Hi Everyone, I think I’ve tried all the medications available without luck but am hoping there is one I have missed that I could try. Could you please tell me what med or meds you are taking? I am in the US in case that makes a difference. Thank you.
I have tried several medications and for the last 9 years have been on OxyContin and oxycodone they have worked the best I have also taken Topamax I have quit the Topamax because it was giving me kidney problems with stones but I take the OxyContin and oxycodone without a acetaminophen because with acetaminophen it can cause liver problems I don’t know if this would help you any but maybe it’s worth giving a try because like I said I tried six or seven other medications before I got on this good luck
I am currently taking Neurontin and Trileptal 4 times a day, and I take an Oxycodone to get over the headache I wake up with in the morning. If I feel a migraine coming or I just have a ton of shocks, I take Excedrin and Tylenol if I think there might be a possibility of catching the pain before the snowball turns into an avalanche. If the avalanche is here, then I will take another Oxycodone and sometimes add a hydrocodone. I am like cadworks50, because the oxy really does get rid of my pain completely for several hours. As for the acetaminophen, that comes with the Excedrin and Tylenol, but since I take it pretty much everyday, I don’t drink any alcohol. That was easy enough because the alcohol has basically become a trigger for me. Last but not least, I also use cannabis. I haven’t been able to obtain any legitimate medicinal cannabis, but a decent strain can help ward off a migraine and reduce the frequency of the shocks. I’ve heard Charlotte’s web works for others, and they even have a cream you can put on your face, since it is nice to be 100% coherent and not on cloud 9.
I don’t want to patronize, but there are things we all need to be reminded of:
- Make sure you stay hydrated.
- Make sure you get sleep.
- Make sure you meditate each day (scientifically proven to help us deal with pain, I recommend John Kabit-Zinn’s book and guided meditations for a secular one that focuses on dealing with pain)
- Make sure you are eating as healthy as you can (ie, lots of plants, lots of good fats, adequate protein, not a lot of processed food)
- Make sure you try a medicine combination for at least 6 weeks before you decide it doesn’t work for you.
- Exercise if your pain allows
- If you do take opiods, remember to find the lowest possible dosage. Not only is becoming addicted easy, the more you take, the less efficacious it becomes. In the right doses though, it can be extremely efficacious.
- Most importantly (for me anyways), maintain a wide perspective: remember to be easy on yourself and don’t beat yourself up because you cannot do things you used to be able to do, remember the things that are positive in your life, remember you have loved ones around you and you have friends here supporting you, and talk, talk, talk, talk with your loved ones and with all of your doctors (if your pain allows of course. If talking excacerbates your pain, bring a notebook with you everywhere to write down what you want to say).
Anyway, writing those extra things not about your meds is as much for me as it is for anyone reading this. I am hard on myself too often, and I need to understand more that it is okay to not be the “star” you once were. You are still a star, just work on shining your light in a different way.
Hope this long-winded message helps
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I agree with willimus789 that talking to your loved ones or even writing it down helps a lot I have several notebooks full of how I was feeling from day to day. At first it was a lot of help to write everything down in my notebook’s then I started talking to my kids I did not want them to know how much pain I was in but then a year after my MVD (brain surgery) I finally started talking more to my kids about the pain and other problems like not being able to do what I used to. My Kids are adults and I do have grandkids and they all understand when I’m in pain and why I can’t do some of the things that I would enjoy doing with them I still write in the notebook’s now and then and it helps a whole lot it was either writing notebooks or see a psychiatrist or psychologist to help with how I felt. Being against psychiatrist or psychologist I saw one after my first husband passed away when I was 23 and they are very helpful if that’s the route some people need to do but I did find the notebooks were almost as helpful at this time
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I also agree that talking to your loved ones would help a lot .
But … how do you handle the reaction of your husband when you are in constant pain ( TN 2 - MS related ) and he answers : well, you have complained enough about this , by now I know it already !!!
And for the ( adult ) children : one of them never asks anything and to the rest of them you decided te stop " complaining " meaning you try to never talk about TN and what it does to you !
Sometimes I really feel depressed about the pain that is always there and I certainly feel depressed about never being able to talk about how I feel !!! ( LOL )
For every one who reads this : have a good 2018 with minimal pain and the correct help from everybody around you and the correct medication !
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Omieke, it is so hard. And so much of movies and TV just tell everyone that grit and determination are enough to overcome anything. Have cancer? Just believe and never give up. Lose a limb? Just work hard, overcome your pain, and be a ParaOlympian. Come from a home with domestic violence? Know in your heart you are right, overcome your trauma, and start a good family. IT’S INSANE! So many people with these and our problems are bombarded with messages like this, so we ourselves get depressed, and then some of our loved ones (hopefully not all) think we are just not being strong enough. After all, they see nothing physically wrong with us (even with my face swollen up like Quasimodo!). So it must be we are weak and complaining. Try to remember deep in your heart, you are not your pain AND IT IS OKAY TO ASK FOR HELP FROM THOSE AROUND YOU. Again, IT IS OKAY TO ASK FOR HELP.
