sara-pezzini Posted June 26, 2016 Author Share Posted June 26, 2016 I hope so! If the pain is gone then i can lower the gabapentin a little! I'm on the max now so that's important to me to get that a little lowered because then i still have some way to go if the pain starts again! I'm on 3600mg of that and if i get totally painfree after a few days i lower to 2700, and then see. I really hope so! Because now I'm still always scared, what if the pain hits again? Then i have nowhere to go and that scares me! Then we'd have to slowly lower the gabapentin as well until I'm off that and then go on another med. But that means more and more pain as you lower and that's not something i look forward to! I rather keep it like this with a little room to go Link to comment
sara-pezzini Posted June 26, 2016 Author Share Posted June 26, 2016 The tegretol has to stay at 1200mg. no lowering that.... Link to comment
Seraphim Posted June 26, 2016 Share Posted June 26, 2016 I hope so! If the pain is gone then i can lower the gabapentin a little! I'm on the max now so that's important to me to get that a little lowered because then i still have some way to go if the pain starts again! I'm on 3600mg of that and if i get totally painfree after a few days i lower to 2700, and then see. I really hope so! Because now I'm still always scared, what if the pain hits again? Then i have nowhere to go and that scares me! Then we'd have to slowly lower the gabapentin as well until I'm off that and then go on another med. But that means more and more pain as you lower and that's not something i look forward to! I rather keep it like this with a little room to go I hope you can do that Sara! Because I only have two more increases of tegretol and then what? Link to comment
sara-pezzini Posted June 26, 2016 Author Share Posted June 26, 2016 Then they'll have to add another medicin, either gabapentin or oxycontin or another. Or they can switch you to a whole other if you feel it doesn't work enough. But you should always have a say in that as well! And for me when i was on 800 we then switched my intake from 3 times the one you take to two times those and one dosage of long ones at night and it was 3 times 300 and the difference from 800 to 900 was huge! Huge and i was painfree for 4 months! And only then did the pain start again because the tumor was swelling up after the radiation. Maybe otherwise i could have stayed like that for a long time. So you never know when you hit the right dosage! In your case i hope you go into remission soon but even til September sounds like a long way when in pain! Link to comment
Seraphim Posted June 26, 2016 Share Posted June 26, 2016 Then they'll have to add another medicin, either gabapentin or oxycontin or another. Or they can switch you to a whole other if you feel it doesn't work enough. But you should always have a say in that as well! And for me when i was on 800 we then switched my intake from 3 times the one you take to two times those and one dosage of long ones at night and it was 3 times 300 and the difference from 800 to 900 was huge! Huge and i was painfree for 4 months! And only then did the pain start again because the tumor was swelling up after the radiation. Maybe otherwise i could have stayed like that for a long time. So you never know when you hit the right dosage! In your case i hope you go into remission soon but even til September sounds like a long way when in pain! The long acting almost killed me . Two days into long acting and I was screaming in pain. That was a no go I seem to need the fast acting. Link to comment
sara-pezzini Posted June 26, 2016 Author Share Posted June 26, 2016 Yes you do but then this was also only in my case and my own idea haha i just told the neurologist if i couldn't try that and he said well yeah you can try. And it worked, so i guess i felt for myself what i needed and now i felt very strongly that i needed that dexamethasone. I think you have an instinct of what your body needs somehow.....hopefully haha Though it also tells me i need a man but that's a whole other story, i don't listen to that part haha but the brain......yeah.... But you're 4 times 200 now right? Then it's just going to be 4 times 300 and that's it, so you're one step from the max. But i think this will work some time since you added the evening dose, levels it out more evenly Link to comment
sara-pezzini Posted June 26, 2016 Author Share Posted June 26, 2016 I became a carbamazepine expert......who knew? A year ago i couldn't even pronounce it.....funny the things you learn and apparently i had to learn about TN and carbamazepine and acoustic neuroma's Just my luck........lol Link to comment
