I just went up to 1800 mg of Oxcarbazapine on Friday night and I’m stumbling a little when we go to places like the grocery store.
Also having aphasia (can’t find the right words, replacing things like “plan” with “pain” etc.
This isn’t new to me – it happened when I first got on this drug – and it happened the week before when I was titrated up to 1500 mg
So this has been happening for 2 weeks and it’s not getting worse but it’s not getting better.
I am wondering if it’s time to ask the Dr to help me try a new drug. This drug has also been interfering with my birth control (depo provera) which I take for PAIN not so much for birth control.
Hi Melissa
I have a bottle of the stuff but my doctor said to get off effexor first.I am so nauseous and dizzy that I had to take half a capsule today(don’t ask)Was so out of it yesterday that I was saying mean things to a Police officer.I don’t know.It seems every new drug makes things more complicated.
Good to know what side effects there are and I did not know birth control pills could be used for pain.
I guess I was confusing in that post! The depo provera / birth control helps with endometriosis pain not face pain (and there’s evidence it may increase nerve pain, so I dunno how long this will work.)
Yeah, every drug DOSAGE makes things more complicated, too. I hate the idea of trying a different pill but I am sick of the oxcarbazapine’s side effects (nausea, constipation, almost stumbling, aphasia) and I am hoping the next med we try is gabapentin – i’ve heard better things (not great things but still)
That sucks about saying mean things to a police officer!
I am looking for relief lol but I have 3 chronic conditions, so I am not sure what to do. Thank goodness I finally got referred to a pain specialist. But of course that will add a bunch of other things to my life
Hi Melissa
Thanks
You almost had me going to my doctor for birth control.A 60 year old-post
menopausal woman.!
I have been on gabapentin for about 8 years.
I was put on in it for hot flashes by my gynecologist.
Then I developed back pain about 4 years ago after being knocked down by a
dog and the pain clinic guys upped the dose a bit.
The only effect I get from it ,is a good knock out drug for sleep.No side
effects that I know of.I am only able to take 1300 mg a day-otherwise I
fall asleep all the time.
I sometimes wonder whether being on the drug masked some of the earlier
symptoms of my facial pain.Maybe it has been going on for years but was
hidden by the drugs I was taking for other stuff.
I felt bad about the cop thing.I was too nauseous to get on the streetcar
so was walking and he was supposed to get me to the other side of the
street but was texting and did not direct me across the street so I ended
up in a dead end construction zone.And I was so sick.And I was walking
about 8 km at that point.
But I should always try and be nice.I just thought I was going to vomit at
any minute and time was of the essence.but he did not know that.he has
probably put me down as another nutty old lady.
I totally know what you mean about other meds masking symptoms before diagnosis… I used to be on Klonopin for anxiety & another med for depression and I am pretty sure I had TN off and on back then (I remember weird sensations that are close to my current breakthrough pain, not stabs but sparks and an odd sandpaper feeling…that I would feel at night and think I was going crazy…)
Don’t feel bad about the policeman. I’ve learned pain makes us a little angry sometimes lol or at least grumpy.
I have been bad at least twice when there were pharmacy & insurance problems and couldn’t get my meds fast enough! I always ended up apologizing and luckily pharmacy people deal with it all the time. But now I look back and I’m embarrassed.
Pain changes you, but I think you basically goes through the stages of accepting it and somewhere in there is SUPER FRUSTRATED lol.
Police are used to grumpy people, too. So just be nice the next time you see the next one.
Thanks Melissa
I really hope you feel better It just amazes me with how much more grace
people deal with their health issues than I do.I am such a wuss.
Wishing you wellness and more.
Oh my goodness Melissa and Ellen. These meds are dreadful. I’ve done some crazy things on them. I’m familiar with the police episode but mine was for a parking ticket. I’m just thankful I didn’t end up in jail!
I too believe I had symptoms before being diagnosed. I just blew it off and thought the dr is going to think I’m crazy. An eye dr actually was the first to get it right then my psychiatrist was next and then the neurologist. My side effects of the Tegratol was extreme hyponatremia. I saw my neurologist today and we sit and talk. He’s old school and just listens. I do not have any more options. I told him if you don’t retire and leave me. I won’t jump off the cliff. I turned 54 on Jan 1st and have a long road ahead. I’m always figuring out tricks to outsmart this beast and can be exhausting but worth it. I live with my daughter … not good. It’s just not normal. I was independent before. Miss it. I really need to rehome my two schnauzers because I can’t afford to give them what they need and play with them properly. They seem so depressed. I have my primary care dr appt tomorrow and need to find a solution to help me sleep. My memory is not good and I’m embarrassed by it and having the shocks and stabbing in my face in public is so upsetting. I appreciate being able to pour my heart out. Thanks. Hugs Kristi
I wish I was graceful! In my head, I am angry, whining, and just a little teenager who feels like life grounded her! But thanks for thinking that I am graceful. I am a bit younger than you (39) and so I really get into the self-pity when things are going poorly.