I’m sure your husband and your children love you, and I’m sure they don’t want to see you in pain. No one does, and since they aren’t the ones experiencing it, they are reacting like many of us do when we started getting little shocks that weren’t too bad in the beginning. THEY TRY TO DENY IT. They want to see you as their beautiful, smiling, happy wife and their caring, loving mother. It is hard to reconcile that identity they have for you with one that is in pain. Of course it is hardest for us, but it can be difficult for them.
I don’t have kids, and I’ve only been married for a year and half, so you don’t have to listen to me. But my mom and sister also both have chronic pain conditions (really makes me wonder if it is our genes or the water), and my dad can be dismissive at times. But the more they talk about it, the more everyone understands.
It can be hard to talk about it without complaining, and sometimes we need to complain. But I find just saying, “Oh, hold on please, I’m having an attack.” or “I’m so sorry, I can’t come/do that/be there/give a shit right now because the shocks/nails/vice is back”. The more polite, the easier it is for them; and if you are polite AND say it with your eyes closed in obvious pain trying to breathe through it, it helps them see. I know, I know, we shouldn’t have to be so polite in a moment of such pain (if they stub their toe they get to curse like sailors).
You could also have them accompany you to the doctor, and have the doctor explain what is happening. Have them do some research with you, so they can read that this is also known as the “suicide disease”. Show them your thoughts here!
I STILL judge other people’s pain, even though it is obviously impossible to know what is happening in someone else’s body! On my good days after my oxycodone when I am pain free for a few hours, I catch myself thinking, “look at this wimp, or why is this person so tired” and then I’m like, why am I so cruel and why would I think that when I know myself other people cannot see my pain? I am getting better, and I catch myself mid-thought, and then I remind myself, “You cannot know what that person is feeling, you have no idea what their day and even their life has been like, and the only TRUE thing you can do and think is that you don’t know, so be kind. Just be kind, because someone could have it worse than you.”
Anyway, another long rant, but I also wish everyone a 2018 with As Little Pain As Possible! ALPAP!
Hi Willimus,
Thank you for your answer and your support .
Now I’m more sure than ever that talking/writing about your pain helps !
And indeed , people around us do not understand what is going on - and probably get bored by hearing the same complaint so often !
Thank you and indeed ALPAP !!!
In terms of talking about the pain, I have found giving a comparison often helps. For example, my mom had a sciatica flare up several years ago and when I told her to take that pain, put on one side of her face and leave it there non-stop for six months it created a whole new level of understanding. Not that she wasn’t understanding and wonderful to start with! But it seems to help if you can give people something tangible to compare.
When talking to my husband I hit on the explanation that it was like a red hot nail that never cooled off was being pounded into the side of my chin all day every day. Hammer blow after hammer blow… that seemed to connect with him.
Things like that seem to work better than saying how much you hurt on a scale of one to ten or something.
I’ve kind of given up talking with my husband about my pain, other than saying it’s time to go home from a party or activity or whatever, because the pain has become intolerable. He always responds with exactly the same “I’m sorry”, in the exact same meaningless tone of voice. I get that he doesn’t know what to say, but I feel like he doesn’t even try some times, just kind of answers by rote, so there isn’t any point in talking about it. If I have a good day, I’ll say so, because he likes to hear that.
Other people really just don’t “get it” at all. When I try to explain, I can see the complete confusion in their face. Or maybe they just think I’m a nut? Very, very few have even heard of trigeminal neuropathy, much less atypical trigeminal neuropathy. I actually yearn for the day that I run into someone with the condition in real life–it would be such a relief to have someone that really “got it”!
Hi Ziggy,
I’m glad to read from someone who also has atypical trigeminal neuropathy . I would love to read your story and what to ( probably ) expect .
With me this all started with TN . With Tegetrol under control after a few months .
Then after seven months, with only 200 mg /day, the ATN started . At first more or less under control with more and more Tegetrol ( now 2 times/day 400 mg tegetrol ) it is getting very bad . Every day same thing : in the morning it is not too bad but it gets worse later on in the day and by 16 - 17 o’clock it is totally overpowering .
Could this be because I’m getting tired ? Or … ???
I have NO idea !
In the beginning , while having TN, I read about ATN and I thought : oh, ATN can’t be as bad as TN but now I would be so happy with just a couple of hours with no pain at all ! Although ATN or TN , we all probably think this !!!
I feel like this is slowly getting me depressed …
I also feel I yearn for the day that I run into someone with the condition in real life - so I could ask so many questions and my family can start to understand what is going on !