After twice seeing the dentist (no problems there) I saw my Dr. today. Waited til I was in pain to make an appointment. I didn't want to be that person in the office describing a pain that is here today gone tomorrow.
He checked my sinuses and told me my ears are clear, my nasal passages are fine, my ears are perfect. No sinus infection. The he wrote down the two words.... Trigeminal Neuralgia on a piece of paper. Told me in summary what this was but encouraged me to research at home as well. He said: "You will find that everything you described to me is exactly what this condition is". So, I asked... what next?
He wrote me a script for antibiotics and steroids to rule out any infection. He said to call him early next week and let him know how I react to these drugs. He suspects that I will still have some pain. He just wanted to rule out sinus infection or infection of any kind once and for all. Then at that point he said there are drugs (I don't even remember which he said) that serve as nerve blocking type drugs that many people have success with. He said they can take an image of the nerve and it's possible that there could be a tiny procedure to relieve pressure on that nerve.
I guess right now we are just taking baby steps. I however am in denial. I'm glad to know that I'm not crazy (and he assured me I'm not) but it just seems so bizarre.
Is my dr taking the correct measures? Albeit conservative...?
You should see a neurologist. (Don't worry, you'll probably see a couple.) They will do an MRI and start you on meds. Some medication may not work with your system. For instance, I cant take Tegretol. Its makes me sick It can be a process try and be patient but hopefully you will find relief. If you have ever feel discouraged reach out to the group.
My doctor sent me for a bone scan and CAT scan first before he told me what his suspicions were. After that he started me on Tegretol. It was another doctor who sent me to a Neurologist who arranged an MRI after my previous doctor left the practise. The Neuro returned a diagnosis of ATN.
Thank you for all your responses. He wants me to call early next week and let him know how the steroids are helping if at all. He suspects they won't since there was no evidence of sinus infection. If the drug he suggests is Tegretol and it brings relief, would I still have to see a neurologist or can he manage my meds?
I have a neurosurgeon who has seen me for a pineal cysts (incidental) but my local neurologist retired.
Have your doctor refer you to a neurologist. Many general practitioners have a difficult time diagnosing TN so I applaud him for that. My doctor was not sure but she knew it was either TN or two other things and instantly referred me to a neurologist that confirmed it was TN in about 5 minutes time. I'm always thankful to my general practitioner for doing that as I was diagnosed and on Trileptal just 4 days after my horrible first shocking pains.
If you have classic type 1 TN pain, I would delve into researching an MVD sooner than later. I did just that and had my MVD 9 months after my first symptoms and have been pain free and med free for 18 months now. I couldn't live on the meds. I maxed out the Trileptal dose in the first 4 months and was having "hallucinations" at that max dose. I was switched to Tegretol XR (and switched neurologists) and maxed out on that after 4-5 months. I had horrible memory problems on that drug, no concentration, and it sent me into bad hypothyroidism since it blocked the absorption of my Synthroid. I had two MRI/MRAs and consulted with three neurosurgeons before booking my surgery. I made up my mind to have the surgery about 4 months after my diagnosis and so happy that I did.
Okay, I will ask about a new neurologist Monday when I call. Has anyone had any relief from steroids? I know he prescribed it to rule out any sort of infection *along with antibiotic* but I'm sort of hoping it at least dulls the pain.
I am treated by my GP, because Ive seen two neurologist who basically said "yup" you have it and that was that. It was impossible to get an appointment or have a call returned with a question. My GP is awesome and I'm so comfortable with him. It may not be the worst thing in the world to see a specialist and have an MRI done just to make sure there isnt anything else going on. But do whats right for you. If your GP has a handle on the medication and your feeling pretty good. Sure- Why not.
thank you for this. My GP is incredibly knowledgable and I'm positive he's just trying to make sure I stay calm until we rule out infection. I'm sure next week will be a different story when treatment options are discussed. He may very well send me to a neuro but I have confidence that he'll order the right tests first. His knowledge on this was more than I expected.
jml said:
I am treated by my GP, because Ive seen two neurologist who basically said "yup" you have it and that was that. It was impossible to get an appointment or have a call returned with a question. My GP is awesome and I'm so comfortable with him. It may not be the worst thing in the world to see a specialist and have an MRI done just to make sure there isnt anything else going on. But do whats right for you. If your GP has a handle on the medication and your feeling pretty good. Sure- Why not.
