sara-pezzini
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Everything posted by sara-pezzini
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I know sweetie, i know! It's pure hell! But you will get through it, one step at a time! maybe an ice pack will relief you somewhat?
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Oh no! I was thinking you're up late/early! Yeah you gotta find what works for you and it takes time. You can combine them as well, the other ones during the day and a slow release in the evening so you're good for the night! That helped me for months!
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When I'm in full attack it doesn't stop at all, it's just all day long trying not to move anything in my face, obviously accidentally do and the lightning shocks strike for minutes on end. So exhausting! I've cried so much! And this would be for around 3 weeks like that and then it was completely gone! This was before the diagnosis and before the meds. .. Such a weird and scary pain! And even doctor 's don't know everything about it.....but glad we live in this day and age, and not 100 years ago! Yikes!
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It's interesting how different the same disease can be....everyone had their own triggers. When it's at its worse for me i can do anything with my face, yawning, talking, smiling, swallowing, eating, sneezing, every movement of my face, however small, sets off electric shocks in my jaw that lasts for about 5 minutes. I was once at work talking to the big boss of my company when an attack happened, i couldn't talk anymore, was crying in front of him. Gah bad memories....those electric shocks....if i kept having them and nothing would work anymore it would be the end for me!
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Maybe once you get used to this dosage, or up it again, if my meds are really working i feel zero, zip and can eat and do all i want on that side! Ah distant memories......but once the pain is under control you cannot imagine how it felt and when the pain hits again you cannot imagine how it felt to be painfree..... Is the brand you have now the same as the other ones? Because the brand can be important too! Brushing teeth is hell, for you too? The moment the brush touches the teeth i want to bang my head against the wall
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Oh man we're pain buddies right now! Hope it passes soon. I think in your case 1 or 2 days, hopefully.... It sucks so bad! It's such a bad pain, it sucks that you always have to think about it when you eat or plan your meals. Or plan your days out or holidays, what if right then I'm in pain? It sucks!
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Ha good that you have the extended now! And the chance to raise yourself, but of course the thought of doing this for life sucks! That's just crap! Hopefully that's not the case and it goes into remission again. Count down the days and weeks right! I left the gas on last week without a pan on it thank god, but all afternoon! Lol
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Well it wasn't so much the neurologist that gave me those but rather that he prescribed me new ones since i was almost out and the pharmacy give me what they want since they think brands don't matter, and i guess this time these were nearby or whatever, because it's both generic brands so there shouldn't be a difference but clearly there is. So next time i need pills i have to tell the neurologist to specifically name this brand to the pharmacy. Had to do that with the tegretol as well, it's now in my file that i need tegretol and no more generic brand of that one anymore. It's a struggle! And such little things matter. The insurance companies over here rule and they press the pharmacy to give the cheapest brand of every meds first unless it is then proven that it doesn't work and then the doctors have to include that in their prescription. Madness! I once got the cheapest variety of birth control pills and they made me so aggressive, but it took a while to figure out it was because of that! But in this case there was even a difference between two cheap brands. I'm not pain free but so much better than last week! Just a little bit remains. Annoying but can live with it
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Good that I'm still making sense sometimes lol But yes it can be that precise... I got my next batch of gabapentin from the pharmacy this week and saw that this was the brand i got the first time, the time after i got another brand, so now i stopped with the second brand and went back to the first and I'm almost pain free now! The second brand doesn't do it for me and i now have to remember to let my neurologist know when he orders them.... So weird but even brands can work differently!
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Im sorry! But.....you know what i think? The pills you have now aren't the long lasting ones right? Which means you get three shots at breakfast lunch and supper of the quick working ones. They work quicker but are also quick to fade, and they give quick peaks in your blood and leave quick. Follow me? The long lasting ones keep the meds level in your blood the same. You need those! Because now you get three quick doses but from supper all the way to breakfast you get nothing and that's too long! Trust me I've experienced the same and i told my neurologist i wanted two quick doses at breakfast and lunch and a long lasting one at dinner. He agreed and that is when in October i finally got pain free, remember how elated i was that the pain completely disappeared? And that lasted until February this year after the radiation. 4 months pain free. But anyway, that dosage worked for me, but it's playing with it until you find what works for you. But i can guarantee you that the time from supper till breakfast is too long! I had that too and then you start the day with pain and the meds have to work after the pain each time, when if you start the day with no pain, you're on top of the pain and the meds stay ahead. Make sense? Haha i tend to ramble a bit and in my mind it is clear but I'm not sure I'm conveying it well..... But i think that's the problem! Hugs!
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Yay!!!!!!!
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Oh honey I'm so sorry! I hope it works soon! I know there is nothing to do but wait....
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Aha i was under the impression you were already on the slow release, so my story was based on that. I started on the same as yours and quickly went on to the slow release ones. I like those better because they keep the meds in the blood leveled. The other ones don't do you get highs and lows in the blood. But at least you're on 600 finally! Lol and I'm glad he wants to see you again and follows up on it.
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Okay good! I'm very interested in what he says! Good luck, will think of you!
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Aww sweetie i totally understand!
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Then you take the second one right in between that, i take my pills when i get up, when i go to bed and then right in between. They have to be spread as best as best as you can over 24 hours. So around 8 hours between dosages. But it's not too strict, 6 or 7 hours is also fine but that way the meds level in the blood stays pretty much the same
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Oh yeah, I'm no doctor but you're taking 2 times 200 now and then it will go to 3 times 200 spread throughout the day! It keeps the carbamazepine level in the blood even....
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Yes that's what I encountered as well, if you just suck up and deal with the pain, ultimately it gets worse. I would already take an extra pill if i were you and tell the doc tomorrow. That's what i did as well in the weekend and called neurologist today and he said better to take this high dosage than live with the pain. And if it gets worse i also need to call him and then we're going to figure out something. So just take that one extra pill. Likely he will say the same and then you're already ahead of things and maybe it will be less by tomorrow. I'm sorry though cause i know how much it sucks and how much it hurts physically but also mentally
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At least that'll help with the stress for 2 months! And since stress can play a part I'll bet you you will be painfree haha!
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Oh yes i agree, if she sees it upsets you she will only take more pleasure out of it. But it's still so weird that she acts that way especially since she takes anti seizure meds as well so if she discredits you she will hurt herself too, so it's bizar! The meds must have gotten to her brains......lol. ....
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Yes i read that, glad i have no such person in my environment! That makes it extra hard to go through such a thing, i don't understand why someone would do such a thing
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Yeah well it is for you as well! And I'm sorry for you too.... I wish none of this had happened but we can't change it. Luckily at my work they're very sympathetic and understanding. My manager his wife also has a benign tumor in her head so there's more understanding than i think there would be in other places. Some have really read up on what it entails so it's like a warm bath people-wise. I also opened up much more than in the years before this so that's a good thing but yeah it still sucks haha
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The store want my job btw i meant doing my groceries
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The dizzyness was each time i went up with the meds. I work as a cleaning lady and have to walk all day, near heavy machinery so it's not really convenient for me either but still i haven't missed a days work before the radiation. Not because of the pain and not because of the meds. I just went on but then the radiation robbed me of any fitness i had left and it's damn hard to build it back up. The machines are loud and often make me very dizzy. Having to get up and down stairs with let's say a vacuum cleaner is such a struggle. But i hope one day soon it will be easier. I absolutely couldn't and can't be without meds but at least it helps. They also make you depressed haha such fun!
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You know if you gain weight and walk around in the store like you're drunk because you're dizzy you should see people look and judge! They'd probably think i am a drunk who takes bad care of herself.....That along with everything else is not easy.....