How I survived, researched, and overcame Trigeminal Neuralgia
Posted , 131 users are following.
I'm going to tell my story so it will be kind of long, but has a great end ing..promise;-). In 2011, at age 29, I noticed a sharp pain when I brushed my teeth. At the time, like many others, I assumed it was dental related. I went to the dentist and they found nothing wrong. As the weeks went on, the pain started happening when I talked, brushed, washed my face, clenched my teeth, slept, smiled, if the wind blew hard, etc. It was the WORST pain of my life. It felt like an electric shock going off in my the left side of my face by my jaw. Sometimes the pain would be just a quick stab, and other times the pain would vibrate through my face and all I could do was stop all motion and wait until it passed. I would even wake up out of my sleep sometimes from the pain if I accidentally turned on my left side. The pain would last for weeks then go away for a week and I thought it was over. BIG MISTAKE! It came back with a vengeance.
After many painful days and nights, I started looking up my symptoms on the internet (yeah for Google) and the same diagnosis kept coming up..Trigeminal Neuralgia. I was confused because although my symptoms matched, it said that this disease usually showed itself in older individuals and I was only 29. I made an appointment with my physician and after cruelly poking my facing with his finger after I told him my symptoms, he confirmed that although it was rare for my age, I had TN. He prescribed me a steroid prescription and sent me on my way. No further explanation. If I had not already researched this, I would have been lost. So I took the pills, and besides making me gain a couple pounds, the pain remained. By now, I had researched so much about TN, I felt like an expert. I called my physician and asked to be referred to a Neurologist.
Long story short on this part, Before the Neurologist saw me , he sent me to get MRI which was clean so no MS and he spent all of three minutes seeing me, told me I had TN, gave me a prescription for TEGRETOL, and sent me on my way. No further explanation about my disease. He failed to tell me that the Tegretol would make me CRAZY!!!!!!!!! I am a teacher and the Tegretol had me so nuts, some days I couldn't even function. I have a 2 1/2 yr old and between the Tegretol and pain, I'm sure I was a pain for my child.
The Tegretol did help a little but I could not see myself having to live the rest of my life on Tegretol. It would have been HELL!!! I had already researched Gamma Ray treatment and surgery to cut skull open and put something in between nerve and blood vessel. Both did not appeal to me.
THIS IS WHEN IT GETS GOOD!!! I live in Alabama (US) and one day when I was researching, I saw that a Neurosurgeon in Birmingham, AL, Dr. Swaid N. Swaid does something called CYBERKNIFE TREATMENT. CYBERKNIFE is a non invasive radio surgery that is used to treat everything from cancerous and non cancerous tumors and TRIGEMINAL NEURALGIA!!! It beams a high dose of radiation to the area that precisely goes to the spot needed. I felt like this was my only hope. I called to make an appointment and luckily, a referral was not needed since my Dr. and Neurologist were of no help. I went to see Dr. Swaid the next month and he was the first Dr. to sit down and explain exactly what I had and the treatment options. Because of my age, he thought the brain surgery was better but I told him that I would rather do the Cyberknife. The brain surgery, besides be invasive, would make me have to take 2-3 weeks to recuperate while Cyberknife, I would go into treatment 1-5 times, depending on my xray of my nerves and lay on the table for 45 minutes and left the robot do it's thing and get up and be just fine. No pain, no cutting!
Made my appointment for Cyberknife, went in to talk to Radiologist who told me Cyberknife was just as good as the invasive method. He actually drew me a picture to describe what was going on in my face and told me that I was suffering from Trigeminal Neuralgia in my 3rd trigeminal nerve (the one by the lower jawline). After they looked at my
Xray, they decided I only needed one treatment. They made a mold of my face that is like a net they had to put on my face to keep me prefectly still. I laid on the table, listened to the music of my choice, and listened to the robotic arm buzz over my face for @ 40 minutes. Got up and was on my way. I was warned that the results would not be
immediate. The radiation slowly kills the nerve that is being affected. But month after month, sure enough, the pain became less and less. I went to see Dr. Swaid every 3 month for the next 9 months. He said by the 6th month, if the pain was gone, most likely it would be gone forever. The only side effect I have is that sometimes when I chew on that side of my face, because the nerve was killed, I get a little painless tightening in my jaw (like lock jaw) for a few seconds. I laugh because I'll take that anyday over TN and it only happens usually when I chew something really tough on that side
I have been pain free for about a year now but I'll never forget the worst part of my life. I encourage anyone dealing with TN TO DO YOUR RESEARCH and do what is best for you. If you have a Hospital that offers Cyberknife in your area, I encourage you to look into it. Never give up hope that you can't overcome this and know that there are others that have had to deal with this too....You DO NOT have to settle for taking medication for this disease for the rest of your life! RESEARCH, RESEARCH RESEARCH. God Bless!!!
