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I would like to "understand TN better"

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Old 10-05-2018, 01:45 PM   #1
WishBestAll
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Default I would like to "understand TN better"

Hi, when I read all those forums and google about TN it is very scary and anxious. And confusing too. Therefore I would be really thankful if anyone (more is better) would give me a feedback on my questoions below:

1. how many (basic known) variants of TN exist? I know for TN1, TN2, ATN but I really dont know/understand what are main differencecs among them and what are characteristics of each of them?

2. I am really not sure how this frequencies of attacks and intesity of pain works? Is there really "no one in the world" who got cured or at least better in time? Do everyone just getting worse all the time until unberable point? I know TN is progreessive so attacks are more frequent and intense of pain higher every next time. But does that mean that if, for example, one gets his first attack already with intense of pain 10 and the second attack in a week later with again intense of pain 10, will than next attack be sooner, let`s say in 3 days and intense of pain will still increase to "over 10 scale"? So one will soon end up in 24/7 unberable pain "for ever" ? Is it not possible to have some attacks more "mixed" regarding freq. and intense of pain (lets say if 2 attacks were close, could than the third attack be less intense and delayed sometimes)? My English is not that good so I apologize and I hope I am understandable. I would like to ask if is it possible to sometimes have stronger longer attack in present time and than some pause and than weaker and shorter attack in the future?

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?

4. Can TN patients have a "normal life" or not? No partys (no wine, beer)? No sport? No traveling? Etc.

5. Is it possible to cope with TN without drugs (sure one would need to make a lot of effort to do that with other "techiques")? Is there no "quick drugs" available <- to take pills only when attack occurs, no need to taking them all the time?

6.What are most danger dentist procedures for invoking TN?

Thank you very much in advance!
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Old 10-06-2018, 12:35 PM   #2
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Quote:
Originally Posted by WishBestAll View Post
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?
Mirapex is used to treat fibromyalgia, so I already was on it before. It started causing RLS/PLMD, then nausea.
Carbamazepine is an anti-seisure drug. It works good, but I developed itching and was told to stop.
Gabapentin was prescribed for RLS/PLMD in a large dose. A smaller dose worked better, but it eventually caused me nausea so severe I had to stop. It diminishes your mental faculties.
Amitriptyline works well but causes insomnia and after long term urinary retention and abdominal pain, and this becomes life threatening.
Lidocaine patch works well but some brands have stickum that itches. It doesn't stick well on the face and gets tangled up in your hair. It can be used as needed but it's annoying unless you shave your scalp.
These are anecdotal for me and would not affect everyone this way.
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Old 10-07-2018, 04:32 PM   #3
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Originally Posted by tied View Post
Mirapex is used to treat fibromyalgia, so I already was on it before. It started causing RLS/PLMD, then nausea.
Carbamazepine is an anti-seisure drug. It works good, but I developed itching and was told to stop.
Gabapentin was prescribed for RLS/PLMD in a large dose. A smaller dose worked better, but it eventually caused me nausea so severe I had to stop. It diminishes your mental faculties.
Amitriptyline works well but causes insomnia and after long term urinary retention and abdominal pain, and this becomes life threatening.
Lidocaine patch works well but some brands have stickum that itches. It doesn't stick well on the face and gets tangled up in your hair. It can be used as needed but it's annoying unless you shave your scalp.
These are anecdotal for me and would not affect everyone this way.
Thank you very very much on your reply and explanation. I really appreciate it. Even tho I am even a bit more scared of all those dangerous drugs now. But it is important to know "the reality". What kind of a drug is a Lidocaine (comparing to other anti-seisure & AD drugs)? Is it very toxic (side effects)? Are there any less harmful drugs? Is it possible to use some kind of medical drugs to suppress intense pain during the attack and than stop taking them (after attack)? Is it possible to avoid antidepressants (and similar anti-seisure pills) <- are all those anti-seisure (and AD) drugs the only way to deal with TN? What about patches and pills? What is more safe to use? Are all drugs available in patch or pill version, or that depends on type of drugs?
What happens if/when one can not take any of those pills?
I apologize for making even more questions, but I would really like to be as much informed as possible. Thank you once more and I wish you all the best!
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Old 11-01-2018, 11:07 AM   #4
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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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Old 11-17-2018, 10:35 PM   #5
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The dose of lidocaine is very mild, but long term use may keep you slightly awake no more than caffeine. Its basically a numbing agent.

New drug I use is diclofenac sodium gel 1%. Hardest thing about this is that it aerosolizes and makes my eyes water, but also clears my sinuses.

Neither are addictive or give you brain fog.
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