Recently my husband has been diagnosed with possible TN, and everything we read it points to type 2. His primary has sent us to every specialist out there and he has been diagnosed with everything from migraines, internal shingles, Ramsey hunt, lupus with sjogrens syndrome, and now finally tn. All of them was nonsense! The only one that actually fits and makes sense to what is going on is tn. Now our primary for whatever reason is having a hard time sending us to a neurogologist? I’m so confused by this! Luckily we go to church with a guy that is a PA that works at a Spinal Institute that know’s a neurosurgeon and gets us in with him. We see him and he says he thinks it could be tn but prolly not be tn, bc tn pain is not constant and is very sensitive to touch. And there is no such thing as type 2. We informed him from what we read there is 2 types and my husband has the 2nd type, bc his pain is constant burning and stabbing pains in his eyes and hears. So he says well I want to rule it out so I’ll put u on tegretol and if it doesn’t give u comfort, then u don’t have tn. He also said that tegretol was the safest drug out there to take with minimal side affects. My husband took I 100mg the next morning and he was a walking zombie, couldn’t function, broke out with 2 sores on his tongue, his skin was peeling off his face and he had an allergic reaction to it. So he quit taking it and called to request another rx. The Dr ordered an mri and didn’t want to put him on anything til the mri got done, so we were fine with that. Well they called to tell us insurance covered everything but 1,000.00 and they wanted that money upfront which we didn’t have. So now the Dr wants to put off treatment til mri is done. I just don’t understand! Why can’t he try him on another anticonvulsant medication till the mri is done, so we can see if something works. At this point the pain is so unbearable for him he doesn’t care if it’s trial and error. Another thing is we went back to our primary to get referred to another neurologist where we could have the mri done and have a setup payment plan done but our Dr isnt referring us and is ignoring us and not calling us back. We are feeling unimportant, like no one cares, we have paid out of pocket to all these doctors and no one cares. How do we get in with a neuro without going through a primary?
TN doesn't show up on an MRI not any MRI. If you are at The Laser Spine Institute you are absolutely at the wrong place
The Dr was looking for a compressed nerve, or possible signs of a stroke, or anything else that could possible be causing the pain.
Wow, I would find a new GP. My GP was very sensitive to what I was going through and sent me to the Neuro the next day. He called her with me in his office and they set me up for an MRA and an MRI. He also consulted with her on the phone and they had me on Gabapentin and Amitriptyline before I left the building. It took a couple of days to relieve my symptoms but now I am 70% pain free and that is HUGE for me. I was in so much pain I that I could not function. I went to my dentist first thinking I had something wrong with all my teeth on my right side and he was in tears as he saw how much the exam was hurting me. I live in Utah maybe you should make a trip to see a doctor in another state. All my doctors have been caring and compassionate.
This is terrible I am so sorry! but it's not all that different from my Story. I am 25, Female, and my ATN started November 2014. I have yet to be officially labeled type 2 but my pain is perfectly described by the type 2 symptoms and doesn't fit 80% of type 1, so after my TN diagnosis and research I started informing Doctors I was type 2 and no one has questioned me on it yet. I had almost no help from ANY of the anti-convolsents, I tried them ALL, seriously, it was a disaster, I was still in pain, still couldn't sleep, and had a train of TERRIBLE side effects that only made life harder. My advice, whatever it is worth: see if you can get your GP, or a new GP to prescribe either a Fibromyalgia type drug, like Lyrica, (but be on watch for Depression, and other side effects) or my best choice-try to get on Nortriptyline, or amitriptyline More and more studies are finding that they are one of the most effective ways to treat type 2 TN/ATN. I am actually functioning again now that I am on Nortriptyline. The only major side effects for me are Extreme dry mouth (I go through like 3 packs of sugarfree gum and mints every week) and some added sleepy/drowsyness, but they are SO worth it! Bonus, being and antidepressant, it has helped combat the suicidal depression I was in after being physically tortured for a year. I still have low levels of breakthrough pain daily, but I sleep great, and it is livable, where as before it was not. Going in and asking for an antidepressant for depression, and "might" help with the pain is also a good way to pitch it to a doctor on terms they are more likely to understand. Honestly, my GP put me on it when I refused to go back to the Jack Ass Neurologist who refused to try anything outside his 2 drug comfort range. She literally did a internet search in the exam room to figure out what to try next, and it worked. I wish you all the luck in the world, and he is very blessed to have such a wonderful supportive spouse. Hang in there, and don't forget to take care of yourself. This is a long hard road.
Thank you so much for responding back and sharing your story with us.
Out of all the specialists we seen, one had been a rheumatologist, he put my husband on amitriptyline 10mg, very low dosage. We told our neurologist that he is taking it and the neurologist basically said “oh that stuff is crap, throw it out, it won’t work for tn”. Let me remind u he is grouping tn and tn2 together and thinks tn2 doesn’t exist. All he did was prescribe my husband percocets and the anticonvulsant which he had a bad reaction too.
