sara-pezzini Posted June 5, 2016 Author Share Posted June 5, 2016 The gabapentin, as I'm on the maximum of the tegretol since February, then the neurologist added the gabapentin which i had to raise each time. Was on the maximum of what he thought was safe with that one as well, because it's not good for the liver, but as for the medicin itself i could go one dosage higher. Which now did the trick. But i hope to lower to the old dosage soon since this is not good for me. But hey the pain is gone! I just felt it lessen and now be gone..... Link to comment
Seraphim Posted June 5, 2016 Share Posted June 5, 2016 Phew! That goodness for that! The problem is none of the solutions are really that good . Link to comment
sara-pezzini Posted June 5, 2016 Author Share Posted June 5, 2016 No very true! But at least it helps again for now....very grateful for that because this one was unbearable, couldn't see me wait till Monday..... Link to comment
sara-pezzini Posted June 7, 2016 Author Share Posted June 7, 2016 Wel the neurologist said better this dosage than so much pain, if the pain lessens then so can the dosage. But if it gets worse because it's not completely gone, then i should call and he will talk with colleagues and try to figure something out. The extra dosage made me very dizzy yesterday and i talked to my boss and he said it's okay to just do what's really necessary this week and leave the rest. He was super understanding. Talked a long while with R and he was so sweet and caring, made me feel instantly better haha....if only.... Came home, had dinner and then at 8.30 i fell asleep on the couch, woke up 2 hours later and that was of course my bedtime haha so went up and slept till 8.30 this morning so almost 12 hours of sleep! Added dosage does that...so i have to remember i need more sleep this week... Ugh two years of this crap now....when will it end? Back of my head is aching and that's where the tumor is so that damn thing is up to something.... The one good thing is that i have a lot of support and that really helps! Link to comment
sara-pezzini Posted June 9, 2016 Author Share Posted June 9, 2016 Since i forget everything it was just a matter of waiting for it, and yes today i forgot to take my meds to work! Major panic when i discovered. Rushed home and took the dose 2 hours late. That is not a big deal but when there was this much pain on Saturday i still panic now, terrified of having it come back like that Link to comment
sara-pezzini Posted June 9, 2016 Author Share Posted June 9, 2016 Im also waiting for a call from the radiation hospital, it had occurred to me that my neurologist keeps treating the pain but that doesn't help the cause, of course till the tumor shrinks nothing will, but in January i got the really bad dexamethason medicin which was to help the brain from swelling, well obviously something is swelling now as well, since aside from the pain i feel pressure on my head, the spot where the tumor is hurts and I'm also very dizzy, meds do that but the tumor also presses against the balance? Nerve. And i suddenly remembered that the neurosurgeon said that we could repeat the dexamethason in the summer of the tumor would act up. So i want to try that..... Told the assistent my symptoms and she will tell him and now waiting for a call back. Hope he agrees! Link to comment
Seraphim Posted June 9, 2016 Share Posted June 9, 2016 Did you hear back from them Sara? Link to comment
sara-pezzini Posted June 9, 2016 Author Share Posted June 9, 2016 No when i posted that it was already evening over here so will not hear back till hopefully tomorrow..... Too bad cause i had hoped they would call me today... Link to comment
Seraphim Posted June 9, 2016 Share Posted June 9, 2016 Hopefully you hear back in the morning ! We must be about six hours difference ,right ? Here it is 2:13 PM Link to comment
sara-pezzini Posted June 9, 2016 Author Share Posted June 9, 2016 Hopefully you hear back in the morning ! We must be about six hours difference ,right ? Here it is 2:13 PM Here it's 8.30pm so yes 6 hours Yes i hope in the morning but even if so i won't be able to get the meds from the pharmacy, takes a long time here. And i had wanted to start on Friday so that i have the worst side effects in the weekend.....Don't really remember how it affected me in January.... Link to comment
Seraphim Posted June 9, 2016 Share Posted June 9, 2016 Oh wow , as,long as I have a prescription I can get mine same day. But maybe it has something to do with the type of medication ? Link to comment
sara-pezzini Posted June 9, 2016 Author Share Posted June 9, 2016 No all medication, if they get the prescription to the pharmacy before 11am then you can get it after 4 the same day, and otherwise the next day, but since i work from 2.30 till 6.30 i can't get it..... But first wait and see what he says! There is still a burning pain under my teeth and that won't go away with this dosage. Sure I can live with this pain, though no fun, but I rather get to the source and hopefully do something about the swelling. Now dexamethason is no picnic so they don't prescribe it easily, hope he remembers what he said. It's annoying that everything with these type of doctors go through assistants, you tell them the problem, they tell him, he answers them, they answer me, something always gets lost in translation. I would like to talk to them myself a little more, but that is expensive for the insurance company haha a little chat with the neurologist is 125 euros! For 5 minutes! I wish i had that hour rate! Link to comment
