I am here to try to find out all I can about TN. Hubby has been in pain since Monday on and off mostly on with severe attacks of left jaw. MRI was done yesterday hopefully will know something Monday. His primary care doc to 99 % sure he has TN and ordered the MRI to rule out MS and or brain tumor. His doctor also put him on Tegretol Wednesday. Today he was really good most of the day. Think he over did it cause now it's night time and he is in severe pain again. We have found his trigger point is when he lays down so as you know sleep is almost impossible sitting up. Is this normal to have more pain in the evening than during day time hours. Wanting to know what type of questions do we need to ask when we see the doctor. Any support would be greatly appreciated
Please request a neurology work up and MRI. Also if possible,please consider meds to manage crisis my earnest thoughts and prays are with you both
When I had my first attack(and only so far) I could only sleep in a lazy boy sitting upright. The tegretol worked quickly and I have been in remission for almost two years. It is very unpredictable...comes and goes for a lot of people. Make sure you get the TN protocol for your MRI --I had to travel to a larger town to get the right MRI-eventhough my doc sent me to the local hospital. You have to be informed and self-advocate since the disease is relatively unknown to most doctors. I called the TN clinic at Johns Hopkins(one of top in country) and got lots of info. They told me I didn't need to see a neurologist--that my family doc could prescribe the meds I needed. They also said my family doc could refer me to them if the meds didn't work for me.
Tell your Hubby not to panic and don't read all the worst case scenarios--it will make you go crazy! Hope you get that nerve settled down soon and have many long remissions!!
We have him on tegretol already 4 days now. MRI was done yesterday. We have just had the worse attack he has had yet. They are hitting him one after the other with no relief 4 hrs solid now. Dolatin not sure how to spell given for bad attacks is even touching this one. Yes his gp is treating him unless meds don't work. This is just so hard to watch and me feeling helpless cause I can't help him
That helpless feeling is tough ... My mother watched me for 3 years go thru this and I hated to see her suffer my pain.
I will tell you this - There has been a very High pressure system over the northern US this week . It has caused me some of the worst episodes I have ever been having . I am on Tegretol , I still think that laying down causes a larger amount of blood in the veins and arteries of the skull , causing more pressure on the nerves. I had to prop myself up in a chair to sleep the other night(first time) because the pains were coming every hour and lasting longer and more severe. I have got to work so no excuses at this point.
I can get no immediate relief from anything - Sometimes a fast acting antihistamine spray in the sinus can help to reduce blood flow and swollen membranes and seems to help - not magic but any help is better than nothing.
For me the best I can do is actually pace in circles in a dark quiet room.
Last night as the Barometric pressure dropped my pains have decreased .
what about anti histamine pills
VeteranInPain said:
That helpless feeling is tough ... My mother watched me for 3 years go thru this and I hated to see her suffer my pain.
I will tell you this - There has been a very High pressure system over the northern US this week . It has caused me some of the worst episodes I have ever been having . I am on Tegretol , I still think that laying down causes a larger amount of blood in the veins and arteries of the skull , causing more pressure on the nerves. I had to prop myself up in a chair to sleep the other night(first time) because the pains were coming every hour and lasting longer and more severe. I have got to work so no excuses at this point.
I can get no immediate relief from anything - Sometimes a fast acting antihistamine spray in the sinus can help to reduce blood flow and swollen membranes and seems to help - not magic but any help is better than nothing.
For me the best I can do is actually pace in circles in a dark quiet room.
Last night as the Barometric pressure dropped my pains have decreased .
Welcome to the group, although I'm sorry your husband and you are dealing with this. Check out the Discussion Boards, which are listed under the FORUMS tab. You will see that this very topic came up just last week I think. The topic about pain being worse at night. And just as VeterenInPain mentioned above, the high barometric pressure triggers intense pain for a lot of us. I have found that anything over 30 is bad for me. It has been a rough few weeks on the east coast. If you are in a colder climate, make sure that your husband keep the air off of his face when he goes outside. I wrap my face in a heating pad at night because of the pain, which seems to help me.
Hopefully the doctor you are seeing will get things under control quickly and if this is his first episode, he may very well go into remission quickly. I have had TN2 for over 30 years and have not had a remission for at least 10 years. We are still trying to get the right combination of meds for me. It took a very long time to get a diagnosis and I have been very sensitive to a lot of the meds.