I’ve done a lot of research on tn type 2 and have read a lot of people’'s stories that the antidepressants have worked. It’s just us getting to the right doctors to get the right medications. It’s very sad that I have to do the researching and take the research to the doctor myself to prove the doctor he is wrong.
Question, what mg are u on with the antidepressants?
I’m so sorry that you have this horrible disease and have to suffer. It is so heart breaking to watch, and I can’t imagine going through it. I only wish to take half of my husbands pain and put it on myself just so he won’t suffer so much. I’m happy to here u aren’t suffering as much now bc of the medications. I’m praying my husband will get there soon.
These doctors have to much pride and the one that u speak of that did the Internet search is a good doctor and we need and should have more like her in this world.
I am always happy to share what worked for me, sharing my story with someone it might help helps keep me sane :). I started on The Nortrip at 25mg (one pill, once a day) I noticed a slight improvement, brought it down from a constant 8-9 on the pain scale to a 6-7 about 2 weeks later we increased to twice a day, or 50mg a day. Mostly it was down around a constant 4, with spikes of 6-8 on that dose. Now I am taking 75mg a day, so 3 pills. I am terrible at remembering to take the mid day pill even with alarms to remind me, so it probably is not as helpful as it could be. Now I have moments where I only barely feel a kind of numbness tingle and I get breakthrough spikes less. The pain doc I am seeing now said the max dose he will do is 100mg a day. I am saving that last dose boost in case I build up a tolerance over the next few years. The longer I can put off having to find new options, the better!
I hate having to convince doctors to listen to me, because I KNOW MY BODY! So when I find one who will work with me instead of tossing orders, I hang on to them. If you or your Husband want to see some of the crazy things I have done to cope with this you are welcome to check out the blog I run at www.maskingthepain.com
I take amitriptyline (Elavil), prescribed by my psychiatrist. My neurosurgeon recommended it first, and I declined it because I was afraid it wouldn't mix well with fluoxetine (Prozac), which I have been taking for 16 years since the birth of my child with positive results. When I went to my psychiatrist for a regularly scheduled appointment, he said to just TRY adding a low dose of amitriptyline (10 mg), and upgrade to 20 mg if 10 didn't work. So I did and I got results. My pain was almost constant, mainly in an upper right molar, then progressed to the right side of my nose, and then my right eye was in a clamp and felt like it was going to explode. That was the absolute worst. Combined with a migraine, I was in bed for days at a time several times a month. My neurosurgeon ordered an MRI which clearly showed a blood vessel touching the trigeminal nerve. I had gamma knife surgery by my neurosurgeon on March 3, and that has relieved the pain even further. My eye is no longer in a clamp, but I still feel pain in my tooth, but I can live with that. This all started in July 2014, and it took me a year to get the proper diagnosis. My neurologist who treats my migraines prescribed Trileptal, and that put me in the ER with an adverse reaction in July 2015. I can't tolerate any of the anti-convulsants -- tried some for migraine and had a host of problems with each one I tried. I know the whole TN scenario stinks to hell and back -- It's hard to feel like crap for so long, telling your story over and over again to so many doctors. I was fortunate because I was persistent. I love my life far too much to feel like crap, barely able to function as a parent, legal assistant, and local musician. On amitriptyline, I have found that I have had to slow wayyyy down. I have to go to bed at a reasonable hour or I'm miserable the next day. We've all spent a hefty wad to treat this horrific condition. But once you get to the right doctor and on the right meds, you'll find that you can get by.
Thank you for sharing, your stories are Def helping. I’m gathering research and taking what y’all say in, and I’m bringin this with me to my husbands visits with me and I’m gonna demand for them to at least try him on the medication to see if it works. I hate to say that, but lately I’ve had to go back and forth with these doctors telling them they are pretty much wrong. And in Louisiana all the doctors we have seen haven’t been open minded and basically have looked at my husband like he is crazy.
Hi Tonia,
Your primary doctor is more than capable of prescribing the entire list of drugs such as tegretol. Furthermore, as far as I am concerned, tegretol is not the safest drug out there. In fact it is one of the least safest. A much safer drug would be Gabapentin, although it is not as strong as tegretol.
Tanny
Tanny said:
I agree with you. Matter of fact we are making an appoint with him and asking him if he will just treat us. My husband has been on gabenpentin since this has started, he first got diagnosed with internal shingles. He is taking 2700 mg a day and says they're not doing anything for the burning. I've had many ppl tell us to try lyrica, however I've also heard gabenpentin is just as good. We've done spent so much money on so many rx''s we haven't even tried lyrica, for fear of it not working and us being out of pocket on that also.Hi Tonia,
Your primary doctor is more than capable of prescribing the entire list of drugs such as tegretol. Furthermore, as far as I am concerned, tegretol is not the safest drug out there. In fact it is one of the least safest. A much safer drug would be Gabapentin, although it is not as strong as tegretol.
