Do I have Atypical Trigeminal Neuralgia ?
Posted , 12 users are following.
I have been suffering with facial pain since October 2011. It seemed like toothache but moved from one tooth to another. I went through all the general protocol of dentist, orthodontist, and GP. My pain was intermittent and excruciating so I totally feel for what you describe. My pain is totally at the left side, but like you can be in my jaw, cheekbone and eye area. The pain went into remission and returned in 2014 at which time my GP diagnosed TN. I was put on Tegretol which like you I struggled with so after a short time was then put on Gabapentin (Nurontin). I stayed on this until December and then decided to come off as my pain had stopped. However it resurrected its ugly head with a vengeance in May this year. I have gone back to Tegretol and after a trip to A and E when the pain was at its worst, a constultant there put me on a higher dose (600mg) combined with Pregablin/Lycol (150mg). This was amazing at coping with the pain, but OMG side affects are terrible.
I have managed to reduce the Tegretol down to 200mg which helps but the pain is not totally eliminated with doing this. However I feel I can cope better as the side affects leave me so tired and drunk. I also feel dizzy and my vision is affected. I cannot look up or down or left or right quickly as my vision goes blurred. I also feel lightheaded and like I am going to faint. Some days I feel quite low and emotional, which for my "eccentric" personality, is not a nice feeling. I am not sure if these side affects are part of TN or the medication.
Apparently my MRIs have revealed a vascular loop on my left side (where I have problems), but other than that all other tests seem fine. I also experience pain in my left shoulder and arm and have also had it in my left leg. This started in October 2014 with a sort of pins and needles sensation. I don't know if this is connected to TN? I know it isn't the medication as I have experienced it even when in remission and stopped medication between December 2014 and June 2015.
My last consultation with my neurologist was in July 2015 at which time she has said my symptoms are baffling her and not classical TN as my pain is 24/7 and not short sharp burst of a few seconds or minutes. She wants to refer me to yet another consultant for a third opinion. This first specialised in epilepsy so she was quick to refer me to the second one who specialises in MS. Do all consultants want to pass the book?
I too would welcome feedback from anyone. Thank you.
2 likes, 24 replies
christian95748 janine34099
Posted
how is it going? Any improvement whatsoever?
Take care
Chris
janine34099 christian95748
Posted
Apologies for the delay replying. I've had a pretty painful week and back living on soup and yoghurts as chewing increases pain. However I've felt much better for the last 3 days thank you.
How are you feeling? Hope the pain has eased for you a little.
I haven't tried acupuncture so if you go ahead please let me know if it works.
You said your GP doesn't think it is TN because your pain is 24/7, have you discussed type 2 TN (atypical TN)?
Also have you had an MRI scan yet?
Hang in there and keep positive.
Janine x
PS your English is amazing!
christian95748 janine34099
Posted
I am very sorry to hear you had such a painful week. This thing is just so unpredictable right... well I have some bad and then better days but days but my pain is always there. For me it is very hard to describe. It is a constant nagging and pulling pain in my lower teeth and gums on both sides. Sometimes a get a tight feeling in the cheeks as if someone would crush my face. And there is a burning feeling to my ears as well. The pain is milder when I get up but as time passes the pain gets worse.
I did have an MRI of the brain which came back clear and I aso had a CT of the sinuses which was also clear.
I have not talked about atypical TN with my GP but I will do that. I have been on Lyrica (Pregabalin) for 2 weeks now and the pain is still the same. There are moments when I think 'Yeah, it finally kicks in' but then it goes like BANG and the pain is back. Pretty nasty stuff that is happening to us.
Janine, I had facial trauma in May and this is when all my problems started. Do you think they it a nerve when they kicked me in the face? I would sue them but the police stopped investigation unfortunately...
I will try acupuncture and I will keep you up to date. I wish you a pain-free night Janine.
Yours
Chris x
PS: thank you so much. If you have Facebook, feel free to add me under the name "Christian Skrianz".
ibrahim57343 christian95748
Posted
Ive its been 3 weeks that iam suffreing form tn type2 have this pain 24/7 after a head injury ,
I need your help this pain is driveing me crazy , how have you couped with the pain any relife from anything ?
Hope you are feeling much better
ibrahim57343 janine34099
Posted
Hope you are feeling better
My gp told me i have tn type 2 , its been 3 weeks now i feel this crazy pain that wont go away it came and went now its constant on my left tempel and down ,
I need your help and advice plzzz
What has worked for you?
any suggested treatments or meds ?
jocelynrenee janine34099
Posted
Your TN sounds like mine. I was first diagnosed when I got it and it stayed 24/7 for over a week. I couldn't think, speak, eat, or sleep. I considered suicide after a few days - I see why it's called the suicide disease. With your other symptoms coming up, it may be MS. I am being evaluated for MS as well.
After my initial attack and diagnosis, I started also getting TN on the other side, but the stabbing intermittent kind. Any super strange presentation accompanied by other neurological symptoms seems to hint at a neurological condition. Hope the tests find something for you.
ibrahim57343 jocelynrenee
Posted
How are you ? Sorry for what you are going throw hope you are better
How is your pain managed now any relife ?
They havent put me on meds yet , due to nit haveing a proper diagnosis,
jocelynrenee ibrahim57343
Posted
I first took carbamazepine, which worked well but I had an allergic reaction. So I switched to gabapentin, and that has worked quite well for my initial TN pain (atypical - constant). However, now that I am also getting the typical stabbing pain, the gabapentin doesn't work very well for that. I just talked with my doctor the other day and will be trying primidone, another anti-convulsant, this week. Luckily for me, the stabbing intermittent pain is actually much easier to deal with than the constant pain. It is there and then it's gone.. and it doesn't seem to be as intense. The constant atypical pain I get is excruciating - I never knew anything could be so painful. So I hope I can find something that works on it, but overall I could live with it if I needed to.
Overall, pain medication has done very little to even touch the pain of TN for me. Anti-convulsants are the only thing that helps. So I would recommend asking your doctor to try them. It can actually help confirm your diagnosis because they specifically treat nerve issues.
hazel22757 jocelynrenee
Posted
I was diagnosed with Atypical Trigeminal Neuralgia about 25 years ago. the pain I suffered from was mainly the constant dull type with periodic sharp jabs especially when exposed to cold air or wind out of doors. I took Tegretol for years and while it eased the intensity of the pain it never went away. In about 2000 I had a series of Acupuncture treatments combined with deep massage of the neck and sholder areas and the pain went away so I was able to come off the tegretol completely. I have been pain free for years so you can imagine how I am feeling now, in 2017 when the pain has returned. I have moved from the city where my acupuncturist lives and I'm not sure if he is still practicing. He was also a qualiied doctor of Chinese medicine and used various treatments so it will be almost impossible to find another doctor who will have the same skill-set. In the meantime I also find that applying gentle heat to the side of my face is helpful and eases the immediate symptoms. If you have a reliable Acupuncturist nearby it could be worth a try. I think it took about 4 or 5 sessions when I had the treatment before, but there was noticeable improvement after each session. However, since the whole side of the face tends to be very sensitive the actual treatment can also be painful.
I hope this helps.