I was diagnosed almost 5 years ago. This past fall, I started a new med. regimen after I had an awful flare-up. These new meds took my pain down to a 3-4 most days. The last two months have been awful. My pain level is back up to 7-8 with many back to back shocks pushing the pain level to a 10. I am just not sure what to do now. I take Trileptal 600 mg twice a day, Baclofen 10 mg three times a day, Nortripilyn 50 mg at bedtime and I use Lidoderm patches. I also take extended release Morphine 30 mg. twice a day and I have an instant release Morphine 15 mg. for breakthrough pain. I have TN 1 and TN 2 and it is bilateral. I also have occipital neuralgia so most of the time it feels like my head is going to explode. Any suggestions as to what I should do now? I have had occipital nerve blocks and trigger point injections in the past. Sometimes they help, other times they make things worse. Feeling pretty hopeless right now...
I have no idea what to suggest for you other than a really good neurologist, but I did want to say tha holy smokes you have been through the ringer! I thought just having one side of my face in miserable pain was bad, but you have it all over! I really hope you find some answers and quickly! Are you a candidate for any sort of surgical treatment?
Hi Karen
Wow, that’s a headful of pain and misery. Have you tried adding gabapentin to your mix? I take it along with trileptal and nortriptyline and a bit of tramadol to get by.
There is always something to hope for.
Like HCal I’m wondering what your neurologist says. Do you have a treatment plan?
Can you afford to go to something like a shiatsu treatment? I’d have one every week if I had the $$$, but I go sometimes and it is a lifesaver. I just can’t let the therapist touch my head. But the treatment does calm the rest of my central nervous system.
Let us know how it goes.
Peace and Kindness
Bellalarke
Last resort for me in between neurologist visits is quiet and hot or cold packs depending. It seems your having a lot of pain good luck with your new treatment. I think your body is just adjusting. I've been to ER 4-5 times telling them my head is going to explode and a ct scan later, they send me home. I hope you feel better
Wow, i can not imagine taking all that medication. I am a light weight when it comes to meds. I do understand the desperation though. Steady the course and listen to your body. Calm and peace to you friend.
Are you a candidate for anything like the Balloon proceedure or MVD?
That is a LOT of meds to have breakthru pain - you should not have to endure this --- if you don't have a good neuro - look under the doctors tab
Keep Posting!
Hi Karen,
Good to see you, although I sorry to read you’re struggling with pain control.
First, there’s always hope! I know it doesn’t always feel that way though…((( hugs))).
I think you need to sit down with your Neuro and re-evaluate the meds.
It’s super frustrating, I know.
Have you ever tried Dilantin, Tegretol, Neurontin?
Baclofen is used to boost the effectiveness of Tegretol, does it do the same for Trileptal?
I never used morphine or any opiate therapy as the two times I tried it didn’t touch the pain and made me feel “off”.
It’s a struggle to find the right meds and magic dose that works…I hope you’re able to get an appointment soon and find relief.
I always use a heating bag I microwave to help take the edge off.
(( hugs)) Mimi
Thanks, everyone for you replies. I was able to get in with my doctor this afternoon. He increased the Nortriptilyn to 75 mg at night. He also wants me to go back to the pain mgt. clinic and try a trigeminal nerve block. I haven't been there in a while since I was having success with my meds.
A couple of things...
Baclofen does boost Trileptal.
Morphine has been a huge help for me. I know opiates don't help everyone, but for me, it usually helps a lot.
I also use a heating wrap. It helps me also.
Forgive my ignorance, but what is shiatsu treatment?
Also, from what I have read on this site and from "chatting" with others on here, I do not think I am a good candidate for MVD because I have TN1 AND TN2 and also because it is now bilateral. Also, the MRI I had done a few years ago didn't show any kind of nerve compression. I have not seen a neurosurgeon about this as any type of surgery scares me to death. I have read so many people who have had surgery or other "major" procedures done and did not have success or were made worse by them.
Thank you all for your encouragement but I am still struggling with seeing the hope in all of this. I am usually the one saying you have to take it one hour, some times one minute at a time when dealing with this monster. Maybe it is the pain, absolutely no rest from the pain. But the thought of doing this, dealing with this for the rest of my life, I just don't have the strength. I am so tired of fighting this thing. I want to be done!! This was not what I wanted my life to be like.
I am sorry. I know that y'all are the only people that understand what I am going through. Family, friends, they try to understand but they don't. I am thankful for you all!
~Karen
I’m so glad your got into your doctor today because waiting takes its toll too.
