Hey,
so unfortunately my first post isn’t going to be the most positive in the world, infact im very very negative about this whole thing thats happening to me.
Im 26, usually very active and hard working. Ive always been the type of person who loves a clean home and organised life. i enjoy running as a hobby, excercise. Im usually a very social person. Always out for a drink or food. i love travelling too. im a very happy and easy to like person. Occasionally id have the odd blip, which always involved my ex, where by id get upset and down on life… but in all? I was happy.
And my life has been ruined at the snap of a finger.
Or should i say sudden electric shock that set me bolt upright whilst sleeping in the middle of the night!
It wouldnt stop for days. id get these attacks repeatedly… then have the odd sudden hour with nothing?! Nothing but puffy eyes from crying to show for all the agony… then again, it’ll return. im sure you’re all aware of the cycle…
So my visit to a&e proved pointless. I was sent home with morphine which i thought would save me, of course i had no idea that opide medication is ineffective on TN at that point.
I had many visits to out of hours doctors all of which said there is NOTHING they can do. i had the strongest medication available.
Upon reflection i know it was weekend nights which are very busy. No one wanted to deal with me or explain anything to me! … im a nurse my self and i know how important beds are in a hospital. They dont wanna give over night pain control to an able 26 year old… i was pretty much ignored.
I must say, this is the most agonising pain i have ever felt in my life. Is rather give birth every day or have a tooth abcess! Id rather break my pelvis… i dont know. Just anything over than this. It makes me pray to a god i dont believe in. It makes me beg for death! I can not handle another attack…
After reading through alot of posts i have to say i feel my life has ended. i dont want to fight this.
So my actual Gp diagnosed TN which was a slight relief but also … depressing. The drugs i have been given have worked on the sudden attacks but i can still feel the right side of my face twisting and burning. Im fully aware of the attacks still coming but the suddenness is gone?
Im on 600mg Gabapentin, 600mg Carbamazepine, and just incase its something to do with shingles (which ive never had, so i dont understand this one) 4000mg Aciclovir? Its alot… 800mg x 5 times… ekk
I also have Oralmorph that i can take upto 20mgs a day of but im staying clear of it. I know it dosent help much now and its not good for you.
Ive also been give Zopiclone 7.5mg each night.
.and its all messing me up!
I keep forgetting things, im always falling asleep, my body aches, im so tierd and dizzy, confusion all of which are obvious side effects from all these nasty drugs
… on top of this ? i have a chest infection and a broken foot!
I could almost laugh but that would mean im crazy…
Anyway, the point of my post is to ask when will this get better? When will i adjust? Or am i going to feel like this for ever?
I havent ate for almost a week because i feel constantly sick. Its obvious im very down and im so sorry to feel like a drag but i need to see a light.
I’m 33 and I’ve had this about ten years. I’ve had mvd surgery. I take glycerin shots in my face every few months I’ve done tons of medications. I’ve been there and next week I’m doing the rhizotomy shit. It never ends and got worse for me. I just look for relief now. The shots keep me pretty much pain free. I do get small zaps but it ain’t shit compared to what I get. And I can handle pretty much anything now tn has made me handle pain. Ha ha. Just find the right doctors which can be tough and people will be assholes and not care about you but just tough through it… and you have us. Hang in there. You will be a much stronger person along the way!.. good luck. I’m here to chat if you need!
I’m so sorry to hear about all the challenges you’re facing right now. I am also a relative newbie (less than a year since this started) and I can’t offer the benefit of years of dealing with this. But from where I stand I can offer a glimmer of hope. Life gets better. this doesn’t stay in crisis mode long term. There are times that are harder and times that are easier. Sometimes I can forget I have this crazy condition altogether. It’s definitely NOT a life of constant intense unbearable pain like you have now. And you will find the drugs that work to control your pain without totally knocking you out. I don’t like the side effects of my meds, but I can live with them. Keep holding on to hope and know that you can still enjoy life. You will eat again, you’ll run (when your foot heals and that chest infection clears up!) and travel and work and go for drinks(possibly non alcoholic ones…) and organize your house and laugh and do all the things that bring meaning and pleasure to your life.
I wish you health and many pain free days!
Thats it… im terrified of it getting worst before it gets better. My last attack turned me into a mad woman. I couldnt even cry or talk as it made it worst. I literally wanted to die.
How soon do Doctors tend to offer these other treatment options? In your case atleast?
Ive been referred to a Neurologist and its obvious im not gonna get surgery on our first visit…but im hopeful that if i probe and beg it can be hurried up or something…
Ive always been tolerant of pain. Ive taken things so well and people have called me mad… but this is something else. I wouldnt wish it on my worst enemy
These shit drugs make me shit at my job… and i need to work so bad…
Thanks for your reply… Xx
Perhaps its because im in such a sad place right now but your reply made me cry.
