Hi,
I’m 2 months new to tn. With in the last 2 weeks I’ve had 2 attacks. My last one was for 65 hours. I don’t have jolts of pain. My pain is very intense and lasts every second of every hour of every day! There’s no break from it. I lost 10 lbs bc I can’t eat due to the tn hurts my teeth. The pain is all over the left side of my face and head. All I do is cry. I’m on 1200 mg’s of carbamazepine and 800 mg’s of ibuprofen along with some Norco. These meds have done nothing! I went to the e.r and they treated me like I was a junkie. I’m afraid to leave my house bc my last attack was caused by the wind. I’m a single parent of 2 kids and feel like they’re losing they’re mother to this disease. Somebody please tell me that there’s something I can do to get my life back for my kids!
So sorry you are suffering so badly--have you considered surgery? It sounds like you are ready to try something more than the meds. A lot of people get excellent pain relief with the MVD!!
I think you need to see some one urgently to try other meds and maybe discuss surgery. Try to drink protein shakes, you can get good drinks/soups with all the vits and minerals, and calories you need to keep you weight up. I'm so sorry things are like they are for you. Do you have somebody to talk to?
Sending you healing thoughts
Clare
I am so truly grateful that I found this site. I was lost. Nobody understands bc I look fine. I think if there was blood on me more ppl would be sympathetic to this. I’ve been doing the ensure shakes. Everything has to be at rm temperature. I asked my doctor for the surgery he wants to wait and try other meds with the carbamazepine. I wish I had a doctor who had this disease that way he’d understand just how painful it really is. I’ve heard green tea helps, drinking that. I also read hemp oil helps, taking that. I’ll do anything not to feel that pain ever again! Thank you so much for talking to me bc I feel so alone.
Crissy..are you seeing a neurologist or a GP?...If you are seeing a GP I would get to a neurologist with TN experience ASAP....Everyones TN is different with some just having episodes which last a short time and others for months. When I had my attacks they would last anywhere from 6 weeks to 3 months with no break at all. I had MVD after suffering for 8 years and it did just what you are looking for..gave me my life back. I was 33 when had the surgery and now at age 63 have had 30 yrs pain free. There are answers and you are too young to live with this disease for the rest of your life. I like you had 2 kids during my battle with TN and its tough enough with 2 parents its near impossible with just 1. Please get to a high quality neurologist ASAP . Good luck and God bless you deserve to be pain free. Keep me posted...Ed
Reading the other comments I echo the same. You do need to see a neurologist who has experience with TN patients. I myself suffered for 6 years seeing my GP and then an eye ear nose and throat specialist. I had an mri done on my head ordered by the EENT doctor and a sinus cyst was found which I kept thinking was the problem but eventually a follow up mri/mra was ordered that confirmed the compression of the artery on the TN. I knew at that point that surgery was my only option. My surgery was done in July of this year and I was one of the lucky ones who came out of the surgery with little to no side affects and have been pain free now for over 4 months. There is hope, but it will take finding the right doctors to guide and help you thru this process. I would find out in this site if there is anyone who can recommend a good neurologist/neuro surgeon in your area and then ask the hard questions on what their numbers and results are with TN and make an educated decision on moving forward with whomever your heart guides you to. I went thru this process and found a wonderful surgeon who had a great track record and actually is one of a handful of surgeons using a minimally invasive endo scope to reach the site with. This again swayed my decision making. My thoughts and prayers go out to you, and I my hope is for wisdom and direction for you and your decisions.
Jay in North Idaho.
Thank you, thank you, THANK YOU! To all of you for your information. I am very new to this so forgive me for asking but what is a GP? I do have a neuro and from what I hear he’s pretty good. I went in guns blazing after my second attack lasted 2 days and wanted the mvd but he refused. Telling me too try the meds first. And in the last 2 weeks he upped my carbamazepine 3x’s. Now I’m at the max. I’m in the process of finding another neuro that will hopefully do the mvp. Till then it’s all about tears and prayers. One other question, I’ve read about a patch that you can get from your doctor that can help with the pain. Does it really work?
I sympathise completely, im just over 2 months into this horrid experience, constant pain that is almost manageable now, currently having daily pain episodes that leave me in tears.unsure iif gabapentin is doing anything, tried various others and they did even less. barely left the house in 2 weeks. there are some really positive stories on here that do give me confidence for the future. fingers crossed!
Hi Crissy. I’m very sorry you have developed this affliction. I’ve had it for over 20 years now so I can definitely sympathize with you. The abbreviation GP stands for General Practitioner. Your most recent comment mentions that you saw a neuro so it sounds like you are headed in the right direction. If you aren’t happy with your current neuro there is a doctors link up at the top of this page where you can look for recommendations. Hopefully there is one near you. The patches you have heard mention of are lidocaine patches and some have found that they have a numbing effect that helps reduce the intensity of their pain. You should be able to have your Dr call in a prescription for you. Also, you may want to request a lidocaine mouthwash as well. It will make it less painful for you to eat. Feel free to contact me if you need additional help.
Hi Crissy.."..treated like a junkie"..your "junkie" reception is not an uncommon tale on our site.initial step towards pain control can be a nightmare. The Med world is so freaked about prescribing opiates. Oxycodone is one of the meds (gabapentin and limectal are the others) that returned me to a nearly normal life. My Primary Care Dr and the Neurologist had no hesitation about prescribing it.It is tightly restricted, so abuse shouldn't be a concern. There is usually a Neurologist on duty in the ER. Be firm and pleasant in your demand to see Neuro. Arrive at the hospital well prepared with a fact sheet to show to anyone who is not familiar with TN. But step one is to find effective pain control.
p.s. what works for one person, may not work for another. I wasn't suggesting that you need a rx for oxycodone , but just a comment on the dificulties of finding initial pain control. good luck
It breaks my heart to hear how much you are suffering. My TN started July 3rd this year and I couldn't believe the intense pain. After two ER visits and several meds I was pain free for only two weeks then it was back as bad as ever. I read on this website about a woman's whose husband saw an Upper Cervical chiropractor and has been pain free over a year. I made an apt figuring I had nothing to lose but it did work .If you decide to look into this, make sure its an UPPER CERVICAL chiropractor as its a specialized treatment. I would say that from day one of seeing him I have been 99% pain free. Some mild zingers but thats it.
Wow! All this gives me hope. I need to write it down due to the meds make me a little loopy. I am looking forward to seeing my doctor now. I felt like I was driving blind thru this. Maybe there is a light at the end of this tunnel. It would be nice to actually go out to eat and have a steak. Lol. Or just get out of the house pain free. Thank you all. I’ll keep you informed.