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    Old 01-31-2008, 12:38 PM   #1
    alexiwildchild
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    annoyed to the fullest...

    well...many of you know i've been taking the nortriptyline for about 10 1/2 weeks now. i have been at the 30mg for quite a few weeks. well, i've only had about 3 days through the meds where my jumpy vision was milder than normal. this past tuesday, i woke up and things weren't jerking violently like they usually do when i open my eyes. my symtpoms were very mild that day--it was the closest to feeling like myself i've had over the past almost 9 months since this started. don't get me wrong though--they were still CONSTANT jumpy vision, but just milder. however, i woke up wednesday--and like i expected, they were back to slap me in the face with a vengence. as well as today-they are like they usually are.

    i am stumped. shouldn't i have had some sort of results on the meds by now??? my follow up with the doc is about a week and a half from today since i last saw him before i started taking the med. i don't know what to do. should i up the dosage, or try the neurontin that teh neurologist previously prescribed??? this is making me insane!!!!! i am still searching all over the web for other reasons i have this vision junk. i feel normal, other than that--and it sometimes of course makes me a little dizzy/nauseated, but not a lot anymore.

    any suggestions from those who've tried more than one med to stop the symptoms??? how much longer should i take it?

    Last edited by alexiwildchild; 01-31-2008 at 12:39 PM.

     
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    Old 01-31-2008, 02:45 PM   #2
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    Re: annoyed to the fullest...

    Alex...this is what I have heard...that if you find a dose where you notice some good changes...stay on it a bit. The way it typically works is that on a dose where you notice consistent (even if small) improvements...stay on the dose for a while. It tends to make the symptoms peeter out over time...that is what I have heard.

     
    Old 01-31-2008, 03:17 PM   #3
    alexiwildchild
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    Re: annoyed to the fullest...

    Quote:
    Originally Posted by charlotte67;3***522
    Alex...this is what I have heard...that if you find a dose where you notice some good changes...stay on it a bit. The way it typically works is that on a dose where you notice consistent (even if small) improvements...stay on the dose for a while. It tends to make the symptoms peeter out over time...that is what I have heard.
    thanks for the input charlotte! how are you doin on it? the only prob with me is that there is nothing consistent with this. the mild days were very far apart--nothing close to being like a daily thing. i just don't know what to think! i want so bad to be normal again, and it's like i've wasted enough time since this all started, and i don't want to waste any more if i don't have to and try another--ughh!
    guess i just have to wait to see what he wants me to do

     
    Old 01-31-2008, 04:22 PM   #4
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    Re: annoyed to the fullest...

    I have been on 10 mg's for 5weeks tomorrow...I have to say, I am having more true migraines this week. My eyes are still off, just much less, my eyes stiff..just less. My "I feel like death moments" are gone. I use to have horrible days still..and they are gone. I see it working, just not 100% yet.

     
    Old 01-31-2008, 06:50 PM   #5
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    Re: annoyed to the fullest...

    Don't fret if you aren't 100% yet, just celebrate the progress you've made so far. If it's modifying your symptoms for the better, surely you're on the right track?

    You still have a lot of room to increase dosage (30mg is not much), and add (or cross-taper) to another medication. I don't know what the jumpy eye issues you refer to are (everyone has different ways of describing things) - but if it is nystagmus, neurontin is likely to help with that.

     
    Old 01-31-2008, 08:32 PM   #6
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    Re: annoyed to the fullest...

    Quote:
    Originally Posted by admw;3***856
    Don't fret if you aren't 100% yet, just celebrate the progress you've made so far. If it's modifying your symptoms for the better, surely you're on the right track?

    You still have a lot of room to increase dosage (30mg is not much), and add (or cross-taper) to another medication. I don't know what the jumpy eye issues you refer to are (everyone has different ways of describing things) - but if it is nystagmus, neurontin is likely to help with that.
    well...i was feeling normal before the meds as far as the stuffy head feeling had finally left and the horrible full ears (i still get every now and then). so i don't know if what's happening is really progress. i just think 3 days out of almost 11 weeks isn't that great of a ratio, ya know. i don't have nystagmus, but my vision--not my eyes--is a constant jumpy, shaky, wavy vision. it's mostly the outer rims of objects, especially peripheral and not really up close--although it does happen when i am reading. it is all the time...relentless. so that was what was a tad milder, but it was still there on those 3 days.
    dunno...i have read about superior oblique mykokia and was wondering if that may be my issue, if so, i have seen wehre some use neurontin to help ease it...have you heard of it. i just dont know if it is in one eye or constant like mine...can't really find a good article about it.

    thanksfor the input--i wouldn't mind increasing it at this point

     
    Old 01-31-2008, 08:40 PM   #7
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    Re: annoyed to the fullest...

    How do you sleep with the nortriptyline. I am on amitriptyline and it's suppose to help me sleep but here I am 11:30 and I can't sleep at all. I took it at 6!!! It's not helping me sleep at all.

     
    Old 01-31-2008, 10:47 PM   #8
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    Re: annoyed to the fullest...

    Quote:
    Originally Posted by dizzysally;3***997
    How do you sleep with the nortriptyline. I am on amitriptyline and it's suppose to help me sleep but here I am 11:30 and I can't sleep at all. I took it at 6!!! It's not helping me sleep at all.
    i sleep pretty good on it most nights...however, there are still some nights that i am jittery or anxious on it and have a hard time falling asleep--but they aren't that often. the nori actually makes me a lil drowsy after a bit--on normal nights. is the ami helping your problems at all?? how long have you been on it? i think my body is finally adjusting to nori after almost 11 weeks now...maybe ya just need more time on it...hope ya get some good sleep!

