How DID your TN (Trigeminal Neuralgia) condition "manifested for you?"

Brain and nerves
1

Hi Everyone,

 

I was wondering “IF ANYONE” cares to share ANYTHING about their experience or symptoms of TN ""IN HERE"".

WOULD YOU MIND, SHARING WITH US THINGS (LIKE):

How did it start for you?”

Which were your first symptoms before it all started, and in what part Trigeminal Nerve area??

What steps did you go through, to finally establish “that it was TN?”

What methods, procedures, or medications are you currently taking to help you deal with it?

What seems to trigger your symptoms the most?

How old were you when you first started to feel these TN symptoms, and for how long have you felt them until now??

I DO APOLOGIZE FOR ALL THESE SILLY QUESTIONS, but. There are too many new faces in the world of TN, in which I must include myself, “who would love to hear” how did all get started for you, what have you done to deal with it, and how has it been dealing with it, as far as living your everyday life, since it all started for you??.

I feel this would give us a better understanding, to all of us TN newbie’s.

Having as many responses at once, “ALL IN A SINGLE QUESTION” without having to read here and read there, to find out what has been asked and what has been said about TN.

I WOULD APPRECIATE IT VERY MUCH, if you kind folks can take a brief moment of your valuable time, to share your TN experience “HERE” with all of us.

I feel it would help us gather as much input and information (all at once), all in a single question, or compiled together, to help alleviate, and eliminate some the dreaded confusion about searching here and there to inform our selves about your experiences with TN.

I WANT TO THANK YOU SO MUCH, FOR TAKING YOUR PRECIOUS TIME TO SHARE A LITTLE MORE WITH AL OF US….   THANK YOU!

2

Hi Tony. 

Looking back I realise it had been 'niggling' for a couple of years. 

I experienced ear and jaw ache.  My throat on the side that got TG eventually felt sore too.  when I did have an attack it was on my left side in my ear, upper and lower jaw bone, eye socket and over my head, all on the left side. Even the left side of my nose and mouth. 

I take Tegretol to keep it at bay.  I have not had an attack since Feb. 15. Attending the dentist seems to trigger it. 

I had blood tests, and a CT scan. I was 67 when I had my first attack.  I will be 68 in a couple of months. 

I hope this helps. 

3

Hi Tony,

I think this is a good idea and no way is it silly.

It first started for me with a stinging, tingling feeling on the right side of my tongue. Then I got the stinging electric shocks through my teeth on the right side of my face. Occasionally I had pain in my eye and right temple.

I wasn't told which part of the Trigeminal nerve it was.

I first went to my GP who diagnosed TN but at first was sure it could also be dental related. So I went to the dentist who ruled out any dental problems. My GP wasn't convinced it was TN and my dentist was convinced it wasn't dental. In the end my GP relented.

I also had an MRI scan which showed unremarkable.

Im presently taking Pregabalin 250mg a day. Occasionally the pain will try and break through so it was suggested to increase my dosage to 150mg twice a day. I didn't take it. The pain subsided so I'm still on 125mg twice a day.

What always triggers my pain at first diagnosis was the eating, talking and occasionally brushing my teeth.

I was in my mid forties when I first experienced the pain. I've had this condition now for over twenty years. When I had a six yr break I thought that was it. No such luck. When my TN returned I was automatically put on Tegretol but it didn't work this time around. I was tried on other meds but they too didn't work. This went on for two months whilst still in pain. Now I'm taking Pregabalin and so far no problems.

The pattern for me over the last twenty years plus, was nine months on and nine months remission. But after the six yr break this has not been the case. I've had the TN for eleven months now and there's no sign of it letting up.

Very disappointing.

Kind regards

Gloriana

 

4

Hello Tony, I think it's a great idea to simply ask other people with TN to tell of their experiences.  

I've been suffering with this condition for about 20 years, although didn't know it until 7 years ago.  My Dr told me it was bad migraine and I beleived them.  

