Well - after a completely hellish week and the quick return of all TN pain with addition of migraines - the ER and my doctor got me in to see a neurologist tomorrow morning.
Let’s just say I am terrified.
I took myself to the ER last night where they gave me the “migraine cocktail” which did nothing - IV fluids and 3 shots of morphine. I felt nothing other than my face pain.
My doctor who was MIA this week finally got back to me while
I was in the ER with a new treatment plan - tegretol - it’s actually starting to work!!! Thank goodness!!! 200 mgs. I was stuck in a dark room all week -
Missed work - missed my life.
Now I have an appt with a nuerologist at 9am tomorrow and have no idea whAt to expect. I also have anxiety disorder and am very panicky this week.
I walked out of that hospital last night still in pain after all that morphine. TN is relentless
Glad the Tegretol,is working! The fact that is working is almost a sure diagnosis of TN. Be sure you describe your pain very clearly to the neuro, as that is the only way he or she can diagnosis TN. If you can, bring someone with you to your appointment, and have them take notes on what the doc says. Always good to have a back up.
Good luck, and keep us posted!
Thank you! After seeing a dentist, an oral surgeon, and ear nose and throat dr in two weeks - my internal medicine doctor diagnosed me with TN because gabapentin was the only thing that stopped the pain - however it made me a total zombie. I tried lyrica - but the side effects weren’t worth the benefits. I was doing well - seeing a chiropractor for TN - for about 2 months - then BAM - hit me like a train last Friday and I’ve been out for the count since
Being afraid is a natural reaction to seeing a new doctor, especially one who's supposed to treat you for a condition that's making life extremely difficult. Trust me, I understand. The first time I saw my neurologist I was six and extremely terrified. Just remember that this doctor is going to help, or at least give their best effort. They understand what TN is and they know that it isn't in your head. Just have faith and try to stay calm. If I've learned anything from the wonderful people on this site its that getting anxious or stressed isn't going to make your TN any better. I wish you the best. Let us know how it went :)
*hugs* i had my first neuro appt for TN today, so i can relate.
I agree with Christine, if the tegretol is working, that's almost a sure sign it's TN. And as Mimi has said in another post somewhere, remember that the neurologist is there to support and guide you with dealing with TN.
You are there to ask their knowledgeble opinion about what to do. They are there to helped. Again, as Christine said...please very clear and thorough about you symptoms in order to help the neuro help you!
My husband went with me today to my appt..and even though he didn't do or say anything...his presence helped me emotionally. (I tend to get scared and weepy with docs.) So, if you can, take someone with you.
And remember, after you get home...we are all here; and you can tell us all about the appt!
Amy, make sure to ask the neuro for a plan “in case your pain increases” on how to increase your Tegretol safely. This will avoid having to call him/her while you’re in a pain crisis, or worse having to wait to see them.
Give the tegretol time to build in your system too…could take a few weeks to find your magic dose. Most side effects usually disappear with time. You can always try the slow release version too.
Oh, and ask your neuro about blood work, to check your liver for toxicity from the tegretol. I get it done every 3 months.
Deep breath. Let your neuro guide the appointment but make sure you ask whatever questions you have!
Good luck, Mimi
Amy, here is a link from the FACE PAIN INFO about a first neuro appt. http://www.livingwithtn.org/page/info-4
I know it’s easy for me to say, but this could be the start of something good for you, my neuro has changed my life around for the better, I worship her! I hope all goes well, I will be thinking of you.
Thank you! My appointment went ok. He talked to me for a while and diagnosed me with atypical facial pain of the trigeminal nerve - he thinks it will heal. My previous MRI showed that my brain is ok. Is that normal? Would it show something? He said to continue with the tegretol - increase to 200 mgs twice a day on Monday - and prescribed folic acid and 1 low dose aspirin a day. I really hope this works. My head pain is subsiding my facial pain is at about a 6 right now after 8 straight days.
He also did a full neuro physical. And i am otherwise healthy.
He suggested I see a neuro psychiatrist - to help me cope with the pain and the return of my anxiety/crying fits.
I missed a wedding today. I’m supposed to be taking it easy and avoiding any triggers until the pain is under control. I disappointed my boyfriend. I am so upset. But what do I do?! I don’t know how to handle this. I just want to do normal things.
Amy, please message RED LAWHERN and copy and paste your above comment into it! As a group and in particular Red, we are hard on Dr’s who try to fob off TN patients to psychiatrists. However a neuro psychiatrist may be acceptable to him. I am unsure.
And yes many TN patients here have clean MRI’s even though they definately have TN. Often compressions are only seen on surgery. And BTW, Red hates the term atypical facial pain. He is a kind caring man and will help if he can.
The psychiatrist is a neurology psychiatrist and part of the practice at the hospital. I am currently on medication for anxiety and depression after a debilitating car accident in 2007. I think he was just suggesting that I speak to someone since those symptoms have come back. I was in the ER about a month ago with rapid heart rate and a severe panic attack. Although I have never hear of a psychiatrist that specializes in chronic pain? I’ll have to look her up.
Yes! Ok! That is what the doctor told me - that an MRA might not show anything either - but compressions are mostly seen at surgery. He thinks I can heal - because I am young - whatever that means! I don’t really think that makes a difference: Hopefully he is right. I have more symptoms of TN 2.
Goal is to stick with the tegretol - and see how info. Also I hate medications. But I realize I need to do this. Right?
The incidences of members being helped by non medicinal or surgical methods are rather limited here in group. Please keep persisting with the meds, they build up in the system over a period of time. If you desire and want to see the neuro psychiatrist please do. Don’t let me put you off if it will help. But we have had members fobbed off as mentally ill when they need treatment for their TN, that is to be avoided at all costs and a very different matter to being helped with real issues. All the best, I can tell you are fed up.
I have not heard of TN healing itself,but i may be totally wrong.Mine would go away for as long as a year,but always came back.That's great the Tegretol is helping.Best to you.Don
No it won’t heal…can get remission back and forth… Call your doc Monday, and ask them to call you in two topical prescriptions…LIDODERM PATCHES for face. And LIDOCAINE cream for face.
Then you can keep pain lower!! And still have a life!
I don’t know - the neuro thinks it’s nerve pain from inflammation of some sort and it could possibly heal. I’m pretty proactive and I have a feeling I’ll end up at UPENN.
I’
I’m hoping the tegretol kicks in sooner this later - my head is better - face is not. Progress?
