I've been seeing an orofacial pain specialist in SJOG Hospital in Subiaco now for quite a few months and he has diagnosed that I have Type II TN. I've had an MRI, which came up clear and was initially put onto 75mg Lyrica twice daily and now it's up to 150mg twice a day with no relief at all. I was also fitted with an interoclussal dental splint to wear at night.
He's now decided to try me on Nortriptyline and has also asked that I go to see a Consultant Psychiatrist! This has taken me quite by surprise as I really don't know what he can do to help me. When I asked my Specialist he said he will help with the medication, which is what I thought my Specialist was doing and why I'd paid him hundreds of dollars....
Has anybody else been referred to a Psychiatrist to help with Type II TN?
I have not been referred to a Pschiatrist, but I fight the medication as it sort of dulls your brain and I do not like that effect... so I tend to stay on a very low dose, and deal with pain .... lucky I have quite a high pain threshhold.... but when I start getting depressed, I know I have to up the medication... Maybe the Neurologist understands the effects of the medication and the depression that can come with taking it and with TN generally, so is pre-empting and getting you help early. I have just joined this group, and just found Australia & NZ members.... I am in S E Qld and trying to find a Neurologist who is at least interested in TN and can be helpful... hope your new medication helps.... GP
Hi Lynndy, I've tried Lyrica same rates as yourself, no response. I think Nortriptyline is related to amililtryptine ( spelling!) - you were trying it... any benefit? I tried amiltriptiline ( Endep) in increasing doses for months.... no benefit. But got a very dry mouth!
The psychological side of chronic pain is something you really have to watch. This is a difficult disorder to live with. It can become your life. Argh!! Cheers, Craig.
I went back to my GP yesterday as he had put me back onto Dothiepin, which worked for me when I was first diagnosed 6 years ago, but doesn't seem to be now. He told me to stay on the Dothiepin and gave me Tramil for the pain, until I can get an appointment with the Neurologist who initially diagnosed my TN.
I am very tired today with these medications, but my pain isn't too bad, from being 24/7 at a 6-8 pain rating, guess I'll have to sneek a few naps in during the day until my appointment in March.
No i havent been to see psychiatrist. My pain specialist at Southport put me on pain medication. Oxy 20mgs three times a day. i can't handle anymore of that drug as i get sick and itch all over. Then went to neurologist and he put me on Endep50. Take three tablets at night. (have put on alot of weight with this medication)My liver doesn't handle the anti seizure drugs. Plus i want to work as much as i can. Because I love my work:))Helps me to think outside the pain.
I photograph newborns,babies and maternity. Did do weddings but i cant postpone them. So only doing weddings for people i love. They would be understanding if i am suffering from bad pain that day. Did one on Australia Day at Gold Coast. It flooded and was so windy.When pain bad it goes down my neck to calvicle to down my right arm. Not good when I am a photographer.
I’ve tried many of the usual & unusual nerve type drugs. I have ATN 24/7 ( hate that expression) head pain & nausea, continually. About 3 – 5 out of 10. Argh! I have not tried Dothiepin… I’ll talk to my doctor. I tried Lyrica at the dosages you ended up on .. no effect. Expensive exercise. Lyrica is going on the PBS in March 2013. This will probably bankrupt the system!!
Pain relief… I gave the opiod endone a good run for nearly 10 months. I had my life back for most of that time – it was great. But slowly the side effects crept in and I had to stop. That was fun!!
A few months after that episode I went on Tramil, and this, at last, is the point of this letter! I’ve been on it about 14 months. These are my experiences for your information. Everyone is different & reacts differently. If symptoms persist, see your doctor and all that!! Taking Tramil in a dose of 150 mg, usually in the morning, helped. I then went on to 150 slow release 2 x per day. One in am, other around 2pm. This was good, but after about a month went on to 200mg x 2. ( 400mg in 24 hrs is the max recommended dose.). All went reasonably well for 4 -6 months, but not as good as the endone was. The benefit slowly declined. The last 5 -6 months or so I have been waking up with a splitting head ache. I believe this ( for me) was a side effect from the long term use of Tramil. And the usual pain and nausea was back. So I’m slowly coming off it now, and am down to about 150 in am, 100 pm. Going cold turkey as I did with endone does not appeal to me! Next week I’ll drop to 100 x 2. All this is in consultation with the doctor. He has no idea if the side effects I’m getting are related to the long term use of Tramil. But things seem to be improving a little. By that I mean the morning splitting headache. The rest is just the usual crap.
So all this is to let you know of my experiences so you’ve got some idea of what may happen. Unfortunately no pain killer is sustainable long term with out increasing the dose and side effects.
Now I take endone almost recreationally… I struggle as long as I can with the pain /nausea, then take a little endone… I do mean a little. One slow release 5 ( FIVE!) mg in the morning… sometimes just a half, with a an occasional normal endone tablet cut into say a half. Very small doses, just enough to ease things a bit. Some times I don’t take the slow release endone, but take a ½ normal, and then a couple of ¼’s as the day wears on. Doesn’t remove the pain, just sort of helps my mood a bit…. Which gets pretty dark. (When on endone properly I was on 200mg x 4 across 24 hours). I try to last 2 – 3 days between uses, hoping to maintain its effectiveness. Today will be my 4th day free… so this weekend I’m going to indulge. Even the anticipation of some pain free time helps.
Of course I’m still taking the Tramil, so you can deduce it’s really not doing much now.
All the best. You can probably understand if the above is a bit mixed up. I find clarity of thought and expression difficult with out HUGE effort because of this disorder. Craig.
Lynndy said:
Hi Craig
I went back to my GP yesterday as he had put me back onto Dothiepin, which worked for me when I was first diagnosed 6 years ago, but doesn't seem to be now. He told me to stay on the Dothiepin and gave me Tramil for the pain, until I can get an appointment with the Neurologist who initially diagnosed my TN.
I am very tired today with these medications, but my pain isn't too bad, from being 24/7 at a 6-8 pain rating, guess I'll have to sneek a few naps in during the day until my appointment in March.
Hi Lynndy, I've just started seeing a new Neuro because I was so disappointed with the hospital system. My last visit to the hospital involved a jumped up intern who basically told me to go away and self medicate. I suggested that might be illegal and got told to come back in six months. I did however take on board the other piece of advice he offered, and that was to go and pay to see a neurologist. I did. My GP found a really great neuro who has first hand experience with TN. She's brilliant, has TN herself and is fully functional. She's put me on Endep. It worked wonders. Can close my mouth and eat again. I actually ate an icecream on the weekend, though it felt like Russian roulette. First in a few years. It helps with sleep as well. For your neuro, Suggest you ask him why he thinks you need to see a psych, and if you don't like the answer keep looking. A doctor who is responsive to your need and will partner you in your wellness campaign is worth their weight in gold as far as quality of life is concerned. Persevere and you'll find someone :)