When I think about brain surgery, my attitude is just awful (depression) I just want to lay in bed some days, even when I feel ok. (for the record, I haven’t had many “OK” days in the past month, though.)
It just doesn’t help that the meds keep needed to be increased. It can make a person feel very gloomy and hopeless.
Hi Kristi
I just so much want to meet with you and Melissa.Go to a food court mall so we don’t need to eat(cause I can’t) and just chat.I think we could lift each other up.
I don’t know whether marijuana is legal where you live.The oil helps me sleep.No luck vaping during the day.But truly the best at night.Luckily my house is so small that I could stagger out in an emergency.
Many people take amytriptiline to get to sleep -I wish I could take as it did help with my pain.
When I get this under control I am going on a trip to Alaska.You want to come?
Luck at your doctor.
hugs
Hey Melissa
have you tried drinking your namesake tea?
Lemon Balm
It is good for the nerves.maybe that is the magic elixir.
Because really-doctors are doing the same -guessing.Just they have the prescription pad.
When I get a break from this pain I am going to Alaska.
You come,too.
be fun
Something to hope for.I see the mountains and valleys and snow and open space and eagles flying in my brain.I am going to fill up my brain with this so the spot left for pain is teeny,tiny.
And you are so full of grace-and younger-you could help carry my backpack stuff(just kidding)
My cats get depressed too when I am basically a sad lump on the couch/in bed. I overfeed them treats when my significant other is out, lol and he really doesn’t play with them so it’s just me. Feeding them is kind of silly when they want attention but I have a bad arm as well as TN so I can’t even really throw toys very well.
You may not want to re-home them if you can get them to a dog park once a week or find a part-time walker who can do it (or maybe your daughter can?) A psychiatrist would probably recommend a “therapy dog” which is really just any dog that loves you and distracts you from pain. Just saying you might get super-depressed if you rehome your companions! I forget where I read it but they say not to make important decisions when you’re in pain or experiencing trauma because your mind could change. A lack of sleep is probably one of those situations.
So maybe you can find a way to lighten the load with them. Maybe you’ll feel better when you find a way to sleep? I take Benadryl and actually have to lock one of my cats in the basement overnight because he wakes me up for attention. Things have been better since then but it was hard doing that at first.
The only thing about TN that is helpful to me is that I don’t feel it when I sleep, but when it’s been really bad if I woke up and moved my head, it was right there for me!!
I really appreciate talking to you ladies, too. My boyfriend is the only person I see everyday and lately, it’s been awful because I mostly see doctors once a week for the various health problems. I keep waiting for 1 of the 3 I have to “resolve” but the shoulder problem usually sticks around for a year or two.
Ellen – I will have to try the tea, sounds good! We have a health food co-op so they have almost everything when it comes to tea and tinctures.
The mountains or nature sound really nice. Haven’t gone on vacation since the beach (shudder) a few years ago… We came back with bedbugs!!! So I barely remember that was a vacation at all b/c it was so stressful
We should find a mountain too and just watch the clouds. Watch the birds fly and such. Babbling brooks would be nice, too. Just a slice of normal and peace and calm would be so good!
Yuck
Bedbugs
On top of everything.
shudder.
Now what would you prefer to have
permanent bedbugs
or permanent facial neuralgia?
How to really make life not worth living.Give me a bear or two any day.
Hi
I am not sure why treating pain-but not the cause of the pain-seems to be the focus of every one I have seen.And now some of the doctors don’t even want to treat the pain.Meditate they say.Drives me wild.They don’t want to give meds-but they don’t want to fix the problem-and it is almost like they don’t even want to find the problem.One year later-no diagnosis-or 3 diagnoses.
Hello girls😊
Ellen and mellisa we would rock a great getaway or a fun chat together. I have been miserable the last 2 days. Just when I think I’m coming out of it whammy it hits again. Saving money on a disability income is ridiculous but I can do it. For sooooo long I have gone without its hard not to buy a pair of jeans or shoes. I just want to feel pretty. I changed my hair. It took it in baby steps This last cut was a little to short. Beats having hair fly all over my face. Darci my daughter told me today that … you girls ready for this . I’m a package deal. I have to have my schnauzers and they are part of me. I feel ridiculous because I wrote an email to my ex husband asking if he would take them. Bad idea. No making decisions in the vulnerable moments was right on. He hasn’t returned my email so it’s a no. Whew.
