I'm fairly new to this and having a difficult time accepting the medications I'm on. I am prescribed 800mg of Gabapentin 3x daily, 300 mg of Tegretol daily, 5 mg oxycodone 9x daily. 800 mg ibuprofen 3x daily. I have my first neurologist apt on Monday. My primary doctor says whatever the Neurologist prescribes for medication is what we go with. I don't know if it's the Gabapentin or the Tegretol or what is causing but I am normally a very out going happy person. And since being on all these pills and I am numb and I am angry. With all these pills it seems rediculous that I still don't get enough relief but I don't. I'm in constant pain that the oxycodone helps numb some of the "symptoms". It helps with the back of my neck and my gums and some headaches but is "some" relief worth the cost of losing myself to these drugs? I'm only 24 years old and have missed 2 consecutive weeks work due to non stop attacks. I didn't leave my bed. Any suggestions as to what may help for anyone else? Has anyone else had the lack of emotions or anger from taking any of these prescriptions or is this something I've developed in my head and just want to blame on the drugs?
Have you considered MVD? TN is progressive and eventually the meds will stop or be less effective. You are so young…you need to research MVD and qualified surgeons.
Morgan, Calm down.I am very sorry about your diagnosis. You will learn a lot here.
First you need to see the neurologist. They will know what the correct dosage to start you on.
The good news is that you are right to be angry. I suggest you use the F word whenever you can. You actually got diagnosed which is amazing - since most of us don't get diagnosed for years!!! Also, you may experience periods of remission where you don't have any pain at all.
You will be angry for a long time is my guess because.... there is a lot of bad news.
First Pain killers don't usually work. The fact that your doc gave you oxy means he doesn't know how to treat it. TN works on an entirely different pain system then what you are used to. This is why a neurologist and a neurosurgeon are going to be your bestest friends and pain doctors.
second. This disease tends to get worse as you get older both in frequency and duration. You have a long way to go, hon.
third. the best drugs are anti seizure drugs and they slow all the neurons down in your brain and it makes it very difficult. Many people call them zombie drugs or stupid drugs or stupid zombie drugs. They can be debilitating but they work. The pain disappears. Your neurologist will try you on the drugs with the least side effects.
Make plans. You may not be able to drive until you know how these work. You may not know your name - these are powerful things. The first medication I was on I called my neurologist up and told her I wanted surgery. Surgeons won't talk to you, usually, until your third try on meds. Luckily (sarcasm) I am now on my third medication).
If you live in the US get every thing is writing or have access to it. You need to start a paper trail NOW. At some point in the future you will want to deal with Social Security disability and you need documentation.
But neurologist first. and ask for info here and lastly forget about spelling anything correctly while taking these meds,
When did you start having the attacks? And how long have you been taking the meds?
If you are really distressed with the feelings from all the meds I think you should go to emergency and talk to someone about it. Perhaps you started taking too much too soon.
I am also very sorry that you have to deal with any of this in the first place. But, the advice that seeing a neurologist is the first step. Particularly one that deals with TN. It takes time and patience to get the dosage right and even then it might not get you pain free. The Oxy makes me angry sometimes or maybe the fact that it does’nt help sometimes. Or the fact that I had to cancel a vacation due to a new treatment plan. This disease is complicated. Personally the dosages look a little high. You may need an intervention. I had success with the Gamma, but only for a year. I am now trying nerve blocks and getting relief in the V1, and half of V2. We are now going after the nerve in my jaw. See, told you it was complicated. Do not decide on a surgical procedure of any kind until you have read everything you can on it. I wish I had. I would have started the nerve blocks first. Take a deep breath, get some medicinal relief and read all the data and information you can here and elsewhere. Look at failed procedures here. Look at the meds. Read the stories. You might even find one like I did, and say to yourself oh my God he or she is “like me”. I wish you peace as you begin this journey. Best wishes.
Thank you all for your responses. I was having a terrible in pain/down night when I wrote this "discussion" and may have seemed a bit frantic. I had an appt with my neurologist today and have been diagnosed with Atypical Trigeminal Neuralgia and Tension Migraines. The ear pain I have she thinks may be unrelated and a different issue. She doubled my Tegretol to 600 mg a day with the intentions of getting me up to 1200-1800mg. If I can get to a point where I am going 2 consecutive weeks without an attack than she plans to slowly ween me off of the Gabapentin. She decided to keep me on the Oxycodone for the migraines and the ear pain. Not sure what this will do but only time will tell. I also have an appt for a consultation with another Neurologist in November for a second opinion that alot of my family has seen in the past for there neurological problems so I am interested to see what he will have to say. Thank you all again for your kind words. :)
Morgan, sorry you have to deal with this at such a young age. If you have not already done so, you might want to consider getting on FMLA. It will not pay you for missed time but will help protect your job while you deal with this. I know mine only protected me for 90 days but it seemed to help my employer know I was dealing with something serious. If you have not already done so, you might want to do a search for Atypical TN. Many people with that condition have posted positive results with tricyclic antidepressants, i.e. amytriptyline, nortriptyline for their headaches/migraines.
Thank you all for your responses. I was having a terrible in pain/down night when I wrote this "discussion" and may have seemed a bit frantic. I had an appt with my neurologist today and have been diagnosed with Atypical Trigeminal Neuralgia and Tension Migraines. The ear pain I have she thinks may be unrelated and a different issue. She doubled my Tegretol to 600 mg a day with the intentions of getting me up to 1200-1800mg. If I can get to a point where I am going 2 consecutive weeks without an attack than she plans to slowly ween me off of the Gabapentin. She decided to keep me on the Oxycodone for the migraines and the ear pain. Not sure what this will do but only time will tell. I also have an appt for a consultation with another Neurologist in November for a second opinion that alot of my family has seen in the past for there neurological problems so I am interested to see what he will have to say. Thank you all again for your kind words. :)