I went yesterday morning when I found myself in tears of frustration because of the word thing.
To be fair, trileptal was a good drug in lower doses until my disease caught up with it and can’t tolerate dosage
I am still on a small dosage, and cannot get a hold of my doctor to save my life. The phones in these hospitals are from the 1980’s and often go to voicemails that seem to never get checked
today I have horrible nausea, too. I think this med no longer is for me, but I don’t have any others to use yet
Hi Melissa-I just want to give you a big hug.How awful.The psychological part of this illness just adds to the burden.
I usually give them a paper with it all written out and the names of some of the big doctors that I have seen.And I bring all my notes so that when they ask a question that they are pretty sure I will be stumped by-I pull out the answer.
Can you try marijuana at all?The stuff I use at night is oil that really help to knock me out and stay out for the night.And if I am in super pain I take it during the day.Because sleep is better than torment.
Sometimes I just walk around the hospital and check in with all the doctors receptionists when I am downtown.Saves waiting for the phone call that might not ever come.
As awful as it sounds,being in tears because of the problem is a good thing.When you are at the hospital.
I hope all the words come back to you soon(you are excellent on this board) and that you find something to relieve the pain.
If there was an essential oil named after me I would use it.
I would imagine all the lemon balm fairies working hard to figure out the problem.They can get into little tiny spaces ,travel through your ear to find out the problem and fix it with their tiny fingers.Sewing with a wee tiny needle and a piece of spider web thread.
Those little fairies are going to help you Melissa.They can even whisper the right med for you in your doctor’s ear.
I spent all day trying to reach my doctor, or ANY doctor because I have really been having trouble speaking even more. My writing has been effected but not near as much as my speech. Eventually I got a neuro doctor who works alongside my doctor, and she told me to taper off Trileptal/oxcarbazapine completely and emailed me instructions on how to do so, and then recommended that I get on Amitryptaline for the time being (because I am not sensitive to it and it worked before.)
My neuro called after that and a surgeon he consulted doesn’t think the cyst in my brain is the cause of my trigeminal neuragia, they think it’s caused by the nerve with the vessel wrapped around it. He wants me to speak to a surgeon anyway because of the options available.
He wants me to only go down to 300 mg of the trileptal/oxcarbazapine and I argues about it. His reasoning is that the side effects may end up mild at 300mg, and then we can supplement with something like Amitryptaline.
I don’t know. He said I can take his advice or the other doctor’s.
My brain isn’t working right, and these all seem like big decisions right now. I really wanted the drug completely out of my system after this experience. I have kept jumbling words and it’s really stressful.
It didn’t help that he giggled when it happened on the phone! Aphasia is crazy!
PS my doctor thinks that it’s not the medicine being less effective. He thinks it’s the disease progressing.
I am not taking any of this very well. I cried earlier and I am already tapering and now I’m getting pain as well as a stress headache. I can’t wait until it’s time for bed. If my bf was not here, I would just call it a night right now. (it’s 7:30 my time)
Oh my dear girl-It’s not just that we have this bizarre thing -it’s all the
peripheral s+++ that surrounds it.Someone is having major brain problems
and the doctors are telling them to sort it out?
Talk with your daughter.
I think go down slowly-don’t shock your system.I tried getting off the
effexor too fast-I hated it-and ended up with problems.
If your feeling is to start the amitryptiline then go for it-you have the
doctor OK.
You are the one in pain.
Just please don’t shock your system .You saw how it was with trying to get
a hold of anyone.
And your dear dogs don’t need you in hospital-if it can be avoided.Let
alone your daughter.
I can’t remember-they did tests to make sure you didn’t have a wee
stroke,right?
I went in once and complained of dizziness and the different sides to my
face and after a bunch of tests they gave me a CT scan to be sure I did not
have a stroke.Long,long wait-but it was better than rewriting my will again
while I lay in bed panicking.
Wishing you a pain free night.
sorry
I meant CATS
way past my bed time-had to put together a lenticular spiderman puzzle-you
know all wiggly-to make sure it was all there.Fried my brain and it is
meant for 5 year old kids.
So never mind me mixing up cats and dogs
g’nite
Oh dear gussy girls. We are all a mess. I think we know ourselves better than the docs for sure. I just want to give gentle hugs to all of you. Melissa Elaine and Steph (I haven’t met you yet). I’ve had a horrible flare up and how I drove 3 hours back to my daughters In one piece is a miracle. The trouble I had with non returned calls was with the pain center. I will never do that again. I have to admit this… I read all the messages and posts and since I only have my phone to use I tend to forget what I read. And then the words I need to use and say won’t come to mind and come out uuuugggghhhhhhhhhhhh. I’m so sorry the crying hurts. It does me too.
