Trigeminal Neuralgia side effects Confusing/unbearable! Help/Support Needed!

Brain and nerves
1

I recently wrote a blog but wasn’t able to add to it so I thought it was best to write a new one. I am 26 years old and just diagnosed with trigeminal neuralgia a few weeks ago. The medication is helping somewhat and I will take whatever I can to make the pain lessen.

I try not to cry but since I was diagnosed with TN I have moments where I just break down and cry in my office or at home because the possibility of living with this pain forever is just frightening, I don’t feel like myself and I am concerned I will never go back to the way I was.

After the attack I can’t really concentrate like I used to and communicating is frustrating. I struggle to find the words I want to say and it takes me longer to communicate what I am trying to say. It’s very strange and people I work with are noticing. I come in and out of pain a lot and my migraines are very intense. The dose of medicine they want me on I can’t take because I am way too drugged to function.

Has anyone else had this happen where communicating and concentrating are difficult? Also, has anyone’s TN gone away on its own where you haven’t used surgery? I hear a lot about surgery but I’m praying this just goes away but I am not sure how realistic that is. Thank you for your help. If anyone can share other ways besides medicine and surgery that helped with the pain that would be great. I have heard of Acupuncture as a possibility.

P.S. so glad I found this site. I instantly feel better knowing there are other people that understand and can share their story.

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I/we all know how you feel and yes it comes and goes at least in my experience. I don't think there is any set trend to what,how and when episodes happen. We have to learn to accept and deal with it . I have a bio feed back unit that teaches some how to deal with pain concentration and relaxation. It takes a lot of mind effort and it probably doesn't or won't work for most but it may be another option you migfht explore.  I know what you mean about admin of to much medicine,my body doesn't want to cope with the effects of this family of drugs used in combatting TN. It takes over and I just become fighting mad that I can do my thing as normal. I've tried to sneak up on myself with added dosage of Lyrica but the defense mechanism quickly recognises and revolts. I really think one must try what others have tried with your doctors buyin and just experiment with all avenues and see if you can find an option that works for you.

You have to hang in there and play the cards you are dealt,you won't win evry hand of course but you will with pronounced effort, win your share.

dick

3

Hi Michelle

Im sorry you are going through this terrible pain and so young too.

I was in my early forties when I had my first bout. My Dr put me on Tegretol, which is the top drug, and even then it was a struggle at first, with the awful nausea and drowsiness, but it does subside eventually. I too had difficulty communicating as I couldn't talk for long, or eat properly and there seemed to be a few seconds delay before I could respond.

What mediation are you on?

Depending on your medication and the dosage your on, will seem strange at first but as with any medicine, and the person, everyone is different. It can be trial and error sometimes but it will settle in the end until such time, hopefully, the pain disappears. With me I was religiously on a 9 month cycle and 9 months remission. Then as soon as I retired it disappeared for six yrs. 

When my TN returned last yr I could no longer take Tegretol. Apparently as you get older it just does not work in the blood stream. Then I was put on different medications, all trial and error and whilst I was still in pain too. Eventually After a few ups and downs Pregabalin worked for me. 

I am presently coming up to the 9 months with TN and gradually reducing my dosage to see if the pain has gone.

I guess I was one of the lucky ones who didn't have to resort to operations and yes there are a few out there. People on here will advise you what there is and what worked or didn't work for them. I've heard of Accupuncture but never felt the need to advance to that level.

Im not aware of anyone here that has had TN and it just disappeared without operations, but you never know.

Can I make a suggestion, I would tell your colleagues at work what has happened to you and I'm sure if you ask them to bear with you whilst you go through this, then I'm sure they will understand.

I hope something works out for you and please let us know how you are getting on. 

Regards

Gloriana

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Hi Michele

Ive been reading your blog and I completely understand how you feel.  Ive had TN since the age of 30, Im now 46.  I managed for the first 12 years without medication, although I have to say I was in agony from time to time (felt like I was in a black hole), having had root canal treatment on a tooth for no reason whatsoever.  Two years ago I saw a neurologist in London who put me on Tegretol and to begin with it was brilliant as I could brush my teeth without feeling like my heart would stop, but after a while and still on a very low dose, I was admitted to A&E with extremely low sodium.  Anyway, Im now on Lyrica (Pregabalin) 300mg x2 daily and touch wood Im ok.  I can talk and eat!  To begin with the tablets made me feel awful, dizzy and like I was on another planet but I feel ok taking them now.  

You can try acupuncture (didnt work for me but dont think the chap was very good), cranial manipulation (didnt work for me as laying flat made the pain worse) but I have found, from time to time, that hanging my head upside down does help! Whether this is because the nerve is lifted away from the artery/gravity helping, I dont know but it works for me.  

There are many trails taking place in the US which can be found on google and I emailed one in Philadelphia who are currently doing trials using botox (injected directly in to the relevent nerve).  There arent many trials here in the UK as theyre funded by the NHS but there is a Professor in London who is having good results with a new drug Novel Sodium. Im waiting for an appointment to see her but have heard nothing so far!!

TN does come and go and the key is to remember that there are LOTS of other people out there with this condition (I personally know of 4 in this area) so you must not feel isolated.  

I wish you lots of luck and do lots of research!!

Paulax