Cry with relief. i really needed to hear those things.
Right now im adjusting and im constantly in fear, in crisis mode as you put it.
I need something to clinge to and youve definitely gave me that.
Thank you so much
Hi I too have only recently been diagnosed and I do understand how you are feeling. I ha e tried many different drugs because I have other underlying neurological problems. However TN is by far the worst pain I’ve ever experienced. I tried Gabapentim along with Carbamazepine and Amitriptyline but within 48 hours of taking Gabapentim I was suicidal. I went back to see my gp and he took me straight off the Gabapentim it and said it was a side effect. I had it with Lyrica too so I’m limited to what I can take to help with my TN. I saw a neurosurgeon a couple of months ago and the diagnosis was confirmed. I’ve recently had an MRI scan and go back for the results in a few weeks time. Surgery was mentioned at my first appointment which surprised me. TN really is the worst pain ever and I find people that haven’t experienced it can’t really understand how it affects every part of your life. Reading through other people’s stories has kept me going. Just knowing that I’m not going crazy and that others have found relief has really helped me so much. Even if it’s just a glimmer of hope try and keep it in sight. Take care x
Forgot to say take care when taking Zopiclone. I had it for a while and ended up having several really bad falls in the night and found I was becoming addicted to them. I’ve since been weaned off them and feel a lot better for it. Do you find the pain eases when you manage to sleep?
Sorry to hear you have TN. I have had it for 11 years. I have been on & off of Tegretol for years, from 100mg up to 1000mg per day, where I suffered Lupus, did not want to mix medications & found others effected me too much.
After a while I could function on Tegretol and still work.
I discovered that heat packs were very helpful.
I also found that sometimes sleeping on one side of my face could set off attacks, and at other times, if I opened my mouth wide, that I could stop the pain… I read about the Trigeminal nerves & learnt lots of coping strategies…
The first seven years I only got attacks for about 7 months of each year, being the colder months, Autumn & Winter.
Then I discovered a post on this site about Vitamin B12, which builds up nerve sheaths. Because the physical side of TN is a blood vessel rubbing a nerve, I took daily doses of 1000mcg of B12 for several years, now only take it a couple of times a week & have been in remission for 10 months this time. Hoping it will continue… My neurologist told me I was good at mentally blocking out pain by keeping very busy & concentrating on other things.
I wish you lots of pain free remission times, that you can also find things that work for you and help you cope. xxx Gail
I think I was the one who talked about V- B12. I went into remission some 11 years ago and have only had one or two minor flareups since. I believe that the B12 I take has helped keep me in remission. I take, daily, 5000mcg, sublingually (under the tongue) which gets the B12 right into the bloodstream and avoids the digestive system with the stomach acid. I might add, that I am a Support Group Leader for TN and Facial Pain in the Sacramento, Ca. area. I have found three other members of my group that are also in remission and take V-B12. Coincidence? Maybe but I sure believe it is helping.
Wonderful Allan. I know it is the B12 that has helped me and if I get any twinges, I take more. Great to hear you have been in remission so long…
I have had other nerve issues and the B12 has helped them also… My doctor checks the levels by a blood test every couple of years…
Mine is also taken sublingually and this way can actually help stop twinges or lessen pain when it comes.
I believe some people have a B12 injection from their doctor to start off with a good amount when their B12 was very low, as taking it the way we do is a slow process, but it works. that is the main thing… no medication.
I also now take Tumeric Root, which I grow at home. Just keep it in the freezer and grate half an inch on food daily. This is a wonderful anti-inflammatory, as good as Frankincense and I am sure this also helps.
Ii’s important to know that Tumeric like Glucosamine and Omega-3 Fish Oil is a blood thinner, so anyone on medication blood thinners will need to discuss this with their doctor, before using it…
I’m so sorry for your pain. I had a bout of strange TN like symptoms last September 2015, I believe a result of wisdom teeth extractions. I was never diagnosed with TN but the electrical jolt shocking pain in my right jaw was certainly indicative of TN and just as excruciating. Pain volleyed for about 20 mins. at a time, 5-7 times a night, but only at night and never when I was sleeping and never during the day so I was able to work and be functional. It was very strange. I didn’t have the sensitivity typical of TN, I could brush my teeth, wash my face etc. I could only sit with an icepack to my jaw and cry when the pain came on til the pain went away.
I was fortunate enough where the pain completely disappeared after 10 days. I had cervical and back adjustments from a chiropractor, laser treatment to my jaw where it was most painful and have been taking Turmeric and B12 as a regimen. I have significantly limited my caffeine intake to two cups only on weekends, decaf only. I pray to God that I never experience that pain again. I pray that you will find the right doctor who will provide you with the proper meds so that you will finally be pain free. Please don’t lose hope.
