Hi! I'm new here, posting my first question. I'm so glad to be a part of this group and to FINALLY have a diagnosis!
My question is this: if you have Atypical TN on the left side of your face/neck, do you get sharp chest pain as well? I've had an EKG and it showed everything was fine, so I'm wondering if it's related to my ATN.
Any thoughts are appreciated. Thank you!
Chest pains are not directly related to TN at all. TN is only on your face.
Anxiety and panic can cause chest pains and all sorts of lovely symptoms. I suffer terribly from anxiety, especially when my ATN is acting up...an invisible disease will do this to you! It is a catch 22 because anxiety also makes TN worse so it is a vicious cycle.
I am currently experiencing symptoms beyond my face too. A lot of them down my neck, shoulders and arms. I have a bulging disc and am headed back to my neuro to investigate.
I think there are a lot of other things that can cause pain around your chest area. Just make sure everything to do with your heart is ruled out.
Hi Kreeves,
I echo justjane37 in making sure it isn't your heart, also a chest xray or even better mri/cat scan determined by your specialist to rule out any other cause.
I thought I would write and mention my chest pain cause, as it may give hope to finding your answer..or help someone having unexplained chest pain that has had all the heart/lungs tests done.
Bear with me I'm a chatterbox :D
I have both types of TN bilaterally. I had a Bone Scan for other reasons besides TN, but also for chest pain, and the result showed inflammatory dye settled on all my costochondral joints of my ribs..they found my chest pain is caused by "Costochondritis" which has now become chronic and never left. Many doctors still believe this "Costo" is a temporary illness like influenza. They can also call it Tietzes syndrome. Specialist doctors understand the condition better and that it can become permanent in people with compromised body systems eg immune problems, vitamin deficiencies
Not meaning to sound like a medical encyclopaedia as this is only my experience, there is plenty of info on the net, but maybe some info I've found can help someone reading this...
Costochondritis can occur after trauma, infection, operations and more, and often it partners up with fibromyalgia. It involves inflammation and/or swelling of the costochondral joints of the ribs and sternal area or xiphoid area. For me it cause sharp pains in various places along my front chest wall, and very sensitive spots all over my chest that feel bruised especially my sternum.. Treatment can vary depending on the person but a rheumatologist was the best person to deal with my pain. I have had several rounds of cortisone injections into the costal joints, not fun but help.
My Costochondritis may not be related to TN, but the pain flares up alongside my TN episodes, when I am 9/10 TN pain the chest is also painful at it's worst. Heat bags are my biggest helper. I am thankful it isn't something more serious but still it is very painful.
I have a question for you, has your doctor examined you and pressed on areas of your chest? I ask because I found my doctors reluctant to feel and examine the area itself. They sent me for heart tests first and examined later (probably best).
Hi Kreeves. Glad you found us - one of the few good things of TN. :)
I have bilteral TN and ATN that sometimes shoots into my throat and chest, geberally on the right. Since I get it rarely, have had it for years, and since it is on the non-heart side, I get it in my armpits and elbows, and is classic nerve pain, I haven't pursued it. That doesn' mean you shouldn't!
But - TN has many faces. For me, the chest pain always comes with a dash of throat, yet I might feel nothing in the face. At first, I thought it was my asthma, as my TN was more periodic then, and I woke up from it in the night. Inhalers didn't help, so I took it from there.
If you have concerns, and since you are at the beginning of this journey, I'd do what mel77 says. It might be a number of things, and since they appear in a serious place, it's better to eliminate than self-diagnose. Don't feel self-critical from running to the doctor. At first they might think you are a hypochondriach, but over the next year, they realise you are not. :) And don't forget: even if TN is invisible, it is there, and it is a serious condition.
This conversation is very interesting to me. I am having nerve pain down my neck, shoulder and arm. It also creeps under my armpit and along my rib cage.
An MRI I had over a year ago showed a bulging disc in my cervical spine. I went to my GP and she attributed these pains to the bulge and I have started physio.
The thing is that these pains flare up with my TN. I am getting pain around the back of my head that will shoot down my neck and shoulder say. It feels very connected. You all know what it is like with this pain--everyday is different but it follows similar patterns and places. We get to know the pain. Well this pain acts exactly like my TN. I am not convinced that it is as simple as a disc bulge. I have had this arm pain on and off for a long time.
The rib and chest pain totally freaks me out. I had testing done last year for my heart and everything was fine. I don't want to discuss this more with my GP. I am uncomfortable around her. She thinks I am somewhat nuts and is pretty dismissive about everything. So I am seeing my neuro next Monday. I feel like such a complicated person sometimes. I am 38 going on 70! lol. Heat is my best friend also.
