I had symtoms 2 years now but was very mild and here and there kinda thing. Now three months level of 9 pain by night time. Had appointment but Pain management sent me off to Neursurgeon. Saw him Friday gave me a cream (not helping) cannot help with my current meds the regular Neurology does that. Need to go back to Pain management group but guy I see is out of the office all next week. Tried to go to ER to get some relefi. Mass place a new law about dr prescribing any narcotic. doc on Friday said I just met you I cannot help you. Pain management says he is out. but covering nurse practinor like get it from er I got it from. I cannot since the new law started past Monday. ER doc say cannot help. so im stuck. I should just go kill myself cause I am reach out of help and not getting any.
I’m so sorry you are having a hellish spell. The crackdown on pain meds is cruel to those most in need of them.
Is your neurologist able to adjust your meds? Have you tried a tricyclic antidepressant? They often help type2 tn sufferers. Nortriptyline has been a blessing.
The meds I am on Depakote 3.5 weeks and Gabetenin 2 weeks nothing has hit this pain yet. called and left a note on patient portal no call back yet.
I went to er since a new law pass. I cannot get help. I ask to be admitted I ask for mild sedation. he said sorry no.
im lke what so I have to suffer
whne they nurse came in we talked a bit and said she knew I am in a hard place cause the pain doc who knows me on vacation. so I guess I have to kill myself cause I cannot do this. she did not say anything and did not run after me. that is crazy.
I’m sorry you’re going through all of this. Do you have a primary care doctor who you can call to see if they can help? How much gabapentin are you taking right now? Where is your pain exactly? If you really feel suicidal go to the er and ask to see the psychologist. You may also want to tell them you have a neurological issue and need to see a neurologist for the pain. That you aren’t seeking narcotics. Also check out this link for emergency room http://facepainhelp.com/profiles/blogs/emergency-room-information-for-facial-pain-patients
Tried to go to ER last night. but apparently Mass pass some law not give out opoids on chronic patient seeing firs time.
What kills is the pain management who knows me sent me to another dr on that Friday and now he was on Vacation today and the whole next week. My primary does not want have any thing to do with any management of my TN.
This whole thing is I am in a Rock and Hard place with no luck for a few weeks. Regular neurology might be able to do something with my current medication. Again waiting. What bothers me I have the worse patient and you are asking me to wait
I said how about admission to help control the pain. nope. mild sedation nope
so you are telling me you cannot help me
you hve a team. Well I started with the team and they are not working and everyone has their own speciality and says med management one person injection one person. pain management another person
well I don’t know if it’s legal where you’re at but people are finding relief using cannabis. Some people are only using cannabis to control their pain. Also, things like peppermint oil (on teeth/gums or face) seem to take the edge off. Some people find heat or ice also help… Again, I’m sorry you’re going through this.
I have found that Carbatrol (brand name) works wonders for me i have been on it almost 15 years now i have TN2. I cant use just any Carbamazepine tho, it HAS to be this brand name of Carbatrol
Go back to the ER and ask for IV Dilantin. You will get relief and they won't think that you're drug seeking. Let me know how it goes
See if you can get a/your regular GP to prescribe Nortriptyline or Amitriptyline they are a class of anti depressants, and Nortyptyline was the first thing that really helped me after 9 months of constant torture. I was where you are now and I staged a "Sit in" at my doctor, saying I would not leave until she tried something new. Honestly she looked up these drugs in a google search, and it worked. also, if you tell them you are feeling suicidal and that you read there is a chance this one drug could help with your Depression AND your ATN, they might just be willing to try it.
Good luck! Hang in there. It can get better, still a freaking pain in the Ass (or face), but better. Sending my love and good vibes.
I'm very sad to read of your predicament. Please please try to bring down your anxiety. Can you get a massage? can you watch some youtube video and learn yoga breathing? can you take a hot tub? can you try and meditate? Anything to start to calm you down. In my case the high anxiety makes it worse and makes it continue longer. You will find the right doctors and med combination but it absolutely sucks in the meantime. The person suggesting going to the er for the dylantin iv is a good suggestion. Be safe.
