BEATEN

Hi,

I'm a Registered Nurse and have TN, and no, your symptoms do not fit with the condition. They do, however, fit with Complex Regional Pain Syndrome. This occurs when you have sustained an injury or illness to a particular part of your body (or often without an identifiable cause) the brain consequently 'misreads the messages' from the area of injury and interprets what may be a minor niggle to be one of the the worst pains imaginable. It usually is unilateral and can cover anything from a single limb to a vast area that is disproportionate to the site of injury. Your GP should refer you to a Pain Specialist Team in order for you to get the help you need. Anaestheologists are usually aware of the condition and should be part of such a team. There are effective treatments and the condition can spontaneously stop, and as far as I'm aware it is not known to recur.

Best of luck 🤞

with TN u have pain at eye nose cheek and teeth all on only 1 side of face and rarely both sometimes a pounding type head achee at forehead temple area. check will burn and have electric shock. no neck or stomach pain. u may have TN with another illness. sorry for your pain.

TN doesn't effect abdomen. You may have more than 1 illness

Hi Hauk,

Just checking on you to see if you've made progress in your diagnosis. Sorry you have had such a hard diagnosis. Most of us can certainly relate. I was diagnosed with everything from PTSD to Lupus. It's a rollercoaster for you, I know. And pain that no one can diagnose, makes it so much harder to cope with. Sweetie, have you had Shingles before? People differ but your symptoms sound alot like Post Herpetic Neuralgia, (PHN) that often follows shingles and it can be widespread. I do have Trigeminal Neuralgia confirmed but i've also had Shingles in many different places over the years and so my PHN is in many places. For example, after having shingles on my back lower right hip, the PHN pain might shoot from my back right hip to the back of my knee. For years, I would mistake it for a pulled muscle every time it would start to first come on. After having shingles in my eye, ear, face or hair, the PHN always shows up in the back of my neck, shoulder or back. I've had shingles well over a hundred times, so my case is probably not the norm but what you're describing sounds alot like nerves that may have been damaged or effected by viral illness, such as Shingles. Are hot or cold compresses any relief to you at all? Just a thought. I hope this finds you doing better. You're in my prayers.

~Rhonda

Hi, again!

I had another thought about your pain and I think you should check out Ramsay - hunt syndrome. I've read somewhere or other that it can affect the nerves of the ear, neck and arm.

But complex regional pain syndrome is still a likely culprit.

Do let me know if you have made any progress, and good luck luck in your search for something to help with the pain.

X

Rhonda, Thank you. This advice was so helpful!! Ive had this for two and a half years. Neurologist says not TN?! Primarary DR. says it is !! Just started with this new DR. a week ago. Hoping for help. none of the others take this seriously.

Such great advice. I honestly think that this disease seems to attack the more intelligent people and you are the proof. Anyone else noticed this. There's more good advice given on this site than you can get than in any doctors surgery. Thank you.

Gill

YES, My Dentist, from the beginning, other primary DRS. I had told the Neuroligist that I had been in a car accident in 1997. The neurologist at that time, told me that a nerve in the back of my neck had been stripped of the coating. Still , no response!! perhaps, if they felt this kind of pain for a while, they might think differently of what we go through.

Thank you for you reply. Janice.

Thank you. You are so sweet. Yea I'll hang around and u guys have it just as bad. it's like if u can take it I can take it thing

Thanks Janice. Sweet of you to say. I'm sorry you are having trouble with getting clear diagnosis from doctors. It's exhausting. I've surely been there myself, as I'm sure most of us have. You deciding to work with only your primary physician is smart. I did the same on the advice of someone else suffering with TN, who had been in the same situation I was in and the same situation you find yourself in now. "Too many cooks in the kitchen....."