Seraphim Posted June 9, 2016 Share Posted June 9, 2016 Ok, here I can go to the pharmacy anytime and get medication with a prescription . I have drug insurance thankfully , a lot of Canadians don't . They pay 80% up to $15,000 per year. Link to comment
sara-pezzini Posted June 9, 2016 Author Share Posted June 9, 2016 Over here you can choose per year what insurance you want, for this year i got one with good coverage so everything gets paid. But you have to be careful here cause some insurance companies don't pay for every hospital or fysio therapist so you have to look that up in advance, bizar! I got one that has contracts with all hospitals.... We pay around 130 a month, and then we also have a 360 euro per year of the first medical costs you make that you have to pay yourself. I pay that monthly, so almost 200 a month for health insurance. And now i don't have dentist coverage again, cause that's costs way more than you use, a dentist check or a cavity don't cost that much. And i remember 3 years ago i was so sick of those costs that i actually really tried to figure out if i could go without insurance and just pay the medical bills myself because i never had any costs and paid the insurance for nothing. Turns out you have to be insured in Holland, can't choose. Hahaha! Phew! Good that that didn't work out because now i have so many bills. Doctors cost so much! Mri? 600 Euro, and im really waiting for the bill of the radiation cause that's gonna be such a big one! Glad i don't have to pay anything! The only thing i have to pay myself is my birth control..... Link to comment
sara-pezzini Posted June 9, 2016 Author Share Posted June 9, 2016 It's so interesting to see how it's done in different countries! My brother lives in Sweden and it's so well done there! Link to comment
Seraphim Posted June 9, 2016 Share Posted June 9, 2016 Ok , here drug and dental is completely independant and you have to get your own insurance. I am lucky though because my husband is part of a massive group plan so he pays $4 a month for me and our son. But this group plan covers the military and all government workers. Link to comment
sara-pezzini Posted June 9, 2016 Author Share Posted June 9, 2016 That's a great plan too! My work has a contract with the insurance i have and so all employees get some discount. So that helps a little. It's also in my opinion the best insurance in Holland so i would have taken them anyway. This new dosage is making me so tired somehow. Tuesday i slept 12 hours and last night 12 hours as well. If i don't do that i fall asleep during the day. Are you as tired as well? Last year when i first started carbamazepine i had the same, and sleep so deep, not wake up during the night to pee, and waking up is so hard, like waking up from narcosis...... Link to comment
Seraphim Posted June 9, 2016 Share Posted June 9, 2016 That's a great plan too! My work has a contract with the insurance i have and so all employees get some discount. So that helps a little. It's also in my opinion the best insurance in Holland so i would have taken them anyway. This new dosage is making me so tired somehow. Tuesday i slept 12 hours and last night 12 hours as well. If i don't do that i fall asleep during the day. Are you as tired as well? Last year when i first started carbamazepine i had the same, and sleep so deep, not wake up during the night to pee, and waking up is so hard, like waking up from narcosis...... This new dose is making me stoned out of my tree. I'm not going to drive for the next few weeks because I am that tired. Last time the side effects wore off in a few weeks. I expect they will this time too. Oh yeah you sleep like a rock. Link to comment
sara-pezzini Posted June 9, 2016 Author Share Posted June 9, 2016 Yes stoned! I remember that! Haha that was funny! I saw funny things haha No no driving now! Good that you don't have to. The sleep thing is the only good thing with these meds cause i haven't had one night of thinking and panicking. I slept great every night since i got that diagnosis.....or at least since i started the meds. On no the only night i missed was the one before the radiation, but okay..... Last year when i started the meds i needed an afternoon nap every day but now rarely, i have learned when i sleep more hours at night ands give into that, then i can stay awake during the day. Link to comment
Seraphim Posted June 9, 2016 Share Posted June 9, 2016 I've been having big panic attacks before I actually fall asleep though. But once I fall asleep I'm out cold. Link to comment
sara-pezzini Posted June 9, 2016 Author Share Posted June 9, 2016 Luckily i didn't get any panic attacks before going to sleep. I did get a lot of anxiety during the day this last year but i think in both our cases that is perfectly understandable It's not nothing that we're having to deal with! Link to comment
sara-pezzini Posted June 13, 2016 Author Share Posted June 13, 2016 Heard back from the radiation hospital and I'm getting a ct scan done Wednesday and then a talk with the neurosurgeon after that....so they're taking it real serious! Link to comment
sara-pezzini Posted June 13, 2016 Author Share Posted June 13, 2016 A little bit yes! Not the scan itself but you know....... Link to comment
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