When I had my first TN attack I called the TN clinic at John's Hopkins and they told me my GP could prescibe tegretol which is the drug of choice to stop TN attacks. They said since the drugs often work for many people there is no need to see a neurologist. They did suggest I get an MRI with the TN protocol. I live in a small town so I had to drive two hours to a bigger city to get the right MRI. I don't know your insurance situation, but a neurologist is not necessary unless the meds don't work. I took tegretol and went into remission and have been there for almost two years. ;-)
ps--My doc prescribed steroids too-- but only a short-term dose. They can help if your face is all swollen-like mine was- to decrease inflammation.
thanks for your reply. I put a call into my GP today (he's out of the office so should call back first thing in the morning) the steroids aren't cutting it. Today while at work *I work in a monogram shop on a heat press machine* every time a wave of heat would pass near me it would trigger the nerve pain. I also noticed today that a bottle of cold water made me feel as if my teeth were going to explode. I, being new to this, rubbed orajel in the area and it still didn't help. What I find myself doing, and I don't know if I'm alone in this or not, is pressing on my teeth often to make SURE it's not my teeth. Even though all my dental checkups are clean (and the pain is in ALL of my teeth). It seems as if when I drink hot or cold beverages during a flare up it mostly hurts toward the back. And also a lot of my nerve pain is in my ear, so I don't know if that's why my back teeth hurt more.
Question about the tegretol....He had mentioned a few meds that could help TN and I don't know for sure if that's one he said. Should i ask specifically for that, or are there others that will do the job just as well? Also, is it a drug you take daily or just for flare ups?
tacocat said:
When I had my first TN attack I called the TN clinic at John's Hopkins and they told me my GP could prescibe tegretol which is the drug of choice to stop TN attacks. They said since the drugs often work for many people there is no need to see a neurologist. They did suggest I get an MRI with the TN protocol. I live in a small town so I had to drive two hours to a bigger city to get the right MRI. I don't know your insurance situation, but a neurologist is not necessary unless the meds don't work. I took tegretol and went into remission and have been there for almost two years. ;-)
ps--My doc prescribed steroids too-- but only a short-term dose. They can help if your face is all swollen-like mine was- to decrease inflammation.
I just got a call from the Dr. on call. He prescribed Neurontin and told me to call with how I'm doing in about a week or two.... I'm trying to find if anyone has had relief with this
I have had ATN X23 yrs-I had years of misery until I tried Homeopathy-I am better than I have been in years! I take daily-sometimes skipping days,Swansons Earache relief(I don't take that much as I have less frequent ear pain now),Swansons Migraine Relief, Swansons Nerve pain relief and if allergies or sinus "stuffiness",Boiron Sinusalia. I try to keep Hylands Migraine on hand for "pulsing, bursting" pain . Also that contains Spigelia which is specific to the Trigeminal nerve. I also try to keep Hypericum Perf on hand for the healing of injured nerves. I need to get more mag phos for use as well. I used to get boring,burning pain that would start in my ear and spread to 1/2 of my face and head and continue for usually 6-8 hrs straight. And the dentalpain with face pain was hellish. Now I have my little basket by the bedside of things that will help,not harm.I actually don't get the burning head events anymore-just occasionally some in and around my ear and it either quickly goes away or an earache tabs makes it disappear.To me, Homeopathy is nanotech sending a message to the body so it will harness it's own resources to fix the problem. I hope this helps!
I made an error here! It is the Sinusalia that contains the Spigelia! Also,the cost of these Homeopathics is extremely affordable!
thank you for your response. I am a firm believer in homeopathic options. I use Young Living essential oils and have had great success with many things, just not this :( I will look into these items~
erin said:
I have had ATN X23 yrs-I had years of misery until I tried Homeopathy-I am better than I have been in years! I take daily-sometimes skipping days,Swansons Earache relief(I don't take that much as I have less frequent ear pain now),Swansons Migraine Relief, Swansons Nerve pain relief and if allergies or sinus "stuffiness",Boiron Sinusalia. I try to keep Hylands Migraine on hand for "pulsing, bursting" pain . Also that contains Spigelia which is specific to the Trigeminal nerve. I also try to keep Hypericum Perf on hand for the healing of injured nerves. I need to get more mag phos for use as well. I used to get boring,burning pain that would start in my ear and spread to 1/2 of my face and head and continue for usually 6-8 hrs straight. And the dentalpain with face pain was hellish. Now I have my little basket by the bedside of things that will help,not harm.I actually don't get the burning head events anymore-just occasionally some in and around my ear and it either quickly goes away or an earache tabs makes it disappear.To me, Homeopathy is nanotech sending a message to the body so it will harness it's own resources to fix the problem. I hope this helps!
I made an error here! It is the Sinusalia that contains the Spigelia! Also,the cost of these Homeopathics is extremely affordable!