Not to go negative and no offense to doctors and the fine work MANY of these doctors do and I've been blessed with a great doctor, but many doctors, especially the "specialists", do more talking than listening. I am so truly sorry for the suffering you MUST be enduring while you wait for doctors to make up their minds. We've all been where you are and i realize that fact is little consolation to you but I can offer some of what I've learned along the way. Most of the useful info I have today, I learned from other sufferers on this site. God Bless You All. The reason most doctors don't take TN seriously is because the medical community is wayyyyyy behind when it comes to this disease. Speaking truthful here...If I find myself having to see ANY medical provider, especially any hospital Emergency Room, I always carry a printed handout, that describes Trigeminal Neuralgia, to give to the nurse and doctor treating me. It's shocking to find out how little that the Harvard Graduate doctor treating you, actually knows about your TN. Most doctors are sadly unaware that, historically, Trigeminal Neuralgia carries the morbid nickname "The Suicide Disease". THAT one fact relays the seriousness of your visit. It's YOUR body and YOUR dignity and YOUR pain and they will get paid very well for their services, by YOUR insurance and YOU, so don't be shy and walk in armed with this valuable information printed out and in hand. You can print it right off the web. I never go anywhere without it.

It also doesn't help that TN keeps getting mixed up with other illnesses that are still in question. Also, the word "Neuralgia" confuses many for some odd reason. Keep in mind that your condition is only as serious as the very over-worked nurse dictates on her chart for the doctor to see and if he/she doesn't "get it", neither will the doctor that reads your chart. I found this out the hard way after having a nurse ask me the name of my psychiatrist when I told her I had Trigeminal Neuralgia. Since that day, I always break it down into simple terms, saying first, "I have damage to the fifth cranial nerve in my head and the pain bounces around like lightening in a bottle". THEN, I call it by name. They normally get it. As for your doctors, your primary doctor is listening...go with that. Go with what you are comfortable with but you really don't need any other doctor. What a regular M.D. might not know, they can find out and the smaller the circle, the faster you get the dignified treatment you deserve.

When I first decided to put all my trust into only ONE doctor to handle all my care, I began it with a written letter to my doctor, detailing my condition and stating my case, making it very clear that I know my body better than anyone else and i was fed up being a "guinea pig", subject to medical tests, procedures and meds from previous doctors I had seen before and that I was placing all my confidence into my trusted doctor who listens to me when I speak. It was a healthy beginning and i would suggest the same to anyone because this disease requires attentive and aggressive medical care and waiting for a return phone call from your doctor when you are being electrocuted on the inside, is inexcusable and cruel. I can imagine your frustration with your Neurologist. When I first started out, my own Neurologist diagnosed my Trigeminal Neuralgia as being Lupus. Five days later, I was diagnosed by another "specialist" with PTSD, supposedly from my breast cancer in 2006. Fortunately, I received a correct diagnosis but considering the unnecessary pain I had endured while they all made up their minds was unacceptable to me and it was then I decided to place all my care into the hands of my MD and I've never regretted it. It's been 4 years now and my doctor has never let me down and if he isn't sure, he consults with another doctor. Meanwhile, I have a direct line to my doctor and his entire staff knows the urgency when i call.

Not sure if this will help you in your diagnosis and cases differ by person, but doctors look for a few specifics when trying to diagnose Trigeminal Neuralgia. You may have noticed these symptoms in yourself and might want to bring your doctor's attention back around to your chart, when it was previously listed therein. First thing, being the absence of any other cause. For example, CT showed no tumors, etc. Sadly, it's often by process of elimination that you get your correct diagnosis. Also, while there are exceptions, one of the defining characteristics of TN is that applying HEAT gives almost immediate relief to TN pain. The relief is temporary but it does most often work. If a doctor is unfamiliar with your specific disease, this tidbit of defining truth can go unrealized. Another defining characteristic of TN is that normal opioids don't relieve the pain of TN. If the docs have you taking several different pain meds that aren't working, that's probably why. Like many others, I've also tried the anti-seizure meds but the dosages are so high, I was more concerned about the strain on my kidneys and liver, taking them. I wasn't getting much relief anyway. All the anti-seizure drugs did was take the fight out of me. This was another reason I felt better only dealing with my one physician, because overlapping of meds is a medical risk for us all at the dosage levels that doctors are blindly prescribing for Trigeminal Neuralgia.