And doctors never touch me. This is something that I have found to be so strange. They will order tests and prescribe meds like mad but they will never lay a hand on me or examine my face in any way. Just something that I have noticed and is puzzling.
Tineline I agree you put it so well, "Don't feel self-critical from running to the doctor. At first they might think you are a hypochondriach, but over the next year, they realise you are not." This. Try not to overthink the initial visits, they will become easier as your doctor gathers patterns in pain and your recent symptom history. Your doctors understanding of your pain will improve over time and the accumulation of information you give in your visits. My own GP at first was reluctant to prescribe me any medication for TN above a "starter" dosage eg 100mg Gabapentin at night, as opposed to now he is comfortable with the 2700mg a day (I am building up to currently) on recommendation from Neurologist..You will find over time it will improve, keep pushing for an answer as you would do for a loved one who was in pain, stay consistent and remember YOU are your best advocate :)
Justjane37 I am also 38 this year, I feel my body is betraying me with all the different things happening! Aside from TN and costochondritis I have disc bulges L5 S1, S2 and diminished hydration/cushioning and bulge C2 also found in bone scan, and the pain from these is a dull burning ache..this is just something I have learned to live with as it isn't my number 1 priority pain wise. It used to be my biggest issue when I developed back pain at 22 yrs old. Slipped disc a few times since then which was excruciating!! But nothing like the ice pick zapping nerve pain I feel of TN, so I do my best to ignore and anti-inflammatories seem to help when I need them. They don't however help the chest pain at all.
Just a suggestion, could you describe the chest pain and that you feel it is linked to the facial pain to your Neurologist on Monday? And mention could he/she recommend the correct specialist to see and write it in his doctors notes for your doctor when they communicate? I had a recommendation to my Rheumatologist this way by Neurologist letter/follow up and my doctor took this very seriously...and it seems reasonable that a doctor would follow a recommendation from a physician?
Great idea about my neuro recommending another specialist. I find it so frustrating that we have to push so hard to get help. Honestly, if it were up to my DRs nothing would happen. So, push on I will. My neuro already knows about the arm pain but not the rib pain and things have gotten a lot worse since I saw him last.
My neuro is very understanding, progressive and open minded so I think the appointment will be good. He already wants another MRI with contrast done bc of my worsening ATN pain with the arm pain. I am going to ask for a full spinal MRI with contrast. And yes! I will ask for a referral or recommendation from him. I only found my neurologist by recommendation from a neurosurgeon I saw. I asked my GP for a referral to a neurologist when the ATN started two years ago. She laughed and told me it would probably take a year. I researched DRs on my own and came to her with paperwork in hand for a referral to a neurosurgeon.
The last time I saw my GP about the disc bulge and all these crazy symptoms she said to me. "Well aren't you seeing someone for your face? They should help you with that". Oh, and she also said that the Nortriptyline I am on should be helping with all of the other pain. I am 38! I want answers as to WHY I am in pain not to hide it with medication. Very unhelpful.
mel77 said:
Tineline I agree you put it so well, "Don't feel self-critical from running to the doctor. At first they might think you are a hypochondriach, but over the next year, they realise you are not." This. Try not to overthink the initial visits, they will become easier as your doctor gathers patterns in pain and your recent symptom history. Your doctors understanding of your pain will improve over time and the accumulation of information you give in your visits. My own GP at first was reluctant to prescribe me any medication for TN above a "starter" dosage eg 100mg Gabapentin at night, as opposed to now he is comfortable with the 2700mg a day (I am building up to currently) on recommendation from Neurologist..You will find over time it will improve, keep pushing for an answer as you would do for a loved one who was in pain, stay consistent and remember YOU are your best advocate :)
Justjane37 I am also 38 this year, I feel my body is betraying me with all the different things happening! Aside from TN and costochondritis I have disc bulges L5 S1, S2 and diminished hydration/cushioning and bulge C2 also found in bone scan, and the pain from these is a dull burning ache..this is just something I have learned to live with as it isn't my number 1 priority pain wise. It used to be my biggest issue when I developed back pain at 22 yrs old. Slipped disc a few times since then which was excruciating!! But nothing like the ice pick zapping nerve pain I feel of TN, so I do my best to ignore and anti-inflammatories seem to help when I need them. They don't however help the chest pain at all.
Just a suggestion, could you describe the chest pain and that you feel it is linked to the facial pain to your Neurologist on Monday? And mention could he/she recommend the correct specialist to see and write it in his doctors notes for your doctor when they communicate? I had a recommendation to my Rheumatologist this way by Neurologist letter/follow up and my doctor took this very seriously...and it seems reasonable that a doctor would follow a recommendation from a physician?
I have TN1 and Tn2 I have never had chest pains. I have had this painful disease for over 20 years.....good luck t
o you!!