I was diagnosed with having MS 7 years ago.  I have lots of odd symptoms and pretty bad pain too.  However, the pain from the TN is worse as you cannot seem to escape from it when it's in your head and face.  I was convinced I had a bad tooth but it wasn't that, then the pain was so intense that I ended up sobbing into a pillow.  My daughter inssisted on calling the doctor and they said it was TN.  I was given Tramadol and Carbomazipine(cannot spell it) These were a temporary mesure.

I take Pregabalin.  300mg twice daily.  I also have Co Dydramol which I use to help the eye pain.  The pain is still pretty bad but bearable.  I find it starts for just no reason at all.  There doesn't seem to be any logic to it.  I've even woken up with it.  It usually starts in the temples and works it 's way down and accross one side of the head and face.  I can get it on either side.

My physio has reccomended some Acupuncture.  So, I'll be letting you know about that when I  have had some done.  

I hope this has helped someone.  I know how hard it can be to deal with such severe pain. 

Take Care All Netz

  

5

Hello Tony

I'm a relative newcomer to TN and my story goes like this:

1. Sudden excruciating pain felt across the left side of my jaw, starting from around the jaw hinge and running along the area of the lower jaw bone - pain the like of which I'd never experienced before!

2. Saw my GP who suspected arthritis of the joint and suggested I took ibuprofen.

3. The pain would come and go, bearing little resemblance to arthritic pain, so I made an appointment to see my dentist. He x-rayed the jaws and carried out his own examination. He concluded that my jaw showed no signs of arthritis but I was presenting with some form of nerve disorder.

4. I returned to see my GP who decided that I ought to see a neurologist just to clarify things and as the pain was getting more unbearable, I paid for a private consultation.

5. After thorough investigation, he said, 'Dentist right, GP wrong! You have all the classic symptoms of TN but there is a drug available to help you. Go and see your GP and get a prescription for Tegretol.

So, that's how it all started! That was 2 years ago and the drug is still very effective. Sometimes I need to increase the dose but I have it under contol.

Hope this helps, my friend. Colin 

6

Q). How did it start for you? 

A). I remember having earache-like pain a lot of the time while I was in school around 7 years ago I'd say, and have had them ever since.

Q). Which were your first symptoms before it all started, and in what part Trigeminal Nerve area?

A). The symptoms I had were an aching (sometimes dull, sometimes very painful) feeling in and around my ear. This sometimes felt like burning and stabbing almost every day.

Q). What steps did you go through, to finally establish “that it was TN?”

A). Throughout school I remember going to see a doctor countless amounts of time about this. One time, the doctor suggested that it was just an ear infection and gave me antibiotics. These did not help with the pain so the doctors basically just said "ignore it, it will go away eventually". 

I gave it around 2 years I believe, after I had left school and gone to college as the periods of remission were long so sometimes I had believed that it had gone away. It had still not gotten any better so I visited yet another doctor who then referred me to an ENT specialist in my area. When visiting this specialist, all they did was take a look in my ear and a hearing and pressure test, and said that all seemed fine and that I should ignore it still. 

After I had finished college it still hadn't gone away, so before leaving my home to go to university I asked my doctor to refer me to another ENT specialist in the same county as my university, after I had been checked out by a dentist just in case (no problems there). Upon seeing the specialist, they had a look around up my nose etc. with a camera (not nice) and said all seemed well. According to my symptoms she suggested neuralgia and an MRI to check if it was Acoustic Neuroma. The scan came back unremarkable and she diagnosed me with neuralgia. (no one ever said what type, though after researching I feel as though it may be TN type 2). 

Q). What methods, procedures, or medications are you currently taking to help you deal with it?

A). Currently I am taking Amitriptyline which helped with the pain for around 3 months, I am still on it only because I began to rely on it to sleep, and since my exams are coming up I didn’t want to risk not being able to sleep.

The main medication I have just recently started is Gabapentin (Neurontin).

Q). What seems to trigger your symptoms the most?