I’m laying on my bed with one of my schnauzie boys Jeter as in Derek Jeter the NY baseball hunk and how could I ever have thought to rehome him. He depends on me as much as I depend on him. Tomorrow is a new day and a day to go to go and soak up Gods love. I’m so glad for all of you! Time for lights out. Haaaaaaa. At 8:30. I want the medical marajuana! Night everyone
Kristy I always have to play phone tag with the neuro and all the other doctors involved in my care other than my primary care doctor. She has an online message system and answers the same day! I’m on a “wait list” for the pain clinic (they CAN prescribe marijuana) but I have heard nothing yet. I am glad you are keeping your pups! Animals give us purpose and they are easier to make happy than humans!
I am tapering off the oxcarbazapine and it’s actually more awful than adjusting to it. My head feels like a balloon (I’m down to 600mg a day right now) and I have this raging headachy fog. Not as many attacks as I thought I would have and they’re def more intense but not unbearable. I am starting to think the oxcarbazapine wasn’t really working for me and my Dr. is wrong. Although I feel crappy most of the day, and out of it, when I am not feeling like crap I feel more lucid and I am wondering if I exchanged my TN attacks for being really, really out of it. My breakthrough pain is worse but not as bad as I thought it would be – or rather, it’s been bad no matter what level of the Trileptal I am on.
I see my Dr this week and I am going to tell him I want to be tested for MS. I have symptoms of MS that he has never asked about, including the nerve problems in “other places” and I went and looked at the system list and I have 6/10 symptoms. I think a lot more things should be ruled out before I schedule a brain surgery.
I got the sublingual B-12 and it’s actually helping with energy I think, but I have no idea if it helps with the pain at this point. I have breakthrough pain and now odd withdrawal headaches and stomach pain. I’m in a huge fog, but it’s better than not being able to speak. I haven’t had a bad TN attack yet but the bad ones are usually only once a week. So we’ll see.
I know I just sent that message 40 some minutes ago but I just had an awful attack on BOTH sides of my face, not just the right side. I was diagnosed as type 1 and now I think I may have type 2. They are also stabs. Not much else to say except I called my doctor and I am in pain and I don’t know what happens next; I see him in 2 days
Hi Melissa. You have so much going on. I like the online with dr question/ answering system. I’m so surprised they haven’t looked closer into MS. I would think your MRI would have shown lesions.
I’ve been in bed all day except to get my medicine. The shocks and stabbing pain is quite unbearable and I so feel for you. Unpredictable darn it.
I drank cold water today and didn’t have my straw in the right place. That was not good. Praying you will get through your pain and breathe through it. Blessing and hugs. Kristi
Good morning Melissa, Ellen and everone😊 I hope everyone is doing okay. I know you had a hard time last night Melissa. I’m trying my best to stay out of bed if I can. I’ve only had one shocking episode today and that’s enough. I’m starting back on my other meds I had to stop when I lost my insurance from work. I’m so sensitive to meds I hate it. Just checking in. Hugs to everyone
Good morning all.Yesterday was a crying day for me.I was just devastated when the SPECIALIST told me to take extra strength tylenols.
Bad enough when they don’t help ,but coming up with a suggestion like that is a slap in the face.
Decided to start with the trileptal last night.Took 150mg.
Tooth was not as burny this morning and I could have my coffee before eating a handful of drugs.
However,I now have a headache-not sure how that got through all the drugs.
Wishing us all a better day
Oh sweet Ellen. I want to throw the bottle of "extra strength Tylenol " at that dr. Uuuuuggg. Glad you had your coffee. So did I and it was delicious not too hot not too cold. Good grief. Sounds like goldielocks in the storybook for kids. Hoping you have a better day and some sleep. Hugs. Kristi
I made it! The doctor from the ER who gave me directions on tapering off of Trileptal had no idea what she was doing. You’re supposed to taper in 3-6 weeks if you’ve been on it for almost a year, not 6 days like I was attempting. Never been on opiates for very long but I swear that this taper was similar to the opiate withdrawal I’ve heard about. My stomach felt like it was eating itself, and those attacks were no joke. I was sweaty, miserable, and my head felt like a balloon!
Lesson learned: don’t try to taper without talking to your main neuro! I was more miserable than ever.
I am happy my regular neuro stepped in when I called him and halted the taper, telling me to do 300 mg 3 times a day instead of 300 twice a day. I also took more of my Tramadol stash (not sure what I will do when I run out of it! I don’t plan on asking the other doctor who gave it to me for a refill!)
Eventually, yesterday evening I started feeling MUCH better.
Neuro thinks the pain on my left side was “referred pain” caused by severe inflammation on the right, probably made worse by the taper. I was actually only getting pain behind the eye, there, so maybe he is right but we are going to “monitor” it. I see him tomorrow! I will bring up MS but I think you’re right about the lesions.
Ellen! Before I was diagnosed I had a doctor at the ER tell me I had a sinus infection. She gave me percocet and it didn’t make a dent in any of the pain!! Also had an ENT laugh at me when I thought it was a tumor. The mistakes some of these arrogant doctors make are unreal!! I do kind of have a tumor – it’s a cyst I guess but those are very similar. I would love to go back to him and just wave an MRI at him lol. These doctors don’t have all the answers and our face pain issues are just so rare.
