sara-pezzini
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Everything posted by sara-pezzini
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Well yeah neither did i. But there wasn't much choice..... If you have to choose this terrible excruciating pain or weight gain i think everyone will choose the latter
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I gained 20 pounds sadly. You retain water and if they work correctly you can eat all you want without pain. I watch what i eat but i still gained this weight after a year. But i have to take way more of course. Don't know what it is but it sucks big time! I hate it! Of course exercising is our of the question as well because this affects my entire body and in exhausted and my legs feel like they are 200 pounds...... Only hope i have is tumor shrinking and getting off the meds one day and then it should go off fast.....but it sucks so much!
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Ain't it nice that this technology exists? Imagine otherwise?
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Oh my god woman then go to 600!!!!! Your body will be used to it long before September!
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I also forget to take my meds so i have to send myself reminders for everything. However now with the pain again i don't forget them but when there is no pain it's easy to forget. So reminders for everything and cheats and tricks for everyday life. It takes getting used to....and makes you feel double so old! I work for an 84 year old woman and i was telling her about these things and she said, oh but that's very normal, same things happen to me, i said yes but you are 84 and I'm 43! Haha
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When does his school end for summer? If you can wait it out that'll be the best option. 100km ph 30 km away is a bit more risky than what i have to drive Oh yeah the not rremembering names and words! So annoying, sometimes i have to look up online what i mean, but sometimes there's just the image in my head, how do you freaking Google that? Or covey to someone? Neurologist said that's definitely the meds. I had it before but not as bad as now, two weeks ago i even forgot to go to fysio when i have been coming there for 10 years now, never happened till now.and when she called me it still didn't register because i thought she was canceling on me haha!
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As far as driving goes, they say you can't for a while, my dosage even a year, but then i drive a scooter that goes 30km ph and i asked the neurologist and he didn't know, he said just try. Well since it goes slow it is fine, i have to say i don't notice anything when I'm on it, even with my blood full of meds. I just have to be careful and pay attention. That's it, it's because it can be hard to concentrate but i found if you're careful and concentrate it is fine. Don't know how busy traffic is and how far the school is? Those two play into it as well.... But that's why trying on Friday is the best idea, since the meds work so fast you'd know on Sunday morning if you don't feel well and you can leave the added 200mg again. It's not a lot, it won't do much go up or down! You've been on them long enough now
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But please note the step between 400 and 600 is nothing. Since you're body is already used to 400 you won't even notice it other than in the pain. Also driving should be fine as well because essentially it is like going from 0 to 200 since it's been in your system long enough to get used to it. It would be different if you went from 0 to 600 but now this step shouldn't be worried over so much. You shouldn't be in pain, please think about it..... If you really are scared for side effects than keep this up till Friday and then in the afternoon go up, you'll have the entire weekend to see what happens but i really think nothing will! I had another 900mg of gabapentin added yesterday and i don't notice anything different other than the pain being gone and that is just such a relief! It outweighs the bad really!
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Aww no not you too! So sorry! (((Hugs)))
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Trust me you were very lucky! It doesn't work that way for everyone, most of the TN stories i read people need more and more tegretol until they're at the maximum and then they get another medicine added or they have to stop the tegretol and try something else, because the fact is that the body gets used to the tegretol and after a while it simply doesn't work anymore! Obviously for me the cause of the TN is a tumor but i am now a year on tegretol and am at the max of it and at the max of gabapentin as well, and i have since that year gained 20 pounds because tegretol usually has that effect, which really sucks! And now both those meds don't help as i am in pain now as well. But of course my cause is different, but this is what you mostly see about people with this disease. So you were really really lucky and it's not a fact that tegretol is the only thing that helps. Different things work for different people and it's often a long way together with the neurologist to find out what works for every individual!
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I think it may work out that way again! Another 3 more months of meds and i think it will be a little scary then to come off them. I know i will be terrified when we're going to lower the dosage. But i think a month in now and the pain doesn't get worse that's a good sign And then let's hope next pause will be 12 years or so! At least you can put the surgery option and all that out of your mind for now! That should make you feel more at ease!
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Great to hear! Maybe it's going in remission but it's also the carbamazepine that's working. It feels as if there is zero pain but it may be surpressed, so don't go off them to soon! But it's really wonderful if it is gone with this dosage and no more is needed! It's also working because your body doesn't know the carbamazepine yet, the longer you're on it the more you need, and the less it works. So I'd say stay on it for a while and then slowly get off them. And then hopefully it's gone again!
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People, mostly school kids on their bikes riding around just looking at their smartphones! So annoying and so dangerous, they only have eyes for their phones. Is social media so important that it can't wait 5 minutes till you're home safe? Does it have to cost you your life? Stupid kids!
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Yes it is somewhat, sometimes more than other times but it's different for different people. It's one of the side effects!
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You too
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As did yours to me the past year ;-)
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That's what my doctor said as well, educate yourself but don't read the horror stories online. And of course the people who are fine or have mild symptoms or the meds work without too many side effects don't go online and say they're fine. It's usually the other stuff you read..... The worst is behind you now, you're under the control of a doctor and have meds to control the pain, so no more screaming in the ER. But i do think the best thing of this all is that you now know that you have TN, you'll recognize it next time and not panic cause you know the pain will go away in a few days. The hardest part is the pain and being terrified that it will always stay that way, not go away anymore. But you know the carbamazepine works and your still on a low dosage, so a long way to go with it still! And all those things are reassuring for the next time...
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Seems like suddenly the sun started shining again right? There is hope! I'm glad you got to go to the doctor today and he could ease some of your fears and worries!
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Yes that is great news that he thinks that and with the history it also seems likely and that is awesome! What relief it will be to be able to quit those meds again At least it all sounds more positive than last week! Keep the faith!
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I hope you'll be free of pain soon and then for a few years again! Then you'll forget all about this again and can go on with your normal life! I have my update in August and you in September, will be important months for us both. Did he mention a higher dosage? How is the pain now? How will he proceed with the dosage?
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Ain't it great to be so special? At least now now you know for sure, didn't he schedule an mri? In hollands it's mandatory with TN... Mine was also in episodes, 3-4 weeks of pain and then 3 months nothing, and i passed all those tests to rule out MS and tumor and well....how nice..... It's a guessing game with the meds, when to go off them, that's scary.... At least now you have a doctor who guides you!
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I have been very depressed as well last year, keep in mind it is also listed as the side effect of the carbamazepine..... But yes i know how that feels! I'm still in a sort of fog state, a mist in my head, feels like I'm not really present. I will be so happy if i can quite with the meds! They cause a lot.... But also the prospect of a disease you have no control over and a pain that's debilitating is depressing. Might be a good idea to go and talk to someone, it helped me, though I'm depressed again at the moment..... When is your appointment this week?
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But then you could be lacking it in your system, maybe they should test for that? I know a shortage in vit D can cause severe problems..... They should check you out anyways, that much health issues since February isn't normal. So there must be a reason for it. And then TN as an extra gift, ugh! That sucks big time!
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400 is the smallest dose, i think they will go to 600 indeed, 3 times a day 200, and you won't notice so many side effects. Yes it all sounds crap! Do you take vitamin D supplements? That will help so much with your immune system. It really helped me! They also say it can help with TN. As well as vit B12 magnesium and calcium. Not sure though! But I'm taking all of them and the vit D really helped me with my immune system. Worth a try! But it sucks, hug!
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I am sorry though cause i know how much that sucks! To get that pain again, it's depressing.....