A). I can’t say I know what triggers it. Sometimes going outside triggers it, but then sometimes that doesn’t. Sometimes washing my hair around my ear triggers it, but again sometimes that doesn’t either. It seems to be triggered by anything.

Q). How old were you when you first started to feel these TN symptoms, and for how long have you felt them until now?

A)    I think I started feeling the pain around 6-7 years ago, when I was 12-13 years old (I am currently 19), and painkillers never worked so it was very frustrating. I have had it ever since, though the medication seems to be working for me right now. 

Hopefully this will be helpful, and I wish you all well. smile

7

Hi. My experience is similar to yours. Only thing mine got worse n tabs increased! To cut a long story short,I had frquent stomach bleeds and had to be rushed to the hosp! Fed up of it all and was at the end of my thether. Do when an op was suggested to me, I gladly agreed. Had the op in 2009 and am fine now. It has affectedmy hearing a bit n numb jaw on rt side but I can live with that!

8

I tried accupunture too and it workd only for few months!

9

Tony,

I think my grandmother and mother both suffered from TN, but did not know it.  Both had all their teeth removed and ended up with dentures.  My grandmother suffered from pains in her head.  My mother also had headaches.

I believe my TN started much earlier then when it was diagnosed in year2000.  When I was in my twenties I had a bout of Horton's cephaligia which was an incredible pain in my left eye.  It lasted about a week during which I took strong medication that kept me asleep.

In my 40s I was diagnosed with Bell's Palsy when the left side of my face went numb and sagged.  It lasted 3 months and then went away.

During my 50s I had trouble with my teeth.  I had two teeth pulled because I could not stand the pain and demanded it.  When the pain returned in my late 50s I went to several dentists until one said he thought I had trigeminal neuralgia. 

I saw a neurologist and was put on tegretol.  It started at 200mg.  Over a 7 year span the tegretol was increased gradually because of breakthrough pain.  At the end of that 7 year span I was sent to an urologist because of a chronic condition of low sodium and potasium.  I could no longer take tegretol as it was becoming toxic in my system (1200mg).

Other drugs were tried at the time but it seemed that nothing would control the pain.  I spent a hell year in and out of the hospital and rehabilitation centers when finally I saw a neurosurgeon whom I asked to do microvascular decompression surgery. 

I had the MVD and it was effective for 5 years.  I had a second MVD which was effective for one year.  I have been told I cannot have any more MVDs.

I am currently taking Lytica (450mg daily) but am having breakthrough pain.  My neurologist has told me to increase the Lyrica to 600mg.

I have not opted for any other procedure because they are based upon damaging the trigeminal nerve.  But if the Lyrica stops being effective I will have to consider one of these procedures.  

Recently, I have written I letter to a neurosurgeon who is conducting research in myelin repair.

10

Hi,

Sorry you had to go through such an ordeal but pleased your ok now.

Which operation did you have?

11

Hi Tony & everyone else. I am 33 yr old female. I have recently been diagnosed with TN after 2 weeks of agony- my pain seems to be on 3 branches of the nerver on my right side, temple, cheek & jaw/teeth and several dentist appointments my GP made the diagnosis. Currently I am taking 75mg amytriplin at night & 900mg gabapentin spaced out over the day.

the pain seemed to go away when I first started the gabapentin last week but yesterday it came back with a vengance ! I took 1200mg gabapentin yetsreday but I am still in agony today !

I feel so isolated ! i am sure my boyfriend is fed up with me complaining that I am in pain. Is there other meds that I could take to help the pain ?

also, I am Type 1 diabetic, but my gp does not think its related.

Thanks guys

12

Hi. I was just diagnosed with TN this Saturday. I am still so suprised that this is actually a thing. I had never heard of such a thing. My dr put me on a antidepressant and since then the pain has changed. It has become constant and focused in a couple of my teeth and it is almost impossible for me to eat. Has anyone else experienced this? Whenever I read about TN it says the pain comes and goes which mine did at first but is would stay for about 20 minutes and then leave for twenty minutes before returning. Now it is duller but constant. Could I have been misdiagnosed? During the intermittent pain all I could do was sit and hold my face and whimper. I even found myself drooling because I couldn't even swollow. I am only 28.