Tanny
itwouldntbemakebelieve said:
Love yor site! Hang in there girlfriend. You are one strong woman!I am always happy to share what worked for me, sharing my story with someone it might help helps keep me sane :). I started on The Nortrip at 25mg (one pill, once a day) I noticed a slight improvement, brought it down from a constant 8-9 on the pain scale to a 6-7 about 2 weeks later we increased to twice a day, or 50mg a day. Mostly it was down around a constant 4, with spikes of 6-8 on that dose. Now I am taking 75mg a day, so 3 pills. I am terrible at remembering to take the mid day pill even with alarms to remind me, so it probably is not as helpful as it could be. Now I have moments where I only barely feel a kind of numbness tingle and I get breakthrough spikes less. The pain doc I am seeing now said the max dose he will do is 100mg a day. I am saving that last dose boost in case I build up a tolerance over the next few years. The longer I can put off having to find new options, the better!
I hate having to convince doctors to listen to me, because I KNOW MY BODY! So when I find one who will work with me instead of tossing orders, I hang on to them. If you or your Husband want to see some of the crazy things I have done to cope with this you are welcome to check out the blog I run at www.maskingthepain.com
Me again Tonia,
Don't know if this will be of any help. I completed Part 4 of my blog post. You might look under Tanny, blog post 4.
Tanny
Tonia Arceneaux Booth said:
Tanny said:I agree with you. Matter of fact we are making an appoint with him and asking him if he will just treat us. My husband has been on gabenpentin since this has started, he first got diagnosed with internal shingles. He is taking 2700 mg a day and says they're not doing anything for the burning. I've had many ppl tell us to try lyrica, however I've also heard gabenpentin is just as good. We've done spent so much money on so many rx''s we haven't even tried lyrica, for fear of it not working and us being out of pocket on that also.Hi Tonia,
Your primary doctor is more than capable of prescribing the entire list of drugs such as tegretol. Furthermore, as far as I am concerned, tegretol is not the safest drug out there. In fact it is one of the least safest. A much safer drug would be Gabapentin, although it is not as strong as tegretol.
Tanny
Aww, thanks! I am doing pretty well considering. :) Good luck with the stake out at the doctors!
I also agree with itwouldntbemakebelieve that nortriptyline is worth a shot! and its pretty cheap too. I would take it and wait a few weeks to see how it effects the pain before cashing in big money on doctors.
Of course an MRI is very important to rule out scary stuff (like a mass).
H
Ok I've been dealing with TN 1 and type 2 for about 8 years now. First thing you do is get on Gabapentin. It will take some time to work maybe 2 to 3 weeks before you feel relief,but it will relieve an incredible amount of pain. Our nerves send pain signals to the brain and then we feel pain, Gabapentin works by blocking those pain signals before they ever get to the brain. If your MRI comes back clean, no tumors, no masses, nothing that is compressing the 5th fifth cranial nerve that doesn't mean you don't have TN. You cannot see the 5th cranial nerve on an MRI it's too small not possible. If it's a mass that will show up but if it's an artery or blood vessel that is compressing the nerve it's impossible to see unless a Dr opens up your head and physically sees it, this is one of the biggest problems people with TN have to suffer with, no technical proof, other people might not believe you have TN or that you're faking ( What my sister thought for 6 years and resented me for while I was in SO MUCH PAIN ).If you have someone like that in you're life I hope they open their eyes really fast. Last thing I can tell you is there is a Doctor who Pioneered the surgery and cured YES I MEAN CURED many people I think he has a 95 or 96 percent success of cured patients. His name is Dr. Aziz at the Allegheny General Hospital pittsburg Pa 15212. Even if you don't want surgery this guy knows about all types of TN. I live in Atlanta and I had to get to this guy and then his associates and I have the best grip I've ever had on this horribly painful disease. I hope I've helped I truly wish you the best luck. And try to get on Soma
Do you think it is possible that the migraines are really muscle spams does your face swell up or ever feel like a bone or muscle is trying to push itself out of your face, does the skin tighten up and have a pounding nerve going right to your eye maybe pain behind the eye
CindyLou said:
I take amitriptyline (Elavil), presDcribed by my psychiatrist. My neurosurgeon recommended it first, and I declined it because I was afraid it wouldn't mix well with fluoxetine (Prozac), which I have been taking for 16 years since the birth of my child with positive results. When I went to my psychiatrist for a regularly scheduled appointment, he said to just TRY adding a low dose of amitriptyline (10 mg), and upgrade to 20 mg if 10 didn't work. So I did and I got results. My pain was almost constant, mainly in an upper right molar, then progressed to the right side of my nose, and then my right eye was in a clamp and felt like it was going to explode. That was the absolute worst. Combined with a migraine, I was in bed for days at a time several times a month. My neurosurgeon ordered an MRI which clearly showed a blood vessel touching the trigeminal nerve. I had gamma knife surgery by my neurosurgeon on March 3, and that has relieved the pain even further. My eye is no longer in a clamp, but I still feel pain in my tooth, but I can live with that. This all started in July 2014, and it took me a year to get the proper diagnosis. My neurologist who treats my migraines prescribed Trileptal, and that put me in the ER with an adverse reaction in July 2015. I can't tolerate any of the anti-convulsants -- tried some for migraine and had a host of problems with each one I tried. I know the whole TN scenario stinks to hell and back -- It's hard to feel like crap for so long, telling your story over and over again to so many doctors. I was fortunate because I was persistent. I love my life far too much to feel like crap, barely able to function as a parent, legal assistant, and local musician. On amitriptyline, I have found that I have had to slow wayyyy down. I have to go to bed at a reasonable hour or I'm miserable the next day. We've all spent a hefty wad to treat this horrific condition. But once you get to the right doctor and on the right meds, you'll find that you can get by.