     
    Old 01-31-2008, 10:47 PM   #9
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    Re: annoyed to the fullest...

    Quote:
    Originally Posted by dizzysally;3***997
    How do you sleep with the nortriptyline. I am on amitriptyline and it's suppose to help me sleep but here I am 11:30 and I can't sleep at all. I took it at 6!!! It's not helping me sleep at all.
    nortriptyline made me sleep the 1st week but not anymore

     
    Old 02-01-2008, 03:01 PM   #10
    dizzysally
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    Re: annoyed to the fullest...

    Thanks guys. I have been on it for 4 weeks. First 3 weeks at 10 mg and this last week on 20 mg. I don't seen any difference in my symptoms whatsoever really. They are just as up and down as they were before taking it. I told my doctor last week that I didn't see a difference and that is why he increased the dose. So I am going to stick it out 2 more weeks at least, that will make 6 to see if there is any difference. Once again he assured me that I would start to feel much better within three weeks. I have heard that so many times! ugh

     
    Old 02-01-2008, 03:54 PM   #11
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    Re: annoyed to the fullest...

    Quote:
    Originally Posted by dizzysally View Post
    Thanks guys. I have been on it for 4 weeks. First 3 weeks at 10 mg and this last week on 20 mg. I don't seen any difference in my symptoms whatsoever really. They are just as up and down as they were before taking it. I told my doctor last week that I didn't see a difference and that is why he increased the dose. So I am going to stick it out 2 more weeks at least, that will make 6 to see if there is any difference. Once again he assured me that I would start to feel much better within three weeks. I have heard that so many times! ugh
    yeah, i'm just not convinced that this is doing anything for me either. i've had a really bad last couple of days...it's like having payback for aday with milder symptoms---this sucks. i've been on mine for almost 11 weeks now, so i think it's time to crap or get off the pot in my case lol.

    hang in there, i'd give yours a few more weeks at least..20mg isn't that much either.

     
    Old 02-01-2008, 04:07 PM   #12
    dizzysally
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    Re: annoyed to the fullest...

    Well I hope you find something that helps you. For me I just don't know anymore. I never thought it had anything to do with migraines to begin with. I think its fluid, I always have and every doc says no fluid but everytime I lay down or in the morning before I wake up fluid comes out of my ears and I have shown people. I have gone so far as to get witnesses. LOL I haven't made them sign anything as of yet (ha ha) but they have seen it just so that I know that I am not insane!!!!

     
    Old 02-01-2008, 04:33 PM   #13
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    Re: annoyed to the fullest...

    Quote:
    Originally Posted by dizzysally View Post
    Well I hope you find something that helps you. For me I just don't know anymore. I never thought it had anything to do with migraines to begin with. I think its fluid, I always have and every doc says no fluid but everytime I lay down or in the morning before I wake up fluid comes out of my ears and I have shown people. I have gone so far as to get witnesses. LOL I haven't made them sign anything as of yet (ha ha) but they have seen it just so that I know that I am not insane!!!!
    haha--wow, you sound like me! i have thougth for a long time that mine was eustachian tube issues, and many of them say i do have problems with it, but no one will go as far as puttin tubes in--which i'm kinda glad--cuz now they're not full like they used to feel. i still have some crackling sometimes, but its not nearly as apparent or annoying. i still don't believe that mine is just migraine either--seeing as how mine started. i think it was maybe a reaction to the i.v. of epinephrine when i had an allergic reaction, i've read that it can cause some issues...but i need to go to an opthamologist soon.
    anyway, hope you find some relief soon too...what symptoms do you have??

     
    Old 02-01-2008, 05:17 PM   #14
    dizzysally
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    Re: annoyed to the fullest...

    Wow that is funny. Yeah I totally think it's a eustachian tube problem. I am going to one more doc in March and then I guess I will just pursue other things. I also am going to explore the hormone thing, can't hurt. Before I give up so to speak and give it a rest I want to pursue every avenue and have every test known to man to be sure that I did my best. My started strange too. I laid down one night and felt funny can't really describe it, kinda like I was fading out I stood up and wham! No vertigo but just felt as though I was going to pass out. It went on like that for 10 days (I was on vacation) and then when I got back it spiraled out of control. For the first 3 months it was really bad and I couldn't even get out of bed (after the vacation). The symptoms i have or have had at some point are dizzy, mostly lightheaded, low bp and low heart rate. Just felt as though the floor was coming out underneath of me. Fuzzy, fishbowl, vision, foggy head, headaches, nausea, ears pop and crack all the time, fluid comes out, heavy legs at times, fatigue, etc. So far MRI, cat scan, endoscopy, colonoscopy, chest x-rays, pelvic scan, ultrasound, etc all came back normal. ENG came back normal (still have to get those results so I can see them). Only thing that is definite (supposedly) is autonomic dysfunction that is why I am on the amitriptyline to try to reset my system and I think as far as that is concerned it is working. The low bp, low hr, catatonic (where I just felt like I was zoning out) all are getting much better, headaches, much better too. So for all that I guess I am grateful. Now I am left with the full ears, foggy head, blurry vision (which I hate!), dizzy on and off and extreme fatigue. I am not giving up yet though!!!! Sorry this is so long.

    Last edited by dizzysally; 02-01-2008 at 05:20 PM.

     
    Old 02-02-2008, 10:21 AM   #15
    dizzysally
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    Re: annoyed to the fullest...

    Hey Alex

    Just wondering what your symptoms are and how long you have had this junk? LOL Wondering how long the eustachian tube thing took to get better and how they diagnosed it. Thanks

     
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