posted
I know how you feel, I don't think people who haven't had TN understand what the pain is like, you would do anything for it to go away
clint71 dawn66194
Posted
Exactly. It's not nicknamed The Suicide Disease for nuthin'.
dawn66194 clint71
Posted
OMG I haven't heard that, can understand though if you haven't got an understanding doc then the pain could drive you to that. Good luck with your "needles" I hope it works. If you need a chat or to vent I will always answer you.
Dawn x
Tnhurtsme clint71
Posted
I'm in the Same boat pain all the time it's gets bad sometimes
maureen_25289 clint71
Posted
Would that be same as Radio frequency at all its jys I have Atypical Ondontalgia tooth pain from nerves and the needle burns off the nerve but wrong nerve was burnt there are 3 nerves be to the eye one to upper jaw then lower jaw my pain is in my upper one but lower was done instead. It's quite a difficult procedure to carry out correctly I was told. It has caused me a bit of numbness on my face around ear and but it doesn't bother me at all. Hope it goes right for you as I had it also on my lower spine for severe siatica and was brilliant result.
vicky59618 dawn66194
Posted
Hi there yes those side effects are common although the lip tingling is probably the tn I'm on 1600mg I take 200mg every 3hrs and leave high dose before bed which is generally 600mg along with 30mg amitryptilline been on this dose since beginning of may it's the weird restless leg feeling and bizarre hypersensitive nerve feeling mainly in legs and around mouth like as though when you're touched it's as though someone is testing your reflexes let me know if you experience it ps I've been having flare since December
dawn66194 vicky59618
Posted
Hi vicky
thanks for your reply. It's sounds like you are having a really bad time. I have had twitching in my legs and hands. The dosage seems to be taking the pain away. About 1/2hour before due to take tablets the pain comes back, it's awful. I hope your situation gets better soon for you. If you ever need to chat or vent you can always find me on here I will always reply.
eddie13 dawn66194
Posted
Hi Dawn,
I agree with Clint. 1200 is my neurologist's absolute max. And he wants additional blood monitoring when above 800. Am familiar wth the funny taste in mouth from high dose.
patrice95661 dawn66194
Posted
dawn66194 patrice95661
Posted
Hi. Constant pain starting on my upper lip and shooting up my face like an electric shock. Tried 2 four times a day but wasn't working, just been on this strength for 4 days
patrice95661 dawn66194
Posted
From my experience my TN got worse when I started taking it. Before it came once a year and it was bearable. My doctor prescribed me cymbalta. The side effects was horrible but it worked after a few days and my TN would disappear until a year later. One time it came and I found out about tegretol and started taking it on my own. Worst mistake of my life. My tn got so bad I could not eat speak open or close my mouth. It was so bad even the slightest movement of my head triggered horrible stabbing. All I could do was lay in bed and urinate on myself laying in my bed because trying to get up would trigger the attacks. I can cry thinking of what I've been through. Now I am off the meds. It acts up now again but very light.i just tske cod liver oil capsules and it calms down for a long time. I have read on here where others have had improvement with cod liver oil capsules. I take seven seas. Try taking it for a few weeks then try to slowly drop your dose. Sudden decreases makes attacks worse.
dawn66194 patrice95661
Posted
patrice95661 dawn66194
Posted
Yes I wouldn't wish trigeminal neuralgia on my worst enemy if I had one