I know im new to this site as well as this diagnosis. i had my first appt with my pcp post diagnosis. It didnt go well. the pain is unrelenting. my family that is usually distant and detached is devastated. i saw my dad cry tonight for about the third time in my entire life. i read that they once called TN the “suicide disease” and its an appropriate name. i feel so hopeless and broken by this. ive only told one of my friends about this diagnosis and very limited family members…i guess im just hoping for some conversation and/or support from someone who TRULY gets it. who has been there. i hope someone will find time to help out the ‘newbie’.
thanks
a
There is hope. You have found us and this site has more information than you will often get from the doctors. But there is hope. I'm sorry your family read that this is the suicide disease, it causes more stress and worry for our loved ones. You mentioned the appointment did not go well. What happened? Does your doctor have you on any medication?
Hi Ashley,
We have all been there! We completely understand what you are going through. Not only is it painful, it is also isolating and frightening. You are lucky that you were diagnosed so quickly. Are you starting medication? I know the pain is unbearable. Hang in there, learn as much as you can and ask anything you want! An invisible disease is hard for people to understand. No one could understand this pain unless they have lived it.
Message me any time.
Jane :)
Ashley,
I was just diagnosed 2 weeks ago. I know exactly how you feel. I have become so isolated because I’m scared to leave the house. I’m scared I may be somewhere and have an attack. I’ve been on 2 different meds and I’m still having pain. I never dreamed my life would turn out like this. I was once a long distance runner but now running only triggers the pain. Everything I used to enjoy I now can’t do. My whole world has been turned upside down. My family and friends don’t understand. I feel so alone. You are not alone in this…I promise.
Hi Ashley,
I just read your post and I want to let you know that you're not alone with this! I have atypical TN which started in 2012, and I remember the first few days after being diagnosed and how hopeless and helpless I felt. This site is wonderful and there's so much support from people that really understand the pain you're going through. I know it may seem impossible right now, but you will have better days ahead. I'm sorry that your family are so upset. TN is very difficult for family and friends to comprehend - my family accepted it on an intellectual level but it took a while for the reality of it to sink in because no one could "see" it.
You mentioned you saw your pcp and it didn't go well. Have you been seen by a neurologist yet? At least you've been diagnosed which isn't always the case with TN, it took 17 months for me. TN affects everyone in many different ways, and I've learned a lot of helpful advice from people on here that I wouldn't get from a doctor. And as shadow2 said - there is hope! It is scary right now but you will get through this. Keep posting here - there will always be someone to talk to here who truly understands.
Hi Ashley
I was 27 when I was diagnosed with TN. It literally takes the carpet from right under your feet and can become so debilitating and segregating. Have you been to or searched for a neurologist? You’ll want who is familiar with TN. If you have to travel, I recommend doing so! Having a dr who is not familiar with your Pain and condition and the affiliated aspects of TN, it will get you no where. My first neurologist just handed me a bottle of pills, told me my diagnosis and sent me on my way. It leaves you feeling very helpless when Even your own dr won’t advocate for you. Do you know what type of TN you have? Did you have an MRI? Do you have a compression? Are you on any meds now?
Hey, I am relatively new to all of this as well and feeling the same way. I need people who get it to talk to. Ashley, how old are you? You look pretty young?
I can’t have an MRI due to having a pacemaker. They have started me on Lyrica and Valium. I am on Norco at a high dose for chronic pain in my left arm caused by chronic blood clots. I’m waiting to have a CT (my insurance has decided to NOT approve it all the sudden) and neither my PCP or pain doc are willing to prescribe anything else until I can get a CT. and the Norco doesn’t TOUCH the pain. I’ve seen a neurologist for migraines but can’t get it to see him for 2-3 months. I’m trying to find a new neuro or pain doc that specializes in facial pain in a bigger city in the state I live in.
Hi Ashly, I agree with you, it is horrible and we all understand why it is called the suicide disease. This website is unbelievable! I and everyone else here totally get it. Please post whenever you want and someone will respond. I can't imagine what people think when they see someone having a TN attack. My poor husband is always at a loss, but is very supportive. You have to find a good Neurologist who specializes in TN and will be sympathetic and help you. What City are you in? I have a great one here in the Santa Rosa area of California if you want the name. Keep posting.
Debbie
Ashly, have you checked this website for a neuro familiar with TN? On the black bar at the top of the page there is a link for doctors that have been referred by LWTN members. It is often a good start if you are unable to locate one. Most neurologists prescribe an MRI for TN patients to rule out other possible causes such as MS, tumor on the brain, etc. I would think a good neuro with TN experience would know how to get the CT you need approved by your insurance.
Never give up hope. Best thing is to get in with a neurologist and neurosurgeon to look at all your options. They’re the best specialist to figure this out. There is some great information here to help educate your family and loved ones. Hang in there, we are all connected by this disease and all understand.
Hi Ashley!