I don't know if any of this info will help you. I truly hope so, as it helped me greatly when many kind people here on this site took their precious time to share it with me. I am forever grateful. Please know you are in my prayers and you are NEVER alone. So many great people here on this site. You take care friend and keep us posted.

~Rhonda

Hi Janice. I typed a previous response to you but it is being "moderated" : )

Hopefully it will be posted to you soon

You got that right, Gill. I was just saying that most of the valuable information I received about TN, I found on THIS site. You know, I truthfully had not noticed before you posted it here but yes, there does seem to be a correlation between the educated and this disease. I never thought of this before. Now, that's a puzzle indeed. Many medical conditions on record have been proven to be reactive to stress. Do you suppose that stress might be a specific trigger? You make a good point. Just a theory but the educated are often quite busy and with this fast paced lifestyle comes unexpected hurdles and thereby stress is a constant. I think I will do some research online for any possible case studies that examined this possible connection to see if the numbers caught any attention. How are you? Hoping all us well with you and your family. Many sad stories being told of this dread disease. My heart goes out to them all.

~Rhonda

Hi Rhonda,

all your info., was very helpful. The Dr. I have now Ive had only a few months. Iam on Lyrica, 25 mg. a day., and 5 mg. of diazapam a day. Also 4-5 Tylenol a day. It does take the edge off. I get very tired, and have balance issues. Also I have severe anxiety, panic attacks and depresssionn. The last two and a half years have been a nightmare!!! TESTS, TESTS, ...SINISITUS WAS THE ONLY THING THAT THEY SHOWED. My back xray showed osteoarthritis ., also my shoulders have arthritis. Its pain everyday!!! The tension is overwhelming!!! Iam nearly 70 years old, so pain goes with the territory. But this is so un real!!! Lsat winter I was midiagnosed with a heartattack!! That sent me into a total breakdown!! That DR. primary, was so heartless. His equipment was so old, and un maintained. The nurse thought it was funny. She had put some of the electrodes on upside down!!!! And the battery need to be replaced the following week!!

The incompetence is terrible out there!! Thats why healthcare is so expensive, and no one gets proper care.

Thank you for the info. Its nice to know someone cares. Best wishes to you. JANICE❤

I'm so sorry you have been through all this. Be especially careful with that Tylenol, taking it everyday. Yes, it is a real shame what sick people have to endure at the hands of the medical profession. Fingers crossed your new doctor will give you the care you need to be comfortable and pain free and also the care you deserve. Sweetie, don't take any mess off these doctors. You are sick and if people in charge of your care aren't acting right, let them know it. You are a person and you deserve way better than ignorant incompetent care. I used to be quiet and never rocked the boat. But now....after allllll I've been thru and after years of tolerating the same incompetent care you describe here and (like you said) TESTS TESTS TESTS, i lost my shyness and i will not only rock that boat, I'll drive it to another port, if need be.. HA! Get me out of pain, people! Lol.

Seriously though, you've been through alot and i know it must be hard to laugh at times but you are not alone....you are never alone. If it weren't for this site, I'd be nuts by now. Just the other day, I was an emotional mess and it was Merry Julianna to the rescue. When it gets rough, it's nice to know someone is there and understands what you're going through. We are all with you Janice and we do know your pain. Please know you are in my prayers.

~Rhonda

Hello Rhonda,

Thanks for the info. so helpful. My DR. has already said that there isnt much to give me for TN. gabapentine, and pregablin. SO, I will have to insist on more help from her. Next week I go in for a physical. Maybe she will up my dosage of pregablin. my anxiety and fear are over the top right now. I dont think I will ever be the same again. My financial resources are limited. Therefore, Iam not in a good place. Only Medicare and a supplemental insurance.

Thank You for the prayers, I appreciate it more than you know.! Best Wishes to you, Janice.

I'm sorry Janice. I know all this is scary and frustrating for you. You hold on tight, friend. Life is still the best game going out there, so you hang in there. We will be thinking of you this week as you meet with your doctor. I hope this next visit brings you more answers and alot more pain relief. Praying

~Rhonda