sara-pezzini Posted April 28, 2017 Author Share Posted April 28, 2017 Aww such sweet messages!! Thank you!! Yes i am happy and grateful that this is more or less behind me and i can look to the future now, and i am looking forward to it actually instead of dreading it. I'm clearly not depressed anymore!! It's R's birthday today and i am so curious how he will receive that balloon hahaha He will be laughing out loud I'm sure lol Link to comment
RainyCoast Posted April 28, 2017 Share Posted April 28, 2017 i'm so happy for you sara!!! have fun celebrating Link to comment
sara-pezzini Posted April 28, 2017 Author Share Posted April 28, 2017 Balloon store just called me, the balloon broke during transport so they have to make a new one and send it but it won't arrive til tomorrow! Crap!!! Link to comment
faraday Posted April 28, 2017 Share Posted April 28, 2017 He'll still love the surprise Sara I'm so glad things are going good for you Link to comment
chitown9 Posted April 28, 2017 Share Posted April 28, 2017 We are all doing the happy dance for you, Sara! chi Link to comment
sara-pezzini Posted April 28, 2017 Author Share Posted April 28, 2017 Aww thank you faraday! yes he will but i am bummed that he won't get it today.....i send him a message telling him that i have send him something but it will arrive tomorrow, then tomorrow i can explain and at least now he's already curious! He messaged me right back and yes he's curious lol Aww thank you chi! Sweet message! Everyone's support here the last 2 years has meant a lot to me! Link to comment
sara-pezzini Posted May 1, 2017 Author Share Posted May 1, 2017 Down another pill today.... I'm now only on 400 mg of tegretol from 1200 and 300 mg of gabapentin from 3600!!! Will take the last pill of gabapentin off by the end of this week..... and i have cut out my afternoon dose..... I'm now on twice a day for the first time since about 2 years ago and I'm lower than i have been in 18 months!! Still no pain! Link to comment
Seraphim Posted May 1, 2017 Share Posted May 1, 2017 Down another pill today.... I'm now only on 400 mg of tegretol from 1200 and 300 mg of gabapentin from 3600!!! Will take the last pill of gabapentin off by the end of this week..... and i have cut out my afternoon dose..... I'm now on twice a day for the first time since about 2 years ago and I'm lower than i have been in 18 months!! Still no pain! That is great!!! Two days ago I took off 200 mg and I feel like death I'm not in any pain but I feel like I'm gonna vomit any second and I have no balance Link to comment
sara-pezzini Posted May 1, 2017 Author Share Posted May 1, 2017 Oh yuck!! That's horrible... it sucks that lowering gives the same side effects as when you go up!! I started doing a little bit around the house again, vacuumed upstairs and was shaking and sweating and out of breath and my head hurt..... Hm this will take longer than i thought...... Link to comment
sara-pezzini Posted May 4, 2017 Author Share Posted May 4, 2017 Crap, the pain started again two nights ago, thought i would just wait it out but last night i got some mild electric shocks again, they were not nearly as bad as they used to be but surgeon told me that couldn't happen again so I'm a little worried now and put the two pills i took off this week back on again..... dizzy now! Forgot how that feels upping meds..... Hopefully i can lower again soon but maybe do that more slowly.... I was at 400 tegretol and 300 gabapentin so basically nothing, and I've been on a higher dose for at least 18 months now so maybe that needs some readjusting and maybe that's why it needs to go slower from now on..... Link to comment
sara-pezzini Posted May 7, 2017 Author Share Posted May 7, 2017 The pain got worse and i had to up the meds even more, in total i now added 1500mg of gabapentin back..... dizzy, headache, sleep a lot.... all over again... I'm scared that the surgery didn't work, i try to stay calm and think they nerve was damaged by the tumor amid the radiation and the surgery so it's probably reacting to that but the doctor said this particular pain couldn't come back anymore, the electric shocks.... Today finally i think i have it under control again but i have mailed they aftercare of the hospital so it at least reaches the doctor as.... if nothing ast least he knows but maybe i get a response on whether this is normal or not.... Link to comment
sara-pezzini Posted May 7, 2017 Author Share Posted May 7, 2017 Yeah i know...... sucks so bad! I mailed the hospital and they will give the mail to my doctor tomorrow and then get back to me... It seems the two pills i added yesterday finally did the trick, the pain is under control now. But I'm scared and upset..... Link to comment
Seraphim Posted May 7, 2017 Share Posted May 7, 2017 I am sure you are upset ! Maybe the nerve is just irritated? Maybe you reduced too fast? Link to comment
sara-pezzini Posted May 7, 2017 Author Share Posted May 7, 2017 Yes that is my hope as well....i know the nerve is irritated from the tumor, from the radiation and from the surgery so i hope that is it... But the doctor said last week that this pain couldn't cone back again because he fixed that, so I'm curious what he says, if it happens more often, if it takes more time etc If i am able to lower again i will go very slowly, maybe that is necessary in my case.... But I'm very worried the surgery failed and we'll need to do it again..... which sadly happens often as well... TN is just such a terrible illness!!! Link to comment