Seraphim Posted June 26, 2016 Share Posted June 26, 2016 Yes you do but then this was also only in my case and my own idea haha i just told the neurologist if i couldn't try that and he said well yeah you can try. And it worked, so i guess i felt for myself what i needed and now i felt very strongly that i needed that dexamethasone. I think you have an instinct of what your body needs somehow.....hopefully haha Though it also tells me i need a man but that's a whole other story, i don't listen to that part haha but the brain......yeah.... But you're 4 times 200 now right? Then it's just going to be 4 times 300 and that's it, so you're one step from the max. But i think this will work some time since you added the evening dose, levels it out more evenly Yes, I am at 200 four times a day. But the specialist seems to think I will go into a remission . But he only sees people with this diagnosis once every four years or so . So he is discussing my case with colleagues. Link to comment
sara-pezzini Posted June 26, 2016 Author Share Posted June 26, 2016 I think yours is very rare indeed to get it and then years later get it again and have it go into remission and i really hope it does this time as well! There is so much unknown about this disease, it's so weird how it works. Disease/pain from hell! And just because the brain thinks there's pain, it interprets something as pain where there shouldn't be pain and that's why it's so hard to treat, like phantom pains, also sich a complex thing. Link to comment
Seraphim Posted June 26, 2016 Share Posted June 26, 2016 I think yours is very rare indeed to get it and then years later get it again and have it go into remission and i really hope it does this time as well! There is so much unknown about this disease, it's so weird how it works. Disease/pain from hell! And just because the brain thinks there's pain, it interprets something as pain where there shouldn't be pain and that's why it's so hard to treat, like phantom pains, also sich a complex thing. Yes, he thinks it is very unusual to go into remission for 6 years. But when I feel no pain at all then he wants to try weaning down . Link to comment
sara-pezzini Posted June 26, 2016 Author Share Posted June 26, 2016 Yes i think that's best, the sooner you are able to get off this drug the better! And so far you haven't been completely painfree, or at least not very long so i think you'll know when the time is right. It will be scary though! I think for me i have to stay on it for much longer after today and when the tumor finally starts shrinking and i can wean of it I'll be terrified! Link to comment
sara-pezzini Posted June 27, 2016 Author Share Posted June 27, 2016 Day 12. Well the 12 days are done, had loads of energy today so i made the most of that at work! Now see how it goes..... Just noticed another thread i replied to turned out to be a troll, so annoying! Especially if it looks real..... Link to comment
sara-pezzini Posted June 28, 2016 Author Share Posted June 28, 2016 The energy is still here..... And last night i finally slept through the night again! No more waking up 3 times to pee, so this is better! Now see what the result is...... I do feel better somehow, happier and more like myself and i hope that stays Link to comment
Seraphim Posted June 28, 2016 Share Posted June 28, 2016 I think you're doing quite a bit better Sara! Link to comment
sara-pezzini Posted June 30, 2016 Author Share Posted June 30, 2016 I really was, but now it's over....or hopefully just a bad day, was exhausted even when i got up, had a headache, was dizzy and my head felt weird again. So i think the effect of the drug has worn off and it's out of my system..... Hope after the weekend I'll have some new energy cause this is just too bad! TN is okay atm the pain is really almost gone but since there's a little bit left i wonder if i should lessen the meds. Scared to.... Link to comment
sara-pezzini Posted June 30, 2016 Author Share Posted June 30, 2016 Thank you! Yes it sucks! Even though the doctor and the pharmacy warned me, i was hoping to have it last. But it's also end of the week and I'm always tired on Thursday, cleaning all day and all day Wednesday as well. So i kinda hope after the weekend it'll be better. And the dizzyness will probably come and go for a while.... Crap tumor! Link to comment