HI
Thank you for all your feed back. I am waiting on a call back for Accurpuncture. As for various drugs. I have an issue with Amitripline in the pass and some of the other drugs listed in Stricking back with Blood pressure drops all the way down to 80 over 60 so. We as dr and myself have just narrowed down my choices. I do not understand how they let patient with a level 9 pain just go home. I m like this every night and I am relaxing and going to bed early. But only today first time the pain started early at 8:30 am. I cannot get any relief and getting to be exhausting nightly and you start just to wondering will I ever get relief. I need to know how long any of you got to a point you got a satisfaction relif. I am just tired from my daily cycle that never ends.
OMG, that's terrible that you aren't able to get prescription medication or pain shot from ER even to help you with the excruciating pain you are going through. Believe me, my mom has gone many times, even "with" her medication, in pain and it's crushing to sit and watch her. The feeling of helplessness consuming me so, I want to tell you what she has resorted to. Of course the choice is yours and my mom refused to consider until she couldn't take it anymore. When her pain gets super bad, she either eats a marijuana fudge brownie or takes a few hits of a joint. Afterwards she lays down for an hour or two and it does seem to help. A doctor in the ER recently suggested medical marijuana and she immediately stopped him and refused to hear any more about it but she decided to try it and it does help. I hope that you will find the resource/doctor who can get you the meds you need and when you need them. It's helped that I keep two steps ahead of running out of any medication. She currently takes Percocet, Diladid and Gabapentin every 8 hours continually and even with these strong drugs, unfortunately, there is still pain. Good luck to you and please don't give up. I am praying for you.
My pain started on the morning of November 11th 2014. No warnings, no injury, no reason. by noon all my left teeth hurt, by 2:00 my cheek and jaw joined the party. That night I drugged myself with Ibuprofen and Bennidril to sleep (I do not recommend this as a long term solution) I saw my first doctor about it 2 days later. He did nothing. I was in the ER 5 days later, they wrote me a Vicodin prescription and told me to go to a dentist to check for TMJ. I went to a dentist, no sign of TMJ. Doctor 2, 3, Chiropractor, ER, no help. Now it is December. I took outrageous daily doses (double what was on the bottles) of Ibuprofen and Tylenol in an alternating pattern every 4 hours through the day (one GP had recommended it.) I rationed my Vicodin to 10mg a night taken with my last IB dose. I would sleep 3-5 drugged hours and wake to the sound of my own screaming and whimpering. It was traumatic.I put Ice packs on the back of my head behind my ear, it sorta helped,and gave me a new sensation. I had light frost bite on my head/neck for weeks from freezing it so often. I lived that way for 4 months and 1 week, still dragging myself to work at my full time job. My mother made me an appointment with her GP in Seattle and I drove 2 hours to get there. She was the first Doctor to suggest the possibility of TN and that was AFTER she performed a search online to double check she knew the symptoms. I would later find ATN myself. The next 6 months were spent hopping from one drug to the next each with terrible side effects, some as debilitating as the pain. There were at least 6 times I seriously wished I could kill myself without hurting my friends and family, because I was only living because I knew how much they would hurt if I left them. The first several were during those initial months where I could find no relief and no answers. I was 100% certain that this would kill me from exhaustion in a matter of months and it could not come soon enough, I could see no future worth living. The last time came when my new neurologist tried Lyrica. I had my first pain free day in week 2 of using Lyrica, but by the end of week 3 I was in a deep depressive funk and I was having more strong and steady suicidal thoughts than when I was in the worst pain. I had to get off Lyrica, which essentially meant choosing to be back in pain. I started having PTSD type panic attacks, and I stopped sleeping again. That July I gave notice at my Job, which I couldn't do well any more anyway. I finally found some relief with minimal side effects in Nortriptyline, but if those are not good for you I cautiously recommend Lyrica, but ask someone in your life to watch you for increased depression. I am now 6 months into recovering while Unemployed, and while I still have medium to mild pain everyday, I am on a path to mental healing and some days I think I can accept my new reality. A year ago I read people's stories on here about how it gets better and I swore that could never be me. But now, things are better, not great... but better. Sorry I wrote such a book, but I wanted to let you know I've been in the lowest places, in the most terrible, never ending pain. And by some miracle I didn't die, and my few memories of those months are hazy now.
I wish you the best,
<3 Erika