26 likes, 244 replies
jose47794 IsurvivedTN
Posted
Basically they just said probably you have this here is this pill drink and wait 19 weeks to be referred to a neurology.
So imagine you have your family to support with two little kids and you have a sick note for 3 months.
Anyway I just wondered if the NHS will provide you help and right treatment so you could stop using the anwfull pill.
Like Gamma Knife or The MVD to get your life back.
Thanks to all people who makes this chat a good help.
marianne73585 jose47794
Posted
Hi Josie, I live in the UK and I have had this problem for 5 years. The NHS cannot afford to provide help, so I have found out. I have been to see a consultant at my local hospital and he didn't want to know. He said that Gamma Knife might cause death. All the NHS want you to do is to keep taking the pills and as soon as you have been taking the maxiumum and if you are still having the pain, then they might do something. I have stopped taking the pills 4 times a day because the pain has gone down really low all by itself. I am wondering if my pain was caused by tension and worry. Sometimes I get a jab of pain from one tooth when I am having my meals, but I just eat on the other side of my mouth and the pain subsides and then I forget the pain is there and eat normally and the pain subsides. I also changed the way I cleaned my teeth and now the pain is no longer there. I started to clean my teeth from the other side first and when it got to the left side where the pain is, I go gently and now I don't have any pain at all. Sometimes during the day, like now, for instance, I have slight pain and all I do is clench my top and bottom teeth together on my left hand side and it goes away. Most of the time I don't have any pain at all and so I have taken my pills back to the pharmacy and informed my doctor and she has said that she will take me off the repeat prescription. I find doctors most unhelpful when it comes to any problem. They have no idea what Trigeminal Neuralgia is. When I first got the problem, I had to tell my doctor what I had discovered on my research and the doctor then just agreed with me, before that my doctor didn't know what it was.
veronica35258 marianne73585
Posted
Hi marianne73585
4 years later, how are you now on your TN?
Thanks!!
marlene36342 IsurvivedTN
Posted
surgeons, I had MVD surgery. Unfortunately, the surgery was not successful. I also went for several nerve blocks and botox injections. No success at all. I understand that research is very important. I took this to the maximum level with no relief. I am so happy for you and that you are now living pain free days. unfortunately, I just happen to be one of many that there is no answer for total pain relief. Cyberknife was also a treatment that i was well aware of - but was informed by my surgeon that this procedure would be of no hope for me. i am, unfortunately, will be on pain meds for the rest of my days.
carol33247 marlene36342
Posted
brock1998 IsurvivedTN
Posted
Not sure if you will get this but it's worth a try. Are you still pain free after all these years?
Thanks Brock
carol33247 IsurvivedTN
Posted
missy011 IsurvivedTN
Posted
In Oct. 2015, I underwent Cyberknife surgery for TN. The procedure was sanctioned by Dr. Swaid Swaid at Brookwood Med. Ctr. in B'ham, AL. Consequently, my outcome was not as great as yours. After about 5 months of no pain, I started having numbness on the affective side that eventually resulted in pain in lower jaw, upper jaw, tongue, eye. Also, other sensations such as congestion of nasal passage, swelling of jaw, sharp jarring pain to back of eye, along with burning & tingling sensation on the affective side of face & drooling. First, I was informed it was only temporary, then told nothing could be done other than being place on medication (Lyrica) to help with the pain. The pain I'm experincing now seems far worse than the oringal TN. This pain never stops! The Lyrica helps reduce the pain but all the other sensations described are still there. So, in response to your post "DO NOT settle for taking medication for this disease the rest of your life!" may not be true. I will be on medication the rest of my life because what I'm now left with is Anesthesia Dolorosa. And, I pray that the medication help aleiviate some of the pain. Presently, I'm going for pain management. I feel I'm beoming immune to the Lyrica and praying there is another medicine that will be equal or better for pain relief. Hope you are still doing well!