There is a place in Austin TX called the steeping room. My favorite tea is Beautiful Coconut. The owners daughter created it. It’s delightful. My best friend who lives there takes me there. I haven’t been to visit her for at least 2 years. She came to be with me during brain surgery. I better try to sleep. Hugs Ellen and Mellisa.
I was put on 900mg gabapentin 4x times days 600mg Oxcarbazapine 4x a day 60 mg Bacflofen 4x days first time a took I took the dosage I felt like I was on a drunk. I dropped my paper 3 times trying to get it into my house from the mail box. My hands were shaking like I was scared to death. My vision was so blurred I could not see the television. Then I was going to have to take that dosage again at noon again. There was no way I could do it. I reduced the dosage immediately. My doctor gave leave way to such thing. The Oxcarbazapine seems to be the and Bacflofen seem to be the main one that affect my vision. I can’t even drive. With my mother having stage 4 cancer this is not really a option. She lives a hour away and I need to go to her doctor appointments. I went to see my surgeon this past week and he said the MVD is not and option since it did not work last time so I am going to have the Gamma Knife Radiation. Just waiting on the call from the office for when it will happen. I have reduced the meds to 900mg Gabapentin 4x days Bacflofen 20mg 2x days 600mg Oxcabacazepine 3x days. So far that is holding down the pain. I am still like a zombie. I still don’t drive so husband is my driver. Most of the side effects down. I do believe the Oxcarazapine causes most of them. I just waiting for that phone call now. Hopefully you can adjust your meds or get used to them.
My speech got so bad I wasn’t even completing sentences, they started trailing off, and my balance became unsteady and I still had aphasia. I went to the FDA website to see if these were “normal” side effects and the brochure on Trileptal said “seek medical help”.
So I went to the ER. I wish I could say that helped, but it was kind of awful even though all the young people who worked there were very nice. One med student didn’t seem to believe I have TN, another thought I was having an anxiety attack and put me on an IV of Ativan before they sent me for a CT.
All of the med students they sent me did what was called a “quick neurological test” where I had to remember 3 words for 5 minutes. Not once did the test last more than 2 minutes lol. I kept passing their tests so they thought I was nuts. I didn’t speak to anyone while I was there, except them, really, and they kept coming back and asking “how is your speech?”
The head CT found nothing. Eventually they sent me the neurology doctor on call. He had different balance tests as well as word tests for me. I failed them and he almost sent me for a new MRI, but he consulted with a few other doctors and they told me to decrease my dosage down to 1200 mg (I was on that before I went to 1800) and then follow up with my doctor.
It was weird. Never had so many people think I was lying/crazy until they had me read something out loud and I mixed up words and then couldn’t walk with my eyes closed.
Anyway, the aphasia and sentence problems combined with balance problems means I either need a new drug or I need to stay on the small dose and ADD a new drug. Or not. I have no idea at this point. I don’t want anything to do with oxcarbazapine at all now.
Not sure when these side effects will go away.
It makes me completely unable to do any work – I word as a freelance writer doing business writing stuff.
Hi Kristi’
Wow Texas-some beautiful places around there,I have heard.
We could do the getaway near you.I have taken my Canada pension early and it is just starting(they say) so I will have some extra-and I don’t want it all to go for supplements and physiotherapy.
The coconut tea sounds awesome.It is morning and food still seems like a good idea.in another hour,my stomach will turn at everything.
I hope you have a good day.You are lucky to have a beautiful daughter to care for you.And our pets are something that keeps us going.I have an 18 year old cat from my great-great-aunt’s farm.She is a family heirloom.A touchstone to the simpler days of childhood when I used to ride one of their cows.So you keep you dogs.They are for sure a package deal with you.They can so help.Sleep well
Elaine
Hi Melissa
When did you go to emerge?
Sounds scary.I think we know so much more about what we have than the doctors and if you get one who wants to learn it is great.
My bottle of trileptal is still waiting for me to open it.I still have nausea from stopping the effexor-and my doctor wants me to wait until I feel all all the way better(LOL)before I start the trileptal.
You have convinced me to wait until after the specialty dentist at the pain clinic on Monday.Maybe he has magic.
I really hope you and we all find the secret to addressing the pain and the condition.
Watch the birds fly and such. Babbling brooks would be nice, too. Just a slice of normal and peace and calm would be so good!