Trigeminal Neuralgia symptoms
Posted , 3 users are following.
In 1990, my 30 year old cousin broke my jaw. I was 5. Throughout my adolescence I had ear infections, sinus infections, headaches, dizziness, poor balance (constantly falling) and SEVERE jaw pain. Doctors diagnosed me with TMJ and Sinusitis. The pain continued and eventually I was seen by a TMJ specialist who said that it wasn't bad enough to have surgery but the pain kept getting worse.
Fast forward to three years ago, the pain just stopped. No rhythm or reason, it just stopped on it's own. Then three weeks ago, the pain started again, but this time it was much much worse. On a pain scale, I was and am a 8-9, with bouts of a 10 every few hours lasting about two minutes each time (I had thought them to be spasms). I went to the ER where they said that my TMJ was acting up but there was no sign of infection/tooth issues. After much research, I have found that Trigeminal Neuralgia is more accurate to my symptoms but I have no medical insurance to have it properly diagnosed. So, that brings me to why I am at this forum, writing non-medical professionals for advice.
Here are my symptoms:
1.) SEVERE left jaw pain that lasts all day, with bouts of more severe pain lasting two minutes every couple of hours.
2.) Headache on left side of face only.
3.) Toothache, mouth pain, ear pain and dizziness.
4.) Nausea (most likely from pain).
5.) No fever, swelling or signs of infection.
6.) Pain worsens with cold/heat, pressure and sleeping on left side.
7.) Trouble sleeping with about a maximum of 2 hours of sleep per night.
8.) Exhaustion and fatigue from lack of sleep and pain.
9.) Worst pain I've ever had (I've had three children, naturally).
I could really use some advice and tips from others who are suffering from the same symptoms/possible disease.
Thank you in advance and God bless.
0 likes, 3 replies
thomas37119 jenniferrose
Posted
The broken jaw of some years ago might have still some consequences. However you need to see a neurologist for an opinion. My TN pain was lessened by Neurotin a rather inexpensive nerve drug. I have received the Gamma Knife and Cyber Knife surgery over the last 8 years recommended by Neurologist. if you have not tried Neurotin you might experiment with it.
jenniferrose thomas37119
Posted
Thomas,
Thank you so much for your reply. I have been taking Gabapentin (Neurotin) 3200mg twice a day for the last couple of years. It does help a little bit, but it's starting to become habit forming and the effects of the drug are not helping the pain much anymore. I cannot up my dosage as I am already taking a very high amount but I am hoping that an anti-seizure medication mixed with the Gabapentin will help. I have an appointment with a neurosurgeon on the 6th of January and we will find out what my options are. Due to not having insurance until then, I am unable to get the diagnosis at the moment, but I am hoping that the Neurosurgeon will be able to diagnose the issue and resolve it with medication and/or surgery.
Thank you again and God bless,
Jennifer
susan33651 jenniferrose
Posted
Hi,
Your pain experience is similar to mine especially where the nausea and all day long pain with sudden much worse pain intermittently is concerned. I have confirmed Type 1 TN affecting both sides of my face in all three branches of the nerve (a combination of 2,3,or more branches often at the same time). I take Carbamazepine, Amitriptyline and Gabapentin, plus a myriad of pain control medications during these episodes. Out of 10 I would have to say it was 15-20 or more, I have never had such horrendous pain with any other situation, including labour pain migraine, broken bones and frozen shoulder, even Autoimmune disease associated joint and muscle pain! The migraines I had before my hysterectomy were hormone related and nothing like the ones with this TN/ migraine condition!
I did a great deal of research and found an article by someone (S Levin or Lewin) which presented a case study with a proposal to classify a new type of headache / TN type. This is an absolutely perfect match for my experience. The headache / TN type is Tic Migraine syndrome. Essentially it is a neurological condition in which a known TN sufferer experiences a migraine during, or more often, some time (a couple of hours in my case) after a TN attack.
In my experience the migraine would then trigger more TN lasting anywhere from a few days to a week or so. The recommendation is for Gabapentin to be added to the anticonvulsant therapy. It has made a big difference to me.
You should be referred to a neurologist who is prepared to listen to your symptoms. I downloaded the article to my phone and showed my GP. He was happy to follow the recommendations in the article. He is a fantastic GP and better than my current neurologist.
Research as much as you can and be prepared to stand your ground!
Good luck 🤞