Sasha8101 missy011
Posted
Thanks, missy, for your candid post. You're not the only one who has suffered the awful dolorosa condition as a result of gamma knife treatment. A woman on the MS site says she would have carried on with the drugs if she had known what she knows now.
I'm debating having gamma knife at the moment and I'm increasingly aware that it isn't necessarily the panacea that many hold it out to be. The facial numbness after effect seriously worries me.
I do hope you find some solution to everything. I really feel for you.
Best wishes
Sasha
michael41261 missy011
Posted
I have had the same experience as you have had. I also used Swaid and although the relief from the Cyber Knife came after nine months, it did work. But after five months of no pain, it has come back again. So now I am back on heavy doses of Trileptal and the only thing it seems to do is make me a zombie as the pain remains. So now I am looking for yet another neurologist. Over ten years with TN now.
Sassy65340 IsurvivedTN
Posted
shaughnna IsurvivedTN
Posted
Love your story. Do you know if this gamma knife is effective with Atypical trigemina neuralgia..
Thank you
Shaughnn
shaughnna
Posted
Shaughnna
lyn1269 IsurvivedTN
Posted
How are you doing now? Have you had any return of your symptoms? Wasn't your Cyberknife 4 years ago now? I am considering it as I can no longer deal with the medications, they make me so dopey. 😡 Did heat ever bother you or exacerbate your symptoms? Thank you for sharing your story.
kim85998 IsurvivedTN
Posted
marianne73585 kim85998
Posted
kim85998 marianne73585
Posted
Hi Marianne,
?I have joined this discussion because I am truly convinced I have TN. I am currently in the process of getting an appointment with a neurologist. My story started in 2014. I thought I had a bad tooth. It was not my teeth. I started having stabbing pains in my eye, my tongue burned very badly, my lips on the left side of my mouth were numb, and my teeth were throbbing on the left side of my mouth. So, I went to my pcp he didn't know what was going on so he put me on Norco, so that's were I am at. But I am having break through pain even being on the Norco. So now I am seeking a neurologist. I am sure what he is going to say. It is either TN or MS. So I was researching TN and my searching brought me to this very informative site. I am glad I found this site, like everyone else it never hurts to have support. I will keep everyone informed what I find out after I see the neurologist. Thank you for acknowledging me. I wonder has anyone heard from Isurvived how she is doing?
marianne73585 kim85998
Posted
Hi Kim
I had TN as well. Like you it started with one tooth hurting and I thought I needed a dentist. It took me 3 years to realise that I needed a doctor and not a dentist. It appears you have TN worse than I did. I didn't get stabbing pains in my eye or my tongue. I did get pain on my lips when I touched them. TN has subsided a lot and I have seen a neurologist at my local hospital, but he was useless and expected me to go there in the pain to see me having an "episode" of pain, but the pain for me was too much to bear for me to come off the pills just so that he could see what it was like. I have stopped taking the pills because I feel annoyed that I have this problem and for some reason most of the pain has stopped, but I still get pain on the left side of my mouth and as I'm writing this, the left side of my mouth is a bit painful, but bearable. I never heard from Isurvived. I commented to that person, but I didn't get any reply. I searched for information for my condition and that led to this site, just as it did for you. It was the googling of my condition that led me to my doctor, because the doctor didn't know, I had to tell my doctor what I had and then she agreed and put me on pills 4 times a day, but it still didn't stop the pain enough when I had something to eat, so I asked her to give me more, so then they increased the amount for me, but I had to start of different and I forgot how to take the pills and did it wrong which made me dizzy and I was falling into my daughter's dinner plate as I stood up for something. I was then falling into the walls, so I stopped taking the pills and for some reason, the pain has subsided much, much better and for some reason I can eat my meals, clean my teeth and watch telly without any pain, only very mildly sometimes I feel the pain. I've only ever had the pain in the left hand side of my teeth and also at the beginning, I was unable to touch my left hand side face to clean my face, but now all that has gone as well. I am unable to explain how my pain has gone for most of the time. I didn't have surgery like everyone else. At the moment, the pain has now left me, but it will be back a bit, but I am able to cope with it.