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Old 11-01-2018, 10:07 AM
Surreal Surreal is offline
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Join Date: Oct 2018
Location: Ottawa, Canada
Posts: 3
5 yr Member
Surreal Surreal is offline
Newly Joined
 
Join Date: Oct 2018
Location: Ottawa, Canada
Posts: 3
5 yr Member
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1. I'm not a specialist so I can't give you a definitive answer. Here's what I do know.
I started with type 1 and developed type 2. I never even knew there was more than 1 type until it happened.
Check online, there's tons of great info.
To sum it up, type 1 is episodes of shooting very intense pain that can last seconds, minutes, hours. It's usually set off by triggers, but can occur seemingly on it's own.
Type 2 is a non-stop constant aching pain that is not as intense a pain, but constant. With type 2 you can also get the episodes of shooting intense pain, often both at the same time.
In my experience, the first time my TN surfaced was the worst. It didn't go away for 3 years straight. But that's the thing, it did go away. Yes, it came back. It always did. Everyone is different, but for me, the severity/intensity was always different but similar.

2. I have personally never heard of anyone who has been cured of TN. You just get the pain under control as best you can and hope the episode goes away. Sometimes it goes away in days, months, but sometimes it takes years. The frequency of attacks very much depends on you and the type of TN you have. The longest I've gone without an attack was just over a year. When I had type 1 TN, the attacks happened every day throughout the day with different amounts of time between each per day. Yes the pain can seem like a 10, and then somehow it gets worse. TN can get worse through the years but in some cases in can diminish and become a bit more manageable. I think it gets a lot worse when you've tried all the medications and they stop working. Obviously this would make it worse.
Like I said before, for me I went from type 1 to type 2. I would personally consider this getting worse. But I also found a way of managing it so I'm not in pain. Not everyone is so lucky.

3.I am really confused about drugs. May please some one group them and describe a main characteristics (and bad side effects) for drugs used on different TNs? Maybe which to avoid for sure?
I would avoid opiates. I was given them very liberally in the beginning of my treatment. I developed a serious dependence and addiction. I found they did little for the pain but being addicted to it I didn't care. I wanted the "high".
The other medications mainly deal with your nerves and neurology (your brain) such as gabapentin and carbamazepine. They create some bad "mental fog". Your cognitive abilities are diminished. I felt like a zombie. I couldn't handle them.
I use Kratom leaf for my treatment. That's it. I haven't had an episode since. The downside to using Kratom: sometimes I'm constipated haha. It's my personal miracle drug. Depending which country you live in, it can be difficult to get.

4. Can TN patients have a "normal life" or not? No partys (no wine, beer)? No sport? No traveling? Etc.
Yes. People with TN can have a normal life. It's all a matter of knowing your TN, what your triggers are, when it's at it's worst, which medications/treatments help, etc. There will be times when you can't get out of bed or off the couch because you are in too much pain, but yes, you can have a normal life. It's very difficult to accept that you're in that much pain yet have to do groceries or walk the dog or whatever you do. You can still do those things.

5. Nope, no quick fix drugs out there. Yes it's possible to cope without drugs. It's VERY difficult but it's possible. I don't know anyone that would do this willingly but many people end up in this scenario after going the medication route and finding no relief. There are other therapies such as massage and physiotherapy that can help. I use massage, physio, and herbs (THC and CBD, and Kratom) for treating my TN. So far it's working. I can't say the same for any treatments or drugs out there. I had to figure all this out and make it happen on my own. Doctors only wanted me on those medications that ruin my mental capacities.

6.Most people who report getting TN after a dentist visit were having teeth pulled or root canals. This in no way means that this causes TN.

hope this helps. Keep in mind, everyone is different.
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"Thanks for this!" says:
kinjo28 (12-02-2020)