sara-pezzini Posted May 8, 2017 Author Share Posted May 8, 2017 Doctor wants to wait and see what happens in the longer run and for now advises to keep on with the meds.... So that didn't make me any wiser...... will indeed take the meds and once i feel i can lower again, i will, but slower! For now the pain is as good as gone... Link to comment
Seraphim Posted May 8, 2017 Share Posted May 8, 2017 I think it is wise to taper pretty slowly.❤️ Link to comment
sara-pezzini Posted May 8, 2017 Author Share Posted May 8, 2017 Well after this surgery you can lower fast because the problem should be fixed so usually your off the meds in 6 weeks....i got a schedule that he made for me and i went slower than that even.... but maybe because there is also a tumor my situation is different than usual... Next time i will try your method! Just a pill every few weeks instead of every 2 or 3 days..... and just hope that'll work.... Meanwhile i slept like a log again....... the one upside of the meds.... but i rather lie awake every night! Link to comment
sara-pezzini Posted May 13, 2017 Author Share Posted May 13, 2017 Well the pain is now completely gone again and i think in the coming week i will take off one pill and then keep it like that for at least 10 days i think..... and carefully lower like that.... fingers crossed! Meanwhile the dinner surprise that i had planned for R his birthday last week didn't happen because i was in pain so we'll set another date for it. He still has no idea what will happen lol.... this week he did come for a quick coffee after his work and that was nice! He's sweet lol we had fun and did lots of talking.... still no kiss but he took my hand and held it woohoo! That gave me goosebumps lol! First time he touched me on purpose! That was very nice! And didn't feel weird holding hands! Sigh...... Link to comment
sara-pezzini Posted May 18, 2017 Author Share Posted May 18, 2017 got a letter from the hospital, with a list of questions about how I'm feeling and if i need psychiatric help, and a brochure of how to cope with acquired brain damage.... Well....i don't need the psychiatric help cause I'm doing fine but the brain damage part is something i have to let sink in... The tumor and the radiation and the surgery all caused brain damage and i now have brain damage.... that sounds so weird. Of course i knew all this in theory but to see it in writing is a different thing.... And they gave all sorts of different tips on how to deal with brain damage and there was a lot of info that i recognized so yes i definitely have brain damage.... Need to let that sink in...... Link to comment
Seraphim Posted May 18, 2017 Share Posted May 18, 2017 got a letter from the hospital, with a list of questions about how I'm feeling and if i need psychiatric help, and a brochure of how to cope with acquired brain damage.... Well....i don't need the psychiatric help cause I'm doing fine but the brain damage part is something i have to let sink in... The tumor and the radiation and the surgery all caused brain damage and i now have brain damage.... that sounds so weird. Of course i knew all this in theory but to see it in writing is a different thing.... And they gave all sorts of different tips on how to deal with brain damage and there was a lot of info that i recognized so yes i definitely have brain damage.... Need to let that sink in...... That is scary isn't it? But really when we have trigeminal neuralgia we have a damaged brain anyway . Right. Because the nerve comes out of the brainstem and it is damaged . Link to comment
sara-pezzini Posted May 18, 2017 Author Share Posted May 18, 2017 But i wouldn't have had TN without the tumor..... for me it's been a piling up of scary things for 3 years now..... first the terrible pain that turned out to be TN.... shock 1 then tumor.. shock 2 then the whole radiation thing which was terrible Now barely recovered from that i went for brain surgery... It's just a lot all together and it's starting to sink in... And now i am forever thought of by doctors as having brain damage..... What else? You know? On a different note, I'm going to start with a low carb diet next week, next Friday actually cause i have my groceries for the entire week already.. see if that'll help me lose the weight again.... My fysiotherapist is going to help me build my ( how do you say that in English? ) my......? haha i cannot find the word... But i have to start exercising on the crosstrainer for 2 minutes a day for an entire week...... not do more if i can and nor do less if I'm tired. Then add 30 seconds and do that for a week. I have been trying to do it on my own but i did too much, i want to push harder but i can't she said..... And i have to train my back muscles cause they are very weak... I was unable to do pretty much anything for 8 months now so i start from zero..... I am however not dizzy anymore! Yay! Link to comment
sara-pezzini Posted May 19, 2017 Author Share Posted May 19, 2017 am so excited, can't wait, totally stoked for the new Twin Peaks on Sunday!!i can't wait! I was a mega fan in the 90ties and was obsessed with it... Been so excited since the announcement in 2014 and now it's finally almost here Link to comment
Jibralta Posted May 20, 2017 Share Posted May 20, 2017 I never watched it but I remember when it was on. My best friend at the time was obsessed with it. When I was in college, I discovered the soundtrack (I think from the movie). I thought it was really cool. Lots of backwards music. Link to comment
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