I mentioned shiatsu because I saw you in the fibromyalgia group. I have fibromyalgia too, have had it since '95 and had been more or less successful managing it since then…until November 5th 2009 (oh yes, the memory of the first attack is indelible). I know that the two feed off each other and play havoc with our central nervous systems. Shiatsu is a type of Japanese massage that uses pretty much the same points on the body as acupressure but done with fingers and a bit of muscle manipulation. It usually makes me feel like a million bucks, for a bit anyway. I sincerely believe it does help the whole CNS. I actually practice a bit of it on myself. After having it a lot you can more or less figure out what to do but it’s not the same and you can’t really reach all the points along the spine. But I lie on each side and do as much as I can. Often in the morning before getting out of bed and on really bad afternoon when I fell like I’m not going to make it through the day.
I have actually found that whopping doses of gabapentin helps with the fibro pain - even though it leaves my poor brain running like molasses.
I don’t have a child to look after, mine are grown. I’ve thought about this and actually don’t how I would cope if I had to look after little ones. Although I guess I’ll find out a little- first grandchild coming soon:) and I can hardly wait to be with him. The cry might send me into hiding though…
This is not what I wanted the last half of my life to be like either. I really have such compassion for those younger than me though. It is a hard road with some days of nothing to look forward to but pain. The next day might be better though. />
Surgery is very frightening, that’s for sure. I am on a list to see a NS. If he thinks it’s an option, I am going to go for it, scared as can be.
Yes, we do understand. Come back often. This also helps the CNS to settle a bit.
Hug for you
Bellalarke
Karen…
I have bilateral TN.
Right side TN 1
Left side TN 1 & 2… No compression seen on ANY mris.
Just had MVD last week, as no other option. TN became med resistant.
The intensity of my pain this past year was through the roof, everyday…no end in sight.
I had to take a leap of faith. Since mvd no TN pain left side. 2 blood vessels found compressing on top of my nerve and one large rarely placed vessel underneath.
Its really early days for me , I’m fully aware that the pain can return at any time, the reality is there is no cure.
BUT, I refuse to believe there is no hope.
Read my “7 days post op thread”!
Especially the part about the day before my surgery.
Having TN sucks, not just because of the horrendous pain, but because there’s not enough research, solid treatments or medical professionals to help us in our decisions. We know more than they do. But together we will help each other and be there for one another.
(((( Karen )))), I completely understand.
Tomorrow is a new day. Don’t give up, thinking of you…
Mimi xx
Hi Karen, my heart goes out to you. You must feel completely overwhelmed and discouraged. Wish there was something I could do from afar. Feel free to message me anytime if you need someone to vent to, ok? Hang in there and don't give up hope. We are here for you. (((HUGS)))
~ Vicki
Wow, that sentence you wrote "This was not what I wanted my life to be like" really struck a chord with me, Karen. That's exactly how I feel, too, and I I'm sure almost all of us feel at times. It's completely overwhelming to imagine a life with TN! I think you're so right about taking it 1 hour at a time. I bought a handmade wooden sign recently that says "breathe" and I put it where I can see it from my "perch" on the couch. It helps calm me when I feel the pain creeping up. I'm not sure it would help much if my pain were a 10, though, honestly.
Your in my thoughts and prayers, Karen. xo!
Karen said:
Thanks, everyone for you replies. I was able to get in with my doctor this afternoon. He increased the Nortriptilyn to 75 mg at night. He also wants me to go back to the pain mgt. clinic and try a trigeminal nerve block. I haven't been there in a while since I was having success with my meds.
A couple of things...
Baclofen does boost Trileptal.
Morphine has been a huge help for me. I know opiates don't help everyone, but for me, it usually helps a lot.
I also use a heating wrap. It helps me also.
Forgive my ignorance, but what is shiatsu treatment?
Also, from what I have read on this site and from "chatting" with others on here, I do not think I am a good candidate for MVD because I have TN1 AND TN2 and also because it is now bilateral. Also, the MRI I had done a few years ago didn't show any kind of nerve compression. I have not seen a neurosurgeon about this as any type of surgery scares me to death. I have read so many people who have had surgery or other "major" procedures done and did not have success or were made worse by them.
Thank you all for your encouragement but I am still struggling with seeing the hope in all of this. I am usually the one saying you have to take it one hour, some times one minute at a time when dealing with this monster. Maybe it is the pain, absolutely no rest from the pain. But the thought of doing this, dealing with this for the rest of my life, I just don't have the strength. I am so tired of fighting this thing. I want to be done!! This was not what I wanted my life to be like.
I am sorry. I know that y'all are the only people that understand what I am going through. Family, friends, they try to understand but they don't. I am thankful for you all!
~Karen