13

You will find alot of stories here about TN.  You will find there are two types of TN.  One in which the pain is a dull constant, the other when excruciating pain bursts happen.  A good place to learn about TN and what research is being done is at the Facial Pain Association.  I am sorry you are experiencing TN.  One thing:  It is not your teeth.  It is a nerve.  Some people have had teeth pull in an effort to alleviate the pain.  But that is not the answert.  There are drugs and treatments.  Good luck.

14

Thank you so much for responding! It is a scary thing but I am glad to have found a place where so many people share a similar affliction. Thanks again for the support.

15

Make sure you do your research so you can speak knowledgeably with your neurologist.  Tegretol is the premier drug for TN and has been for years.  There are other drugs that are used when Tegretol is not an option.  In terms of treatments there are surgical treatments and nonsurgical treatments.  Some treatments actually damages the trigeminal nerve in an effort to stop the pain.  These would be a last effort option. Microvascular decompression with craniotomy is a procedure that has had complete relief for some people, others not so much, but it has about an 85% success rate.  Good luck.  Be well.

16

Thank you! I am hoping to get in to see the nurologist this week. I will feel better if they can rule out MS and a brain tumor. Then it will just be pain management. I have a chiropractor friend who checked me last night and found some issues in my neck and we are hoping to relieve some pressue that way in the meantime. I will continue to update as changes are made in hopes my experiences can help someone else. I was sad to find out about such a horrible disease that is so unheard of and unrecognized. Good luck to all.

17

I'll be sending you good vibes!

18

It was called microvascular decompression. It involved putting a piece of sponge between the trigeminal nerve and an artery!!

19

Not silly at all!  I was diagnosed September 2013. It started with nerve tingling around the left side of my mouth and started getting bad sharp pains in my mouth. I went to my dentist thinking I may need a root canal??? He did xrays and said everything was fine with my teeth but he had just read an article about TN and said it sounded like what I was feeling. I had made an appointment to see my Dr. but the HORRIBLE sharp pain just continued to increase. It moved from my ear shooting through my cheek I ended up in urgent care. The Dr there did some tests and agreed with my dentist, but could not prescribe the medicine needed. The next morning I got into my Dr and was so miserable my husband had to come with me. I couldn't talk, eat or drink. The pain was unbearable!!!! She prescribed me tegretol. It finally got better after a week or so, all I could do is lay down and try to sleep. I had read that in rare cases it could be caused by a brain tumor but in my folow up appt. my Dr said she thought a MRI was not nessesary and believed it would never come back. February 2014 came along...one evening the tingling started again. Morning came..It started bad again, I started medicine, it was another week or so of HORRIBLE pain. I demanded an MRI at that time. MRI..next morning I found out I had a brain tumor that was intertwined in the nerves. Had It removed at Mayo Clinic last April and I am pain free! If you haven't  GET a MRI!  I was 55 yrs old   Good Luck...stay strong

20

I have a serious automobile accident on December 9, 2016 my car flipped over. I have a small plastic cooler in the passenger seat and landed on my head on the side of my temple to be exact . Two days later I developed a twitch in my head felt unreal and It build up over time my neurologist said that could've been the cause of my TN I had a MRI and my MRI was stable and because I have multiple sclerosis that is a common predecessor to TN but on my case it was definitely from the car accident it has magnified to at least seven or eight times a day The pain has been horrible I do take take Tegretol, however I easily build up tolerance to it I'm hoping I can get surgery for it because I can't imagine having us or 20 years like some people say that they do there's no way there's no way I could do that Now the pain feels like a wisdom tooth that I know longer have hurts and I get this hot poker in my cheek under My eye it moves around. I can no longer eat my favorite Mexican food until I get a cure for this dreaded disease any questions free to email me thank you,Camille