I was just diagnosed myself just this week....referred to a nuerologist immediately who saw me within an hour when I called and explained how much pain I was in and that I had been in pain since October and had already visited several doctors, mainly my dentist! She prescribed a medication called Tegretol for me which I started as soon as I got home yesterday...and let me tell you the relief I am feeling today. Still some dull pain upon eating but it is bearable, unlike what I had been experiencing, and it took effect pretty quickly. Not sure where you are located but I am in Brevard County Florida and I saw Megan Maynard at First Choice...she was so attentive and empathetic and got me started right away with treatment.......what a difference just two days on the Tegretol made....hope this helps......
It is a very lonely disease. I know that I have felt in the past like no one understands and have even gotten tired of explaining it o people who haveno understanding. Everyone on this site is great. And best of all you don’t have to explain it to us. We know first hand. Don’t be afraid to reach out. We are all willing to help.
Welcome to the most helpful site you will ever visit, the ladies (and gentlemen) here are very knowledgable, we have all been there, we have all tried every medication imaginable, we’ve had operations and experimented with anything in the hope we can have some pain free time… It’s a horrendous disease, no one else can even imagine our pain, it will get easier I’m sure, it’s a matter of getting your meds right, it might take a while, be patient, just remember no one else can understand this pain like us girls can, so get on the site whenever you want, you’ll always get a quick reply, talk to you soon again, hugs Anne
Anne, you are totally right. This site is a life saver. It is so hard to even describe to anyone about lying on the floor in overwhelming pain, begging God to make it stop and wondering why this is happening to you. There is always someone on this site who understands the pain and suffering. Good luck! Debbie
Just read in post above that you have a pacemaker...... do you have a history of arrythmia? If so, i'm in the same boat. No pacemaker, but major history of A Fib and SVT.
There is a process of grieving that one goes through when diagnosed with something like this. Do you see a therapist? If not, finding a good one might be a good place to start. Having someone impartial to air your feelings and frustrations to can be really helpful. Also an antidepressant may be a good idea. My PCP said all chronic pain patients should be on at least a low does one due to the isolation chronic pain can cause.
Do you know what triggers your pain? Do you have any hobbies that don't cause pain? If so, trying to do things you love helps.
Everyone here is amazing and you will get all the help and support you could ever want/need! Hang in there!
Open up to change. It used to be suicide disease at times when there were no treatment options.
Now we have treatment options and this is something you could make focus of in the now. You are in pain and that's why you are looking for treatment options. As long as you are looking for treatment options you might find best treatment option which will help with pain and in effect you will be pain free. Pain you experience now will be gone because of change.
Hey, I havent been on in awhile but when I didnt know what to do, or even know who to talk to, this website helped me tremendously. Everyone knows the doctor run around, the medication runaround, the alienation of our normal selves. Welcome, and with time, patience, appreciation of our health (besides the obvious) getting through this is just a challenge like any aspect in life. This website got me through so much, I cant thank the members enough for hearing me out through the computer. Hearing the posts in my head, I could feel the ache, and could come to terms that im not alone!
Hi Ashley I’m so sorry you have to deal with this horrible TN. I hope you are feeling better today, I will keep you in my prayers. I do understand how you feel it’s debilitating and so draining, you will find this site helpful.
Hi Ashley,
This is my first post in almost a full year. I was diagnosed about a year and a half ago but had suffered and gone to multiple docs, oral surgeon, dentist etc. Had an Mir and still no diagnosis for about three years. It started out in my mouth, mostly my gums and side of my tongue and cheek in my right side but it eventually spread to my teeth, jaw, cheekbone and even sometimes my nose and temple. It was constant in my mouth to where I could not chew, brush, or wash my face in that area. I was going crazy but after i was diagnosed I didn't want the prescriptions. I was so scared of the side effects so I put myself through more pain. I ended up having a bunch more health problems. I've had two major surgeries since my last post. I won't go into those details as they are irrelevant to this but what I wanted to say is that after all my suffering I finally decided to try clonazepam and after about two weeks my pain level was and remains almost non existent. It makes me super loopy so I take it before bed. I still have achy days where my teeth and gums hurt or my jaw or all of them but even those days are mild compared to no meds. I'm lucky that I've had success with just the one med but with ATN it's different than type 1 so I guess the main reasons I'm responding is to let you know I spent years suffering undiagnosed, got diagnosed and was too scared of the meds but finally found my miracle. If I even miss one night my face acts up so don't give up, talk to your doctor about clonazepam. It's my miracle and take everything you can from this site. This place got me through dark times. Times when I wanted to check myself into a psych ward. The support and info here is amazing. Sometimes just knowing I wasn't alone or crazy was comforting enough to get me through another day. Good luck and keep searching. You'll find what's right for you. ATN is a crap shoot with meds but living mostly pain free is possible. Also I have a bottle of viscous lidocaine, it's tricky to use but it helps when needed. Don't give up :)