Dr wants me to do a low-dose of Trileptal and start gabapentin. We’re going to do that tomorrow I guess.
Because of what is going on in the US, I may lose my health insurance next year. So we are going to take the step of seeing a nuerosurgeon while I still have insurance. It’s very scary, but I would rather be scared than face this disease without insurance.
Oh Shoot Melissa
I never thought about the insurance thing!
I really hope you feel better.My cat hates it when I am sick-but when I spent yesterday crying she left me alone.Or I could not hear her over the sobs.Some kind lady on the bus was asking if I was OK -as the tears poured down my face on Monday.I had already walked 10km and could not walk any more.She was an angel-as are you.
After your surgery and my miracle cure we will have a wonderful time just enjoying nature.I can see hummingbirds buzzing around already.
I started the trileptal last night.just 150mg.half a pill
This so sucks
We should have a pill exchange
Things got very bad for me again, I am suddenly on 1800 mg of gabapentin and 1200 mg of oxcarbazapine after a few failed experiments.
I went for my second MRI/MRA the other day. I guess I find out the results this week.
The pain doctor I was referred to doesn’t handle neurological conditions, but he does handle shoulder pain, so I got a shot of cortisone in my shoulder and a diagnosis of bursitis. So I have to handle that and start doing home exercises for that. It stopped hurting as soon as he gave me the shot, just a few hours later.
I’m kind of depressed and trying to do a bunch of housework and work-work while I can. I am tired, and my significant other is working way too much, too. I can’t cook dinner because the steam and the heat from the oven give me attacks. So he has to do that, too. (He told me that in the spring, I can cook us “dinner salads” lol. )
So I am nervous about seeing the surgeon next week. I see my neurologist tomorrow, and I’m embarrassed to go. I spent time sobbing on the phone at him last week, and I think he feels like I am crazy.
Hi Melissa
I am so glad you are still here.
We the walking wounded.
Do not be nervous.Your neuro now understands how much all of this is getting to you.
I am glad the cortisone shot worked for your arm.maybe some of it will seep into your face and make it better -at least for an hour or so.
I gave up on the trileptal after like 4 days-I was feeling itchy and I did not like it.I am now not on tegrotol ,too.I lasted 10 days on that but on a baby dose-100mg-and I even cut it down even more.But the constipation was so bad and I came up with these weird sores on the right side of my body.Not sure if it is related,but no way can I take the pills until they go away.
Have started at the beginning again-went back to a dentist pathologist to try and get him to make my tooth respond when they put cold on it.He could not get the tooth to respond with the cold stuff he had and he will try with colder stuff next week.
Let me know how the neuro visit goes tomorrow.
Hugs
Sorry for the late response. My memory is out the window. Just gone, gone gone with this gabapentin. I bought two pairs of the exact same shoes online last week because I forgot I had ordered them. They wouldn’t let me cancel bit they switched colors. Haha but things could be worse. Just got home after taking the wrong bus so I had to take two more buses and a subway train to get home.
They say the MRI definitely shows that the vein is wrapped around it. The vein looks worse actually – longer, and it is wrapped like a vine. So the surgeon will probably be recommending surgery. I see him in two days,.
The wind has been awful here. 50 mile an hour some days. I run with my boyfriend to the car and we go grocery shopping where there is a garage but mostly I don’t get out.
I haven’t been to the dentist in over a year. Last time I went I was not diagnosed and they did gum scraping. I had attacks for over a week.
If I get brain surgery (vascular decompression) then I am waaay overdue for the dentist. Right now I am too scared and I am just flossing and brushing and hoping I will be ok.
Hi Melissa
so glad you are still around.And moving forward.And you need to let us know about your appointment with the neurosurgeon.
You are awesome and you will be even more awesome once you get this dealt with.
But promise you will come on the board and let people know that there is hope.
\Happy International Women’s Day.
I bought 3 pairs of Skechers from an outlet sale.I hope they are not all the same.Basically I hope they fit.
Ellen – you are awesome too! And so is Kristi, wherever you are! I am thinking of you both and hoping things get better for all of us soon!
Happy International Women’s Day
At least I get to say I know international women now!
Gabapentin had given me raging headaches but after 2 weeks on the high dose those have settled down. I am still getting mild ones but if you look at the drug label it says headaches are a side effect. Geez, all the side effects are just crazy.
Coffe was the first thing that really made my TN worse but I am glad I can drink it now, mostly. My biggest triggers are heat from the stove and wind.
Trileptal is good when it’s a low dose.
I hope your Sketcher are great!
I promise will not just dissapear if my TN is “cured” . When you live through brain surgery, I am pretty sure you can conquer anything! I just figured that one out the other day. It freaks people out when I tell them about my disease and the brain surgery, but once it’s been DONE I will sure have an amazing story to tell.
All of us are survivors and we all will have amazing stories to tell when we feel like talking