I've had migraines most of my adult life, and they have gotten progressively worse over the last 25 years. The TN pain is worse than any migraine I have ever had. Especially when my eye was constantly in a clamp. Since gammy knife surgery on March 3rd, I've had 2 bad pain days, both strangely in connection with my monthly cycle.
I'm not sure that you're correct, McCrayZ. I saw my nerve and the blood vessel that touches it when my neurosurgeon showed me my MRI.
McCrayZ said:
Ok I've been dealing with TN 1 and type 2 for about 8 years now. First thing you do is get on Gabapentin. It will take some time to work maybe 2 to 3 weeks before you feel relief,but it will relieve an incredible amount of pain. Our nerves send pain signals to the brain and then we feel pain, Gabapentin works by blocking those pain signals before they ever get to the brain. If your MRI comes back clean, no tumors, no masses, nothing that is compressing the 5th fifth cranial nerve that doesn't mean you don't have TN. You cannot see the 5th cranial nerve on an MRI it's too small not possible. If it's a mass that will show up but if it's an artery or blood vessel that is compressing the nerve it's impossible to see unless a Dr opens up your head and physically sees it, this is one of the biggest problems people with TN have to suffer with, no technical proof, other people might not believe you have TN or that you're faking ( What my sister thought for 6 years and resented me for while I was in SO MUCH PAIN ).If you have someone like that in you're life I hope they open their eyes really fast. Last thing I can tell you is there is a Doctor who Pioneered the surgery and cured YES I MEAN CURED many people I think he has a 95 or 96 percent success of cured patients. His name is Dr. Aziz at the Allegheny General Hospital pittsburg Pa 15212. Even if you don't want surgery this guy knows about all types of TN. I live in Atlanta and I had to get to this guy and then his associates and I have the best grip I've ever had on this horribly painful disease. I hope I've helped I truly wish you the best luck. And try to get on Soma
Wow. That sounds so hard! I know it's frustrating when docs won't listen. Just because we don't have medical training does not mean we don't know our own bodies. I almost had a run around with my doc about my diagnosis. She was not very well informed, but knew what I was talking about when I suggested TN as what I thought was going on based on my own research. She dismissed it as a diagnosis.
She did however refer me to an ENT. My appointment with my primary was around 4 in the afternoon and she was actually texting every ENT she knew from her personal cell phone to get me in quickly. I saw my ENT the next morning, and did not mention TN to her. I let her come to the diagnosis on her own, which she did after a 15 minute exam and listening to my symptoms. I have not seen a neurosurgeon as yet, but the ENT doc sent me for an MRI and prescribed nortriptyline. My pain is down to around a 7 now.
The problem with my primary care is the way I was describing the pain. She said TN is a stabbing sensation. To me, stabbing is a quick pain, not this endless constant feeling like I'm getting a bad tattoo on my face. Since I was describing it as burning, the primary doc had ruled it out. Thankfully I have very good insurance through work so that helped me get a fast diagnosis.
You have to be persistent, sometimes downright pushy. I'd recommend talking to an ENT in your area and see if they are more agreeable to working with you than against you. Google has been my best friend the past few weeks. If a doc is disrespectful, I let them know real fast that just because they have the education does not mean I am utterly stupid. If this disease has taught my family anything it's that you have to take charge of your own health and not trust the supposed professionals. They get tunnel vision at times and tend to dismiss anyone who does not agree with their diagnosis.