You have found an awesome place for support. We all understand and will do whatever we can to help you through.
CathyInMD
If he has TN 1
Get him to a specialist about MVD
…neurosugeon
Even for ATN could help to have MVD For some
Hi cath. I find my pain more tolerable in the summer,i did have very bad days of course,but ive now had 2 winters with this psychotic disease and my pain is worse in colder,wet months. Does ATN ever go into remission. i am still waiting to wake up one day and im back to normal.
Cathy in MD said:
Welcome to the group, although I'm sorry your husband and you are dealing with this. Check out the Discussion Boards, which are listed under the FORUMS tab. You will see that this very topic came up just last week I think. The topic about pain being worse at night. And just as VeterenInPain mentioned above, the high barometric pressure triggers intense pain for a lot of us. I have found that anything over 30 is bad for me. It has been a rough few weeks on the east coast. If you are in a colder climate, make sure that your husband keep the air off of his face when he goes outside. I wrap my face in a heating pad at night because of the pain, which seems to help me.
Hopefully the doctor you are seeing will get things under control quickly and if this is his first episode, he may very well go into remission quickly. I have had TN2 for over 30 years and have not had a remission for at least 10 years. We are still trying to get the right combination of meds for me. It took a very long time to get a diagnosis and I have been very sensitive to a lot of the meds.
You have found an awesome place for support. We all understand and will do whatever we can to help you through.
CathyInMD
Hi Barbara,
I'm still learning a lot but from what I've learned and from my own experience, the answer is YES. For me, I developed mine after having my wisdom teeth removed and the dentist hit the nerve. It cause numbness in the one side of my face and half of my lip (top & bottom) and chin and strangely, my teeth. The dentist kept and eye on it and said that the feeling "might" return some day. I had some sensation return but didn't develop any symptoms other than that for years. Then all of a sudden, I went into a "flare" of pain in my face that lasted about six weeks that the doctor said was neuralgia. It went away just as suddenly as it hit me. This went on for over 20 years, on and off, with each doctor I saw telling me something different. However, about 10 years ago, the pain started being a more constant part of my life. I have read that TN2, so I expect ATN, which I THINK is the same thing....(someone feel free to chime in here) can be progressive. I have been getting worse over time and was FINALLY diagnosed with TN. At this point, I would just like to get some control over this disease, which is basically running my life right now. The cold weather makes things really bad, high humidity makes it really bad and changes in the barometric pressure impact me a great deal...but it NEVER stops. Today, my pain has been severe but tomorrow, it could be manageable.
Good luck and always remember to be your own advocate!
CathyInMD
hi cathy. Im like that. My pain has been more tolerable for a week.Oddly enough the neurologist told me to not take pain relief,ie paracetomol and the like.I can take nortriptyline and naproxen only. He says that taking too many pain killers can in fact cause 'rebound' headaches,i suffer with lots of pain to one side of my head. last week i was at mild to moderate pain but i was off work,so no fatigue/stress. This week ,today really it has slightly picked up,but it seems cold today. My pain never goes,it just becomes tolerable,and i can distract myself from it. i am still at a level 5 to 6. Me i always hope for remission if there is one for me. I personally am not sure if i have a proper diagnosis,even though i have the issues that ATN suffers have
Confirm your diagnosis with your neurologist, although in my experience that is not always easy to do. It took me 30 years to get a doctor to finally commit to the diagnosis and then I followed up with a second opinion. I think part of the problem I had with the diagnosis was that I also have migraines and they seemed to confuse the issues. Now I have been diagnosed with both and am treated for both.
While it is true that certain medications can cause "rebound" headaches, I do believe that Naproxen is part of that class. I'm not an expect so I cannot be sure of that. It sounds like your doc is just a bit anti-medication.
I highly recommend that you make sure that you get a correct diagnosis and get the appropriate treatment. While I am not pushing the use of drugs, should a day come when what you are doing is ineffective, you will need a doctor that is willing to work with you. I personally feel that I am over-medicated and joined this site to learn more about this disease and my options. I am currently taking about 15 scripts a day - for several medical issues, not just TN. My goal is to decrease the number of meds I'm on by making sure I am taking the right ones to being with.