tegretol works on burning and stabbing but...
Posted , 2 users are following.
Hi friends,
i have had Tn for nearly 3 years and am on Tegretol (700)and Nortryptiline (30)which works well for me. It seems to cut out the burning and stabbing shooting walloping type pains Which I am thrilled with believe me. I do notice what I am left with lately is more milder twinges but a feeling of tightness in my v2 zone almost like someone has injected a filler in my face. This is not constant it usually starts up by my triggers like hot or cold drinks, brushing teeth, too many facial expressions, wind and driving/vibration. I get a tight dragging feeling in the upper teeth, sometimes an ache. I am fine with this of course compared to the pain I had before. But my question is how common is this while on Tegretol? And is this a sign I might need to up my Meds soon?
I would prefer to stay on the lowest dose as most of you understand plus my liver enzymes were a little bit elevated but might be just a transient thing as it's looking better now.
Plus I just wanted to say I really get a lot of strength from you all and hope that we all get some relief.
1 like, 3 replies
susan33651 jule44
Posted
Hi,
I get a tingle-numb sensation in my cheek too (a bit like a spikey footed spider crawling) before I need to increase the dose of the Carbamazepine. Once it's been increased the sensation goes away after a few days. So it may worth discussing it with your GP. I have to be really careful with the medication because I have Autoimmune disease and I have medication for it which can also affect my liver. So I understand how difficult it is to get the right balance without causing harm to oneself.
Best wishes.
jule44 susan33651
Posted
Thank you for your reply Susan
i totally understand the spider feeling! I get a few spots that tingle and buzz now and then almost like insects crawling
Its a shame that the TN websites don't really mention all the other strange sensations that accompany TN pain.
I will talk to the neurologist in a few weeks so I will surely discuss If I can increase this med and to what level.
By the way I also read your other post and I am really sorry that you are going through rough time with this awful condition. I couldn't imagine having it on both sides along with an autoimmune disease. My heart goes out to you.
susan33651 jule44
Posted
I take each day as it comes. I have days where I do very little because I am just so tired. When I feel OK I do as much as possible while hoping that everything stays dormant (as it were!). I avoid fans and too much sun as either one can trigger the TN or the skin and joint issues. I should add that life has been a great deal better since I have been on the various medications. I have had a lot of support from my GP and the specialists, to be truthful I have been lucky.
On the plus side the pain only affects one side or the other. Usually the maxillary and ophthalmic branches. As I type this the latest attack is just about over, I think after almost an hour it damn well ought to be. It's taken the hour to type this post! Some attacks are less painful than others. The worst ones are those that start in the eyes and just go on and on.
The best advice I can give is to find out more about TN, the drugs and procedures available. Get a good specialist. And most importantly, take the medication on time. I set my alarm and religiously take it on the dot! Maintaining steady serum levels of the Carbamazepine will help to reduce the number of impulses and therefore the pain too. Also, tell your family, friends and work colleagues, you'll be surprised at understanding they can be.
Thank you for your kindness and I wish you all the best in finding a way to manage your experience of this hideous condition.