2 days ago my husband was diagnosed with TN, he went to his PCP for follow up, and he told him the ER was wrong and it is just a side effect of his migraines. The more research I do about TN I believe the ER dr was right, it all fits. But the drug, tegratol, the ER gave him hasn’t done anything, and his attacks are getting worse!! Please help!
my husband also has/had it, was misdiagnised then diagnosed corectly. he went to the er several times. the tn pain made his bp go up so high, blood pressure meds wouldnt even help. i thought he was going to die from a stroke & he could have. He is a generally cheery person, always the jokester, but he found out why they call it the suicide disease.he has been in remission for 2 yrs, ?, now, because, we believe, it was the low carb diet=no sugar, flour, grains. plus he hasnt been to a dentist!!! lol. one day he started to get hot/cold sensitivity in his teeth so he ate a tbl. of coconut oil which is antiinflammatory, antibacterial & antimicrobial. it went away almost immediately, & he had let it get all over his teeth & gums, under the tongue sublingually which makes it enter the bloodstream quicker. buy extra virgin if u can. even if he doesnt get a dr to say it is tn, treat him like he does so he is not in so much pain, & the dr should give him pain meds for being in pain. what do they need to have to say he has tn? They are guessing wrong & someone should tell them so, because they ARE just guessing & they know it
. good luck .
I cannot diagnose your husband unfortunately :(
However I can say that it can take a while for Tegretol to build up in our systems, it is not a painkiller as we tend to recognize them. Not everybody responds to certain meds, it could be after a decent time trial that a different medication my be suggested. Don't give up hope, there are a whole raft of other meds for him to try.
You need to find a good neurologist who already has TN patients as soon as you can.
Keep Posting!
Thanks so much for all the help! if anyone else has some good advice or idea's, pleasse, we need all the help we can get! Thanks again!
Get immediate relief with Rx lidocaine topical patches - got me thru some rough times while meds were not quite up to good dose.
Get the book Striking Back - by Dr. Ken Casey -- our "bible" here !
The more you learn - the faster things CAN get better!
Exactly! Best of luck!
Kc Dancer Kc said:
You need to find a good neurologist who already has TN patients as soon as you can.
Keep Posting!
I was started on a low dose of Tegretol and everyone is right I does take time to build up in the system. Usually a neurologist will try and increase the dose for pain relief and possibly add another medication like neurontin like with me. Hang in there this is a great place for support and answers.
i know how your feeling. my husband was recently diagnosed with TN after 30 years of painful headaches and numerous tests and actually being laughed at by an ER doc. he now is on 1000mg tegratol daily, with a break through med of fiorecet every 4 hours or as needed for the pain. it took about 10 days for the tegretol to build up in his system and work fully. he still gets headaches especially when he is trying to sleep but at least now hes not pounding his head into the wall. the first couple of days on tegretol he was so happy because the pain had met its match and then the pain came on a little stronger again but it has leveled out. just give the med a little time to work and have his doc prescribe something for the breakthrough pain... good luck stay strong...
Earlier posts stating that getting in to a neurologist that has treated TN is so important. My internist was obviously not familiar with TN and did not refer me. Imagine, she wanted to touch the trigger point when i was in wxcruciating pain. When a major attack occurred, I wound up in the emergency room. They did not know how to treat it either. It is a long story but if I had a neurologist early on, it would have helped so much. unfortunately the neurologist required a referral. I made it through the back door by getting a referral from the emergency room. Early on, get that referral.
You need time for the medicine to work. It is a tiring and painful process. Your husband may feel miserable and depressed when the medicine seems helpless . Support from family and friends are crucial. He has to be strong and patience. Hang in there…
We seen the neurologist today, she did confirm the ER DR diagnosis of TN. It is a relief, cause we have a definate diagnosis now, but also scary, what does the future hold for him. She sent him home with another script for the Tegritol and one for a MRI, to rule out a tumor or MS as the cause. But on a positive note, no attacks in 3 days!
I was wondering, did your husband respond with positive results to migraine meds like imitrex? Sometimes my TN feels just like a migraine when it gets so bad I can't tell where it's coming from, my whole head hurts. If it is TN, I'm sorry to hear it. Tegretol took about three weeks for me but soon after that I also got an allergic reaction. It seems that a lot of people are allergic to Tegretol, so if he develops a rash make sure you call doc asap. Did neuro give him anything for big pain, because he might need it.
So glad he is finally getting relief! I, myself, found almost instant relief with the Tegretol. But my doc had told me that it could take 2-3 weeks for it to work, so I was quite pleased and surprised.
Kristen Linker said:
We seen the neurologist today, she did confirm the ER DR diagnosis of TN. It is a relief, cause we have a definate diagnosis now, but also scary, what does the future hold for him. She sent him home with another script for the Tegritol and one for a MRI, to rule out a tumor or MS as the cause. But on a positive note, no attacks in 3 days!
Tegretol ER has been a wonder drug for me. I've been on a relatively low dose (400mg) for the past two years and I've only had three flare ups over that time which were usually due to me slacking off on my medication schedule. Not everyone responds as well to the drug as I did, but I want to give you hope that it is possible to have almost no TN symptoms with Tegretol.