Reading your post sounds so much like me. I have to have a organized house, like loved running and gardening for a hobby, and I have a very on the go lifestyle. I did t just have a massive pain attack. My jaw was aching and the back of my head felt like someone hit me with a baseball bat. So I was already seeing a doctor for that pain. My first big attack was the week of thanksgiving. Both parents were in the hospital (I am their care partner) my kids had their teacher conferences and I was getting ready to have thanksgiving. To relieve some stress I went to the bar with my girlfriends. It was at the bar I suddenly went down in sharp horrible pain. I stayed with me for three days. Scared me, weaken me, slowed me down. That’s when my doc started looking into TN. I was finally diagnosed this spring. My dad has MS so I had to be checked for that. Came out clear, but the. I was faced with this pain that can come at anytime. I was mad, sad, and I didn’t want to face a future facing this pain every day. It’s fall now and had a summer of trying certain meds till I figured out a combination that works for me. My days have gotten better. I have days I feel like my old self. I still have my bad days of feeling sorry for myself but then I get swept up in the daily business of living my life. Cry when you need to. Then keep moving. We are here for you bad days❤️
Kelly yes, great response. And to this new member, my deepest condolences but now on it’s all about getting comfortable.
Make an appointment with a neurologist who states treating TN and Migraibes mostly. Best beginning. Try for a regional med center doc or University too.
I havent posted on here in a while but my heart broke reading your message in my living with facial pain summary email so I felt compelled to log in and write to you. I have had atypical TN for 4 years. I felt the same as you that my happy little life was over and I didnt think I could deal with this when so many others before me had tried and were still struggling. But you take it only one day at a time, dont think about the future. I found medications that worked for me, I’ve traveled across the world, I finished graduate school, Im working, its all possible. Just hang in there. Many of the posts you see on this website are from people who are reaching out for help so there are also many who are out there living life so please dont be discouraged. Use this site as a resource to research medications and other tips. Go to dr appointments prepared. You will leave appointments hurt and scared and angry or in tears as most doctors are disappointing in this area but its ok there are good ones out there. One day at a time and come here to talk as we can all relate! hang in there you are stronger than you know! xx
I really hate that you’re having to go through this at such a young age. When mine first started, I went a year and a half before it was diagnosed. Finally a doctor friend of mine suggested that it might be TN. I have been under a neurologists care since. I can give you encouragement by saying that the medication cocktail (so to speak) that I took help me immensely, but you have to find the combination that works. I have been able, when my pain goes into remission, to stop all my medicine for a time. This last time it started I knew what to tell the doctor to put me on right away. Even though she had to adjust it several times, we finally found what worked. I’m just now being taken off some of the medicines slowly and my pain, although still catching me at times, is almost nil. The most important thing to remember is that now you know what is happening to you, and you can start treatment before it gets severe, when or if you have another episode of pain. Just keep going knowing that there is relief and you’re doctor will find the right treatment for you!
Hi Sorry you have been diagnosed with the Beast, things will get better as your body adjusts to the medication x It sounds as though you are UK based and we do have a UK group if you’re interested https://www.facebook.com/groups/558857264148050/
I’m sorry you have this diagnosis. I think only those who also have the condition have any idea what you’re going through. There IS hope. Getting diagnosed is the first positive step!! Then it gets Interesting. It’s been 7 months for me since the diagnosis (but 2 1/2 years to get that diagnosis) and I’m still experimenting with various treatments to see what works. Carbamazepine and B12 has stopped most of the electric shocks. Yes, the side effects are unpleasant but compared with the pain, I’ll live with them. I’m lucky to live in a state that has medical marijuana so I also use CBD oil for the burning and aching in the lower jaw. When it gets bad, I can increase the dosage. My point is, be patient with your body and how it reacts to a particular medication. I was lucky in that my doctor tried one thing at a time. It was frustrating because I wanted an immediate solution (of course) but she was absolutely right. Again, THERE IS HOPE. I wish you the absolute best in finding what what you need. We’re around when you need to vent!
Hello - I am sorry that you have been going through this pain!! I was recently diagnosed in June. After many MRI’s, CT Scans etc later. I can glow in the dark!! It took me to be my own doctor and then insist to see a neurologist. I have been on a number of the recommended drugs. Some have had bad reactions. I also have a B-12 deficiency and Iron deficiency. I recently completed Iron IV Infusions. Please know that it takes time to adjust to the meds and to feel better. Everyone is different but we all know your pain and frustration. As many before me have said we are hear for you… Take care … one step at a time.