sara-pezzini Posted July 1, 2016 Author Share Posted July 1, 2016 And there's the pain again! Damn! And a whole bunch of other swear words..... I took a bite and got stabbed in my jaw with knifes.... And of course like last time it happens when the neurologist isn't reachable anymore... can't go into the weekend like this, especially since I'm hosting a dinner party tomorrow and I'm cooking like crazy... Searched online and saw that in some cases the tegretol can be up to 1400 instead of 1200 so I'm doing that now and will call him Monday and ask what to do. This is such a setback, I'm so disappointed and sad over this. It hurts so bad...thank god so far only when I'm eating but experience has taught me that all other movements follow soon. Damn Damn Damn Crap tumor i hate you! Link to comment
sara-pezzini Posted July 2, 2016 Author Share Posted July 2, 2016 The extra 200mg of tegretol helps a bit, breakfast was very painful but then i took 100mg and around 4pm again and lunch and dinner were actually okay. Which makes sense since 4pm an extra 100mg and then not till breakfast and since those are the quick working ones they are worked out by breakfast time. But okay, will make porridge tomorrow morning. And then the rest of the day it's bearable. But what will the neurologist say? I don't know if he agrees since this is not the norm to go to 1400.....but it works.....for now. What's next? Link to comment
sara-pezzini Posted July 3, 2016 Author Share Posted July 3, 2016 It really is! I'm so upset right now, i wanted to wean down the meds, and instead I'm dealing with even more pain. I don't know what to do anymore, i hope the neurologist has an idea but right now I'm thinking maybe the radiation was a bad idea since it was fine until then..... Hope in a few years the damn thing shrinks and i will be happy about it and know I've made the right decision but it's very hard now. I don't know how much more i can take so I'm thinking maybe i should do the procedure that the neurosurgeon suggested, with the hot needle into the cheek....... Just it has side effects as well but I'm thinking now that numbness to the face and tongue is much better than this pain! Since i can then also wean off all the meds and live normal again..... I'm seriously leaning towards it, will talk to him in august after my mri.....but even 5 weeks seems long right now! Crap TN! Link to comment
Seraphim Posted July 3, 2016 Share Posted July 3, 2016 Yeah I think sometimes that we are medical guinea pigs . Let's try this whoops it didn't work . Let's try that oooops it didn't work . Really we are guinea pigs . And none of these medications are good for us either . You don't know what procedure is worse. Link to comment
sara-pezzini Posted July 3, 2016 Author Share Posted July 3, 2016 Yes well the annoying thing is that the doctor's don't know and leave a lot up to the patient, how are we supposed to know? My tumor, you have 3 options, do nothing which became impossible because it was growing into the facial nerve, pressing the nerve aside, meaning much more pain. Then operate which is 99% guaranteed i lose my hearing on that side, risks of numbness to the face, more risks and then the risk of them damaging a nerve, since they're all close together, and if they damage the facial nerve the pain would never go away. And then 3rd option is the radiation i did, the least invasive but it takes a minimum of 1.5 to 2 years before the tumor shrinks, if it shrinks at all. And they tell you all this and you listen, and it sounds so foreign, after the radiation the tumor will swell up for a few months which probably means more pain, and you think uh huh, makes sense, but it's all abstract at that point and you don't know how it will feel. But now i am living those months and i wonder, when will the swelling be over, and i just don't know.... They fill me up with meds and I'm a zombie and have more symptoms from the meds, but hey they kinda work. But the doctors just don't know what meds will work so it's trial and error. And i feel like crap, just want to feel like myself again, i sleep so deep that waking up on the morning is so very hard and I'm tired all the time. With the Sweet procedure i could be off the meds soon and it should work for 5 years, no pain for 5 years sounds heavenly. Oh yeah but pay off your face will go numb........sigh....... I just don't know! I think btw it's not called Sweet in English but if you Google it with TN added you do find it..... Link to comment
Seraphim Posted July 3, 2016 Share Posted July 3, 2016 Here is what they call it here . Link to comment
sara-pezzini Posted July 3, 2016 Author Share Posted July 3, 2016 Yes! I knew the name but couldn't remember it! Link to comment
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